Today Mom’s still in the hospital.  Originally it was for pneumonia, and then they said that it didn’t look like she had pneumonia, but bronchitis.  (She has emphysema and they said that they misread the emphysema on the x-ray for pneumonia).  Now they’re saying that her heart rate is all over the place.  She’s had a-fibs for a few days and the thyroid medicine she’s been on for years was at too high of a level and affected her heart.

In Atrial Fibrillation (A-Fib) the upper part of your heart beats (quivers) faster than the rest of your heart. If you could look inside your chest, the top part of your heart would be shaking like Jell-O or beating more rapidly than the lower section of your heart. You feel an uncomfortable flutter in your chest or like your heart is going to jump out of your ribs or that your heart is “flip-flopping around.” Your pulse is irregular and/or more rapid than normal. Someone described their A-Fib as “…like a motor idling too fast in my chest.” You may feel lightheaded, very tired, have shortness of breath, sweating and chest pain, and sometimes a distressing need for frequent urination (it isn’t clear how A-Fib and frequent urination are related).
Somewhere in your heart extra electrical signals are being generated which cause the top part of your heart to contract and quiver rapidly and irregularly (fibrillate) as many as 300-600 times a minute.

http://www.a-fib.com/Overview.htm

I called Dad today on the way to work and he sounded pretty good.  He said he’s feeling a lot better, since he had dialysis yesterday.  He said it took about 4 hours, all told after set up and take down and everything.  His creatinine levels were in the high 7s before starting and now are in the mid 4s.  So that’s a great improvement.  He’ll get another treatment of dialysis today or tomorrow, and then will continue with outpatient dialysis after he leaves Edward on Wednesday.

Anyway, Dad looked good, nice color, 5 o’clock shadow and all.  He was enjoying his lime-themed lunch.  Lime jello, lime sorbet (big hit!) and lemon lime soda.  He did have a couple coughing incidents, one in which he needed help sitting up so he could clear his throat.  Not fun.  I do know the feeling, having had pnemonia back in 8th grade.  Tomorrow el doctoros will decide whether or not Dad needs to start dialysis on Monday.  He is planning on being home by Wednesday, here’s hoping!  Getting home today I got a package in the mail.  It is a box that I need to take to the local lab and get my blood drawn so they can mix it w/dad’s and see if we are a match for kidneys.  Here’s hoping! 

Over and out,

Amy

It appears that Dad has pneumonia now.  There are speculations that he caught it when he was at Edward last week for a colonoscopy.  Nothing confirmed.  He wasn’t able to sleep much Wednesday night because of his constant coughing.

I just spoke with Mike who is Dad-side at Edward and he said this:

They’ve got him on steriods and antibiotics and have been giving him food.  He’s sleeping now.  If you want to call, don’t call Mike’s cell phone because he doesn’t have a good signal in the hospital.  Dad’s room number is 519 and his room phone number is (630) 646-0519.  (As long as you know the room number at Edward hospital, the phone number is always (630) 646-0___.)  Dad’s also very anemic so they’re going to hydrate him and give him some blood and hopefully that will make him feel better.

More news later.  Thanks in advance for all of your prayers.

A change of plans.  

Day before yesterday, Dr. Fang, boy nephrologist, made a loud case for me getting the transplant.  He said I was in good health compared to other folks in his practice.  Said my immune system has not been compromised, etc.  He (and Kolra my internist) said they’d be glad to write letters to Loyola.  By the way, we got the whole thing started again when Mike called Loyola U.  to ask about the promised letter of decision re my acceptability for a transplant.  They went, didn’t we send that letter out?  It went to your address in DesPlaines, IL….  Oh well!

Here we are at another Christmas.  I am a lot better than the last one.  I am up and around, about half the time with my trusty walker.  We went to Ed’s house (the old Corkery family homestead) last night.  Mike knew that the front steps would be dicey, so he helped me across the back yard and up the back steps, that way.  In about six inches of new snow.  It was tough going.  The walker dug in every inch of the way.  But we made it without falling even a little bit.  Going back to the car the front way was much tougher.  Ed did throw a lot of salt on the steps, but there’s no real railings, so I made a mess of climbing down.  Ed and Mike and Joe had to help/supervise me quite closely.  I sweated it all the way down.  Then it was tough getting out to the car in the deep snow.  Took way too long.  I was gassed by the time I got into the car.  Luckily, Kayrene maneuvered us home safely  I was sure glad to slide into bed.

    I had a real good time at the party.  Ed, Sarah, Jack and Genevieve played host.  The five Rollers were there, as were John and his two sons, Shawn, with his significant other, Michele and Chris.  All five of ours were there, Sheila home from Canada, Mike and Joe down from Madison, Wisconsin, Amy and her family and Katie and Danny and the unborn Question Mark.  I was the grandfather, the oldest one there.  Kayrene was the grandmother.  The older people are all dead now.  It was a loud and happy night for all.

