Had a care conference yesterday at the unit. Fancy way of saying that my doctor did his rounds. Most of the patients in my dialysis unit are under the care of one physician, so when he comes to do rounds it is mini event with at least one nurse, the dietitian, social worker, and sometimes family present. These care conferences are good times to work things out, but many patients out of lack of knowledge, apathy, or just plain fear do not ask and dialog about what is going on with them and what they wish to have happen. It is unfortunate but the doctor/medical staff and patient relationship for many is at its best poor communication and antagonistic at its worst. Dialysis is a a 50/50 relationship in order to maximize the best quality of experience and life for the patients. I have had to learn to take the best care of myself, listen to what needs to be done, follow my diet and fluid restrictions, report things that are going on with me at home ( everything) and communicate during treatments about basic stuff. The medical staff can then properly and appropriately treat me with all this in mind and make my dialysis experience the best and most efficient for my overall health that it can be. 

Ask, learn, act, be, adjust, re-act, be again, and then ask again. It never ends stable health is only a snapshot of a moment in time, and dialysis, as in any life is a moving process that needs to be seen through the constant movement of all the aspects of ones daily, weekly, monthly, life.

Wednesday morning, at work and realized I need to add to the blog. I ran into someone who recognized me from dialysis and told me that there relative had just started recently at the unit. She explained, quickly, that she and her family were worried about him for some reasons. I was able to explain a few things to her about what was going on and that such and such was normal with blood pressures and being sick during and after treatment, especially when one is in the first few months of the process. She felt a little better knowing this. This interaction just confirmed why I'm doing this blog and what is important for patients, young or old, rookies or veterans, knowing things makes things better. Better health, better peace of mind, and better quality of life, for the patients and their families. The knowledge of what is happening to you, and why things are happening in a certain way doesn't always make you actually feel better physically, but I truly believe that is to shortly follow. When one is given the tools of knowing, they can feel more secure in moving forward with their day to day lives without crippling fear and depression about the situation. That can only add to a better overall health situation. Better state of mind, better state of affairs. My experiences have always, I mean always bore this to be true. 

The last entry on my medical history is from September 28th. I didn't realize how fast things have been going, and how lazy I've been. Anyways on that last entry it was the spring of 1983, Michael Jackson's Thriller was ruling the Billboard charts, Lee Iaccoca was remaking Chrysler...just kidding. I had just received my first Kidney Transplant at the Cleveland Clinic, my bladder was working for the first time in my life, and I was really good for the first time in my memory. Its really strange after being sick for so long, years and years really, and then how you feel literally the second after being woke up after the surgery for the transplant. Its like nothing I have ever experienced at any other times in my life. The amazing clean, and clear, and strong that i felt made it feel as though i could go straight from the recovery room to work hauling bales of hay, while reading advanced physics. That whole week or two after surgery, except for the treatments of horse serum, or other reactions to things was overall a great time for me. 

When it was time to go home i would feel something that I would become more accustomed to (unfortunately) over the next many months, fear. I was becoming used and safe to being in the hospital, and going home away from the constant care and protection of the hospital and the staff I had grown tight with was a little frightening. However, going home was intoxicating, especially after the last few months I had gone through and I went home with a new life in tow.

Being home, in the late April early May of Toledo was like being placed in some type of fairy tale with the majesty of spring, and the good health I was experiencing in my life. I remember just wanting to do everything at once and feel everything now. Rolling on the grass, putting my face up to the sun, smelling the spring blooms. It was all so amazing. I went, after about a week or so of being home, to see all the kids I hadn't seen at school in over five months. It was weird, nobody really understood or recognized me because of the side affects from the predisone I was on that made me look like a plump munchkin from the Wizard of Oz.  I was shunned a bit and felt out of place with kids I had spent my entire childhood with. It was hard, seeing them have fun with each other, and getting ready for junior high. The girls were flirting with the boys, and didn't even see me, at least that is what I thought.

Apart from this I was finishing up the home school stuff for my transition into summer and then back to regular school in the fall. It was the end of May and the Beginning of June, about a month into the transplant when we had some signs of trouble. The transplanted Kidney, according to the weekly lab work I was getting was showing signs of early rejection. in other words my body's immune system had recognized it as a foreign object, no different than say a cold virus, and was mounting a battle to destroy the organ in the body. The numbers were bearing this out. If there is one single lab value that I was getting most intimate with, and the one that would tell me the whole story of the thin line between life and not life it was creatine  numbers. A good one for a functioning normal kidney is (depending on individual lab normals), .8 to 1.2 typically. The creatine is a normal by-product from muscle growth and decay in the body, and is excreted at a regular rate by the kidneys. When this number is higher it indicates something is amiss in the kidney function. 

