So I had a very good visit today with my nephrologist. My blood work showed some very good progress. My phosphorus level, which for several months had been over 8 was down to 5.3. Also my KT/V showed that my blood is being cleaned well so my doctor wants me to continue with my 5 days of treatments and 30 liters of dialysate per treatment. My blood pressure is still an issue and was 100/60 at my appointment and we are hoping it goes back up on a consistent basis. He didn’t change my medications and he approves my taking it only on days when I wake and it is over 125/70. Any morning pressure that is too low and I don’t take my medication. He was also very happy that I finally got a screening with the Yale Transplant Center and that my wife is a donor match. He was also very happy that I finally got a screening with the Yale Transplant Center and that my wife is a donor match. Also the big news was that my weight went down 7 pounds from my February appointment. That is great news and it shows that my dieting and the hours at the gym are finally starting to pay off and show some results. I am trying to do an hour per day on the treadmill and some weights for my legs and back and some for my abs. I am avoiding anything with my arms because I want to avoid putting any strain on my fistula. It was very nice to meet with the dietician, social worker, doctor and nurses and have good news to talk about rather than control what you eat and drink etc….. I hope I can keep this up.
I have a variety of things on my mind this week but they will have to wait. Foremost on my mind is the death of my friend James Goodman. Jim was a friend from church. We have been on the Vestry and the church Finance Committee together and were going to be involved with our churches planned giving efforts. Jim survived a liver transplant and just last year had a lung transplant but never adjusted to the new lung. He was a great presence on the vestry and finance committee and will be missed. He leaves behind his wife Sue and two teenage sons, Allen and Christopher. When I first knew I was going to have to go on dialysis I had a good conversation with Jim about transplants in general. Now I realize there is a big difference between liver, lung and kidneys, but we talked about the mental preparation and the need to take charge of your health care rather than just going along with the doctor. His advice at the start of my ordeal helped me prepare and to deal better when my dialysis started. We never interacted socially, other than abusing him over his questionable choice in sports teams (the Packers and the Mets). Jim, you will be remembered fondly by many – may you rest in peace and rise in glory.
So March is National Kidney Awareness Month and today is World Kidney Day. There are so many different issues that contribute to Kidney Disease that it is a serious health issue. 1 in 10 Americans will have some form of Kidney Disease. Not that it always ends in dialysis for everyone, but it can lead to dialysis which can then overwhelm. For me it was not managing my diabetes, smoking and high blood pressure that were the main contributors. Risks are different for men and women and for African Americans. Growing up I never encountered anyone with Kidney issues or on Diaylysis. It was the time before facebook and blogs and knowing those intimate details we all seem to share today, but since moving back to CT, 10 years ago, I have had several volunteers in Scouting that were on hemo-dialysis. Since my kidneys failed in 2012 I have met a variety of people on dialysis or that have had successful transplants. They are all over the spectrum, young and old, obese and anorexic, black and white, men and women. Like everything else these days you can research Kidney Disease online and find out the symptoms and your individual risk. To learn more visit http://www.davita.com or talk to your own personal doctor, but don’t ignore this health issue.
So this weekend was just non-stop! Friday I drove to Ithaca to get Carolyn for her spring break! It was the first trip to Ithaca without snow falling so I made very good time. It was a beautiful sunny day and was like 45 degrees in Ithaca – a heat wave! Carolyn did all the driving on the way back but I did have five hours of conversation with her – probably the longest stretch I will have her alone on her break! We got home around 7 pm and her new boyfriend Niels came by so that may be the end of us seeing her for the rest of break.
Saturday I went to the gym early since I missed Friday. Did three miles walking and some weights then came home. Kate and her boy friend Kenny were coming for the weekend. I did my treatment mid-afternoon to early evening and everyone joined me in my dialysis room to watch a movie. Since nobody will be here on St. Patrick’s Day we decided to do Corned Beef/Cabbage a week early. Not that we are Irish, but we do like corned beef. Unfortunately there was not enough to have any left overs for Reubens the next day so that is just incentive to have another corned beef when we are back empty nesting! Surprisingly we were able to bed everyone on air mattresses and folding out the futon.
Sunday we went as a group to church – we took up a whole pew! It was very nice to have a big group and Meg and I both received compliments on having everyone home and actually in church. The best part was that we didn’t have to drag anyone to church – they all wanted to come – well, all my daughters both wanted to come, and their BF’s are smart enough to know they should come with them, but I think both wanted to come. They are both very nice guys (Niels is an Eagle Scout/Camp Staffer and Yankee Fan and Kenny is a PC Grad with Kate & a Red Sox Fan, if you can believe that) and I would probably get along great with each . . . if they weren’t dating my daughters!
After church we went to On the Border for lunch. It was very nice just to be all together and both Meg and I really enjoyed having everyone together. After lunch Kenny and Kate headed back to Pawtucket, RI and Niels headed back to Southington. Meg and I then went for a two-mile walk on the Derby/Shelton River Walk. After the walk we came home and I did my treatment for Sunday. Very long and fun weekend but it is nice and quiet in the house now.
Since last May I have been on dialysis and for much of that time I just went thru the motions and did what I was told to do, but I was getting used to the idea that this was all that my life would be for the foreseeable future. I was fine with this but not really motivated. This weekend that changed when Yale Transplant Center called and let us know that my wife was confirmed as a match with me for a kidney transplant. I never imagined this as a possibility. I came out of the meeting with the Transplant Center thinking I would have a very long time, waiting to move up the list and having a deceased donor kidney.
The best match would come from family member that share DNA, so my brother and sister both offered kidneys. They both are older (12-14 years) and have their own health issues and are not eligible to be considered for a donation. I was very reluctant to approach my daughters about being a donor since one is in college and one is still getting settled into her life. However the process is much less invasive than I originally thought so I was slowly coming around to the thought that my daughters could be a possibility. Now that doesn’t look like it will be needed.
Now this won’t happen any time soon as I still have a variety of testing to go thru and both Meg and I need to lose some weight before they will consider doing a transplant. This has put some energy behind my treatments and exercise routine that wasn’t there before. Hopefully this will continue and I will be able to lose the twenty pounds to get my BMI to where they want it for a successful transplant. For now that small pin prick of light at the end of this seemingly endless tunnel will be the hope I will take now with me to the gym!