Transplant and emotions

[nocode]

Hi all,

I am almost 30 and about to begin my transplant journey. Will get evaluated next month. This is opening a can of worms with a lot of soul searching type questions and thoughts, which I believe to be part of the process.

I would like to hear from people who have received their transplant and how was it for them in terms of moods/feelings, both before and after the transplant. What kind of feelings can arise after a successful transplant, after the initial shock and medications wear off?

All my life I have not been able to mentally conceive a life where I do not have limitations; and even though I am a long time away from actually receiving a transplant, I am already beginning to think about these things.

Thanks for any input.


Vera

 

[LittleLab4CF]

I don’t fit your criteria. I haven’t had a transplant, nor am I ever going to. Your post seems so lonely, I thought I might open with a thought or three.

Almost everyone with CF has experienced a flare that ended up being the new, reduced state of health. I am trying to come to grips with this myself so to a degree I am projecting my own feelings. This flare may be my last. Oh God, how many times have I murmured this? When you feel like your breathing through a pillow or your large intestines are eating the small ones, it's easy to wonder how long you can hold on.

This is the ultimate journey to new lungs and a long, healthy life. You don’t want to go through a transplant. Nobody would embrace such a life changing one way trip. When you are breathing on new lungs, a catharsis awaits like no other. You know all this intellectually, but suspending belief in it all happening to you is a coping mechanism. With all the weight on your mind and body, coping mechanisms are important and often needed.

Any single issue surrounding a DLT is staggering to contemplate. This is validated by your transplant team. So many people with refined expertise are addressing possibly just one issue each and you are balancing them all.

What a gift! I mean your great attitude, not the lungs although they are central to your future. You are worried you won’t be as active post transplant! By the force of personality alone, you seem to have a gift of boundless energy from some unknown source.

It will still be there after the transplant, just different if my guess is correct,

LL

 

[nocode]

Hi. Thanks for your thoughts. I didn't expect much of a response to my post, but decided to venture anyway. I think it must be difficult to explain in words the possible clusterf*ck of emotions that people go through in such a journey. Humans have always had difficulty dealing with the unknown, and waiting for a double lung transplant is smack dab in the middle of that.... completely unknown. Did I understand right that you don't want to get a lung transplant, or you can't?

 

[sugarcookie]

Hi. Thanks for your thoughts. I didn't expect much of a response to my post, but decided to venture anyway. I think it must be difficult to explain in words the possible clusterf*ck of emotions that people go through in such a journey. Humans have always had difficulty dealing with the unknown, and waiting for a double lung transplant is smack dab in the middle of that.... completely unknown. Did I understand right that you don't want to get a lung transplant, or you can't?

Vera, I am in the same place as you. I have my first consult with the transplant team in a few weeks, and it's really scary. I knew over the past 2 years my health was declining a lot, regardless of all the work I would do in the way of treatments, IV's, everything. I sure wasn't ready when my CF team first approached me to meet with the transplant team. It took me a good couple of months of them bringing it up for me to finally have digested that YES, I do need to meet with them and get the ball rolling. I think once we have our meetings with the team and get lot's of unanswered questions addressed, then we can do some more digesting and accepting and move forward. Information and education will help us with "the fear of the unknown". At least to get through the surgery. One day at a time is all that is expected of us.

My biggest problem is that I watched some video cast from a lady with CF talking about her double lung transplant, I can't think of her name but she wrote a book called Sick Girl Speaks. On that video cast, she showed pictures of her in the ICU immediately after her transplant (she insisted her family take them) and I did NOT need to see that. The picture was horrible and for the life of me, I don't know how that could help anyone who is gearing up for a transplant.

Since we are in the same place, feel free to send my messages and maybe we can help each other out through this difficult and scary time.

One other thought, I think we are in the worst place now, I feel bad all the time, yet am not ready for a transplant. This in-between stage bites the big one.

OK, one more thought, I am not sure why no one really replied to your post. Thank you LL. I thought more people would have input.

Question for LL, you don't have to answer but inquiring minds are curious, you mentioned you will not have a transplant. Personal decision? I totally understand. Or maybe you don't want to burst anyone's bubble with information against having a transplant, and I realize there are negatives and positives to having one. When I was healthier, I always thought I would never have one, but now that it is my only option, I decided to have one.

 

[jipleary]

Take lots of pictures and or videos/clips. I don't know how open you are but I enjoy talking about it and showing my scar and pictures etc. But more importantly, everyone else I know really appreciates the pictures. They all care for me and want to know how I'm doing and how it went. I feel like they have a right to know if they care about it. So all the pictures I took are really helpful in telling my story to my friends/family. I keep them on my phone and show them off all the time.

