tag:blogger.com,1999:blog-89286914105047708632024-03-13T10:04:42.335-05:00Lungs For LauraArchive of Laura's journey living with CF and a double lung transplantUnknownnoreply@blogger.comBlogger42125tag:blogger.com,1999:blog-8928691410504770863.post-68253221486944794052013-07-30T18:54:00.002-05:002013-07-30T18:56:11.452-05:005 Month Lung-aversary<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Thu,
05/09/2013 - 7:25pm</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
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<span style="font-family: Arial, sans-serif;">Wow, April has been
quite an interesting month. If you haven't already heard, on April 18, I
had open heart surgery to fix an ascending aortic aneurysm (AAA). When I
went in to have my stent placed, I was in so much chest and back pain, that the
doctor suspected something else and ordered a CT scan. The radiologist
found the aneurysm and I was admitted to the hospital on the 16th. Dr.
Schwartz, who performed my X-mas day thoracotomy, also did my AAA surgery.
He explained that from the March bronchoscopy, fungus was found growing
in my lung, so from that infection, it most likely traveled through my blood
and attached itself to the spot in my heart where the heart/lung bypass had
been attached to my aorta during the lung transplant. Apparently,
bacteria and fungus love to attach itself to weak/damaged tissue, so an
infection started and created the aneurysm. Ironically, the doctor thinks
the scar tissue from my lung tx helped keep the aneurysm from bursting.
The aneurysm was the size of a small orange!!!!! So, God must be
looking out for me. I was in the hospital for 9 days total. Once at home,
I actually got back on my feet pretty quickly. I do have some
incision chest pain, collar bone pain, and leg/groin pain, but I am able
to breathe better, cook some dinners, pick up, and make it to doctor's
appointments. I am doing really good, the doctors were pretty amazed how
well I am doing after 3 major surgeries!<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">Since I got home, Joe
and I did some house shopping, went to a bridal shower, and walked a 5K in
honor of my friend's son, who has William's Syndrome. After the 5K, I
felt pretty good, however the last three days my right side sciatic nerve is
seriously causing me tons of pain and some loss of ability to walk! After
2 trips to the Chiro, I am finally better today with only some minimal twinges.
=) Other than this, I am planning a graduation party for my cousin and
brother-in-law and getting ready for summer!<o:p></o:p></span></div>
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<a href="http://3.bp.blogspot.com/-WSiA2CfsSFk/UfhSBqKV_FI/AAAAAAAAA0I/QUVqM7uwU3A/s1600/901278_657599060923708_1030806567_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-WSiA2CfsSFk/UfhSBqKV_FI/AAAAAAAAA0I/QUVqM7uwU3A/s1600/901278_657599060923708_1030806567_o.jpg" height="225" width="400" /></a></div>
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<span style="font-family: Arial, sans-serif;">Wish me luck and pray I
have no more of these setbacks!!! I still need my stents, but the doctor
has not cleared me yet for additional procedures, so we are waiting on that.
I will try to keep all of you posted!<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">Laura XO<o:p></o:p></span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-58139026818833268342013-07-30T18:51:00.002-05:002013-07-30T19:05:25.547-05:00Almost 4 Months Post Transplant<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Mon,
04/01/2013 - 6:01pm</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
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<span style="font-family: Arial, sans-serif;">Last blog was on 2/11 -
for good reason - I've been out celebrating my new lease on life! February
and March were pretty successful months. I was doing a lot more and all without
oxygen: Hanging out with friends, going to the movies, going out to eat,
exercising, going to the dog park, and normal daily tasks.<o:p></o:p></span></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-86pVOhHI3wQ/UfhQjTDoDNI/AAAAAAAAAzo/0Klqm7cHV_g/s1600/423889_4109461028007_1887802385_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-86pVOhHI3wQ/UfhQjTDoDNI/AAAAAAAAAzo/0Klqm7cHV_g/s1600/423889_4109461028007_1887802385_n.jpg" height="400" width="397" /></a></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-UOX_eV7qb-g/UfhQmlRWzWI/AAAAAAAAAzw/po_Ci5NB-NA/s1600/600721_4336152055141_2055607725_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-UOX_eV7qb-g/UfhQmlRWzWI/AAAAAAAAAzw/po_Ci5NB-NA/s1600/600721_4336152055141_2055607725_n.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Theresa Caputo!</td></tr>
</tbody></table>
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<span style="font-family: Arial, sans-serif;">I was well on my way to
feeling normal, until my last Bronchoscopy on March 14. While results
came back no infection and no rejection, the doctor did perform a small
procedure. Apparently, the left connection of my lung to my sternum was
inflamed, so the doctor inserted a balloon to open up the main bronchial tube
more. Since that procedure, I've had breathing issues. The amount
of air I have in my lungs when blowing out is going up, but unfortunately the
amount of air I can blow out in 1 second has gone down to levels as low as when
I first got my lungs. The transplant team is concerned and are trying to
figure out what to do. One possible treatment is always going to be
plasmapheresis for humoral rejection. My suggestion is to re-bronch and
see if that bronchial is still closed in. My next appointment is April 5,
so hopefully we'll have an answer that does NOT include plasmapheresis. I
have a lot of concerts, girls nights, volunteer opportunities, and other plans
coming up, so I better not be stuck in the dumb hospital or lose too much function
that I have to start wearing oxygen outside! I started wearing my oxygen when
sleeping again because my sternum feels tight at night and laying on my side. I
have to realize I'm always fragile and there is always a chance for setbacks.
I just have to remember my motto, "go with the flow".
Easter was nice. My dad cooked a delicious ham and I made broccoli
casserole, garlic potatoes gratin, and sweet potatoes - oh and red velvet cake.
My dad made a great pineapple upside down cheesecake! All that cooking
- my back hurts today!!!<o:p></o:p></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-jb4Uf-UhBvY/UfhQqe4568I/AAAAAAAAAz4/1aeZsr5XT28/s1600/902010_10200293334329152_1902337895_o.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-jb4Uf-UhBvY/UfhQqe4568I/AAAAAAAAAz4/1aeZsr5XT28/s1600/902010_10200293334329152_1902337895_o.jpg" height="400" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Laura Rocking out with one of her FAV bands, Orgy</td></tr>
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<span style="font-family: Arial, sans-serif;">On another note, April
is National Donate Life month. It's a chance for organ recipients to recognize
their donors as well as promote organ donation. April 16, I will be
volunteering at Loyola handing out information for organ donation. I hope
I can give someone information that changes their mind or convinces them to
sign up! On April 18, there is a memorial in the hospital chapel in
celebration of organ donors and their recipients. I will be there to say
thank you to my donor, thinking about the letter I want to write to their
family, and supporting other families touched by organ donation.<o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-2Vnnt6tyqac/UfhUiRlJU4I/AAAAAAAAA0w/76LaLdKtCnA/s1600/856933_10200108550949683_1128910087_o.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-2Vnnt6tyqac/UfhUiRlJU4I/AAAAAAAAA0w/76LaLdKtCnA/s1600/856933_10200108550949683_1128910087_o.jpg" height="320" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Laura and Dr. Wigfield</td></tr>
</tbody></table>
<span style="font-family: Arial, sans-serif;">Also, thank you to all
of you who donated to the fundraiser. I had no idea how much this fund
would help me and Joe and keep stress out of our lives. Dealing with the
health status ups and downs are stressful enough, on top of everyday issues.
The fact that I don't have to worry about medical bills is a wonderful
gift. So, again, thank YOU for the help you've provided.<o:p></o:p></span></div>
<br />
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<span style="font-family: Arial, sans-serif;">XO Laura<o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-167833286588256702013-07-30T18:38:00.001-05:002013-07-30T19:03:47.845-05:00Post Transplant: 2 Month Lung-aversary!<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Mon,
02/11/2013 - 11:15am</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
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<span style="font-family: Arial, sans-serif;">Wow, has it been a whole
month since I've blogged?? Sorry, everyone! Let me fill you in.
After the last blog, I was released from the hospital on 1/16. I
went home for 2 days and on my check up appointment 2 days later, I was experiencing
pretty severe shortness of breath at home, and on 1/18, I was re-admitted to
the hospital with Acute Rejection (which can be cured by receiving very high
doses of steroids) and Humoral Rejection, which is kind of rare. Humoral
Rejection means that I received antigens from my donor lungs which prompted my
immune system to create antibodies to attack my new lungs, since they were
foreign in my body. To cure this, I had to receive a central line in my
neck and go through a process called plasmaphoresis. Basically, they hook
me up to a huge machine that filters the plasma out of my blood and it's
replaced by clean albumin. This process is done every other day or every
2 days. I had 6 sessions, plus 2 other injections that help fight the
rejection.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;"> I was in the
hospital for this process for another month and discharged last weekend.
I was in the MICU, which are very small, dark rooms for a whole month.
