My 2nd Dialysis Appointment - In 2 Parts

My arm hurts. My arm really hurts. Like after surgery kind of hurts.

So I thought I was going to be a trooper. I survived the first treatment, and other than my blood clotting, everything was fine. This time they would put the blood thinner medication in and we would just truck along, right?

Wrong. And it had started out so well . . . . .

As soon as I got up to the dialysis unit, the nurse told me what bed I was going to and let me go in. I weighed myself and found my bed. I was even excited because it was kind of by itself in this little cubbyhole type room.

That was going to be perfect for when my family showed up. We’d have a little privacy and not disturb anyone around us when I read Harry Potter to the kids (we are on the 6th book - The Half-Blood Prince). I set out my laptop, textbook and other school paraphernalia while I waited for the nurse(s) to come hook me up to my machine. I was a little nervous, especially when one nurse says to me, “we’ve been a little crazy around here today,” but that happens, and everything should still be okay. Or so I thought.

The next nurse comes, and I guess since this isn’t my first time I don’t need the kid-glove treatment anymore. Okay. I still feel like a newbie, but maybe that’s not the way it works here. That’s fine. I was looking forward to my family coming, anyway, so the sooner I can get hooked up to that machine, the better.

Well, first of all, this nurse didn’t seem to really look at my fistula access the way the other nurses had. She just put that tourniquet as tight as she could around my arm and poked with the needle. OH MY GOODNESS!!!!! Did that ever HURT! I had put the cream on, so I thought it shouldn’t hurt. It didn’t last time! I don’t know what she was doing because I wasn’t looking. The way I cope is by not watching. A little ostrich-like, I know, but, hey, it works. What it felt like was that she was digging around in my arm. And when she couldn’t find what she was looking for, she tried again. I don’t think she poked me more than once, but I don’t know for sure. What I do know is that I started crying. I tried really hard not to. But I couldn’t stop myself.

What ended up happening is the blood leaked into the tissue of my arm. I heard that “it” was blown. I assume they meant my fistula. And now I have this huge lump in my arm. And the lump really hurts. On the plus side, the nurse mentioned that even as she was needling me I was starting to clot. So I figured I wouldn’t bleed to death, anyway.

Eventually I started shaking uncontrollably, and so a nurse brought me a warm blanket. Then my family showed up, which made me feel much better.

My kids are a soothing balm to my soul. What a joy and comfort they bring me. I am so lucky to be their mom.

But I am beginning to think that there will always be people around to keep me humble. A gentleman showed up and started telling me how they’ll have to send me for surgery. He was mostly harmless, but it was still a little disconcerting to hear some of the things he was saying. Particularly as I was not in a great frame of mind. A nurse rescued me, though, and mentioned to him that maybe he should let me rest. He met up with us as we were heading home and said he had been scolded for scaring my kids. I think he frightened me more than them!

We had to wait a while before they let me go even though I wasn’t hooked up to the dialysis machine. They were checking my blood to make sure they could let me go and didn’t need to try needling me again. Since my potassium levels were okay. I was sent home. But my creatinine was at 535 - which is high - and so I was asked to come back to the hospital the next day rather than wait until Saturday. So I was booked for 5 the next day (Friday) and I planned to make the next day’s trip solo.

My First Dialysis Treatment

There is a reason I decided early on I didn’t want to do anything in medicine. It’s not just because of the shift work that is usually involved, but because I hate needles and don’t really like the sight of blood very much. Oh, I can handle a paper cut. And if my kids ever get nosebleeds, I can deal with those. But it was a whole other experience to see tubes filled with my blood lying across my lap.

Let me go back a step or two . . . . .

For my first treatment, I had my husband drop me off at the hospital. First because it is absolutely frigid temperatures outside (in the minus 40s with the wind chill), but also because I didn’t know what I would feel like when the treatment was done.

There were a LOT of people waiting to get in for their treatments. Treatment times are at 7 a.m., 12 noon, and 5 p.m. I had the 5 p.m. time slot, which is not even the busiest time, I was told. I don’t know how many spaces there are in the unit, but I was in bed 27, so there are at least that many. I noticed there were some chairs and some beds. I overheard one lady saying that she wanted to make sure she was in a bed because last time she was in a chair, it nearly killed her. I had a bed, but am wondering if I would find the chair more comfortable, as I asked to be sitting up so I could read. Apparently the hospital is trying to move toward having all chairs. I’ll be keeping an ear out to hear the reasoning for that. I think if the man across from me had to sit in a chair during his treatment, he would have been even more unwell than he already looked. But I’ll get back to him in a minute.

