My Many Concerns When Considering Lung Transplantation

My husband had IPF and he passed away on January 9th - the diagnosis was 3-5 years and he had about 5 years. I hated seeing his struggle to breathe - it was so difficult on him. But, I am grateful for the doctors and VA Hospital for providing the support and equipment he needed for those years. I sorely miss him!

My father was diagnosed with IPF spring of 2015 and progressed to needing a lung transplant by summer of 2016. He received his gift of life of July 7, 2016. For our family, the financial concerns were huge. Unbeknownst to us, his insurance did not cover organ procurement for the hospital he was originally working with. We were facing a $150,000 brick wall. We had faith that God would pull us through so we started fundraising. As faith would have it, his doctors were concerned about his progression and the ability of the hospital to get him what he needed. He was transferred to Stanford, everything covered by insurance and got his lungs. What an emotional roller coaster for our family. Next came his anxiety. His anxiety about using his lungs was something he never really got over. In the beginning he struggled learning to trust his lungs. He had a good 6 months after recovery but was faced with a handful of hospitalizations over the next year and a half from pneumonia and RSV. In November he was hospitalized for the last time and we said goodbye. Even through all the struggles and pain I know he would have done it all over again to be with his wife, children and grandchildren. His story over the last two years has changed lives and his legacy will continue to do the same.

The daughter of a very good friend of mine is struggling with IPF. They have started the transplant 'journey' by establishing a team etc...but she is trying to live her life business as usual in the meantime. My friend's daughter is in her 20's. It's difficult for my friend to see her daughter struggle as much as she does, and yet, as you stated, a transplant brings with it a whole new set of challenges. I just want to support my friend and give her whatever she needs during this trying time. What does a person in this situation need most as far as support goes?

I have recently received a diagnosis of IPF, and both myself and my wife are really struggling to come to terms with the reality of it all, at the moment I am still working but sooner or later I will no longer be able to do so, our lives have already been changed in ways we never envisaged, our dream of a long life together and our plans for our future in tatters, awaiting our next specialist appointment to see what other bombshell she can deliver as on my last visit which was supposed to be to discuss my high blood pressure medications, half way through she says you have this and its incurable your best chance is a lung transplant, we, being the medical team, will discuss your findings and see you in about 2 months, no explanation no help offered and no counselling, ok if you go to the nurse now for some blood samples to be taken. Blood sample taken I asked her where do I go now? We've finished now so you can go home, didn't know what to do where to go which way is home thank God for the sat nav so shell shocked I didn't know where to turn. Really looking forward to that next appointment at the end of February.

Padezco la enfermedad. No habló inglés, sólo a medias. Deseo la traducción completa al español

Dear Charlene:

I too am suffering from an aggressive lung disease. The thought of a lung transplant is daunting to be sure. However, if the time came and my only option was a transplant, I’d say sign me up. Though I am a social person, my PF has substantially curtailed my life... and I have adapted. Right now though, I sorely miss my long walks with my dog. Those outings provided me with the time to shut off the noise of my daily life and center on other Godly wonders that nourished my soul. I miss being able to travel with my spouse that offer wonderful memories. I miss being OF and a PART of the world. If I had the lung capacity, I’d look forward to strengthening my body every day. I would want to become an aspirational supporter for others in our shoes. As for cost, you you don’t have your health, you have nothing. Your student loans are the least of your concerns. Carpe diem.

I contracted PF after struggling with Hypersensitive Pneumonatosis for 5 years. It got to the point I was on 15 L of O2. I had 6 months to live without transplant. I was 55 and not about to give up! I was transplanted on May 7,2018 with two new beautiful pink “air bags” as I affectionately call them! I definitely had survivor guilt but have come to terms with it. As far as socially I have totally embraced it and tell everyone. I tell people to encourage them to be a donor and also to face life’s struggles.
I have my own FB page and website and share my story through motivational speaking. One thing people don’t understand is that you trade one disease for another. I’m hyper vigilant about wearing a mask in public and using gallons of hand sanitizer. Not to mention all the meds. Some people say I am an inspiration which I very humbly embrace because I want to inspire people. Some people call me a hero. That’s where I correct them. I’m not a hero, my donor is the Hero with a capital H. I’m a survivor. It’s human nature to survive and without my new lungs I likely would not be typing this right now. Feel free to PM me if you have any questions. I’m here for you or anyone facing transplant surgery. God bless!!

Hi Charlene
I'm currently on the waiting list for a lung transplant in the UK. My PF has reduced my lung function to the point where I'm only able to walk 5 or 6 steps before getting breathless and I'm on oxygen 24/7. My doctors agree I have perhaps less then 6 months of lung life left, so a transplant will be a life saver.
I'm in my 40s and have a wife and 2 children and I'm not ready to go just yet! Plus, having such physical restrictions on my life is taking its toll and I just want to be able to walk around like a normal person.
I'm pretty scared of the operation and the recovery, and I know I may struggle afterwards and perhaps not even live that much longer, but at least there is some hope.
Right now, I'm also scared of my lungs failing, or catching an infection and literally suffocating as my breathing is so poor.
So really the transplant is something to grab on to, some kind of hope when things are looking a bit grim.
I've been waiting 8 months, and its possible I won't get a lung in time, but I'm ready for that call.

