Treating the BK virus

BK virus

It was decided that lowering my dose of prograf might not be enough to treat the virus.  An antiviral would be necessary to rid me of the virus completely.

Unfortunately, it must be administered by IV, so I am once more in the hospital.  The antiviral is cidofovir and although it's job is to cure my kidneys of this nasty infection, it is also toxic to my kidneys.  So I also have a second drug, probenecid that somehow protects my kidneys.

I'm having my second dose now and so far so good.  I had a headache and some nausea, but not as much as I had been worried about.  I'll be having future doses at an infusion center as an outpatient which will be more convenient.

My kidneys are being closely monitored as well.  Here are the results for the last three days:

Creatinine 1.65,  1.69,  1.77
BUN .           58,  47,  42

My blood sugars are remaining stable except for an insertion site mishap.  I'm giving up on the Mio insertion device.

No Save November

November has come and gone and most of my issues are resolved.  But I still have a few to go and they are complicated.

I had a colonoscopy, a blood transfusion during a long hospital stay, and finally a kidney biopsy at the end of the month.  The switch from Myfortic to Imuran has resolved my stomach and fever issues.  That helps a lot.  Of course the transfusion solved the anemia problem.  But, I'm still not there yet.  My kidney function tests are still abnormal.  And despite the elimination of the energy depleting problems that I just mentioned, I still tire very easily.  I've developed a strange headache that seems to be triggered by motion.

The kidney biopsy has yielded a surprising result.  It was done to determine if it was the Prograf that was causing the stress to my kidneys.  It turns out that I have a viral infection in my kidney of the BK virus.  Its common in kidney transplant patients.  The treatment is lowering the dose of immunsuppression.  My doctors will be discussing how to treat this later today.

my soap

My blood sugars have been running higher lately.  I'm up to about 20 units/day now.  I think that part is due to my lower level of exercise.  I just don't have much extra energy right now.  That seems to be getting better and now I'm wondering if the kidney infection might be a factor in that.

I did have a few nice things in November.  I had a good time learning to make soap with a friend and we have a few good batches to give out for Christmas.

And, I was made the Advocacy Team Chair(ATC) of the Northwest Ohio Chapter of the JDRF.  I haven't been able to do much so far because of all of the above, but I'm excited to do this.  I'm attending the walk awards ceremony this week and am hoping to meet some of the Toledo JDRF board and find out how I can fit in.

December is here now, and my goal is to get back to a normal live before the end of it.

Hemoglobin Surprise

Just when I thought that all of the pieces were beginning to fit together, I was sideswiped by a new problem.  While at work, I received a call from my nephrologist's office.  My hemoglobin is dangerously low (6.6) and I need to come to the hospital to be admitted.  Yikes.

I was aware that the last hemoglobin was lower than normal at about 8.6, but I attributed that to the fact that I'm not taking my vitamin with iron any more and the fact that my stomach has decided that I don't like meat much anymore.  I ate a few helpings of spinach and didn't really worry about it.

After getting the call from my doctor, I headed home to pack and let a few people know what was happening.  I called Minnesota, but Dr. Bellin was out.  Dr. Hering would be informed.  When I was admitted and put in my room, I learned that I was supposed to be receiving a transfusion.  This alarmed me because I wasn't sure what the affects would be to my islets.  After some deliberating, it was decided that Erythropoitin would be administered to see if it would raise my hemoglobin.  The next day, I was up to 7.1 and thought everything was fine.  Crises averted.  But the following day, I dropped to 6.3 and the next day to 6.2.  I was feeling just awful and it was decided to go forward with the transfusion.  Due to Dr. Hering's input, I received blood that was CMV negative, irradiated, and HLA washed to remove as many antibodies as possible.  I got 3 units and started to feel better that day.

My hemoglobin went up to 11.6.  I wasn't feeling so light-headed and weak.  My appetite returned.  I was finally allowed to take a shower.  I had been feeling a tightening pain in my chest for the last day or so.  That gradually disappeared.  I was finally free from my IV.  It was a good day.

The next day, my hemoglobin went down to 10.5.  I had been warned that this might happen, so I wasn't worried. I was discharged at about 6pm and made it to the polls just in time to vote.

The immunosuppressant Myfortic was deemed the culprit in all of this and was discontinued the day I was admitted.  It was replaced with Imuran, another immunosuppressive drug.

I've spent the last few days mostly convalescing and am feeling stronger each day.  I tried my exercise bike last night and its amazing the difference between then and the last time I tried it.  Its a strange feeling to know that this new reserve energy that I can actually feel is because of other peoples' blood.  I'm very thankful to them.

There are still some loose ends.  My kidneys are still under stress.  I'm still having a recurring low-grade fever.  Right now, I'm still overwhelmed by my current issues, but know that these things need to be addressed soon.  I won't feel completely better until these problems are solved.  They are both energy depleting.  But, one thing at a time.

