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.

@colleenyoung

@cmael policies regarding patient appointments and who can accompany them are changing often. Mayo Clinic created this website that is updated regularly so that you can prepare.

Mayo Clinic Patient & Visitor Restrictions https://www.mayoclinic.org/covid-19

The concierge desk can also help make room booking arrangements and offer advice on when to book etc. You can contact them by email, phone, chat or in person during business hours:

* Phone: 507-538-8438
* Live Chat: https://www.mayoclinic.org/patient-visitor-guide
* Email: concierge@mayo.edu

If in May, restrictions limit you to only 1 caregiver to accompany you, you may wish to call ahead to ask about an exception or work with concierge services to find an alternate solution.

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Thanks Colleen!

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

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@richardsville

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

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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?

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@salemke1952

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?

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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

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@salemke1952

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?

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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

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@richardsville

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

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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?

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@salemke1952

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?

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Yes he is

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

@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?

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@abmac

Update : because of the virus my husbands transplant evaluation at Emory had been placed on hold. His final appointments and test have been postponed until June 🤞🏼

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@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?

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@rosemarya

@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?

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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

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