Two Weeks Later

It has been 2 weeks since I started dialysis so I thought I would share some thoughts about the experience.

“OUCH!”
Over the last two weeks I feel as though I have done nothing but complain about how much my arm hurts. But my arm has changed over the last two weeks. Some of the pictures are a little blurry, but here is my arm over time:

Jan 17

I had my surgery for my fistula last April, and this is what my arm looks like after that has healed and before anyone started poking it. At the time I thought it looked a little big, especially where the fistula is. But it’s not easily seen in the picture. In real life, if you look at it closely, you can see my pulse.

Jan 20

After my 2nd treatment the fistula blew and my arm swelled a little. This is the day after. The blood had leaked into the arm, but you can’t really see it yet. It had been iced all night. While it was painful, it didn’t look really bad, yet.

Jan 21

some of the bruising is starting to show.

Jan 24

now the bruising is showing up and looks as painful as it feels.

Jan 31

Six treatments later and three days after my fistula blew for the second time. It blew again on my last treatment which was Saturday. Saturday’s treatment was not great as far as I was concerned because my fistula blew and I was in pain during the four hours I was hooked up to the machine. (After icing my arm, a nurse needled me lower down and so I still had my treatment). Therefore, I didn’t get my homework done that I needed to do. You can see where the bandaid was on my arm. Interesting.


“I keep almost passing out, but nobody is sure why.”
At the end of my first treatment, the nurse asked if I would hold my needle site. While I was holding it, I felt light headed like I was going to pass out. I thought maybe it was because I didn’t get all my blood back, and I couldn’t really handle holding my site because I had images of doing it wrong and bleeding to death. Yes, I know. A little overdramatic. My imagination runs away on its own sometimes.

Then there was a treatment where I was holding my own site (I realize I am NOT going to bleed to death), but then I felt really weak and like I was going to pass out again. I tried to call for my nurse, but even though it felt as though I was yelling, my nurse said I was calling out so quietly, she barely heard me.

Finally, on Saturday while I was still hooked up, but near the end of the treatment, I felt awful again, so the nurse came and lowered my head. My blood pressure dropped to 91/39. I didn’t end up passing out, but it was really hard to not want to go to sleep. That tired me out.

The reason these episodes are confusing is because I am not having any fluid taken off. If they were removing fluid, then there may be a reason for my blood pressure to drop. But all that is happening is my blood is getting cleaned. All I can really say at this point is that I hope my blood pressure stops dropping like that. It’s a really awful feeling, and I am afraid I am going to lose bladder control and wet myself while I am sitting there. I do not want to go home in peed-in clothes. Yuck.

Other Changes
I think today was the first day I noticed that while I am tired it is a different kind of tired. It feels like the lack-of-sleep tired; not the I’ve-slept-for-eight-hours-but-still-wake-up-exhausted tired.

I also noticed that I am wanting to eat more meat. I’ve never been a huge meat eater, but the last while all I have really wanted to eat are light things, like vegetables. Now I am craving hamburgers and chicken.

I am away from home so much. I feel like it is unfair to Bruce. It seems to me as though he is pretty much single-parenting. My family comes every night I am getting a dialysis treatment to see me at the hospital, and I still read a chapter of Harry Potter to the kids every night. But for the most part I am feeling like a useless parent.

I don’t know how my son is doing with all this. Almost every day he says he wishes I didn’t have to do dialysis. I know he doesn’t like change. He used to say all the time that he wished I wasn’t in school. We are trying to help him as best we can. I just don’t know if we are or not. I guess we’ll find out in 20 years or so.

Conclusion
Overall, this is not normal yet as we are all in transition. And for those who have asked if there is anything you can do, I ask that you would pray for us. Don’t be afraid to give me a hug if you see me. Hugs are wonderful. And share with me what is going on in your life, too. Sometimes I feel so self-centered. I’d like to know how you are doing, too. We are all on a journey, and I would like to share it with you.

After the 5th

It’s no longer the beginning
But it’s not the end
A change that was coming
But a surprise none-the less

Shock, grief, resignation, acceptance
Feelings flow over
Without being identified
Getting all muddled up
And mixed together
Like a soup or a stew

But it’s not really hot
And it’s not really cold
It’s in the in-between stage
Not young, not old

A part of me wants to embrace it
And a part wants to rebel
What kind of ending will this story have?
Do I want to know?

This will end the way all things tend to end
It will stop being new
It will become “normal” and “routine”

But what I am really waiting for
What I am afraid to hope for
Is the day I will say,
“I feel so good now!
I had forgotten what good felt like.”

And now that I have said it out loud,
I am afraid that day will not come.

After the 4th Dialysis Treatment

I feel like I am not really me. I know that sounds like something out of a science fiction story, but I am not sure how else to describe how I am feeling.

As I was walking to class this morning, it felt as though I was willing myself to walk, but it sort of isn't me walking. My head feels light and foggy. My limbs are kind of numb. Not like when you cut off the circulation and they are tingling. It's more like an anesthetic - everything is surreal. I am performing these actions, but it is a little like going through the motions. I keep going because this is what I have always done.

No, I am not drugged. I almost wish I was. My arm hurts. My back hurts. I ache all over. And I want to sleep but can't.

