Double lung transplant

Posted by francisanne @francisanne, May 5 12:02pm

I have stage 3 emphysema. I m 40 years old and have been told I need to have a double lung transplant. I have been approved anf if I decide to do it the process will start in October. I am having a difficult time making the decision to have it or not, you see i don't really have any symptoms apart from slight breathlessness sometimes (the doctors are a
bit bewildered as to how I hve less than 31% lung función but i am still riding my bike etc and living a very 'normal' life. I have heard the phrase 'your symptoms don't match the severity of your condition' countless times by the doctors here in Spain.
I have read all the side effects and survival rates abd it seems very bad, with info about kidney failure and all sorts because of the medication and that's if you survive the operation. I was hoping to connect with someone who could maybe reduce the anxiety a bit by telling me a positive story about their experience. As, at the moment, it seems like a terrible option for me compared to the quality of life I have at the moment (although again the doctors keep telling me this is going to get worse burn I try and stay positive in mind and spirit as in the last 5 years there has been no progression in my lungs nor have any of my organs suffered eventhough I was not given treatment of any kind until March last year and only started with the oxygen machine last July, which I still only use when doing exercise or long walks)

Thanks so much for any help you can give me

Sending out love and kindness to all.

@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?

REPLY
@rosemarya

@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?

Jump to this post

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

REPLY

@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

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