BK Virus update and Symlin

I'm still fighting this virus.  For the last few months, the levels have been fluctuating between gone and low levels.  Since the goal is to have it be gone, we're not quite done with it yet.  Here are the recent test results.

Date            Serum BK                                     Urine BK                                       Creatinine
5/10/13     Detectable, not quantifiable                 4.1                                             
5/23/13     Detectable, not quantifiable                 3.4                                               1.6

My 1.6 creatinine is the lowest its been in a long time.  That is a very good sign of better kidney health and I'm thrilled to see it.  My potassium was down to 4.1 which is also the lowest its been in a long time.  I no longer have to take kaexolate every week to keep it down.

The next step is to have another kidney biopsy to determine if the virus is still causing active inflammation in my kidneys.  If it is, then I will probably have to stop my immunosuppression altogether.  I'm only taking 1.5mg/day now which is almost nothing.  Since my islets seem to be functioning well, its worth having the biopsy first.  

My recent A1c was disappointingly and surprisingly high.  The previous result was 5.9.  It went from there to 6.9 and then down to 6.5.  I really expected it to be lower than the 5.9.  My BGs were very very good.  

The only clink in the amour seemed to be right after breakfast.  This is the most common time of the day to be the weak point and it always has been for me.  My 2 hour post-prandials were ok, but Senator had been alerting me before that time.  When I would check to verify that he was right, I would commonly find myself in the 200s.  I didn't worry too much about it because I knew that I would be down soon.  The few times I covered for it, I had a low before lunch.  I thought it was just a good training opportunity for Senator.

But, the higher A1c has made me look at this differently.  At my appt with my endo, I mentioned this and we decided to put me on Symlin.  Symlin is supposed to cover those peaks in BGs.  I tried to bargain the starting of symlin for going off my pump, but no such luck. I'm doing both.  Dr. Gundabolu is very conservative with my islets and I can't fault or argue with him for that.

So far, the symlin doesn't seem to be helping much.  I started with the lowest dose.  15mcg/day.  When I was still having the highs, I started adding the insulin back in and I am almost back to where I was.  I'll be calling in my BGs soon and will expect an increase in symlin.


I hope to be spending many a warm sunny day in a kayak.  Here is the first of the season.

Turn the Page

I saw Bob Seger over the weekend, and he was fantastic!  He has always been my favorite and seeing him perform in person is really a thrill.

The title happens to be my favorite song of his and its how I feel about what is going on with my health story these days.  I feel like I am constantly waiting to turn the page to see what happens next.

I'm having tests for the presence of the BK virus weekly for awhile.  It seems to be going in the right direction.

           Serum BK            Urine BK      Creatinine
2/15     undetected             5.2                 1.8

2/22     less than 2.6          4.5                 1.8

3/1                                   4.2                1.9

I'm concerned that my creatinine has increased, but haven't heard that I need to decrease my immunosuppression.


I also had my C-peptide tested.  My blood sugars have been surprisingly good and both doctors ordered C-peptide to check on my islet function.  They have showed an increase.


                             Fasting                  Post-prandial
July                       0.14                       1.59

September              0.87                       1.49

March                    0.37                       2.17

normal C-peptide is 0.9 to 6.9

This is an interesting reflexion of what I am seeing on my pump statistics.  I still need some basal insulin to keep me from going too high.  But, I need much less bolus insulin.  I'm getting some help from my islets in controlling the increase seen after I eat.  I'm using about 9.5 units of insulin/day now.  83% is basal and 17% is from boluses.

Treating the BK virus as an outpatient

I received this during my hospital stay.

I was released from the hospital on Friday after my third treatment with the antiviral, Cidofovir.  I was tolerating it well and it was decided that I could continue with my treatment as an outpatient. That was fine by me.  So, I had the weekend "off", and started my treatments on Monday morning.  The day before Christmas.

The treatments were the same as in the hospital.  I take the Probenecid before I leave, the saline IV is started when I get there, followed by the Cidofovir, and then more saline IV.  I take the final two doses of Probenecid afterward.  I'm still getting a few side effects, but they aren't too severe.  I get a headache that is helped significantly by tylenol, and I feel tired.

My lab values remained quite stable throughout this.

                        Mon                Wed               Fri                  Mon             Wed          Fri
creatinine         1.62                 1.79              1.67                1.78              1.79           1.70
BUN                 51                    49                 45                   52                 52             45

My Potassium is down to 4.5 which is very good.  I'm hoping to not have to take the kaexolate for that soon.  My BGs are remaining good.

Unfortunately my viral titer numbers aren't so good.  When I was diagnosed with the BK virus, it was at 5.54.  I was drawn after two Cidofovir treatments and it wasn't much lower.  I was drawn again on Friday, and found out this Monday that that level is 5.03.  Not a significant difference.  Since it was New Year's Eve day, I had a hard time getting hold of a doctor that knew anything about this treatment.  I was feeling that I should not be having this treatment that is so stressful to my kidneys if it wasn't working.  But, I'm not the one who makes that call.  I finally got a doctor with the help of a very responsible and caring nurse who knew about my case.  My doctor was on vacation, and according to his office staff, completely unreachable.  It was a frustrating day.  The doctor that I spoke with said that I should continue with the treatment on Wednesday, and he would discuss it with my doctor in the meantime to decide what to do next.  He said that the viral titer still could drop off quickly.  He also said that the next treatment option would be to give me immunoglobulin treatment.  I'll have to google that to see what it entails. My nice nurse told me that its another IV treatment, but not as intensive as for the Cidofovir.

