10 weeks through dialysis

Its been 10 weeks since I started my dialysis. There's been a few ups n downs and frustrations but the Doctors and I think we have it under control now. The dialysis itself is going fine, I have the process down now. It has cleaned all the toxins that's been stored in my body so I do feel better. Got my appetite back and as of Thursday Dec 18th I reached 170 lbs. So have gained all the weight back that I lost.
There has been a few frustrations along the way. With the amount of dialysis fluid that I exchange everyday I get dehydrated very easily which drops my blood pressure. I try to keep drinking fluids and mix up some broth with extra sodium to help retain the fluids . It seems to help but I get very tired and not much stamina to do much. Also with the extra dextrose in the dialysis fluids that affect my blood sugars. There was a couple weeks where I couldn't get the levels below 400(normal range 120-150). I was adjusting my insulin pump daily to help get the levels down. Between my Doctors and I we finally got it under control and I'm doing much better now.
Last week I had a BIG scare. I finished my dialysis exchange and was dumping my drain bag when I felt all wet. I lifted my shirt and saw that the catheter had come apart so I was leaking all the fluid. I had to QUICKLY get to my supplies and get the emergency clamps to clamp off the end of catheter. My first thought was 'Im heading into surgery to repair this'-- I think if you'd taking my blood pressure at that time the bp machine would have blown up. Of course this was over the lunch hour so calling my Doctor and the Dialysis Center I only got their answering machines. I kept calling for an hour and finally got my Doctor's answering service, which called the Doctor and the Dialysis Center. My dialysis nurse called and told me to get there ASAP. I got a ride out there, don't think my jacket was zipped or my boots were tied. **I was in a hurry**
Colleen looked at the catheter and saw she could repair it.She got a new catheter put back together. But the next problem was a big possibility of infection. She called the Doctor to order the right antibiotics to get in me right away. We did an exchange with the antibiotics and then cross our fingers. We all think it was caught in time so NO infection ''thank god''.
So I have my good and bad days. But it looks like we have things under control. My lab work is coming back great. So I keep on with the dialysis and wait for that phone call for the transplant.

Tested for match

John, co-worker of mine, was interested in donating a kidney to me and was tested to see if we'd match. Yesterday when I was at work.I meant with John and found out that we did not match. Wrong blood type. He was a little upset that we didn't match but told me he was hoping he'd match with someone else. We all have our fingers crossed.
My home dialysis is going OK. Yesterday I had a pretty rough day. I went to work but my blood pressure was so low. I was standing opening an exhibit and went down. I was helped up and put in the Depot's wheelchair. Couple of the building maintenense guys wheeled me across the street to my appartment. I'm very dehydrated with the dialysis exchanges. I had an appointment at the Dialysis Center and when I walked in, my dialysis nurse said "Brian, you look like a ghost, your so white!" I was given a couple bags of IV fluids and as my nurse put it..."you have color in your lips now..you pinked right up" I'm a little ware out today. Just trying to keep pushing fluids to keep the blood pressure up and taking things slow.

Finished Dialysis Training

Today I finished my dialysis training. Everything went great A LOT to learn and go through. Both my dialysis nurses feel I shouldn't have any problems doing my exchanges. I was very nervous in the beginning but feel much better after the last couple days doing them by myself. The biggest thing I need to be careful of is getting an infection. EVERYTHING must be clean, sterile, and sanitized to prevent from getting infected. Just need to go slow and follow all the steps during my exchange and things will be fine.
Now that I've started dialysis. Now its waiting for that phone call from UM Fairview Transplant Center that I have a match kidney/pancreas for a transplant. We all need to cross our fingers, say a little prayer, that the phone call comes sooner then later.

Dialysis Training

I started my dialysis training this week. A lot to remember, many steps that need to be followed. Can't skip any or I must start over. The dialysis nurse and I made up a little cheat sheet that I can follow along so I don't miss a step. I was doing 3 exchanges at the Center with my dialysis nurse. First day went great but yesterday I had some pain in my lower abdomen but it did decrease when I filled the fluid back in the peritoneal. Today went so good. My dialysis nurse packed up all my equipment and brought to my apartment. To help me set up my area where I'll do my dialysis. Once we set everything up I did my first exchange in my apartment. Then tonight before bed I'll do my first exchange by myself. I'm a bit nervous about doing the first exchange myself.
As Cindy(dialysis nurse) said, "take your time and follow your steps. You'll do fine"
Guess if she didn't think I could handle this by myself she wouldn't have me doing it already. I know I can do this and this is what I have to do. I can't quite see the light at the end of the tunnel but at least I'm in the tunnel. So I'll get there.

Dialysis

I had my Doctor appointment this week. The peritoneal has healed, so on Monday Oct 6th I will start a week of dialysis training at the Dialysis Center. Then after the week I'll be doing the dialysis exchanges at home. Yesterday I received my first order of supplies, 40 cases. Thanks to Mom, Leslie, Laurie, and Terry moving furniture and removing some to make room for my supplies. THANKS GUYS, couldn't have done it without any of you.
I'm little nervous about doing the exchanges at home because of my vision. But talking with my nurses at the Dialysis Center, they will help label things and be 100% sure I can do this before I finish the week of training. Everything needs to be sterile to prevent infection. so the labeling will really help so I wouldn't need to touch or handle each item.
Its been a long wait but I know this will all help me start feeling better, get my energy and appetite back, and get back to 100%. IT CAN'T START SOON ENOUGH!!!

