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.

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cmael | @cmael | Mar 28, 2020

In reply to @colleenyoung "@cmael policies regarding patient appointments and who can accompany them are changing often. Mayo Clinic created..." + (show)

Thanks Colleen!

richardsville | @richardsville | Apr 11, 2020

My brother needs a lung transplant , dr says I can’t donate one of my lungs. Is this true

salemke1952 | @salemke1952 | Apr 11, 2020

In reply to @richardsville "My brother needs a lung transplant , dr says I can’t donate one of my lungs...." + (show)

Wow Dude sounds like you love your brother and be Illini to sacrifice to help him but only Drs know what you can do to help .Is he on the list awaiting lungs?

salemke1952 | @salemke1952 | Apr 11, 2020

In reply to @salemke1952 "Wow Dude sounds like you love your brother and be Illini to sacrifice to help him..." + (show)

In August it will be my 5 year anniversary for my very successful bi-lateral lung transplant at Mayo . This works it is a great thing and I show no sings of slowing down

richardsville | @richardsville | Apr 12, 2020

In reply to @salemke1952 "Wow Dude sounds like you love your brother and be Illini to sacrifice to help him..." + (show)

He was going to be tested April 2 but with what’s going on with this c o v i d 19 it was canceled

Colleen Young, Connect Director | @colleenyoung | Apr 16, 2020

In reply to @richardsville "My brother needs a lung transplant , dr says I can’t donate one of my lungs...." + (show)

Hi @richardsville, your doctor is right. Lung transplants are usually done with deceased donor lung or lungs. A lung or lobe of a lung can be taken from a living donor. Not many facilities do this surgery, however, because it is highly risky for both the donor and the recipient. Mayo Clinic does not perform living donor lung transplants for this reason.

You mentioned that his appointment was cancelled. Was that an appointment for evaluation?

richardsville | @richardsville | Jun 27, 2020

In reply to @salemke1952 "Wow Dude sounds like you love your brother and be Illini to sacrifice to help him..." + (show)

Yes he is

Rosemary, Volunteer Mentor | @rosemarya | Jun 27, 2020

In reply to @richardsville "Yes he is" + (show)

@richardsville, This is a big step, Congratulations to him. I hope that his transplant will come soon. The wait is stressful for him and for you, his brother. I don't have a lung transplant, I have a liver and kidney transplant, but I am here anytime. I am happy to try to answer any questions.
Do you live near him?

Rosemary, Volunteer Mentor | @rosemarya | Jun 28, 2020

In reply to @abmac "Update : because of the virus my husbands transplant evaluation at Emory had been placed on..." + (show)

@abmac, I want to check on your husband. I just finished my appointment that was rescheduled from April to June at Mayo Rochester.
Has he been able to keep his rescheduled June appointment?

abmac | @abmac | Jun 28, 2020

In reply to @rosemarya "@abmac, I want to check on your husband. I just finished my appointment that was rescheduled..." + (show)

I’ll reply in brief for now. We were seen at Emory and finished the major portion of the test on June 21. They were to meet June 22 and give us the results (being on their list or waiting). We haven’t heard anything. We would feel more comfortable with a second opinion and my husband spent several days working on the forms that were emailed to him. They require a return fax. He signed his release form. He really hopes to transplant at Jacksonville campus. Emory feels he is a tad early to transplant. They want him stronger and 15 lbs lighter. It was a sobering visit. With Covid they expect him to recover alone in the hospital and this is not okay with me! We are hoping for better news and hope at Mayo. They do not feel my husband will survive Covid directly and won’t live long enough without a transplant to wait for it to “go away” or get vaccines. So we move forward on this next step. Lots to think about each day. Thanks for reaching out. @rosemarya