still still here...........

Yep it's Mon April 27 according to my phone and i'm still a resident of Lake Norman Regional Hospital. We've become quite the regulars and been through all the nurse rotations.

I think every one is still holding on strong. The girls are being spoiled rotten by friends and family. They actually went swimming yesterday with the dogs. Under daddy's supervision:-) It was great for them all to have a little fun!

I had dialysis and blood work again today. Made it through 2hrs 25min before getting sick. Creatine is still in the 6's and hemoglobin 7.8. Other than that everything looks normal. I am not making red blood cells. A condition they are calling red cell aplasia. My bone marrow is not making just the red cells. Every thing else looks good. There are about 40 causes, with 2 really standing out. I've been on Cellcept for @ 3 years and that can cause this. Thanks to a friend of mine that just went through something similar, they are testing for b19 virus which can also cause this. I'm really hoping for something easy here. If things don't improve in the next week they want to do a bone marrow test to rule other things out.

Back to dialysis....I'm still getting sick. We've decided to try peritoneal dialysis (PD) so I'm getting a catheter put in tomorrow. I've been poked and prodded so much whats once more while we're hear.:-)

No definite on a check out date but I'm thinking Wednesday (this week).

Well getting ready to get a pint of blood........yea it looks as disgusting as it sounds, but we do what we have to do:-)

Still here

Well it's Thursday, I think, and I'm still hanging out at the hospital. Today was a dialysis free day! First one since last Saturday. I'm starting to feel a little better. I had a headache when I woke up this morning, but after some pain medicine and a shower I feel a little more human.

We are still not sure when I'm going home. The doctors (and us) want to be 100% sure I'm stable enough to go home. I think Chris and I are spoiled to the 'room service' and being able to have medicine injected into an IV at a moments notice. We will know more tomorrow after the dialysis run.

So far I'm reacting with our current donors. CMC is continuing to work all angles and processing all those interested in donating as quick as they can. We continue to pray for a donor.
Anyone still interested in donating can contact CMC at 704-355-6649 or 800-562-5752

Thank you for all the prayers and well wishes.

Dialysis beins......

Well it's been a while, things have been going along. Met with CMC in March, we are officially on the Transplant wait list. My brother is not a match for me, but he is still a donor candidate. They are continueing to test him to see if he can donate to someone else. Maybe we can make a 4 way donor swap and help save someone else! We have friends continueing to get tested and we are beyond grateful for everyone!
Tuesday (April 14th) I had a routine nephologist appoitment. I was not feeling well because my hemo was low. Lab work was done. By Thursday (April 16) doc was calling. It was time to start dialysis. My kidney function was about 6%. As most of you know, we'd been trying to hold off until my arm was really ready. We couldnt wait any longer. The toxins were too high and my numbers were not good. We decided to go to hosipital on Friday for in-patient dialysis thinking the nurses were top notch. Our plan was to be there Friday/Saturday then come home. Well as my 5 year old often reminds me, I don't do good sticking to a plan. LOL It's Monday and I'm still hanging out.
So back to Friday, we checked in Friday morning. Lunch time they came and got me for dialysis. The best dialysis nurses around tried for an hour to use my AV Fistula. Chris stood by my side letting me cut the circulation in his hand off squeezing because it hurt. My arm was not ready for the blood flow. IT HURT. It's not like the movies they show you. lol. So next step was to get a cathader put in my neck to start dialysis that way. It is temporary, we will still be able to use the arm, but for now the catherder is the best option.
So on to Saturday. All I remember is trying dialysis, getting sick. Taking meds and getting sick and sleeping.
Sunday was a bit better. Tried dialysis, was able to run for about 1.5 hrs before feeling sick and stopping. Was able to walk around and did not get sick all day. Stayed awake most of the day.
So now it's Monday. Went to dialysis this morning. Felt ok for a while. Ran for 1.5 hrs, started getting a head ache and vomiting so they stopped it. I felt better after that. Came back to the room where Chris helped me shower and wash my hair. That was great. Feeling light headed but not really sick to my stomach. Still can't eat much. Drinking some Nepro by Ensure for vitamins and calories.
Not clear on what comes next. Obviously we'll be doing dialysis 3 days a week now. I'm not sure when I'll get to go home. We're thinking Tuesday or Wednesday. Thanks for all the prayers, well wishes, visits and flowers. We need all the support we can get and everyone has been wonderful.
I apologize for all the typos and misspellings, still not thinking clearly:-)