Double lung transplant

@francisanne, Welcome to Connect. I am happy that you have joined our transplant discussion group and I commend you for the courage that it must have taken for you to reach out and to share your personal struggle with us. I am a liver and kidney recipient, and in the beginning, I also questioned, even doubted that I would ever need a new liver or kidney. Boy, was I wrong! As soon as my health began to go downhill, I knew that my doctors were right, and I didn't like it.
You are correct to mention "Quality of Life" . And you also say that your doctors are saying that this is going to get worse. I encourage you to listen to the doctors. Even though you feel great today, you might not feel good in one month. I know that is ugly to say, and I do not say it to offend you. It is what happened to me on my journey to transplant.

Your active and healthy life as well as your positivity are going to work in your favor. The process in October must be evaluation. And it will be the evaluation that will identify whether you are qualified medically to be placed on the transplant waiting list. I encourage you to go ahead with the evaluation so that you will be monitored, and ready if/when your lungs fail you.

I hope to hear soon from someone with lung transplant experience. While we wait, what is your biggest fear/concern about a lung transplant or the lung transplant process?

Hello Rosemary,
Thank you so much for your response to my mail and your advice. I am planning on going to the evaluation in October and getting as much info as possible before making the decision, it's a big one. 🙂

In answer to your question I guess my biggest fear is the side effects... I have heard so many horror stories about the possible side effects and that you have to take this medication forever... I guess my other fear is that because of this I could have to spend so much time going back to hospital for different treatments to counter the effects of the medication.

I guess in a nutshell it's a fear of change... that this will become the focus of my life... You see if I go ahead with the transplant I will also have to move 6 hours away from my town and friends and dogs all the things that have kept me going so far, as the hospital here doesn't have the facilities.
I would have to live in a different city for more than a year... But my sisters and parents would come and stay... I guess it's just another thing to think about.

Once again, thank you for your support

Sending love

@francisanne, I would have replied sooner, but I was at Mayo Rochester for my annual evaluation. For me it is 750 mile drive one way. Before my transplant, my husband and lived 11 weeks at the Gift of Life transplant House while I was in and out of the hospital. It worked for us.

During our stay, we met people who had all sort of caregiver arrangements. Since we are both retired, he was able to be with me 24/7. Some patients had multiple caregivers who took turns per their schedules. Where will you be going for the transplant? Is there transplant housing an option?

As far as medications are concerned, we are each different and we need different medications and different doses. I don't know what horror stories you are hearing, but I would like to suggest a secret tip - tune out the negatives so you can focus on positivity for your mental and physical strength. And as you get into the transplant process, talk with the transplant team about what you are hearing and fearing.

As you know, there are fewer lung and heart transplants than other organs. Ghus, fewer conversations. I have located the following discussion that I want to share with you.

-What can I Expect for my Lung Transplant Review?
https://connect.mayoclinic.org/discussion/lung-transplant/
-Lung Transplant Post-op? would like to hear positive stories -
https://connect.mayoclinic.org/webinar/on-facebook-live-patient-surgeon-chat-15-years-post-lung-transplant/https://connect.mayoclinic.org/discussion/lung-transplant-post-op-would-like-to-hear-positive-stories/
Be sure to watch the video that is shared in one of the replies with Dr. Cesar Keller, a transplant physician at Mayo Clinic in Florida talking with Richard Oppelt, the first patient to receive a lung transplant at Mayo Clinic’s Florida campus and his wife and caregiver, Janice Oppelt. Here is the link in case you missed it.
https://connect.mayoclinic.org/webinar/on-facebook-live-patient-surgeon-chat-15-years-post-lung-transplant/
Rosemary

