A1c test to celebrate

Happy surprises occur every once in a while. One happened to me Tuesday when I received my most recent HgAq1c or HbA1c reading from endocrinologist, Dr. Vijay Bahl of UUPMC Shadyside.

It was 5.5 percent. I was expecting a 6 percent or higher

Normal generally is 4 to 6 percent, so 5.5 percent is smack in the normal range. It maintains my run of 15 years of remaining in the normal range, with my highest reading of  6 percent occurring iin the fall of 2008. Butt I have excuses for that reading.

This time, I thought it would be high due to surprising fluctuations that were hard to control over the holidays. Without reason, my readings would climb above 200 mg/dL. Understand that the A1c  records an overall blood-glucose reading for two to three months.  

Happy result, for sure.

Such results require dutiful testing of blood sugar. I test 15 to 20 times daily. It might sound excessive, but I have the results to show its value.

Next time -- my next appointment is May --I expect my A1c to drop closer to 5. Typically it is about 5.3.  My lowest was 4.8, but Dr. Bahl said that's too low. It leaves me too vulnerable to hypoglycemia, or low blood sugar episodes, which can cause unconsciousness and, if left untreated, death. So the low 5's are fine with me.

But now I must go.

Tiime to test my blood sugar..

.

Anemia and other observations

I had a busy, busy week. I had appointments with my nephrologist and endocrinologist and had bloodwork done at the Thomas E. Starzl Transplantation Center, all on Wednesday.

And, for now, all is well, save for a few minor concerns.

My bloodwork prior to my appointment with Dr. Cynthia West, my nephrologist, showed a potassium level slightly elevated above the normal range, but that's likely due to having eaten too much soup in recent weeks and too much tomato sauce.

Bad Dave.

But my phosphorous levels were within the normal range, as were my numbers regarding my parathyroid levels, which I have kept under control by taking 5,000 IUs of vitamin D rather than take a prescription of synthetic vitamin D known as Zemplar.

Dr. West said I'm doing fine.  My numbers are stable.  My creatnine levels rose from 3.3. to 3.8, which means I have 17 percent kidney function at this point, but that rise equals about what it was in two previous tests.

There is one problem, though.

I now am mildly anemic. I've felt a bit rundown, and now I know why. Previously I had been on the edge of anemia, but now my iron levels have dipped. As a result, I'm now taking iron to build up iron levels in the bone marrow. I'll take iron for a few weeks, or longer, and suffer either the diarrhea or the constipation that it causes. But there are remedies for those. Getting the iron levels re-established will be something I look forward to accomplishing.

I barely beat my Jan. 20 deadline to get bloodwork done to remain current for my transplant status, but I beat the deadline by at least an hour. Then my endocrinologist, Dr. Vijay Bahl at Shadyside Hospital, gave me a good pep talk by noting that my creatnine level in the past 15 years has declined only slightly, which means I should be able to maintain enough kidney function for the next four years without dialysis until the kidney and pancreas transplants take place.

I must avoid dehydration or episodes of low blood sugar, both of which can kill off kidney function.

That's my goal, to maintain kidney function until Transplant Day.

But I'm expecting a less than perfect HgA1c level this time. I've had a miserable month of fluctuating blood-sugar levels, caused in part, I believe, by a lingering but not serious virus I had over the holidays. I'm fearing an A1c of over 6, which would be the highest in more than 15 years. We'll see.

I'll  publish the results early next week when the results come in.

I scheduled an April 13 appointment with Dr. Ronald Benoit, my urologist, for a prostate exam to remain current with transplant requirements.

I've been on the transplant ,list now for 55 days. Time flies.

This transplant routine requires some work. But all my tests are done for the month. Now I need to increase my exercise, keep my sugar levels under control and heal my anemia.

Plenty to do. But facing a four-year wait, there's plenty of time to do it.

Interesting Success Rates

The United Network for Organ Sharing offers interesting success and survival rates of interest to those of us awaiting trransplants. 

UPMC's numbers are on par with national averages. While the numbers fall a bit short of perfection, they certainly left me with confidence of success.

Regarding kidney transplants done at UPMC's Thomas E. Starzl Transplantation Center from July 2006 through 2008, slightly more than 91 percent of all kidney transplants were still functional after one year. That's  about 1.5 percent below the national average of 92.62 percent.  The patient survival rate, based on 368 kidney transplants, was about 95 percent, with an expected national rate of 96.5 percent.

UPMC''s kidney-transplant success and patient survival rates represent no difference from national averages from a statistical standpoint, according to UNOS.. 

