Is it really a "gift of life"?

Well. I got a kidney and liver transplant 4 years ago and haven’t really left my bed since.I feel terrible all the time. I get dizzy and winded just getting up and walking to the kitchen. I’ve talked to my doctors about this and they say that it is a side effect of the anti rejection meds and there’s nothing to do to help some people have poor reactions to the medication.
I’ve always struggled with depression and have tried many different antidepressants but none really worked. It has gotten worse since I’ve been cut off from the outside world.
I’ve decided to stop taking my anti-rejection medications… It will be long and painful, but at least I won’t have to physically “pull the trigger” or “take a leap”

I’m going to get a lot of hate because there’s tons of people (probably close to you) waiting for life saving organ transplantation. I get it. But understand, I value the gift that was given. I just was a bad candidate. If my organs could have gone to anyone else, I’d be the first to vote for that decision.

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Hey man that suck what you are going through, Health prolbems always suck. The body is very complicate things and some shit just goes wrong. Sadly we dont have control over the future.

I have aslo got off my meds and that in itself a battle and sucks I feel meds make everything worst. Now this intense feeling of trying not loose control and flip out. Also felt like that cause more problems than answers. I wish did CBD oil in the first, cuase at least it was more natural and safer. Im sorry for what you are going throught.

Do you get dizzier and dizzier the longer you stand up?

Yes. The longer I’m on my feet the closer I come to passing out. I can only stand for short periods of time.

I have the same problem. I am bedridden because of it. Best guess for what’s causing it is adrenaline sensitivity and/or too much adrenaline. When you got a new kidney, you also got a new adrenal gland. If you got a new adrenal gland you might get better. If you remove this adrenal gland’s medulla (thing in the center), you might get better (experimental). You might get worse. If there is some way to get rid of the adrenaline using chemicals (pills), like the MAO in MAOI, those would probably help. The hard part is convincing the doctors that it’s real and is happening to you and you might be able to do that because you have had an organ transplant, organs can be weird, and you have had this since the transplant. You might be able to get another adrenal gland.

Until then, stand up for as long as you can without making yourself sick the next day. This should increase your “tolerance” for standing up, which means that you will be able to stand up longer. Lie down 5-10 minutes every hour rather than taking naps, so you lose less of the day (if possible). See a neurologist. Get a tilt-table test. Make a case for another transplant. There are medications that can increase how long you can stand up.

I recommend taking your anti-rejection medications because kidney/liver failure is widely regarded as one of the worst ways to commit suicide. It’s long. It’s painful. You have enough time to regret it after you hit the point of no return.

I also recommend taking your anti-rejection medications so that the doctors take you seriously and so you will have a chance of getting that new adrenal gland.

Thank you for your reply. How do you cope with being bedridden? I’m nearly 40 and feel too young to spend the rest of my life in bed. It has been a shock going from working 50+ hours a week to being unable to move from bed.

I’m pretty miserable and console myself with the fact that my family pretty much said their goodbyes 4 years ago. It won’t be too much of a shock to them when I finally pass.

I’ve spent days thinking of ways to pass on into the next world and find most methods too messy. And its hard to make an active choice to end it. I don’t think I have the guts to pull the trigger or wield the knife.
Stopping my meds seems like a passive way to end it. I’m sure you’re right, going thru liver and kidney failure again sounds like a painful nightmare, and I’m somewhat scared, but determined.

I just want it to end.

You’ll get better. The important thing is your alive and well.

Alive, but not well. I used to wonder what was wrong with me, and @Transplant hasn’t had this for very long and remembers what being free is like. Knowing that you are not well and that the doctors are wrong is one of the biggest steps towards the healing of the heart and mind. I don’t know how to use English to explain the profound despair that having your body turn on you and your doctors saying that nothing is wrong and your friends telling you that you are well or that it’s all in your head or any variant thereof.

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You said it perfectly @George_Mallory.

Successful-ish coping? Low expectations and self improvement. Trying to learn something new every day. Create something, if only in my mind. Keeping my surroundings lit during the day and having the switch within arms reach. I have a big iPad Pro held by a gooseneck directly over my head that lets me watch movies and read books and sort of finger-peck-type while lying down.

Sometimes my best is not good enough and I admit myself to inpatient psychiatric hospitals because being a voluntary admit sometimes gets me perks that I wouldn’t have if I swallowed a bottle of pills, got my stomach pumped, and then wind up in a suicide ward anyway.