In November, I wrote about the pre-dialysis fistula and port surgery which had been put off from the 29th of October to the 17th of December. I explained that my poor nephrologist had been accosted by a nurse about scheduling it without consulting her first, and that was the reason for the first postponement. Well, I chuckled a little too soon – I got a taste of what he experienced … :p

In early December, I got a call from the local “PD nurse” (peritoneal dialysis nurse). She wanted to set a time for the instructions to begin. Although I was dreading the entire experience, it was nonetheless a relief that something definite was happening, and even more of a relief when I realized that I would finally be past the stage I’ve been worrying about for the last six years: the worrying about actually getting to ESRD and needing to start dialysis, and then the actual start of the dialysis itself, it would all soon be behind me. I would be able to settle in and try to adjust to the new reality. Those of you who’ve been long-time readers have probably noticed by now that things are not always quite that simple for me. Murphy has my number on his speed-dial list.

The conversation with the PD nurse started out really well. The date set for the PD training was from yesterday (January 12) through the 16th. We seemed to be flying through the details … until …

… She told me that they like to start at 8:30 AM. I told her that we didn’t have transportation at home until 3 PM, and that I’d still need time to get to wherever I was going. She asked all of the expected questions … could I get a ride … could I get my hands on another car … and so on … and to each question, with my heart sinking lower and lower, I replied in the negative. Still, I thought (hoped) that we would be able to work something out; it’s no small thing to be told that you won’t be able to do the type of dialysis which you’ve been planning on for years, and which would work the best for you and your family, simply because you can’t seem to set up the times for the training.

We went through a whole lot of talking, and with each minute, my heart sank ever lower. I won’t go into detail, but I will say that she lost her patience with me, although there was nothing I could do about any of the commuting situations. There were other problems, too, which I won’t go into unless someone actually asks for the sordid details. We communicated twice. The second time was a few days later when I found a way to jump through her first few hoops … but she immediately shot it down when she heard it.

By the time we were done speaking, (I mean, she was done speaking – as I was about to ask her another question when I heard a click. I don’t know if she thought we were done, but she hung up without warning) I was in tears. I realized that even if I could meet her requirements, I didn’t think I would ever be able to deal with her every other week for the rest of my life. I could certainly see why my poor nephrologist backpedaled so quickly when she jumped on him. Ouch!!!

I went ahead and canceled the surgery, since it became apparent that I was not going to be able to get the training I needed in time. I began calling other dialysis centers and asking them for information, and that was when I discovered that the PD nurse had lied to me on at least two very important points. Apparently, she just wanted me to do it the way she wanted it done … period. Being that this woman is the only PD nurse in our entire area, if I wasn’t able to jump through her sometimes arbitrary hoops, she could effectively stop me from having PD, and I would have to submit to HD in a dialysis center three times a week for the rest of my life. The thought had me vacillating between despair and anger.

A bit later, I got a call from my nephrologist, and we tried to decide where to “go” from the current position. At one point he said “You know, you’re going to have to take some responsibility for your own care” … say what? A new reason to not be fond of the PD nurse: I realized my part of our conversations had been misrepresented. I was quite upset that he even thought that I would take such a position, and the shock made me brave enough to tell him what had happened from my own perspective. After hearing only a few of the basics, he told me with an embarrassed chuckle: “[name] likes to be on top of things.” He also told me that there were things that she’d told me were necessary – which weren’t … one of the most important being that I would not have to drive all the way to Portsmouth every other week for what could be the rest of my life – once a month was all that was necessary. By the end of the conversation, I realized that I wasn’t the only person who thought the PD nurse was some sort of control freak, but the knowledge didn’t help my position: the most important hoops were still impossible for me.

Dr. M. and I agreed that we would discuss the matter further at my upcoming appointment. It had already been changed twice, because they wanted to see me before the surgery, and my appointment had been the day after the procedure. They moved my appointment with Dr. M. ahead of the surgery, and sent me a notice by snail mail, and whaddya know! The time and date were the same as an appointment with a different doctor, and both offices are just under an hour apart. Murphy, remember? Anyway, they set it for the for the 12th of December … a Friday. On that day, I already had two other appointments … one in the morning, and one in the late afternoon, and they were all in different towns. Well, I shouldn’t have worried, since the 12th was the day we were hit by the December ice storm, and over a million New Englanders lost their power for up to a week and a half. When I woke up that morning, I sat up in bed and peeped out the window … groaned … and went back to sleep. I wasn’t half as upset as I sounded, though! ;o)

When we got our power back, I called my three doctors to reschedule my appointments. I was dreading calling the nephrologist’s office, because that’s the sort of place that gives you a 6 month wait between appointments, cancels on you, and then sets your next one for 6 months later. With one remarkable exception, I’ve had some very bad luck with the office help over the years … but I’ve almost always had a good PCP who would pick up the slack.

