6 yrs post transplant (almost)

Every year I have metabolic testing done to see how my islet cells are functioning. This week I had 2 of 4 tests and both had excellent results. May will be 6 years since I had my transplant and it still freekin amazes me!

It changed my life in such a basic fundamental way that it's difficult to explain just how amazing it really is. When a disease is all encompassing like diabetes is, it becomes woven into your life. It has to or you can't survive. It effects everything from what you eat to how you make your living to the people you're friends with and every, single, choice you make, is made in the light of, "How will my health be effected by this, and how will this choice be effected by my health?". It's no wonder there are so many people burned out by Diabetes. (Doctors, there's a lesson for you here about your lazy non-compliant diabetic patient that just won't listen to reason).

Diabetes wears you down, it can be oppressive, daunting and down right scary. To have that constant burden lifted after 26 years of it is nothing short of a miracle.

I wake up every day and I say a silent thank you to my donor and their family, to Dr. Jose Oberholzer, the University of Illinois Hospital, Chicago Diabetes Project, and especially, especially Cellmates On The Run, the charitable organization that helps fund the CDP through raising money by running in races and marathons throughout the year. If you have diabetes, or know someone that has diabetes please consider donating or even better running with them. There are still charity entries for the Chicago Marathon open. You can find their website here.

thank you

oh and

Yayislets!

Vaccinations and Small County Livin'.

I live in a small county right next to a much more populated county, and by "right next to" I mean quite literally, across the street. The kids from the schools that are closed due to H1N1 in my county could throw stones at the kids from schools closed due to H1N1 in the county next door. Oh wait. the majority of them go to the same schools. but guess what? (I bet you've already guessed where I'm going) The peoples in the more densely populated county right across the street, working in the same offices. going to the same public places and the same schools, have access to H1N1 vaccinations, and the peoples in my county? Not so much.


Big county next door got H1N1 vaccinations almost two weeks ago. Podunk county? Three days. I called both counties offices. Big? available to the highest risk group, kids, people working with kids, pregnant peoples and people with compromised immune systems. Podunk county? They've got them but not for the chronically ill and immuno compromised unless you happen to be under 19.

So what's a paranoid girl to do?

Travel 10 hours round trip to Chicago to the clinical research center at UIC on Monday. They've got vaccinations for all of the patients in the study, and I oh so appreciate that they do, but Monday's going to be a long long day for one silly shot that IMO should be available right next door.

I was never paranoid about germs before immuno suppression.

Really.

I wasn't.

How Many Layers Can A Girl Wear?

It's seriously cold here. I am currently wearing long underwear and two pair of pants, a tank top, two t-shirts, a sweatshirt and two pairs of socks. And I'm still cold. Why don't you just turn the heat up, you ask? Well, let me tell you and you know I will. My partner is one of those freakishly warm people who enjoys subzero temperatures and high winds. And I live in an old old apartment building, so no matter what I do, it's still cold and really there's only so much I'm willing to spend on heating when it's pointless.

So I layer. It's not attractive. Good thing I've been married 20yrs and Melissa no longer cares what I'm wearing as long as I shut up about the cold.

What you ask does that have to do with diabetes or islet transplantation?

absolutely nothing.

if you want related material, my bloodsugars have been awesome this week.

Yaycellcept!

My sister's doctor but her on glipizide for the last two weeks of her pregnancy and she's been testing her blood sugar 6x a day like a good momma. I'm so proud of her. She grew up watching our mom and I with diabetes and she's doing it for the new squeak so she has some incentive but still. You gotta give it to her for not just deciding that for two weeks they'd be fine on diet/exercise. Diabetes aside, she's a better mom then I'd ever be. I've always known that. It's why I love her. She's given me kids to claim as my own and spoil. I'm keeping my fingers and toes and eyeballs crossed that her gestational diabetes leaves and that diabetes doesn't rear its ugly head again. In her or her kids.

Geh, I hate this stinking disease.


Have I mentioned lately how much I love islets?

Yay!

For Parents of Kids With Diabetes, or...

Or anyone feeling the impact of diabetes on daily living.

International Diabetes Federation's magazine Diabetes Voice, October 08 issue is focused on DAWN in young people.

DAWN - Diabetes Attitudes, Wishes and Needs was a study done in 2001 to assess the psychosocial obstacles that people with diabetes face in striving to obtain optimal health and quality of life. While the original study focused on adult issues, DAWN Youth is well, youth focused.

