For this edition of Sound-off Saturday, I wanted to re-post this blog from June on lung transplants. Make sure to check out the comments left by members below as I believe very good points were raised when it comes to transplant or not to transplant. I encourage you to add to the conversation.
**Here's is an email exchange between CFSteph and I about lung transplants and the mental aspect of being placed on the list. It is used with her permission. Please visit her blog to get some good insight into Cystic Fibrosis**
CFSteph:
As you may know by reading my blog I am entering the transplant stage of CF. I have really struggled with the idea of becoming active on the list.
What are your thoughts on transplants? I know you probably haven't given it much thought since your health is pretty good.
I guess I have always viewed it as a life saving operation to buy you more time. The thought now by doctors is do the transplant before you get too sick so that you have an easy recovery. What do you think about this?
Take Care,
CFSteph
My Response:
Wow, heavy question. And just so you know I absolutely love getting any and all questions and I am humbled that you would actually seek my opinion. So here it goes:
My thoughts have always been this, I'm not here for me. Meaning, I'm happy with the life I have lived and don't have a desire to extend that life by having a lung transplant. With that said however, I also don't feel like it is just my call. Like I said, I don't live my life focused on myself and I have always enjoyed blessing the lives of other people. Those people include friends, family, and strangers.
My thoughts have always been this, I'm not here for me. Meaning, I'm happy with the life I have lived and don't have a desire to extend that life by having a lung transplant. With that said however, I also don't feel like it is just my call. Like I said, I don't live my life focused on myself and I have always enjoyed blessing the lives of other people. Those people include friends, family, and strangers.
When I was younger I always said that I would refuse a lung transplant. That of course was when it was all about me. When I got to be in my late teens early twenties I said that I would get one only if I had a family and my wife or kids pleaded with me to get one. Now that I am older and wiser (haha) I have come to the conclusion that I will fight tooth and nail to keep the pair that I've got, but when the time comes, I am open to a transplant. I have been told straight up by my mom and girlfriend that it's not about me but about them :) They want me around (not sure why) and so for that reason alone I would go through with it. Now, like I said, I will do anything and everything to avoid going down that road (and as of now, I'm no where near sick
enough) but that brings me to the next part of your question.
I have always viewed transplants as trading in one set of problems for the next. I have always wondered though, "What would it feel like to take a deep full mucus free breath?" You know, the type I took when I was a young buck (or did I? I wonder that often). A lung transplant would give me that chance and as you said most likely extend my life.
Now the tricky part is timing. I have known CFers that had been in the 30 and 40 percent that recommitted their life to taking care of themselves and ended up back in the 60's or 70's. I have of course known CFers that did everything they possibly could and their lung function didn't change. So for me, I would make sure that I had exhausted all other options before going on the list
I realize where the docs are coming from and there is a lot to be said for that school of thought. Have they presented you with any studies that back up there position? If the numbers are there to support it then it would be hard to argue. I'm sure you have talked to many CFers who have had a lung transplant and it would be valuable to get there feedback as well. One in particular would be Sara over at oceandesert.blogspot.com. She's a friend of mine who had a transplant recently and would have some good info for you I am sure. I have had many other friends who have struggled with the same exact idea (as far as going on the list) so just know that you are not alone. You are having very common feelings and hesitations. I may not be the most valuable resource because, as you may have already gathered, I am very stubborn and often have a "nothing can stop me" attitude. Who knows, maybe one day that will be my undoing?
Ronnie
So what are your thought on this? I also encourage you to go by her blog and share your thoughts. Thanks
Hi Ronnie (and Steph if you're reading this!)
ReplyDeleteAhhh, the age old question, to transplant or not to transplant.. or eh, When may be a more suitable question?
This may sound ridiculously simple, but for me and from what I hear from lotsa other CF'ers is,you just KNOW when it's time for a tx.