[side comment] … that scheduling nightmare I mentioned above actually happened to me. It happened at a time when I was totally without a PCP, and the nephrologist was all I had. I simply couldn’t wait another six months to see someone. After about five years of struggling with this sort of thing, meds not faxed in, labs not faxed in, rude workers, etc., I left the group and went to a fellow who had his own practice. I hated to leave my nephrologist, because I really liked him, but I just couldn’t deal with the silliness anymore. Within 2 months of starting with the new fellow, he joined the first group! That meant that there was suddenly only one group of nephrologists in the area, and I was back where I started from. Did I mention Murphy? [/side comment]

There where no openings for a time that I could actually get there until the end of March. He didn’t wanted to see me before that, and I certainly agreed, but there were simply no openings. About a week before Christmas, or just a little more, my husband was laid off until the 19th of January. It was going to be a really rough Christmas. However, Murphy must have slipped up a bit, because having my husband home also meant that I’d have access to transportation at any time of day! I was finally able to get in to see Dr. M. last Friday … and we discussed a lot of different options. He convinced me to get the fistula, and see where we can go from there. He still wants to put me on a donor list, but I haven’t acquiesced yet, because I’m not sure that it would be the right thing for me to do. He also told me that it’s even possible to do HD at home, if I continue to have transportation problems. That was encouraging … and I’m glad he said that … because …

… On my way out of the office, I stopped to talk to the “remarkable exception” I mentioned earlier. I commented that I’d heard that there were no more doctors from that practice going to the dialysis center that’s only a short drive from my home. I wanted to know what was up. She told me that they’ve closed it down, and are now building a new dialysis center more than 20 miles away. I thought of how difficult it would already have been to get to the center that was nearby …

By the way, have I mentioned Murphy yet? Ugh!

So, that’s where we stand now. I expect to hear from the surgeon’s office any time, and they will make an appointment for me to see Dr. S. again. We’ll set a new date when I go. I will try to blog through the experience …

Hopefully the telling will be less convoluted, and I’ll be able to keep it short and sweet. Hope none of you got eyestrain. Actually, left out a lot of the story, or it would easily have been three times longer than it is already!

As I read the above quote, I wonder if English has really improved over time, or just gotten more garbled … ;o)

I don’t want to let too much time pass without another post. The longer I wait between posts, the easier it is to just keep waiting. The moment will never be perfect … so, isn’t that what blogging is about , anyway?

There’s nothing new to report on the barn, but I will post as soon there is some more progress. My son is cutting and splitting wood to earn money for the materials he needs to continue the work. In the process, he’s also helping to bring a bit of heat into the house … which was much welcomed this morning, since the temperature was about 21°­F (-6.1°C) outside when I woke up.

But the barn isn’t all that’s been going on, and I wanted to touch upon a few different subjects. Since there have been a lot of developments since my last “patient blogging post”, I thought I would write about what’s currently going on. I think that my patient blogging might pick up in the near future.

After my stay in the hospital last fall, things remained pretty stable all the way around until late spring. At that time, I was informed that my lab values had worsened. I wasn’t really concerned, because they’ve been bad often in the past, and then went back to what is normal for me rather quickly. By mid summer, however, it was becoming apparent that this wasn’t a normal fluctuation, but that I had simply lost more kidney function. We began talking about dialysis and transplants again. At my age, I don’t want a transplant, but I’ve decided to accept dialysis.

Having done quite a bit of research, I decided that I want to start with peritoneal dialysis. My nephrologist told me that it’s a good way to go, and that the biggest concern is an elevated chance of a serious infection, usually in the first month of dialysis, as the patient is still learning how to deal with things. He commented that peritoneal dialysis causes less stress on the cardiovascular system, and was the most likely choice for allowing me to lead a relatively normal life.

He sent me to see a surgeon to prepare for the necessary surgery. I saw him in mid-October, and he scheduled me for surgery on the 29th of October. He told me that he would give me a port in my abdomen for peritoneal dialysis, and also a fistula in my left arm for hemodialysis, just in case. There’s a question of whether the peritoneal dialysis will be adequate, because of possible scar tissue which could be left over from the laparotomy I had in 2004. In that case, I wouldn’t need to go back for yet more surgery, and then still have to wait for the fistula to be ready for usage.

Not long after I saw the surgeon, I had a call from my nephrologist – in person. You could have knocked me over with a feather. He sounded a bit nervous as he told me that I couldn’t have the surgery on the 29th … that it would have to be rescheduled. He tried convince me to do it in two sessions – the fistula on the 29th, and the port at a later time. I really wasn’t going for that. He also said that if I really needed dialysis sooner, that they would have a fistula put into my chest He mentioned that the nurse who teaches PD patients how to actually perform the dialysis at home didn’t have any openings until early January. I was still a little confused, but I told him that I would call the surgeon and ask him to set a later date.

I never got to. A few minutes later, the surgeon’s office called me. They told me that the nurse who gives the PD instructions (a one month course, apparently) had called my nephrologist and danced on his head for not going through her first. *cough* She had no openings until early January, and the course needs to begin within 3 weeks of the surgery. It made me chuckle to realize that my poor nephrologist had just been read the riot act by a nurse. I can’t imagine his reaction … he’s a very calm, soft spoken, and wonderfully laid back sort of person. Seriously though, I’m really fond of him, and felt bad that he’d gotten in trouble.

So, the date was reset to December 17. I have to see the surgeon all over again in the first week of December; that will probably provide me with even more information, although I must admit that he was very communicative when I saw him the first time. One of the things that I expected to hear from him, but still came as a rush when he actually said it, was: “From today on, this arm (my left) is mine, and the people who do the dialysis. It’s not yours any longer.” He continued with the following instructions: no blood pressures taken, no blood drawn, and no watch or other jewelry on that side. I’m still trying to get used to looking at my right wrist for the time …

The whole idea reminds me one of those charts of cows with all the parts named according to where they’ll go once the mooing is over … with parts of me seeming to only be on loan! My son told me that I should charge a usage fee for the arm I still have to carry around, but can’t use anymore. ;o)

There have been other changes which are not related to ESRD. I’ll blog about those at a later time, because this post is already long enough.

I want to thank those who have kept coming back, month after month, when I wasn’t posting. The comments, the thoughts, all meant far more than I can express. Thank you again.