I didn't go on the computer, I hated watching TV, I was very down...this
is why you guys didn't see a blog - I just was so stir-crazy I couldn't stand
it!!!!! Joe came down every day after work, even just to see me for 2
hours - such a good husband, I can't even express what a support he's been.
Selina came down a few times, which was a joy. No one else could
visit b/c they were all sick! But, I actually didn't want anyone to
visit, I was just so down. It was one of the hardest 2 weeks of my life.
I had so many set backs, I just felt like I couldn't take 1 more!<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">Well, finally I was
discharged last Saturday. The first couple days home was very hard,
trying to acclimate to my medicine/health schedule. I take upwards of 70 pills
a day, I still have my picc line and I infuse 1 IV antibiotic at home. Last
week, I went to the hospital 3 times for more outpatient plasmaphoresis and
some other injections. They pulled out my neck line on Friday, thank
goodness. First shower in 3 weeks!!!!!!!!! It felt sooooo good!!!!
This week, I have 2 doctors appointments. I feel like my biggest
success is since I was hospitalized my lung function continues to go up, so my
lungs are looking great in that respect. I am focusing now on staying
active at home and sticking to my tight schedule. Some accomplishments
include: cooking dinner, baking muffins, going on my first small outing without
oxygen, eating way better. I continue to look forward to do more and do
my treadmill longer!<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">I am finally getting a
taste of normalcy and I am loving it. After all I've been through, it
sort of already feels in my distant past. I can't really remember the
pain and suffering - it kind of just dissipates - I can think about it
happening to me, but I can't FEEL it anymore, if that makes any sense? I
see why people can go through 2nd transplants!!!<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">So that's the latest on
me. I am looking good, I just have a little bit of chipmunk face from the
steroids, but it's kind of cute, I suppose. </span><br />
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<span style="font-family: Arial, sans-serif;"><a href="http://3.bp.blogspot.com/-JJskruhlsI4/UfhUQ2MPd7I/AAAAAAAAA0o/RoHrLVny4Zc/s1600/976951_10200540643271721_1665640777_o+(1).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-JJskruhlsI4/UfhUQ2MPd7I/AAAAAAAAA0o/RoHrLVny4Zc/s1600/976951_10200540643271721_1665640777_o+(1).jpg" height="320" width="240" /></a></span></div>
<span style="font-family: Arial, sans-serif;">I've already become excited
again for online shopping (eek), so I think that fact screams "I'm
better!" Excited for life again.....<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">Laura XO<o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-21623253223143464522013-07-30T18:35:00.003-05:002013-07-30T18:35:55.958-05:00Post Transplant: I didn't go home =(<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Wed,
01/09/2013 - 8:56pm</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
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<span style="font-family: Arial, sans-serif;">The last few days have
been a blur! I am stable in terms of pain and lungs, so it feels like I
should have been home by now, but I'm still here at Loyola. My liver
enzymes have been slowly coming down, so the doctor tried to introduce
posiconazole last night, and my liver enzymes spiked again. Therefore,
they have definitely figured out the high liver enzymes are due to anti-fungal
drugs. I have to stop taking those, and breath in Amphiteracin B, which
is a nebulized anti-fungal drug.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">The last few days have
basically consisted of tweaking my insulin pump settings overnight and praying
it brings down my sugars enough so I can go home. The last 3 days haven't
worked, so I am hoping we can figure this out by Friday, so I can be discharged
and be home for the weekend! Tuesday was a very frustrating, because they
were 95% sure I would be going home. Nurse Erin came in the morning and
was getting me all set to leave, but then I went down to get an ultrasound of
my legs to check for clots (I have none), and when I came back, I found out I
wasn't going home. I cried....and cried....I was pretty upset, but after
thinking about it, it makes sense that I need to stay. I don't want to go
into some diabetic coma at home. So, I'm okay with all of it....just as
long as I'm home on Saturday! =)<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">I've been walking pretty
far. I did 6 loops around the floor, which is 2/3 of a mile. Joe
has visited each night. I had a great time meeting Gina Lombardi, who is
the friend of another transplant patient I met online. Gina visited me 2
days ago, brought me some wonderful nail polish, and we had a great time
getting to know eachother a bit. Funny how lung transplant helps you make
new friends!!! My aunt Jane visited me today and we had a nice time
together. She brought me a late birthday gift, and I will be enjoying my
favorite tea in my new teacup! Thanks Janie-bird =).<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Overall I'm in a good
place. I get better each day! The only thing that I cannot stand is
this hospital food. I just really don't have an appetite. I started
a 'meal list' for home, planning what dinners I want when I get home. Yum.
I am going to ask everyone to pray that we figure out these sugars and I
can get home by Saturday!<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Also, I am praying for
everyone that they don't get this dumb flu that is going around!! <o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-67459351674622012952013-07-30T18:35:00.000-05:002013-07-30T18:35:10.616-05:00Post Transplant: Saturday, Jan 5 - up and down day<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Sat,
01/05/2013 - 11:32pm</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Today was an interesting
day. Nutrition stopped my all day long g-tube feedings so I could start
to gain an appetite and ordered the normal night tube feeds (4 cans over 8
hours). So, now I have to be better about eating this hospital food,
since that is one of the items I need to be able to do before they will
discharge me from the hospital. Last night, I didn't sleep very well.
Apparently, the nurse and respiratory therapist noticed I was having
labored breathing around midnight (I don't even remember the therapist being
here, lol). I woke up a few more times and the doctor came in here and it
was decided to bump my oxygen up to 3 liters and keep up with the
Dilaudid IV pain medicine throughout the night. I also had a 101*
fever overnight. I woke up at 7:30 short of breath as well, but decided
to get up and start my day. The tech came in to test my blood sugar and
it was 500 (normal is 90-120)! We realized there was miscommunication and
I never got insulin to match the overnight tube feeds! I am guessing this
may be another reason I was so out of breath and maybe a reason I had a fever.
OOPS. I didn't have a fever the rest of the day.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Around 8 the liver
doctor came in....my liver enzymes have been high and they're not exactly sure
why, so they took some blood samples. It is SLOWLY going down, but they
asked a lot of questions about family history with the liver and stuff.
Since I've never had liver issues, they are betting it's one of the drugs
I'm on, but they are still trying to figure out which.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Endocrine came in to
discuss the OOPS 500 blood sugar and I suggested now that I'm on the regular
schedule I would do at home, why don't we just transition back to my insulin
pump and let me manage all of that. Her boss agreed, so I am back on my
pump, managing my own insulin, and that is another step towards going home.
I also am doing my own enzymes when I eat, so that's another big change.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">The pain was a little
better today. After the last dilaudid I had this morning at 7:30, I
didn't take it the rest of the day. I relied on non-narcotic pain meds
and heat pads. I had some breakthrough pain, but I'm really trying to
ween off the IV drug. I also was experimenting with the different pain
meds to see which ones really work and which ones don't, so I was taking them
alone and assessing their effect on my pain.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">No one visited today, so
I skyped with a few friends who cannot visit because they're sick...that was
fun! Pulmonary doctor didn't have much to say, I'm progressing well.
Just walk, walk, walk! And do my incentive spirometer.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">So anyway, I will keep
working at it...pray that my little fever was nothing and my liver enzymes
continue to decrease....these things will help me get home!!<o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-38358943591715895812013-07-30T18:33:00.004-05:002013-07-30T18:33:49.151-05:00Post Transplant: An update over the past few days...<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Fri,
01/04/2013 - 2:58pm</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">The past few days have
been good. The mornings are very busy! Joe is back to work and my
Mom has a cold, so she is not able to visit. I asked the doctor how long
after her symptoms are gone should she wait to see me, and he said a few weeks!
He said 1 week minimum, but 2 weeks is best. So, if any of you are sick,
or you are getting over something, we have to wait 2 weeks before seeing
eachother....that rule is for the first 6 months, because I am SO very
susceptible to infection that one little cold can cause me VERY bad problems.
Because of this, I have decided I want everyone who comes into my room
(nurses, techs, docs, visitors) to wear a mask. I don't want to
compromise these lungs one bit!<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">So the past two days, I
have woken up between 7:30-8 am, which is nice, and the pain hasn't been as
bad. They are trying to ween me off IV pain meds, which is the next
step to get me closer to going home. I passed my swallow test for solid
foods, so now they are trying to get me to swallow some pills on my own, which
is another step to going home. They are thinking maybe Tue or Wen. next
week I may be going home! I am not getting my hopes up because anything
can happen, but that is the path we are on. The other thing they are
trying to do is get me off of oxygen. Right now, I am on 2 liters. If
need be, they would send me home on oxygen.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">So my day consists of
trying to pound down some breakfast by 8 am because respiratory comes about
that time to do my longest therapy (3 nebulizers, 1 ez pap lung exerciser, and
chest PT). The nurse is around at this time to give me all my meds.
