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anyone have organ transplant?

nameisbond

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Thanks............................. I've been taking her to the tests appointments. Cat and PET scans, x-rays, colonoscopy and blood work several times. More tests next week. They test everything. Its about two months worth of tests just to get on the list.
 

HNL2LHC

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Best of luck to your mother and family at this time. As much as the hospitals are getting to be questionable in their ethics today’s medical technology is remarkable.

While the wife was getting treatment at UCSF, 2 years ago, we stayed in a group home type of housing. Own rooms but shared the common kitchen and living space. We were there for about 8 weeks In total. People would come and go and we met a lot of great people with different medical conditions. The two that stick out to me at the lung transplant people. One gentlemen had Pulmonary Fibrosis, that is what my father died of Last year. Turns out th gentlemen had a lung transplant and was doing exceptionally well. He said that it was like he was 20 years younger. I was shocked to here that there was a treatment for my father and I called him on the phone immediately to tell him that there was hope to extend his life. He said that he knew but had no interest in going through the process.

Again wishing the best to your mom in the process. Keep us posted as to the process.
 

sintax

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I had a friend who went through the kidney transplant process. Its a crazy ordeal with tons of ups and downs. Wish her and your family the best!
 

HBCraig

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My mom is getting on the list for a lung transplant. Holly shit, a lot of medical tests before she is put on the list. Just curious if anyone here has had a transplant?
Friend of mine had a kidney transplant

He takes anti rejection meds. A lot of them

Best of luck to your Mom
 

fmo24

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My mom and brother both had kidney transplant. My mom was 70 something when she had hers and lived another 10 yrs or so. My brother is still doing well. And yes lots of medicine for ever. Plus pre planning of dental work as your immune system is suppressed so as not to reject the new organ. I think my brother takes antibiotics two weeks ahead of any dental procedure
 

nameisbond

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My mom and brother both had kidney transplant. My mom was 70 something when she had hers and lived another 10 yrs or so. My brother is still doing well. And yes lots of medicine for ever. Plus pre planning of dental work as your immune system is suppressed so as not to reject the new organ. I think my brother takes antibiotics two weeks ahead of any dental procedure

Good info, thanks............................. Here after 70, you are no longer eligible for a transplant. My mom is 69. Moms best friends husband needs a heart, but he's too old for a transplant.

The amount of tests required are staggering.
 

TPC

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FYI:
Wife works with transplant patients that received diseased organs.
Better than nothing.

Patient then goes through treatment for what ever the organs disease is.
MFSOB tough, complicated journey but it works if theirs no alternative.

Yeah, they do that and they pull it off. But it ain’t easy.
 
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RandyH

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My wife is 10 years post heart/lungs. You trade one set of problems for another. But we would do it again for sure. The meds can take a toll and you have to follow the scripts. Good luck .👍
 

nameisbond

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Thanks all......................... Its a long haul. But needs to be done. Her lungs are functioning at about 28% according to tests. Not good. Without a transplant, she doesn't have much longer. The screening process is extensive, but worth the effort.
 

Bowtiepower00

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I wish your mom the best.

You both need to have an honest discussion before she agrees to this.

Renal transplants are relatively common.

Lung transplants are not.

When they go bad, they go REALLY bad.

Find out, in writing, what your/her options are regarding Code status and end of life AFTER the transplant.

All of my experiences are with transplants that failed. And in the fine print, the patient must agree to stay alive for at least one year. This is for the transplant team to keep their survival numbers at an acceptable rate.

I have seen multiple patients who should be sent to hospice tortured for a year so the program can make their numbers.

As a healthcare professional, a lung transplant is on the short list of things I would never agree to.

I’m not trying to be Debbie downer. But vet your transplant team accordingly, the hospital I was connected with was one of the top in the world.

It is up to your mother- and you- if the process is worth it. You definitely need to discuss with her what her expectations are. She is 69. At top I would expect 10 more years. Not sure what her current health is.

She might do great- and I hope she does- but make sure you both are ready for what this journey entails and what the potential downfalls might be- and know exactly what she is signing up for.
 

nameisbond

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I wish your mom the best.

You both need to have an honest discussion before she agrees to this.

Renal transplants are relatively common.

Lung transplants are not.

When they go bad, they go REALLY bad.

Find out, in writing, what your/her options are regarding Code status and end of life AFTER the transplant.

All of my experiences are with transplants that failed. And in the fine print, the patient must agree to stay alive for at least one year. This is for the transplant team to keep their survival numbers at an acceptable rate.

I have seen multiple patients who should be sent to hospice tortured for a year so the program can make their numbers.

As a healthcare professional, a lung transplant is on the short list of things I would never agree to.

I’m not trying to be Debbie downer. But vet your transplant team accordingly, the hospital I was connected with was one of the top in the world.

It is up to your mother- and you- if the process is worth it. You definitely need to discuss with her what her expectations are. She is 69. At top I would expect 10 more years. Not sure what her current health is.

She might do great- and I hope she does- but make sure you both are ready for what this journey entails and what the potential downfalls might be- and know exactly what she is signing up for.
Good reply................ We only have one hospital that does transplants here for BC. Its Canada and a little different being socialized medicine. I'll be in on the meetings with the transplant team. So far they are doing tests to ensure she is a good candidate.
 

Bowtiepower00

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The money- so to speak- is in the testing. I’m not trying to deter you or your mother from seeking treatment- I just want you to have realistic expectations going in.

Perhaps there is a site where you can find transplant recipients and their experiences? And maybe ask some questions?

I have some colleagues with more lung transplant experience. I will reach out to them, i will let you know if they have any further insight.

You should be able to research your hospital and get an idea of outcomes and patient experiences.
 

RandyH

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My wife suggests a Facebook group called Lung Transplantation, Taking Flight with znew Life Support Group.

She has learned alot from this group of people.
 

nowski

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We have 3 friends that have had kidney transplants 2 good and one rejection. Another friend of ours (Jim) luckiest of the group had a heart transplant at 69 and 11 months, he was within a couple of weeks (70 years old is the cut off for heart transplants) of being removed from the list. It's been 2 1/2 years since his surgery and on a sad but happy note he's doing well with that heart of a 30 year old...

Thoughts and prayers for your Mum...
 

nameisbond

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Thanks............................. She has a meeting with her doctors on Weds. I'm going to that. Have to do some internet searches to be prepared for the meeting. The hospital does have a support group that meets weekly. Those on the list and those who have had transplants. I'll be taking her to those meetings and sit in on them.
 
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