Drug Transition Update 2012 #2

I'm still struggling with my drug transition issues.  Most of my lab results are better now.  My creatinine is down to 2.0 and my potassium is down to 5.5.  Both are still too high but at least going in the right direction.  My BGs are continuing to be mostly good.  The problem is that I still don't feel good.  My stomach problems are no better and I'm still running a low grade fever most evenings.  Both of these really wear me down.

My testing has all come back normal so far.  Negative for EBV and CMV.  Negative for C. diff.  My nephrologist sent me to an Infectious Disease doctor to try to determine the cause of the fever.  He ordered several tests but also said that the fever could be caused by the drugs.

I had a talk with my nephrologist who says that if my kidneys show much more distress that she will recommend that I go off or reduce the Prograf.  When I told Dr. Bellin about this, she discussed it with Dr. Hering.  The decided that before they would take me off of the Prograf, they would want a kidney biopsy to determine that the Prograf is definitely the cause of the kidney problems.

And, to determine that the Myfortic is indeed the cause of the GI problems, I'm scheduling a colonoscopy.  This can determine if there is colonitis and if it is caused by the Myfortic.

I'm not sure what will happen if the two immunosuppressant drugs that I'm taking are indeed the cause of my problems.  I've been on and beaten by all of the best drugs now.  I think that the reason for the dramatic pinpointing of my problems is that taking me off of them will be very risky to my islets.

The fever is another issue.  It occurs mostly in the evening and varies from about 99.3 to 99.6.  It really makes me feel sleepy.  I am seriously caught up on my sleep.

One interesting thing.  When I was discussing/complaining about the low potassium diet with my nephrologist, she told me that a high carb/high insulin diet will help with my potassium.  It seems that the insulin will somehow help to get the potassium into the cells and out of my bloodstream along with the glucose.  So I've increased my carbs and insulin and hope that this will do the trick too.  The surprising thing is that my BGs are still really good.  I'm eating macaroni and pancakes and bread like I haven't in years.  I was drawn today and am hoping to see some good numbers.

JDRF walk 2012

I'm also trying to get back into some exercising.  I've been trying to listen to my body and just rest, but I'm afraid my muscles are turning to mush.  I'm doing some very short walks and riding my exercise bike.

The picture is from this year's JDRF walk.  We raised over $900 and had a great time.

Stay Strong

The title is somewhat to my islets and some for me.  Things have been confusing and scary lately.

Last week, after my experiences with the pump and high blood sugars, I emailed Dr. Bellin about this problem.  She had me go back onto the Rapamune, increased the Prograf and ordered a C-peptide test to check on the health of my islets.

The very good news is that my C-peptide results showed that my islets are still functioning.  My fasting C-peptide was 0.87 and stimulated C-peptide was 1.49.  This compares to the values from July which were 0.14 and 1.59.

So, that leaves the decision as to what to do about the stress to my kidneys.  Now, I'm back on full strength of all three immunosuppressants.  And about the time that I went back on the Rapamune, I developed some severe stomach problems.  I am also running an occasional low grade fever for no apparent reason.  Between those two things, I am feeling very run down.

My BGs have been getting better.  I'm not back where I was, but am getting closer to that.  I'm increasing my basal rates untilI get them to where I need to be.

I saw my nephrologist yesterday.  This appt was moved ahead in response to my elevated creatinine levels.  I had done my pre-visit testing and those results were about the same as before with my creatinine still at 2.0.  After I told the doctor about my drug transition, she wanted to see how my creatinine was at the moment and ordered some testing to be done during my visit.   That creatinine was 2.5.  And my BUN was elevated as well.  Both are kidney function tests.  She decided to take me off of several of the drugs that I was currently taking.  The lisinopril and lasix would be replaced by a different blood pressure medicine.  Most of my over the counter supplements are on hold and I'm to take one more potassium lowering treatment and then be done with that.  She seemed alarmed by these results which worried me.  Until this point, she didn't seem overly concerned by my creatinine levels.

I am to have my creatinine and kidney function tests rechecked tomorrow and again on Monday and then I see her again on Thursday.  I'm also being tested for CMV and EBV because of my fever and fatigue.

I had the nephrologist fax these results to Dr. Bellin.  She decided to again start to wean me off of the Rapamune.  When I hold my nephrologist about this plan initially, she was surprised.  She believes that its the Prograf that is stressing my kidneys.  When I relayed this to Dr. Bellin, she agreed, but said that the Prograff/Rapamune combo was worse than the Prograf/Myfortic combo and was worth a try because taking me off of Prograff was extremely risky for my islets.  She says it might still come to that, but is worth trying this way first.

So, I am again waiting and hoping for this all to work out.  I feel better than I did last week knowing that I still have islets that are working.  I'm just hoping that this is going to be a rough chapter of my story.  I just need to stay strong.

Drug Transition Update 2012

I've been taking my new drug, Myfortic, for a week now and am beginning to tapir off the Rapamune. I'll be done with the Rapamune in a week.

I had my drug levels and monthly labs drawn on Monday.  The drug levels were all fine, but my creatinine has increased to 2.0.  Last month it was 1.7 and considered too high, so this is not good.  Dr. Bellin put me on a quick decrease of the Rapamune in hopes that this will help my kidneys and if not, I'll have to decrease the Progaf dosage as well.