Even if you're not the type how is comfortable sharing it with others I would still recommend taking lots of pics. Even the bad stuff, and the times you were/are at your lowest. I look back at those pictures and they keep me grounded and constantly remind me how lucky I am to be alive and motivate me to not waste my new life.

So that's my input. Take lots of pictures of everything and everyone. and check out my blog written by my GF, my mom, and me. http://ddunne-transplant.blogspot.com/

 

[jipleary]

This is probably obvious but I'm a CF patient post-transplant. Just to clarify
Double lung tx on 01-09-13

 

[LittleLab4CF]

jipleary,

I could use some help here, got anything more concrete than a wonderful smile? Oops, your larger post wasn't up on my computer when I posted this. Thanks for the cool post.

LL

Nocode,

My lungs are great for a CFer. I am not in need of new lung or two. For as long as organ donation has been available, I have been listed in case of an accident or such. Since I wasn't diagnosed until age 52, I bought whatever diagnosis like IBS, chronic sinusitis and asthma that my doctors had been treating me for, not knowing the real mess my body was in. My lungs were excepted from donation because of "ground glass scarring" and several rosette scar patterns throughout my lungs. This is from the usual infections and they were considered unusable for transplant. I like them fine, my numbers are good although each breath is a new experience in pain. The majority of my issues are from the diaphragm down. My lungs are radio opaque and my bones are not thanks to a lifetime of malnutrition/malabsorption.

My experience with organ transplants is limited to kidneys and primates. I understand the mechanism of an organ transplant and it is overwhelming at first. Even with primates, I was imagining future human patient’s joy and terror over something so transforming. Not much feedback from an animal you are coddling as much out of guilt as compassion.

You look at your comparatively unblemished body and wonder how they could possibly open you up, remove your lungs without losing its oxygenating qualities or damaging little things surrounding the lungs, like the heart, and major arteries, and still put you back together better than ever?

Trust in your transplant team is important for you and them. In so many ways, they feed off of your success. They also feed off your zeal for life. Beyond that, you are feeling particularly mortal with all the reinforcement of the preparations going on.

Welcome to the moon the weather is fine!

Oh, you only have one untested engine to get you back!

LL

 

[musclemania70]

Got a tx in jan. It came quickly. I was on the list for less than 2 weeks. My lungs failed rather fast.
I am soooooo glad I did it. I was too out of it to be scared. After it was so difficult for me to recover. I had lost 20 lbs-got down to 89.
Make no mistake, this recovery is not a walk in the park. But after 7 months, I am running 2.5 miles and I am soooooo glad I did it.
Even through life support, ecmo, and pain for 4 months after, i would do it again.!!! I can breathe so easily!!!!

 

[nocode]

Hi musclemania70, thanks for your reply. I was quite surprised when I read a few months ago that you had gotten a transplant after just 2 weeks on the list. It all happened so fast! I hear a lot of people mentioning that the recovery is a long, arduous road and I understand in part why, but would you mind pointing out the things that make it so hard? Assuming that there are no complications. I am assuming not everyone has complications but I could be wrong.
Thanks and good to hear you're doing well!

Also, being on life support and getting the ECMO happened before or after the transplant?

 

[musclemania70]

Life support and ecmo were before tx. I was off the ventilator within a couple days after surgery.
For some reason, one of the meds was causing severe muscle pain after tx. Once the med was stopped, I was magnificently better.
It was hard for ME because I had lost so much muscle mass and I couldn't even lift my leg up in bed I was so weak.
Then I kept failing my swallow test which meant I had to keep my feeding tube for several weeks after tx. THAT was frustrating.
However, once I got out of the hosp and back to a hotel, I was on a fasttrack to healing.
I did have some mild rejection but the steroids took care of it. Tomorrow I should find out if I can finally stop my nebs. First time in 20
Years I won't have nebs!