If you are so inclined, you can find the October 2008, Vol 53 issue of Diabetes Voice here.

Interesting Stuff.

I recommend.

World Diabetes Day - Monuments In Blue

One goal of the International Diabetes Federation this year was to have 500 buildings and monuments lit in blue for World Diabetes Day. They got 1039!

Michigan had one.

Yay Saint Mary's In Grand Rapids! for lighting Lacks Atrium


The country with the most monuments and buildings lit? Argentina with 193.

Municipalidad de Villa Constitucion.



The US had 36.

Sears Tower, Chicago.


United Nations, New York.


Niagra Falls, Niagra, NY.


and because I think its fitting and funny as hell,

Manneken-Pis, Brussels, Belgium.



Peeing blue for me and you!

Find monuments and buildings in your area listed here

World Diabetes Day

No Random Entertainment today

Watch non-random type diabetes video instead.

yaydiabetes!

wait.

no.

yayIDF!

Switching Meds

I'm waiting to switch immuno-suppression medications, from Rapamune (sirolimus) to Cellcept, mainly because of the incessant mouth ulcers and constant need to sleep. Why are you waiting you ask? Well let me tell you!

My lovely insurance company won't cover Cellcept if I purchase it through my local pharmacy. It needs to be ordered through the company's mail order pharmacy. Generally, I don't mind waiting the week to ten days (or sometimes longer) it takes for them to get my medications to me. Last week, however, I had a daclizumab infusion to cover me during the switch over, I had that lovely little allergic reaction I wrote about and I'll be damned if I want to have gone through that bit of fun for no reason because my insurance company is slower then, (c'mon you know the phrase, sing it with me!) molasses in January.

I appreciate that I have insurance, don't get me wrong. plenty of folks out there are uninsured and for the most part I have pretty good coverage. I just wish they'd move a little faster.

Oh and you know what? I'm still on my full Sirolimus dose, have had the Daclizumab so my immune system is extra suppressed, and since Friday my mouth ulcers are gone! 7 days! No pain! Yay! But really, what's up with that? I finally give in to them and they just go away? It's not right! They should go away after I've started Cellcept so I can feel like switching was the right thing to do! Cause, there's a reason why they start us all out on Rapamune. It's a stronger medication. That;s why I put up with mouth ulcers for so long. I was afraid Cellcept wouldn't be as nice to my islets. I'm still going to switch. I'll just have to shove my fears aside, cross my fingers, and trust that all will go well.

I'll do that.

Fo sho.

Soon as it gets here!

If You Wear Medical ID

How often do you have people asking about it?

I wear mine everyday and I rarely have comments or questions about it. I don't mind when I do qet questions. I'm a big fan of Medical ID. Every one should have one, but today a co-worker asked me about mine so that she could order one too.

Now, I only get asked about once a year.

If that.

Maybe.

Normally, as I'm writing down Road-ID's URL for them (f.y.i. it's the links at the side), I get to hear about the questioner's own chronic illness, or that of someone else they know. So, the diabetic of interest that triggered said conversation today that I am forever meant to have an instant bond with, because we are sisters in the fight?

Her cat.

*sigh*

And in the end, I know you're left wondering, just as I was.

Who buys medical ID for their cat?

yaycrayZee!

Ponderings on Family, Diabetes and of course, Research.

Ever feel like you're stuck in your head and you can't get out?

I've been thinking a lot about diabetes, the quest for holy grail, erm, diabetes research, and my family.

Family first right?

My parents both died six years ago. My mother was type 1 and died of complications of diabetes. Specifically, hypoglycemia in combination with cardio-vascular disease. My father, who was type 2, died of lung cancer, just 10 weeks after my mother and 8 weeks after his cancer diagnosis.

My oldest sister, Lisa, died this spring waiting for a liver transplant. She had diabetes also. Hers was a complication of cirrhosis. And now, my other sister is pregnant and has gestational diabetes. She's active, she's not overweight, she eats a healthy diet and yet still she got hit with it. Chances are it will go away when the baby is born, but the thing is, you never know. My sisters were adopted, so why did they end up in a family of diabetics? Who knows. The only person left is my brother and sometimes I wonder when he's going to call me and say "hey guess what? me too!" I hope it never happens, but still. I wonder.

