HIT & Run

So for over two months I've been on dialysis and have had at least four different episodes of unstoppable bleeding. These events have all fallen on the evenings following dialysis. To me it was obvious right away that there was a connection between dialysis and the bleeding. The most recent event happened almost two weeks ago on a Monday following dialysis. Now that they're using my fistula for dialysis it means that each session leaves me with two new puncture wounds to my left arm. On that night one of the two would not stop bleeding and I spent 12 hours in two different emergency rooms trying to get it to stop.

I've really only had 5 sessions where they've used the fistula because the blowout on my second day caused me to lose a week of use and then the episode of bleeding almost two weeks ago has again forced me to lose a couple weeks of use.

On the Wednesday following the last bleeding event my nephrologist, the manager of the dialysis unit and I sat down and discussed the problem. They finally were hearing me and believing me that there was a connection between my dialysis and the bleeding events.

I had suspected that some of the technicians were not paying attention to the special instructions for my case that included no heparin. I assumed on the evenings where I had bleeding events that someone had accidentally given me some heparin. Heparin is an anti-coagulant and I'm not sure why but its often used in the dialysis process. After my first couple of bleeding events it was decided that I would not get heparin during my dialysis sessions.

However... there is a need to fill the chambers of my catheter between sessions with a solution that prevents the catheter from getting blocked and they do this by adding saline with 5000 parts per million of heparin. The amount they add is based on the volume my catheter holds when not in use, which turns out to be 22 Ml & 24 Ml (there's an inny and an outty, two chambers). They also make a solution that is 1000 parts per million of heparin and at first it was decided that my catheter would be filled with that solution instead of the 5000 parts per million version.

But it was also decided that they needed to do a special blood test that they don't normally do. An order was placed and on the Friday following the bleeding event they took the blood sample and ran the test. On the following Monday, this past Monday, they let me know that there suspicions were confirmed. I had Heparin-induced thrombocytopenia (HIT). Basically its like being allergic to heparin... for lack of a better way to describe it.

For me... heparin not only helps reduce clotting it drops my platelet counts to ridiculously low levels. So even though I was only getting 5000 parts per million added to the chamber of my catheter, if the technician was over by even half a milliliter then that half a milliliter got into my system and wiped out my ability to scab over and stop the bleeding.

I'm officially off the heparin now even in the chambers of my catheter. They'll take another sample of my blood this Monday and test it to make sure my platelet count is back up to at least 140, then they'll put me back on the fistula. Nothing is ever simple... but its certainly always interesting.

My name is Bil... and I have kidney disease.

Another Day

It's been a couple of weeks since I sat down to write a post. Not for lack of anything to write about, but more because I've just found it hard to find time to sit and write. Life feels very busy at the moment. My project at work has been demanding of my time and with dialysis eating into my weekdays its harder to hit my schedules.

So what has gone down over the last couple of weeks in the world of my kidney disease?

1. Finally was officially added to the list at MGH.

2. My fistula blow out recovered and we started using that instead of my catheter.

3. This past week I had a bleeding issue after one of my dialysis sessions and I ended up spending 12 hours in two different E.R.s resolving the issue.

4. My body bruises now so easily that I'm covered 3" diameter bruises on my arms and legs.

5. MGH has started the process of working up the next potential donor.

6. My dialysis center is trying to figure out why I keep having these bleeding episodes.

So which of these are worthy of writing about? I could use this opportunity to remind anyone who wants to volunteer to be a kidney donor on my behalf that they will need to contact MGH directly to get that process started. If you contacted Lahey while I was under their care that no longer counts... it has to be through MGH. The number if you are interested is 617-643-7193.

I could tell you all about the person being worked up by MGH... but I'd prefer to just let that all run through until they find an actual donor... and then at that point, if I had that persons permission I would write about him or her. For now it should be enough to know that I'm so appreciative of those who have stepped up. I know this is no small favor I ask and that you would be willing to do this for me... well no words could ever truly capture what it means to me.

I could tell you about my bleeding episode but really I've told that story before... haven't I? Do you really want to hear it again? And until my dialysis center resolves the problem with the bleeding episodes I can't say much about that.

What more can I say about the bruising... it happens. I have to wear a blood pressure cuff throughout my dialysis treatments and I believe even just wearing that cuff has caused bruising.

Well that's all I've got really.

My name is Bil... and I have kidney disease.