 

[BreathinSteven]

Hi Vera! (And everyone else who commented on this interesting thread!)
I probably began my transplant journey at around 35. My lung capacity was probably between 30-40%, then I had a bad pneumothorax from which I never regained much capacity - followed by a substantial hemoptysis – the combination dropped my lung capacity to between 10-15% and lined me up for transplant. Like a few others mentioned here – I was put in a position where there was no other choice besides choosing to allow it to take me down. I chose transplant.
Unlike Musclemania – I waited a substantial period of time after that… I was 37 after all the above occurred and I was listed. I waited almost 3 years for my new lungs. I was transplanted 4 days before my 40th birthday. I’m 53 now – I’ve had my beautiful, new lungs for over 13 years.
Deciding and waiting for transplant, I’m not sure about all of the moods. I don’t think I had much anger – I would say mostly resignation. I just knew what needed to be done and had to keep myself as healthy as possible to be able to have it done. I know there was plenty of fear – but not so much over the surgery and the process – the fear was more that I might not make it to the surgery. I’d been assured by other patients in our group that pain is dealt with, and the crazy scary pictures and tubes and all that goes with it are generally survivable – and quite soon you don’t even remember them.
My recovery was quite good and strong – I was out of the hospital 6 days after my transplant – I walked a mile 2 weeks after transplant – I walked 2.5 miles in 85 degree heat and humidity 3.5 weeks after transplant, carrying shopping bags! I vividly remember less than two days after my surgery – sitting in my hospital room, without oxygen (on room air) and looking up at the monitor and seeing my O2 sat at 95 and I cried. Without O2 for the last 2-3 years, my sat would have dropped to 60 or less.
I don’t know if it was the prednisone or other meds – but I was emotional immediately post transplant (and maybe still today – but not nearly as much…) I was generally VERY happy. We’d be standing at a street corner and my wife would look over at me, and I’d have tears flowing over my cheeks and she’d get worried – and I’d have to tell her they were happy tears, I just couldn’t easily control them…
I’m with you that, all my life I’d never considered not having limitations. I don’t think I understood I was “struggling” – I never knew a different way of life. Life got progressively worse for almost 40 years – I never knew that life could get better – I only knew life got worse. I never imagined it could feel this amazing to just breathe. I never knew life could be this easy…
Some of us go through life knowing that the threat of losing your life is always hanging out there on the horizon – oddly, I think that for some of us, that helps us savor the things and the people surrounding us. It’s still hanging out there because life expectancy post transplant sometimes ain’t that hot – but the quality of life is potentially so much better after transplant. And the probability that it will be so much better is very high.
I’ve had my beautiful, new lungs for 13+ years. I just got a beautiful, new kidney last year – because the cocktail of drugs gradually destroyed my already-compromised kidneys. My lung donor was a beautiful girl from Iowa named Kari, who was 17 when she passed away. My kidney was given to me by one of Kari’s friends. If I had to do everything over again – I would hope to travel down the same path I’ve taken.
I don’t know when you’ll be listed, Vera – but I hope you get what you need, when you need it – and I hope your journey is as amazing as mine has been. You take care – stay strong and healthy (as possible) while you’re on this journey – do as much exercise as you can manage, and keep your weight up – those two factors will have an incredible impact on your survival to and through transplant. Love, Steve

 

[Smile769]

There are a lot of things about the transplant experience that can only be told by those who actually went through it and even though you prepare yourself no one is ever really ready. When I started my transplant process I had been out of college for almost 2 years without ever having been able to land a job so I was not exactly in the best place mentally before my transplant and I was getting sicker and everything I did was not bringing me back. I was probably depressed but would have never admitted it at the time. However when I first started seeing my transplant team I came to them with tons of questions about everything. I had read a lot of things on the internet about things you can and cannot do, medication side effects, etc. This was January 2011 I was 23 years old and I did not really think I was actually ready for a transplant I thought I had at least a couple years left before I would even have to be listed. My lung functions were in the mid 20s but they were pretty stable. I had also started an appetite stimulant because there was no way I would have ever made it through a transplant at the weight I was. So when I started to gain weight I had so much more energy and I felt so much better. However I continued to get sick and my lung functions started to decline. By June of that year I was using oxygen when I slept and everything was hard to do but I always pushed through it and adapted to my inability to breathe. I feel sometimes the decline can be such a slow progression that we CFers adapt to it and don't even realize that we REALLY CANT BREATHE. In November it was suggested I finish the testing to be listed and I was stunned because I was not even on O2 24/7 at this point and I thought it was one of the requirements. So I finished the testing and during the next month I ended up on o2 25/7 so definitely listen to your doctors, they know what they're talking about lol. I became active on the list in January 2012 and received my transplant on May 31, 2012. I was taken on the vent the next day and up walking. I only spent 8 days in the hospital and was home in time for my 25th birthday. I'm not going to sugar coat it, my transplant recovery was not good, but also very very rare. However, I will say that my actual surgery and my lungs never had a problem. Every time I had an xray my doctors would say how it never even looked like I received a transplant (in a good way) My pfts before my transplant were 19% and in 3 months after my transplant they jumped to 88%. Everyone's body is different and reacts to medications in different ways. I usually experience a lot of side effects from medications so it took awhile for my body to adapt. I also had other problems with my stomach that weren't really transplant related but took a really long time to resolve and in the time I lost a lot of weight and was in and out of the hospital for dehydration. Finally after about 6-7 months I was starting to really recover and get my strength back. During the time before my transplant and the first 6 months after my transplant my emotions were all over the place. Before my transplant I became accepting of my fate and was ready. I never experienced any anxiety or fear. It was a lonely time for me though because unfortunately when people go through tough times especially when they involve being sick a lot of people turn away. And so I realized a lot about people and myself, who I could count on and who I could not. I think everyone goes through something like this at some point in their life, unfortunately mine happened when I was young. A lot of people will always say that they "don't know how you do it" but I think we as Cfers are born to fight. We have been fighting this disease our whole life (or most of it) and I think going through one more thing, though difficult, is a good choice. Despite my very difficult recovery I would not change how anything happened for the world. I am a firm believer in everything happens for a reason. I feel so good now, there is not a day that goes by that I don't realize something I can do that I haven't been able to do in years or ever. Even being able to just stand in the shower. Its really the little things that make you appreciate this gift so much. I feel amazing and I am the happiest now that I have been in years. I would say that my donor didn't just give me the ability to breathe again but brought me completely back to life as a whole.

