Dentally Speaking

Sorry now if this post is kinda gross... please don't read if you're easily skived out.

So I'm anemic as a result of my kidney disease... fairly common. Early on in my catheter days I had a few bleeding episodes that landed me in the emergency room over night. One thing I noticed is that it seemed to happen after dialysis sessions when they gave me heparin... an anti coagulant. So I mentioned it and we dropped the heparin from my routine.

Yesterday I had a long overdue dental cleaning prior to my dialysis. Although there was plenty of bleeding during the cleaning, I left there without any kind of significant bleeding. An hour later I was in dialysis and I'm not certain but I believe someone may have given me heparin yesterday.

Last night I brushed my teeth before going to bed. As you might expect following an intense dental cleaning... the brushing caused a little followup bleeding. Unfortunately the bleeding just never stopped. I tried to just ignore it and hope it would go away before waking up this morning... but instead it got so bad that I awoke around midnight with my pillow and face covered in blood.

I got up and cleaned up. Looked at my mouth and the blood was trying to clot. This led to little gelatinous blood pillows all over my mouth and wrapped around my teeth. It was.. gross.

I brushed my teeth again to try and clean it up but that started the bleeding again. I went back to bed but kept waking up every hour or so and returned to the bathroom to do a little more cleaning of blood pillows from my mouth.

This morning it appears to finally be returning to normal but I still had some follow up cleaning to do in some hard to reach places. Hopefully this will be the last of it... tough night when you can't get a full night of sleep and have to keep cleaning up blood from your face and mouth.

My name is Bil... and I have some weird shit that happens to me due to this kidney disease.

Bump in the road

The first fistula session went pretty well. Only one relatively small needle used in the arm. It really didn't hurt at all so my nervousness was unwarranted. I need three consecutive successful uses of my fistula with two needles before I can have the catheter removed.

My second fistula session didn't go quite as well as the first. The first needle went in pretty much the same as the first session... but the second needle missed its mark. Initially this led to the need to "adjust" it and that was less than fun. Then as they started to dialyze my blood the machine kept beeping. Something wasn't right. They kept trying to adjust the position of that needle and my arm to get a better result. Nothing worked. Then the technician touch my arm and asked me if that hurt? It did and I said yes. Then she started moving quickly and not speaking at all. She just went into serious mode and I could tell something wasn't right although I could only just sit there and wait to see what was going down. I knew better than to ask.. I was better off being dumb.

Within three to four minutes it was all over. I was no longer being dialyzed via the needles... but through my catheter instead. The needles were still there and an ice pack was resting over my arm and the technician said... "Let me explain what happened".

Basically a lump started to form adjacent to the second needle and the technician recognized this as some kind of problem and so she made the command decision to stop the process via the needles and get ice on it as soon as possible to prevent the lump from getting worse and to reduce the bruising that would follow.

So we'll try again on Monday and see how it goes. Meanwhile I've got this lovely bruised lump in my arm that I need to keep icing through the day.

Nervous

Monday of this week I was given the thumbs up on switching from my catheter to my fistula at dialysis. Today will be the first time we try the fistula. Now the way this stuff works is that there are two ports... one outty and one inny. Until now both of my ports are via the catheter, which has been surgically connected to the base of my neck or upper chest if you will. When the fistula is fully functioning it will mean that two needles will enter my arm on each dialysis day, but as we start the process today they will use just one needle as the outty and keep the catheter as the inny.

These needles are not as tiny as the needle used to draw blood at the blood lab. In fact they're quite large as you can see in this photo.

(click here to listen to the song running through my head today)

Today they'll use one of the "smaller" needles to start me out because we need to work up to the larger size and we're using just one for the same reason... we need to work up to two. I've been told these needles hurt. I've been given three options.

1. apply a cream to my arm about an hour before dialysis that will numb the area they insert the needle. For some reason they require you to then wrap your arm in plastic wrap afterwards... perhaps to prevent it from getting onto other parts of your skin and numbing those areas.
2. use a spray that numbs the area just before getting the needle. I'm told this hurts more than the needle.
3. suck it up... grin and bear it.

I'm not too keen on any of these solutions but for today I'm trying option three so I can judge the kind of pain we're talking about. 

I hate needles. I can't watch the needles being inserted when I have blood drawn. The idea of something entering my body just freaks me right out. Now knowing that I'm going to have a large diameter needle pierce my skin, I have to admit, has me a bit scared.

They tell me it will be about two more weeks at least before they can remove the catheter. The short term goal here is to do whatever needs to be done to get this catheter out of me. This is what I will focus on as I feel the pain of that needle puncturing my arm today and for the next few visits as they increase the size and the number of needles to two. Not sure I'll be able to use the grin and bear it method beyond today... the cream may be my eventual solution. But who in their right mind would choose the spray after they've been told it hurts more than the needles.

My name is Bil... and I'm nervous for the first time since this whole thing started.

parting will be such sweet fishy sorrow

So this week included my work up at MGH. Initially I thought it would include all the same testing I had on my full day work up at Lahey a few months ago. Most of which was nothing all that difficult, but for that darn stress test... that was not fun. As it turned out I only had to do half the blood work (11 vials) and none of the other tests. So the rest of the day was all listening to a lecture about kidney transplant and then meeting with the team at MGH one at a time, interview style.

It will be two weeks before I hear back as to whether or not I will be accepted as a patient at MGH. I have no reason to believe I won't be, after all... if Lahey would have me why wouldn't MGH, but there are formalities to it all and so I must wait for them to meet and discuss me as a patient.

I did learn a few new things at MGH. For example that they are doing some cutting edge stuff there that few others are doing. This includes an interesting approach to certain qualifying transplants involving half match siblings. Half match means that at least three of six antigens are identical. We all get six antigens from our parents, three from each parent. Siblings have something like a one in four chance of being a half match, but the likely hood that two non related people will be a half match is pretty low as there are literally thousands of antigens out there.

If your donor is a half match sibling MGH offers an option where they would not only transplant the kidney but would also transplant a small amount of the donors bone marrow. This some how eliminates the need for certain rejection medications. I don't know that my donor will be a sibling or that my sibling would be a willing participant in such an option, but just that they are doing this kind of cutting edge stuff makes me excited about the fact that I've chosen MGH over Lahey.

There was another new piece of information I learned at MGH... this one is actually a bit of bad news and I've spent the last few days pondering how exactly I should deal with this unfortunate bit of information. It turns out that following my transplant I won't be able to eat my favorite food ever again. Sushi. Yep... no more sushi after the transplant. I think sometime between now and the transplant I'll have to have a big sushi party. Maybe an all day sushi affair. I can not tell you how sad this makes me... nothing can ever replace the full on food joy I receive from eating sushi. People try to comfort me by saying things like: "Well you can still eat California rolls" but come on.. that shit's not real sushi.

My name is Bil... and I have kidney disease and a hankerin for some sushi.