For me, I evaluated my quality of life and actually the quality of life for those around me, when they were with me. I was SICK of being on O2 24/7. I did it for about 2 1/2 years. I also had 2 major hemoptysis that scared the dickens out of me. I didn't want to live my life wondering when the next one would come. I kept imagining the alternative of a tx and ALL the wonderful things I could do with new lungs and it had me SOLD.
Now, I was first evaluated for tx in 1999 and they would have had me do it then, but I wasn't on 24/7 O2, had had no hemoptysis at that point, but my PFT were in the 30% range. I just felt it wasn't the time.
I wish I could say there were some magic answer for "when" to tx, but honestly, everyone has their own perspective of the quality life they want.
I never actually said out loud, "I want a tx." I don't think anybody really does 'want' that... What I wanted was a more fulfilling life and everything it offers and I continue to receive that.
I hope this helps, Steph! Best wishes to you!!!
Ronnie,
ReplyDeleteBeing a mom of a CF'er I can only give you my thoughts on the subject. Garran is 8 and had his transplant on February 2, 2009 when he was still 7. this decision was not an easy one. And I don't know how I could have made it if it were for myself. But having to make the decision to Tx or not to Tx for my son was difficult in itself.
Garran has always struggled. Since birth. There was never a time when he took that deep breath that you speak of. Even at birth before he was diagnosed he was already desatting when he ate. And it was a struggle day after day just to get his lung function into the 60's, which was his highest level.
Even with daily breathing treatments and vest treatments, and controvertial types of Bronchoscopies where his Doc sqiurted the pulmozyme right on the mucus in his lung, nothing seemed to curtail the progression.
At 6 years old he went into respiratory failure and almost died, having to be placed on a ventilator and then eventually 24 hour a day O2. For a year and a half and even throughout the Tx evaluation we questioned whether this was the right decision for him. And eventually there really was no choice but to do it.
So we asked Garran if he wanted to have a tx. And although he was 7 years old, he gave us the answer that we so struggled to come up with for almost a year. He knew the consequenses going into surgery. And he knew what would happen if he didnt have it.
Even up to the point where they took him back in the OR he was trying to make us happy, all the while so scared about the fact that it might be the last time he see us.
But he showed us true strength in his actions, and I know that that 7 year old was wise beyond his years.
My purpose in this is to say that everyone is different. I have known people who have made the choice not to Tx, and although their lungs were not capable of sustaining their brilliant spirit, they showed me courage and strength that I could never attempt to attain.
Others I have known that have gone through more than one tx and have come through with more zest for life than most people I know that never have had to make that decision. Their purpose filled existence gives so many hope when they think there is none.
I hope that your friend makes the right decision for her. And that whatever decision she makes she is at peace with it. Neither are an easy one.
Coming from a parents perspective and just watching the changed being my son has become, and how much more quality of life he has now compared to his life prior to tx, I am more apt to veer toward the decision to tx, if there really is no other choice.
I will pray for your friend. And I hope that this has helped you both somehow.
You can view Garran's Tx story at www.caringbridge.org/visit/gmantxfund
Best Wishes,
Victoria
Just a quick comment. My plan is to get a transplant. I have been evaluated and accepted. I am on the inactive list meaning I won't get a call until I tell them i am ready for the call and then they will make me active.
ReplyDeleteMy view of a transplant has always been to save a life. I still have days that I feel good and they really mess with my mind. I keep thinking I will beat this and I still have plenty of life left in these damaged CF lungs. Yeah, I am probably fooling myself or as my husband says lying to myself.
What my doctor is questioning is how much life left in these lungs and what is the quality of life these lungs are giving me.
Thanks Steph and Ronnie for this post!! For me, I never refused nor accepted the idea of a transplant when i was younger. I really never thought about it to tell you the truth. And fortunately and unfortunately, my health took a turn for the worse very very quickly my senior year in high school, where I didn't have much time to make a decision. In addition, I was 18 at the time, and my parents had a say-so to a certain extent. I never thought I would ever become sick enough to be transplanted. But as you mentioned, I had exhausted all means to get better, and always took really good care of myself. And prior to my transplant, I was put on life-support, and my parents became my voice (which was fine, because we had the same viewpoints).
