Stayin’ alive

A kidney dialysis/transplant diary

Back in time

It’s just after 7 p.m. Thursday, November 8. I’m sitting at the desk in the hotel, a lovely cup for my GoLytely at hand.  I have a colonoscopy  scheduled tomorrow afternoon so it’s bottoms up with a gallon of the liquid laxative.  It seems to work quite well. Enough said.

Back to yesterday and the lost post:

The day started with a blood test at 6:40 a.m.  Only a single vial this time so that went pretty quickly.

Then 7:30 a.m. at the Gonda Building Second Floor for a mammogram, not one of my favorite things.  The boob crushing hurts and the positions you’re asked to assumed make me feel like a cross between Tyra Banks and The Scarecrow from the Wizard of Oz.

The perma cath got in the way, literally. The tech had to retake the shot 4 times before it was satisfactory.  That took a full 90 minutes. Ileft feeling somewhat bruised but unbowed.

From there to the Eisenberg building at 9 a.m. for a medical information review with a nurse and then an appointment with Dr. Amer, my transplant recipient consultant. He quizzed me thoroughly about my medical and family medical history and did a brief exam. He also went through the outside medical records I’d had sent to Mayo.

He is concerned about obesity, of course, and said he felt I would benefit from bariatric surgery and that it would increase the chance of a successful transplant. He’s also concerned about my sleep apnea and said it could be a major obstacle in transplant success.  He suggested we try to do something to improve the apnea.

Also, he is concerned about what appears to be a blood clotting problem with our family. I told him my father died of a massive stroke complicated by a congenital capillary deficiency that made it impossible for the capillaries to carry the pooled blood off the brain; told him about Aaron’s amputation caused by a blood clot; and about my clotting problems on dialysis.

All of those things make a transplant a high-risk venture for me at the moment, but, Dr. Amer said, what he was going to propose to the team is that they place me on the transplant list as temporarily inactive so that I can accrue time on the list but still work on the things that make the success of a transplant a murky proposition.  “Of course,” he said, “I’m only one voice.”

OK, I’ve just finished a quart of this stuff. It’s not too bad, but it sure ain’t a Diet Coke. I did ask at dialysis this afternoon if I should be concerned about this extra fluid.  The nurse practitioner said, and I quote, “No, it all comes off the gut.”

One of the worst things again is the food situation. Nothing but clear liquids before the test from the day before. That’s difficult for a diabetic on many levels, a little scary, too. Frankly, I think that should be one of the first things they address with diabetic patients here for multi-day appointments.

Back to Wednesday.

Dr. Amer set up two more appointments for me. One with a cardiologist on Friday afternoon (after the colonoscopy so I hope I’m coherent) and one Monday with the Thrombophilia Center.

He also told me he thinks there was more going on than Type II diabetes in my kidneys crash. The other things he suspicions are FGS and Membranous Nephropathy. I googled them and came up with this:

Glomerular Diseases

The glomeruli are the kidney’s filtering units. When the glomeruli are injured by trauma or other particular diseases, the kidney has difficulty cleansing the blood and getting rid of wastes and extra fluid in the body. Focal glomerulosclerosis (FGS) is one of more than 20 types of glomerular disorders, and one which often causes permanent kidney failure in adults and children. Some cases of FGS with progression to chronic kidney failure are associated with conditions such as reflux, heroin and HIV nephropathies, but in most cases the cause is unknown. Also of interest is the fact that some individuals with predisposing conditions (such as AIDS or high blood pressure) do not progress from FGS to chronic kidney failure.

Don’t freak out. I don’t have AIDS or HIV but I do have a couple of things that are autoimmune diseases — arthritis, etc.My 12:45 appointment was for an echocardiogram — do not eat for 3 hours before the testing — followed at 2:30 for a vascular uktrasound — do not eat for 6 hours before the test.  Diabetics are instructed to go to desk W19C to find out how to deal with those requests without having low blood sugars. 

 I didn’t think I could squeeze that in, so I asked a desk clerk to please call to get the instructions.  She tried, but the dietitian wouldn’t give them over the phone.  We needed to go to the desk. “She’s free now,” the clerk. “But I’m not, I have an appointment with Dr. Amer.” The dietitian said to come to her desk after the appointment with the doctor.  We did. And we waited until well past noon and finally left with no instructions and growling bellies. Just not the best way to handle diabetics.

The Dobutamine Stress Echocardiogram — again not one of my favorite tests — was most trying because it seemed to affect my restless leg syndrome.  I could hardly control my legs and the urge to just get up off the table was incredible.  It’s so strange to feel your legs have a mind of their own. I think I can empathize better with people with touret’s syndrome.  The flight or fight shakes were pretty intense, too. They lasted about a half an hour, pretty mcuh as the nurse said.

The vascular ultrasound at 2:30 was uneventful though the hangover RLS was difficult to deal with then, too.

Gonna take a break here before I continue with today.

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November 8, 2007 - Posted by | diabetes, dialysis, health, kidney, transplant

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