Yesterday was a hoot and a half, but boy! it wore me down. Of course, that and the vast that I woke up at 4am and couldn't go back to sleep. That probably helped me along. Rather than wake John, I unhooked from dialysis and just finished manually when it was time. Thank goodness for Mary! She awarded us a 6 month Netflix membership and we are loving every minute of it!
I didn't think I could take one more BUY! IT! NOW! infomercial this morning.
We made the drive down to the Infusion unit, about an hour or so away, for my first infusion appointment. I'm hoping this will start to boost my counts up so I'm feeling better more often. It took two nurses and three sticks to get the IV Started. Evidently, my veins are "going flat" from the constant poking around. We have two more approved IV sessions over the next two weeks, then we'll do blood work to see if it's helping. We're also going to talk to the Dr. about Procrit. The senior Infusion nurse mentioned they have some better luck with it over Epogen, so it's an option to look at. Right now, they have me dosing 70,000 units of Epo every week- the side effects and potential cardio concerns with that high a dose is a huge concern for us.
Some specific things that can be targeted for prayer would be appreciated so much :)
- I am beginning to have a decline in my vision. Dialysis, from what they say, can cause varying pressures in the eyes so it's not unexpected. However, it's really become an issue in the last month or so. I'm waiting to get in with an ophthalmologist in Phoenix. It requires a full day or travel, so we're trying to work out the details.
- Tingling and numbness in my feet has been more pronounced, and i moving into my ankles. This has been an ongoing issue since almost the beginning of dialysis, but has progressed to the point where I clobbered my foot the other day into a door edge, and didn't even feel pain. Just the pressure of the hit.
- Continued wisdom on the part of my medical team. I am still not confidant that the PD nurse is doing the right things. But, without getting her onboard, I can't make changes to my care. The last tests called for a drastic change in my prescription for dialysis, and I'm retaining much more fluid than before, and feeling crummier. When she gets back from vacation, I'm going to sit down and chat about re-doing the baseline tests again and double checking where we are at. Unfortunately, we have no other options for PD nurses, so I have to make this work. Period.
- Most importantly, please pray for my husband. My care, or lack thereof, is really taking it's toll on him.
Lastly, I know I promised pictures of our monsoon damage ... however, we had more storms today so I'm waiting til things clear up LOL.