I wish I knew when to expect good days and when to expect bad days. Now that I am on dialysis, I should be having all good days, right? Well that's not how it has been for me. Maybe I just need to give it more time. Maybe it has something to do with what I eat. Maybe it has to do with how active I am. Maybe it is related to the strength of the dialysis solution I use. Maybe it's a combination of all these things.
I have had a few good days lately, but then Bam! yesterday was a bad day. I had no energy. I woke up and got the kids ready for school then went back to bed. I read for a few minutes, then fell asleep until 1:30 in the afternoon! I guess my body needed the rest. Once I was awake, I couldn't seem to do much before feeling completely wiped out. I especially felt it in my arms. My arm muscles felt fatigued and limp. Today seems to be shaping up the same way so far.
One good thing is that the other day I found a couple of online discussion forums for dialysis patients. As I was reading through some of the posts, I really felt like I could relate. I felt like I wasn't alone. There are other people out there who feel exactly like I do! Wow, it was nice to discover these.
I Hate Dialysis.com
Dialysis Uncensored
~Jenny
Thursday, September 27, 2012
Wednesday, September 19, 2012
Sept 19 Update
Hey there!
Friday, I had my second epidural injection procedure for the herniated disc in my back (L5S1). They put me to sleep and stuck a big needle into my spine. It leaves me feeling pretty tender for the week following the procedure. I can't seem to find a comfortable position where no pressure is placed on my back. Oh, and on top of that, Monday I had my monthly Aranesp injection. That is to stimulate my bone marrow to produce more red blood cells. THAT injection also makes me feel very owie. It makes my bones ache. And again it is hard to find a comfortable position. Each bone that is being sat on or laid on begins to ache after a few minutes. What I really need is an anti-gravity chamber to hang out in for the time being. Hmmm... as soon as I finish this post, I'm going to google that.
Anyways, dialysis is going well. I am getting used to it, and have gotten pretty quick about the set-up each night. I have also gotten used to the earlier bed time, even though I don't actually go to sleep until around 11:30 or so each night. (I like to read in bed. And the books I have been reading are those can't-put-down kinds.) I get hooked up to my cycler around 9:30 or 10:00 each night so that it can finish by the time I have to wake up and get the kids ready for school.
My kids are so great. They are very worried about me, and take a great interest in my dialysis. They help me get the machine set up, and also help me with the nightly vital signs that I must do. When we say our prayers each night, they also add "And may God find the perfect kidney for my Mom. Amen." Hayden has been coming over and rubbing my back for me to make it feel better. A few weeks ago, Celena set up a lemonade stand in the neighborhood. She had Hayden and her friend Mackenzie to help with it. They shouted at each passing car "Help my Mom with her doctor bills. Lemonade for a good cause!" They raised about $15.00, which they gave to me to help pay my doctor bills. (Have I mentioned how awesome my neighbors are? I am blessed to be in such a wonderful neighborhood.) When I tried to refuse the money, Celena cried and said that's why she did the lemonade stand, and she didn't want the money. So, I had to take it. Such a sweet little girl. All of them were such good sports, and so generous. They didn't expect to keep even a dime. What great kids!
Friday, I had my second epidural injection procedure for the herniated disc in my back (L5S1). They put me to sleep and stuck a big needle into my spine. It leaves me feeling pretty tender for the week following the procedure. I can't seem to find a comfortable position where no pressure is placed on my back. Oh, and on top of that, Monday I had my monthly Aranesp injection. That is to stimulate my bone marrow to produce more red blood cells. THAT injection also makes me feel very owie. It makes my bones ache. And again it is hard to find a comfortable position. Each bone that is being sat on or laid on begins to ache after a few minutes. What I really need is an anti-gravity chamber to hang out in for the time being. Hmmm... as soon as I finish this post, I'm going to google that.
Anyways, dialysis is going well. I am getting used to it, and have gotten pretty quick about the set-up each night. I have also gotten used to the earlier bed time, even though I don't actually go to sleep until around 11:30 or so each night. (I like to read in bed. And the books I have been reading are those can't-put-down kinds.) I get hooked up to my cycler around 9:30 or 10:00 each night so that it can finish by the time I have to wake up and get the kids ready for school.
