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Just introducing myself; on the plus side - all my brothers and all my children are clear of this horrible disease. My father died of this at 43 and his mother at 36. I have had both my adrenal glands removed due to pheochromocytomas. I have multiple bilateral kidney cysts, fortunately not yet cancerous. I have hemangioblastomas in both eyes which have been successfully lasered. The latest blow - a hemangioblastoma in the cervical spinal cord.
Have just started a tweet on twitter.com if anyone wishes to follow - look for @greyowl55
And hello to Joyce, who's work on VHL has been extraordinary.
I have had both my adrenals out also! (due to large pheos). I am glad your brothers and children are free of VHL. My Mom died when she was 36 due to "brain tumors" but it was 43 years ago, so we assume she had VHL. All my brothers and sister are clear of VHL, Thank God!
Hopefully your hemagioblastomas will be quiet and not cause problems. I have several and we are just watching as I have no symptoms.
Yes, I agree, Joyce's work in VHL is extraordinary!!
We are strong together,
Thanks for your message. Yes, it's a poor hand we were dealt, however there are those with worse, so I consider myself fairly fortunate in the great scheme of things. You are right - depends on whether the hgbs are going to play the game or not.
Took me 3 years to get my steroids right, but whatever I do I'm no use to man nor beast after about 4pm. Take 10mg hydrocortisone and 1mcg fludrocortisone at 8am and a further 10mg hydro early afternoon.
Good lucj and keep in touch. Richard.
My bilateraladrenalectomy was 25 years ago! They thought the replacement dose for steroids (hydrocortisone) was 40 mg per day, plus 0.05 mg - 0.10 mg fludrocortisone per day. With knowledge gained over the years, I now take 10 mg hydrocortisone am with 0.05 mg fludrocortisone am, and take 5 mg of hydrocortisone around 3 pm. I also get very tired in the afternoon and love to take naps!! This is a problem on the days I work, but I somehow get through it. I don't stay up late at night either, my Hubby thinks I am a bit silly going to bed at 9 pm, but I don't care!!
I also feel quite fortunate for the most part. I see people every day who are in much more emotional and physical pain due to disease than I am. I have my bad days, but I just get up and put one foot in front of the other. Thank God the bad days are few.
It is always nice to meet someone who shares my story!!
Best to you,
Hi, there. Thanks to Tina and Greyowl for the nice words! I am editing the next version of the Handbook today, and the electronic version (ebook!) should be ready by the end of June.
Keep working at it! I know it's not easy to balance things. We are trying to get more doctors these days to remove the tumor but leave whatever lttle bit of the adrena gland that can be left in place, to make the balance easier.
All best wishes,