The Waiting...continued...

Let's take a step back and explain the mathematics of how this transplant list works. Kidneys are offered on a point-based system. Potential recipients are assigned points based on several criteria:

• Time on the transplant list. You receive one point for each full year that you have been on the list and a fraction of a point (1/365) for each day that you have been on the list.
• Genetic match with the potential donor. The closer you match the donor, the more points you get.

When a organs are available for transplant they are offered to patients on a local, regional, and then a national level. This is done to shorten the time that the organs are out of the body. This period is called cold ischemic time, and the shorter the "cold time" before transplant, the better the organs generally work. To shorten this "cold time," the country has been divided into regions, or organ procurement organizations (OPOs). When organs are available within an OPO, it is offered to the patients in that OPO first. The OPO for my region is called "Gift of Life" and it encompasses the eastern half of Pennsylvania, Delaware, and part of southern New Jersey. When organs become available, all medical information is entered into the database, the computer system runs the list, and several potentially eligible recipients are notified. If you are first on the list, the hospital will tell you to come in, "backup" recipients are also notified and put on standby. If the primary recipient cannot be transplanted for medical reasons, or because they are incompatible with the donor, the backup recipients all move up a notch.

So there you go.....this transplant business is complicated stuff. But all things considered, the folks that are running this show have it down to a real science. 
I am thankful for their expertise and dedication.

The $64,000 Question -

 

So, since this whole thing has begun, the question that I've been asked over and over again is "How long is the wait?" This can be a very frustrating and anxiety ridden stage of the transplant process, especially for people who are very sick. I am one of the lucky ones (yeah ...me...lucky....right?), I have surrounded myself with doctors and healthcare professionals that, through my research and investigation, I believe are some of the best. These people have been evaluating me for some time now and in seeing the type of activities I enjoy, and the sort of life I live, have taken a bit of a proactive stance on the need for a transplant. Rather than the reactive approach of waiting until I am real sick, need dialysis, etc. So the waiting time for me right now, while still rife with anxiety and a lot of sleepless nights, is nowhere near as bad as it is for someone who is currently extremely ill and on dialysis 3 times a week.

My Transplant Coordinator at Pinnacle, Rebecca Brown, B.S.N., R.N., C.C.T.C. wrote a great article in the latest newsletter from the transplant center explaining the wait process which I will share here over several posts. (I am still apologizing for the epic, chapter length of the last post but I had to get that off my chest.)

So, how does the transplant list work? The United Network for Organ Sharing (UNOS), is responsible for the sharing of organs nationwide. They have established criteria for placement on the transplant list. When a patient has completed transplant evaluation and has been approved for transplant, their medical information is entered into the UNOS database. This medical information includes the recipient's blood type, HLA (genetic markers), the date they started dialysis or other laboratory data. Per UNOS regulations, you cannot accumulate any waiting time until your GFR (glomerular filtration rate / kidney function) is 20 ml/min or less.

As mentioned in a previous post, with the help of some new meds, dietary changes, and staying hydrated, my latest GFR had rebounded to 22 ml/min but at one point had been as low as 16 ml/min. So, because I have been below 20 at one time, I am currently accruing wait time credits.

That's enough for today but tune in to the next post to see more on The Waiting.

And now a word about...

Hypoglycemia Unawareness

Anyone who has known me for any amount of time knows that after 35 years of this diabetic thing, hypoglycemic unawareness remains one of my biggest problems. The flippin' irony here is that the major instigator of this problem is tight control over your blood sugars and keeping sugars low (the primary goal of the most prudent diabetics) to avoid damaging other essential body parts like the heart, the eyes, the KIDNEYS, etc.

In fact, one of the most distressing problems in diabetes is hypoglycemia unawareness. Normally, a person will feel warning symptoms when their blood sugar goes low, such as shaking and sweating caused by release of stress hormones. However, those with hypoglycemia unawareness have reduced warning signals and do not recognize they are low. Even if they happen to do a blood sugar test they may not realize what they need to do to treat the low. (I test my blood sugars 6-8 times a day and yet this can sneak up at the most unexpected times). It can be soooo sneaky that  a person suffering from HU can be sitting in a chair holding a candybar and not have wherewithal to put it in their mouth. Sometimes, stress hormone release is adequate enough to eventually raise the glucose level, although this may take several hours to work.