No New Year's dip in the river for me this year. With my picc line in, I'm not watertight.  Gary braved the cold though, and it was still a fun day.

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.

Labs and a Golden

I seem to be on some tangent with my electrolytes lately.  Its a little beyond my knowledge, but I'll post the numbers now and either the interpretation or the effects at a later date.

It began in January with a spike in my creatinine to 1.01 which led to a followup.
The followup showed that the creatinine had decreased back to 0.7 which is normal for me.

My creatinine increased to 1.0 again at my routine labs drawing in April.
The followup showed that it had decreased again to 0.8.
But, my sodium was low at 129.  normal is 134-147      
   In January, it was 133 when I was tested in Minnesota.
And my BUN was a little high at 22.  normal is 10-20

This led to additional testing last week.
Creatinine was steady at 0.8.
Sodium a little higher at 131.
BUN a little higher at 25.

The testing beyond this was all normal.
Liver enzymes, Albumin, TSH, ADH, Cortisol, Aldosterone.
These were checking on other organs and cell processes to probe the sodium problem

I haven't heard from my endo about these last results.  I am assuming that no news means he is not worried.  And the same from Minneapolis.  Renae said Dr. Bellin has seen these and is also not worried.
So, neither will I.  For now, it is something to keep an eye on.  Most importantly, I feel fine.  I might be a little hypochondriacal, but my ankles seemed a little swollen at times and I have seemed thirstier lately.  Maybe these will subside now that I know everything is ok.  I'm thinking they will.

During one of these draws, I had my C-peptide checked.  I was nervous about having this done because I assume that I am on the decrease.  It was down to 0.38.  In January, it was 0.66.  To be honest, I was a little relieved to see that it was still able to be detected.  The interesting part is that the decrease does not reflect my BGs or insulin use.  I have had very good numbers lately.  My last A1c was 6.6 which is a little higher.  That wasn't a surprise because of all the colds I have had in the last 3 months.  I think I will be lower at my next check in July.  And my insulin dose is back to 8 or 9 units/day which is where I was before all those colds.



Dolly has been progressing.  She has the commands that she needs to know at this stage down well.  She is still behind on the social issues.  Still overly excited by people and very submissive to dogs other than Callie.  She is growing like crazy and beginning to look more like a dog than a puppy.  She will have one more outing with her trainer next week and then she will get her vest and I can begin to take her to some public places.  In the meantime, it was suggested that I walk her around the outside of some buildings to get her used to shopping carts and strange faces.

The scare is over

I saw my endo on Monday and learned that my creatinine level was back down to 0.7.  Since the transplant, I had been running in the 0.6-0.8 range, so I am back to normal.  I am SO relieved.  This is the worst scare that I have had yet.  The CMV bouts were worrisome, especially the second time.  But, I knew it could be controlled with Valcyte, an antiviral drug.  This high creatinine combined with my higher blood pressure had me worried about my kidneys.  My worst fear was that I might have to decide between my new islets and my kidneys.  And of course, there is no decision there.

With some hindsight, I think this might have occurred while my Prograf level was increased.  At my monthly check on my drug levels, the Prograf level came out really low.  My dosage was increased in response to this and my level was rechecked.  It was above range, so my dosage was decreased almost to where it was before.  Then, about a week later, I noticed that I was really tired and felt almost sick.  I was also having some leg cramps at night.  Both of those got better within about 3 weeks and I forgot about them.  While I was fretting over the creatinine and BP numbers, I was googling kidney function.  I found both the fatigue and the leg cramps as symptoms of kidney stress.  So, I'm guessing that my high creatinine was due to the temporary increase in Prograf and it was caught on its way back down to normal at my Minneapolis visit.

So, with the kidney scare over, just the high blood pressure had to be addressed.  Since I can't lose weight or increase exercise more, the answer is in the form of one more tiny little pill.  I'm now taking Lisinopril to keep my BP under control.  My BP was about 150/80 at my appt, so no argument from me.  I had been trying to lower my salt intake and drink more water, but that didn't seem to help.  I asked if it was most likely due to the immunosuppresive drugs and was therefore a losing battle, and my Dr. said yes.  It shows how perspective can change.  At my last visit, when the increased BP was discovered, I was nowhere near ready to give up and add another prescription to my arsenal.  Now, it seems like a relief to have an easy fix to what I believed to be a complex and scary situation.

The good news also made for another cheery visit to my endo.  We really seem to click and I enjoy my visits.  I was dreading a sad conversation and ended up on a very happy note.  My A1c was at 6.2.  It was 7.1 at my last visit which was when I began the insulin.  We were both pleased by that.

It still amazes me how effective a small dose of insulin can be.  I am taking 6 units of Lantus/day and 1 unit of Novolog before breakfast and lunch.  I do my exercising after dinner these days and that allows me to skip the Novolog dose before dinner.  I have been experimenting with trying to exercise between lunch and dinner.  But when I skip the Novolog there, I end up with a higher number.  Maybe when the weather changes and I can be out more, I'll try again.


This is the only flower I have at the moment.  Its actually last year's Poinsettia.  The white background is what it looks like out my window today.  I'm ready to see some more GREEN.