Regarding 16 kidney-transplants done at UPMC, 100 percent of the kidneys still were functioning after one year, which indicates a 100 percent patient survival rate.  But only about 80 percent of the pancreas transplants still were functioning after one year. The success rate of the kidney part of the transplant, at 100 percent, was higher than the national average of 94 percent, but the rate of pancreas success at about 80 percent did not quite match the national success rate of 85.5 percent.

Certified idiot

I'm an idiot.

I should be issued a certificate to confirm it.

Now I always do stupid things, usually daily. On days when I haven't done anything stupid, I figure something must be wrong. I check my pulse. But it's rare when I do things this ridiculously stupid.

It happened yesterday. After walking our dog, Nutmeg, in the mornning, I grabbed my breakfast bag with whole-grain toast and organic peanut butter along with juices and things designed to keep my blood-sugar levels even throughout the day, jumped into the car and went cruising to work. Once I parked on the North Side and walked the bridge to downtown and settled in at my desk, my first chore after starting up my computer was to test my blood sugar. I opened my duffel bag and discovered that my OneTouch kit was not there. In fact my shoulder bag in which I keep my kit and diabetes supplies, including my cell phone, was absent.

Shock coursed through my bones.

I headed back to the North Side to see if I'd left it in the car.

Not there. Another shock wave sparked through spine and brain. I couldn't believe my stupidity.

I had an 11:30 a.m. interview that required a walk from the Point to Grant Street -- a considerable walk. I loaded my coat pocket with glucose tablets and ate them during the walk to make sure I didn't get shaky prior to or during the interview at the City County Building. I survived the interview without incident, although I could sense that my blood sugar was on the low side.

On the way back to the office, I stopped at a few drug stores to see if there were any cheap machines I could purchase, along with test strips, to get me through the day. But the cheapest I could get would have been about $60, and still I had no insulin (also kept in my shoulder bag) if my sugar climbed too high.

Understand, I test at least once an hour and sometimes more often when my schedule goes whacky or my exercise or activity level increases, as was occurring yesterday. I test 20 times a day. I've been doing this for years, so when I am separated from my test kit, I feel empty, lonely, anxious, despairing, clueless and vulnerable. You can add other adjectives like this and all would fit. Also add the words "dumb" and "stupid" to the list.

Back at the office about 12:45 p.m. and yet to eat lunch, I decided I'd head home near McDonald to get my test kit then head back to work at the Southpointe office to put in a full day. And that's what I did. 

I surprised Nutmeg when I walked into the kitchen earlier than she anticipated and noticed she had been up on her hind legs and knocking over things on the kitchen counter in search of human goodies. She's expert at food thievery. She's eaten loaves of bread, a nutroll, peanut butter sandwiches, boxes of cookies and who-knows-what-else. On this occasion, I discovered the fruit bowl knocked over, a box of tea on the floor that she had been fully involved with and a yellow squash-like melon rolling about on the kitchen counter.

And there behind said melon was my trusty test kit. Hallelujuah!

I tested immediately and my sugar level was a rather low 68.  I was beginning to feel the effects of low blood sugar, including weakness, a bit of depression and a hollow feeling in the pit of my stomach. I grabbed my shoulder bag with my test kit, then got a quick lunch to go, then headed to the office.

And adding to the ridiculousness of this episode, during the ride back to work, I found myself stroking my shoulder bag on the seat beside me as though it were some trusty pet -- my own version of Lassie, that served as a friend, companiion and lifesaver.

Artificial Pancreas?

 There have been rumblings about this for years -- no, for decades -- that eventually someone would  develop an artificial pancreas to treat type 1 diabetes. Such a device would read blood sugar levels then issue insulin in doses to bring it back into or close to the normal range without the person taking any action. Let the machine do the difficult work.

Nowadays in this technology-overloaded universe, it doesn't seem that such a device should be that difficult to produce. 

But now the Juvenile Diabetes Research Foundation has announced a partnership with Animas Corp., a division of Johnson & Johnson, to develop an automated system to hlep people with type 1 diabetes to control their blood-sugar levels. It represents a first step on the path to what the JDRF describes as "among the most revolutionary advancements in treating type 1 diabetes.

Indeed, an artificial pancreas.

This report got my attention.

Animas produces insulin delivery systems and the JDRF is a global leader in diabetes research. Their partnership is known as the JDRF Artificial Pancrease Project. The contraption it develops with the use of a DexCom continous glucose monitor, or CGM, will have to be tested extensively before receiving approval through the U.S. Food and Drug Administration. That process could take four years.

