Re: Bert--and a BS question

[Guest guest]

thank you for your inspiring words. I am trying to keep a positive

attitude but it seems so hard when each day brings about something

that hinders my recovery. Finding my place in the world is easier

said then done tho.

Maybe you can help me on a diabetic question tho. I had the tp-ict 7

months ago. the harvasted over 600K islet cells and the transplant

was a complete success. 4.5 weeks ago I had to have emergency

surgery and since then my sugars have been through the roof. Close

to 300. I understadn the post surgical stress and how it can raise

bs. However, yesterday I took the approroate amount of insulin to

cover my dinner and desert. Went to bed and woke at about 1am

feeling horrible checcked my BS and it was 30, I was very sick and

felt as tho I was going to pass out, got some juice in my and my

sugar went to 112. I went back to sleep and woke about 8ish hours

later and checked my fasting BS and it was 283. Now how the heck did

I go from 30 at 1am to 112 to a fasting of 283 8 hours later. That

has me totally confused. I am afraid to take any more insulin; 283

aint gonna kill me; but I did after my coffe and bagel this morning

because it went up to well over 300. Now I am afraid to eat anything

and I feel lousy. I can understand the 30, my islets must be waking

up but I dont understand the 283. Any thoughts on that would be

appreciated.

Warmly,

[Guest guest]

I have no practical experience with blood sugar regulation but I

was wondering in the theoretical sense if what you are

experiencing is a delayed response of your liver releasing

glucogan (glucagon? glucogen?) in response to your

hypoglycemic state.

That is, you were very hypo at 1:00 in the morning, you took your

sugar drink but in the meantime, your liver got into the act to

release stored sugar and so you got really out of whack when

you tested again.

I am not sure if this is how it works in the real world......it is just a

thought that crossed my mind when I read about your wildly

fluctuating BSs.

laurie

[Guest guest]

,

Sorry I was not able to respond quicker to you. I just got out of the

hospital YET AGAIN for DKA! So, yes I totally understand your frustrations

regarding blood sugar maintenance post TP/ICT.

I tested pre-surgery for the TP/ICT as totally non-diabetic and having a

healthy amount of Islet Cells. However, the surgery went more problemantic

than was expected and it took more than 12 hours to do it all and they had

to man-handle the pancreas to get it out. They were only able to harvest

about 250,000 islet cells. Less than the 300,000 they want to prevent

diabetes. That you had 600,000 or so cells harvestable is awesome! But as

you know many can die in the process, and no one knows how well they will

fare in the new environment. But you have an awesome starting number.

Hopefully your instabilities will improve with time, getting use to managing

diabetes, eating, stress and how it impacts your BS levels and so on. It is

a very tough thing, diabetes is a very hard to manage disease even in more

normal circumstances.

As I have been made to understand it, the islet cells are made of alpha and

beta cells and they do different things to help maintain stable bs levels.

What exactly they do I do not know yet as I haven't done my research yet.

But the concern on my issues is that I do not have enough beta cells. But

they did a C-Peptide test to see how much insulin I am making on my own and

it came back less than normal but not so horrible. There is hope I will get

my stuff under control. So you should talk to your endocrinologist about

getting the C-Peptide test done if you haven't. That can help them a lot.

So my issues are like yours in that I spike and plunge. I just do so more.

Especially on the spiking part. If I eat exactly what I should eat I can

spike up to 500 and beyond with no rhyme or reason. If I eat a little less

than I should or if I overcompensate with extra insulin I plunge to the

40's. It really sucks. When I plunge I take my rescue glucose or some juice

and then I go too high.

Another thing to consider is that it appears that people that have

autotransplants can have an underlying Type II diabetes going on that would

not really be very noticable if it were not for having fewer effective islet

cells. And so you get both insufficient insulin creation AND insulin

Resistance. This is probably what is my problem. The doctor recently added a

med to my lantus and humalog regimine called Prandin. I take 4 mgs. with

each meal, and 2 mgs with the bed time snack. I have been running in the

90's to 150's since that med. If things maintain this stable they may try to

up my lantus, down my humalog and base my humalog adjustments totally on

carb counting and not just a sliding scale to get ahead of the curve. If all

goes well I may be able to do away with most of the before meal humalog and

just use the pills and the lantus at night.

It is a lot to consider. It is way more complicated then I was made to

believe. I honestly thought that I would remain in some kind of stasis and

be able to just take the insulin I needed to cover my meals. It is nowhere

that easy.

Best of luck to you and hang in there!

Bert

--

" What we do in life echoes in eternity. "

Maximus Decimus Meridius

" Every facet, every department of your mind is to be programmed by you and

unless you assume your rightful responsibility and begin to program your own

mind, the world will program it for you. "

attributed to Lilly

Sin lies only in hurting others unnecessarily. All other " sins " are invented

nonsense.-- Heinlein

[Guest guest]

Thank you for the input Bert, I truly appreciate it. I am so sorry

that you have been having such a difficult go. I hope things will

clear up for you soon. Having those hypos like that is a horrible

feeling. When it dropped to 30 I thought I was just going to pass

out. It was all I could do to drink the juice. I have had several

of those one induced a massive seizure and I was rushed by EMS to the

hospital. My daughter found me writhing in my chair and called 911.

It was weird but for about 4 days after every muscle in my body was

sore, like I had done a major gym workout.

I need to find a new endo doc. I was seeing this guy that was highly

recommended and he and his nurse were by far the ugliest and most

unprofessional team I have ever met. They treated me and thier other

patients with such disrespect I was dumbfounded. At 8 weeks post op

after the total he dumped me. Told me I was fine and did'nt need to

come back any more. Again I was profoundly dumbfounded. What a

jerk! I did have a c-peptide a few weeks ago with my surgeon and it

was 1.5, within normal limits but on the low side. As soon as I get

strong enough to get around a little better I am going to start

looking for a new endo.

I sure do hope you get things straightened out soon. Keep in touch

and let me know how things are going. There aren't too many of us tp-

ict's out there so we need to stick together and compare notes.

Warmly,