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The Harsh Realities of Lung Transplantation
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I am in the process of qualifying for transplant and getting tests after tests. I just got my angio and one of the arteries is clogged 70-80%. Was suggested to have stent. Will that disqualify me from getting a transplant?
has any one had such experience?appreciate your feed back?
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Hi Kris: usually a heart catheterization of both left and right sides is a pre requirement for a lung transplant. Alot of times if a stent is required, that will be done during the catherization. I’m thinking once the stent is done, you could proceed with the transplant testing process. Just my opinion.
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If they suggested a stent it will likely not disqualify you. If they do it before you will likely have to wait for approx six months as you will be on blood thinners. Sometimes they take care of it during the Tx surgery depending upon age.
at my evaluation I had two over 60%, did not have stents , still don’t and that was 4 1/2 years ago
good luck on your evaluation
blessings
Chas
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Thanks Chas for your feedback.
Can a stent patient be with out blood thinners and use alternate medication?thanks
kris
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That should not disqualify you. I’ve seen it come up in conversation here before and the recipients had no problems with tx due to stents. Can’t remember who it was or I’d tag them, sorry.
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Thanks Christie. Good to hear that stent will not stop the tx.
thankskris
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Thanks Dave!
They did not do the stent as part of catheterization as they wanted the referring cardiologist to opine on it and she was not available.
I just wanted to confirm. Thanks
kris
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Hi Charlene,
It’s been a while. I hope you doing as well as possible. Given that I have had a recent exacerbation that brings me closer to having to make the decision, this is a timely topic for me.
There are a couple of issues for me regarding a transplant. As others have said, it is NOT a cure, it is, at best, a temporary respite (as so well described in James’ response above). Having recently gotten divorced and moved to Florida, my support system is tenuous at best. Yes, my mother is here, but she is 84, has her own IPF to deal with, and is in no position to help me during surgery/recovery in any meaningful way. My brother is also here, along with his wife, but they also have health concerns of their own. I still have (at least for now) a very good group of friends down here, but there isn’t anyone who is able to devote the kind of time and attention I will need post-transplant. This of course means I will need to hire someone, which is certainly not conducive to my stretching my retirement savings. So there’s that.
Then there is the usual mix of limited successes, long rehabilitation, and shortness of time before preparing for the next transplant (if that is even a possibility). All in all, not a rosy picture.
But, I am still alive and kicking, still living my best life, and still taking advantage of what every day offers. They will have to work harder than that to beat me!
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Hi @ernie-kully,
So nice to hear from you! It feels like a lifetime ago we were able to connect at the PF Summit in Texas, doesn’t it? Thanks so much for writing!
Sorry to hear you dealt with a recent exacerbation, that’s terrible. Do you know the cause, was it “just” disease progression or something viral? COVID has really changed my lungs since I came down with it earlier this year, it was terrible. I hope you’re starting to feel better!
Yes, there are certainly a lot of considerations with transplant and I think we do ourselves a disservice to not weigh out both the (obvious) pros and cons. Sorry to hear of the divorce and move Ernie, that’s a lot to take in, especially without a large support network. I wonder if the hospital social worker might have some ways to help you consider all the options, despite these concerns? My transplant social worker has been amazing! The choice is so individualized though, so I hope whatever you decide is the best for you.
So great to hear from you – thanks again for writing 🙂
Char.
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My double lung transplant was in October last year. I am currently halfway through a rehab program.
On some of the issues raised:
I had chronic HP, which is a form of PF something like IPF as far as symptoms and prognosis is concerned so my experience might be relevant to others. I had been following a rehab course to improve my general overall fitness and I was feeling quite good, being able to function without oxygen except for some of the rehab exercises.
Then it struck. I get pneumonia from an opportunistic infection which also provoked an exacerbation, that reduced my remaining lung capacity by a quarter. I was admitted as couldn’t emergency patient and transferred to an ICU. They tried high-low oxygen and a megashot of medrol and antibiotics to see if they could get some recovery. The condition stabilised but at such a low level that I couldn’t do anything without at 6 litres of oxygen and more normally 10 for any exertion (walking, washing myself, eating).
They told me the only way out of the situation was a lung transplant and that I would be put on an emergency waiting list since my life expectancy was now very low.
So I signed the consent forms and went ahead with it.
Here I am six months later, at home and feeling fit and healthy. The operation itself wasn’t terrible, the main issue was post-op rehab, since you lose a lot of muscle tone.