That hypoglycemia unawareness could occur during sleep is not surprising since people wake up for less than half of the lows that occur at night, but it happens with equal frequency when people are awake. Unless recognized and treated by someone else, serious problems, such as grand mal seizures, can occur. If you have witnessed seizure activity or bizarre behavior, you have some idea of the danger that hypoglycemia unawareness can present. Fortunately, research and clinical experience has shown that this condition can be reversed.

What Causes Hypoglycemia Unawareness?

Hypoglycemia unawareness is not rare, occurring in 17 percent of those with Type 1 diabetes. Symptoms of a low become less obvious after having diabetes for several years because repeated lows impair the body’s release of stress hormones. The major counter-regulatory hormone that causes glucose to be released by the liver to raise the blood sugar is glucagon. Glucagon secretion is reduced in most people who have Type 1 diabetes within the first two to ten years after onset.

Brain desensitization to hypoglycemia: If a person has frequent episodes of hypoglycemia (even mild ones), the brain becomes "used to" the low glucose and no longer signals for adrenalin to be released during such times. More specifically, there are glucose transporters located in the brain cells (neurons). These transporters increase in number in response to repeated hypoglycemia (this permits the brain to receive a steady supply of glucose even during hypoglycemia). As a result, what was once the hypoglycemic threshold for the brain to signal adrenalin release becomes lower. Epinephrine is not released, if at all, until the blood glucose level has dropped to even lower levels. Clinically, the result is hypoglycemic unawareness.

Since repeated hypoglycemia is common in people with diabetes who strive to keep their glucose levels near normal, the incidence of hypoglycemic unawareness becomes more prevalent in patients who follow 'intensive treatment' protocols.

The most common treatment for this condition is to liberalize the patient's target glucose levels, in an attempt to decrease the frequency of hypoglycemic episodes. Hypoglycemic unawareness will sometimes disappear when the frequency of hypoglycemic episodes has declined, but this is not always the case.

Hypoglycemia unawareness may be triggered by:
A recent history of frequent low blood sugars A rapid drop in blood sugar Having diabetes for many years Stress or depression Situations where self-care is a low priority A previous low blood sugar in the last 24 to 48 hours Use of certain medications like beta blockers

Severe hypoglycemia occurred in 40 percent of people with Type 1 diabetes in one Danish study. Of those who experienced it, it occurred about once every 9 months with coma occurring once every two and a half years. The lower a person’s average blood sugar, the higher the risk for hypoglycemia unawareness. Hypoglycemia unawareness was three times as common in the intensively controlled group compared to the conventionally controlled group in the Diabetes Control and Complications Trial, with 55 percent of the episodes in this study occurring during sleep. Most people do not wake up during most nighttime lows. And recent low blood sugar depletes the stress hormones needed to warn them they are low again. The second low becomes harder to recognize.

A person's actions during Hypoglycemia Unawareness can be bizarre with:
irrational thought big time confusion anger or irritability running away insisting they "feel fine" in the midst of very unusual behavior high stress high emotions laughing and silliness

So.....be patient....and understanding....these people are not....normally hostile....not skitzo....and not drunk.

Try your best to get some sugar into them - high sugar soda, Powerade, orange juice, or  any type of simple sugar. Try to humor them and don't be too controlling or overly aggressive. With the ingestion of a descent amount of sugar, things should return to 'normal ' (hmmmmmm) in about 20 minutes or so. After this quick sugar stabilization, have them eat some more complex carbs, as the simple sugars will take glucose level up quickly, but then they fall rapidly also.

And, as always, ....Thank You for your help and understanding.

A Public Service Announcement

March is National Kidney Month-

How to Care for Your Kidneys

You know that a healthy heart and brain are vital to good health. But when’s the last time you thought about your kidneys? Each March, National Kidney Month reminds Americans what makes these organs so important. But it’s best to keep your kidneys in mind the whole year through.
Your kidneys are 2 bean-shaped organs found at the level of your middle back, below your ribcage. Like your heart, they’re each about the size of your fist. Kidneys play a key role in the body. They remove waste products that build up in your blood, along with extra water. These waste products then pass out of your body as urine. If your kidneys shut down or stop working as they should, it can lead to serious health problems, blogs like this, and all sorts of other things.
There are 2 major risk factors for kidney disease. These include diabetes and hypertension (high blood pressure). If you have one of these health problems, you can help manage your condition through exercise, diet, and other healthy living choices. Follow these tips to help protect your kidneys:

