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!
Showing posts with label Islet Transplant. Show all posts
Showing posts with label Islet Transplant. Show all posts
Wednesday, February 15, 2012
Saturday, October 2, 2010
Long Time No See
I can't believe it's been over two months since I've posted. Yikes! Time flies when you're uber busy with, um, stuff.
In August my A1c was back down to 6.0, exercising has paid off. Big surprise eh? Yeah, the hard part was finding a form of exercise I really enjoyed cause I've always been the "running is for when scary people chase you" kind of gal.
That being said, I discovered skating and I've become a tad obsessed. Now when I say skating I don't mean the Dorothy Hamil kind or even the skateboarding kind, which I do enjoy, I mean the put on some quad skates, a short skirt, a bad attitude, and knock your fellow roller girl over kind of skating. Yep, I joined my local roller derby and I think I'm in love. ;)
Skating on an almost daily basis however has done some weird things to my blood sugars. I've started having random lows in the range of 50-70 about once a week and I have to stop to eat after skating an hour or so to refuel or I definitely feel low. Power bars and Taco Bell have become my best friends.
My shoulder is still screwed up, it's not as painful but I still don't have full range of motion. I have an appointment with an orthopedic doc in a couple of weeks. Hopefully he'll have something new to suggest. If not I guess I'll have to try PT for the third time. Or I could just ignore it and hope it goes away. I'm sure the latter would not be approved by Dr. Transplant and the folks at UIC. ;)
and speaking of approval, I haven't mentioned the whole Roller Derby thing to them so, yeah, shhh! cause exercise, good, track rash from not so sanitary track floor, not so good.
In other news
October 11, I'll be in Chicago for "dinner and dialogue" with the folks at the Chicago Diabetes Project. I'm looking forward to it. In addition to being able to meet my fellow islet transplant recipients, and learning something new about the whole process, I'll also be able to talk to the research scientists that make it all possible. That, to me, is the best part cause how do you say thank you for something like that? For the most part they're behind the scenes and don't get to see the results of their efforts. Hopefully being there to say thank you in person will make things more tangible.
what I'd like to do is line them all up and hug the shit out of 'em.
woot!
yay scientists!
and I'm off
cause I'm late and there's a pair of skates and wood floor nearby that have my name on them....
In August my A1c was back down to 6.0, exercising has paid off. Big surprise eh? Yeah, the hard part was finding a form of exercise I really enjoyed cause I've always been the "running is for when scary people chase you" kind of gal.
That being said, I discovered skating and I've become a tad obsessed. Now when I say skating I don't mean the Dorothy Hamil kind or even the skateboarding kind, which I do enjoy, I mean the put on some quad skates, a short skirt, a bad attitude, and knock your fellow roller girl over kind of skating. Yep, I joined my local roller derby and I think I'm in love. ;)
Skating on an almost daily basis however has done some weird things to my blood sugars. I've started having random lows in the range of 50-70 about once a week and I have to stop to eat after skating an hour or so to refuel or I definitely feel low. Power bars and Taco Bell have become my best friends.
My shoulder is still screwed up, it's not as painful but I still don't have full range of motion. I have an appointment with an orthopedic doc in a couple of weeks. Hopefully he'll have something new to suggest. If not I guess I'll have to try PT for the third time. Or I could just ignore it and hope it goes away. I'm sure the latter would not be approved by Dr. Transplant and the folks at UIC. ;)
and speaking of approval, I haven't mentioned the whole Roller Derby thing to them so, yeah, shhh! cause exercise, good, track rash from not so sanitary track floor, not so good.
In other news
October 11, I'll be in Chicago for "dinner and dialogue" with the folks at the Chicago Diabetes Project. I'm looking forward to it. In addition to being able to meet my fellow islet transplant recipients, and learning something new about the whole process, I'll also be able to talk to the research scientists that make it all possible. That, to me, is the best part cause how do you say thank you for something like that? For the most part they're behind the scenes and don't get to see the results of their efforts. Hopefully being there to say thank you in person will make things more tangible.
what I'd like to do is line them all up and hug the shit out of 'em.
woot!
yay scientists!
and I'm off
cause I'm late and there's a pair of skates and wood floor nearby that have my name on them....
Sunday, June 27, 2010
On the Islet front.
