This is a wholly self-serving article, something I’ve studiously attempted to avoid in the 17 years I’ve been writing online. It’s totally self-indulgent and awfully unprofessional. It’s an email to my sister after I got her weird automated voicemail (like the one we have on our landline) and it freaked me out.
It’s of interest only to my family and friends and those facing permanent kidney failure (end-stage renal disease) and hemodialysis. And I publish it here only so I don’t have to repeat the story (although the biker scar bit might be worth it on good days).
If you’re not a family member or friend, just mosey along. This isn’t what you’re looking for. Here’s the Johnny Cash picture you’re probably looking for. And you know what? That’s pretty damned representative of how I feel right now.
Last Sunday morning (29 March) my fistula failed. I met the surgeon Sunday afternoon who did a quick exam and confirmed it had, indeed, failed.
I was scheduled to go to United Hospital for an outpatient procedure to place the catheter in my chest on Monday morning (30 March). Between Sunday and Monday the surgeon and interventional radiologists decided the success rate with trying to de-clot the existing fistula wasn’t good enough so they weren’t even going to try. I was admitted to the hospital.
When I explained that the ID strap would have to go on my right wrist because of the pending procedures, they got pissy and said they’d just have to do it on the floor, then. One of the first things I remember being told about my first fistula was that my left arm was out of bounds for everything—watches, blood draws, blood pressure checks, everything—including ID straps.
They started off really well by sending me to the wrong place. Well alrighty, then. Every time I go to United Hospital they lose patients. It’s not usually me, but it’s happened before, so at least I knew I was in the right place.
The sonogram ultrasound technician was supposed to do a vein mapping of my left arm so the surgeon could decide where to place the new fistula. She did the sonogram ultrasound, but forgot to draw the lines on my arm. Oops.
The interventional radiologist placed a tunnel catheter in my chest (like the one I had when I was first diagnosed with kidney failure). This is a direct line from two outside ports directly to my heart. The first one I had got infected and I became septic and almost died. I’m hoping for a better outcome with this one. It will be in place six-eight weeks until my new fistula matures. Until then they’ll use this for dialysis. The catheter can’t get wet. The catheter has to be protected from infection (direct line to the heart, remember) and water carries bacteria. That’s likely three months without a shower. Believe it or not this no showering bit is actually the worst part.
On Tuesday morning (31 March) I had a three hour dialysis session on the new catheter with no problems.
Later Tuesday morning I had surgery to place the new fistula. It was placed on my left upper arm with the incision running from my shoulder to across my elbow. Going in, I thought this would be a small, two-inch incision like the one on my left wrist for my first fistula. Turns out it’s a pretty horrifying incision from my shoulder all the way down and across the inside of my elbow. I don’t remember anything from about 12:30 until about 6:00PM when they took me back to my room.
Nurse one would come in and tell me to elevate my left arm. I’d do so. A few hours later, nurse two would come in and tell me that it shouldn’t be elevated. It was like Abbott without Costello. And vice versa.
On Wednesday afternoon (1 April) the surgeon with the great name—Roy Hope—came in to take the bandages off my left upper arm. That’s when I saw the incision that I thought was going to be maybe two inches long that, in reality, traversed my entire upper arm. Holy smokes, that’s going to be one mean mother of a scar. I go to this club on the West Bank sometimes that all I’ll have to do is roll up my sleeve to fit right in with the bikers.
To top it off, apparently the adhesive on the tape they used to keep my eyelids shut during surgery was something like super glue. The skin on both of my eyelids was torn. Oh, happy day.
Later Wednesday my catheter developed bleeding problems and required another procedure. It was especially inspirational when the nurse—without a mask or gloves—reached out for my catheter area, jerked her arm back sharply, and squealed that she “didn’t touch it.” Nice catch, sharpie.
Late Wednesday, I was discharged from the hospital. I worked a little Wednesday evening.
I don’t remember Thursday (2 April) except I got an impaction from the anesthesia and Dilaudid and paid a visit to my Chinese medicine practitioner who did a colonic. Oh, that was loads of fun, let me tell you. I went home and did some work because if I’m going to feel miserable I might as well get paid for it.
Friday (3 April) I don’t remember much of except I worked in the morning, got my head shaved (no baths or showers with the catheter, remember), went to my usual Friday lunch appointment with my Chinese medicine practitioner, worked in the afternoon, and had my normally scheduled dialysis session from 3-7PM. My catheter developed a bleeding problem again, just to add the cherry on top. I got home and did a few more hours of work. I guess that’s pretty much the entire day, so I do remember it.
I didn’t sleep Friday night. I’m guessing the Dilaudid had finally worn off.
Saturday (4 April) at noon I went to my regularly scheduled appointment with my Chinese medicine practitioner, and got the mail. The hospital bills are already coming in if you can believe that. Even better, I learned that Qwest is getting out of the wireless telephone business at the end of October. Karen and I have these great grandfathered rates (I’ve had a mobile phone since they were analog) that none of the other carriers can come close to matching. Oh, and the refrigerator is leaking water all over my office floor. How does it know to come around the corner from the kitchen into my office?
Aside from not being able to shower, the worst part of this ordeal is learning that Karen can’t drive. She’s had to usher me around to all my appointments because I can’t drive yet. 15 years she’s been driving that car like that. It’s just sad.
How was your week?
Update: Saturday, 4 April 2009 04:48PM CDT: Coming back online after being totally disconnected for an entire week is an ugly thing. I’ve completely given up on Twitter, having removed Tweetdeck from my dock, I don’t think it will be returning. But then—just then—Chris Locke stumbles into my RSS feed. Writing like Locke’s makes me wish I were one.
Update: Saturday, 4 April 2009 05:10PM CDT: Added the missing hypertext links and a clarification. I guess the Dialudid is still in there.
I’m sorry you are having to go through all this. I hope next week is a lot better…....
Catherine LPN (remember me?)