There are 3 different doctor teams that come during rounds all before
9:30 am (when it rains it pours!). Physical therapy my come at this time
to exercise me. I also have to think about doing my incentive spirometer
(a breathing machine that helps open my lungs and get goop up) every hour 10
breaths. This is all before 10 am. Then, I have to think about
taking walks at least 3-4 times a day around the floor. My rule is that I
have to do all my medical stuff before I can do fun stuff (like getting on the
PC). I must do everything in my power to take care of these lungs and
help them get rid of the fluid that is still in there and keep them expanded!<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">My CT scan reveals a
significant improvement after the 2nd surgery, so that is a blessing.
They are more expanded with a little fluid. I can totally breathe
way better, as shown by my decreased oxygen needs and my overall "how do
you feel?" question. I have been sleeping well and can even sleep on my
sides now! I think things are moving along at a great pace and I pray
things continue to look up and up.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Joe and I received about
1.5-2 hours training last night from the post transplant nurse regarding
sanitation, food prep, etc. for when I get home after transplant. On
Monday, I will probably receive the Pill Box training, since I will go home on
probably 20 medications that I have to take religiously at the same time each
day. I also will have to take my vitals daily when I get home. For
the first few months, I will probably be on nebulizers and they may want me to
use my vest for a bit for airway clearance. I need to be walking when I
get home, so I am happy we have the treadmill! After I go home, I have to come
back weekly for 4 weeks for blood work and check ups. I cannot drive for
the first 3 months, so I will need chauffeurs when I need to go anywhere .<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">On another note, while I
am elated that I am doing so well, there is another transplant patient that
I've become friends with, Kelly Langs, who was transplanted on Dec 6 at
Stanford. Unfortunately, Kelly passed away on 1/1/2013. This is
just a reminder how fragile lung transplant is and how hard I will need to work
to keep my lungs safe, expanded, clear, and free from infection. Please
take a moment to read Kelly's blog by <u><a href="http://kellystransplant.wordpress.com/2013/01/03/moment-of-silence-organ-donation/"><span style="color: #136b96; text-decoration: none; text-underline: none;">clicking here</span></a></u>.
I am so sorry this has happened and I pray for Kelly and her family daily.
If you are visiting me, I will ask you to wear a mask, remind you to wash
your hands, and possibly ask you to do other things to keep me safe.
Please don't be annoyed or offended that I am asking you to do these
things, it is for my protection. <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Also, thank you all so
very much for your support for the double your dollars. I can't tell you
how much you all mean to me and how much your words on facebook, emails, phone
calls really lift my spirits. I appreciate all of you so very much.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Anyway, lunch is here,
my hour downtime is over before I start the next course of treatments, walking,
medication, nap, and a visit from Grandma. Talk to you soon!<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Laura<o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-90359539887814532472013-07-30T18:32:00.000-05:002013-07-30T18:32:34.474-05:00Post Transplant: Ice Ice Baby...<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Mon,
12/31/2012 - 2:58pm</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I am sorry I've been
missing for a while! The past week has been busy, draining, scary, emotional
and happy....quite a journey. On Dec 23rd, I woke up suddenly at 6 am,
sweating and feeling like there was someone sitting on my chest.
Obviously my first thought was heart attack. The doctors ordered a
CT scan with contrast and found there was some fluid build up around my heart.
This can happen with transplant, so they started out by just watching my
triponin levels and monitoring me. My lungs looked the same - not yet
expanded and pockets of fluid build-up. This was causing shortness of
breath and pain.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">So, Christmas Eve I was
starting to become very short of breath and had a lot of pain. I was
about an 11 on a scale of 1-10. Christmas day, the doctor suggested we
schedule a thoracotomy for Dec 26, which means they would open my
transplant incision and clean out the fluid from the 'pockets' and clear out
the fluid around my heart. In speaking with Dr. Schwartz, I explained I
could simply not go another day with how I was feeling....I couldn't breathe, I
felt like I was quickly deteriorating and it was too scary to wait. He
agreed it was better not to wait, so he offered to perform the surgery that day
(Christmas). Within 2 hours I was wheeled off to the OR with Joe and my
Mom waiting for me.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I was sedated and had a
breathing tube until Dec 28. Someone messed up and wasn't paying
attention...the sedative stopped working around 4:30 am and I woke up barely
able to breathe, hands tied down, not able to reach the nurse button, my room
door was closed so no one could hear me bang the bed. I sat there
watching the clock for 30 minutes before anyone noticed I was awake. That
was pretty scary for me.... Around 7 am, they started the process of weaning me
off the breathing tube. They fully removed the tube around 7:30 am.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">So.....I basically
started the healing process all over again. The pain was pretty intense, so
they put in a new epidural line and tried a bunch of pain meds to find the
right mix. I couldn't do much because the pain was so bad. I had 5 chest
tubes. They removed 2 on the 29th. I started to feel better on the 30th,
once they removed the other 3 chest tubes, they do cause a lot of the pain.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">My x-rays are looking
good, my lungs are now expanded! They are expanded more now than they
were after transplant, so the thoracotomy was successful. Today they removed my
neck IV line and the pee-pee catheter. I am slowly losing lines =).
They do want to take another x-ray because the doctor did not hear as
much air in the lower left lung than he does in the lower right, so they are
investigating this.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I will be seeing Dr.
Wigfield today and he will decide if I can go back to the Tower 5 rooms, out of
ICU. I don't anticipate any road-blocks to this, but Wigfield may have a
reason to keep me in ICU one more day. I did go for a walk this morning,
and I didn't have to stop to rest!! My O2 saturation didn't even go down
on my walk....slow and steady baby! I'm so happy about this. The
nurses and staff seemed to be really impressed with how independent I am and
keep mentioning that over and over, so that makes me feel really good about my
progress. I still have this crazy pain under my left armpit/boob that
breaks through every couple hours, but the Delauten pain med seems to help
this.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">So, overall, I am back
to doing great again. You are probably wondering my I named this blog Ice
Ice Baby? Well, to show you how well I am doing, I am crossing one goal
off my list. I DANCED! I danced and didn't lose my breath and I
didn't cough! Vanilla Ice was on The View and I caught his performance of
Ice Ice Baby and I Chair Danced that song out baby! Even the nurse saw me
dancing and said, "So this is the REAL Laura, huh?" I am counting
this chair dancing! My arms up and down, my torso swaying, head bobbing....It
felt good. When the song was over I just looked at Joe and broke down
crying. I just can't believe I did that and didn't lose breath, my
saturation stayed the same and I didn't cough. It was amazing. As Steve
would say, "It f***ing blew my mind". I am crying as I write this, I
just cannot believe what I just did today. I am not even thinking of this
setback now - I am just looking forward to meeting more of my goals.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">The next step is to pass
my new swallowing test so I can drink and eat again. More to come on
that! Also, I need to start learning to breath like a normal person
again. I am trying really hard to not rely on pursed lip breathing, but
instead use my diaphragm to breath correctly. This is REALLY hard to do,
to retrain yourself to breathe....it's supposed to be natural! I tried to
focus on this on my walk this AM and I think that's why I was able to get all
the way around without stopping.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Cross your fingers I get
to go back to the hotel like rooms on Tower 5 today =) Thank you for your
support and comments on facebook. I do read them, but just don't have the
energy or time to respond to everyone. It is seriously always busy here,
someone is always in my room needing to test me, talk to me, exercise me, etc. But,
please know your comments are so very encouraging and I get such joy reading
them.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Thank you again to my
donor and their family, this is such an amazing gift. I love all of you,
XO<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Laura<o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-4574288547279963232013-07-30T18:31:00.003-05:002013-07-30T18:31:25.307-05:00Post Transplant: Saturday, 12/22 and I'm Feeling GOOOOOOOD!<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Sat,
12/22/2012 - 10:15am</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Hey everyone! I
had a great day yesterday....you all know there is no infection and no
rejection....yes!!!!!...but I made even more strides.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I got ALL of my chest
tubes removed yesterday about Noon! It is SO FREEING! I then got
moved to 5th floor tower, which is out of ICU! It is like a hotel up here, they
are new rooms and OH so nice! If I have to be here a while, this is where
I want to be, for sure. Nurses again up here are very nice and I trust
them. Of course they have more patient to nurse ratio, so I have to plan
a little ahead of time if I think I might need something from the nurse, but
when they are here, they're GREAT!<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">My wonderful friend,
Jenni, came by last night and took me on my night walk. We had coffee talk and
it was so nice to visit! Laughing and no coughing has been restored!