This makes me glad that my life is fairly routine. I know what is coming and I can keep going. I feel like this whole dialysis thing is a huge adjustment. I think before I started I assumed that it would just become the new normal. But it is not feeling normal, yet. I know, it has only been one week. And I know that I was told it would be about a month before I noticed an improvement in the way I feel. But somehow that doesn't stop my expectations that I should be able to just keep on going.

In a way, I guess that is what I am doing. It is just that I am going in a dream. I wonder what my life will look like when I wake up?

Treatment #3

I am not feeling well. I think it is from the dialysis treatment I had last night, but I am not sure why. My understanding is that my not feeling well would be expected if I were getting fluid taken off with my treatments, but I am not. I still pass fluid on my own. The dialysis is only to clean my blood.

My third treatment went well. It was my first 4-hour session. The needle went in without any problems, and my machine didn’t clot up at all. I say “the needle” because even though this was the third treatment, only one needle is being used instead of two. They are going to do this for a week to let my arm heal.

It feels like my whole week has been consumed with starting dialysis. I suppose it kind of has. For the last 4 out of 5 days, I was at the hospital. It will be nice to have a two-day break.

Many people have asked me how I am going to manage continuing with school and work with being on dialysis. I am hoping it will eventually just become routine and that I will feel better. The doctors and nurses have said it will be about a month before I start to feel an improvement. So I guess in the meantime I will just hang in there and ride it out.



PS - I found out the gentleman from the first night who didn’t look very well died the next day. His name is Rene, for those who wish to pray for him and/or is his family.

My 2nd Dialysis Appointment – Part II

When I was told I had to come back for dialysis the next day, I was a little concerned about how busy my day would be. I had class in the morning, work right after class, and then had to get to the hospital by 5 for my treatment. I hadn’t planned to drive myself to dialysis this soon, but that was how it was going to have to be seeing as my schedule, and Bruce’s, were busy. Everything would be fine so long as I remembered to bring everything I needed for the whole day.

I really wish I handled surprises better than I do. I hate surprises. When I was younger I always wanted a surprise party. But the only time I ever had a surprise party thrown for me, I had a hard time enjoying it because I wasn’t prepared for it. I told a friend of mine that I worried about being a good lawyer because I don’t think fast on my feet. I need time to process things and like to be prepared. She said that was a great thing because the best lawyers are not surprised, but are actually well prepared. But I think there is still some value to being able to react well to surprises.

I was surprised when I got a call over lunch at work from the hospital saying there was some miscommunication and that the doctor had wanted me to come for a treatment in the day not the evening. Therefore, I was supposed to be at the hospital for 12 noon, and it was already 12:30. The reason was because the doctor wanted to look at my access in case it was not usable or if they couldn’t needle it, there would be other options available. Whereas if I went at 5 and my access couldn’t be needled, it would be the weekend, and nothing could be done over the weekend. She wanted to make sure I wouldn’t get too sick. But having to leave work was not good as there was unfinished work that had to be done. That meant someone else would have to do it, and that didn’t seem fair to me. Bruce tried to point out to me later that there was nothing I could do, but I still felt like I was at fault. Seeing as there really wasn’t much else I could do, however, I made arrangements at work and headed to the hospital.

This time everything went really well. My arm is still swollen and hurts, but I was taking Tylenol for the pain. One of the nurses from the first treatment was there and consulted with my nurse about needling my access. They decided to just use one needle again and went higher up my arm to leave the sore part alone. They also discussed how it appeared that it was better not to put a tourniquet on, but rather had one nurse just hold some pressure above the site to help the nurse who was needling. They actually discovered that if there was too much pressure, they would lose my pulse. This time the needle went in and everything was fine.

I was a little creeped out when the nurse had me hold my tubes of blood. They were warm. We had a discussion how she thought that was fascinating. I do not. I think it’s not going to be very long before all of them at the dialysis unit get tired of hearing me say, “There is a reason I went into law and not medicine.” I think I may stop saying it, as I’m getting tired of it! Then again, maybe I won’t.

There isn’t much more to say about the treatment. It was smooth sailing from there on in. The doctor came, and she was super nice. I talked with the social worker for a while, and she was interested in hearing about law stuff which was cool because I love talking about it. There was a very charismatic nurse, and he made me feel comfortable even when I was scared. I was on the machine for three hours, and it didn’t clot up at all. That was without the medication to prevent clotting. They didn’t want to give it to me because of the huge bruise on my arm. They want it to heal.

When everything was done, I packed up and headed home. I didn’t feel like passing out, but once I was home I was really tired. My son asked if I would always be tired when I got home from dialysis. I said I don’t know, as this is only my second time. But I most likely will be, anyway, because my treatments will normally be in the evenings, so by the time I get home, it will be bedtime.

I spent the evening resting with ice on my arm. The doctor said to keep icing it over the weekend. My treatments for the next week are also going to be one-needle treatments in the hopes that it will give my arm a chance to heal. But I still have to go for dialysis again today. Two days in a row. Lucky me.

There was a nice surprise for me when I got home - some beautiful flowers and a card from my co-workers. I really like everyone I work with. There are so many blessings in my life. And I am thankful for each one.

Thank you, for your thoughts and prayers. They are truly appreciated.

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.