My trip to Chicago for the most part went well. My islet cells are still producing huge amounts of insulin while by blood sugars are running a little higher then they should. Why I'm having issues with insulin resistance is a puzzle since I'm not over weight and didn't have resistance before my transplant. The game plan now is to increase aerobic exercise in order to increase insulin receptors in my muscles.
I have since started walking minimum of 3 miles a day and I'm seeing some results already in my fasting blood sugars. Now we just need my post meal numbers to start coming down a little faster!
While in Chicago I had a test called CIMT done. CIMT is an ultrasound of the walls of the carotid (neck) arteries, the thickness of which can be reflective of the health of coronary (heart) arteries. I also accidentally had C-reactive protein (a marker for heart disease) tested instead of c-peptides. Both the carotid artery u/s and c-reactive protein results were excellent. Which makes me happy since I've had diabetes for 30 years, been on cholesterol lowering meds for 20, and both of my parents had heart disease at a young age.
Kinda makes me feel like I'm doing something right. It's either my snack obsession with popcorn or celery. I can't think of anything else I do all that consistently, but eat those. ;)
I'm guessing its the celery.
or else the popcorn.
It is a whole grain after all...
Green Bean. Caught in the midst of mischief. Naughty bird likes wires.
I have since started walking minimum of 3 miles a day and I'm seeing some results already in my fasting blood sugars. Now we just need my post meal numbers to start coming down a little faster!
While in Chicago I had a test called CIMT done. CIMT is an ultrasound of the walls of the carotid (neck) arteries, the thickness of which can be reflective of the health of coronary (heart) arteries. I also accidentally had C-reactive protein (a marker for heart disease) tested instead of c-peptides. Both the carotid artery u/s and c-reactive protein results were excellent. Which makes me happy since I've had diabetes for 30 years, been on cholesterol lowering meds for 20, and both of my parents had heart disease at a young age.
Kinda makes me feel like I'm doing something right. It's either my snack obsession with popcorn or celery. I can't think of anything else I do all that consistently, but eat those. ;)
I'm guessing its the celery.
or else the popcorn.
It is a whole grain after all...
Green Bean. Caught in the midst of mischief. Naughty bird likes wires.
Saturday, April 24, 2010
Chicago and Back Again
I went to Chicago this weekend for yeartly metabolic testing. This time the results weren't exactly what I wanted to see.
The first test, an oral glucose tolerance test, my blood sugar spiked at 216, which isn't all that bad, but it ended at 152 when it should have been under 140. They also said that my c-peptides were high. Really high. like 9.6 when the upper end of normal is around 3.4.
Once again I don't think they really know what to do with me because they're not sure why I get the results I do. They've mentioned that it could very well be my weird anatomy and whacky vasculature, but like I said. they're not sure.
I have two more sets of metabolic tests to be done in June and hopefully they'll be more normal like. We'll see, until then I haven't been told to change anything.
On the non islet front, I was diagnosed this past week with frozen shoulder. It's fairly common with people that have type 1 diabetes and I'm not sure what triggered it, but I start physical therapy this week. yay
Dr. O at UIC has reluctantly said I can use Motrin if I need it during P.T as long as I drink a lot of water to help protect my kidneys. Nsaids in combination with immunosupression medications are harsh on the kidneys.
Yet another good reason for islet cell encapsulation to be approved for human trials soon. And that sadly takes funding on a national and private level, neither of which are free flowing in the current economy.
*sigh*
we all want a cure, no one wants to fund it.
btw. this months donation goes to CellmatesOntheRun because Dr. O ran in the Boston Marathon on Monday. And how else to I say thank you for being a crazy person that runs all the time to raise money for people like you and me?
The first test, an oral glucose tolerance test, my blood sugar spiked at 216, which isn't all that bad, but it ended at 152 when it should have been under 140. They also said that my c-peptides were high. Really high. like 9.6 when the upper end of normal is around 3.4.
Once again I don't think they really know what to do with me because they're not sure why I get the results I do. They've mentioned that it could very well be my weird anatomy and whacky vasculature, but like I said. they're not sure.
I have two more sets of metabolic tests to be done in June and hopefully they'll be more normal like. We'll see, until then I haven't been told to change anything.
On the non islet front, I was diagnosed this past week with frozen shoulder. It's fairly common with people that have type 1 diabetes and I'm not sure what triggered it, but I start physical therapy this week. yay
Dr. O at UIC has reluctantly said I can use Motrin if I need it during P.T as long as I drink a lot of water to help protect my kidneys. Nsaids in combination with immunosupression medications are harsh on the kidneys.
