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Dialysis Day 84

I had a bit of an emotional breakdown in dialysis today. My Neph approached me today and asked how I was doing, and started to discuss my fistula. I told him that the plan was to do more fistulaplasty and eventually surgery, specifically opening the length of the fistula and inserting a graft. He told me it wasn’t done that way, and I told him what the radiologist told me, Dr. H said it wasn’t done that way, I said that I’m only repeating what was told to me, etc. I was getting aggravated, because I know what I was told; it may not have been correct, but it was what was told to me. He then said “hang in there, you’ll get a kidney soon”… Well, that was the wrong thing to say. I let it out at that point, and told him that I wasn’t too confident of that, he asked what was wrong…

I proceeded to tell him about getting a call and being the “primary”, the next time being the “backup”, and last weekend not GETTING a call for a kidney of my blood type. He got defensive, and assumed I was inferring wrongdoing in the selection process at our center; I wasn’t, I was inferring that something was going on at UNOS. He asked if I wanted someone from the Transplant Dept to come to talk to me, and I told him that I already tried that a couple of weeks ago and that my questions were not welcomed by the nurse calling me with a kidney offer. He realized how deep he was in at that point, and started making calls.

My transplant nurse was down promptly to talk to me, and explained as best he could, the UNOS process for selecting who gets calls. It seems that each time, you might be placed differently, and it is not only based on seniority on the list (they always seemed to stress that seniority is the key factor), but also on appropriate match with antigens, and the patient’s specific situation (makes sense to me).

They very well could have told me all of this at my first appointment in June 2005, but with all of the information presented, I obviously didn’t retain it all. Plus, it’s almost 3 years later.

I felt much better after the explanation. I did also bring up about the average wait time. It has changed since I started, and is now 3-4 years (it was 18 months when I started). When I asked the nurse about that several weeks back, she was very short with me, and gave me the attitude of “how dare you question me” and almost as though “be happy you’re on the list and don’t ask questions”. I’m told that it will be addressed, and I got the impression that it isn’t the first complaint they received about this person. Had she taken 5 minutes of time to answer my simple questions, this could have been avoided. I think that with all that has gone on this week, it just snowballed on me. But, I feel much better about it.

The one thing that I’ve observed is that everyone has a different opinion on what a particular problem is, and it gets very confusing to the patient. For example; the radiologist feels confident that the rash is not IV dye related, because it occurred so far out (40 hours) from when it was given; the nephrologist said it COULD be the dye. The family practitioner said it could be a drug or viral rash, and referred me to the dermatologist (I guess so that I could get even MORE confused). Not really; I know that there will probably not BE an answer to this, but it gets nerve wracking.

My arm is even more bruised today; pic below. It still hurts, but not as much as yesterday.

My BP is still low, so he upped my dry weight again to 92.5 kg. I gained quite a bit of weight this time, probably due to taking Atarax, and my mouth being so damned dry. I still have the rash, but will try without Atarax tonight.

Beginning wt: 96.4 kg. End wt: 92.3 kg.

Hematoma about 52 hours out. The bandaids are over the insertion sites for my dialysis needles from today; they made sure to not go near the hematoma (thankfully).

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