Anyone have ideas about life without adrenal glands?

[RedMist]

I was feeling quite optimistic about life after removal of my remaining kidney.  Then I remembered that because the adrenal gland was almost indistinguishable on the left kidney it was removed as well.  The right kidney and adrenal gland are the same way and post-op I'll be without adrenals.   

Any thing y'all have to share will be appreciated.


__________Good Humor Bar___________
I couldn't repair your brakes, so I made your horn louder.

[galvo]

Redmist,

 I know nothing about it. But, as you don't appear to have gotten any response, I had a look around and found the following on a site called "Cushing's Help & Supprt". We have to approach cautiously anything we find per Dr Google, but it may give you a starting point to find out more. Good luck!

"Any person who has had both adrenal glands removed, and many people who have had part of their adrenal glands removed, must take corticosteroids for life.

Some 5 to 10 percent of the people who have both adrenal adrenal glands removed develop Nelson's syndrome. In this condition, the pituitary gland enlarges, producing large amounts of corticotropin and other hormones such as beta-melanocyte-stimulating hormone, which darkens the skin. If necessary, Nelson's syndrome can be treated with radiation or surgical removal of the pituitary gland."

[whiskeyfrank]

Redmist

When i had my surgery both of my adrenals were badly damaged and flat as a pancake from the pressure of my enlarged kidneys.

Mine may or may not work again its a long term thing with me so i have to sit and wait. This is what ive been told though:-

As they dont work or fail to work sufficiently i have to take a steriod to back them up. The lack of working can cause weakness, fatigue and stomach problems. The glands also work with other organs for blood pressure stability and immune systems response. I have to say i have all these anyway since my operation so i have no idea if its down to the adrenals or not!!

[cariad]

RedMist, I have not had my adrenals out, but I was on prednisone for decades. If it makes you feel better, the adrenal glands stop functioning (they become lazy) in anyone on long courses of prednisone or other corticosteroid. This is why anyone on prednisone for a long while - post-transplant, asthmatic, whatever - must, must, must taper off the prednisone slowly to give the adrenal glands a chance to wake up from their stupor. Failure to do so can lead to an Addisonian crisis, your blood pressure will crash and you can die without swift intervention. In your case, since you won't ever be tapering off the drugs, the steroids prevent an Addisonian crisis and certain death.

Having been on prednisone for decades, I can say that for me, it wasn't a terribly big deal in the end. My problem with prednisone was the concern about longterm health effects - primarily osteoporosis. Hopefully, they will find a maintenance dose for you that works, and that doesn't upend your life too much.

Good luck!

[RedMist]

Thank you all very much for your responses.  I apologize for taking a week to say so.  I saw my new nephrologist last Monday and we had a lengthy discussion.  He's quite worried (though he tried not to show it.  He's a very nice guy but wasn't expecting such a serious first appointment.)  He said that he thinks my solution is a transplant.   Among other reasons,  my bipolar disorder reacts extremely to steroids.  I get as manic as the rabbit in Alice in Wonderland.  Considering the challenges dialysis presents to managing my mental illness I'd rather die than take steroids.  Sigh..............It would certainly mean in-center dialysis because my mind would be really unreliable. 

Contrary to common myth, mania is NOT fun.   About 5 years ago my internist talked me into taking "a small dose" of prednisilone to end the several weeks of the end of a flu.  Among other misadventures, I over-reacted to a jerk behind me in line at Home Depot.  I apologized for whatever it was he thought I did but he wouldn't let go of it.   He was about 5 feet tall and I'm 6' 3" tall.  I turned around and bent 90 degrees at the waist and got nose to nose with him.  Using my quarter-deck voice I yelled "THIS IS THE WRONG DAY TO p*ck WITH ME."  Home Depot  has very odd vibes when its silent.  Anyhow I had to abandon the 20 sheets of drywall and leave before the police arrived. 

I'm trying to work out a funny line about being diagnosed with bipolar disorder at 44 and my adolescence ending at 40 but it ain't  happenin'.  I'm seeing mucho irony but little humor in the world these days.        I'll close with someone's else's joke.

A woman was looking at herself in the mirror and bemoaning the small size of her breasts.  Her husband looked up and says “Why don[t you try rubbing them several times a day with tissue paper.   In a year or so they’ll be twice a s big.”    She said she’d never heard of that and wondered if it would really  work or if it was a bad joke.   Her husband assured her it would do the trick and offered her proof.   “It worked on your ass.”  This afternoon he was moved from ICU to a regular room.



Red Mist

[galvo]

RedMist, that was a shocker!

[RedMist]

Galvo,

I hope the joke was the shocker.  As to my medical morass, it often reminds me of a Chinese curse.  "May you have an interesting life."

Red Mist