Yet another good reason for islet cell encapsulation to be approved for human trials soon. And that sadly takes funding on a national and private level, neither of which are free flowing in the current economy.
*sigh*
we all want a cure, no one wants to fund it.
btw. this months donation goes to CellmatesOntheRun because Dr. O ran in the Boston Marathon on Monday. And how else to I say thank you for being a crazy person that runs all the time to raise money for people like you and me?
Friday, November 6, 2009
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.
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.
Wednesday, October 14, 2009
Have I Ever Mentioned?
Just how much I appreciate those of you that register as organ donors?
I do!
Yayyou!
p.s if you haven't signed up yet, find your state's registry here
I do!
Yayyou!
p.s if you haven't signed up yet, find your state's registry here
Cellmates On The Run in New York!
Some of the fine folks that ran for CellmatesOnTheRun in the Chicago marathon will also be running in the New York marathon on November 1st.
They'll be listed as a partnering charity.
It's not too late to give some love and donate!
yay!
They'll be listed as a partnering charity.
It's not too late to give some love and donate!
yay!
Monday, October 12, 2009
Appointments and Marathons
I had my quarterly appointment at UIC's clinical research center last Tuesday. My A1C was 6.3 for the second time in a row so I've been put back on Januvia. My fasting blood sugars are good. My blood sugar is staying up longer then it s should and while 6.3 isn't a horrible number I agree with Dr. Transplant that Januvia is a good idea.
My gallbladder will most likely be coming out in January. Unless I have symptoms again, then it will come out sooner.
I also have an angiomyolipoma on my kidney. It's a benign tumor. 2003 is the first time I can remember it showing up on any kind of scan or ultrasound and nothing has ever been done about it. I was told once it was benign but I've never had any follow up so UIC wants it checked out as a precaution. That will be happening sometime in January too. yay
on funner notes
We went to the Chicago Marathon on Sunday. We got there at 7:30. There was a high school race (I think 3miles?) then the wheelchair racers started, professional runners started and then everyone else. It was really cool to be able to be down there to cheer everyone on. I finally lost my voice from yelling around 1pm and we decided to head out even though there were still a lot of people running.
Now, I appreciate even more the runners that raised money for the Chicago Diabetes Project and diabetes research in general. CellmatesOnTheRun wasn't the only Diabetes related charity represented. We saw a few different organizations' shirts run by.
So to everyone that ran for a charity. Thanks!
To CellmatesOnTheRun, especially Dr. Oberholzer for encouraging people to run, and Amber, nurse extraordinaire, for raising more the twice her original goal and for being awesome in general, Thank you!
Yaycrazypeoplethatrunforacause!
My gallbladder will most likely be coming out in January. Unless I have symptoms again, then it will come out sooner.
I also have an angiomyolipoma on my kidney. It's a benign tumor. 2003 is the first time I can remember it showing up on any kind of scan or ultrasound and nothing has ever been done about it. I was told once it was benign but I've never had any follow up so UIC wants it checked out as a precaution. That will be happening sometime in January too. yay
on funner notes
We went to the Chicago Marathon on Sunday. We got there at 7:30. There was a high school race (I think 3miles?) then the wheelchair racers started, professional runners started and then everyone else. It was really cool to be able to be down there to cheer everyone on. I finally lost my voice from yelling around 1pm and we decided to head out even though there were still a lot of people running.
Now, I appreciate even more the runners that raised money for the Chicago Diabetes Project and diabetes research in general. CellmatesOnTheRun wasn't the only Diabetes related charity represented. We saw a few different organizations' shirts run by.
So to everyone that ran for a charity. Thanks!
To CellmatesOnTheRun, especially Dr. Oberholzer for encouraging people to run, and Amber, nurse extraordinaire, for raising more the twice her original goal and for being awesome in general, Thank you!
Yaycrazypeoplethatrunforacause!
Friday, July 31, 2009
Surprise!
Sooo, for the past few months I've been dealing with what I thought was heartburn, an ulcer, one of my meds causing stomach pain or something along those lines, but today I got a phone call from transplant coordinator nurse extraordinaire, and she said in not so many words "surprise! you have gallstones!".
How do they know this?
July I had my annual lets make sure nothing has gone horribly awry with study patient, abdominal ultrasound. Turns out something was awry. I go back to Chicago in a week for an added appointment and I'm sure said stones will be discussed then.
