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!


  1. That is great news about the donor! Is the donor unavailabe during the holidays or is that just a doctor thing. I know people including our donor thought that we might want to wait until after the holidays b/c we have kids. We told him we didn't care and that's how we are here. It might be worth a mention-some people assume that "you" don't want it during this time.

    Our kids will understand a more real version of Christmas this year and I think that is okay too-a blessing of sorts.

  2. that is good to hear about your donor! our donor goes on the 23rd for her final testing and the appt with the surgeon... and more bloodwork and chest xray then ct scan of her kidneys.. i'm so excited and hope she passes so we can move to the next step! can't wait to hear the outcome of the meeting on the 18th!!!!

  3. I am so hopeful for you with the potential donor. That would really save all of your lives and I can't believe it might happen and so soon. Praying hard for you now! I had to laugh at the part about not truly knowing chaos....I can't imagine having kids OR going through your crazy routine every day...I don't know chaos AT ALL! I will remember that whenever work or whatever seems overwhelming. XOXOXO

  4. Just remember, those who help out with transportation know that you would do it for them if they wwere in your shoes. Someday you can give back by helping someone else in need. Also, a positive thought could be that you have 2 months down & only 4 to go. If Bruce has surgery during that time, he wouldn't be driving anyway. Stay strong! Love, Mom