I am even wearing my own PJ's now! No hospital attire needed!<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I am still in a little
pain, but removing those tubes helps A LOT with pain, and the feeling like I'm
a normal person in normal clothes, eating....I swallowed my first pill since
the surgery! <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I know, it seems silly
getting so excited over pill swallowing, but this is a first of many things I
need to re learn how to do before I can go home. Doing each of these
things makes me so HAPPY. I am fully content right now. My
breathing is better, I was able to turn my oxygen down!<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I am having a few
visitors today (you can visit if you're not sick and you don't bring your
kids~) and am super pumped to show my new self off to my friends and family.
I am at peace today....I hope for more postitive things to happen as long
as I can keep up my walking, therapy moves, and take naps! My mind is so
clear and content, I literally can't write very well, I notice my train of
thought is just whereever today. Carefree! I'm in love!
<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Joe slept here overnight
in my room! It was so nice waking up to see his face, I've missed that
for 12 days now. I miss his face. I don't think anyone needs to sleep
here ongoing....Joe can get his puppies home, I know he misses them =).<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Okay well, logging off
for now, looking forward to the day. Love, Laura xxoo<o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-71155827790580811512013-07-30T18:30:00.003-05:002013-07-30T18:58:21.813-05:00Post Transplant: Friday's Update, so far!<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Fri,
12/21/2012 - 1:36pm</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
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<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;"><br /></span></div>
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<span style="font-family: Arial, sans-serif;">Hi everyone! Laura
here!!! So good updates for today, your prayers are working. My
pain has been less over the last two days...I am about a 5 in pain and anticipate
that it will be way better once I get these 2 last chest tubes removed.</span><br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Arial, sans-serif;"><a href="http://1.bp.blogspot.com/-ucqAUl5mcio/UfhTCtXDYQI/AAAAAAAAA0Y/S90kkaySRoA/s1600/479104_4523906708890_1774062215_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-ucqAUl5mcio/UfhTCtXDYQI/AAAAAAAAA0Y/S90kkaySRoA/s1600/479104_4523906708890_1774062215_o.jpg" height="180" width="320" /></a></span></div>
<span style="font-family: Arial, sans-serif;"><o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">GREAT news this AM, the
biopsy came back and I am NOT in rejection!!!! I am so overly thankful
for this news.....to sum it up, no infection and no rejection. At this
point, they are thinking it was such a stressful surgery to my body (3.5 hours
to get my right lung out of my body, layer by layer, cemented to my chest
wall), that it's just taking longer to heal and for fluids to reabsorb.
They are thinking of pulling the chest tubes and seeing how simple
exercise, walking, physical therapy, and good nutrition will help my lungs
fully expand. In a couple weeks, I could go back for a small thoracotomy,
where they open a small part of the incision and suck out a little fluid to help
me expand....but that isn't until far down the line.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I will be moving out of
the ICU probably later today to 5th floor, which is more room space, all redone
and has I think 24 hour visiting hours. Wayyyyyy more comfy. I
don't think I'll be home for Christmas, but that's okay~I'm not even thinking
about that. I am simply thinking about my blessed birthday gift and
selfless donor and donor family. I have so much love in my heart for this
person (I have another person's lungs!?!?!? What!?!??! Wow!).<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">So, I will continue to
push on hard with my exercises. The more un-sick visitors I get, maybe
the more exercise and walks I will go on =).<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">Thank you for everyone's
continued thoughts and love. I really appreciate you all!!!!! <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Laura XO<o:p></o:p></span></div>
<br />
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<span style="font-family: Arial, sans-serif;">Pictures from my first
walk, lots of cords!!:</span></div>
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<a href="http://1.bp.blogspot.com/-7F_9dd4Q8xE/UfhMJQzi45I/AAAAAAAAAzI/yxIoePRCtL4/s1600/transplant.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-7F_9dd4Q8xE/UfhMJQzi45I/AAAAAAAAAzI/yxIoePRCtL4/s1600/transplant.jpg" height="400" width="225" /></a></div>
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<a href="http://1.bp.blogspot.com/-hT6jz6diegg/UfhLnoiV94I/AAAAAAAAAzA/vvcbWgtIWc0/s1600/IMG_20121209_110435_324.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-hT6jz6diegg/UfhLnoiV94I/AAAAAAAAAzA/vvcbWgtIWc0/s1600/IMG_20121209_110435_324.jpg" height="400" width="225" /></a></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-17927343141160174492013-07-30T18:23:00.001-05:002013-07-30T18:23:09.600-05:00Happy Thanksgiving!<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Sat,
11/24/2012 - 2:10am</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-9ubiuSMIQuY/UfhK0oRIIbI/AAAAAAAAAy0/0z8NfFjs_VY/s1600/thanksgiving.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-9ubiuSMIQuY/UfhK0oRIIbI/AAAAAAAAAy0/0z8NfFjs_VY/s1600/thanksgiving.jpg" height="180" width="320" /></a></div>
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<span style="font-family: Arial, sans-serif;">Hi everyone! I hope all
of you had a wonderful Thanksgiving and fun weekend ahead. I wanted to
update you on what I did for the week. To everybody's surprise, I hosted
Thanksgiving this year...I got plenty of "are you sure?", "that's
a lot of work.", "that's too many people.", etc. I talked
it over with Joe and we both agreed that it's more important to spend the time
with family and not worry about how much 'work' it will be. If we didn't
get the furniture dusted, then oh well. If I couldn't manage to make 2
pies, then oh well. This year was a go with the flow year. If you
know me, then you know it would have been very hard for me to go with the
flow...I had to have everything planned and perfect. Being in the
situation I'm in now teaches you to abide by those interesting life
lessons....the life lessons that you know in your mind, but you don't always
put into action (don't sweat the small stuff, go with the flow, don't stress).<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">We were planning to have
9 people, so I grocery shopped a week ahead of time and made a
schedule/timeline in advance so I was not trying to do everything in one day.
Major kudos to Joe who did the house cleaning, a LOT of the
preparation/cooking alone, and he helped me with most of what I was planning on
cooking myself. (Thanks to Mom for cleaning, too!) I made the vegetable
stock over the weekend for the brine. Monday, I made the cinnamon ice cream.
On Tuesday, I took the opportunity to teach my cousin how to make real
cranberry sauce (and see Breaking Dawn!). Wednesday, I made pumpkin and
apple pies and sweet potatoes, while Joe took care of the brining, washing our
fine china, and helping me set the table. Thursday, Joe got up and made
the stuffing, took care of cooking the turkey, and made me breakfast. It
was a chill day - I even had time to blow dry my hair, which I NEVER do.
After I got ready, Joe made the mashed potatoes and I started the gravy
making....we were basically done 30 minutes before guests came! I
couldn't believe it. I would normally be rushing around, frazzled,
stressed....this year felt like such a breeze!!! (Maybe if you ask Joe,
he would say it was a little hard!) <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I had such a wonderful
time with my husband over the past few days, working together on almost
everything to prepare for our party. We didn't argue one time (and
usually when we're in the kitchen, we'll argue at least once on how to do
something my way <!--[if gte vml 1]><v:shapetype
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alt="cheeky" style='width:15pt;height:15pt;visibility:visible;
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</v:shape><![endif]--><!--[if !vml]--><img alt="cheeky" height="20" src="file:///C:/Users/Joseph/AppData/Local/Temp/msohtmlclip1/01/clip_image001.gif" v:shapes="Picture_x0020_8" width="20" /><!--[endif]-->). I really think
it boiled down to my attitude (and the fact we have cooked thanksgiving before,
so it wasn't a blind run) and that Joe seemed very engaged with me the entire
week. I just had such a wonderful couple days! Big thanks to my Mom
and Aunt Karen for cleaning the dishes, too!<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Today, I slept
'til 3 pm! Ahhhhhhhh...no black Friday for me! My bestie
invited us to her Thanksgiving celebration, so we had a more than stellar meal
(she's as good a cook as me!) and Joe and I were the last to leave the party
(that NEVER happens), so we had some nice alone time with Stephanie and Noel
helping them clean-up and a healthy game of Catch Phrase. Tomorrow, I
think Joe and I will see his Grandma, maybe a movie (Skyfall?)....and Sunday, I
will spend time with my cousin, Selina.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">Overall, this weekend
has really been a celebration for me of everything I am grateful for - truly.
Most of all my husband, Mom, family, and friends! Who needs STUFF
when you have LOVE?<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Laura xo<o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-23676050589358805072013-07-30T18:19:00.001-05:002013-07-30T18:19:14.293-05:00Why Wait to Give Thanks?<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Thu,
11/01/2012 - 11:54pm</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">It's November 1!
At the end of the month, many of us will be gathered around the dinner
table, toasting to family and friends, and sharing what we have to be thankful
for. Why wait until the end of the month?!<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">First, I am thankful for
my husband, who takes care of me on a daily basis -both physically and
emotionally. He washes my tubes, gets my feedings together, makes dinner,
walks/feeds the dogs, cleans the house, etc. Beyond that, he's my
partner, in it with me for the long haul. He never makes me feel like he
wishes for a different life. I never question his love or devotion to 'us'.
