Friday, October 23, 2009


Yep, I'm doin the happy dance! Got a text message from the potential donor telling me she had too much to text and to call her!!!! Oh my gosh, I was so nervous as the phone was ringing! But it all worked out because she passed the latest test and was scheduled for her all day appointment with the lab, nurse and surgeon!!!! She'll get all the final testing completed at this appointment... chest xray, blood work and I think sent for a CT Scan of her kidneys!!! Her appointment is right before Thanksgiving!!!!! We're soooo excited and so relieved that she's moving on to the next step! I just hate that it's so far away! It seemed like I wished away time for it to be Oct 15th (Neil's appt) and now I have another month to wait.. I hate waiting for stuff like this!

Neil had his first transplant dream last night... he said it was weird.. he said he woke up and they still had a tube in his throat. I think the anxiety is setting in after seeing the surgeon. He told him 2 things that kind of freaked him out.. he'll have a catheter for a few days post surgery and he'll have a main port, I think they called it.. I think that's for dialysis if there's complications but I'm not sure. I suppose I ought to read up on that.. all Neil said was that he hopes both of those are put in after he's asleep! I hope he doesn't start having a lot of dreams about the surgery... I guess that's normal but I know how dreaming about stuff can sometimes make it worse!

All the boys are better, by the way.. thank goodness because I was getting sick of everyone being sick! And thankfully Neil didn't catch any of it! I guess his immune system is better than we thought!

I probably won't update much till next month because there's really not much else going on! We have done everything we need to do.. we just need to wait for the donor's appointment and then go from there! Pray for patience for me.... I'm going to need it! :)


  1. That's great news. I understand the "waiting" game. Love the cartoon and dancing friend.

  2. It is exciting. He will come out of surgery with the catheter. They will want to measure new urine output to make sure the kidney is working. It's taken out by a nurse in a very intense procedure after several days. The main port is placed between the collar bone and shoulder. It is surgically placed and removed, but dialysis cannot be done without an access. Fistulas take 5 or 6 months to mature.

  3. thanks david.. so the main port is for dialysis before/during/after surgery??? and will he be asleep or awake during the surgery for the port?

  4. Well I can say from experience that there will be lots of dreams. As I get closer to my surgery date, I can't stop thinking about it. I don't sleep very good as of late and somedays I feel like I am going crazy because I am so worried about everything. It gets to the point I am afraid to talk to anyone about it because I don't want them to roll their eyes and think "there he goes complaining again". I too, want to be asleep when they put the port in but we were just informed that it will be put in the day before surgery. Great.

    Please don't get me wrong. I am thrilled that I have a donor and in a few months this will all be over. I'm just worried about the whole thing.

  5. wonderful news! we are in the same situation...waiting to hear.

    The main port for dialysis is nothing to be freaked out about I promise! Bruce had a PD catheter in his side and that was much more severe. He currently has the main port you are referring to. It was put in during the nephrectomy surgery. It looks like a more complicated IV. Nothing more. No pain from it at all. They will use if for dialysis and it gets hooked up kind of like an IV would. It is considered temporary so it can become infected if left in for long periods of time but that won't be your situation. Bruce has had it since July 31 and they are ready to take it out now but we are waiting to hear if he will get a kidney. So time is of the essence or he will need another PD catheter. The word "port" makes it seem large and scary I think.

    Bruce was so scared about the nephrectomy surgery he dreamed about it all the time. He ended up taking some mild anxiety med for a few weeks to help.