Thursday, November 6, 2008

Susanna, pituitary bio


I am in the recovery process of my Cushings, but it is going oh so slowly and it is a hard route. I am not sure what to expect and am writing to try
and get some feedback.

I was just diagnosed in April 2008 while in the hospital due to almost having a heart attack due to my high blood pressure. The doctors thought I had a hole in my heart, but fortunately this turned out to be false. The doctor that was assigned to me in the hospital saw my purple stretchmarks and said under his breath that I might have Cushings. He also had heard my whole list of symptons that I had and put it all together finally!

I had heard the term Cushings before since I am a dog trainer and one of my client's dogs had it! I was just glad to have a possible diagnosis since for 4 years I had been having symptons and going to specialist after specialist. I had gained a ton of weight in my face and belly, had high
blood pressure, had blood bruises on my forearms, really weak, acne, trouble walking, purple stretch marks (which I think is called stria?), staph infection, insomnia, and on and on. Things just got worse and I eventually became disabled and still am.

My husband, who has been so supportive and great through it all, has had to run our own dog training business and take care of me for a long while now. The diagnosis was such good news, but things really haven't gotten much better.

I had the surgery on July 8, 2008 at Univ. of VA by Dr. Oldfield, who is supposed to be one of the best Cushings surgeons. I was lucky to be referred to him and have the insurance to cover it.

Dr. Oldfield removed a small tumor from my pituitary and feels he got all of it.

After the surgery, I felt terrible as you know happens and am still trying to recover. It has been almost 4 months since the surgery and am not doing very well. I am still disabled. I can barely walk or get out of bed. Every joint in my body aches. I have had nausea which has
finally gotten better due to being on protonix Is the nausea caused by the hydrocortisone? Even after 4 months of surgery I am still on 25 mg of hydrocortisone in the am. and 10 mg in pm My system is very sensitive to my decreasing the hydrocortisone, even by 2.5 mg.

My pituitary has not started back up either. My endocrinologist here in WV says I might have arthritis now. Not sure about that since the other endocrinologist, Dr. Vance, at Univ of VA said I would have aches and pains after the surgery.

It hurts just sitting here at the computer! I am exhausted and so fed up with it all! I have had a great attitude about it and have not gotten depressed through it all even though I am bipolar. My faith has helped a lot too.

Getting the diagnosis finally was amazing. I thought the surgery would be even better. I am not losing much weight, have diabetes now and am testing my sugar every few hours, high cholesterol, diabetes insipudus from the surgery, my high blood pressure is getting better thankfully (I think that was one of the scariest symptons since the meds couldn't even control it), but still on meds, am taking protonix for nausea, have arthritis or severe joint aches, really weak and tired, it is hard to walk, sleep a lot, but try and get up and stay as active as possible.
When I am overly active I end up paying for it over the next few days, by feeling more weak, tired and just lousy and end up in bed.

I don't mean to be negative and don't want to discourage anyone that is waiting on the surgery, but I am just t rying to see what the recovery processs is and whether I am feeling the way I am feeling and it is ok and true to recovery. I have been told that it will take at least a year to
recover and understand this, but don't know what to expect. each month I would have thought by now that I would be feeling a little better.

I just got out of the hospital in mid October due to dehydration and diabetes. I was in for a week. I have almost died twice due to this illness and am not sure if that is common... I haven't done much research and am not sure why. I think I just didn't want to know. It is also hard to concentrate and get the energy to do it.

Thanks for listening. I feel for all of you with Cushings. It is a long process and a really hard one at that. I am just now starting to drive a little bit.

I had 4 fender benders in a couple of months before being diagnosed and had to stop driving. It was due to the Cushings and me not being able to focus and I got confused easily. My memory has also been affected horribly and that has been really difficult.


Email Susanna

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