To complicate (or help) matters, I started on an insulin pump this week.  My endo has wanted me to do this for awhile, but I never thought I took enough insulin to make it worth it.  I was ranging from 12-15units/day.  But, it seems to be the only route to my getting a continuous glucose monitor.  And, it will help to keep my blood sugars under the best control during this transition, so I relented.  I was hooked up on Tuesday.  After some really high (375!) numbers on that first day, I seem to be settling down.  I can't say that I am enjoying it it all.  Its physically such a bother and emotionally and symbolically feels like such a giant step backwards.  Only hindsight will tell if this was good timing or bad.

Things feel a little precarious now. I know that this drug transition is stressful to my islets, so I'm watching my BGs closely and being as aggressive as I can with the insulin to help them as much as possible.  That's all that I can really do.  I can't do much for my creatinine level.  Fortunately, no side effects from either the high creatinine or the Myfortic.  I still feel good.  I'm just trying to stay busy and hope for the best.

Senator has been a nice combo tool/ security blanket for me.  He can warn me if I am going high and patiently accepts all the hugs I can give him.

Changing Immunosuppressants again

Its been decided that its time to change my immunosuppressive drugs again.  My lab results have been indicating that my kidneys are becoming stressed by my current immunosuppressive regimen.  My creatinine is up to 1.8 and seems to be higher with each reading.

I could see this coming for awhile, but its still somewhat of a shock.  Other than worrying over lab results, I'm really not experiencing any symptoms.

To review, this will be my third switch.  I began with Rapamune and Raptiva.  Raptiva is the name of the clinical trial that I am participating in and was a new drug being tested for islet cell transplant recipients.  In hindsight, it was wonderful.  I took one injection once a week.  No pills at all.  And no side effects either.  Then, after about 9 months, Raptiva was taken off the market.  It was also used for psoriasis patients and some of those patients were having problems with it.  They were experiencing a certain type of brain infection and there were a few deaths.  It was decided to discontinue its use in the islet cell recipients at that point.

So, I was switched to Prograf and Cellcept.  Everything was fine for awhile.  My islets seemed to work well with this combo and everything seemed to be going smoothly.  Then, I started having some digestive issues.  I treated and fought with them for about 9 months, but ended up with colitis.  It seemed to be progressing from bad to worse, so it was decided to take me off of the Cellcept.

I switched from Cellcept back to Rapamune.  I've been on this Prograf/Rapamune combination for two years now.  Its been uneventful for the most part.  Very minimal and temporary symptoms.  But, my blood sugars increased which is when I began to need some insulin again.  And then the kidney function tests began to show signs of kidney stress.  It seems that every time I've been drawn lately, its triggered calls from my doctors.  I see a nephrologist who seems the least worried, but she seems comfortable with the words "dialysis" and "kidney transplant".

And now I'm switching the Rapamune for Myfortic.  Myfortic is similar to Cellcept, but is coated to help protect the digestive tract.  I'm hoping that I won't have those problems again.  I think I've reached the end of the road for tolerable immunosuppressive drugs.  I'm worried about how my islets will tolerate this change, but am hoping for the best.  I'm on day 3 of the new regimen now.  I'll be drawn next week to see if I'm in the therapeutic range for Myfortic and if so, will begin to decrease the Rapamune.

Lab results of islet cell transplant at 4 years

Here are the lab results at 4 years post transplant.

Chemistry tests.  All normal except:

Cholesterol is 235.  HDL is 78 which explains part of this higher number.
LDL is 140 which is also too high.

Sodium is ?
Potassium is ?
AST is 31.   Normal is 10-42

Urine tests.

Microalbumin is 0.8    Normal is less than 1.9
Creatinine is 1.7  Normal is 0.5-1.3  This has been a worry recently.
Glomerular Filtration Rate is 31    Normal is greater than 60.
This puts me into the bottom of Stage 3 Kidney disease.  Its based on the creatinine level which is elevated.

CBC.
WBC is 4.6 and absolute neutrophils is 3.5

A1c is 6.8 which is up from my previous 6.0 in April.  I'm blaming that on some vacations and some dog training.  The next one will be lower.  Normal is 4-6.

Before Breakfast:   BG is 91.   C-peptide is 0.14
After Boost:            BG is 285  C-peptide is 1.59

My blood pressure was 114/75 which is good for me lately.

The obvious concerns are my elevated creatinine and low GFR.  My kidneys are not putting up a good fight to the immunosuppression.  I might need to make a change.

I had an experience with the mixed meal test (boost).  I had the tests done at work, and after I was done went back to what I was doing.  I was performing a test that has requires a lot of manual dexterity.  Suddenly, my right thumb locked up in the closed position.  I couldn't get it to move.  I stood up and walked around and kept trying to open it with my left hand.  I finally did and then went back to work.  This happened several more times.  I walked away for awhile and then came back and sat down to finish the test.  My left thumb did the same thing.  It really freaked me out.  

