What a long strange trip it has been...........

Let's see.......where do we start........
At the beginning, I guess.......

Back in August of 2006, I was diagnosed with polysystic kidney disease. I had cysts on my kidneys, there is no cure, and later on, I would need a kidney transplant.
In June of 2008, I was put on the transplant list. I am waiting for a cadaver kidney, or one from a living donor. I did not ASK for a kidney, but sometimes you find someone, who has a family member who is suffering from kidney disease, and although they are not compatible with that patient, another family member will donate to some who is compatible.
It's been a long road. I had fought valiantly to stay off dialysis, and for the most part, had succeeded. I went to work every day and got my work done, but other times I felt not so ambitious.

Which brings us to today.

Mid February, on a Tuesday, I wasn't feeling well.
I felt bloated, and my right side really hurt. I went to work, but came home for supper, and napped. When I woke up, I still wasn't feeling well, and called over to school to tell my co-workers, I wasn't coming back that evening. My sister, Margie, was having dinner with a friend, and when she got home, was alarmed at how I looked. Knowing my condition, she finally coaxed my to go the the Emergency Room at NMC in St. Albans.
While I was there, they ran some tests. Numbers were OK, but they thought maybe I had a kidney stone. A CT scan showed fluid around my right kidney. The thought was one of the cysts on the kidney ruptured, and that was the reason for the fluid. It would eventually be absorbed into my system and I would be fine.
Pretty much a few days later, I was feeling better on that aspect, but something else was going on.
I couldn't breathe.
Or rather, I would do stuff, and be winded.
The Saturday after the ER visit, I went down to Foothills Bakery. I was out of breath by the time I got there.
School was out for Winter Break the following week, and I already had asked for Monday and Tuesday off. Monday morning I walked up to get the mail, and I had to stop a couple of times to catch my breath walking up the big hill. This had never happened before.
I saw my doctor later that day as a follow-up to the ER visit, and my lungs sounded fine and he wasn't sure what was going on. He suggested I call my kidney doctor as it might be related.
I did, talked to a nurse, and they would get back in touch with me.
Wednesday I went to work, and was winded by the time I got to school.I put in a full day, did my work, but found myself having to stop once in a while to catch my breath.
At the end of the work day, Dr. Rimmer's office called to see how I was.
"I can't breathe," I said.
An appointment was set for 10am the next morning.
My worst nightmare was that he was going to tell me that my blood was so full of toxins, that it could not hold any oxygen and it was time for dialysis.

The next morning my brother, Carl, took me to Burlington for my appointment. Dr. Rimmer saw me, checked my out, and said, "I know you are going to fight me on this, but I want to send you to Fletcher Allen for an hour of dialysis. Then we will do two hours tomorrow and three hours on Saturday." Carl had gone in with me, and noticed the look on Dr. Rimmer's face when he saw me. It wasn't good. Another thing they would do is draw blood and have it tested.

I fought hard, but lost the battle. I was on dialysis and my life was not going to be the same.
Then the blood tests came back. A doctor was looking at a computer, turned to look at me and said, "You've lost half your blood." My hemoglobin level was 5.4. Normal is 10-12.The nurse doing dialysis on me commented, "Well, that makes sense. Your blood looks like Kool-Aid."
The thought was to keep me overnight, give me some tranfusions, and see how I was the next day.
This was the first time I was ever going to spend the night in a hospital.
After four units of blood, I was feeling better. Slight problem. The numbers weren't recovering like they should.
Friday morning, Dr. DiCarlo, who is a transplant surgeon, came into the dialysis room with his entourage. I was doing my second day of dialysis.
He came over, pulled up a chair, and leaned on the railing attached to my bed.
He explained that if I had stopped bleeding, fine, he could send me home. But a couple weeks later if another cyst were to rupture, I would need more blood. More transfusions would mean a build-up of anti-bodies in my system, and that could limit what kidney I could receive down the road. If I already had a new kidney via a transplant, the constant bleeding could compromise the new kidney.
"I'd like to remove both kidneys," he said.
I said I needed to talk to my family before making a decision. OK.
I called Margie at work and told her the s--t had hit the fan and they wanted to remove both kidneys. She was on her way over. Carl was hauling a piece of machinery, but I called him anyway and told him what was going on. Margie, meanwhile, called Carl's, wife, Diana, and she was on her way as well.
I was on my way back to my room from dialysis when I ran into Margie and Diana.
Back in my room, I expained the situation best I could without freaking out. An associate of Dr. Di Carlo came in and also explained the situation. Later on,
after Carl arrived, Dr. Di Carlo came in and laid it on the line. I hadn't stopped bleeding. The hemoglobin had not recovered, and while the CT scan in St. Albans had shown a spot the size of a grapefruit, the CT scan done Thursday at Fletcher Allen showed a the spot as the size of a football.
Your kidneys are normally the size of your fist and are located in your lower back. Mine were the size of footballs and had grown to where you could feel them in the front.
I was technically in trouble.
OK, let's do it.
7pm I went into surgery.
One kidney weighed 5 pounds. The other one weighed 8. The blood and fluid removed weighed half again as much, so I lost 20 pounds on the operating table.
Talk about sore.
I have a zipper down my belly from the my ribcage to my belt.
The following Tuesday, I had dialysis, and had problems afterward. They take your blood pressure before, during and after. At the end, they check it with you sitting, then standing. My pressure at the end, sitting, was like 75/41. I stood up. My ears stated clogging up and my eyes saw everything turn gray. BP was 59/39. They took too much off and hit my dry weight. A unit of saline later and I was better. My weight? 211 pounds.
The following Sunday I was good enough to come home. And slowly I have been getting better.

I am on dialysis three times a week in St. Albans. Tuesday, Thursday, and Saturday. I get picked up at 9:15 in the morning, and am back home by 3:15/3:30. Back at the unit in Burlington, one nurse said to me, "This is your job now." meaning dialysis. It certainly is. I am restricted as to what I can eat, and am limited to about a quart to a quart and a half of liquid a day.
My weight when I go in ranges fron 232 to 234. After dialysis, around 225.

In the midlle of all this, a couple of weeks ago, I had to have surgery on my fistula vein. That's the vein they stick the needles in for dialysis. My fistula vein had grown offshoots and the flow was compromised. I needed surgery to tie off the offshoots. My poor left arm.

I am been getting more active and getting my strenght back and will go back to work Monday. I will see how I do.

I want to thank my family for being there for me. I could not have gone through this alone, and Margie, Carl, and Diana have been great. Anthony and Ellie were there. My niece, Elizabeth, was there from Ottawa the day after surgery. I cannot tell you what you all mean to me. Thank you for being there.
Many, many thanks go out to the Fairfax community for all the prayers, and thoughts and well wishes. The outpouring of support has been overwhelming. Thanks to everyone at BFA for their support through all of this.
Thank you to Carry Parsons, Peg Stewart, and Sue Mitchell for the rides to appointments and dialysis. Thank you to Green Mountain Transit Authority out of St. Albans and all their volunteers for supplying me with rides to dialysis.

As of right now, I am just waiting for the phone to ring, and have them tell me I have a new kidney waiting. Any day now.

I will keep you posted.