- Good news! I had a bone marrow biopsy last Tuesday (ouch) that showed NO RESIDUAL DISEASE!!! Praise God!
- We can move forward with transplant as soon the dialysis graft in my arm proves to be working, and I can get my femoral catheter removed. I need to redo a whole bunch of appointments as a pre-transplant workup. These include meeting with the radiation folks, getting another heart scan, getting lungs tested, meeting with the psychologist, meeting with the social worker… and probably other things I’m forgetting. We’re looking at an admission date of last week of May, or first week of June.
- We are now doing home dialysis! It’s been a huge quality of life improvement. It’s great not having to go to the depressing dialysis center any more, and being able to do it at whatever time of day suits us best. The other upside is that we’re doing it four times a week instead of three, which means I never have a two day stretch without it. More frequency is a huge bonus when it comes to fluid removal. I can drink more freely and not have to worry about the fluid building up as much. This in turn results in more energy after dialysis since there’s not as big of a volume swing.
- For the first time in 15 months (with the exception of a two week stretch when the kiddos went to Columbus with Mike’s parents last summer) we don’t have anyone staying with us. Up till now, our loving families have stepped in to help with childcare and managing the household while Mike and I are tied up with hospital stays and appointments. We have loved getting to spend time with family, but at the same time, it’s very nice having the house to ourselves!
- I just spent a week in the hospital for a post-op cellulitis infection. I got the dialysis graft placed in my left upper arm about two weeks ago, and at first it was painful, but fine. Three days after the operation it started becoming red, itchy, and the pain was going up. The next day it was more swollen and red. The day after that I called the vascular doctor and got sent to the ER. I got admitted and put on antibiotics. Thankfully after a few days the pain and welling started going down. It wasn’t easy being in the hospital again. I’ve had so much pain and distress in the hospital, it was hard not breaking down and panicking. I guess I have hospital PTSD. My solution? Sleep. Talk on the phone. Pray. Smell essential oils. Watch America’s Next Top Model- a guilty pleasure.
- I’m not sure if I’ve talked about this before, but ever since kidney failure I have restless legs. It sounds trivial and maybe even silly, but it’s a real problem. Anyone who’s had them will tell you it’s NO FUN. The feeling is like an itch in your bones… mixed with an overwhelming claustrophobia, where the tight spot is holding still. It’s particularly bad in my right leg, and often times it starts the moment I wake up and keeps me awake at night. I’ve tried different medications or it, but nothing really worked until I had a to take pain meds after surgery. For the first time in a year I went a whole day without my leg getting wild. It was such a nice feeling to be able to hold still.
Things that are fun…
My sisters and I sometimes refer to my transplant as The Tranny. Logically, it made sense that we should prepare for transplant by practicing our transvestite make up skills – pretending to be men who’re pretending to be women. We made a phone date out of it one unforgettable evening. As you can see, the results are stunning.