JDRF will provide $8 million toward the project over the next three years. In essence, the devicie would combine an insulin pump with a CGMi. Both already are aviailable. All that's required is to come up with a compuiter program or algorith that would allow insulin to be delivered in reaction to elevated blood-glucose readings from the CGM, or discontinued if blood sugar drop to a certain level. The device would be worn by the user with patches under the skin to read blood-sugar levels and deliver insulin.

The user still would manually instruct the pump to deliver insulin at certain times, prior to meals, for example. But the device would be designed to prevent high or low blood-glucose readings around the clock, and take action in more timely fashion to keep readings in or close to the normal range.

I applaud the effort, but wish it would have happened years ago. The insulin pump has been in existence since the mid-1980s and the CGM has been in existence for many years now. Why someone hasnj't programmed them to work together has been a mystery to me, especially considering the sophistications of robotic technology that's been available for years. Carnegie Mellon University has developed an automobile to drive safely on its own through cityscape, so you'd think someone could faiirly easily develop a program to keep blood sugar levels in a normal range.

I'm not complaining, though.

I'm happy the JDRF and Animias are working to develop an artificial pancreas. Let's hope it happens.

Book of Interest

A new book suggests that the incidence of type 1 diabetes is now increasing at a rate of 3 percent per year, putting it on par with the rise of type 2. That issue put forth in the book, "Diabetes Rising: How A Rare Disease Became A Modern Pandemic, And What To Do About It." by Dan Hurley, raises questions that perhaps everyone with type 1 desires to understand. 

What is the cause of type 1?

Mr. Hurley's book states that the incidence of type 1 is now twice as high among children as it was in the 1980s and 10 to 20 times more common than 100 years ago, based on peer-reviewe research he used to write the new book from Kaplan Publishing. 

We people with type 1 long have suspected genetics, possibly triggered by infection, environmental exposure or something else that occurs in lthe course of liife. That's to say, the cause remains one big mystery, although I always felt there was a genetic link, considering that my sister, Beth, also has type 1 diabetes.

We both developed it about the time of puberty.

Here are the theories that Mr. Hurley puts forth for your consideration.

1. The "accelerator hypothesis" that asserts that the rising weight and height of children over the past century has has accelerated the tendcy to develop type 1 by putting one's insulin producing beta cells under added stress.

2/ The "sunshine hypothesis" that holds that increased time spent indoors reduced children's exposure to sunlight, reducing levels of vitamin D, and increasing the risk of type 1.

3. The "hygience hypothesis" which holds that lack of exposure to once-prevalent pathogens results in autoimmune hypersensitivity, leading to destruction of the body's insulin-producing beta cells by rogue white blood cells.

4. The "cow's milk hypothesis," which holds that exposure to cow's milk in infnt formula during the first six months of life wreaks havoc on the Immune system and increases the risk of later devellopment of type 1.

5. The "POP hypothesis," which holds that exposure to persistent organic pollutants increases the risk of both types of diabetes.

 So what are we to think of these theories. Well, I havle my doubts about a few of them, based on my own childhood. I spent six months a years in the sun, and the onset of my type 1 occurred after a vacation to Virginia Beach in 1966 after being badly sunburned.

I also spent consierable time in public shool and with every snot-nosed friend. I had all the childhood disease, measles and mumps includes. When one friend got sick, we all got sick. So I don't think I lacked exposure to germs. I was not overweight, so I doubt that my size put pressure on my beta cells.

I was allergic to milk as a kid, but my mother put me on soy milk. I also spent considerable time in my father's feedmill for the two summers prior to being diagnosed, which had lots of dust, fertilizers, lime and other things that could have exposed me to enough pollutants to bring on diabetes. But then how does one explain my sister's diagnosis when she never went into the feed mill.

So none of the theories necessary convince me, and I think it might be a combination of a number of things that bring on type 1.

 It would be interesting if they did figure out what causes type 1.  I still think it had to do with a virus that triggers it in people who already are predisposed or have a genetic tendency to develop it. Still, it is interesting to note that the incidence of diabetes is growing, so perhaps there is some environmental trigger. Let's hope that Mr. Hurley's work ignites more interest and brings about more research on type 1, which often is the forgotten form of diabetes. Type 2 is more common, but I would argue, with plenty of evidence supporting my argument, that type 1 is more difficult to control and something that demands more research.

Of course, I have it, so I think more people should work to understand it and cure it. 

Weird New Year

 Diabetes never is predictable, and that's the precise reason why routine testing of blood sugars is so necessary.

In the past two weeks, I've experiences a roller-coaster ride with my own blood sugars. It's hard to say whether that's been due to kidney disease, some holiday virus or just some weird variation in blood-glucose levels that can and often does occur in the course of everyday life. I doubt it's the latter. 

It also did not help that I actually forgot to take my morning injection of insulin on Monday.

