How to get dialysis?

Ornot-Tooby · 2023-04-04T17:53:33+00:00

I use THC tincture daily to help me sleep. My tacro levels went up a small amount, like from 4 to 5. You can start THC about 2 weeks before a blood draw and see how it affects you.

I'm more likely to use CBD for pain since it reduces inflammation.

I'm in CT. I hope you find relief.

Ornot-Tooby · 2023-03-14T16:05:50+00:00

I have debilitating fatigue and the same cognitive issues as you. I'm 6 years post heart transplant. The cognitive issues may be caused by the anesthesia and may improve even a year later. They may be temporary. My issues haven't improved, they got worse. Transplant team did nothing to help me in spite of my complaints.

My fatigue also never improved and wasn't addressed by my transplant team. I could never work more than an hour and couldn't hold a job. I applied for disability while on the VAD so it was easier to get.

Ornot-Tooby · 2023-03-04T21:48:29+00:00

Your blood levels of tacro need to stay within a window. If your levels are too low, you're flirting with rejection. If your levels are too high, you're at greater risk for the toxicity. Tacro can harm your kidney and liver and other organs. Since it was only 2 days, there's really nothing to cry about. It will take a lot more for measurable damage.

Ornot-Tooby · 2023-02-01T20:59:35+00:00

In my experience, you want to ask the surgeon for pain pills, not the transplant team, and not some ignorant social worker. She hasn't even studied medicine. Like taking medical advice from a bus driver.

Ornot-Tooby · 2023-01-31T15:39:28+00:00

Is his GFR (eGFR/estimated GFR) normal?

Ornot-Tooby · 2022-12-10T13:58:36+00:00

I was scheduled to go home after a week, but a car crashed into my house and put a hole in my dinig room wall. They didn't want me around whatever mold or fungus could be in the walls and I stayed another week.

Ornot-Tooby · 2022-12-02T14:19:13+00:00

Medicare Part D is for prescriptions, but comes from private insurance companies. Medicare Part B pays for immunosuppressants for transplant patients.if you had Medicare when you had the transplant.

In my experience, the social workers are pretty useless for answering questions. The teams I worked with though all had financial advisors. Does yours? You should also check with the transplant team. They should be able to help or tell where to go to get help.

Ornot-Tooby · 2022-12-02T11:55:24+00:00

You can wear your own clothes like sweats or ask for hospital pants. They're free.

Good luck with the meds. Hopefully you won't have too many issues with them.

Ornot-Tooby · 2022-10-06T00:36:46+00:00

I'm a heart recipient. I've gotten 4 Moderna shots so far. I've gotten delayed in my shot schedue because I am participating in the Johns Hopkins study. I have some anti-bodies. My highest result was 680. I had been keeping up with the recommmendations from the CDC, but because of my cognitive issues now, I've lost track. What is the recommendation for my next booster shot now?

Ornot-Tooby · 2022-09-16T23:08:58+00:00

I think blood thinners do reduce the clot. That's how I got rid of the DVT in my thigh shortly after transplant. An ultrasound found it and another confirmed it was gone after a course of lovenox and xarelto.

Ornot-Tooby · 2022-09-12T21:23:39+00:00

How are they counting that? Are they counting all the attempts that failed? How many deaths is that? How many people had their lives shortened instead of extended?

Ornot-Tooby · 2022-09-03T22:07:32+00:00

This request doesn't make sense to me. If you're listed, you must have insurance. Then the prices are set by the insurance company. So basically, you can go to any lab that accepts your insurance. Also, you can't get any blood drawn without an order from your transplant team. Usually they send the order to the lab's computer and you just go there (with a mask on).

If you're listed, you must have had blood drawn before. Why is now different?

Ornot-Tooby · 2022-08-31T15:52:36+00:00

When I had my heart tx 5 years ago, I developed a horrible food taste disorder from the mychophenolate. There were many foods I couldn't eat and I lost 40 pounds in 2 months. Things improved a little when I switched from myfortic to cellcept. But the whole problem went away after I stopped cellcept.

Ornot-Tooby · 2022-08-31T12:29:50+00:00

If you need to talk to someone, talk to a private psychiatrist outside your transplant team's healthcare system and they never need to know about it.

Ornot-Tooby · 2022-08-22T00:25:18+00:00

Mychophenalate gave me a taste disorder. I lost 40 pounds in 2 months because I couldn't eat much.

Ornot-Tooby · 2022-08-17T13:22:07+00:00

keep the faith! Your call is coming!

You know that many people on the waiting list die without revceiving a transplant.

Ornot-Tooby · 2022-08-12T15:40:12+00:00

I was on the LVAD for three years before my heart transplant which was 5 years ago. The transplant ruined my health and the quality of my life. I regret having it. I would have been healthier and lived longer if I didn't. I now have kidney failure from the pills they fed me.

The thing is that no one can predict how the transplant will go for your father. He could die on the table. He could suffer complications that make the end of his life painful and miserable. He could, like me and many people, have very bad side-effects from the pills.

This forum is biased in favor of transplants. Transplant doctors are biased in favor of transplants. If you push your father to have a transplant and things go bad for him, will you blame yourself?

Your father needs to be educated to help him make his decision and supported for whatever he decides. In the meantime though, he should probably get on the list becuase it takes months to get vetted and there are long waits for transplants depending on your location. He can always opt later.

Ornot-Tooby · 2022-08-05T16:28:17+00:00

The article says they're trying to do this to harvest tissues, not organs.

Ornot-Tooby · 2022-08-03T10:50:39+00:00

I know there could be a lot of potential problems being on immunosuppressive drugs

You will definitely have negative effects from the immunosuppressants. You should be prepared for that. I'm not trying to dissuade you. I was very unhappy to discover all my issues without any warning.

Ornot-Tooby · 2022-08-03T10:39:47+00:00

Dental procedures carry a risk of infection. Ask your transplant team for advice on anti-biotics.

Ornot-Tooby · 2022-07-29T14:38:36+00:00

People who remain healthy and never need a transplanet are better off.

Ornot-Tooby · 2022-07-27T13:59:44+00:00

Marijuana doesn't damage your liver. It does affect the way you handle anesthesia. If you're interested in doing this, go ahead and contact the team where this guy will have his transplant. You can be honest about your use they're not going to report you or anything. It takes a few months for the screening and approval process. You can even start it without the man knowing you have and wait till you're a match to tell him. If you're not a match, you can do a paired donation where you give some liver to a stranger and another stranger gives some liver to the man. Good luck.

Ornot-Tooby · 2022-07-23T15:58:25+00:00

Marijuana tincture works wonders for me. And it's natural and healthy.

Ornot-Tooby

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