I have to wonder if this is why I don't think about transplant on most
days - because most days are happy and filled with love. He's on this
journey with me and does everything in his power to give me everything I need.
I couldn't be more blessed. How did I get so lucky?<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Second, I am thankful
for my Mom. She comes over every night to do my manual treatment and has
been doing this for probably over a year now. Ridiculous, right??? Thank
goodness she recently purchased a house only 7 minutes away from me! You
may be asking yourself why Joe doesn't just do my treatment....he does sometimes,
but Mom is just better at it - I think it's her shorter, fatter hands!!!
It creates the right cushion and pop. Anyway, I know she's tired at
9:30 at night and when she is done by 11 pm, she has to drive home and is very
groggy! Her shoulders, arms, and wrists ache from the beating she's
giving me for the 1-1.5 hours, but she (mostly) doesn't complain. She's
devoted! She will help with other chores that I ask her to do and will
drive me to my doctors appointments. I am thankful that she's available
and willing to help me and I love her.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Third, I am thankful for
my job for offering long term disability benefits and health insurance.
This journey could be a million times harder if these benefits were not
available and I am SO THANKFUL for these. I am also extremely thankful
for all of the people that have supported my fundraiser and donated to help
with other extenuating costs that will come from my transplant surgery. Thanks
to Jeff for running a marathon and raising money for me!!! I feel a lot
of love and prayer coming from all of you! <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Next, I am thankful for
my friends and family. They keep me energized and help me get out of the
house! It's so important for someone who is chronically ill not to lose
touch with friends and society, or else it's so easy to become isolated.
For everyone who has come by my house to sit with me, cook for me, bring
me meals, visit, take care of the dogs, include me in plans, whatever....THANK
YOU. You really don't know how much a phone call, card in the mail, or a
visit to my home really means to me in the scheme of things. Special
thanks to Stephanie and Selina for not minding doing boring things with me
a lot of the time. =) Thanks, Leigha, for all your greeting cards and to
Jenni for our Cheesecake Factory dates. Thanks, Auntie Pam - I always know how
much you are thinking of me.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">Thanks to my puppies,
who never see me differently, no matter what physical condition I am in.
You guys make my days bearable with your hugs, kisses, and playful
spirits.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Thanks to my doctors,
nurses, and pulmonary rehab staff. Without your care, I wouldn't be here
today. Special shout-out to the pulmonary rehab staff for helping me stay
motivated while I workout. It's easy to dread going to the gym, but
seeing you and chatting you up between machines makes me want to come to the
gym! Thanks to the mystery man/woman who pays my gym membership! =)<o:p></o:p></span></div>
<br />
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<span style="font-family: Arial, sans-serif;">I know there is a lot of
other stuff I would list out if I had more time....but it's 9:52 pm and time
for my nightly treatment! This month (and always) I will be giving thanks
for all of the wonderful things in my life and counting my blessings before I
sleep. Ya, needing a lung transplant sucks, but in the grand scheme of
things, I say I'm pretty damn lucky for all of the wonderful blessings I've
listed (and more!). So, happy November and Happy Thanksgiving!!! XO<o:p></o:p></span></div>
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<a href="http://2.bp.blogspot.com/-uYtNBmqX2Og/UfhJ5BwSNMI/AAAAAAAAAyk/63G4bjdCwxU/s1600/IMG_2216.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-uYtNBmqX2Og/UfhJ5BwSNMI/AAAAAAAAAyk/63G4bjdCwxU/s1600/IMG_2216.JPG" height="240" width="320" /></a></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-61111699527044829152013-07-30T18:17:00.001-05:002013-07-30T18:17:19.775-05:00Am I Losing My Hearing?<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Tue,
08/28/2012 - 11:59pm</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-yFsXbwgMpAo/UfhJbmXnqzI/AAAAAAAAAyc/gnbh-II6sYI/s1600/IMG_1535.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-yFsXbwgMpAo/UfhJbmXnqzI/AAAAAAAAAyc/gnbh-II6sYI/s1600/IMG_1535.JPG" height="240" width="320" /></a></div>
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<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;"><br /></span></div>
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<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">So, a few weeks ago I
noticed that I have been saying, "What?" to Joe a lot when he says
something. I was sure it was because he mumbles or surprises me while I'm
paying attention to something else, but since it was occurring more often and
one of the side effects of a drug I take is hearing loss, I wanted to be tested
to make sure it was not ME.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">I had an appointment
with the ENT on Monday and he checked my sinuses, my hearing and my sense of
smell. Good news on the sinus front....I used to have nasal polyps, but
since I've been doing the antibiotic nasal wash, the polyps have gone
away!!!!!! Yay! That means less infection that would be able to
travel down into my lungs and it also means NO nasal polyp surgery after
transplant would be needed. What a relief to hear that news! I
didn't realize polyps could go away, but I guess they can.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I did mention to the
doctor that I do get a strange smell in my nose, and it's especially strong
with detergent and soap and asked if it was a good idea to do a smell test.
He agreed, so I sat in a room with a booklet of 40 scratch 'n sniff
multiple choice questions and sniffed my way through! It was kind of hard
sometimes, I was surprised that I was contemplating choosing between Rose and
Gasoline! The results had to be tallied so, on to the hearing test, the
real reason I was there.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">In my mind I was really
trying to prove once and for all that Joe needs to speak louder (I want to
win!). I sat in the chair and repeated the words the audiologist would say and
raised my hand when I heard the beeps. Back in the room to see doc and
get my results. The hearing test came back good! I'm well within
the normal range, except for frequency of 3000-4000, which I was 25, instead of
under 20 on a 100 point scale, so basically almost normal. I asked if
Joe's voice is within that frequency or something, and NO, that frequency is
more about hearing the subtle "f, s, t, p" in words like Pharaoh.
So, I said to the doctor, "So, I win?", and he extends his had
for the championship handshake, "You win." All in good fun, but
it's nice to know it's not me!<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">As for my smell test, he
said it was calculated that I have 25% smell loss. I think I would have to
argue with that number for 2 reasons: some of those scents on the test were not
life-like (grapes and cherries smelled like kool-aid, chocolate didn't smell
rich) and I am a great cook/baker so I have to know what stuff tastes like and
you need smell in order to taste!! My argument is I'm used to smelling
the real stuff, so the fake scents confused me!!! Until the day my food
tastes like crap when I cook I will argue I have not lost quite 25%. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">In the end, the check-up
was great. Still no news on the transplant front...still number 2 for my
blood type. I just continue what I'm doing and staying positive. XO<o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-26978424202880219182013-07-30T18:15:00.002-05:002013-07-30T18:15:26.128-05:00Don't wanna jinx myself...<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Sat,
07/21/2012 - 11:33pm</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I don't want to jinx
myself, but I've been feeling pretty good this week. I've had some extra
spoons to use this week, I guess! (See <a href="http://kellystransplant.wordpress.com/2012/07/18/the-spoon-theory-by-christine-miserandino/"><span style="color: #136b96; text-decoration: none; text-underline: none;">this blog</span></a> from
fellow tx patient re: Spoon Theory). This week, I spent Saturday mattress
shopping, Sunday visiting with my grandma/aunt/mom playing cards, exercised on
Monday, ran bedding/pillow shopping errands and got my hair done on Tuesday,
completed bedding shopping on Wed. and cooked dinner, saw a movie with Mom
Thursday, did bedding laundry and picked up the house Friday in preparation for
our mattress delivery, and today cooked breakfast, picked up the house more,
dusted our bedroom, went to a brewery and classic car night at Dog N' Suds.
Tomorrow I am contemplating the Museum of Science and Industry.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Now, with all of this
extra energy and ability I seem to be having, I also am just WAITING for the
minute that I CRASH AND BURN! With all this activity, I just know it's
coming! However, I'm not going to stop doing stuff and just sit around
waiting to be tired - when the crash happens, it happens. All I can
realistically do is be prepared to turn my little butt around and get home
for some R & R. I did have to make some informed decisions regarding
WHICH activities I could do today (walking around a fair = no, sitting at a
brewery = yes). When you're ill, these are the moments you have to be prepared
for and accept. I just look forward to the time when I don't have to
forgo activities because walking from the car to someplace is simply too far.
I can't wait to stop being left out of activities simply because I cannot
breathe.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Of course I realize that
transplant is not a cure - you're trading one set of 'problems' for another -
but if I can breathe easy, I think I will be able to deal with the 'other
stuff'.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">XO<o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-32442731178178389112013-07-30T18:14:00.001-05:002013-07-30T18:14:46.631-05:00Wonderful Experience<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Sat,
06/23/2012 - 11:40pm</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">If you read my last
post, you may remember that I mentioned Joe and I were going to have a portrait
session done last Friday. We won a dream portrait by photographer and
artist Audrey Wancket (you can read our dream wish <a href="http://blog.wancketstudios.com/index/view-post/id/100"><span style="color: #136b96; text-decoration: none; text-underline: none;">submission here</span></a>).