Immunosuppression is a pain because the drugs have side-effects and there is a long list of things that you cannot eat anymore. The hospital has a monthly clinic, where Immunosuppression is adjusted.
The hospital’s 5-year survival rate is 86% about 50% for 10 years. I recently met a patient who had a heart-lung transplant 30 years and she is still in reasonable health.
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I was diagnosed with IPF in 2017 and did well for two years. I couldn’t tolerate OFEV or esbriet. Late 2020 I started going down hill rapidly, so at age 68 was evaluated for transplant. I had a single lung transplant and a complicated 45 day hospital course and was discharged with a feeding tube and bipap machine. The feeding tube was removed at 5 mo and just stopped bipap at one year. At 13 mo’s I hiked up Seneca Rock trail and while I was moving slowly I was able to make it. I feel good and definitely am glad I had the transplant. I just move slower and rest more than I used to. I wanted to have the time with family and friends. I’m careful, but am going out more – just continue to wear a mask. I take one day at a time and try not to worry exsesivly about cancer and rejection. I think everyone has to decide what is best in their situation. In mine my family wasn’t willing to let go yet.
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I was diagnosed with IPF August 2021. Of course I was told I was told I had the disease for about 5 years. Was put on ofev and 24/7 oxygen. I decided to get listed for a bilateral lung transplant WOW! I’ve always been in good shape, never smoke or worked around chemicals. Yet this disease found me. April 23, 2022 I received my new lungs. Post transplant is a bit rough. I keep a positive attitude and zoom with a support group. I’ve met people you are 5 years post transplant and living well, despite the medication they will be taking for life. Being able to breathe without the oxygen tanks is such a relief. Keep positive enjoy as much life as you can and there’s nothing wrong with second chances.
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I’ve had IPF since 2016, don’t take ofev or Esbriet. Just was ordered Oxygen for exercise. Went through the transplant work up 2 weeks ago..getting a stent tomorrow. Hoping for good news. I definitely want a second chance.
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I’m 54 years old fitness trainer who got COVID last December. I’m facing lung transplant option. Found out I have PF, Sjögren’s syndrome and onset of emphysema. July 14th a extensive cat scan to see how much damage there is plus lung stress tests. Been on 40 mg prednisone for about a month then tapered off. Down to 20 mg. Plus started Cellcept about a month ago and up to 2000 mg a day with weekly blood tests. Cough has gone done immensely. Started back with exercise a month ago to try to up my oxygen levels and was able to do 5+ miles few days ago. But usually do 3-4. I use my oximeter so I can keep track of my HB/OS. So more 3-4 min breaks but I’m getting through it. Added incline of 7 at 4 speed. Trying to keep prednisone weight down even though I’ve still gained about 10!lbs fast due to starting off 40mg right off the bat. Now at 20 mg still have the weight, but not going up. Moon face but think it’s going down little bit.
Cellcept takes 3-4 months to really work. But can feel effects like I have to watch how I move because my hands, feet, legs can cramp up, Acid reflux, nausea, insomnia, back pain. mom in NC. Healthcare sucks here. But that is a whole other box of worms I’m dealing with. Trying to get into Duke university. My aunt in California had me forward my medical records to get so she could show her doctor and he came back saying I need to put myself on the list since I’m so young I’d be a good candidate. But I’m scared to death that could be the end of me. Like people are saying you’re giving up one thing for another. And does that almost automatically give me a life expectancy time line? Why do it if it doesn’t get rid of the PF and your put on meds the rest of your life that alone could kill you? Very scared for my future. And my home life is very stressful as me and my husband have been fighting constantly. Trying to stay positive but very hard some days. -
Hello, Jade,
I am so sorry to read of your troubles. These forums and the columns can be helpful, especially if you are feeling alone. You are not! I refer you to a column here written by my daughter, Christie Patient, ” Busting 4 Myths about Lung Transplant. ” She conferred with physicians on my lung transplant team to ensure accuracy. Transplant does not mean an even trade with one terrible disease replacing another! I am 3+ years post DLT, (double lung transplant.) I do not require supplemental Oxygen, even living at 6200′ elevation. I am 72 years old and just rode eleven miles on my bike. There is no sign of IPF recurrence, and I have never heard from fellow transplant recipients ( on the Facebook UCSF lung transplant support group) that any of them have developed IPF again. Yes, we take a lot of meds, to halt rejection, protect against infection, and ironically, to counter-act the side-effects of the anti-rejection drugs. We live with a few life style restrictions, such as no gardening, mask-wearing, and dietary, but all are manageable. With your age and healthy lifestyle, I would think you would be an excellent transplant candidate. Social services are also provided by transplant teams, and perhaps both you and your husband/family could benefit from some counseling. It’s not an easy road, but so incredibly worth it! You are barely past the halfway mark on your life journey. I truly hope you will find the encouragement and expertise you need and deserve. Best wishes, and please stay in touch with us.