ReplyDeleteI had been on O2 24/7 as well and had actually become a prisoner of my own home, and was not able to do anything. I wasn't even performing PFTs at the time, and the last ones were around 10/11 percent. So for me, a transplant was going to offer me that chance to have a life and to be able to function in it and go for my dreams. I would have died within hours or days if I had not gotten transplanted the day I did. And if it didn't happen, then I was at peace with God's decision (not saying that I wasn't scared). After seeing how sick I was and how I literally was not supposed to live, I'm a big advocate of people getting transplanted before they become extremely sick. It really does make a HUGE HUGE difference in the recovery period. And I wish no-one to go through the recovery I had to go through.
But I completely understand about not wanting to give up the current life when you are still able to do stuff. I think different CF centers/doctors have different approaches as well.
When I was 12 yrs old, I went in the hospital for a quick 10-day tune-up. I was doing really well and felt pretty good. Unfortunately, I caught the flu while in the hospital, and had a difficult time with it. My CF doctor jumped quickly and made me get evaluated for the pediatric lung transplant list in St. Louis. I was pissed...I did not want that. But I also did not have a say-so. I thought I was too healthy. I got evaluated and went on the list, but later went inactive, like Summer is talking about. I stayed inactive for 2 years and my health ended up stablizing and I did pretty well. At the time, I was able to use this time on the list towards my time later on the list at UAB. But my point of this was that I was not ready and did not want to be pushed into this decision. And I'm so glad that my family and I decided not to transplant at that time.
Transplant is an awesome thing. You can take that deep mucous-free breath. But you do trade one set of problems for another, and its not a cure. But it's amazing the quality of life you are given compared to that quality of life with CF lungs. But transplants differ and are unique for each person. Each recovery period and life afterwards is specific to that individual. And you can't take someone else's experience and compare it or expect yours to do the same or the opposite. You have to be prepared for what a transplant might or might not bring. And no-one can predict it. But putting that aside, I'm a big advocate of transplants. And I wish you all the best when the time is right!!
I have had a few people tell me that if you wait to be listed until you are ready - mentally - you will never be listed. That being said I was listed and was by no means ready - but became ready in a few short weeks before my call.
ReplyDeleteFor me the decision came down to this - I still had things I wanted to accomplish with my life. I did take into account my relationships but each person in my life (parents, fiance and friends) all told me that regardless of my decision they would support it.
I can appreciate the perspective that Ronnie brings to the table but I have to disagree about having a transplant for other people. This entire process is the hardest thing I have ever done and though it is very worth it (to me at least) it is a lifelong commitment for YOU. It is not something that your family and friends are going to have to wake up with and deal with on such a personal level everyday. If you are not wanting to do it then don't let others make you. You have to want it enough to be committed for the rest of your life.
I think now the ideal time to get transplanted is when your lung function is between 25-15%. I consider that life saving not getting a transplant when you are healthy enough to survive it. When you are at that point anything - any random bug can be the one that takes you down. I think in that range you are on the healthy end of terminal and can still make it through relative well.
I tried weighing the pros and cons when it came to transplant and to be honest neither side won out. It always seemed pretty even to me. Then my fiance asked me one question. If I only got 6 months would it be worth it. I replied if I had 1 absolutely amazing day it would be worth it. I called the next week and set up my evaluation.
I had my eval and I was listed but I was still terrified and unsure if I was making the right decision. We went on a trip to Hawaii the week after my evaluation ended and I knew after that trip I was ready. There were so many things that I wanted to do while in Hawaii that I couldn't because of the tether of oxygen. I knew after that that transplant was for me I was tired of the oxygen and ready for an upgrade or to trade in my parts as I referred to it.