I was really excited and Joe and I worked hard to consider outfit choices
and how we wanted our portrait to look using the guidelines Audrey mailed to us
when we won. If you check out her website, I think you'll understand why we
felt it was a key decision, based on the portraits she does. Joe and I both had
4 outfits that we made sure were dry cleaned and pressed, loaded carefully into
the car, along with the beautifully groomed pups (thanks Shear Paradise Pet
Salon!). I expected our session would be maybe 1.5 hours with 1 outfit
change.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Audrey's property is
beautiful! Her studio is in a remodeled barn, she has horses on the property,
and many outdoor spots that can be used in the photo (we didn't do outdoor
because of 1. the dogs attention span and 2. Audrey said outdoors are better in
the morning based on sun position - and you know me - I am NOT a morning girl).
Chloe and Butters were immediately in love with Audrey and Kate, her
assistant. The warmness I felt from the two ladies helped ease my anxiety
about working with my special needs.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Audrey chose all of the
background and props, so it was great that I didn't have to try to tell her
what we envisioned, because I actually wasn't really sure! This is where
her great artistry skill comes in. For the last shoot, Joe and I got to
play around a bit with our last outfit choice and our vision. We got some
REALLLLLY cute snapshots of the dogs alone on pedestals. I cannot
wait to see them!<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">We were there for about
3 hours! It wasn't all photo taking - there were many breaks where we
just sat around and chit-chatted a bit. Today, I didn't feel sick. I felt
normal - this is a testament to how great Audrey and Kate are. Kate was
super helpful hiding my oxygen and bringing it to me for "oxygen
breaks", because I didn't want to wear it during the photo. They
were so patient with the dogs and really good at getting their attention for
the camera (thanks burp, fart, bird noise, etc. maker machine!).<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I feel like I found 2
new friends during this process. I look forward to returning on July 3 to
see our photos and pick which one will be transformed into our dream portrait.
I know we'll never be able to walk away with just 1 picture.....thanks
for a unique, personal, and memorable experience, Audrey and Kate!<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;"><br /></span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-34621732082287939032013-07-30T18:08:00.002-05:002013-07-30T18:08:27.263-05:00Not Much To Tell!<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Sat,
06/16/2012 - 11:45pm</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Hi everyone! Well,
it's been pretty boring around here! We saw Dr. Wigfield, who will be the
lead surgeon taking Dr. Love's place, on June 2. He seemed very
interested in my case and making me comfortable. He had personality and
spunk. I felt he was just as accomplished as Dr. Love, but he just
doens't get/take much credit. NOw that he will be the head, maybe we will hear
his name more! He made me feel confident in moving forward with the
program.</span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I spoke to the
Procurement Nurse the other day. I am listed as #2 for my blood type at
Loyola and #3 for my blood type in the region, so my time is approaching, slow
but steady! Sidenote, the patient waiting in front of me for lungs
received her gift of life on May 18th and is home now and doing fabulous!!!!
I have to keep those success stories in the forefront of my mind.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">This Friday, Joe and I
have our dream portrait scheduled that we won (thanks to a lot of you guys
voting for us!). Check out the photographer's website: <a href="http://www.wancketstudios.com/"><span style="color: #136b96; text-decoration: none; text-underline: none;">http://www.wancketstudios.com/</span></a> and
re-read our dream wish <a href="http://blog.wancketstudios.com/index/view-post/id/100"><span style="color: #136b96; text-decoration: none; text-underline: none;">submission here</span></a>.
Her photography and art is so exquisite, but ours will be a bit more on the
casual side since we are including the doggies!<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Joe participated in his
first 10K and ran in memory of his Mom. I am proud of him for training
hard and completing it in under 1 hour. WOW! Next, he will be running half
marathons and maybe a triathlon!<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">On the running note, my
friend, Jeff, is running the 2012 Chicago Marathon and has generously offered
to run in support of Lungs For Laura! We setup a <a href="http://cota.donorpages.com/MiracleMakers/LungsForLaura/"><span style="color: #136b96; text-decoration: none; text-underline: none;">separate
donation page</span></a> for his run with 100% of the donations going to
COTA for Laura Anne M. What a swell guy!!!! Thanks, Jeff!<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">So here I am,
waiting....bored....living vicariously through others, so please if you are
bored too, make a time to stop over! Keeping positive thoughts here, over
and out!<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">XO<o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-82815578977502089132013-07-30T18:04:00.002-05:002013-07-30T18:04:17.162-05:00How to Handle Change In Medical Care?<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Tue,
05/08/2012 - 3:48pm</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">So, I found out today that
Dr. Love is leaving the Loyola transplant program in June. One kicker is
that I found out from someone who does not even work at Loyola - it was from a
third party. I would have preferred the program sent out letters as soon
as this became common knowledge in order to avoid hearsay. This is a big deal
to me - a BIG part of the reason I chose Loyola was because of Dr. Love.
I have had a not so great experience with another pulmonary surgeon
before, and so this was really important to me to find someone I felt I could
trust.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I feel a little lost
now. I hear he's moving to Milwaukee. I'm close enough....do I
maybe follow him there? Unfortunately, Milwaukee doesn't have a transplant
program yet (this is why Dr. Love is probably going there - to start one), so
following him isn't really an option, in reality. I know I need to 'interview'
and give the other Loyola surgeons a chance, but, I was really counting on Dr.
Love. I'm really overwhelmed by this news today and the manner to which I
was informed.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I know this is just
another bump in the road. Maybe I will get transplanted before June comes
and then I won't have to worry about meeting the new doctor. This is just
a very scary and fragile time for patients and to hear a member that I trusted
will no longer be there, creates a lot of anxiety.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I want to add that while
the surgeon is an important part of the journey, the after care is managed by a
very competent team that I also trust. After the initial surgery, you
work more with the transplant team. Therefore, it isn't ALL about Dr. Love, but
it's an important piece of the pie. What to do, what to do......<o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-38369989620498917542013-07-30T18:03:00.003-05:002013-07-30T18:03:43.842-05:00Ready for May<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Tue,
04/24/2012 - 4:49pm</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">When will this month
finally be over? Not quick enough for me! Joe will return home from
the Philippines and I will go back active on the transplant list and continue
my wait for new lungs. The seriousness of lung transplant surgery has hit
me a little hard this month. Before, I didn't really think much about the
surgery, recovery, and long term outcomes of the surgery - I focused more on
feeling better and doing things I want to do as a result of the successful
surgery. This month, thoughts about the long term outcomes of a
not-so-successful surgery have been weighing on my mind. I'm scared. As time
goes by, it's becoming more REAL. I will be happy when Joe is home, because I
don't think about the surgery so much when he's around.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I haven't felt very good
these past two weeks, either, which forces me to think more about being a sick
person and the sicker I get, the closer the surgery is - making it more REAL.
Dr. Love said, "if you walk into the surgery, you will walk out of
it." It's the journey after the surgery that I have stuck in my
mind....will it be successful, how much longer will I live, will I have rejection,
what is rejection like, will we be able to buy a dream home, will we have
children, is it fair to have children....at some point I just have to STOP
myself from thinking because it's a never-ending spiral of what-ifs.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I just pray that when it
is my turn, the lungs are a "perfect fit". It's a lot to ask, I
know. All I can do now is continue to work 24/7 on staying as strong as
possible. Rehab, treatments, eating, sleeping - that is everyday in a
nutshell. All I can do beforehand is get my body to the highest level of health
to increase my chances at a speedy recovery. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Thanks to everyone who
has cooked for me, walked my dogs, and called/visited while Joe is away.
I appreciate you all very much. <br />
Laura XO<o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-52719473233683667842013-07-30T18:02:00.002-05:002013-07-30T18:02:56.822-05:00Is it Adrenaline?<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Sun,
03/25/2012 - 11:18pm</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I think it's amazing
what our body can do in response to trying situations. For example, I'm
sure we've all heard of stories about adrenaline kicking in to get
yourself or somebody out of a dangerous situation.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I've been amazed at my
body's response these past few weeks to give me just the right amount of drive
and energy to take care of myself and Joe. Usually, I rely on Joe to make
dinner, wash my tubes, walk the dogs, prepare my feedings, feed the dogs, go
grocery shopping, and clean up after dinner (I know, he's AWESOME). Joe's
Mom has been ill and he has been spending many weeknights at his parent's house
taking care of her and recently, been spending almost all day at the hospital
making sure she's getting the care she needs. I was hoping and wishing
that I would be able to step up and take care of him during this difficult
time, but I really wasn't sure how my body would respond.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Like I said before, it's
amazing how mind over matter can sometimes get you through the things you need
to get done before you just crash. While I haven't done all of the things
listed above every day (thanks to my Mom for pitching in too), I have done a
LOT MORE than I usually do. I cleaned the bathrooms, made dinner many
times this week, did laundry, kept up with all my treatments, washed my tubes,
kept the kitchen clean, picked up the house, picked up food for the family and
delivered it to the hospital, went grocery shopping today, walked the dogs many
times this week (thank you nice weather), kept up with Joe's mail/bills, and
exercised.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I am shocked at myself -
I've felt really good these past 2 weeks and I am hoping it lasts. I do
tend to crash at night, but at least I've gotten through the day. I am
happy my body is allowing me to give back to Joe all the things he has given to
me. I love him with all my heart and I hope I can be the rock for him,
like he has been to me. Please pray for Joe's Mom and family and pray
that I can keep my strength to help my best friend get through this hard time.