Meanwhile, you can sell your stocks in Tums. Sales will be plummeting. I'm going to stop eating them like they're Skittles.
They never helped anyway.
How do they know this?
July I had my annual lets make sure nothing has gone horribly awry with study patient, abdominal ultrasound. Turns out something was awry. I go back to Chicago in a week for an added appointment and I'm sure said stones will be discussed then.
Meanwhile, you can sell your stocks in Tums. Sales will be plummeting. I'm going to stop eating them like they're Skittles.
They never helped anyway.
Friday, July 24, 2009
Why I Love My Islets
Summertime around here is one crazy whirlwind of a season. Let me explain.
My partner and I have a party rentals / kids entertainment business that for the most part functions April through October every year. In addition to this we both have day jobs that provide steady if somewhat meager wages and medical benefits.
The party business has a bounce house, popcorn poppers, cotton candy machines, and sno cone machines and in addition to that we also do face painting, and balloon twisting for things like birthday parties, church functions and corporate events. This season has been busy to say the very least and this leads me to the reason for the title of today's blog entry.
Today was a perfect example of why I love my islets.
I got up at 3:30am to get ready for my day job.
Worked from 4:30 - 9:00. It was a short day, thank Buddha.
10am we picked up a popcorn popper from a week long rental.
12noon bounce house set up. Now mind you, the bounce house weighs 275lbs, requires four 50lb sand bags to weigh it down, and the only equipment we use to get said items where they need to be are our van and a dolly. (can you say exhausting boys and girls?)
1pm -4pm balloon twisting, and general supervision of 50 kids in and out of the bounce house while their parents take full advantage of an open bar and the crazy lady with the balloons. Meanwhile Moe drove back across town to drop off a sno-cone rental.
4pm tear down, roll up, and load bounce house back into van, while trying to keep curious kids out of the way.
.
5pm drive back across town again to pick up sno cone machine.
6pm get home, unload popper, sno-cone machine, clean and sanitize machines and get supplies ready for tomorrow.
8pm, order a pizza and realize the last thing I ate was a bag of Cheetos at 6:30am.
8:15pm test my blood sugar and its 98.
and that is today's reason for loving my islets. ;)
yaysummer!
My partner and I have a party rentals / kids entertainment business that for the most part functions April through October every year. In addition to this we both have day jobs that provide steady if somewhat meager wages and medical benefits.
The party business has a bounce house, popcorn poppers, cotton candy machines, and sno cone machines and in addition to that we also do face painting, and balloon twisting for things like birthday parties, church functions and corporate events. This season has been busy to say the very least and this leads me to the reason for the title of today's blog entry.
Today was a perfect example of why I love my islets.
I got up at 3:30am to get ready for my day job.
Worked from 4:30 - 9:00. It was a short day, thank Buddha.
10am we picked up a popcorn popper from a week long rental.
12noon bounce house set up. Now mind you, the bounce house weighs 275lbs, requires four 50lb sand bags to weigh it down, and the only equipment we use to get said items where they need to be are our van and a dolly. (can you say exhausting boys and girls?)
1pm -4pm balloon twisting, and general supervision of 50 kids in and out of the bounce house while their parents take full advantage of an open bar and the crazy lady with the balloons. Meanwhile Moe drove back across town to drop off a sno-cone rental.
4pm tear down, roll up, and load bounce house back into van, while trying to keep curious kids out of the way.
.
5pm drive back across town again to pick up sno cone machine.
6pm get home, unload popper, sno-cone machine, clean and sanitize machines and get supplies ready for tomorrow.
8pm, order a pizza and realize the last thing I ate was a bag of Cheetos at 6:30am.
8:15pm test my blood sugar and its 98.
and that is today's reason for loving my islets. ;)
yaysummer!
Monday, July 13, 2009
Labs Labs Labs and Some Irrelevant Stuff too
Ok, I Promised, I shall deliver. Be prepared for boring.
Glucose (fasting) - 98
A1C - 6.0
Fructosamine 243
A1C and fructosamine are a little higher then I'd like them to be, but considering what I've eaten in the past month. yeah, I'll take it.
I don't have c-peptides yet and everything else is normal with the exception of hemoglobin (low at 10.9) and Platelets (High at 515). Neither of there are particularly concerning so yeah. good times.
In other not so interesting irrelevant news, chipmunks keep pulling up the radishes in my garden. I'd be all fine with sharing if they actually ate them, but no, they're like toddlers that want something and then decide its nasty after they try it. I got home from work today and there was a little pile of dried out roots on the ground.