Dear Charlene and Forum,

To recap: Am a bilateral lung transplant at Tampa General 4/28/2015. Some comments on Charlene's excellent post.

Emotional: Survivors Guilt was not a factor until I connected with my Donor Family which took 2 years. Their sadness became my sadness especially each 4/26 came around when my Donor (Tiffany) died. They were happy to have connected with my family, unfortunately out of 6 donated organs, I was the only persistent one to connect. We both have large families, and follow on Facebook, texts, personal calls. What a blessing it has been. Last April 26th, in talking with Tiffany's mother I expressed my deep sadness. She replied there was no reason because I warmed her heart more than any grave stone could. Our meeting was covered by the Tallahassee Democrat https://www.tallahassee.com/story/news/2017/06/26/tlh-nws-lung-donor/393539001/

Physical Considerations:

I can agree with all. Adding that lungs can be transplanted through the back (angels wings) without involving the sternum. However, that depends on the individual and surgeon preference. I got the standard clamshell with the sternum plate, which by the way split cleanly in half requiring another surgery to fix it. Not fun.

Social Considerations:

Although you will likely lose "friends" due to the care and dramatic change in lifestyle needed to stay safe, I found my true friends that stuck with us during and after recovery. Get over it, losing some friends and being able to breath room air again is a good exchange.

Financial Considerations: During my evaluation we had to meet with a finance person there who determined whether or not we would be able to afford a transplant. If we did not qualify, we could not get on the list, period. It is very helpful to get resources from your transplant hospital pharmacy. They know about special programs for meds that are otherwise unaffordable.

Thanks for letting me comment

My husband had bilateral lung transplant two years ago he has two small scars under each breast each one is about 5 inches his sternum and several broken and his lungs are working fabulously after being on oxygen per 15 years with COPD it was done at Cleveland clinic no regrets

Hi Charlene:
I was diagnosed with IPF two years ago in Orillia, Ontario; now on oxygen for exertion only, and still able to travel, though getting medical insurance is a hassle. After long discussions with my wife and GP, I have decided not to pursue a lung transplant, even though the specialists at the Toronto General Lung Clinic wanted to sign me up. My reasons are complex. I turn 70 this year, and have had a full and rewarding life. A big consideration for me is that there are never enough lungs to meet the need, so I would much rather see a younger person get those lungs. We have made a deliberate decision to focus on getting as much out of life as we can, while accepting that my diagnosis means that my time will be shorter and more limited than we hoped. I would rather focus on coming to terms with my death, as a natural part of the cycle of life, than pin my hopes on the lengthy and uncertain prospect of a transplant. If I were to spend the next 2-3 years waiting and hoping for a transplant, and it doesn't come through, what then? Do I die disappointed and bitter?

An IPF diagnosis makes us all face up to our impending end of life. It has made me realize how much the medical establishment is centered around postponing that end point, no matter the costs, financial and otherwise. In itself, that is a form of denial. There are a few bright spots - the emergence of hospice care and medically-assisted death - but each of us should be taking more of a role in thinking through what is right for ourselves. For me, that is to let go as naturally as possible. I have already built my own coffin, while I still can, and we are making arrangements for a green burial. Certainly that is not the route for everyone, but it is my choice and that makes me happy.

I get much out of reading your Forum, and hope that my "contrarian" views on transplant and death may spark some thoughts for other readers.

Hi! Vicki, TY for sharing abt ur husbands surgery. May I ask his age & what he has done to aid in the success of his surgery?
TY again

My husband who is 66 had a double lung transplant on April 5, 2017. His IPF that he had for over 10 years took a rapid exacerbation and decline in 2016.
He did not want to die and together we chose for him to get the evaluation done to determine if he would be considered a good candidate. In the 2nd week of testing, he had another exacerbation and they admitted him, finishing up what was left, and listed him. Three days later, while waiting as an inpatient, he went into respiratory failure. He was put on the ventilator. And 2 days later, he received the gift.
He has never regretted it, nor do I.
Yes, we made some life changes and sacrifices to live in Phoenix. We could return to Las Vegas and just come back for appointments it we choose not to. He is doing well and we follow the "rules" to the letter. I am a nurse which has some advantages as well as disadvantages. He is alive as of now for an additional 21 months. That's 2 more Christmases, grandchildren years, memories being made, etc.
I have tried to encourage/guide, support all those that I can about the whole process as I believe that God has allowed us to be a vessel.
If you would like any more information, please email me at [email protected]