I am hanging in there still.  I put on twenty pounds in the last month.  My creatinine is up over six now for a couple of months.  But I’m still putting out a lot of urine, I am neither weak nor confused and feel pretty well.  So Dr. Fang has not put me on dialysis yet.  A couple of months ago, Loyola University transplant experts examined me, said they’d get back to me and never did.  I  think they think I’m too big a risk, based on age and my general health picture.  Fang disputed that strongly, said there’s nothing wrong with my immune system.  He recommended I try the U of Wisconsin at Madison; they have an excellent reputation.   So I think I’ll trek up there and stay with Mike and Joe and get me and Joe checked out.  Joe has been offering one one of his kidneys for a long time.  So maybe we’ll track down that approach.  So thanks for listening.  I’ll see you all later.  Come visit.  God bless,  

Walking When I first got home/home, I was in pretty good walking shape. I had gone through about 1 1/2 hours/day of physical therapy (pt). This involved strenuous hopping — at the home, Marianjoy — on one foot for maybe 200 ft/day. So I felt strong. Example — it is now easy for me to stand up out of the car.

I had also done a lot of arm- and leg - exercises, all isometric. Leg exercises were done on a large bench raised off the floor about 2 ft. It was easy to roll over and otherwise move my 222 lbs around. I tried leg exercises at home/home, on the floor. But, it is too hard to get down, roll over and then get back up again — I am 69 and usually feel it! I walk almost everywhere with the walker (from good ole mom). Exception is in the house; when I have less than 30 ft. to go and furniture and walls to hang onto. Daily, I walk over 1200 ft on the driveway. Mike worries about that because there are bumps, twigs and pine cones in the driveway. I do OK, picking the walker up whenever it tries to tip over. So, fairly much walking.

Dialysis/Fistula I have made it about five years with creatinine going up only from 2.9 (1.0 - 1.5 is normal) through 4.5, where it is now. (6.0 or 7.0 = time for dialysis or a replacement kidney.) I dread dialysis. It requires the surgical building of a fistula — a small, skillful joining of a small vein and artery in the wrist. The fistula gives the dialysis personnel a convenient, large-enough spot to insert the two needles — one for taking blood out of the body into the dialysis machine and the second to return it to the body, cleaned of “poisons”. And then, apparently, I will get dialysis every other day for from 3-6 hours at a time. Otherwise, they have to stick the needles under the skin just inside the shoulder.

I am pretty well keeping the creatinine — the percent of poisons in the blood that healthy kidneys flush out — stable, tho it is dangerously high now. Dialysis may be required at any time now, according to Dr. Kalra. The internal medicine guy, Dr. Fang — so help me! — figures that at my current rate of increasing the creatinine level, which is about 1.0 (teaspoons/deciliter? Joke) a year, I still have some time before I have to shudder undergo dialysis, so I can afford to wait on the placement of the fistula. Kalra, like Fang’s predecessor, a Dr. Kozeny, thinks we should have the fistula operation done now; it may take up to a year to mature. So we’ll have it done. Two years ago, I followed Kozeny’s order and got a fistula installed in my right wrist. During the coma, some Dr. Dummy put a line for drawing blood and inserting nutriments in my right arm. And that killed the first fistula. So it has to be done over again. A litle thing, but it’s major surgery….

Eating I have managed to keep my creatinine level down and stable, where it is now, by careful dieting. I read a good book that posits that if you follow a diet low in protein, phosphorus, potassium and sodium, you can avoid dialysis for a long time. According to the case histories in that book, 4 years is a long time…. So I’ve been doing that, not as severely as the book recommends, but pretty faithfully, for the five years of grace. I feel skinnier, tho I have not lost much since the 50 lbs I lost during the coma.

It’s fairly hard to stick to the diet, even to the extent that I have. It means very little tomato whole or juice or paste, oranges or orange juice, corn bread, steak (3 oz is about right), eggs and other protein, dark leafy vegetables, saltines and other salty crackers, potatoes, soups, many prepared foods like deep-fried shrimp, etc., etc. We have a little booklet of about 50 pp that lists many common foods and their levels of the four dangerous elements. I am trying to keep daily entries of what I eat, tho I’m not real faithful about that.

Currently We just saw Dr. Kolra and he said, “Enjoy your life, have a wonderful summer and don’t worry about dialysis for the time being.” I am trying to do all those things.

I sleep pretty well, except that kidney production makes me get up 3 - 4 times/night. I exercise roughly 45″ every day or two, the arm and the leg exercises. I walk on the driveway with the walker about 1200 ft every other day. Mike is here, “baby-sitting” me three + days/wk He drives me all around, makes and makes me keep all the schedules of injections, blood tests, doctor/dental/optomitrist visits, hospital visits, and so on. Kayrene is still working, with a couple of health problems, bless ‘er, and we go to church and out to breakfast most Sundays; we try to go out more often, but I am shy. If you believe that milarky…. John Corkery is still here. He bought a beautiful truck the other day. He is readying all his equipment to get ready to go ferriering. That’s a real word; look it up.

That’s it for now. Peace and love, Donn

The picture posted below is the second picture we took.  In the first picture Dad wasn’t smiling much so I said, “You never smile in pictures!”  So this is what we got.