Dialysis

Things have evened out a bit with dialysis. I don't feel as weird during treatment. Every time I go, I'm reminded that I'm not a patient person and that I hate sitting still. I get antsy in the chair and occasionally, when my batteries die on my computer or the TV goes dead (each chair has a hospital TV on an arm), I want to get up and move around way before the treatment is over.

My blood pressure is still uncontrolled. It's way above where it should be on a daily basis, but during treatment it spikes upwards. Usually treatment lowers blood pressure. Once again I'm having an unusual reaction. My guess is that my electrolytes are getting out of whack and I'll discuss it with my new nephrologist when I see her next.

Labels: blood pressure, dialysis

  ¶ 9:46 AM

  It's A Whole Sucking Thing...

"Blood starts it, and until the blood stops flowing it'll never stop..." - Dawn
" 'Cause it's always gotta be blood" - Spike
- Joss Whedon's Buffy The Vampire Slayer

First thing in the morning, I'm wheeled up to the dialysis clinic on the 10th floor of the hospital. I'm really nervous because I came so close and was turned away yesterday, but my Nephro is here and that reassures me.

Emily hooks me up to the dialysis machine and my blood slowly spills down the clear plastic tubing. I watch as it travels over to the pump. The pump pushes it over to the dialyzer, the filter pinks up and then turns bright crimson. Finally, the blood completes it's world tour and returns to my chest. The whole thing is surreal. Blood was never meant to leave the body. I think I might be feeling desperation. Face it, all your life, blood leaving the body was bad, it meant a cut or injury. Here I am willingly letting someone spill my blood. There's something medieval feeling about the process when compared to a transplant.

I feel a bit lightheaded, maybe it's the beginning of a headache? I can't tell, but I do know the feeling is weird. Maybe I'm just freaked out by all the blood that's not in my body. Maybe the dialysis is doing it's job and I'm feeling the effects of cleaner blood...

With the transplant, my blood went from toxic to normal overnight. The change was really noticeable. This first dose of dialysis is by design very mild. They want to make sure I don't have an allergic reaction to the filter used in the process. The mild treatment makes it really hard to notice any difference.

I watch Be Kind, Rewind on my laptop during the procedure. Jack Black is hilarious and he keeps my mind occupied for the 2 hour treatment. I can feel the eyes of the staff on me as I laugh uncontrollably. Just like yesterday, I seem to be the only dialysis patient with any life left in me.

Mos Def, Danny Glover, and Jack Black wrap things up on my laptop as Emily flushes saline into my tubing. The saline flushes my blood through the pump, then over to the filter and gradually the tubing leading in to my chest clears up. She unhooks me and gets me ready to go back to my room. I sit up slowly, thinking I'll be light headed, but I feel fine. I don't feel wiped out.

Breakfast is waiting for me in my room, it's super cold and what I thought was grits turned out to be oatmeal. The French Toast is actually one slice. Luckily, lunch will be in an hour. The nurses keep giving me blood pressure meds all day long. My blood pressure has been high, is high, and will be high for the forseeable future. Dinner is similarly unfulfilling, so I nicely ask the nurse if I can go to the cafeteria for food. She lets me go and I walk down in my pajama bottoms and hospital gown.

"Blood is life, lack-brain. Why do you think we eat it? It's what keeps you going. Makes you warm. Makes you hard. Makes you other than dead..." - Spike from Joss Whedon's Buffy The Vampire Slayer

Labels: Be Kind Rewind, blood, Buffy, dialysis, Jack Black, Spike

  ¶ 8:48 AM

  Inova Fairfax Day One

As I was waiting to sign in to the hospital, a middle aged woman walked in to the registration area carrying a takeout tray of food. She had signed in before me, and then had walked off for food. When her turn came to meet with the admitting person, she started whining like a child. She had been there from 10 to 6 yesterday waiting for a bed. The "chinese" doctor who had admitted her was no longer there and was no longer her doctor, she was hungry and had left for food. She was very nearly crying. The admitting person calmly asked questions and determined that she had a bed and had left her room (I'm guessing from the psych ward). The crazy lady walked out of the office and then started to tell me her life story, beginning with her day yesterday; by the way, did I want her food because she had barely touched it; and all she really needed was a beer (did I mention it was 8:15 am?). She then wandered off and was soon chased down by the admitting person and a supervisor.