National Kidney/Pancreas Transplant List

I was just called by my transplant coordinator at the UM Transplant Center. As of today, I am now on the National Kidney/Pancreas Transplant List. There is a few things I need to do ASAP. The Transplant Center needs fresh blood platelets(my last samples were from this past Feb)and every 2 months I will need to have blood drawn here in Duluth to be sent to the Transplant Center. Mary Beth(my coordinator) is sending me a packet that I'll need to fill out and list every name and phone # where I can be reached. This included my home/cell, my work #, and any family #s. I'm letting some of you know that I will list your name/#s. Now we all need to cross our fingers that the 'PHONE CALL' comes sooner then later. Right now its an average of 6 yrs to receive a kidney.

This past Friday I had my peritoneal catheter surgery. The surgery went fine but I was sick and some pain for 2 days after the surgery. I'm at home now doing pretty good. Still little sore and still not much energy or appetite. It takes bout a month for the peritoneal to heal before I can start the dialysis. Every week I'll go to the Dialysis Center to have the dressing changed and have it flushed. Oct 6-10 I'll have all day training at the Dialysis Center then after the week I will be doing the dialysis at home. My Kidney nurse told me once I start dialysis it should take bout 2 weeks for me to start feeling better. FOR ME THAT CAN'T START SOON ENOUGH.

Another Update

Another update with my transplant process.

My health as been slowly going down. Not feeling well, no energy, no appetite, and loosing weight(which y'all know I can't afford to). Each week I go in for lab work and visit with my kidney nurse/doctor. Last week we all decided it was time to start some type of dialysis.

On Friday Sept 5th I will have minor surgery to place a small catheter through my lower abdominal wall and into the peritoneal cavity. A small hose will be attached to the catheter to which provides the means of attaching the bags of dialysis fluids. The fluid will stay in my peritoneal cavity for several hours. During this time,waste products and excess fluid pass from the blood into the peritoneal cavity. After the completed dwell time (period of time dialysis solution is in the abdomen). The solution will be drained from the cavity. I will then fill the cavity with fresh solution and the process will begin again

Since I don't have to go to a dialysis center for treatment, PD (peritoneal dialysis) give me more control. I can do treatments at home, at work, on trips. Give me a lot more independence. I've been working not to go on dialysis but the way I feel its time.

Also last week I got quite a surprise at work. One of the maintenance guys at the Depot came up to me and ask how he can be tested because if we match he'd like to donate one of his kidneys. What a SURPRISE. I didn't know what to say, it was such a shock. This next week John will get tested so if everyone could cross fingers,arms,legs,eyes and say a little prayer that there is a match. I'll let everyone how the test comes out. **If anyone else might be interested in being tested. You can contact Me, Mom or Laurie to start the process***

FATHER'S DAY

Happy Fathers Day

Love and Miss You

Update

Update on my transplants.
Every month I have lab work and everything is checking out good. On June 18th I'll have a couple tests. An ultra-sound of my kidneys and bladder to check on their progression. Then after the ultra-sound I'll have a CT scan of my heart and lungs. When I was at the UM Transplant Center, during my initial workup this past Feb they took a chest x-ray and noticed a spot(module) on one of my lungs. They would like the CT scan to get an better idea of this spot.
Then in July I'll go in for my 2 year colonoscapy and continue each month with my labs. I'll let y'all know my tests resoles when I get them back.

Leatherheads-Renee & George

'LEATHERHEADS'

Renee Zellweger

GEORGE CLOONEY

Rubbing Elbows with Hollywood

Today I was rubbing elbows with Hollywood at the Depot. The Depot hosted a news conference with George Clooney and Renee Zellweger on the release of the movie "Leatherheads". The movie is based on the Duluth Eskimos a professional NFL football team in the 1920s. It was very exciting for us at the Depot and the city of Duluth to host this. Few pictures and autagraphs of Renee and George. Me standing next to the uniform Clooney ware in the movie, which he donated to the Depot.

U of M transplant evaluation

Last Wednesday I had my transplant evaluation at U of M Fairview Transplant Center. Mom, Laurie, and Jon came with me. It was a long day(they took 18 test tubes of blood-my arm is still bruised and finaly got my blood type B positive) but we all learned a lot about transplants. I will definitely need a kidney. They tested my kidney function and I'm down to 18%. Which is worse from what I've been told by my Doctors here in Duluth. And at 15% I will need to start dialsis. At this point my best choice is a living donor then the next choice is being placed on the National organ tranplant list and waiting for a kidney to come available, on average up to a 5 year wait.
I recieved a call yesterday from the tranplant center saying I'm a great canidate for the kidney/pancreas transplant. But they would like me to have a couple more test. So I need to have another stress test just to make sure my heart is strong enough for the operations. I have blood work done every month to stay on top of my kidney function and my diabetes.
I will keep everyone informed on my progress and if anyone has questions you can contact either Laurie or Jon.

U of M Transplant Center

Universaty of Minnesota Transplant Center, Fairview Hospital --- kidney/pancreas transplant
www.fairviewtransplant.org

On March 12th I have my transplant evalution at U of M Transplant Center down in Minneapolis. Mom and Laurie will be with me. I'll go through more tests(EKG, blood work, chest xray) and meet with my transplant cooridator, surgeon, dietain, and go through a class about the transplant procedure. Where I'll need to go once I recieve the call that there is organs available. We will be at the Transplant Center 7am to about 4pm. It will a long and busy day with lots of information and how the transplant proccess works. Then I'll be placed on the Nationwide kidney/pancreas transplant list. I will let everyone know after my evaluation how things went and what I'll look forward to.