XO.<o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-24500489299853757952013-07-30T18:01:00.001-05:002013-07-30T18:01:43.525-05:00<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Mon,
03/19/2012 - 12:15am</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<br /></div>
<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">It's been a while since
my last blog, and I guess it's good news because nothing has really been going
on! Each day has been the same...mundane. I stick to my schedule,
haven't gotten sick, haven't had any crazy feelings, and haven't done anything
out of the ordinary. All the days string together.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I do want to take time
and acknowledge all of the work that was put in to make the St. Patrick's day
fundraiser a success and <b><i>thank</i></b> my volunteers for going
out and gathering silent auction and raffle items. <b><i>Special thanks</i></b> to
Stephanie, my Mom, and Sharon for their hard work. <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Admittedly, planning and
organizing is what I love to do. I had the time and I didn't
procrastinate.....I spent a lot of my 'treatment' time using my computer over
the last 3-4 weeks to create all the signage for the silent auction and bid
sheets, choosing the auction/raffle items, making lane assignments,
coordinating the schedule, coordinating the volunteers, soliciting for
bagpipers and Irish Dancers, etc. I think Stephanie and I could turn our
event planning skills into a successful business after transplant. <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">The turnout to our event
was GREAT! I think everyone had a great time. <b><i>Thank you</i></b><i> </i>to
everyone who came out to support me! I am blessed to have such wonderful
people in my life. Pictures coming soon! Thank you, thank you,
thank you!!!! <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Laura XO<o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-86892250458169360462013-07-30T17:53:00.002-05:002013-07-30T17:53:21.730-05:00Expect The Unexpected<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Fri,
02/10/2012 - 12:43am</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">So, if you have been
reading my prior blogs, you've probably noticed that I have not been feeling
that good the past 2 months. I was getting concerned, so I bumped up my
doctor's appointment from March to today. I was expecting to come out of
the appointment today with lower PFT's (lung function) and the doctor
recommending a hospital stay for a 'tune up'.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">So, I headed in with
Paul to do my PFT's. The look in Paul's eye when I finished told me that
it was not good news, but then he said, "They're better than last
time". I said, "You're shitting me?!?!?" See, if my
PFT's are better, it means my LAS score will go DOWN, meaning a LONGER wait for
transplant, because I'm HEALTHIER. I know, I know, this IS a blessing,
but it's also a curse. Now I have to live in this world where my life is
treatments, working out, sleeping, eating and feeling like CRAP. I'm not
any closer to new lungs and being able to breathe.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I should be glad,
though, because it's always better to keep your OWN lungs for as long as
possible, since lung transplant is risky and unknown. It's just funny
that I've been feeling so crappy, but all my tests say I'm healthier.
What the hell? This disease is CONFUSING!<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">So, I met with the
doctor after my PFT and his advice is to stay OUT of the hospital since I'm not
bringing up any more sputum than normal and my numbers are up. In his
experience, end stage lung disease means one day you're up and the next you're
down with no rhyme or reason. He suggests to keep plugging along, being 110%
compliant, exercising and just staying positive like I have been. I think
he's proud that I've remained stable this whole past year.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">So, okay, fine, I'll
deal with whatever you've got for me, Life. Bring it on.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">On a lighter note, the
doctor shared with me that he had a brief in-patient hospital stay a few weeks
ago and he has a whole NEW appreciation for what his patients go through!
His list included, but not limited to: TERRIBLE food, constant beeping
machines, waiting 10 minutes for someone to turn off the beeping, being woken
up at 3 am for a blood pressure reading, and lack of assistance when trying to
use the facilities (staff acting like they're doing him a big favor by helping
him to the bathroom). He's always been super caring, but I'm secretly
glad to see he has gotten some real perspective to help him relate even more
with his patients. <!--[if gte vml 1]><v:shapetype
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alt="wink" style='width:15pt;height:15pt;visibility:visible;mso-wrap-style:square'>
<v:imagedata src="file:///C:\Users\Joseph\AppData\Local\Temp\msohtmlclip1\01\clip_image001.gif"
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</v:shape><![endif]--><!--[if !vml]--><img alt="wink" height="20" src="file:///C:/Users/Joseph/AppData/Local/Temp/msohtmlclip1/01/clip_image001.gif" v:shapes="Picture_x0020_20" width="20" /><!--[endif]--> I introduced the
concept of starting a CF Advisory Board at the clinic, and I think this
experience has made him even more open to it! I will be sad when I have
my transplant and I no longer need to see this doctor....I really like him!
We were chatting for 45 minutes today. I don't feel like seeing
this doctor is a chore, I love going! <o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-30419948583963299412013-07-30T17:52:00.002-05:002013-07-30T17:52:42.017-05:00If Only It Were That Easy.....<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Sat,
01/28/2012 - 6:33pm</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Two nights ago, I had a
dream. In this dream, I was in the hospital waking up from my transplant
surgery. I opened my eyes and immediately took the biggest breath of my
life and it felt great. So great, in fact, that I threw back the covers,
hopped out of bed and danced a little jig. Then, I woke up.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">If only transplants were
that easy....what the dream failed to showcase is the abundance of tubes I am
sure I will have coming out of my chest, a breathing tube, a massive incision,
and a very weak Laura. However, I think my dream proved a very important
point...I simply cannot focus on those things that aren't so pleasant. I
have to think positive and keep reaching for the day when I get to dance my
jig. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Speaking of dancing,
this is one of the activities I miss so much. I cannot wait to get healthy - I
think I will join a fitness dance class. These are the days I wish I were
22 again, so it would be appropriate to go to night clubs to boogie down. It's
a good thing my group of friends, whom I celebrate most holidays with, don't
mind a good 'house dance party'. It's hard for me to watch dancing on TV.
Sometimes I get really overwhelmed and I cry because I want to be able to
dance to a song that I'm really enjoying or even just dance to make Joe
laugh...I miss those days. I miss my old self. She's still in there, just
taking a 'breather'....<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;"><br /></span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-33038984092254346982013-07-30T17:50:00.000-05:002013-07-30T17:50:29.484-05:00Rough Month<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Thu,
01/12/2012 - 6:26pm</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;"><br /></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">In an effort to keep my
sanity, I am going to vent my frustrations I've had over this past month.
Warning: this is just a spill of all my thoughts as I'm typing. What you
read may not be pretty! Maybe laying it all out will get me out of this funk!<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">The week before
Christmas, I started getting a cough and more short of breath than usual.
This has started to occur during "that time of the month", so I
figured when that was over, my cough would subside (as usual). I was
really worn out the week before and after Christmas - I didn't shop for gifts,
I didn't wrap, I didn't cook, I didn't bake - this is pretty unheard of for me!
I didn't go to rehab for a whole week and the next week, I only went
once. I felt like my time with Joe was wasted (he took off work the week after
Xmas), because all I could do was lie around with cramps, no breath and sulk.
So, that didn't help my mood, feeling like I just simply cannot do anything.
Since then, I've barely made it to rehab once a week. I've been pretty
down on myself for not sticking to my rehab these last 4 weeks.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">My cough never really
went away and so I've been on Cipro (antibiotic) for 2 weeks, hoping that it
would clear my cough and bring me to baseline. Tomorrow is my last pill,
and I am feeling a little better, but I have to see if I continue to be better
or if my cough returns. I've been extremely exhausted, spending a lot of
my time sleeping or lying around. I can't seem to get any energy or
motivation. Time just flies during the day - I have all these things I
want to do, but as soon as my body is ready to do them, the day is over.