It's as if we're cursed. Six people, five with four kinds of diabetes (three if you count cirrhosis induced diabetes as type 2). If you go back before my parents, there is no history of diabetes at all, on either side of the family. I know there are a number of factors influencing the increase in diabetes diagnoses in the past 100 years, including better diagnostic measures, increased average life span and the fact that people live longer with diabetes and are therefor breeding more of us into the gene pool. The media seems to forget these points when they talk about how fat and lazy our society has gotten. I'm not dismissing lifestyle, but lets not dismiss genetics and better living through medicine either.

So what to do? Not breed? Of course that's no answer. After all, it might prevent my children from getting diabetes but it doesn't help those of us already diagnosed. Live a better lifestyle? Good advice for everyone, it's easier said then done and, again, not much use in preventing diabetes if you've already been diagnosed, not to mention, it also doesn't prevent autoimmune diabetes. So we look to researchers for a cure, which sadly (and frustrating to everyone involved I'm sure) is not an easy endeavor. The body is a weird weird complicated thing to say the very least and one thing I've learned through out the whole transplant experience is that islets don't like to be messed with.

For each islet transplant there is usually more then one isolation done before an adequate supply of well functioning islets are obtained and able to be infused. Also, many patients need more then one infusion to be insulin free. UIC's program has managed to narrow that a bit and I was fortunate. I've only needed one infusion of islets to get off and stay off of insulin for two and a half years so far. I say so far because there are no guarantees. I understood that when I signed on, I still understand and accept it now. But what does the whole thing mean?

It means, at this point, if islet cell transplants were pushed forward into standard diabetes care and out of clinical trials that a large number of people would be put on a waiting list for one (or however many it takes before they get enough qood quality cells isolated that they can transplant) of very few available pancreases. And then, if the patient is able to get off of insulin with hopefully, one infusion, will their immune system still destroy those cells even with anti-rejection meds? Will the immuno-suppression meds be toxic to the cells because islets are that fragile? Will the immuno-suppression meds make the patient sick enough that quality of life isn't any better then before transplant? And then, will the patient be compliant and do their part in safeguarding themselves and their newly procured cells? Is a big undertaking by all involved.

So you see, there's a lot to work around when it comes to curing diabetes, be it through islet transplantation or other methods. No medication is with out side effects and no matter how you look at it messing with the immune system is going to have its pitfalls. If it were easy, it would have been done years ago, like back in the 80's when my doctors kept saying "there's going to be a cure in the next 5 to 10 years", and then said it again 5 years later. A lot of us with diabetes gave up holding our breath the second or third time we were told that. Funny though, I haven't heard it in a long time. well, not until I got my islets. Oddly enough, even though I think i understand the difficulty of it all. I think I believe once again in a cure.

For type 1's. But what are we doing about type 2? or LADA or any of the MODY's out there? We need more funding for research, durn it!

*sigh* see what I mean? These are the things that get stuck in my head and I'm in no way qualified to find answers. So they rumble around, I don't sleep, and I think.

Once again, I just need to get out of my head...

Diabetes Handprint

Last year TuDiabetes.com did the Word In Your Hand Project. If you're not familar with it check out the resulting video here.

This year TuDiabetes is partnering with One Touch for The Global Diabetes Handprint. For every entry $5 will be donated to to one of two non-profit organizations - Diabetes Education and Camping Association or Taking Control of Your Diabetes. You choose.

This is my submission from last years Word in a Hand.



This is my submission to this years Diabetes Handprint.



*because there's a fine line between feeling like this disease is endless and hoping for a cure*

If you decide to submit a photo. E-mail me at parrotletzoo@gmail.com or link me to it in the comments. I'd like to see it.

thanks.

Lost meter and Chicago

I lost my meter.

"Which meter", you ask, "good dog woman, you have like 50 of them!"

Yeah, I have many many meter, but I lost the one I use every day. You know, the one that's become part of me because it has more blood on it and in the pockets of it's case then I have in my veins. It has my numbers from the last three months, unlogged because I'm a slacker and I always wait until two nights before an appointment to write them down. I used it as my wallet. It had my debit card, my credit cards, my insurance cards, my pictures of my girls!! gah.