My kids are so great. They are very worried about me, and take a great interest in my dialysis. They help me get the machine set up, and also help me with the nightly vital signs that I must do. When we say our prayers each night, they also add "And may God find the perfect kidney for my Mom. Amen." Hayden has been coming over and rubbing my back for me to make it feel better. A few weeks ago, Celena set up a lemonade stand in the neighborhood. She had Hayden and her friend Mackenzie to help with it. They shouted at each passing car "Help my Mom with her doctor bills. Lemonade for a good cause!" They raised about $15.00, which they gave to me to help pay my doctor bills. (Have I mentioned how awesome my neighbors are? I am blessed to be in such a wonderful neighborhood.) When I tried to refuse the money, Celena cried and said that's why she did the lemonade stand, and she didn't want the money. So, I had to take it. Such a sweet little girl. All of them were such good sports, and so generous. They didn't expect to keep even a dime. What great kids!
I saw an awesome neurologist at the Emory Movement Disorder clinic. I was referred to him from my local neurologist because of the problem I have with my hands. He told me they are called "negative myoclonus" and it should get better over time since I am now on dialysis. I waited 4 months to get in to see this doc, and he didn't have anything for me except to give it time. Ha! But at least he knew what I have and why. It's from the uremia (high level of toxins in my system from the kidney failure). The nerve endings are irritated from the toxins and it causes repetitive momentary muscle failure in my hands. My hands "fall down," thus being *negative* myoclonus. If my muscles jerked upwards, it would be *positive* myoclonus. He also said the uremia has caused the neuropathy in my legs, and it should also improve the longer I am on dialysis. That's good to know! The problem is that I am impatient. My leg pain (neuropathy) has been going on for over 3 years now. And the hands have been bad for about a year and a half. The doc said that neither of my ailments started overnight, so they won't go away overnight either. So, I must just sit back and wait...
More later. Love to you all.
Jenny
Saturday, September 1, 2012
Catching up
I'm bad.
I started this blog to not look like I was fishing for attention, or sympathy or whatever on Facebook. But I haven't written anything on here in a really long time. I will do better...
In July, I had surgery to place my dialysis port. It's in my abdomen a few inches away from my belly button. It doesn't just go straight in though. They "snaked" it through my skin/muscle layer so it goes up and back down like an upside-down U. THEN it goes into my abdominal cavaty (peritoneum). The cord that hangs out of me is about 18 inches long and it has a special ending that attaches to the bags of fluid (dialysate) or attaches to my cycler machine. There are 2 ways that I can do dialysis: during the day- called "Continuous Ambulatory Peritoneal Dialysis or CAPD. The second way is just called nighttime dialysis and it uses a machine to push and pull fluid in and out of my belly. The second is what I do. Both kinds are done every single day. No days off!
My machine is called a cycler. So I attach my bags of dialysate to the cycler each night and hook up the tubing, which ultimately connects to me. Once I am connected, I can only go as far as the tubing will let me. So when Hayden has one of his frequent nighttime nosebleeds, Mark has to help him. No going potty... Can't reach! Haha I better go before hooking up! And I have to have a set bedtime now because the later I hook up to my cycler, the later it finishes in the morning. No stopping it early. It runs for 8 hours (plus the time it takes to hook and unhook). So if I need to get up early for getting the kids to school, for doctor appts., etc... I need to get to bed on time. So that puts the kibosh on any late night outings.
I love doing dialysis at night since it leaves my days free. But there is a problem with the cycler: it uses suction to remove the fluid from my abdomen. Not so bad at the beginning, but once my abdomen is mostly empty, the suction really hurts! It's like a straw suctioning the last few drops of drink from your glass... It feels sharp and pinchy and hurts like nothing I've ever felt before. It all depends on where the port is laying on the inside of me. Because of the fluid I put in there, plus my bowels always moving around, the port floats around. I never know where it will be located at the end of my drain cycle. Sometimes it hurts to high Heaven. Sometimes only a little or not at all.
Right now, my dialysis prescription calls for 5 cycles of 1500ml of fluid in and out of me all night for a total duration of 8 hours. So each "dwell" time is a little over an hour. The fluid has to stay in me to work on drawing out the toxins from my body. Me being on the small body side, a liter and a half of fluid in my belly looks and feels like I am 8 months pregnant. It is so uncomfortable and stretches my belly so big! But thankfully right now, I am drained empty at the end of all the nightly cycles. So I get to be empty during the day. As my disease continues to progress, my prescription will continue to change and may include leaving some fluid in during the day. Some people also have to do manual exchanges of fluid during the day. I don't want that!