I was starving and had asked for a breakfast tray as soon as I got to the room. I met with my Nephro, then I ate and was immediately taken up to dialysis. My Nephro met me again at the dialysis clinic, it was a good thing too, I was really nervous and it was very reassuring having him there.

It's one thing to visit a dialysis clinic or to read about the process, it's quite another to actually be wheeled in to a room full of machines that are whirling, pumping and beeping away. The staff go about their work in a serious fashion, but they make light hearted conversation to diffuse the tension. They explain every step of the way to reassure and calm me.

Across from me is an old man who looks like he's dying. Along with dialysis, he's got an IV and what appears to be a feeding tube; he alternates occasional convulsions with low moans. His mouth is wide open and his eyes are shut tight. Next to him is a younger man (still older than me) who also appears out of it. His eyes are open, but often they roll up into his head and all I can see are the whites of his eyes. Physically, his body looks healthy, but he moves less than the old man and seems just as near death. I secretly want to ask my Nephro if I'm staring at my future.

The nurse hands me a needle and tells me it's the smallest they use. It looks three times larger in diameter than any needle I've ever been stuck with and about twice as long. They keep telling me how much its going to hurt. They give me a shot of lidocaine to numb the area first. One of the staff recommends against the lidocaine, because I won't get it later, and he thinks its better not to get used to it. The nurse gently tries to insert the huge orange needle into my new fistula, but she immediately has a problem. The walls of my vein aren't strong enough yet. I'm grinding my teeth trying to will the pain into submission. It's not working and long after the needle has been removed, I'm still in pain.

Since the fistula isn't ready, I must get a permacatheter placed in my chest for access, unfortunately, since I had breakfast, they won't be able to do the surgery until my stomach has had a chance to clear. The Interventional Radiology department wants to do the surgery tomorrow or the day after, but my Nephro won't be able to justify the extra days to the insurance company, so it has to happen today, IR relents and schedules me for 5pm.

I'll be missing lunch, but I should be able to get dinner. I'm wheeled down to IR Pre-Op just before 4pm, so I'm thinking maybe they'll get me in and out quicker, but no such luck. I fall asleep waiting to get moved into an Operating room. I'm wheeled into an operating room well after 5pm. They take my necklace and my glasses, shave my chest, and give me Oxygen and possibly something else. It appears that they are giving me a little bit of Anesthesia, checking my state, then giving me more, so I try to stay coherent as long as possible, in the hopes they will really knock me out. There's nothing. Then I feel needle sticks. More nothing, then I feel the painful incisions. More nothing. Then pressure as the catheter gets placed. It feels rough and painful, but once it stops I've fallen back into nothingness. I spend the next hour trying to shake the groggy feeling.

I was able to get dinner, which is a good thing, I don't do well on an empty stomach, but the portions weren't as filling as I'd like. A couple hours later, I was hungry again and had the nurse bring me some snacks.

Labels: Catheter, dialysis, inova fairfax hospital

  ¶ 8:19 AM

  Dialysis Tomorrow

With two emergency room visits, and perpetually big feet, I'm well aware that it's time for dialysis. When I went to see my Nephro last week, I found out my creatinine was 9.8, basically at the 10 threshold for dialysis we set last year. I told him it was time. The first time around when my kidneys failed, I resisted, but this time, the writing has been on the wall.

So, I'll be going in to Inova Fairfax Hospital for three days to start treatment. From what I understand the treatments will be very mild, they don't want to give me a full dose of dialysis right off the bat. I'm guessing that they want to keep me in the hospital so they can monitor my intake and output more closely. My blood is getting pretty toxic right now, (just a little bit dangerous), so maybe they want me at the hospital to monitor my other organs. There's also some question as to whether my AV Fistula is ready, so they may need to surgically place a catheter to start.