I think there is a pivotal question for each person that confirms what they want to do for sure. Be it a loved one that you want to spend more time with, something you want to do or what have you for most everyone there is a reason to be transplanted or to not be if they choose that route.
Either way I still tell people when they ask if I would do it that I would do it again in a heart beat if I had too. To ME it is worth it 1000 times over, BUT you must make the decision for yourself. YOU have to live with it regardless of whether the outcome is good or bad you have to face the challenges everyday no one can make that decision for you. Regardless of what family and friends may want you need to choose for you and then once you make your decision be committed to it.
I can only hope that regardless of what the decision is that your family friends and other loved ones respect it and support you for it.
Best of Luck to whoever may read this and regardless of health status if you are ever facing transplant I hope that your path treats you well. It can be challenging but it is worth it.
Lindsey
Also wanted to add in response to Ronnie's comment about deep clear good breathes when he was younger or "healthy".
ReplyDeleteI remember my first breath post transplant and it wasn't all that great but within a few days I was breathing better and even now breathe better than I have ever breathed in my life - even when I was "healthy".
I was around 22% when I was transplanted - I dropped from 29% to 22% in 6 weeks (the length of time I was listed). I was around 60% within a month of transplant and am now 2 years out and am at roughly 90% and have been since I was 6 months out from transplant.
The difference is that now there is no mucus and there is no inflammation. I don't feel tight chested like I used too even when I was healthy. It is amazing and hard to describe but I will just say I didn't know that this is what breathing was like. I remember always trying to describe what it felt like to breathe with CF lungs and now I laugh because to someone that has always been able to breathe the way I am able to breathe now there is no accurate way to describe the difference. The breathing through a straw thing is not even an accurate description.
Just wanted to put that out there cause I just remember being amazed at the difference it wasn't what I thought at first - because of the recovery and the fluid that had to drain off my lungs at first, but as it changed I was dumbfounded.
Lindsey
Please don't have a transplant for anyone else but yourself.
ReplyDeleteTeeda
Duke Tx #481
12/15/2003
Yo! I just recently started frequenting your blog, and am a fan of your positive attitude. I firmly believe that being positive about one's experience/health/etc has an effect on the potential outcome of the situation. Anyway, I see a lot of positive comments about transplantation here and I want to add my own experience.
ReplyDeleteI decided in December of 2007 to be listed for a transplant. I agree with a previous post that at that point, I just knew it was time. It was either transplant or the alternative, and I wasn't ready to leave this life for the next quite yet, if it was God's will. My FEV1 was at 19% and fell to 15% before actually receiving my donor's lungs - the call for the transplant came less than a month after being listed as active. I can't believe now that I survived at this lung function, but hey, people (especially those with CF) are capable of miraculous things! I won't say it was easy immediately after the surgery, because it wasn't. It was very difficult and at times, painful. But compared to a lifetime dealing with CF and its accompanying aches and pains, this was nothing that couldn't be handled.
Having said that, I'm at my highest FEV1 and FVC a year and half later, and living a higher quality of life than I ever dreamed. The smallest things are heavenly to me now - I still pick up extra napkins from restaurants, etc., out of habit - you know, just to have something to spit the muscus in - but they're not needed any more.
It was terrifying making the decision, though, because of that unknown factor. At the time, I did not know another person with CF whose transplant had been successful and I wasn't involved on message boards or any kind of group. But there ARE people who can say that this works, and works so wonderfully its almost inconceivable.
I'll keep following your blog and wish you the best as we all keep swimming, as Dory says in Finding Nemo. If anyone would like, I kept a website during the transplant process, and still occasionally update, at www.caringbridge.org/visit/heidikarnbarker.