I asked my endo about it at my visit which was the next day.  He said its called trigger finger and happens sometimes in diabetics.  So now I at least know what it is if it ever happens again.  I think the boost just caused my BG to go higher than it has in awhile.  Hopefully, that won't happen again.

Islet cell transplant at 4 years

Spring

July 21st marks the four year anniversary of my islet cell transplant.  Not as much fanfare this year because I won't be traveling to Minnesota for my check up.  I'm having it all done here this year.  I'll miss the trip and especially the people.

This year has been somewhat uneventful with regard to my health.  And thats a good thing.  I didn't suffer the spring cold season as I did last year.  The most significant thing I'm dealing with now is that I have to watch (and worry) over my kidney function tests.  My creatinine keeps on climbing.  I'm at 1.7 now.  My potassium level is the current focal point.  It has reached as high as 6.0 which is the lower limit of the danger zone.

Summer

Fortunately, none of this generates any symptoms.  Just calls from doctors who order more testing.

I still feel good. My energy level has stated the same.   My blood sugars are generally within range.  They have seemed more reactive lately.  It seems that if any little thing is off, they do increase.  This includes lack of sleep, stress, and maybe even excessive heat.  I've increased my Lantus to 10 units/day now and this seems to be helping.  On a good day, I still only take one unit of novolog/meal.

I'm struggling with a low potassium diet.  I have to learn to rationalize it and understand that I do have to eat some higher potassium foods sometimes.  Its hard to avoid dairy and still get enough calcium.  I've found some yogurt that is lower potassium and I barely wet my cereal with milk.  I've cut down, but will never give up peanut butter.  Or ketchup.

Fall

All in all, its been a good year.  Worrying about kidneys is much easier than experiencing highs and lows daily as a diabetic.  Training Senator even helps me to not feel so bad about the highs and lows that I do experience.  They are good training opportunities!

I'm having my labs done later this week and will post the results as I get them.

Winter

Here is a collage of the seasons in Minneapolis.  Its the product of my ritual walk along the Mississippi while I was there for my clinic visit.   Sigh......

Islets liking vacation

We just returned from a family vacation to Daytona Beach, Florida.  Except for some rainy days caused by tropical storm Debbie, it was wonderful.  Lots of good family time and of course, the beach.

We've been back almost a week now, and I'm shocked by the difference between my vacation BGs and my at home BGs.  They are remarkably better on vacation.  I've been thinking about this and trying to determine the differences.  The most obvious is that I can get more exercise throughout the day.  That's true, but I have been getting some good exercise at home too.  I'm sure that the stress level of vacation is less, but I'm not really stressed out at home either.  My diet is about the same.  I really don't have an answer.  It must just be the beach.  I'll have to work on that variable.

I'm still struggling with my high potassium level and low potassium diet.  I have my 4 year evaluation (here, not in Minneapolis :( )  Maybe the more extensive testing will have some answers.

Senator was really good in Daytona.  See other blog.

Nephrologist appointment

I've been struggling lately with my body chemistry issues.  It began over a year ago when my creatinine began to increase.  My baseline creatinine is about 0.7.  When it reached 1.0, it was considered a problem.  It rose and fell for several months, but has been on a steady increase more lately.  My creatinine level is checked monthly as part of the islet cell transplant trial and is the measurement used to assess kidney function.

My potassium seems to be back down to within normal limits.  I've been taking kaexolate weekly to help with this and it must be working.  I'm doing my best with the low potassium diet.  Its impossible to follow exactly and I've been erring on the side of my low carb diet.  That helps in the present.  The low fat, salt, and now potassium parts of my diet are a result of the immunosuppressants and I don't have as much control over them.  I've decided to concentrate on the battle that I can win.

I had some pre-appointmemt labs drawn about a week before my visit.  They consisted of kidney function blood and urine tests.  I got a sneak peak at the results when I received a call from Dr. G's (endo) office saying that my creatinine was up to 1.6 and that I should contact my nephrologist.  While I was in the office waiting for my appt, I also got a call from the SDI saying the same thing.  So, I was dreading hearing what she would have to say as I waited in her office.

The visit went well.  I was pleased to see that my weight was up to 107.  We went over all of my prescriptions which takes awhile.  My blood pressure was ok, about 135/85.  She asked if my ankles were still swelling.  I showed her and she didn't think they seemed to bad.  I asked her the same question that I asked Dr. G about whether I was going to reach a limit with my drugs and their effects on my kidneys.  She said she didn't see that happening any time in the near future.  That sounded promising.  Then she said that if/when that happens, I can just get a kidney transplant.  That was a real shock to me.  I said that I certainly don't want that.  I had always assumed that if things got too bad that I would just have to give up my islets.  She didn't think that would be the case.  She would rather see me get a new kidney and keep the islets healthy.  She said that IF that would happen, that it wouldn't be for awhile.  I left feeling good for the present, but concerned and confused about the future.

