Lung Transplant Post-op? would like to hear positive stories

Posted by abmac @abmac, Feb 26, 2020

My son is six years post kidney transplant this month! He is 21 now and was 12ish when diagnosed with HDR syndrome. Vanderbilt never confirmed this initial diagnosis but he still receives care for Hypoparathyroidism and is doing well post transplant (just dang those Steroids). I am his living donor. Ironically, my husband was diagnosed with lung disease almost 3 years ago and we are now starting lung transplant evaluation at Emory University in GA. We are ... managing a lot of emotions right now. Lungs are very different from Kidneys.

Interested in more discussions like this? Go to the Transplants Support Group.

wreath | @wreath | Mar 1, 2020

In reply to @abmac "Thank you and best of luck. We should meet up in GA sometime." + (show)

That would be great. We have our initial interview Mar. 3. Everything has happened very unexpected because he was told he wouldn't be eligible because of his age. Then I discovered through the website Inspire that the age had been expanded at several centers. I am a little puzzled as to why his Dr at the Mayo failed to inform us of these changes. He is on oxygen full time and now his level has gone beyond his portable concentrator if he is very active. So a new lung would be amazing. Please keep us in your prayers as I will do for your family.

Rosemary, Volunteer Mentor | @rosemarya | Mar 2, 2020

In reply to @wreath "Thank you for the article. Believe it or not I have been chatting with Chuck on..." + (show)

@wreath, You have an amazing story. Thank you for sharing how Inspire and Mayo Connect have given you encouragement in your search for answers. Tomorrow is going to be a big day for you and your husband. I hope for the best possible outcome.
Hugs and prayers. Rosemary

wreath | @wreath | Mar 3, 2020

In reply to @rosemarya "@wreath, You have an amazing story. Thank you for sharing how Inspire and Mayo Connect have..." + (show)

Rosemary, I am sad to say that because my husband has some heart issues, a diaphragm that does not work, and is almost 76 he is not going to be eligible for a lung transplant. All this makes him very high risk. He could be worse off or he could die on the operating table. I know that there are hospitals that do high risk surgery, but we are not willing to take that chance or take a lung from someone much younger. So we are going to enjoy the rest of the time we have together. Which will soon be 56 years. We have a granddaughter getting married in August and another one graduating from pharmacy school next year and he plans to see both this events. Thank you and all the others on this website for the information and encouragement. Will certainly keep you posted.

Rosemary, Volunteer Mentor | @rosemarya | Mar 3, 2020

In reply to @wreath "Rosemary, I am sad to say that because my husband has some heart issues, a diaphragm..." + (show)

You must be exhausted after experiencing a long journey, and now a long day of medical conversation and decisions. I am sad to hear that your hopes for a transplant will not be in the future. Knowing that you have shared 56 years together and that this is a decision that you have made together is what is going to strengthen you and him as you move ahead on a new journey.
The wedding will be lovely, and the graduation will be a grand celebration. I look forward to hearing the beautiful details.

Don't wait until then to respond here on Connect.

Do you and he have any immediate plans?

wreath | @wreath | Mar 3, 2020

Yes, we had already been making plans to sell our home and move to where our son lives. He is the director of a senior living home and has the knowledge and resources that we are going to need. The Dr. suggested that we go ahead and make contact with hospice. Even though we don't need their services yet, it's better if they are already familiar with what you are going to need in an emergency. Thank goodness both my husband and I are realistic and not in denial. I want to be settled where he can enjoy the children and our four granddaughters. And when the time comes, he will be surrounded by the ones he loves and I won't be alone. Please keep us in your prayers.

salemke1952 | @salemke1952 | Mar 26, 2020

In reply to @abmac "We are scheduled for the week long tests and evaluation and team meetings starting March 9th...." + (show)

Hello Hello Hello I want to live close to Mayo so I can visit everyday with patients, I had a Bi-lateral lung transplantAugust 21 2015 it doesnt feel like it has been that long getting close to being an old timer. In 5 months I will be a 5 year survivor my diagnosis was pulmonary fibrosis and emphysema. I was 62 years old when diagnosed and 63 when transplanted, I was hospitalized for the reason my disease progressed very quickly and my oxygen requirements could no longer be met at home 30 days after being admitted a donor was found my first grand daughter was born 4 days after transplant , life is grand , I love to share my experiences ,in fact I told my story at the North Dakota Respirtory Therapist convention 235 of them and me , so please contact me to share your adventure or if you questions I will be glad to talk with you

jolinda | @jolinda | Mar 26, 2020

In reply to @salemke1952 "Hello Hello Hello I want to live close to Mayo so I can visit everyday with..." + (show)

@salemke1952
I watched an episode of NOVA which is running on PBS last night titled Transplants which covered all aspects of various organ transplants. The show covered a lung transplant patient taking his first breath after transplant and I almost cried it was so beautiful. What a unique and heroic journey you've been on, you are clearly a fighter. It is awesome that you are using your new life to share your story and inspire others.

salemke1952 | @salemke1952 | Mar 26, 2020

In reply to @jolinda "@salemke1952 I watched an episode of NOVA which is running on PBS last night titled Transplants..." + (show)

Thank you so much for that info i am going to try to stream ithat episode I will have to give it a lot of thought first just thinking about it now i get butterflies and it wa 4 1/2 years ago the thought of it scares the hell out of me ,a beautiful thing indeed. If you have ever seen the video of the donor being rolled into surgery to donate lungs i cried for 3 days its like watching yourself

jolinda | @jolinda | Mar 26, 2020

In reply to @salemke1952 "Thank you so much for that info i am going to try to stream ithat episode..." + (show)

@salemke1952 ***Spoiler Alert/Disclaimer: They do go into depth about the deceased donor aspect of transplant so please watch with caution or fast-forward if this is a difficult topic emotionally overwhelming for you. I found it very difficult to watch the donor family depicted. It is such a raw time for families and they show unimaginable strength to offer hope to others in their grief.