My Stepson, Corry who is 20 had both adrenal glands removed two years ago. He was doing pretty well we thought, but now he has an upset stomach most of the time, and has a hard time sleeping. He has a hard time getting motivated to get a job, so he just holds down odd jobs. He lives with his girlfriend and they have a little one who is almost 4. He is just not the same Corry that we knew. He was always busy doing something and usually worked very hard to earn some extra cash. He also had a full time job for several months after the surgery, but quit to take another job, but ended up not going the first day!
I don't know what medications he is taking, but know that he is really frustrated. Is this common?
Thanks for any info! Gwen
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Two years after the surgery
- By goose
- Posted March 24, 2008 at 8:59 pm · 9 replies
- In Health management issues
- Shared with the public
Explore topics in this discussion:
9 replies
- Oldest first
- Newest first
- By sfit
- Posted March 25, 2008 at 9:23 am
- Report post
Hi Gwen,
I have been living without my adrenals for 19yrs since I was 15. The hormones replacement therapy your stepson is taking seem to take several years for the body to adjust to. Nausea, mood swings, and anger are all common side affects. The best advice I have is to use the VHL network to find a good endocrine doc in your area who understands VHL. This transition is very hard on ones psyche and Cory needs to know that he can live with this disease and to be proactive about his health. I still have days where this disease frustrates me but it is manageable . I hope this helps. If you or cory ever want to chat I would be happy to help.
- By goose
- Posted March 25, 2008 at 9:43 am
- Report post
Thank you so much for your response! did you find as you age that you need to change the dosages of the meds? The Dr. has him increase for awhile which helps and then decrease which eventually he ends up in the same condition.
Have a great day, Gwen
- By sfit
- Posted March 25, 2008 at 11:56 am
- Report post
Meds are tricky because the normal function of the adrenal along with the brain is to release hormones as needed by the body. This means it is very person specific. So when we are transitioned on to hormone replacement because of the lack of adrenal glands the body has to figure out the cycle all over again. The simple answer is Cory is the only one who knows how he feels at different times of the day so keeping a journal of different side affects and dosages will help he and a good endocrine doc fine tune dosage.
- By goose
- Posted March 25, 2008 at 4:50 pm
- Report post
Thanks again, I'll pass the info on to Corry and try to encourage him to take a look at this site!
Gwen
- By sfit
- Posted March 27, 2008 at 11:27 am
- Report post
Gwen,
One more thing for proactive management of VHL. Cory needs to get an MRI of brain, spinal cord, and kidneys, and have eyes checked for tumors.
- By goose
- Posted March 28, 2008 at 7:24 am
- Report post
Thanks, so far he has been doing good with his follow up checks. Gwen
- By motorgirl85
- Posted September 2, 2009 at 8:40 am
- Report post
Hello there... just read both of your responses.
I have Carney Complex, used to have Cushings and was diagnosed with Acromegaly.
Not a very good combination...
I've been suffering from the same experiecnes your son Corry has. Had both of my adrenals out in 2004 (with 19) and have never been the same person since.
May I ask were your son had his surgery and if the doctors prepared him for what the consequenses would be living without your adrenals?
I've had to learn the hard way... and am still learning!
I totally agree with goose... you have to be proactive and positiv about it!
You say your son suffers from an upset stomach and is having a hard time sleeping. I think he must be going through the same things I did and still do.
He's probably pushing himself over his limits during the day. The first thing he and his surroundings have to accept is that he doesn't have the same energy levels like before the surgery. That's a really hard thing to get your head around.
By pushing himself I don't just mean physically I also mean mentally. You still see the person from before the surgery and Corry wants to be that person.
Corry probably allready suspects that he won't be able to return to his "normal" self. I'm guessing that that's the reason why he's having trouble sleeping.
I always feel like my head has to compensate for my physical lack of selfcontrol. Meaning my body doesn't possess the flexability of adapting to any type of situation as it used to. Resulting in stress. Anytime the body can't adaped quick enough it's stress. And it takes tremendous energy to get through that stress.
If any of this sounds familiar to your son please have him contact me.
If you have any questions please ask them.
- By motorgirl85
- Posted September 2, 2009 at 8:52 am
- Report post
@ sfit:
I would love to ask you some questions about how you cope with your everyday life.
- By goose
- Posted September 2, 2009 at 10:01 am
- Report post
Hi,
Corry had his surgery done at the University of Iowa Hospitals and Clinics. Since I am the Stepmom, I did not get involved with the Pre-surgery visits and follow-up appt. Corry's Mom and Dad worked with the Dr. I like to think of myself as the Support Staff! It was 2 years in May that he had his surgery and I think he has settled into a routine with his meds and day to day activity. He still keeps his follow-up appts and all the reports have been good.
He has been doing mostly handy-man jobs but has now started showing interest in finding a full-time job. I know that when he gets excited, for example a first day on the job, he has trouble sleeping which kind of messes him up by throwing off his sleep, eating and digestive patterns. (Especially that first year!)
But, I think that he has settled into a routine and is doing really well. His dad says that he is not the same Corry from before, but he is still a very wonderful young man and we are proud of him!
Corry is not big into talking about it most of the time, maybe with those that are the closest to him. I would encourage you to continue to share your feelings and frustrations with people that are close to you and allow them to share their concerns. I know that Corry's dad is mostly scared for Corry and always concerned like most parents are for their child.
Take care, Goose
Add to the discussion