I thought about it for a few days, then decided to email Dr. Bellin to see what she thought about this.  She was more in line with what I had imagined.  She replied that possible options if my kidneys do get progressively worse would be to:
1. lower my dose of Tacrolimus and hope for the best
2. change from Tacrolimus to a different immunosuppressive drug.  But this usually results in loss of islets

She also said that she has seen patients who live with higher levels of creatinine without progressing to renal failure.  These options made me feel much better.  The thought of either dialysis or kidney transplant seem much too severe to consider as a possibility.  I'd rather hope that the next phase of the cure will not involve immunosuppression and that I'll still be healthy enough when that is a reality.

So, for now, summer is here and I'm going to enjoy every minute of it without worrying over all of these numbers.

Senator update
He is now alerting to both my high blood sugars and my low blood sugars.  See my other blog about him for the details.  It's been really exciting.

My training helper

The Moms of diabetes

I'll be combining two Diabetes Blog Week topics today.  Today's topic is "what they should know" about diabetes.  Sunday's topic is Diabetes Heros.  Moms of diabetic children fall easily into both categories.

Since my transplant and getting to know more diabetics, I have had the pleasure and opportunity to meet several of these moms.  I was diagnosed at age 24, so I don't have experience with this from my own Mom's perspective.  Its something that I never really thought about before.  It was a real shock when I discovered how a diagnosis of Type 1 diabetes can turn a family's life upside down.  Its hard enough to manage when you have your own biofeedback.  I can't imagine having to judge by behavior when a child's blood sugar must be out of whack.  It would be a constant 24/7 worry.  And a real worry.  The statistic that came out in November shocked the whole community.  1 in 20 Type 1 diabetics will die of low blood sugar.  This must have sent waves of shock through these moms.  They knew that this could happen, but at that rate?!  I have no doubt that that fueled the fires to wake up even more to test blood sugars of sleeping children.  I've heard people say that every morning when they go in to wake their child up that they are literally holding their breath, and hoping to find their child breathing.   I can't even imagine going through that each and every morning.  What heros they really are.

This has been most of my motivation in learning to train diabetes alert dogs.  I think that this could really make a difference.  Maybe more Moms (and dads) could get more sleep.  

Islet cell patch

The assignment for today in the third annual Diabetes Blog Week is to tell about your fantasy diabetes device.

Well, my device is only slightly mechanical, but should do the trick.  Its modeled after Sernova's islet cell pouch system, but takes it a bit further.  My device is a patch that is similar to a nicotine patch.  It is removable and discreet.  It is easily applied to any area of the skin.  It holds an incredible amount of islet cells (pig), that were created to be able to elude the body's immune system.  No immunosuppression is necessary.  Its only electronic function is to perform a weekly C-peptide.  When the C-peptide value decreases to a minimal value, the patch will be removed and replace with another.  Glucose monitoring would not be necessary because there would be no significant   fluctuations in blood sugar anyway.

They would come in various shapes and colors.

Mine would look something like this.  Maybe in green.

If you don't already follow Joshua Levy's blog, you should!

"You should" are words that I try to avoid saying in conversation, and would rarely put into print.  But for this I'll make an exception.



Its the third annual blog week that was created by Karen at Bitter~Sweet.  I plan on writing on a few of the topics.  The first topic is "Find a Friend".  The  assignment is to introduce a blogger that I read and would like more people to know about.

I didn't have to think long on this one.  I've been following Joshua Levy for a few years now.  In his blog, he is constantly scrutinizing the research for the cure of Type 1 diabetes.  He is the parent of a Type 1, so his motivation to do this is obvious.  He has a clear definition on what he considers to be the cure and keeps track of the clinical trials as they progress towards this goal.  He writes scientifically, but impartial.  He gets excited by the ones that are making progress and you can feel his disappointment when the results are negative or inconclusive and an avenue reaches its endpoint.  He writes a little over my head, which I like.  I always learn something.

He also gives credit to where the funding comes for these trials.  I made a poster for my JDRF walk which shows which trials are funded by the JDRF.  It got a lot of attention and served to encouraged people to want to donate more and educate some on what is happening in the research field.  Most people don't have specific knowledge of what is happening and how close we are.

Here is the link to his blog.  I hope that you will find the same inspiration here that I have here.  Many thanks to Joshua for the long hours that he must put into creating this very useful and insightful blog.

He also recently created a new blog about the many times that mice have been cured of Type 1 diabetes.  Also very interesting and must be a good way to air frustration with this seemingly false hope.

Brenda Novak's auction for diabetes research

Brenda Novak has a son with Type 1 diabetes.  Like most mothers of Type 1s, she finds his predicament to be intolerable and wants to do anything she can to help him to be free and healthy.  A few years ago, she created this  auction to raise funds that might one day provide a cure for her son and all who suffer from diabetes.

Here is a link to her auction.  It continues through May.
http://brendanovak.auctionanything.com/Home.taf

Welcome to Brenda Novak's Annual Online Auction for Diabetes Research. So far, we have raised over $1.3 million (cumulatively) — and hope to break $2 million in the near future. In order to make that happen, we are doing everything possible to set a new record this year.
The auction is NOW open and will run through May 31st. Don't miss the fun — this is such an easy way for us to join together to make a difference!