I awoke and got my vitamins and blood-pressure pills but neglected that morning to take my daily injection of 80 units of Levemir humulin. Before I went to work, I realized my blood sugar was running unusually high, and I told wife Suellen that I might have forgotten my injection. But not quite remembering whether I took it or not -- which is one of the problems of taking so many injections that they become rather automatic and not always memorable -- I decided not to take any Levemir that morning, despite all signals that I had forgotten the injection.

Normal blood sugar levels are 80 to 100 mg/dL  The idea is not to let them run  too high above that level or dip below 70 mg/dL. Even 70 requires some corrective action. 

As an alternative -- and I've done this only two times previously in the last 10 years -- I decided to keep my sugar intact only with repeated injections of Novolog throughout the day. Novolog is a fast-acting insulin, but of short duration, that usually kicks in in about 60 to 75 minutes for me and continues with a tail of activity for several hours.  I took Novolog before leaving home. But when I arrived at work my sugar was almost 300. I took a really big shot of Novolog -- 10 units.  Before lunch I took another shot of Novolog, but my blood sugar proceeded to soar into the mid-200s that afternoon, prompting some corrective action in the form of yet another injection of Novolog. Same thing occurred that evening. Even though my sugar was OK for supper, I took another shot, but still found myself over 200 before going to bed. So I took yet another shot, but my sugar level the next morning again was above 200.

That's to say,  I royally failed in my efforts on Monday to keep my sugar levels under control after missing my morning dose. I likely needed larger shots of Novolog or a lot more  smaller injections.

Since then, as had occurred to some degree prior to Monday, my sugar levels have been running higher than usual. I've used more Novolog and even started a new insulin pen to assure that the insulin is fresh and full-powered. Perhaps I have a low-level viral infection in my body. I've felt a bit worn out lately, so it could be illness. Any infection, especially the flu, can cause blood sugar levels to soar higher and even to fatal levels if large doses of insulin aren't taken. Or perhaps I'm in the process of becoming a type 1.5, which is a mixture of type 1 and type 2.  Perhaps it is declining kidney function. The latter is my least favored option because I must keep my minimal kidney function intact for several years while awaitng a kidney transplant. If not, I'll need dialysis.

I have doctor appointments (nephrologist and endocrinologist) on Jan. 20, which also is my deadline for get another blood test for the UPMC Thomas E. Starzl Transplantation Institute so my bloodwork remains current. Hopefully I'[ll be able to sort through this and get my numbers under control. The holidays always have been hard on me, and my diabetes, often due to colds, infections or, in years past, the flu. I feel that keeping my blood sugar in the normal range, with an A1C below 6, has been key to preserving kidney function for the past 15 years. When sugar levels trend higher, it concerns me that I'm doing more damage to already damaged kidneys.

I will make adjustments, including eating less, taking more insulin, testing even more often than usual, and quizzing doctors about the situation.

And I'm especially anxious to get a new A1C, and see if I've managed to remain under 6.  At this point, I'm not confident that that will occur this time.

Winning this battle of  diabetes control, as with the outcome of sporting events, depends on the numbers.

Holiday success

 Finally I managed to control my blood sugar on a holiday. Sound the trumpets.

Usually I end up taking too much insulin because I inevitably anticipate that I will eat more than I usually do. The typically results in low blood sugar.

And wife Suellen always scolds me when it happens.

But this year, we did not cook a Christmas dinner. Instead we went to a Chinese/Japanese restaurant, and that meant eating at a more predictable time without having to focus on food preparation.  This year I didn't even make a cheeseball.

 My sugar did reach 65 mg/dL so Suellen drove to the restaurant. But I  never reached the red zone of sub 60 -- in  50s, 40s, or even lower.

I ate plenty for lunch -- seafood, sweet-and-sour soup, and brown rice -- and tested often, and by day's end, I had survived Christmas Day without going too high or getting dangerously low.

Success.

I've been taking a bit more insulin lately because my numbers have trended a bit higher than what I wanted. I have not had an A1C test in a while, but will have one in January.  I'm confident it will be 6 or below, but I'm never sure until I see the numbers. The added insulin has brought my average reading close to 100..

I'm also approaching my first month on the transplant list. Sound the Kazoo.

I'm feeling well and remain functional. My resolution for the New Year will be to increase my level of exercise.  It is one segment of life that has been somewhat, albeit not entirely, overlooked during the recent months through the transplant process plus other projects I've been involved with. I still walk almost daily, but do not get enough exercise to make me feel satisifed.