 

[nocode]

Hey, thanks for the info. I'm glad to hear everything seems to be falling into place for you. I didn't know we had to continue doing our neb treatments after the TX, is this the case for everybody?
So what was your outcome?
My TX team told me that after TX, if everything goes according to plan, for the first 3 months I will have weekly appointments, the next 3 months every 2 weeks and so on. I would imagine this also takes a toll on us, always going to the doctor, but it's part of the process. Is it the same in your TX center?

Thanks once again.

 

[BreathinSteven]

Hi Vera!!!

Different centers have different protocols - and protocols are often changing and evolving... The nebs I had to do post transplant were NOTHING like those before... We sometimes deal with a steroidal inhaler - sometimes some mucomist to loosen things up - but I really don't recall much in the way of nebs, and definitely not for long... But, I guess you have to be aware/prepared that it might happen...

Yes, there is a lot of follow-up in the months after transplant - the routine you mentioned doesn't sound far from what happens... If you have a spectacular recovery, it could be less... If you have more bumps - could be more... But, a thing to consider - we were in end-stage cystic fibrosis... Before transplant, every single day, we were getting a little worse... Post - sometimes it seems like two steps forward, one back (or more) - but every day, were generally getting a little better... Yes, it can and likely will take a toll - but in the grand scheme of things, I believe it is very worthwhile. Most of us have been through a LOT worse in our CF "careers" - recovery from transplant takes some time, but the end results can be mind blowing after so many years of being unable to breathe...

you take care... Good questions... I believe the best way to deal with this is understanding what lay ahead - you're doing that... Love, steve

 

[athletixbc]

I only had nebs for three months post transplant (tobramycin) and then the discontinued the nebs. I still have ventolin in case I need it, but haven't needed to use it yet.

I had mentally prepared myself for transplant long before my CF team broached the topic with me. I knew by my early 20s that when the time came, transplant was something I had to do. Given the likely outcome of the alternative, it was a risk I was willing to take.

When I had my transplant five months ago, I remember being prepped for transplant. They did bloodwork and X-rays and an ECG. Then shortly thereafter as the orderly passed my stretcher off to the surgical nurses waiting for me outside the ER, I looked up at one of the nurses and said to them "I guess shit just got real." Once in the ER they talk to you for a few minutes and then they put a mask over your face and say to think happy thoughts and that's the last I remember until waking up in recovery. I came out of surgery at about 8am, was off the ventilator by 4pm the same day (but still had nasal prongs with minimal oxygen), and was up walking the hallways of the post transplant ICU the following day with the aid of a walker. A few days later I was weened off supplemental oxygen completely. It turns out I hadn't needed it at all post transplant but the nurses humoured me because I said I felt more comfortable with it than without it. Apparently after using oxygen 24/7 for many years you become mentally needy of it, not just physically. There was some pain for the first couple of weeks but in my case it was minor enough that it was easily controlled with morphine and/or tylenol. My pft's gradually increased over the first six weeks post transplant as the grafts of my new lungs sorted themselves out. I peaked at 108% about two months post and today my pft's were 106%. Have been stable at 106% for a couple of months now.