Because dialysis didn’t work at all yesterday, I had to go somewhere that is open on Saturdays. The Fresenius center in Robbinsdale is even newer than my normal place in St. Louis Park, MN. It is a lot darker than my normal center, which is nice since bright lights seem to contribute to the headaches I get at dialysis. We got both needles in on the first try, and things seem to be going well.
So I had another rotten day today. I got all hooked up at dialysis and things seemed to be going okay, but about two minutes into my run my arterial line started vibrating (usually because the needle is up against the vessel wall), and the pressure fluctuations caused the machine to turn itself off (a safety precaution). We weren’t able to get it going despite playing with the needle for a while. That ended in an infiltration. There’s sort a of no-man’s land in the middle of my fistula where the vein is deeper or something that makes it a lot harder to stick, so the infiltration basically ruined the whole area on one side of that. We tried to get another needle in just above it, but that also didn’t work. It also infiltrated, which meant that the lower 2/3 of my forearm were puffing up like there was no tomorrow. That made all the room south of my venous needle unusable for the day, so we had to go above that and switch that needle to draw blood out. As soon as we started up, it began having the same vibrations and pressure spikes. As a last ditch effort, we thought about trying to reuse the first arterial hole (the original infiltration from today) going in the opposite direction (you can have the needle for the arterial line going toward the hand or elbow), but it was bleeding a heck of a lot, so we had to abandon that plan as well. So I basically got zero dialysis before a weekend. That’s not good.
The nurse in charge of the facility called my doctor to find out what he wanted to do. He ordered me to get a fistualgram today and then get dialysis tomorrow at another facility (my normal place is only open M,W,F). I drove back into the city just in time for the worst of rush hour and set about finding someone to drive me to the surgery center. They were going to sedate me, so I wouldn’t be allowed to drive myself. Thankfully, I was able to track down two volunteers despite the really short notice. I had a 10:15am schedule for the fistulagram. I ended up sitting in the waiting room until noon. Then I sat in a staging area for another hour after I’d changed into a gown. It was quite cold. The actual procedure took less than 10 minutes because they didn’t see anything wrong (no narrowing of the blood veseel), so they didn’t need to do any angioplasty. I guess it’s good news that nothing was seriously wrong, but it is really annoying that there wasn’t anything wrong given all the problems we’ve been having. I see no reason not to expect them to continue. I took a picture of my arm since it was definitely looking worse than ever, but I think they might be a little to grotesque to post here for everyone to see. Arms just aren’t supposed to be buffy, bulging, or discolored like that.
On the up side, the friend who drove me the appointment went to a great donut shop while I was waiting for surgery and had a delicious snack waiting for me when he picked me up. He’s also going to hang out with me for a while since I’m not supposed to be alone to make sure I don’t have some fluke reaction to the sedation.
The other crappy thing is some news about transplant. I talked to my coordinator yesterday. I left a message for her on Wednesday. When she called back, I asked for an update. I wasn’t sure if she’d be able to tell me anything new because of the extreme lengths they go to to protect donor privacy. To my surprise, she said she was glad I called because she had news. Then she dropped this on me: the best possible match out of all the people who have so far volunteered to donate to me (my understanding is that this person was the one good match) and in their entire paired exchange network went to Mayo for testing and education, and things didn’t work out for whatever reason. So we’re back to square one. She said I should try to find more people and ask all the people who had volunteered to call Mayo again to affirmatively state that they’re willing to be part of a paired exchange. I was pretty taken aback by the news about the good donor since I was–foolishly, probably–under the assumption that it would work out, so I wasn’t prepared to ask any good questions. Now that I’ve had a day to process, I have a lot of questions and am fairly annoyed.
