Update Time

[JScott1753]

  Hello, everyone--
  It's been a long time since my last message, so it's time for an update!
  My "straight-line" graft from last June has been working beautifully. The last time they checked my flow with the Transonic, it was up to 760ml/min., which is great for me. My natural fistula, before "we" discontinued its use, was measured at a whopping 75ml/min. There have been a few trips to get it unclogged, but the last month or two, there have been no problems. By the way, at one of the de-clogging sessions, I was unfortunate enough to undergo what's called an angiojet. NEVER AGAIN! During one of the "shots" the nurse watching my b.p. had to yell at them to stop because my pressure was either bottoming out or skyrocketing. After a short rest, they ran it one more time, but that was one of the most uncomfortable experiences of my life. I'll take a non-anesthetized large angioplasty any time, but not that ever again. Fortunately, no clots recently.
  BTW, anyone end their dialysis sessions below their dry weight? In the last two months, it has been a regular occurrence for me to end up anywhere from .3 to 1.3 kilos below my dry weight, even if the machine has been set correctly. Believe me, since this started(funny thing being it only started after I underwent the angiojet), I have double checked the math. Dry weight overage+flush+rinseback(or whatever they call it) should result in my dry weight. I have the extra step since they don't give me heparin. Anyone else experience this?
  Now for the good news. Not *the* good news, but good enough for now.
  I have been in a long "fight" with the local transplant clinic about getting on their list. Every time I did what they wanted done, they came up with something else they wanted done. Or, they managed to bring up something new they never said before. I was really fed up, but my PA at my dialysis clinic said to hang in there, they were just making sure I was the kind of recipient they wanted--able to adapt to unexpected things. Well, I hung in there, and had an important meeting with the social worker, which, happily went extremely well. My case was presented to "the committee" the next Thursday.
  Last Friday they called me and said as soon as I talked to their financial people, and they double-checked some info with Medicare/MediCal, <TA-DA!!>I Will Be Going On Their Waiting List!!
  Funny thing is, instead of jumping up and down and yelling "YES!!", due to all the stuff I had been through with them, my reaction was"well, OK--what took you so long?"
  Anyway, I will be getting a letter from them sometime soon, presumably to say what the effective day is when I am on the list. As a result, I will be on two waiting lists.
  So, sorry to be so long. And, my thanks to Okarol for helping me with a login problem I had this weekend.
  Jon
 
 
 

[MooseMom]

Why do you have to be able to deal with "unexpected things" in order to get on the list?  ESRD/dialysis is "unexpected"...isn't that test enough?  This strikes me as absurd.  I think your social worker is just making this stuff up.

[Rerun]

Jon, what the transplant team doesn't tell you is that all these tests are done "ANNUALLY" and since it can take years....... it gets old.  I hope you get yours soon!

[paris]

You are so right, Rerun.  Like you JScott, a new test was added everytime I thought we were done. I think they really don't want you to know everything up front. It would be too overwhelming.   Now, I go through round 4 of renewal tests this month.  Once a year, around your anniversary date, they schedule another round of tests to make sure you are still healthy.  Again, meet with financial, social, and every other person who thinks they need to see you.  Sorry for sounding a little like Debbie Downer!       It will all be worth it for you, in the long run.  Like I use to tell my kids when they were in school, you just have to play the game.     Congratulations for making the "list"!  Now, the possibility can become a reality.   Good luck!