july 7th update

Once again, I've neglected updating. I came home from the hospital April 29th and started hemodialysis at the center May 1st. My arm still wasn't ready to handle 2 needles at the center so we've been using both my arm and the chest catheter I have.
We were anticipating a transplant the middle of June, but my body wasn't ready to handle another surgery evidently. I reacted with my potential donor. We are praying that it was just because of the virus I had in the hospital and the trauma of being in the hospital. The transplant center wants to retest me and my donor in August, giving my body time to 'calm down' a little.
So with the transplant not happening as soon as we'd hoped I decided to start doing peritoneal dialysis. This type of dialysis uses my abdominal cavity and a solution to filter my blood while I sleep. I am hopeful it will also be easier on my body. Hemodialysis is starting to get tougher each treatment. The process itself isn't so bad, but I feel very run down the day I have the treatment. So on the days I don't have treatment I have to be in overdrive to get everything done. It is exhausting for sure. I've been told PD (peritoneal dialysis) is easier on the body, so we'll see.
I started day 1 of 4 for PD training today. It's a little overwhelming but should be pretty easy. It's a matter of consistency and organization. Definitely something I need to work on in my life anyway. lol
I'll try to update more often. It's kind of like the old saying, No news is good news.

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:-)

Yay! It's working

I had the 2nd AV Fistula done on Wednesday, the 11th. Everything went well. Not much pain at all.
I can feel the pulse and the blood flowing through its 'new' route. It is very exciting and I feel very good. I have not had to take much pain medicine.

The bandage comes off today, so we'll see what it looks like. The incision is bigger this time, but as long as it works I'm happy!

Also, my labs were just a bit different than 2 weeks ago. The creatine was at 6.7 vs 6.1, Potassium was down to 4.5 (i think) vs 5.9 (lower the better on this, so its good news), BUN was 83 (i think).
I'll go next week to have my doctor do labs so she can compare to the past labs done there.

My brother is in the process of getting tested to be a donor. Hopefully we'll find out something soon with him.

much love

have to go back for round 2.......

WELL................................
unfortunately my neighbor was right. I went to the doctor yesterday because I couldn't feel the 'thrill or buzz' and sure enough, nothing was going on in my arm. Meaning blood was not flowing through like it should, so it must have 'clotted' off because the vein was too small. The good thing is it has not affected blood circulation. So I'm going back to the OR on Wednesday the 11th at 9:30 to have him do it again. This time he will move further up my arm where the veins are a bit larger. Before you ask Eddie, we really thought it would work. They tend to start at the lower part of your arm then work up if they have too. At least we know what to expect this time so hopefully everything will run smoothly.

AV Fistula

this is going to be short because it hurts to type still. i went in 4 days ago for the AV Fistula. Everything is going well. Had some bruising and minor pain. Still numb in parts of my arm which is good I'm thinking:-) Can't feel the 'buzz or thrill' they talk about over the incision, but hoping everything is ok with it. Feeling good, been nauseous over the weekend, but I'm thinking its from not eating enough.
Found out in the hospital, my labs are getting worse. Currently showing 8% kidney function. Potassium is up to 5.9 , creatine is 6.1 and BUN is 69. All numbers indicate dialysis is coming soon. I'm trying to hold on and let the fistula heal, but not going to wait so long I get too sick. We're just trying to buy some time at this point.

Thanks for the prayers and well wishes. Chris probably needs them as much or more than I do. He is doing wonderful at taking care of me, but I'm sure he's a lot more worried. The girls are also doing great taking care of mommy, but are equally worried I'm sure.

Our day at CMC

Monday was a very exciting and busy day! We met with one of the Transplant surgeons at Carolina Medical Center. From there I had a chest x-ray, EKG and blood typing lab work done. Every thing went well but the lab work sucked! They had to 'stick' me twice to get 2 different readings to confirm my blood type. I am A+ but they seem to what to be sure. lol

The surgeon seemed to think IF we had a living donor that was a match I could have a transplant sometime in the next 6-8 months. He said there was really no reason things should not move quickly seeing I was pretty healthy otherwise. I am certainly not counting on that, but it would be a nice surprise. Chris is not a donor candidate at this point because of the girls and needing to take care of me (this was our thought the whole time).

The gentleman doing my chest x-ray was a kidney recipient. It was very cool to speak with him. He was probably my age, and doing great. He received his kidney from a deceased donor after waiting 1.5 yrs. He said he could not believe how much better he felt after the surgery. He had also done Hemo dialysis (we're planning this for a backup) and said it was kind of painful. However, he gave me a few pointers on why he thought his was not pleasant. It was very encouraging speaking to someone my age that has been through the whole process.

It is exciting but I think things are going to move quickly at this point. It would certainly be a blessing if 2009 was the year of the "kidney". lol Chris tells me his going to start calling me 'kidney bean', I'm think a flower garden in the shape of a kidney would be a nice touch:-)

Thanks again for all your encouraging words and support. We are truely greatful to have such a great support group.

Donar Form page 1 and Donor Form page 2 for any one interested or with quesitons.

Happy Friday!!!!!!

YAY! I finally have an appointment at Carlina's Medical Center in Charlotte to start the process of getting in the Transplant Program! I am so excited! I was referred in October, and after many phone calls from my doctor I have an appointment on Monday the 12th!

They are going to do some lab work and x-rays. They also will be able to start testing some of the willing Donors we have, once I am officially in their system.

This is a very exciting Friday!