First, if they had this big update for me, why did they wait for me to call them to let me know? If I had waited another month to check in, would I still be waiting around to hear that I need to get my butt in gear regarding finding more potential donors? My situation really sucks right now, and a transplant is life-changing shit. I’d like my transplant program to act with a sense of urgency! Also, why don’t they ask people up-front if they’re willing to indirectly donate to me through a paired exchange? How do they expect me to contact all the people who have volunteered when I don’t know who they are and they won’t tell me? And finally, why does it matter if my potential donors are willing to do the paired exchange when the last news I heard about that was that there weren’t any good matches for me in it? Honestly, I’m starting to get pretty frustrated with Mayo. For such a well-regarded program, I feel like they could really use some organizational help. Why isn’t their communication more proactive? It could also be more consistent. There have been a number of instances where the recipient coordinator told me one thing that didn’t match what the donor coordinator told people who called her. A potential donor in his early twenties ended up talking to someone new (not Kay) when he called, and this woman seemed to try to talk him out of donating before doing the phone screening because he’s so young, and he couldn’t know what the future would hold! Really? He doesn’t have any risk factors, and before you run any tests to evaluate the risks, you’re already trying to discourage him? If that’s the policy, then why did the nephrologist and surgeon I saw there specifically tell me to try to recruit young donors since a kidney from someone in my generation is likely to last much longer than one from a person my parents’ age? Surely these world-class doctors take the Hippocratic Oath seriously and wouldn’t recommend anything that they think could do anyone harm. My aunt and uncle keep encouraging me to think about flying out to New York to see my uncle’s surgeon at NewYork-Presbyterian/Columbia University Medical Center where his kidney transplant was done. I’m actually starting to think about it. That would have the added benefit of working with a hospital affiliated with the National Kidney Registry, the organization that organized the 60-person kidney chain that I wrote about earlier. Anyway, I’m probably just venting, but I will be giving my coordinator at Mayo another call and asking some tough questions.
My afternoon has gone much better than my morning. I found out that my least favorite dialysis patient (I’ve written about her before) has left my clinic for good! The root canal wasn’t bad at all, and my awesome friend Juliette sent me flowers! I don’t think I’ve ever gotten flowers before. That was a really nice surprise. Several other friends have also been really supportive today after I told them what was going on. Also, my doctor approved some allergy medicine. I’m feeling quite a bit better.
I’m not in very high spirits at the moment. I had another infiltration this morning in the venous buttonhole (the new one we started after the trouble a week ago). My arterial line is also, for the first time, giving me no end of problems today. It wouldn’t work with the dull needle, but not for a lack of (painful) trying, so we ended up using a sharp one. Since both needles are in sort of precarious or finicky locations, I need to hold my arm just right for the whole time today; its in sort of a stress position, too. That’s really crappy since I couldn’t get much sleep last night, so I’m very tired. We need to talk to my doctor about the arm. I’m probably going to need to go get an ultrasound and fistulagram (where they look at it with dye and widen problem areas with a balloon, like a heart patient). If that doesn’t work, they could do another surgery. The nurse assures me that we’re far away from needing another catheter and that there are plenty of options to try first. That said, I’m kind of freaking out a bit. I desperately want to avoid another tube in my chest.
It probably doesn’t help that I’ve generally not been handling, in terms of my emotional state, this whole situation as well for the last few weeks. I feel like all my coping capacity is being used up just dealing my kidney situation when it is all going according to plan. Setbacks like I’ve had recently really wear on me. Also, the insignificant but frequent frustrations involved with my daily responsibilities at work have had a tendency to upset me. I feel like I just have a really short fuse lately. I know I’ve been much shorter with people over the last month. I particularly notice it, unsurprisingly, on dialysis days. So far being aware of this trend hasn’t helped me change it.
The unseasonably warm weather this winter/spring has also caused my allergies to kick in early. Of course, all my antihistamines have kidney disease warnings. My pharmacist couldn’t find one that didn’t at least say to consult a doctor before using, so I was in bad shape all weekend (itchy eyes, sneezing, and the sniffles). Hopefully my doctor will be able to solve that problem today. And I have a root canal (my first, thank goodness, and hopefully last) this afternoon.
On the positive side, I got my latest lab results back, and they’re still excellent. My creatinine clearance rate (how well my kidneys are cleaning my blood) went down but is still surprisingly good, so my overall dialysis adequacy wasn’t affected much. I guess those little guys are soldiering on.
