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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@salemke1952

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

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Thank you for your reply 💕

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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

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'm sorry to hear about the hold on your husband's transplant. Did the tell you why? Are all of their transplants on hold or just his?

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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 am sorry, too, that he has to wait until June. I think it is best that they did this. I had my annual eval scheduled for late April, and it has been postponed until June.
Like, @jolinda, I wonder about how the transplant centers are managing their transplant procedures. My best guess it that transpants are among the highest priority essential procedures.

I would like to share this information with you and your family.
Pages >Transplant > Specific Information about COVID-19 for Transplant Patients
https://connect.mayoclinic.org/page/transplant/newsfeed-post/specific-information-about-covid-19-for-transplant-patients/

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@salemke1952

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

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@salemke1952, Welcome to Connect. That was an honor to tell your story at the convention. I am sure that everyone was enlightened by what you had to say and inspired to share it with their associates and patients when they arrived home.

Did you get your transplant at Mayo? Which location?

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@rosemarya

@abmac
I am sorry, too, that he has to wait until June. I think it is best that they did this. I had my annual eval scheduled for late April, and it has been postponed until June.
Like, @jolinda, I wonder about how the transplant centers are managing their transplant procedures. My best guess it that transpants are among the highest priority essential procedures.

I would like to share this information with you and your family.
Pages >Transplant > Specific Information about COVID-19 for Transplant Patients
https://connect.mayoclinic.org/page/transplant/newsfeed-post/specific-information-about-covid-19-for-transplant-patients/

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I too normally have my annual checkup in April, but have not heard anything yet for this year. I have called twice to the transplant department and still have not heard back. I had requested a June appointment months ago for other reasons.

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@jerrynord

I too normally have my annual checkup in April, but have not heard anything yet for this year. I have called twice to the transplant department and still have not heard back. I had requested a June appointment months ago for other reasons.

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@jerrynord, Are you on the patient portal? Why don't you send a Non-Urgent Message to your transplant coordinator. When I sent a message early this week there was a note that it could be a 2 -4 day.
Be safe.

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@rosemarya

@jerrynord, Are you on the patient portal? Why don't you send a Non-Urgent Message to your transplant coordinator. When I sent a message early this week there was a note that it could be a 2 -4 day.
Be safe.

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I will try. Thanks.

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@jerrynord

I too normally have my annual checkup in April, but have not heard anything yet for this year. I have called twice to the transplant department and still have not heard back. I had requested a June appointment months ago for other reasons.

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I had an appointment for April 12-13 for my annual checkup. Mayo called and we changed it to May 12-14. I was able to get the money for my prepaid hotel room back. Now, I’m hesitant to rebook, since the May appointment may be also be postponed. My daughter ( the donor) always comes with as well as my husband, who has moderate dementia. I will need someone with for the biopsy. There is no where for my husband to go and he shouldn’t be alone. I hope they’ll make an exception for him to be with.

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@cmael

I had an appointment for April 12-13 for my annual checkup. Mayo called and we changed it to May 12-14. I was able to get the money for my prepaid hotel room back. Now, I’m hesitant to rebook, since the May appointment may be also be postponed. My daughter ( the donor) always comes with as well as my husband, who has moderate dementia. I will need someone with for the biopsy. There is no where for my husband to go and he shouldn’t be alone. I hope they’ll make an exception for him to be with.

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@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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