Late in May and early and June of 1983, this number was climbing fast and the doctors were doing what they could to stop it from getting worse.

I apologize for the lapse in my entries as of late. I have been working so hard and have hit the proverbial wall lately.  I will be adding several entries in the next few days. Look for a continued medical history entry. Thank you to all who have been reading these ramblings. It is appreciated. I have been feeling  little better and had a run to live and die for on Saturday. I know that my hemoglobin is up and I been at least a little more careful with my daily intakes.  

Ive been run down, and my medical team wants to make sure that my lowish hemoglobin is not the result of some unseen and undetected infection. I know I'm fine, but need a little more rest during the week. It seems to be all piling on lately, without a break, and without extra help. Even in the middle of the night, when I can fall asleep, I'm not because my 14 year old pup needs her dad to get up, get out, eat, and not be alone. I love her so that is what a dad does. But after the super-long days its just the extra-xtra that is hard. 

I will be adding more entries on my medical history in the coming week, but one thing has hit me in my remembrances. Its never just about and involving you. There is so many more invested, involved, and part of the story. Their story is part of your story and vice versa. Perspective on others struggles and relations is important when I go through or remember my deal.

Over the weekend I found out that a patient, who had been in the unit at least since I started six years ago has passed away. Robert Cunningham, also known as Rev, because he was a Reverend of the First #1 Church of God was a special and wonderful person. Body ravaged from his diabetes, his kidney failure, and other complications, he was always upbeat, loving, and caring for all those around him. His life was a tribute to the power of love, of god and family, how this carries one through the other stuff of life. The purpose is to love and to serve. I am reminded and moved to think of him, listening to Anita Baker's "Body and Soul" brings his total devotion to his life and his purpose( Not just the words, the soul of the song). The rest of the stuff is meaningless. Love and Best wishes to his family.

Its Thursday. A day off, no work, and no dialysis, I'm in a dream. Oh by the way its sunny, seventy, and a perfect fall day.  Can not wait to get out and run at Ottawa Park. My favorite run, and on a fall day like this, somewhat otherworldly. Heaven like. Yesterday had my monthly blood work drawn at dialysis and want to know if all is well. It keeps me honest on my eating and everything else to see my numbers are OK, also I'm competitive with myself to try to have the best labs every month that I can. As I discussed a couple of entries ago I also want to see where my hemoglobin is. No single lab number is more real and relevant to my day to day feeling and level of activity. 

Besides the new patient I spoke of yesterday, I've noticed some other new faces, and the fact that some other faces are not there. I'll update on this later with more information.

Yesterday in Dialysis I looked across the room to see a person who was coming into the unit for the first time. He looked scared by it all and was trying to assimilate everything going on around him. One of the nurses, who has been there for a long time, and who I know well, spent a great deal of time just talking with him. She is very special that way, assuring and comforting. He just looked so vulnerable. I was happy that she cared. It can be so frightening. You don't feel very well, you go to the doctor, they run tests, you are hospitalized, then told your kidneys don't work right anymore, and that you will need dialysis to stay alive. A catheter is put in and boom. Here you are.

I spoke to him briefly on the way out myself, letting him know it does get easier, and that I was glad to meet him, that he is not by himself. The truth is that it is scary for some, hard for some, harder for others, good and bad at the same time. Frustrating and confusing. Overwhelming and depressing. I told him about this blog if for nothing more than for him to know more about what he is going through is not the first time this has ever happened.

I am grateful.

I have been not feeling the very best lately, not sick, but not feeling as energetic as I had for most of the summer. I know that working as i have been is stretching me out a bit from what I was used to, but still, wish I wasn't quite as tired. Friday afternoon, before dialysis, I did a three mile run and felt like my hemoglobin was "bottomed out", somewhere around 8-9. I do have an uncanny ability to call my hemoglobin within a tenth of a point. From knowing what it is from month to month and then being aware of the number relating to my running and how it feels (breathing, performance, etc.) I have been able to tell how it runs. With that in mind Friday's run really sucked. It was hard, and never really got any point where the pace was easy or not hard. So I felt, and then asked my nursing staff at innovative dialysis to tell me my most recent numbers. It was higher that I had thought it would have been, but it had been dropping from a high point three weeks earlier. Epo had already been bumped up to counter this and due to this adjustment, or just good dialysis, more careful diet and a placebo effect, I then had two very good runs over the weekend. A very fast three miler on Saturday, and a strong five miles on Sunday. 

Busy weekend like usual, with the added bonus that friday night on our way out the door to go to a football game, one of the kids, who have denied any wrongdoing, flushed the toilet wrong causing it to run and overflow for the entire time we were out. Flooded bathroom and a new waterway created in the basement. Cleaning it up was a lot of fun.