Holly
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- Thank you Holly. So glad your transplant turned out well. It’s a hard decision for me to make that I’m not sure I want or can deal with that. I know it’s manageable but not sure I want to lose such a big part of my life. Masks I never could take and to think I’d be stuck wearing them forever I know I’ll have big issue with. I have to go outside at the doctors as it is because they’re so stifling to me. And I’ve always been a foodie. Loved cooking, eating out, finding new things. So there would go another part of my life. Then the meds and what they can do. No more sun bathing or going to the beach. My other favorite thing. Swimming, sunbathing. The beach has always been my zen. So that would be another huge part of my life I’d have to lose. So would life be worth it if my quality is down that much that I couldn’t enjoy everything I always enjoyed up until now? I know for some beaches or food or masks aren’t a big deal. But for me it’s huge. So I would be trading one thing for a while other set of issues I just don’t know if I could handle. As it is I stay in my bedroom day after day to keep out of the sun. So this whole summer has been a dud. My husband refuses to go to therapy. So there’s no help there. He tried it for his military ptsd and didn’t like it. So he won’t try it for this either. Idk maybe my life is already over and I just don’t realize it yet. To never enjoy the things I always did before I don’t know if I could deal with.
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Hi Jade, I am sorry to hear you are struggling with this illness and the weight of what it might mean going forward. I don’t say any of the following to invalidate your feelings. It’s totally fair that you feel as upset and frustrated as you do with this situation. However, I hope I can help you see that quality of life is very possible post-transplant, if you end up deciding to go through with it. There are lots of people out there writing about their positive experiences, and the tremendous things they have been able to do and enjoy with their new lungs. I would be happy to share an extensive collection of columns and articles if you’d like to read some of them.
The medications and side effects really do not affect your quality of life that much in most cases. True, unprotected sunbathing is out. But it’s not hard to implement a sun protection routine. You can still go out with good sunscreen, sunshirts, hats, etc., and enjoy a warm day at the beach or swimming pool. As for food? The only things you really lose there are pomegranates, grapefruit, starfruit, sushi, raw cheese, and rare steak. You can absolutely still eat out and enjoy cooking at home with few modifications. As for masks, I don’t know what to tell you. They’re uncomfortable, but they’re a simple way to protect our lungs when we are in public, whether they are sick lungs or transplanted ones. If you are already suffering from IPF symptoms and on prednisone and Cellcept (both are immunosuppressive medications), your doctor should have advised you to use a mask in public. Ultimately, how you measure and respond to risk is up to you.
As you process this diagnosis, however you move forward, know that this community has people in all stages, and infinite unique stories to share. We are all here to support you and help you get through it. You are not alone. Lastly, here is the link to the column that my mom mentioned above.
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I am so grateful for this forum and all of these posts. We learned yesterday that my husband’s (48, diagnosed in March 2020) IPF has gotten worse and his pulmonologist has suggested he start the process of getting on the transplant list. While I knew this would happen eventually, I honestly thought there would be more time. I had it in my head that there would be some progression that had him go from coughing to being on oxygen to then being listed for transplant. He’s not on oxygen, but the coughing is non-stop and his lung capacity has gotten worse. He’s getting a CT scan next Saturday which will be the first one since getting diagnosed. I assume this will show us exactly how damaged his lungs now are.
I’m sure he’ll follow the doctor’s recommendations. If they say a lung transplant is the way to go, he’ll do it. I just hope he qualifies as he also has short-telomere syndrome. I am so incredibly scared for him and his life expectancy but feel encouraged when I read about all of your experiences. Thank you.