Little buggers! It's a good thing chipmunks are cute.
Glucose (fasting) - 98
A1C - 6.0
Fructosamine 243
A1C and fructosamine are a little higher then I'd like them to be, but considering what I've eaten in the past month. yeah, I'll take it.
I don't have c-peptides yet and everything else is normal with the exception of hemoglobin (low at 10.9) and Platelets (High at 515). Neither of there are particularly concerning so yeah. good times.
In other not so interesting irrelevant news, chipmunks keep pulling up the radishes in my garden. I'd be all fine with sharing if they actually ate them, but no, they're like toddlers that want something and then decide its nasty after they try it. I got home from work today and there was a little pile of dried out roots on the ground.
Little buggers! It's a good thing chipmunks are cute.
Thursday, January 22, 2009
Labs Labs Labs
I'm not talking dogs here.
All of the whining I've done over the past six months or so about my A1c creeping up and my goofy random numbers in the +200's, and this quarters A1c was down to 5.5. I've never had a 5.5 not even in the first year after transplant. Apparently mine islets like the Cellcept better then they liked Sirolimus.
My fasting c-pep was 1.3.
Per usual, my cholesterol is up, so Dr. Endocrinologist switched me from Lipitor to Crestor. hopefully this change will also be good for me.
My TSH (thyroid stimulating hormone) was high, possibly because of the switch in immuno supression meds so my thyroid meds were increased again.
Everything else was all normal like, except for my low vitamin D level which is more likely due to the fact that I live in a state with little sunshine this time of year then to do with anything diabetes or transplant related.
I'm happy about the A1c. Confused a bit because my islets seem to like to randomly function perfectly and give me a most excellent A1c and then go back to their usual goofiness and pop out a high one, so I'm not holding my breath until April. if my A1c is most excellent like again in three months, I'll celebrate.
Oh yeah and my hemoglobin level was 12.6. I'm so donating blood next month if I'm given permission.
yaycellcept!
yayislets!
btw wish me lower TSH levels in five weeks so my stinking energy level gets back to normal. This sleeping 15 hrs a day bites and its bad for my social, erm online life too!
All of the whining I've done over the past six months or so about my A1c creeping up and my goofy random numbers in the +200's, and this quarters A1c was down to 5.5. I've never had a 5.5 not even in the first year after transplant. Apparently mine islets like the Cellcept better then they liked Sirolimus.
My fasting c-pep was 1.3.
Per usual, my cholesterol is up, so Dr. Endocrinologist switched me from Lipitor to Crestor. hopefully this change will also be good for me.
My TSH (thyroid stimulating hormone) was high, possibly because of the switch in immuno supression meds so my thyroid meds were increased again.
Everything else was all normal like, except for my low vitamin D level which is more likely due to the fact that I live in a state with little sunshine this time of year then to do with anything diabetes or transplant related.
I'm happy about the A1c. Confused a bit because my islets seem to like to randomly function perfectly and give me a most excellent A1c and then go back to their usual goofiness and pop out a high one, so I'm not holding my breath until April. if my A1c is most excellent like again in three months, I'll celebrate.
Oh yeah and my hemoglobin level was 12.6. I'm so donating blood next month if I'm given permission.
yaycellcept!
yayislets!
btw wish me lower TSH levels in five weeks so my stinking energy level gets back to normal. This sleeping 15 hrs a day bites and its bad for my social, erm online life too!
Wednesday, January 7, 2009
All Is Quiet On The Islet Front
I had a three month follow up in Chicago yesterday and it was pleasantly uneventful. At least so far. I haven't heard back on labs/blood work and if I don't hear back the same day it usually means nothing is worth calling about. Eventually, I'll get copies of blood work if I request them.
The main issues that were addressed were my cholesterol level, blood pressure and general wellness now that I've been on Cellcept for over a month. I'm betting my lipids are elevated per usual, since that seems to be my pattern for a long as I can remember no matter which med I'm on. My blood pressure has been oddly low and I'm now off of one of my meds for that, and my general wellness has been, um, well. No mouth ulcers, no overwhelming need to sleep 24/7, no feeling fatigued and nauseous all the time.
I'm a whole new me on Cellcept.
With nothing to blog about.
Happy for me. Boring for readers.
I'm not apologizing.
I like it.
yaycellcept!