I have three different strengths of solution to choose from each night. I select them based on my blood pressure and some other factors. So my whole front room downstairs has become my stockroom. I have many many boxes of solution, and get shipments each month to replenish the solution and cycler supplies (tubing, masks, tape, gauze, clamps, caps for the end of my port, etc.) Nothing is re-used. I go through a lot of supplies every day and since they connect to the inside of me, everything must be sterile. This leaves me with a plethora of empty boxes! Right now, we are saving them for Hayden who likes to build forts out of them or stack them up and karate-chop them down! Ha!
Well the whole reason I started this post was to talk about the epidural injection I got in my back yesterday for my herniated disc. I am feeling really owie today.... I guess I'll save that post for two weeks from now when I get my second epidural injection. Sheesh! I am a mess.
Peace, love, and pain meds,
Jenny
I started this blog to not look like I was fishing for attention, or sympathy or whatever on Facebook. But I haven't written anything on here in a really long time. I will do better...
In July, I had surgery to place my dialysis port. It's in my abdomen a few inches away from my belly button. It doesn't just go straight in though. They "snaked" it through my skin/muscle layer so it goes up and back down like an upside-down U. THEN it goes into my abdominal cavaty (peritoneum). The cord that hangs out of me is about 18 inches long and it has a special ending that attaches to the bags of fluid (dialysate) or attaches to my cycler machine. There are 2 ways that I can do dialysis: during the day- called "Continuous Ambulatory Peritoneal Dialysis or CAPD. The second way is just called nighttime dialysis and it uses a machine to push and pull fluid in and out of my belly. The second is what I do. Both kinds are done every single day. No days off!
My machine is called a cycler. So I attach my bags of dialysate to the cycler each night and hook up the tubing, which ultimately connects to me. Once I am connected, I can only go as far as the tubing will let me. So when Hayden has one of his frequent nighttime nosebleeds, Mark has to help him. No going potty... Can't reach! Haha I better go before hooking up! And I have to have a set bedtime now because the later I hook up to my cycler, the later it finishes in the morning. No stopping it early. It runs for 8 hours (plus the time it takes to hook and unhook). So if I need to get up early for getting the kids to school, for doctor appts., etc... I need to get to bed on time. So that puts the kibosh on any late night outings.
I love doing dialysis at night since it leaves my days free. But there is a problem with the cycler: it uses suction to remove the fluid from my abdomen. Not so bad at the beginning, but once my abdomen is mostly empty, the suction really hurts! It's like a straw suctioning the last few drops of drink from your glass... It feels sharp and pinchy and hurts like nothing I've ever felt before. It all depends on where the port is laying on the inside of me. Because of the fluid I put in there, plus my bowels always moving around, the port floats around. I never know where it will be located at the end of my drain cycle. Sometimes it hurts to high Heaven. Sometimes only a little or not at all.
Right now, my dialysis prescription calls for 5 cycles of 1500ml of fluid in and out of me all night for a total duration of 8 hours. So each "dwell" time is a little over an hour. The fluid has to stay in me to work on drawing out the toxins from my body. Me being on the small body side, a liter and a half of fluid in my belly looks and feels like I am 8 months pregnant. It is so uncomfortable and stretches my belly so big! But thankfully right now, I am drained empty at the end of all the nightly cycles. So I get to be empty during the day. As my disease continues to progress, my prescription will continue to change and may include leaving some fluid in during the day. Some people also have to do manual exchanges of fluid during the day. I don't want that!
I have three different strengths of solution to choose from each night. I select them based on my blood pressure and some other factors. So my whole front room downstairs has become my stockroom. I have many many boxes of solution, and get shipments each month to replenish the solution and cycler supplies (tubing, masks, tape, gauze, clamps, caps for the end of my port, etc.) Nothing is re-used. I go through a lot of supplies every day and since they connect to the inside of me, everything must be sterile. This leaves me with a plethora of empty boxes! Right now, we are saving them for Hayden who likes to build forts out of them or stack them up and karate-chop them down! Ha!
Well the whole reason I started this post was to talk about the epidural injection I got in my back yesterday for my herniated disc. I am feeling really owie today.... I guess I'll save that post for two weeks from now when I get my second epidural injection. Sheesh! I am a mess.
Peace, love, and pain meds,
Jenny
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