We’ve had some trouble with my buttonholes lately. On the 16th (the Friday before last), my venous buttonhole infiltrated once we started trying to use dull needles. An infiltration is when something goes wrong with a needle stick that results in internal bleeding. It can be a good bit of blood because they use blood thinners to prevent clotting in the machine and because there’s a lot more blood flowing through a fistula vein because of the connection to the artery. My arm puffed up pretty impressively (at least as much as if I cupped the top of me left arm with my right hand, so probably close to 3/4 of an inch). It was also pretty uncomfortable, as you can probably guess. Check out the bruising on my arm in the picture to the right. That was taken this morning, 10 days after the initial infiltration; you can imagine what it looked like before.
We actually had a really hard time getting things going at all. When you have a venous infiltration, you have to use another needle placed higher on the arm. That allows most blood to bypass the problem area by being directed through the machine, lowering pressure around the infiltration and minimizing bleeding. Unfortunately, the next needle we tried didn’t work either. By that time we were quickly running out of arm that had a vein of sufficient size. We finally had to use a smaller needle really close to my elbow. The smaller needle required a lower flow rate, and the placement was unstable, so it gave up the ghost early, cutting my run short. I think I ended up getting about 1/4 of my normal amount of dialysis. And of course it happened right before the weekend, when I go two days between treatments. I felt really bad the next day, though I think it was psychological since I felt good on Sunday.
We had the same problem again the following Monday. I guess the vein seems to wiggle a bit there, preventing the dull needle from making a clean entrance. At least we were able to get a good needle placement right away that allowed a full run with normal flow rates. We decided to abandon that buttonhole and start a new one higher on my arm.
The catheter removal appointment went well last Wednesday. I’d been warned that they basically just pull it out of you (yikes!), so I was mentally prepared. I basically just went into radiology at the hospital and a nurse pulled (really hard). I guess they normally just come right out, but mine sure wanted to stay put. I didn’t get numbed up or anything for the first go. When that didn’t work, I got some local anesthetic. Then he just pulled longer and harder until it came loose.
I was surprised by the tube’s diameter. I saw how big it was when it went into my chest. but I assumed it would be smaller inside of me. I was wrong! It was about the size of a Bic pen the whole way. I never realized how big the jugular vein was. I expected to bleed a lot since my fistula will practically spray if given the chance. In fact, it hardly bled at all. I guess that vein has pretty thick walls and low pressure. All in all, the removal hardly took over half an hour.
Since then, I’ve taken a bunch of showers and worked out twice. I feel so much better!
We had some drama at dialysis the other day. There’s another patient that I really dislike. She was the first person I met when I started at the clinic, and she rubbed me the wrong way right away. She whiny, passive-aggressive, and verbally abusive to the staff (who are great). I started on second shift (around 11am) but moved to a 7am slot in November so I could actually work at least a half-day. I’m not a morning person (that’s an understatement), but I was happy to move to get away from this other patient. A couple weeks ago, she moved to first shift, too! : ( She was her usual, unreasonable self on Monday. She wanted to cut her run short by like two hours. Then was saying she’d never do dialysis again, that she wanted to get her catheter out (she refuses, for some reason, to get a better access). Nevermind that she’d die. The staff, understandably, wasn’t thrilled with that idea. Then she whined to the doctor about the staff and lied to various staff members about what others said, trying to play them against each other. She unfortunately was sitting right next to me, so I had a front-row seat to the show. (As I write this, she’s complaining that one staff member picks on her because he follows the schedule, meaning other people get off when they should instead of letting her cut in line to get off early.)
Her behavior really bothers me. I generally dislike whiners and bullies, but there’s more to it. I expect people to behave reasonably and follow good rules. Asking to get off early and not following the diet aren’t safe, and seeing self-destructive behavior makes me uncomfortable. I feel like there’s sort of a social contract at dialysis that we all put on a happy face, be nice to each other, and generally pretend this whole situation doesn’t massively suck. She breaks all of those conventions. It’s a lot harder to pretend everything is fine when your neighbor is freaking out. We’re all supposed to set a good example for each other.
It took just about all of my self-control to resist the urge to say some really sharp things to her. I know that would have just made things worse for the staff by escalating the situation, but it sure would have felt good. I talked to the staff about her on Wednesday. I think we might move me to a different seat. That’ll help.
Ack, more rule-breakers! Two other people near me want to get off early today. I don’t get it. Sitting here sucks, but it isn’t that bad. Anyway, sorry for venting.