Initially when I was told my treatments would be four hours, I assumed that meant I would be at the hospital from 5 to 9. Four hours, right? And then I was told my first treatment would only be two hours, I assumed I would be done about 7. See? I can do math! :) However, I was wrong. What it really means is that I was to be hooked up to the dialysis machine for two hours (and eventually four hours), plus the time at the beginning – which includes waiting, weighing, adjusting, poking and prodding (the first time, anyway) – and the time at the end – which includes pressing, waiting, packing more prodding (the first time, anyway) and weighing (yes, I get weighed at the beginning and the end, three times a week. What every woman wants. NOT!). So it is not surprising that my husband calls at about 7:30 asking why I haven’t called him yet to pick me up, and that is because I wasn’t done yet.

But again, I’m getting ahead of myself. . . .

Everyone was exceptionally nice. Well, almost everyone. All the nurses and staff were exceptionally nice. There was a lady who was not quite so nice. She was sitting with the man across from me. He looked very ill and she would make comments that she was not sure if he would make it through the night. She mentioned he was hallucinating, and he was mumbling a lot. He was definitely not in any shape to have a conversation with me. She was very concerned about him. But that isn’t why she wasn’t nice. That just explains her sarcastically said comment later in the evening which was, “Well, at least someone is happy here,” when I was joking and laughing with the people around me. The funniest (and not-so-nice) comment, though, was as I was getting onto my bed, she says to me, “You don’t work out, do you?” Now, that’s true. I don’t work out. But it was shocking because she was the same size or larger than I am. And I couldn’t believe she had actually said that out loud to me. I was very thankful that she decided she needed to go get a coffee or something, and was gone for a fairly lengthy time after that.

The nurses were very nice, though. They were willing to explain to me anything I wanted to know, and stopped explaining when I mentioned there is a reason I went into law and not medicine! They were very understanding about this being my first time, and were friendly and joking with me. I especially liked the male nurse who was there when I was first being hooked up. We were all picking on him, and he was dishing it out – all in good fun. I hope he is there for longer sometimes when I am there.

To begin the treatment, they started me out with just one needle instead of two.

I had put the freezing cream (Emla) on my arm and wrapped it with plastic wrap, but the wrap slid down and so only the lower part of my fistula was frozen. The nurses decided since it was my first time, they would try just using one needle, and tried to explain to me the process of how that works, but I am afraid it was over my head. It was probably similar to when I try to explain a law concept to my non-law friends, it makes sense to me but everyone else’s eyes glaze over. I had the glazy-eyed look.

Because of the way my bed was set up, the tubes filled with my blood were running from my left arm, across my lap, into the machine on my right, and then back again. I have had an IV before, but it was quite a different experience to see my blood in tubes on my lap. I had to put my blanket over the tubes so I wouldn’t see them. I know. I am a suck. Did I not say there is a reason I went into law and not medicine?

I mostly didn’t feel the needle in my arm. I did a little, but when I described what I felt to the nurse, she said it was normal and not to worry. I was supposed to watch to make sure the needle didn’t slip out of place – that would be bad. But it didn’t.

Part way through my treatment, my priest, Father Bernard, and his wife come to visit me. It was such a nice surprise, especially since I hadn’t thought to see if anyone would be there with me during my first treatment. I knew that eventually I would be able to have visitors, and had been told they should wait and come after the first 45 minutes and leave before the end of the treatment as those are busy times for the nurses getting people on and off the machines. You see, I was using my math skills, and thought if someone couldn't be there the first 45 minutes or the last 45 minutes, that doesn't leave much time to be at the first treatment if it is only two hours (half an hour with a visitor, right?). I had expected I would have to do it alone, but am very glad I did not have to. I kind of wish someone had suggested to me when I was told my dialysis date that I could (or should) have someone with me the first time. In hindsight it might have seemed obvious to bring someone anyway, but I really just didn’t think of it. Yet, it really helped to have a familiar face there. In a world of strangeness, it was comforting to have a friend by my side.

It was especially nice to have had someone come to see me, since everything did not go smoothly with my first treatment. My machine started beeping about half an hour before I was supposed to be done. There was some commotion, and the nurses realized that my blood was clotting in the machine. My nurse tried to keep me going a little longer, but gave up when she realized that it was clotting too badly. Around this time she asked if I have ever donated blood before, and I said, “No.” “Well, you have today,” was her reply. The only problem is, it was going in the garbage. Too bad.

The result was that I felt a little light-headed when I was done. I thought I was doing well until she took out the needle and told me to hold the gauze where the needle was. I could feel my pulse, and the combination of losing the blood, not liking blood, and feeling my pulse made me feel like I was going to pass out. I didn’t, because they lowered my bed and gave me a cool cloth for my head, and my nurse held the gauze for me. I kept apologizing, but she reassured me that it was okay, and I was doing great. I felt silly, though.

In the end, I was okay. I would have liked to have been told that they did some extra tests when it is your first time, including having swabs inserted into various orifices of my body. When I got home, I was brain dead. I had tried to write down my experience, but couldn’t seem to get any words to string together. I am guessing it is because I had been running mostly on adrenaline and crashed after I got home.

