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

Post Transplant: Saturday, 12/22 and I'm Feeling GOOOOOOOD!

Submitted by Laura on Sat, 12/22/2012 - 10:15am

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.

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!

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!

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!   

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!

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!   

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 =).

Okay well, logging off for now, looking forward to the day.  Love, Laura  xxoo

Post Transplant: Friday's Update, so far!

Submitted by Laura on Fri, 12/21/2012 - 1:36pm

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.

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.

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!).

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 =).

Thank you for everyone's continued thoughts and love.  I really appreciate you all!!!!!  

Laura XO

Pictures from my first walk, lots of cords!!:

Happy Thanksgiving!

Submitted by Laura on Sat, 11/24/2012 - 2:10am

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).

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!)  

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 ).  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!

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.

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?

Laura  xo

Why Wait to Give Thanks?

Submitted by Laura on Thu, 11/01/2012 - 11:54pm

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?!

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?

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.

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! 

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.

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.

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! =)

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

Am I Losing My Hearing?

Submitted by Laura on Tue, 08/28/2012 - 11:59pm

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.

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.

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.

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!

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%. 

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