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Hi, I wanted to comment on lung transplant. I was diagnosed in 2017 with IPF. I took OFEV for 5 years, I was listed this year for transplant. I am now 4 months post double lung transplant it was well worth it for me, I was on up to 8 liters oxygen before surgery. I came home with no need of supplemental oxygen. I have not had any problems so far. The meds have to be closely monitored and can be a lot to manage, but it is definitely worth it. Recovery is a slow process and I have some restrictions as to some things I can no longer do. Surgery is a huge decision and each person is different. I would do it again in a heartbeat. I still have to many things I want to see and do !
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I was offered the option the first part of this year ad my 70th b/day was mid June and I would not be eligible after that. I researched the process and in light of the enormous cost,the %s of success longevity a post transplant and post care and forever being on a seeming covid lock down it just didn’t seem desirable to me. So I declined the opportunity. Good or bad I guess I’m committed to the path I’m on.
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I am one of those that didn’t opt for lung transplant. I was diagnosed last year with CHP( Chronic Hypersensitivity Pneumonitis) after I underwent a lung biopsy. I went downhill after lung biopsy. I am an RN. I went back to work 6 months after diagnosis and lasted for 1 year. Work rejuvenated me but my oxygen need has gone up to 6-7 liters. I am always short of breath even a few feet of walking. I wanted to work as much as I can for medical insurance but my symptoms of coughing and shortness of breath were noticeable by patients. It is a disservice to my patients having a nurse worse than them. I decided to file for disability.
Prior to all of these, I was offered a lung transplant. I rejected the offer and that was my choice. I am a single and just turned 65 yo now which is shadowed by two critters. My constant companions! I was used to be independent and this illness limited my ability to take care of myself. My biggest disappointment is to be taken care by family members who have problems of their own. We are aware that they may be complications associated after a transplant. I was started in immunosuppressants and it was not a great journey. I don’t want to be a pessimist but not considering a transplant is my choice. I have poor emotional, financial and social support. At times, I want to end my life but because of my religious upbringing, it is not my decision to make but my Supreme Being – God. I saw a lot of death and dying in my profession. It traumatized me silently. Hospice is considered now not because of end of life issues but comfort and care. I still try to do stuff as much as I can but with great difficulty. People have reasons why they opt for lung transplant. I chose not to consider lung transplant. This CHP seems to be a life sentence. I am telling myself God has a reason why this was given to me.
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My name is Virginia. I am one of those that didn’t opt for lung transplant. I was diagnosed last year with CHP (Chronic Hypersensitivity Pneumonitis) after I underwent a lung biopsy. I went downhill after lung biopsy. My pulmonologist said it was a rare case. I am an RN. I went back to work 6 months after diagnosis and lasted for 1 year. Work rejuvenated me but my oxygen need has gone up to 6-7 liters. I am always short of breath even a few feet of walking. I wanted to work as much as I can for medical insurance but my symptoms of coughing and shortness of breath were noticeable by patients. It is a disservice to my patients having a nurse worse than them. I decided to file for disability.
Prior to all of these, I was offered a lung transplant. I rejected the offer and that was my choice. I am a single and just turned 65 yo now which is shadowed by two critters. My constant companions! I was used to be independent and this illness limited my ability to take care of myself. My biggest disappointment is to be taken care by family members who have problems of their own. We are aware that they may be complications associated after a transplant. I was started in immunosuppressants and it was not a great journey. I don’t want to be a pessimist but not considering a transplant is my choice. I have poor emotional, financial and social support. At times, I want to end my life but because of my religious upbringing, it is not my decision to make but my Supreme Being – God. I saw a lot of death and dying in my profession. It traumatized me silently. Hospice is considered now not because of end of life issues but comfort and care. I still try to do stuff as much as I can but with great difficulty. People have reasons why they opt for lung transplant. I chose not to consider lung transplant. This CHP seems to be a life sentence. I am telling myself God has a reason why this was given to me.
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I was diagnosed 2 years ago with Interstitial Lung disease, and autoimmune disease that causes scarring in my lungs. I’ve been on Ofev for almost two years and my doctor says I may need a lung transplant.
Are there other treatments I could try to avoid transplantation? I am 77 and think I would be rejected because of my age. I know that my Pulmonologist is a UPMC physician and they have age limits. SO what’s left for me to due except take Ofev and its awful side effects (liver, diarrhea, heartburn, and hair loss) and wait to get worse and ultimately go into respiratory arrest?
I feel ok, still coughing , short of breath with exertion, and tire more easily but maybe that’s age and not this disease.
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