Starting Weight: 100.2 Kg
Ending Weight: 97.7 Kg
Water Removed: 2.50 Kg
Start BP: 180/100 End BP: 174/89
While I realize this sampling of my pre and post dialysis weights is limited, I thought to include the brief monthly numbers anyhow to illustrate the new dry weight I am shooting for...97.7 Kg. My ongoing efforts to lower my BP are leading me dry weight ever lower once again. I am doing this so that I can [hopefully] avoid having to start back up on any BP meds. Ever since my BP began to inexplicably rise again, my weight has continued to decline. The dialysis machine's BP readings have a tendency to be higher than any readings done by hand, so the true numbers are actually lower than what we see.
In this game of BP numbers versus keeping my graft open, I must tread lightly to keep from having another central line inserted ahead of my impending transplant.
Speaking of transplant, I received another call from my transplant team offering what is called a "high-risk" acceptance for possible transplant. In this case, the donor has previously had an outbreak of Hepatitis C. The high risk aspect is that as a recipient, I would be vulnerable to contracting Hep C, should I come in contact with the disease. While there is no guarantee that, as the recipient, I would or would not contract Hepatitis, the likelihood of successful treatment of Hep C is about 95%.
The transplant team member talked with me thoroughly about the organ, and I then had to speak with my wife about whether or not to accept the possibly offer.
My dad had contracted Hepatitis C when I was about eight years old. He was healthy at the time, and it knocked him for a serious loop for months; which I had to consider in my decision.
So, partly out of fear (which I openly admit), and partly because I want as healthy of a kidney as possible, I called the team member and politely declined the possible offer. She completely understood my position, and thanked me for considering the offer.
Over the past couple of months my body had been deciding to put almost all my water weight gain underneath my diaphragm. While most days this doesn't bother me, on my Monday's this makes my breathing difficult, and lends itself to also making me extremely nauseated. There is absolutely nothing I can do to make to water go elsewhere
in my body, so sleeping becomes an issue whether I am laying down, or in a semi-recumbent position. So, I have been trying various positions to sleep in and have found that sitting on a couch with my feet on the floor, and my head supported from behind is the best position for me to sleep. This keeps my airway as open as possible, even though I get a bit uncomfortable. Plus, when my breathing is hampered, I must be pretty much exhausted in order for me to be able to sleep despite the DiB (Difficulty in Breathing). This is not ideal by any stretch, but at least I can get a few hours of rest before heading into my Tuesday dialysis.
Once on treatment, I can actually feel the tightness across my diaphragm decrease after only twenty minutes, or so, and I can once again breathe without any difficulty or discomfort, and sleeping is also no longer a problem.
My appetite has been up and down. Right now, I am eating just one decent meal per day, and snack the rest of the day. I just don't want more than that right now.
As far as sleep, I am getting about 15 total hours around each dialysis session...down from about 21 hours just a few weeks ago. I attribute this to a increased feeling of loss of control as I continue to feel blah most of the time, and I feel worse on my weekend than I did previously. I fight this feeling with keeping my brain active and distracted, and through mental discipline and prayer. Sometimes my efforts pay off with good and increased sleep, and other times, not so much. The closer I get to transplant the more opposition I feel in trying to get enough sleep, which lessens my ability to stay strong, focused and able to rise above frustration. This isn't a coincidence.
My great challenge right now is to keep doing what I can to prepare myself for the impending transplant, and to keep my mind in a strong, positive place. When you are increasingly tired, that become more and more difficult.
The headaches are better, overall. Some days are much worse, and others are so good that I take only Excedrin, or nothing at all. This indicates that I will once again get my TMD headaches under complete control once I have the new kidney.
My energy level is, alongside my decreased appetite, down, as well. IF I can eat more, my energy rises a bit. In order to do that I must actually want to eat more. With so many things either forbidden by the renal diet, or just plain unappetizing, eating more will be quite difficult. I just remember the people and doctors I've spoken with who all say that once a kidney is implanted, that food will once again taste good and the appetite will increase dramatically. (THAT will be awesome!!) On a side note, my wife and I were given a gift certificate to a really nice restaurant that we are saving until after I am healed from the transplant surgery. To use it before then would just be a waste on my part as I would eat very little, and probably end up feeling lousy at the dinner itself. So, we wait so that the food is appreciated and enjoyed!
I think that that is about all I have for you today.
My transplant grows ever closer, and should be very soon. Even after I get my kidney, keep reading my blog as I talk about the long physical rehab ahead of me, and about how my body adjusts to the anti-rejection meds, how I am doing in general, etc.
This journey is still far from over, and I have much yet to experience, and to discuss once the transplant has happened.
Until next time...
Good Health to All!
ScottW