-Heidi
??????Very good question. I am a double lung transplant as of May 17,2006. I am very thankful to be here and breathing. I am enjoying my wife of 4 years, but at the time we were married only 9 months. My wife married a dieing man with only one year to live. Would i have done it again, or at all...NO....I have traded one problem for another. Now, please understand my situation is extremely different than what most cfers go through in transplant. I was a rare case that did not go as planned. I was told i would never have to do iv's again or nebulizers again, but they lied to me. Well I am playing, but like i said i am a rare case. I was hoping my life would be transformed, newly married and wanting to explore life with my wife. Unfortunately, i stayed in or around the hospital for 6 months with recurrent bouts of acute rejection and infections. At this time I am alive, but i am in stage 1 chronic rejection and have just gotten out of the hospital for the 6th time this year. Please do thoughtful consideration. Plan, do your fundraising and contact local transplant organizations. Do not get me wrong i am thankful to be alive and sharing my life with my wife. I just wish i could be truely free from CF, but i am thankful to Jesus Christ for allowing me to have this disease, because i have been able to testify and minister to many people. With love and courage to you. God Bless
ReplyDeleteHello,
ReplyDeleteThis is my first time here. Great blog and very interesting and helpful. I have a similar story and was transplanted about 7 weeks ago. I debated the timing and tried to prolong it as long as possible, but eventually I just knew it was time. If anyone is interested to read my story you can go to www.checkonmitch.com it is centered more on the transplant and not my battle and pre-transplant life.
Like others have said everyone has a unique outcome. Although I am doing quite well, the first 4-5 weeks were extremely tough despite no major medical complications like rejection. I still have some underlying issues with the new lungs on one side, but my breathing is so much better. I can already do so many things than before transplant and it gets better basically everyday.
Good luck with your journey.
-Mitch
Hey
ReplyDeleteI'm 15 years old with C.F. and because of lack of veins ive just had a Portacath implanted in my right side, evrything is going great at the moment but im still not out of hospital so i have no experience of living at it in the home does anybody know what happens at home e.g. is it painful having it flushed every month and does it get in the way of any every day activities. Im very happy with it at the moment as ive had 2 weeks of treatment and got my FVC up from 61% to 100.9% :-) .
Great blog thanks for the tips awesome blog
- Ross
First I need to come clean. I don't have CF. That said, I was put on 24/7 oxygen at 29, worked, had a baby, but the time came when I needed to make a decision to live or to die. My daughter was 21/2 when I listed and just 4 when I had my transplant. And boy have I lived. She is a senior in high school now, my husband in a job he likes, I retrained to a job I love working with visually impaired and blind children. Life is a risk. I was so afraid of transplant and my story is individual- many people have way more problems than I have. I don't say I am blessed because that seems to imply that all who don't do as well are cursed- and they simply are not cursed. It is a personal decision. Investigate it wisely.
ReplyDeleteKathryn
bilateral lung Duke 1996
Now age 51
When I was in kindergarden I met my best friend. She had cystic fibrosis. At the time the doctors gave her a life expetancy of 10 years old. At the age of 12 years old, Jessica was finally at the top of the transplant list. Sadly, she refused it. Her excuse was that she didn't want a big scar and she didn't want to have to take any more medicine then she already had to take. She lived a good life, but sadly in 2000, one month after her 16th birthday she lost her battle. Jessica was one of the strongest kids I have ever met, and I am so proud that I can say that she was my best friend.
ReplyDeleteI feel like the definate minority here but I have no desire to have a lung transplant. I am 41 and doing fairly well. My bad days are slightly increasing and i do have hemoptysis issues. I do not believe I am scared. I also fully support and am so happy for all who have had transplants! Ithink we are so lucky to live in a time when this lifesvaing procedure is available.
ReplyDeleteI also am blessed with awonderful husband of 18 years and a 14 year old son. Whenever I say I have no desire for a transplant people get upset with me. I get comments like you will not know til you get there or just wait I bet you will get one. I really do not believe I will. I am happy and have a positive attitude. I have fun in life but just do not believe that is the road for me. I would welcome comments and would love to know if anyone shares my feelings or at the very least supports them.
Thanks
Sharon