A worthy resolution for all people with diabetes would be to improve our blood-sugar levels and our diets and make sure we're getting enough exercise. Those with an AIC higher than 7 percent should strive to lower it a percentage point this year. That is a resolution that will improve and likely extend one's life.  It also could help prevent illness and handicaps, including renal failure, as one ages. Trust me, the AIC is your map to good health. Those that do not have a reasonably good AIC are destined to suffer diabetes complications. 

In 2010, I'm predicting I will not experience a transplant. Too early, although I'm still keeping my cell phone charged in case the call comes through. I'm keeping my mind focused on what I need to do to remain on the list.  But I've pretty much put any thoughts of transplantation on hold, lest obsession set in.

Remain healthy as possible and let the clock tick on.

H1N1 vaccine, finally

Finally, at long last, I received my H1N1 vaccine at the Allegheny County Health Department immunization center in Oakland. There was a steady stream of people getting the vaccine on Thursday, especially now that anyone qualifies to get the vaccine. It didn't take long. Just fill out a form, wait a minute or two, get the zap in the arm, then go on your merry way.

Even though the incidence of H1N1 has declined dramatically, there is plenty of science suggesting that we will experience a third wave before the end of winter. So be forewarned.

Yesterday, while I was in Oakland, I also stopped at the Starzl Institute to get my monthly bloodwork drawn to keep all tests current. That went quickly, too. The only pain is removing the bandage the evening after the test. Ouch and double ouch. They need to invent sticky nonstick tape.

so now I'm in good -- no, great -- shape for the holidays.  I'm happy to have gotten all medical tests completed and successfully to have fulfilled all my responsibilities for the transplant before the holidays. Key to this process, I'm realizing, is to remain current, follow directions and keep a positive state of mind.

Which reminds me, I need to schedule my appointment with urologist Dr. Ronald Benoit of UPMC for April.

That's all to say, I'm feeling pretty happy at this point. All is well with my job, my writing projects at home (that I'll discuss at a later time), the kidney transplantation process and life in general. Our "new" old farm known as "Hideaway" is beautiful. And despite the kidney problems, I have more energy now than I had for decades with my blood sugar under tight control. I have let my exercise routine slip a bit in the past two months, but that will be my New Year's Resolution.

Good diet. Good blood sugar. Recommended dose of exercise. That's the easy prescription for healthy living, whether you have diabetes or not..

My goal now is to keep my cell phone charged in case I get THE KIDNEY CALL from the transplant institute and make sure I'm always wearing clean underwear. 

Life is good.

Bring on Christmas.

Transplant duties and deadlines

OK, I'm officially on the transplant list. But if you think being on the list means it's time to relax, think again. Stuff needs to be done in the meantime.

UPMC's Thomas E. Starzl Transplantation Institute has sent me a big packet of information of necessary tests I must receive to remain active on the transplant list. Already, as I've noted numerous times before, I've already undergone 18 medical tests including a prostate biopsy (ouch) to qualify to have my name placed on the list.

But being on the list is no right. It is something one earn with reasonably good health and due dilligence. Slackers need not apply.

That's to say, I have follow-up chores I must complete to remain qualified for kidney-pancreas transplant should they become immediately available, with my name written on them. But this is nothing that can be scheduled. You must be on call at all times because, as the letter states, "waiting time can vary from a period of days to years.".

With doctors' appointment schedules being what they are, I must schedule appointments now for April, then remember to be timely in scheduling appointments to be completed by next October. I must have follow-up prostate exams, including digital rectal exam, every six months along with a prostate-specific antigen or PSA tests every six months..

By next October, I must have completed another Adenosine Thallium stress test, an echocardiogram, Hepatisis B and C screenings, and HIV anitibody tests.

And if I go on dialysis, I will be required to have a cardiac catheterization, due to my having had diabetes for 43 years. That will test my heart and assure it's strong enough to withstand the rigors of organ transplantation.  I'm not required to get  such a test now because the contrasts they use would kill off what little kidney function I currently have.

More to the moment, each month I must also have blood drawn and have it sent to the institute to make sure my bloodwork is up to date. That bloodwork, including blood antigens and other details, is needed to properly match me with a kidney and/or pancreas. it will save time if the bloodwork is done in advance each month. In fact, if the bloodwork is not current when an organ match occurs, I could be ineligible because of the lack of current bloodwork. 

I feel windsept. 

 "We are all very understanding of the stress that accompanies the waiting period," the institute states. "The uncertainty of when the transplant will occur, coupled with not feeling well may magnify life's everyday stresses and strains. We assure you that this is a normal response and would like to hear from you if you are having problems coping."

That means I  must be abnormal. Albeit windswept, I have had no problems coping after having been on the transplant lists precisely two weeks.

But give me time.