Endo visit with better labs and my incredible Golden

I saw my endocrinologist recently and feel much better about how things are going.  I've been worried about my recent rash of out of range lab results and was expecting to have a very serious and possibly discouraging visit with him this time.

The visit began well with my blood pressure at 170/80.  This is good considering that my lisinopril had been reduced since my previous visit.  My A1c was 6.0.  This is up from 5.8 three months ago, but is still quite good.  My C-peptide was 0.53 which is up slightly from the last visit.  Normal C-peptide is 0.9-6.9.  So I'm below normal, but still have some.  It still amazes me at how much a small amount can help make life so much easier.

Next we discussed the chemistry values that have had me so concerned.  The good news is that my potassium is down to 4.7.  Normal is 3.5-5.0, so I am back in range.  I was at 6.0 as of the last testing.  I've really been struggling with the low potassium diet, so I'm glad to see it back to normal.  Dr. G. agreed that it was probably a result of the lisinopril.  The bad news was that my creatinine was up to 1.6 which is the highest its been.  That prompted a call to the nephrologist.  She wasn't overly concerned and has ordered another draw to see if it will come down.

I asked Dr. G. if all of this was leading to  a brick wall where I was going to have to choose between my islets and my kidneys.  He said no, that he thought I would probably come back to normal.  I was surprised and very relieved to hear this.  He's more pessimistic than me (which is a good thing), so this has really put me at ease.

My cholesterol was at 226 with an LDL of 117.  So now I am taking 20mg of Lovastatin instead of 10mg/day.  My HDL was at 95 which probably accounts for most of the high cholesterol.


Senator has been progressing nicely with his DAD training.  He now alerts me to my lows which is really exciting.  I don't have too many of them, and they really aren't dangerous lows, so I can really enjoy the process.  I'm just now starting to introduce him to the high BG scent.  Hopefully, that will go just as smoothly.  The highs will really be of more use to me at this point.  The high BGs are stressful to my new islets.

Chemistry troubles

I had a great time at Government day last month, but I must have really worn myself out.  I guess I shouldn't have tried keeping up with my younger friends.  You know who your are Jenn.  My exhaustion seems to be the first in a set of dominoes since then.

It began with a headache.  I get headaches occasionally, especially when I'm tired, but this one seemed worse somehow.  I was feeling some kind of tension.  Something made me decide to test my blood pressure.  Sure enough, it was quite high.  I did it several times and it averaged about 195/90 which is really high for me or anyone. I went to the doctor the next day and she increased my lisinopril from 10 to 20mg/day.  By the following day, my headache was gone and I was feeling better.

A few days later, I noticed that I had a sore throat and felt tired.  I thought I must have caught something on the plane on the way back from DC.  I tried a throat culture, but it was negative.  After a few more days, I was feeling better, but still had the sore throat.

About a week later, it was time for my monthly labs to be drawn.  Each month, I have a CBC, creatinine, glucose and my drug levels tested.  The next day, I received a call at home from my endo telling me that my creatinine was up to 1.5.  The last draw had been 1.2 which was considered high.  He wanted me to contact my nephrologist and see what she thought about this.  She ordered more lab work to be drawn.  The results of this testing was that my creatinine was down to 1.3, but now my potassium is 5.9 which is really high.  This generated another call at home, this time from the nephrologist saying that I need to take a potassium lowering drug immediately.  So, I did that.  And, I'm supposed to be following a low potassium diet.  I googled that and about cried.  It runs extremely counter to my present diet which is low carb, low fat, low salt.  It seems that now there is finally nothing that I can eat without cheating on one of these diets.  Pretty frustrating.  I must have looked pretty sad, because these beautiful flowers appeared on my dining room table from my nice husband.  They helped.

And time for thinking things through has helped.  I still feel fine.  Other than this strange sore throat, I don't have any symptoms.  I'm being drawn again tomorrow and I'm hoping that my potassium will be on the downswing.  I'm also hoping that my nephrologist might revisit the increase in my lisinopril.  I'm guessing that that might be the real culprit with this last mess.

I've also had the very exciting and therapeutic experience of writing down my whole islet cell story to be featured in Diabetes Daily.  Its served to remind me of how lucky I really am.  I expected that there would be times like this and there has been, but they have all seemed temporary and/or treatable.

My blood sugars which always react to any stress on my body or life have come back to baseline.  So, things are all right now.

And, Senator and I have been making some real progress in his diabetes alert training!

JDRF Government Day - meetings on the Hill

After another delicious breakfast (they fed us well), it was time for the research update.  I had been looking forward to this session for obvious reasons and it was indeed very interesting. The research was divided into three sections.
These are the topics that are currently funded by the JDRF.

TREAT

• This included the use of faster insulins and glucose responsive insulin which would only be activated in the presence of glucose.
• The Artificial pancreas project which is the focus of the current Promise campaign.  The FDA has recently released a guidance that will help get it to approval.

