Just embarked this week on a new dialysis schedule. After eight years of the same days with the same times, I have asked, and been granted, an additional hour on each one of my three days a week. Whereas I was three hours MWF, I now am doing four hour treatments. It will be a real adjustment, as I discovered yesterday on my first of this new time.  With something so regimented as dialysis, and with eight years of the same thing it was a bit uncomfortable, mentally and physically, doing the new thing. I have been trained to go through the three hour treatment over the years, and realized that even that additional hour with take some time getting used to. I asked for the additional time for my overall health. It has been clear from all the research I have done, and after talking to my doctor, that all patients can benefit from as much time as can be reasonably achieved on the machine (dialysis). Just like having a functioning kidney in ones body perpetually, the machine working more can take the place of more of the lost natural function. With my personal goals and responsibilities, I felt that overall I would benefit from the additional time. Feeling better over time, less infections (perhaps), and less mortality rates (not that I am facing imminent death). So the sacrifices seem worth the discomforts and adjustments.

This last week I also received good new regarding a heart ECHO I had done in response to some mild concerns that my doctor had on my overall heart health. It is not uncommon over time, due to previous or consequent events with the dialysis lifestyle to face cardiovascular problems. Even with my exceptional physical regimen, things can still be off, so the ECHO was done to see what was up. By the way, I have had at least 20 ECHOS over the last eight years and the only abnormalities have been  connected with infection issues, which are common in dialysis patients. So the point of all this was that my heart looks strong and normal. Good news, so knock on wood, I'm having a good couple of months.

Just a test

I'm just testing a new way to enter into my blog. If this works I will be entering more often than I have in the past. The wonders of a mobile phone combined with speaking dictation have made this possible.

I bought an iPhone about five months ago and I'm still discovering layers of the things that I can do with it. We will see if this allows me to dictate more entries as I think of things while on the go.

If you are one reading this thanks for putting up with what is really just a test. I look forward to more entries in the near future.

Back

I am, I believe a naturally vain person. Ironically it is difficult, however, to write about myself in this blog. I have felt for a while that I don't really have much of any importance to share. This perspective has driven me away from any regular postings. My life situation is such that the monotony of it all lures me into a sense of feeling that why would anyone care about it all.

That includes, of course the dialysis schedule. Three times a week for three hours each. The running and other physical fitness parts of my days. I do, and I have had to assure many, that no matter what, I still run six days a week, about 20-25 miles. The taking care of my family, the househusband I have become, and the other odds ad ends that I complete each week. I read quite a bit, recently finishing the novel Cloud Atlas, and beginning the Lincoln, Team of Rivals, book.

My wife has told me and my experiences have shown that this blog does seem to speak to many, who either are going through dialysis and kidney disease, or just the universal angst of life's difficult journey.  I do hope that my experiences and knowledge shared can find some home with others who are interested. Again, though, I emphasize, it is sometimes easier for me to just plow through than to share it all with others.

As of October 27, it has been eight years being on dialysis, and waiting for a transplant. In no way do these time markers depress me, so much as I find myself reviewing the period and saying, where does all the time go? My health, overall, has been steady and good. Little things pop up, emergency room visits, and being tired and worn out from the process are inevitable. I have realized that it all passes and I am where I started again, and again.

In the spirit of the promise I made to my wife, at least once a month I will endeavor to share, at least, my current state of health, both physical and mental. Having writing, even this, while my kitten has continued to force her way on to the keyboard, and my lap, has made me feel OK about writing in this venue again.