I canceled my cards, that was a minor inconvenience, I had a spare insurance card, but I'm totally totally sad about losing the girls photos and the note that Kate mailed me when she was four. I shall be sad until I find it or well, always, even if I have every line, every scribble, every X and O memorized. You just can't replace that. *sigh*

On the Chicago note. I was nauseous and pukey the morning of my appointment (as I have been on and off for months) so they're trying to figure out why. My blood sugar was a little high for fasting and that might be the problem but so far I think we're leaning towards "you're on meds that make you nauseous and pukey". hrm, yay. I said I'd be willing to switch meds if they felt it was necessary but I wasn't asking for them to be changed. (make sense)

My a1c was up to 6.4 from 5.9 and they lowered one of my med doses because I keep getting mouth ulcers. Dr. Transplant was out of town and he returns this week so I'll know more later on in the week what they decide to do with my goofy self.

Meanwhine i'm whiney.

I shouldn't be I haven't really had huge issues with the immuno supresssion meds, just a lot of minor annoyances which add up to be a big pain in the booty.

Maybe, just maybe, if we get the nausea and mouth ulcers under control I won't feel so rollercoasterish and pessimistic about the whole islet transplant experience, because over all it really has been good. My online friends just get to hear the ass end of it all.

So hats off to those of you that keep coming back for more! I appreciate it.

Thanks for listening.

Yayyou!

oh hey! new picture of the bird sitting on my head. He likes my new hat! Me too.

Because I Can Be Incredibly Annoying

I emailed every major newspaper in my state about World Diabetes Day with a simple message and link to press information.

And I'll do it again tomorrow, and the next day and, well, you get the idea.

Last year, I didn't see anything in Michigan media about World Diabetes Day. Maybe I missed it, but I was looking and didn't see it so that leads me to believe that people not looking had no idea what was going on.

I'm on a mission!

You can help. Send emails to

Pat Anstett, Medical writer, panstett@freepress.com
Kim Kozlowski, Health & Social Services, kkozlowski@detnews.com

or send an email to your local paper. Most newspapers have links on their websites to submit news tips or press release information.

A sample of the email I sent is in the comments.

Dr. Denise Faustman Interview

If you frequent some of the larger diabetes boards you've probably come across this already. If not, its interesting. watch.

Interview: Type 1 Diabetes Cure Trial from David Edelman on Vimeo.

Somedays

I want insulin.
I want to go back to my pump for good.
I'm tired of meds with more side effects then I sometimes think they're worth.
And I'm tired of doctors.
And my stupid body not doing what it should.

Somedays I think I understood it better before I had islets.

Somedays, I get frustrated
with everything.
Somedays I want to go back to the way things were before,
It was difficult, but it was familiar.

Somedays, I want to scream
And I feel sorry for me.

Today's a someday.
*sigh*

Silly Cells

My borrowed islets needed a break or something yesterday because today all is normal. It doth confuse me. Really it do...

Stupid Islets

Today for some ungodly reason my islets went on strike and my bs is 210. Ratbastards get to work! Hopefully, tomorrow will be a better day.

The Diabetes Rap

The only explanation I can give for some of the videos I post is "You watch TV, I watch YouTube".

Once again, I prove myself to be a dork.

You ask and I answer.

I got this email.

Can you tell me good book about diabetes?

um, ok, sure. Why random strange person felt the need to emai me and ask me which Diabetes related books I enjoy, I have no clue but I shall oblige.

Here goes:

Cheating Destiny, by James S. Hirsch

Using Insulin, Everything You Need to Know For Success With Insulin, by John Walsh, et al. check out his website too, tis goodly. www.diabetesnet.com

Think Like a Pancreas, by Gary Scheiner, and Barry Goldstein

and of course the ever popular

Mr Hypo Is Your Friend. by unknown, if you know the author let me know I'll give due credit, however it matters little since it is no longer in print. see my post about it.

Have any recommended reading you'd like me to add to the list? Let me know.

(yes, tis a direct quote from email I received)

Labs. Labs, Labs

I got my most recent labs. woot!

A1c: 5.9
urine protein; negative
and pretty much everything else was normal too except I'm still anemic and that I can deal with.

Who needs red blood cells anyway?

Kidney functions and Metabolic Testing

Prior to my islet transplant my kidneys were spilling protein into my urine. Two years later there is improvement and the protein in my urine is less. I don't have numbers because I didn't ask for them. Bad me, but I was just happy about the improvement and not worried so much about the technicalities of it all.

The results of my metabolic testing were goodly. All normal like so I'm still non-diabetical.

I'd like to line up all of the islet researchers in the world and give out hugs and stickers and all that happy crap!

yay!

I heart islets, really, I do!