Ceep's surgery Anniversary (really LONG)

[Guest guest]

Dear Brave Souls:

My fourth anniversary of GB surgery is day after tomorrow on Our Lady's Feast

Day 2.2.2000. This group and the many people on it have been angels in so

many ways to me, a stranger, and TO so many others. I just think you are a group

of courageous extraordinary people. Truly blest by your presence and

knowledge, lurkers whose spirits reach through regardless, and those who post,

who are

truly generous with us all.

As you know I am looking into a revision from my extremely proximal rny, to

probably a distal rny-- maybe a 60 -100 cc common channel as opposed to about

250 cc common channel I have now. The ds revision is a far bet bec I am afraid

of adding more cutting and thereby more risk.

I had gastric bypass to save my life from a virulent form of diabetes that

would not abate and the meds for it put me in the ER time after time, instead of

in better health. I had the surgery in a desperate attempt to stop dead in

its tracks a future I would see horribly with me for sure, going blind and

having legs amputated and being in a wheel chair for life as several others in

my

family had lived that kind of utterly miserable lives. When they died,

everyone said, Oh, they are in a better place, and were RELIEVED that they had

passed.

The relief that very ill people had passed seems natural and understandable

of course. But I also know that relief came because it took so very much to

take care of them; it took many family people just to take them on a simple trip

to the doc. I did not want people to take care of me, even out of love, AND

with increasing tiredness, and being to them what is called a freeking

" burden. " When I die, I hope people say She is in a better place " and that they

are

happy for my life and sad for that I am no longer alive on earth. I don't want

anyone to be 'relieved'. So that was my thinking back then. Had beginning of

macular degeneration and numbness already in feet and legs. And sky high blood

sugars and bouts of diabetic shock

Gastric Bypass Surgery was a disaster for me; developed a slow moving staph

infection from a leak that was not diagnosed bec hospital x-ray equip was

malfunctioning at bariatric hosp. Sick as a dog for 9 months. Many misdiagnoses

by

ER docs and PCPs, including massive heart attack (angiogram done for that

where they thread wire up your thigh into your heart while you are awake),

spinal meningitis, (spinal tap for that, one of the most painful things I have

ever experienced awake in my life). Finally via CT scan they saw giant abscess

that had grown into my spleen from the leak. They tried to drain it, (dont ask,

they do it while you are awake) and collapsed my lung in the process.

Spleen could not be saved. Was in hosp for a month after massive surgery.

Many blood transfusions and all the scary crap that goes with it. Because lung

collapsed, it filled with fluid. They extracted it several times and tested it

for infection each time. At pcp's the next month after out of hospital, the

whole team of docs come in looking glum as hell and tell me my lung test

indicates I have a virulent form of lung cancer, mesothelioma, and that I have

four

months to live for it is very advanced. I have never come closer to dying of a

heart attack on the spot. My whole family was thrown into the worst sorrow

imaginable. I began to walk like a dead woman, praying until sweat would break

out

on my forehead and under my arms and run down my sides. I just asked that all

my loved ones would be spared pain, and if it were possible, could I please

be spared also...?

Two weeks later, I am told by my oncologist-- who is about to do major lung

removal on me to prolong my life a few months-- that I should sit down. My

lung slides at the hospital were accidentally mixed up with another woman's lung

slides, another soul who was dying of mesothelioma cancer of the lung. My

lungs are healthy they tell me. I had to hold my husband up he was so weak with

tears. From profound grief to profound relief in a second. It was earth shaking

and earth shattering. I still cannot go into a hospital even well, without

feeling afraid.

(When in Wash recently, I could not have managed as well to walk into that

hosp for the endoscopy if were not by my side, holding my hand--and the

warmth of so many in Wash after that hospital visit, helped also. ) I appear

to have still quite a case of post-trauma stress syndrome. I am not

incapacitated by it, in fact, i have been able to help many others with the same

'shock

syndrome' bec I understand it from the inside out. But, I feel afraid of docs

and of hospitals and those who i am vulnerable to, whom I am supposed to

entrust my health to. I am slowly working to build up my trust again, with

vigilance about and over those who are supposed to be watching over me (grin). I

had

7 Ct scans, 3 MRIs, one PET scan within that one year, and that worries me

also.

So here i am four years later now from surgery. My surgeon is a 'celebrity'

now who does not care to speak to his long ago patients. I spoke to him twice

in four years, each time for less than a minute. Recently when i wanted to

inquire about fear of my diabetes returning, his nurse said he was " way too busy

to return calls. " So in that regard, I have had to turn elsewhere to try to

find my way.

I was 251 when I had surgery 4 years ago. I lost to lowest weight, 180 in 10

months ( hard to tell if that was bec so sick, or natural weight loss). The, I

regained to 208 in 18 mos out from my rny proximal where I have stayed from 2

and a half years. I am 5.4 and 1/2. I have had normal blood sugar every day

of my life for four years, usually around 90-98 (the range is 70-120 for

normal blood sugars.) Mine used to be in the 400s, impossible to get down to

normal. Could only get to mid-200s if I ate nothing but water and fish. For my

normal blood sugars now, regardless of all that went so very wrong after

surgery,

I am grateful for this surgery. So grateful. In diabetes, high blood sugars

eats away at the organs, eventually destroying them and you die from kidney

failure, liver failure, heart failure, but in the meantime your veins and

arteries

are injured daily, thus eventual gangrene of the extremities and blindness.

Despite the 28 pound weight gain after the first 18 months, I literally have

met the rny expectations of my surgeon: to lose half of one's excess weight,

and have a moderate bounceback. I carried myself with pride at 251, 180 and

208, regardless. It's an attitude, remember? (grin). I have way more than my

share of attention from others regardless of whatever weight I have carried.

But,

I have not always felt at optimal health. Now, I have been deeply concerned

that my diabetes can come creeping back if I dont wrassle this late gain to the

ground.

When I saw Dr. Oh, he said, my stomach had grown into a long channel and that

to be a lower weight I would have to eat about 800 calories a day or less,

for life. In the last three weeks, I decided to test that to some extent, and so

upped my exercise, and dropped my calories, including even traces of sugar,

dense carbs and anything that might have hidden milk in it. Dropped from 208 to

196 in three weeks. So, I know the tool works, and though I am hungry, I just

felt so much better at 180, and remember weighing 140 in young adulthood and

how good I felt, that I would like to try to get there if I can. I continue to

look into revision, but also feel scared in irrational ways--but I think it

is only because of my hellacious post-rny surgery experience. IN all, I can use

al the help I can get.... grin

So there, you are dear brave souls, that is a lot of my story from then to

the present. Just hang in there. We all struggle toward good health and

happiness. We are risk takers and experimenters and in the vanguard of a way of

life

where none have gone before. Dont' forget that... we go where no one has yet

gone. We are the point men and women. That we are trying to do it together,

matters to me so.

God bless you all,

love,

ceep gmom