I am going to step away from the timeline of how I got to today and give a current sitrep. I will return to that eventful Thursday later.
There is a frost predicted for Sunday night so there are things that needed to be done in thegarden. I have a helper coming in Monday but that will be too late so I dragged myself off the couch and figured I would at least make an attempt and if the best I had wasn’t enough then at least I would have tried.
I was pleasantly surprised to find that I had about two hours of light physical work in me, something I hadn’t been able to do for almost three weeks. Between being swollen with ascites, having pneumonia and not being able to eat for 5 days, physicality had been challenging.
I was able to harvest some tomatoes and bitter melon and cover my cucumbers (which were a late planting and still cranking), sweet potatoes, fig, a few tomatoes that aren’t completely blighted yet, and my peppers to protect them from frost. If you dodge the first frost you can typically get another couple of weeks of production from some things so worth covering. Winter squash isn’t going to do anything in the coolness anyway so I let them go, picking the fruit.
I had been advised that I would feel better after starting dialysis but while I was certainly better than when I was laying in the hospital I had been dragging my a– and not feeling like I wanted to take anything on.
The orientation booklet the dialysis center gave me said that while people do drive themselves you should make arrangements to be driven for at least the first two weeks as you don’t know how your body is going to adjust and it does take a while, different people react differently. My community has come together to help with the 30 minute one way drive. There are lots of volunteers to take me so all the weight doesn’t fall on Vidya.
Bhakta Mike drove me the second trip to the center. As I was walking out to the car after I was trying to evaluate whether I could have driven myself. I was exhausted but felt in a pinch I could have. However, as we drove away a wave of intense emotion flooded over me and I started sobbing. It passed fairly quickly but had I been driving it would have been bad.
I couldn’t tell if it was my false ego lamenting at the loss of my freedom or joy at having the opportunity to continue to live and work on the Madhuban project, but it was aliveness. In any case, one reaction I seem to be having is a hormonal imbalance so I can see why they said have a driver.
When you do dialysis they pump all your blood through a filter. The kidneys are a filter that balances electrolytes and removes toxins. If they don’t function your body poisons itself.
This is what happened to Srila Prabhupada who left his body due to kidney failure. He didn’t have access to dialysis. As he noted, he was being poisoned.
The other thing the kidneys do is make erythropoietin which is a hormone essential for production of red blood cells. Oxygen is carried to the muscles by red blood cells. As they die off and don’t get replaced you become anemic and tired all the time. I have been there for a while, and it had gotten bad enough that the doctors had prescribed Epocrit for me. Epocrit is the man made equivalent and it stimulates red blood cell production. It is monitored by blood testing of hemoglobin levels. I was told once I started dialysis the level would be monitored by the staff and they would administer the Epocrit.
FYI, Epocrit is something athletes use because with more red blood cells they have greater endurance. That is called blood doping.
My level had been managed to be between 10 and 12. A normal healthy male will have a level of over 13 but because of side effects they don’t target that. The second time I was at the center I had heard them say my level was 8 so I assumed they had supplemented it.
The third time I there, the most recent, I saw that at one point they shot something into the IV and asked what it was. I was told Epocrit, so to that point I still hadn’t gotten it. That was yesterday and because I felt better to work for a while it must have started kicking in.
That is a little enlivening because prior to that I thought they had already given it me and where I was energywise was where I would be, but knowing they hadn’t given me any before I have hope I may get stronger still.
When you finish dialysis, 300 ml of blood remains in the tubing, 900 ml = a quart. Which means every week you leave a quart of blood behind. That is the cost of admission to the world of dialysis.
So I had given a quart of blood in my first three sessions and gotten no erythropoietin to replace it. Now that they have started to administer it, I hope I can have more days like I had, or maybe even better days,
When I went to the ER initially with the shortness of breath, I weighed 170 lbs (77 k). During the week I continued to accumulate fluid and got to 172. They take fluid off at dialysis and then I gain some back between. Each time they take a little more off then I have gained back. After the last session I was 152 lbs (69 k).
They say I still have more fluid to lose and they still have not determined my dry weight. They can only take off a little more each session because they say if they take too much off it can be bad.
Breathing is no longer an issue and it is easier walking around being 18 lbs (8 k) lighter. If I can get my energy levels up I may even stop resenting dialysis.