• Shoot for 30 minutes of exercise, 5 days a week.
• Try to trim down if you’re overweight (even losing a few pounds can greatly improve your health). 
• Limit the amount of salt in your diet (check food labels for sodium content).   Yeah Yeah OK OK.
• Cut back on alcohol if you drink. 
• Fill up on fresh fruits, veggies, and low-fat dairy foods. 
• Seek out healthy ways to relieve stress. (Try yoga, painting, or meditation. Stay away from photography).
• Nix the tobacco habit (cigarettes, cigars, chew, and all).

These tips are tailored to people with diabetes and hypertension. But anyone can better care for their kidneys by making a few of these changes. Although they’re not the most familiar part of the body, your kidneys deserve some extra TLC.

Thanks for passing this along Debbie!

Feel Like a Number

OK.....so it is February 28th....and I didn't win an Oscar even though the Best Documentary Feature went to a film called "Inside Job" (no relation). But I did have appointments with my endocrinologists and nephrologist and actually got good reports from both.

• I lost some weight.
• My A1c was on target at 6.7%.
• Fructoseamine was just a tad bit high at 329.
• Blood pressure was 104/63
• LDL and HDL cholesterol were both good.
• My creatinine levels, the tell-tale indicator of kidney function, was 3.04% which is a bit better than it was at my last appointment.
• My Glomerular Filtration Rate was 22 and this was a 2 point increase over the last test, which is good.(GFR): Your GFR tells how much kidney function you have. It may be estimated from your blood level of creatinine. If your GFR falls below 30 you need to see a kidney disease specialist.
  A GFR below 15 indicates that you need to start  treatments like dialysis or have a kidney transplant.

And so......when I asked the doctor just what has precipitated this positive turn in numbers he credited it to my staying active, staying hydrated, eating well (I try), maintaining good blood sugar levels and keeping my blood pressure in check. He told me this at my last appointment and I've been really trying so it's kinda nice to see a bit of a payoff. He also tells me that all this good news can't put off the inevitable, but rather it is
"buying me time." 

Although good living promotes good numbers I also credit prayers, good vibes, and the like from all of you, so Thanks for that!

As in most issues, good numbers make for a good day. It may be a mind game - as my friend John Barr said once:
 "The balances are all the same - the only difference is where you put the decimal point."

The decimal points fell in my favor today and I'll take it.

I'm a Bloody Good Blood Machine..........

You know it's a shame that they won't take my blood for just an outright blood donation because this is something that I'm really good at.
When the phlebotomists at the local annex take my blood, they always marvel at how good my veins are and at just how quick I fill the tubes.
This is good because this transplant business is all about blood tests.

• Each month the people at Pinnacle need a PRA (Leukocyte Ab Battery) Levels test.
• My nephrologist requires a Renal Function Panel which includes Alb, Ca, CO2, Cl, Cre, Glu, Phos, K, Na, BUN and CBC without Diff.
  Blood creatinine levels, just one of these tests, tell just how good your kidneys are functioning
  - the higher the number - the worse your kidneys are working.
• My endocrinologist, on a good day, only wants a Hemoglobin A1c - an average measure of my blood glucose levels over the past 3 months (as he gets to see the results of everyone elses' tests).

I am anxious to find out my latest numbers of all of these at my next appointments on February 28th.

So blood tests have been a marked part of my past, they are sure a big part of the present, and if things go as anticipated, they will be an even bigger bellwether in the future.
They tell me that post-transplant the "routine schedule" for blood draws are as follows:

• 0 - 6 months after transplant - blood draws are done twice a week.
• 6 - 12 months after transplant - blood draws are done once a week.
• 12 - 18 months after transplant - blood draws are done every other week.
• And after 18 months - blood draws are done once a month.

And so if it's true, what the poet Rainer Maria Rilke says, that
"All the soarings of my mind begin in my blood."
.....we better watch out 'cos there are a lot of  my "soarings" going around these days.

No side steps into Heaven.

Well, there goes my chance at this shot.....Transplant Ban on Papal Organs.
        Dammit!!!   Son of a..........   Oh. Wait.