Lifelink called and said it's "official"

Bruce's donor is approved and he will get a new kidney! Even typing the words seems like a fantasy. I have not had any time to process this yet. We are both so busy then we stop for a moment and think about what is going to happen and still can't believe it's real. I wanted to have an official date before I posted but Lifelink hasn't scheduled it yet. The donor is calling them with the date of January 14th. He already tried for the 7th and they were booked. I haven't mentioned his name or how we know him yet because I didn't want to pressure him in any way. His name is Ken and he is the best friend of Bruce's cousin Tony. We were friends with him when we lived in Tampa. Ken and Tony lived in Orlando and they would visit us, but we have not seen him in about 8 years. So for anyone reading this looking for donors, this is proof you never know who might decide to be tested and turn out to be the one saving your life. I just want everyone to know that this is the most amazing gift and he is an angel to us.

Also this week- Our thoughts are with Bruce's brother Sean. He is having a Nephrectomy tomorrow at Vanderbilt. He got his port put in today for the hemo-dialysis just like Bruce has in his collar bone area. He will recover and be on the dialysis with no kidneys (unless they decide to leave one in) for one month and then hopefully he will be ready to have the transplant from his donor at the end of December. It seems a bit quick because I know what 4 weeks post Nephrectomy is like. It could possibly be put off a bit longer maybe into January. Which would be such a STRANGE occurrence to have both brothers getting a transplant from a live donor right about the same time! PKD is so unpredictable. One could live their whole life without needing dialysis or transplant but Bruce and Sean both started going downhill within months of each other. Sean and Mary have 2 children who are old enough to know what is happening and it is going to be hard on them to see their dad in this condition for the next few months. It breaks my heart because I know the look of worry and concern on their sweet faces.

I had a conversation with Beck about Sean tonight and he was upset that his cousins would have a bad holiday with their dad going through this. I told him to be thankful we will have a good holiday and something hopeful to look forward to for the new year. Daddy will be like a normal person again. He said, "I don't know that Dad". As if he can't remember a dad that wasn't really sick. I reminded him of times a few years ago that I know he remembers but I am now realizing that to him this must seem to go on forever. I am so happy there seems to be an end to this horrible chapter. And it's all thanks to Ken!


Weekly update

It seems like at least 2 weeks since I typed anything here. I never get the time for anything anymore. I know I used to say that many years ago after having children, but the past year has taught me I had no idea of what a chaotic life really can feel like.

Bruce had bad headaches that were not addressed by dialysis center. I know I did posts on this before and thought something should be done so of course they got worse and he had to come home from work one day. For at least a week, he spent most of his days trying to get rid of them- at least 2 a day every day. Finally they told him he should make an appointment with Dr. Russo the nephrologist. He tried that but it was going to be in 11 days and in Naples- 30 min drive so that takes hours out of my day. We got him in to see the Neurologist who treated him regarding the seizures (and who treats me for migraines). He was very thorough about all the possibilities and ruled out many causes. He told him to cut the Keppra (anti-seizure pill) in half and see what happens. He warned this was a risk of seizure but wanted to see if that is the cause, then he could put him on different one. It seemed to work instantly. The next day- NO headache. He has made it 3 days now and no headaches like before.

Transplant news: the donor has to do a test this weekend wearing a blood pressure monitor for days and mailing it back to Lifelink. Then on Nov. 18 this will go before the committee for approval. They will then discuss with the donor possible dates that work for him for transplant. The coordinator told Bruce that with the holidays it will probably be in January. He told her about his problem with the port he has and she just said he should talk to his dr. about that and she thought he would be fine. So that means this is not going to actually be brought to anyone's attention there who matters. I am going to try to remember to get Dr. Russo to write letter before Nov. 18 to them stating that he needs this port out sooner than later and they need to consider that in their planning.

It is not sinking in yet that he could get a transplant. It is SUCH a huge deal that it is hard to think it's real. Right now we are so focused on simply getting through the days and trying to keep him out of the hospital there isn't much time to dwell on it. Bruce is too scared to get hopeful and I understand so I don't really talk about it.

I am so grateful for any help we get. Last week a pipe burst into a water fountain in the front yard from our sprinkler system. I had to rely on my dad, my neighbor, and my landscape person to come to my rescue and get our water back on in the house. Bruce still gets rides to work every day and rides to and from dialysis from Keith, Rob, and my dad- I know it's probably getting old for them to do this for us. I hope we actually have an end in site!