@francisann I don’t know where you are at this point but I can so relate to how you feel. I was told at the Mayo I needed a double lung transplant. I’ve been dealing with issue most of my life. I went from childhood asthma to COPD and now emphysema that showed up in 2012 and maybe before. I’ve been on oxygen for since 2017. At first it was just for sleeping or anything like swimming or exercising and now I’m oxygen 24/7. I’ve gone through many tests and it seems my time is now getting limited. I have to make that hard decision. I’m very aware how awful the medication is going to be from now on and wonder how long it will be before it causes liver, kidney problems or cancer. Skin cancer being the first in line. It is the most risky transplant surgery a person can have and the lowest survival rates. I realize this all sounds terrible but I ask a lot of questions of my transplant surgeons. It’s so important to ask questions to make a decision that’s right for you.
The Mayo is great about talking to you point by point.
I can tell you that if they are saying you need it know ask more questions. Get fully informed in every way.
It is true that you can start getting worse rather quickly. I went from not really using the oxygen to full time in 1 years time. It seemed every few days I needed it more and more. Pay attention to your body and what it’s telling you.
One week I could walk up my stairs in my house with no problem the next week it became difficult to walk down them. Recognize your lungs, heart and blood all work together. If your heart cant get enough blood because you oxygen is to low to carry blood through our body things will change a bit faster. Watch for weight lose and getting tired easily. Naps have become a necessity. When and if this starts happening (based on what you have told us) you need to really start thinking hard about what to do.
I am still trying to decide if I’m going to have the surgery or let nature take its course. It’s a very difficult decision to make but don’t ignore what your doctors are telling you. I went through 8 tests and they sat down and went through every one of them with my husband and I. It helped a lot yet I still have not been able to make the decision.
I wish you well.

@thegirls, That is a really tough decision that you and your husband are facing. I don't have experience with a lung transplant, so I have located some support discussions where you can meet other lung patients who also faced the decision about lung transplantation. Please know that you are welcome to join any discussion anytime with any questions and comments.
You are not alone. I want to invite @helenrivera, @chickytina, @nnelson823, @nnelson823, @ktgirl, @sidney073, @kathy22, @jackieiez to meet you and to share their support and experiences.

Discussions that I think will provide you with some member insights:
- Lung transplant: investigating the pros and cons of double transplant
https://connect.mayoclinic.org/discussion/lung-transplant-2b6d3f/
- Lung Transplant: What can I expect?
https://connect.mayoclinic.org/discussion/lung-transplant-2/
- Does anyone regret getting a lung transplant?
https://connect.mayoclinic.org/discussion/does-anyone-regret-getting-a-lung-transplant/
- I would like to hear from anyone who has had a lung transplant
https://connect.mayoclinic.org/discussion/lung-transplant-3/
- Lung Transplantees: Let’s connect
https://connect.mayoclinic.org/discussion/lung-transplantees/
I am very happy to share these articles that feature @chickytina and @jackiez:
- Dancing til my feet hurt with new lungs: Meet @chickytina https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/dancing-til-my-feet-hurt-with-new-lungs-meet-chickytina/
- https://mayomagazine.mayoclinic.org/2024/07/heart-lungs-transplant-recipient-mayo-clinics-care-allowed-me-to-experience-life-to-its-fullest/

@thegirls, You are absolutely correct about how thoroughly the doctors at Mayo explain everything. I was at Mayo Rochester for my liver/kidney in 2009. Which Mayo location are you at?

The decisions you must make prior to, and during the approval process are daunting, one resource that has helped my wife and I is the Mayo Jacksonville Lung Transplant Support weekly Zoom calls. There is a lot of information, and experience shared. I would be happy to answer any questions that I can and tell you my experience.
Thank you for reaching out to this forum.
Sid

As some one else noted, the decline can be swift. I contracted COVID November 2020, which damaged my lungs (I already had pulmonary fibrosis) severely. I went from heavy breathing after climbing 3 flights of stairs (switching trains) to being in the hospital on 30 liters at 100% oxygen in May 2022. Luckily I was only in the hospital for 1 week prior to getting my new lungs. It's better to have all the testing done and ask all of your questions before hand. Make sure that you write them down (I use notes app). Do all you can to keep up your health in the meantime. Ask what exercises you can do (I wasn't allowed to do much after I went into a wheel chair). Afterwards you will need to have physical therapy. Make sure that you get up as soon as possible and get your lungs working. I would ask for the pain killers and would walk with anyone that would walk with me in the hospital (once even with clergy, he was out of breath after a few laps).

I’m at the Phoenix. I had my first lung surgery in 2012 there as well. Great place to be.
I enjoy (maybe not the best word) responding to people who are feeling lost. It seems to give everyone a little break of calmness which we all need. Thank you for the links.

Thank you Sidney.

@thegirls I had a heart double lung transplant in April 2021. My heart was the main driver but also needed the lungs. So far so good for me. I have not regretted my decision 1 day. I am living life to the fullest-spending time with family and friends, enjoying my hobbies of riding and competing on my horses, walking my dogs and even traveling. I have seen big moments in my family and friends’ lives. It is a personal choice. Since having received this gift I believe I am here to give hope to others- those waiting on a transplant, those just transplanted and the family members of donors. I hope this helps-the journey is rough in the beginning but for me, the view was definitely worth the climb.