So, while I am not a “pro,” I do feel a little more prepared for my treatment tonight. Although I get the double poke, this time. At least there won’t be any swabs being stuck in places they shouldn’t be.

The First Day

So..... today is the day. I have my first dialysis treatment in a few hours.

First, I just have to say that I feel as though I have the most amazing and wonderful people surrounding me and my family. THANK YOU for all your support, whether it has been here or on Facebook or in person. I hold onto the encouraging words that are given to me like a life line. You have no idea how helpful they are.

Second, I am not sure if I am nervous, anxious or downright terrified about what I am going to experience this evening. I keep saying that I know, intellectually, that everything is going to be okay. But it is kind of like when I want to say something in a group or in class, and there is that nervous feeling in the pit of my stomach. And generally, in spite of that feeling, I put up my hand to say something anyway. If I just plow through it, then it’s done and I can move on. That is a little how I am viewing tonight. No matter how my stomach feels, I’m going to put out my arm and plow through it.

Today is only a two hour treatment. Eventually I will be doing four hours a session, three times a week. Someone likened it to a part-time job. Yeah. Sort of. But apparently I will be able to do school work through the process, so that’s good. Maybe it’s a good thing that I have been working while going to school. It gave me practice at time management. :)

An hour before my treatment I have to put a cream on my arm to numb it. I have been told they will put two needles in my fistula access (I had the surgery for my access last year in April). I tried taking a picture of my arm to show you the fistula, but it doesn’t show up very well. My arm looks lumpy where they joined the artery and vein together. And “the lumpy” has been getting bigger over the months – which is good and normal, I am told.

I’ll have to bring my own blanket. And my books to read, of course. I was wondering what I was going to do in the summer when I don’t have school work, but then realized that between the TV shows I want to watch and the books I want to read for fun, I should be okay for a while. And a friend said if I ever wanted company, she would be more than willing to come visit. An excuse for visiting..... I can live with that! Do you think they’ll let me arrange parties at the clinic, too? I always say I’m looking for excuses to have a party. Maybe not so much today, though. Or the next few weeks. I am supposed to start feeling better in a month or so.

If I feel up to it, I’ll let you know how I’m doing after my treatment.

PS – I hate needles.

Another Change. Another Beginning

It has only been 2 days…… and I already feel like my whole life has changed.

I had a doctor’s appointment Wednesday. It wasn’t anything unusual in that I have been going to the Chronic Kidney Disease Unit for years already. It has been no secret that I live with PKD (polycystic kidney disease), and that I am regularly monitored for kidney function. Sometimes when people find out, they are surprised. I guess because I have a chronic illness I shouldn’t be raising a family, working and going to law school. I’ll admit, some days it feels a little crazy, but I assume everyone’s life is to some extent.

And I have known that I am in kidney failure. I have said it enough times to people. But it didn’t seem like a big deal. Yes, I knew dialysis was coming. I knew it would happen “some day.” I just didn’t really believe that “some day” would be so soon. I really thought it was further away. But it’s not. The day has come. Tuesday, in fact, will be my first dialysis treatment.

When they told me Wednesday that it was time and they would book something for me within the next week or two, I was fine. It was still “some day.” But today I got the call, and I start on Tuesday -- my first treatment. All of a sudden it’s real. This is really happening to me. I am really going to have to readjust the way I live my life. Everything will be planned around my treatments.

So, now what is the etiquette for this? Do I have to tell people personally? A part of me wants to tell everyone I see, and a part of me doesn’t want to really talk about it at all for fear that I’ll start crying. I guess that is why I came here. A “safe” place to share.

The nurses kept asking me how I was doing. I said I honestly didn’t know if I was handling it well, or if I was in shock. Overwhelmed may be a good way to describe how I’m feeling. There is so much to arrange. So much to re-arrange. So much to consider and still to do.

I have a friend who is concerned that I don’t know how to say “no” and that I’ll take on too much, still. I suppose I am a little bit of an over-achiever. Sometimes, anyway. I think it is because I am afraid I will be seen as being lazy. So will I be lazy if I can’t keep doing all the things I do and be on dialysis? I know already there will be some who will say there is no reason why I can’t keep doing everything. I would just need to make sure I manage my time properly. Do those people realize there are times when I would love to just say, “to heck with everything” and throw up my hands and give up? When is enough enough? When is it okay to say, “I can’t do that,” and not have someone think less of me?

I’ll tell you something, though. There is no way I am going to give up on my family. And there is no way I’m going to quit school. I am going to get my law degree, and I am going to do my best to keep a healthy family in the process. And my faith is my anchor, so….. that is my starting point. Every day is a blessing, as are the people in my life.

Thank you, for being a blessing in my life.