Another day lost where I didn't work out, or I didn't eat properly, etc.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">Taking care of myself is
just getting really exhausting. My chest, lungs, back and neck hurt all
the time. It's easier if I just don't move - which obviously isn't good
for me). I'm totally stuck in a rut and need something to turn my
attitude around quickly. Even though I am feeling like crap, my LAS score
went down <i>ever so</i> <i>slightly</i> (indicating I'm
'healthier'), which was just the final straw after the month I've had. My
breakdown ensued a few nights ago - crying, screaming, throwing myself into
bed, thrashing, then calming down and hugging my dogs. Then, I changed
the bed sheets to prove to myself I wasn't useless (took 30 min., but I did
it). Sometimes you just need to let it out. I need a punching bag
(although I probably don't have the energy or breath to even punch).<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">I'm lost in a fog right
now, just going through the motions. I've managed to cook dinner twice so
far this week (plan to again tonight) and do laundry. I really need to put the
Xmas decorations away. <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: 18.0pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, sans-serif;">It's getting harder to
be with people and make plans. I never know if I can commit to leaving the
house. I usually can't be ready to go anywhere till 3 pm. My brain has
been less able to handle conversation. I don't know what it is - it's
hard to explain - but my tolerance for things out of my immediate control - I
don't want to hear about (with some exceptions - all health and life issues
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in my own little bubble, but there's only certain things that I am capable of
letting in right now. I don't want to be that person that thinks,
"that's your biggest problem right now? Your TV doesn't work? You are
complaining to me about that?", because I truly understand that everyone
has something they're dealing with, no matter how big or small, and if it is
important to them, it <b><i><u>IS</u></i></b> important to me.
I don't want to lose that quality in me, but I feel like that quality has
taken a temporary hiatus for now. Don't get me wrong, I don't want people
to stop calling me, stop telling me what is going on in their lives (b/c
there's nothing going on here!!), but if I don't absorb all of it, just know
it's not you. My ears are open for good gossip and good news though! If
anyone is wondering what they can do for me, I would say making plans to come
by my house for a couple hours, bring a meal and entertain me would be a nice
gesture (call first, but after 12 noon - Tue and Thurs/weekends are generally
better days <!--[if gte vml 1]><v:shape
id="Picture_x0020_22" o:spid="_x0000_i1026" type="#_x0000_t75" alt="laugh"
style='width:15pt;height:15pt;visibility:visible;mso-wrap-style:square'>
<v:imagedata src="file:///C:\Users\Joseph\AppData\Local\Temp\msohtmlclip1\01\clip_image002.gif"
o:title="laugh"/>
</v:shape><![endif]--><!--[if !vml]--><img alt="laugh" height="20" src="file:///C:/Users/Joseph/AppData/Local/Temp/msohtmlclip1/01/clip_image002.gif" v:shapes="Picture_x0020_22" width="20" /><!--[endif]-->).<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">This blog has totally
been a rant and a spill out of all my thoughts today. Hopefully by getting it
all out there, I can start tomorrow on the up-swing and get out of this rut.
I know it is normal to feel this way sometimes, and I think I have
allowed myself enough self-pity for now. I'm going to give myself a good
slap in the face and move on with my day. At least there is a new Big Bang on
tonight - something to look forward to. <!--[if gte vml 1]><v:shape
id="Picture_x0020_23" o:spid="_x0000_i1025" type="#_x0000_t75" alt="cool"
style='width:15pt;height:15pt;visibility:visible;mso-wrap-style:square'>
<v:imagedata src="file:///C:\Users\Joseph\AppData\Local\Temp\msohtmlclip1\01\clip_image003.gif"
o:title="cool"/>
</v:shape><![endif]--><!--[if !vml]--><img alt="cool" height="20" src="file:///C:/Users/Joseph/AppData/Local/Temp/msohtmlclip1/01/clip_image003.gif" v:shapes="Picture_x0020_23" width="20" /><!--[endif]--> As a final note, I
love all of my friends and family and will always care about what is going on
in your lives - I love to care - please don't take this post as a reason not to
call me or visit me. Sometimes you just have bad days, ya know?<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">XO<o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-14046777206202695542013-07-30T17:49:00.001-05:002013-07-30T17:49:27.761-05:00Crazy Month!<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Fri,
12/16/2011 - 5:38pm</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-FYi1S-9SzVs/UfhC212-39I/AAAAAAAAAx4/VrIpXFy-5Ho/s1600/CIMG3689.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-FYi1S-9SzVs/UfhC212-39I/AAAAAAAAAx4/VrIpXFy-5Ho/s1600/CIMG3689.JPG" height="240" width="320" /></a></div>
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<span style="font-family: Arial, sans-serif;">It has been a crazy 2
months! I don't even know what I've been doing, but I feel like I've had
no time to unwind and relax. Maybe it was all of the preparations
for last weekend's fundraising events or preparing for the holidays, but it's
been a whirlwind. I can't believe it's less than 10 days until
Christmas and 3 days until I turn 31!<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">One thing I learned
this weekend is you never know who you will meet and where you will
find kindness. I met a lot of wonderful and giving people this weekend
who opened their hearts to my story and didn't hesitate donating to my fund
without even really knowing ME. I know how generous this is
considering the hard times a lot of us are experiencing. I also made
some new friends this weekend, just by them swinging by the raffle or
stopping to talk to me in the mall. I was so happy to spend
time with my friends this weekend, too - even though we were 'working' -
it truly didn't feel like work and I had a lot of fun with
everyone. I truly feel blessed for all of the love around me!<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">I even got to take in a
show this weekend at the Marriott - "White Christmas" -
which I've never actually seen on TV before. Crazy, I
know. One thing I learned from the play that I've been trying to do
since Sunday is this: Count my blessings instead of sheep, and I fall
asleep counting my blessings. It has been working wonders on getting
to sleep faster and having a more peaceful night's sleep!
Thanks, Bob and Betty!<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">So, what will I be
filling the next 10 days with? Writing cards, a holiday party, a
doctor's appointment, cooking and possibly some baking!
I'm not hosting any parties this year, but I am sure I will be
summoned to make something for Christmas Eve and Christmas Day. Even
if I'm not summoned - I will be sure to make my favorite Christmas cookie
- Pepparkakar! Yummy!<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">Merry Christmas to
everyone! Laura xo<o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-10573412325234878032013-07-30T17:47:00.001-05:002013-07-30T17:47:32.280-05:00Today Was a Good Day<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Thu,
12/01/2011 - 12:57am</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
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<span style="font-family: Arial, sans-serif;">Today was a great
day. I spent some time doing things I wanted to do - which I
haven't done in a long time, since I've been so tied to my
"normal" schedule. I started out by getting a massage, and
wow, did I need one! <o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">After that, I visited my
friend, Sara, and her new baby, Nolan. He is such a precious gift
and a cuddle-bug. I was happy to spend some one on one
time with Sara, because we are usually surrounded by our
"group" of friends when we see each other, that it was nice to
connect today.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">Lastly, Joe and
I visited Bill's Pizza and Pub in Mundelein to check out
the paper icon sale they are doing for Lungs for Laura (buy
a 'sun' for $1), eat some awesome pizza and meet the staff
and patrons who have been working so hard to sell the icons. I
felt like an episode of Cheers where everybody knew my name
(ok, I'm cheezy). In all seriousness, I felt really
blessed meeting the people I don't even know who are supporting
me. It filled my heart with joy. I took a picture with some of the
staff and patron Steve</span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8928691410504770863.post-21085013411991426972013-07-30T17:46:00.000-05:002013-07-30T17:46:18.083-05:00Useless<div class="MsoNormal" style="line-height: 13.2pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="color: #191919; font-family: "Arial","sans-serif"; font-size: 10.5pt;">Submitted by Laura on Tue,
11/15/2011 - 5:02pm</span><b><span style="color: #343434; font-family: "Arial","sans-serif"; font-size: 17.0pt; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><o:p></o:p></span></b></div>
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<span style="font-family: Arial, sans-serif;">I will open this entry
by saying that I understand it's my job now to take care of myself and stay as
strong as possible before transplant. Just because I understand that,
doesn't mean my mind is fully accepting. The interesting thing about
spending so much time taking care of myself, is that I start to feel very
useless outside of the little "me" bubble. I keep searching my
mind for meaningful things I can do during my 'spare time', from my home, that
would help the community. I keep coming up empty, and it's
frustrating! One of the most frustrating things is I never know how I
will feel physically day to day, so to commit to deadlines, going places, etc. for
charity work is out of the question at this time.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">When I don't feel my
capacity is fully utilized, I tend to get crabby because I just feel stuck in a
rut. When you go from working 40+ hours a week and having a focus, to
pretty much hanging around home, a project is needed! Things I have
considered are looking into schooling options for social work/patient advocacy,
starting an organization to help fill a missing gap in CF care, etc.
Right now, though, my mind is just a blur. I don't ever have a solid space of time
to sit and research/read what my next steps could be before I'm off running to
the next therapy.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;">After transplant, the
world will be my oyster....now I have to figure out what my pearl will be. I
hope I find my calling and I hope it involves paying it forward.<o:p></o:p></span></div>
Unknownnoreply@blogger.com0