I'll post lab results when I get them. Promise.
The main issues that were addressed were my cholesterol level, blood pressure and general wellness now that I've been on Cellcept for over a month. I'm betting my lipids are elevated per usual, since that seems to be my pattern for a long as I can remember no matter which med I'm on. My blood pressure has been oddly low and I'm now off of one of my meds for that, and my general wellness has been, um, well. No mouth ulcers, no overwhelming need to sleep 24/7, no feeling fatigued and nauseous all the time.
I'm a whole new me on Cellcept.
With nothing to blog about.
Happy for me. Boring for readers.
I'm not apologizing.
I like it.
yaycellcept!
I'll post lab results when I get them. Promise.
Sunday, December 21, 2008
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!
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!
Wednesday, December 17, 2008
Update On Immunosupression Meds
It's been almost 4 weeks since I started taking Cellcept and three since I stopped Sirolimus. The difference in how I feel is amazing. I have energy and I don't feel the need to constantly nap or sit down or just not do anything. But the oddest thing about Cellcept?
Food actually tastes good. It's a whole world of weirdness for me because honestly, I can't remember eating and thinking, ooooh, yum more! Really, I've always had this mindset that food was a necessary evil and that if I didn't need to or wasn't just eating out of boredom I'd never eat.
So suddenly this week the world tastes a little different and I'm liking it.
Probably not such a good thing for my waistline, but for the moment I'm enjoying it.
Dinner anyone?
Food actually tastes good. It's a whole world of weirdness for me because honestly, I can't remember eating and thinking, ooooh, yum more! Really, I've always had this mindset that food was a necessary evil and that if I didn't need to or wasn't just eating out of boredom I'd never eat.
So suddenly this week the world tastes a little different and I'm liking it.
Probably not such a good thing for my waistline, but for the moment I'm enjoying it.
Dinner anyone?
Wednesday, December 3, 2008
Lets Talk About It One More Time.
Organ donation is goodly. You know it. I know it. There are almost 100,000 people in the United States waiting for life saving organ transplants. I'm talking life saving, not life altering, like um tissue, and cornea (and don't forget pancreas and islet) transplants that improve quality of life rather then save it.
My sister died this year waiting for a liver. She waited three years before she got too sick to survive surgery and was taken off the transplant list. I think the day she was removed from the transplant list was harder then the day she died because we all were thinking the same thing. What if more organs were available? Would she have been transplanted sooner and survived?
At this point, what if's don't mean a thing unless I do something about it so that someone else doesn't have to live with what if.
So I registered with my state as an organ donor
and I'll ask you
once again
to register.
please.
It'll do your karma good!
find your state's registry here.
thank you.
My sister died this year waiting for a liver. She waited three years before she got too sick to survive surgery and was taken off the transplant list. I think the day she was removed from the transplant list was harder then the day she died because we all were thinking the same thing. What if more organs were available? Would she have been transplanted sooner and survived?
At this point, what if's don't mean a thing unless I do something about it so that someone else doesn't have to live with what if.
So I registered with my state as an organ donor
and I'll ask you
once again
to register.
please.
It'll do your karma good!
find your state's registry here.
thank you.
Saturday, November 22, 2008
Is It Irony?
or divine retribution for whining so stinking much?
The same day I started Cellcept I woke up with a mouth ulcer. Two days later, I have another and the first is the largest mouth ulcer I've had to date.
I know, I know. give it time.
Hopefully sans full Sirolimus dose it will resolve quickly.
I'd like a Thanksgiving without mouth ulcers this year.
Thankyouverymuch.
The same day I started Cellcept I woke up with a mouth ulcer. Two days later, I have another and the first is the largest mouth ulcer I've had to date.
I know, I know. give it time.
Hopefully sans full Sirolimus dose it will resolve quickly.
I'd like a Thanksgiving without mouth ulcers this year.
Thankyouverymuch.
Thursday, November 20, 2008
Drugs Drugs Drugs
Two weeks after I ordered it, Cellcept has finally arrived and just on time. I woke up this morning with a mouth ulcer and spent my day in general pukey-ness.
Keep your eyeballs crossed for me that Cellcept will be nice and won't cause such side effects.
Much appreciation in advance and all that!
Keep your eyeballs crossed for me that Cellcept will be nice and won't cause such side effects.
Much appreciation in advance and all that!
Thursday, November 13, 2008
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!
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!
Monday, November 10, 2008
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...
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...
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