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.