I have accepted that there are some nights when I simply will not sleep. I rise from my bed around 3:30 after laying for a couple of hours. Check on an obscure movie trivia thing on the Internet, then put on my shoes and shorts and go outside, where, even at that hour I am greeted with a nearly 80 degree temp, with oppressive humidity. I start out slow, in the middle of the street with a slow shuffling jog. Getting worked up to the breath, the stiff legs ( i ran just several hours earlier) and the mind fighting me saying "why are you not in bed". The moon is hazy and the air is thick with moisture. But the roads are nearly completely clear of any traffic and I can run anywhere on the pavement that looks and feels clear. I'm doing "the square". Each stretch of the four sides is exactly one mile. I move a little faster and the pace picks up, but the second side feels sluggish, for me, probably just the humidity. But also tight from doing two runs in six hour period. I've always kept the mantra through my 14 years running, and especially the last eight on dialysis that the only important thing when running is to not stop. Speed comes when it comes, pain comes and goes, breathing will level off no matter the internal and environmental conditions, form is of little real importance, but to keep moving is key. The run is yours and just yours. I like running the last quarter mile of a run like last night when your body forgets, and your mind lets go of all the variables as you fly to the finish point. The moon has been your guide and the silence is your cover. Sweat is pouring down, and the body electric. I come inside bathe and watch a movie before sleeping.

By request a new entry. I've been told to blog by my wife. I've felt for a long time that nothing new happens. Not in a depressing way, more in an eternal wheel of reoccurence way. Since March, and my last entries my health and status has gone through the same cycles they have gone through at least a couple of dozen times since i started dialysis over seven years ago. Good then sick, hospital, coming back, and now renewed strength (running and biking everyday) and gratefulness. I feel, for me at least, that it has all been said before, and don't feel it is very interesting. But perhaps sharing more than just my little issues regarding my day to day with dialysis, waiting for a transplant, etc to expand to just the regular human things, and interactions with life would be good. If not necessarily a potential audience, but maybe just because I feel like writing it down. So with that in mind...

I love sitting on my patio at the crack of dawn having coffee hearing the first birds of the day, smelling the dewy air, and watching my cats explore their kingdom around the flowers and the grass. To see the life and amazement of it all puts me at peace and excited to be here. So waiting continues to be a good thing.

A few weeks back had an new transplant workout done at the Cleveland Clinic. At that time we needed to update some basic medical clearances in order that if and when a kidney becomes available I will be "ready" to go. The tests included a CT scan of my abdomen to see where everything is after a lifetime of surgeries, both kidney replacements and removals. A dental exam making sure no periodontal disease or other dental impairments are present. Also done was a test to see if my bladder, which has not been used in over six years, is functional and physically operational. I had this test done today. A bit unpleasant, catheter and filling a muscle that has shrunk from non-use over the past years, but at least it was short. It only took an hour to have the procedure done, and I got to watch the screen to see just what the Radiologist was viewing, in real time. I have always found it fun to participate in the tests I have been subjected to in my life. I even remember watching a fistula being put in when I was 12 years old. It was wild to see in the mirror above my head on the operating table my arm cut open and the veins and arteries tied together while I, properly numbed and sedated, but not asleep, everything going on while a radio with music played in the operating room. Funny memory. Dr. Fire something at the Clinic. He was cool.

I guess I have taken my participation and ownership in my own health for what it is worth.

Anyways with all the required tests done now I can now check off that list and go back to just dialysis and waiting.

It has been a weekend of warm weather, my son's basketball games, and some running. Even though the runs are still a bit difficult with my hemoglobin low, it has been getting easier. Since my little infection in late January I have dealt with some "readjustments" in my overall body balances. Everything is interconnected. Infection leads to low hemoglobin, low hemoglobin, leads to changes in the delicate balance with my meds that keep my blood pressure in line, and both of those lead to overall difficulty in my energy and workout regimens. Oh I forgot the treatment for any infection (bacteria) is to receive weeks worth of antibiotics. Antibiotics can also effect your overall hemoglobin and in some cases your GI tract.

Bottom line is that the last few days have found some getting back to normal for my entire system. While I have run six days a week since February, even with the compromises, It really has not been fun. Running with these issues makes it feel like I'm trying to run underwater, as I gasp and shuffle through three to four miles. I can still do it. But the work is greater. This week has found me receiving a bump in my epo amounts during dialysis, and an adjustments in my blood pressure meds, which also makes things better too.

The runs the past few weeks have found me remembering that it is the effort in the run is the only real measurement that matters, not the speed of the pace, or the time, or the distance. Work effort is work effort. Do what I can, and just keep moving and breathing. The success is in not quitting. Maybe just showing up ( and on time) in life can be the victory. I learned this from the example of my now passed away Grandfather Klapp, who always just showed up and did what he had to do, whatever that chore may be; taking care of my Grandmother, serving in World War II, and many many other life works.

