5 Month Lung-aversary

Submitted by Laura on Thu, 05/09/2013 - 7:25pm

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!

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!

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!

Laura XO

Almost 4 Months Post Transplant

Submitted by Laura on Mon, 04/01/2013 - 6:01pm

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.

Theresa Caputo!

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!!!

Laura Rocking out with one of her FAV bands, Orgy

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.

Laura and Dr. Wigfield

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.

XO Laura

Post Transplant: 2 Month Lung-aversary!

Submitted by Laura on Mon, 02/11/2013 - 11:15am

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.

 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!

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!

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!!!

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.  

I've already become excited again for online shopping (eek), so I think that fact screams "I'm better!"  Excited for life again.....

Laura XO

Post Transplant: I didn't go home =(

Submitted by Laura on Wed, 01/09/2013 - 8:56pm

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.

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! =)

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 =).

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!

Also, I am praying for everyone that they don't get this dumb flu that is going around!! 

Post Transplant: Saturday, Jan 5 - up and down day

Submitted by Laura on Sat, 01/05/2013 - 11:32pm

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.

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.

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.

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.

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.

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!!

Post Transplant: An update over the past few days...

Submitted by Laura on Fri, 01/04/2013 - 2:58pm

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!

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.

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!

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.

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 .

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 clicking here. 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. 

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.

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!

Laura

Post Transplant: Ice Ice Baby...

Submitted by Laura on Mon, 12/31/2012 - 2:58pm

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.

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.

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.

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.

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.

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.

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.

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.

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.

Thank you again to my donor and their family, this is such an amazing gift.  I love all of you,  XO

Laura