PREVENT

• This includes the TEDDY study (The Environmental Determinants of Diabetes in the Young)
• Genetic and environmental triggers of diabetes are being isolated and studied.
• Trial net is the study that tests the family members of Type 1s to see if they possess antigens known to be associataed with diabetes.
• People who have just been diagnosed are treated with immunosuppression therapy in hopes of delaying the onset of severe Type 1 diabetes.

CURE

• Islet cell transplantation is currently funded by the SDP (90%).  It is hoped that FDA approval will help more patients have this option.
• Micro and macro-encapsulation of islet cells is the next step.
• Regeneration of beta cells is another direction.  Progenitor cells are a hope as is the reprogramming of alpha cells to become beta cells.

After lunch we boarded buses and headed for Washington DC.  Today we met with our state senators.  All of the people from Ohio attended.

Our first meeting was in the office of Sherrod Brown(D).  We met with one of his aides who seemed very interested in what we had to say.  It was very similar to a Promise meeting.  We all told our personal stories and then made sure that we asked for the support with specific items.  We asked each legislator to sign a letter of support for the Special Diabetes Program, to support the artificial pancreas project, to vote for financial support of the NIH and the FDA, and to join the diabetes caucus.  It was emotional hearing and telling our stories.  And the JDRF had us very well prepared with our talking points and our literature.  I felt that this meeting went very well.

Our next meeting was in the office of Rob Portman(R).  Again, we met with an aide.  She was polite, but not as interested.  When we asked for financial support she said that it is the Senator's policy not to support one disease over the others.  "It is too much like playing God".  That's hard to argue against and we could tell it wouldn't get us far.

We took a bus back to the hotel and arrived just in time to get ready for dinner.  We were served a nice dinner and enjoyed a nice program afterwards.  Jeffrey Brewer, president and CEO of the JDRF was the speaker and he gave a nice and encouraging talk.  Various awards were presented to some of the advocates.  I didn't know them, but judging by the smiling applause, they were deserving.  It was a very nice evening.

Tuesday morning, we had breakfast, packed up, and again headed for Washington DC.  Today we would be visiting with our Representatives.  We were able to meet with Rep. Latta(R) in person.  He was as friendly and interested as he was in our Promise meeting last fall.  For Reps. Kaptur(D) and Jordan(R), we met with their aides. Both were eager to hear our stories and were attentive as to what we were asking.  Rep. Kaptur had already performed all of the things that we were asking, so it was just a nice time to visit and talk about the importance of our mission with her aide.

After my meetings, I walked around for awhile just taking in the sights and then suddenly it was time to get to the airport and come back home.  The trip was pleasant and I enjoyed just sitting quietly and walking around the airport thinking back on the previous four days of adventure.  I met so many interesting people that I hope to remain in contact with and learned so much about advocacy.

JDRF Government Day - training days

I just returned from Government Day in Washington DC.  It consisted of four days, two days of training and two days of meeting with legislators.  It was full of fun, inspiration, socializing with interesting people, the excitement of meeting with people who can make a difference.

Saturday

Arlington cemetery

I left early in the morning and arrived at the hotel in DC at about noon.  I checked into both the hotel and the conference right away.  There were lots of people there, but none that I knew.  I had a one on one meeting with Jill G., who is the regional co chair of the Promise campaign.  We had emailed and spoken on the phone numerous times, but had never actually met.  She was very nice and got me off to a good start.  She also helped me meet some others advocates from Ohio who I would be spending some time with during the conference.  While I was sitting in the lobby reading over the handouts I had received, Hasan Shaw, the JDRF grassroots advocacy manager asked if he could do a video with me for the website.  He was looking for someone who was here for their first time and I was available.  Here it is.  I also slipped away for a walk around the hotel. It turns out we were very  near Arlington cemetery.


The Ohio people all went out for dinner together.  We took a bus into the city and had a nice dinner at an Italian restaurant.  It was fun getting to know each other and sharing our stories.  Afterwards, we went to the hotel bar and met some of the other people.  Everyone was so interesting and of course, we all had a lot in common.

Sunday
Breakfast was at 7:30, so it was a short night.  I got some breakfast and coffee and carried it into a big meeting room.  I didn't see any familiar faces, so sat next to the person that I had walked in with.  It turned out to be Karen from Bitter~Sweet blog, one of the very people who I was hoping to meet.  We had a nice time talking about our blogging experience.  She is just as nice in person as she seems on her blog.  


Then came the introductions.  Each person introduced themselves and told their own diabetes stories.  Each story was unique and interesting.  There were several families that had two diabetic children, and one with three.  Probably the one that got to me the most was a mother who says that she holds her breath each morning when she goes in to wake up her son.  She always begins the day by checking that he is breathing.  All of the parents spoke of setting alarms to check blood sugars multiple times each night. Several of the type 1s have been diabetic for many, many years.  But in all of the stories, no one was really complaining or asking for sympathy, just telling the specifics.  Very typical and illustrates one of the reasons that most people don't know a lot about the more difficult challenges of living with diabetes.