Charlene,
I was diagnosed with IPF in 2009; as a backcountry skier and road biker I thought this disease will never overtake me. In 2015 it did, by late 2016 I was on supplemental O2 24/7 and was listed for transplant in Feb 2017. I was blessed with a donor on July 13th of 2017 and received 2 new lungs. by working my butt of and being a proactive self-advocate I have returned to 90% of what I did prior to transplant.
I was fortunate not to have survivors guilt and my donors mom and I communicate on a regular basis. Early in the process she said to me " do not ever feel survivor's guilt, I was not going to be able to keep my son; through his death he saved 5 lives".
I have found almost all donor families feel the same.
Physically I feel great. Yes there are days when ribs and muscles hurt but I am alive and would not trade the pain as it reminds me of how incredibly fortunate I have been.
To address your other concerns I will agree they are overwhelming indeed. I am 66, so my outlook was and is a bit different than yours as you are so much younger. I talk to IPF patients regularly and the common thread at first is how did I get this disease which is, the majority of the time a question that has no answer. I can tell you how I personally handled it if it might help you; the first thing I did was to study and learn everything that was happening to me and what was going to happen. I was not concerned about life after transplant other than one thing....I wanted to live. I wanted to breath. I wanted to spend as many extra days with my wife, who is my hero, as I could. I wanted to ski with my kids longer and watch my grandsons and maybe granddaughter grow up. I have now lived 565 days longer than I would have without transplant!
The next and to me the most important thing I did was to tear off my rear view mirror. What I lost I grieved and let it go. I focused completely on what I was going to need to do to go forward, to march into transplant and give it 200%. I put oxygen concentrators everywhere and took in as much oxygen as I could ( you see if you try to tough it out and think I am not going to give in you cheat every other system and organ in your body of the most important thing they need....oxygen). I worked out to stay as strong as I could knowing that the better fit going in the better the outcome.
I could go on for hours, but I hoped this helps you on your journey and I wish you nothing but success.

While my husband won’t fully explain his reasoning for not wanting a transplant, for all the reasons you describe and more it’s not in his personality to want to have his life medicalized. He has not “given up”, but is content to live the life he has within the new bounds this disease puts on him. His mother passed from it an he has no illusions where it ends. He has out lived the one year expectancy docs gave him. He lives in his desired beautiful rural location, doesn’t jump each the phone ring ( is it “the call”), feels the costs of pay-as-you-go oxygen are reasonable compared to medicalized existence paid for by fellow insurance payers ($1.2 million transplant, $30,000/year anti-rejection drugs (for the same reason he rejects the $90,000 OFEV and Esbriet because someone has to pay for it and he don’t think that cost should be passed onto other insurance payers or tax payers ( for gov. assistanced insurance or the tax breaks given to the “generous” donors to that grant making drug-assistance nonprofits).

I have been so touched by the comments I was able to read. So much love. My sincerest sympathies for the losses, and my prayers for strength for those going through this horrible mess. I have fibrosis, pulmonary hypertension, and pulmonary Sarcoidosis. I am estranged from my family. They just haven't been able to comprehend my whirlwind journey of autoimmune diseases. Because of that, I just could never see myself being in line for an organ that a family is praying so hard that someone they love receives. I wish I had that... But it's my reality.

Hi Tony,
I miss the same things too! It's hard letting go of so many things that feed our soul and learn to live with a new normal. I straddle the line between grief and acceptance when I think about my situation. It definitely helps to have the support of others, especially those who understand us. I appreciate Charlene's posts, as they give guidance and comfort.

Hi,
My dad was diagnosed with IPF this year 2019 and he has been put on oxygen 24/7. The doctor tells him he is needing to get a lung transplant he has been searching for places but he and his wife are unsure of the proper insurance they are going to need to get onto the waiting list. We live in Kansas so the closest place is in Oklahoma. What should I suggest to them?

My husband was diagnosed with IPF in March of 2019 and was immediately put on 24 hour oxygen. We've visited several medical facilities and eventually found that this was caused by Rheumatoid Arthritis (autoimmune disease). Carl was approved for a double lung transplant in February 2020 and we've finally reached the point of relocating to Houston for his transplant. Se we will move in January 2021 and begin the wait. It's a very scary process both for him and for me, his caregiver. He's 60 years old and wants to walk his daughter down the aisle and see his grandkids grow up so he chose to have a transplant and we'll deal with the rest one day, one breath at a time. God Bless you all, whether you've had the transplant or are waiting like us.

Hi, I'm so pleased to come across your site. I'm 58 years old and have been off work for 3 years now with COPD stage 4. I have been attempting to get listed for lung transplant for quite awhile now. Most recently I travelled for two days to an urban centre fo a 5 week respiratory rehab and finished most of the required tests. I received a phone call today stating the team has met and think timing may not be right yet and considering closing the file. I am feeling overwhelmed with this news. I will advocate for myself during doctor appointment next week. Any questions you think I should be asking?
I'm on prednisone all the time
I am a carbon dioxide retainer so staying off o2
I put my elderly dog down to go to rehab
Eating recommended diet and gaining weight
Doing the exercises daily
What else can I do to show I feel I'm physically and mentally ready for this?