I'm still not sure what this means for my everyday life. I know I'll be going to a clinic three days a week (every other day). I know I'll need to follow a stricter diet. I don't know how much exercise I'll be able to do. I don't know what my energy level will be like. The list of side effects and possible side effects of dialysis is too long to list here.

I was just as scared and just as clueless when it came time for my transplant, and I was pleasantly surprised by the results, so maybe dialysis will also surprise me. Either way, I'll adapt.

Labels: dialysis, inova fairfax hospital

  ¶ 6:46 AM

  Dialysis Access

I saw a surgeon today to talk about him adding a fistula to provide access for dialysis. Basically, they will be rewiring my plumbing by making a connection between my artery and my vein. It's done up near the wrist, and the vein will then enlarge from the wrist to the elbow, providing a large easy vein for the dialysis tech to stick. I don't know how I'll feel after I start dialysis, but for right now, I'm hunkering down for the long haul on dialysis. I just don't want another transplant right now. I need a break from the meds.

The fistula can be damaged by trauma, which he described as grocery bags strapped over the vein, or volleyball impacts to that area. He felt that swinging a baseball bat might cause some damage to the fistula (So, I can forget that career in the bigs), but as long as the activity doesn't squeeze the vein it's ok.

I left his office really depressed. This past week has been really rough mentally, I can function, but I run out of steam real fast. So, I've had to rely on others to do the work I've done in the past. It's hard to step aside and let my wife lift a cooler, or watch my mother-in-law move a table, or ask my dad to go get the car because I'm too tired to walk the rest of the way. It's just wrong, like I'm not useful anymore. Then to find out today that there will be things I can't do, just added to that feeling of shame.

I watched my gramps go through this transformation. He went from a strong man with terrific endurance to a wheezing emphysemic (long time smoker). There's a slice of time burned into my memory. My grandfather was struggling with a large object. My mother or grandmother told me to help him, so I grabbed it and hauled it into his house. He yelled angrily at me "I can do it," as he stood there wheezing. He protested for many years afterwards, but never with that kind of anger, like I ripped something from him. He doesn't protest anymore, he can't walk across a room without wheezing now.

I think that's why I really want to help out with this RAAM. Yes, it could be the last chance I get to crew RAAM, but I want to feel useful. I hope my body doesn't let me down.

Labels: dialysis

  ¶ 8:47 PM

  The End Is Nigh

I saw my nephrologist yesterday and things aren't looking good. My hematocrit peaked at 33 at my last visit and is now down to 28. My glucose is a bit high, which is most likely a side effect of the Prednisone...

Speaking of Prednisone...
1. Difficulty sleeping (check)
2. Fatigue (check)
3. Excessive night sweats (check)
4. Uncontrollable Shaking of Hands (check)
5. Shortness of Breath, especially at night (check)

Last but not least, my creatinine has reached 5.6, a level that the Head of Transplantation at Washington Hospital Center said would be appropriate for transplantation. My nephro and I feel that we should use this kidney until it doesn't function anymore, so I'll be waiting a couple more months. In the meantime, I'll be getting access for dialysis just in case. It's an outpatient surgery where they cut open my arm and connect my vein to an artery. I really don't want it, but it makes dialysis safer and easier. The vein grows larger to accommodate more blood flow and it will look like I'm hiding a climbing rope inside my arm. I've seen some on transplant patients that look seriously scary.

I know I keep talking about Kidney Failure in apocalyptic terms and I really shouldn't. This guy Shad Ireland has completed an Ironman Triathlon while living on dialysis. I have so many questions, but I suspect there are no answers. As a transplant athlete, I was pushing the boundaries with my ultracycling habit to the point of amazing my nephro docs. I suspect that as a dialysis athlete, I will again be pushing those boundaries. I wouldn't be able to do solo RAAM, but team wouldn't be out of the question, maybe a transplant team...

P.S. The only good news to come out of my DR appointment? Lipitor is working and my cholesterol is down reducing my risk for heart disease.

Labels: dialysis, Prednisone

  Link ¶ 5:47 AM