Next came the information that we needed to prepare for our visits to the legislators on "the hill".  We talked of our goals and some of the issues that we would be explaining to our congress people as well as what we would be asking of them.  We would be asking for renewed funding for the Special Diabetes Program.  This is a program that funds research funding through the NIH for projects involved with things like genetics, environmental triggers, complications, glucose control, and several other issues (like my transplant!).  We also talked about the artificial pancreas project and asking for funding for the NIH and the FDA.  We would also be asking each legislator to please join the diabetes caucus.


An update on the Promise campaign was encouraging.  We are getting close to our goal of 432 meetings.  I have my last one on Tuesday.

We were then given the choice of which sessions we would like to attend.  I chose one on building leadership and one on what to expect at our meetings with congress.  Both were very helpful.

All of the Ohio people then went out for dinner.  We ate at Chef Geoffs and had a great time together.  Afterwards, we walked around the area and ended at the White House.  It was a fun evening.

Preparing for JDRF Government Day

I love it when my online world and my real world collide.  It really has this time.  I am being allowed the opportunity to go to Washington DC to advocate for funding for the cure of diabetes on behalf of the JDRF.  What an exciting way to do something so important for a cause that I believe in so strongly.

In the meantime, I have a lot to learn.  The goal of Government Day is to meet with and convince our legislators to vote for issues that will fund research for diabetes.  I am assigned three local Representatives.  They are the same three that I have either had or are in the process of scheduling Promise meetings with.  Currently I have one meeting with Rep. Jordan set up, a meeting with an assistant of Rep. Kaptur and am waiting to hear back from Rep. Latta's office.  I'm learning a lot about the art of scheduling.

I did an on line training session to help prepare me for what to do when we all get there.  The logistics of getting around with no car will be different.  I'm planning on doing as much walking as I can.

My blood sugars have been quite good lately.  I attribute it in part to having two dogs to walk and care for.  We now have a second dog, Cruise that Gary is fostering and training to become a service dog.  Its a lot of work, but fun to watch the dogs interact, and good exercise for me.  Gary is also participating in the training classes so that we can help each other with both dogs.  Senator is doing well with his training to become diabetes alert dog.  I've created a second blog to document my progress with him here.

Type 1 Diabetes Reversed With Stem Cells From Cord Blood

Type 1 Diabetes Reversed With Stem Cells From Cord Blood

This study has me really excited.  It is a study involving the re-education of immune cells by introducing cord blood stem cells to a sample of the patient's blood.  This is done outside of the patient's body and the "smart" blood is returned.  The goal is for the immune system to stop attacking the beta cells and for the patient to begin making some insulin.

The study compared patients who make no insulin, patients who were still making some insulin and a third placebo group that did not receive the cord blood stem cells.

The results were that the patients who received the treatment had a decrease in A1c and insulin requirements and an increased C-peptide. Thats both groups, the patients with some or no beta cell function to begin and those with some beta cell function.

The placebo group showed no change in any of these measurements.

This is really nice.  The C-peptide is the exciting part.  Insulin and A1c can be manipulated with more aggressive diet and exercise, but not the C-peptide.  That shows an intrinsic change.  It shows that this works.

Its also interesting to me because the group with no beta cell function was brought to about the same C-peptide value that I currently have which is about 0.5.  This is much lower than I was at about a year post transplant.  I was usually over 1.0.  But, physically it is a giant step away from 0 C-peptide which is where I was pre-transplant.  I still feel just as good, I just have to take a few shots.  I must be healthier.

I'll be following this study closely.  They are hoping to start clinical trials on this soon in Japan.

As for me, I had good news at my endo appt. last week.  My A1c is down to 5.8.  This is fantastic.  My previous one was 6.5.  I was hoping to just be lower than that, so this is a pleasant surprise.  As I mentioned above, its probably due to my very aggressive diet, exercise and insulin use, but thats ok.  High BGs are toxic to my precious islets, so I try to avoid them.  I'm really hoping to stay where I am for as long as I can.  Or until the next best thing comes along like this study.



We just got back from a trip to California for a belated White Christmas.  We had a great time.

Diabetes and Microbiology and dogs

After getting all excited about combining diabetes and dogs, now I see that diabetes has found a connection with microbiology.  This article came out today in DiabetesCare.net.  A group of students at the University of Missouri found that they could measure blood sugar using bacteria that have an ability to glow in the presence of glucose.  They found that the amount of glucose was in direct proportion to the amount of glow created by the bacteria.  They are hoping that this might be used in test strips in the future.  Bacteria are already used for their ability to create drugs and other useful chemicals.  They are cheap, numerous and there is no moral issues with their use (that I am aware of). I'll be following this research.

In other news, Senator, the dog I was fostering for the Assistance Dogs of America, Inc.  was diagnosed with hip dysplasia.  So, I am going to try to train him to become a Diabetes Alert Dog.  I really like the idea of giving him this second chance.  It makes us two of a kind.

I'm in the process of creating another blog to keep track of his training.