It has been a jam packed week. Made it to the Cleveland Clinic on Tuesday for a visit with my transplant team. The last time I was there for this transplant work up was over 7 and 1/2 years ago. They felt at this juncture, with my history, and the recent almost kidney, that it was time for us to sit down and hit the refresh button to review where things stand. This is from the obvious things like, my current health, my living circumstances, and goals, to the not so obvious about my thinking, the new procedures that are available an so on.

I have been (apparently) on the "top" of the transplant list for the past several years. But being on top really has no meaning because of the fact that matching me with the right kidney is not easy. It is out there somewhere, and it does exist, but when you consider those factors with the low number of organs coming through, it means I have a wait.

Of course I have already had, and by all medical standards for dialysis patients waiting for organs, an extremely long wait. Many other patients by this point of over seven years are either in one of three categories; transplanted, given up and are just doing dialysis, or more likely deceased.

Many things were discussed, and due to my extreme fitness and health levels, considering my state of affairs as only a dialysis patient, that I, and they (my transplant team in Cleveland), have no problem waiting for the right organ to come along, even if, and very likely, is still years away. While they may be more, as they say, hail mary options out there, it would statistically leave me in a less quality of life position that I enjoy now. It does not make sense. As I said to my doctors, I did not come in suffering to the appointment with worry and fear about my future, and I leave Cleveland feeling just the same. My status quo, while inconvenient at times, is good. The right kidney will come. I'll probably get the call someday while I'm out running in the park, or watching one of the kids playing some sport.

As a bit of a post script to this story. If you have never been to the Cleveland Clinic recently. I believe it is worth the trip to see one of the world's great medical campuses.

My wife and I on our way out from the day long appointment enjoyed sushi, fresh gourmet tea, and a beautiful view, right there in the Clinic. All in all it was a very good day.

Saturday, and my son played his guts out in his Basketball tournament game. They lost but he worked hard, even though he has had an even worse version of the cold I've been nursing all week. I am so proud of his efforts regardless. Trying hard, being there for his team, and showing a little "mean" was all his Mom and I ask.

When I went on dialysis, I got a little mad about it, or as I really think about it, I turned into another "Rocky" time in life. We are given opportunities in life to face fear, disappointment, and set backs, in life and choose to show up and do what is necessary to work through it. Its not the victories that shape us, it truly is the looking at yourself, realizing who you really are, and moving forward. The power of redemption and self realization are what is about.

Funny thing happened yesterday. I had a call from the Cleveland Clinic saying they had a matching Kidney for me, but. Turned out that I did not get the Kidney but the three hours of suspense were a Satori in my regular routine. In the seven plus years I have been on the waiting list, I have got exactly none of those "we have a Kidney for you" calls. So while exciting it also forced me to take a breath and take it all in as best I could. When I found out I was not to get the Kidney, I was disappointed, but not sad. Just shaken by how it could really ( and will) change in a few moments someday.

It is really not a question of a better quality of life or the relief of suffering, I truly do not feel that is at stake here. Rather a new journey and challenge. Like anything new it is exciting, and little frightening at the same time. I've learned that expectations do not in any way make the reality of what is any thing but what it should be. In other words, expect nothing, and all will be open to you.

Time again for apologies, but don't feel there are any hard and fast rules on when and how I should post on my own blog. However, I do feel a sense of "courtesy" should force upon me the necessity of posting more often than I do.

I am currently well. Just went through treatment for a "staph" infection. The precautions make it far more serious than my actual suffering was. Im home from the hospital and back to my regular schedule of kids, cleaning, running, and loving; wife kids cats. I have really tried recently to shake it all up with some new goals in the short and long term. I do, and can readily admit, that I have a hard time with staying put in my life and routines. I have learned and worked a great deal on the focus of what is and what I can and do have control over... which is in fact almost nothing, except for my response to things. It can and is freeing.

I came out of the hospital the other day to the same from my precious kitten who just came home from being spayed. We are a pair. She and i seemed to feel the bond of "just glad to be home".

Home is a good thing and a place where you can rest it all away.