Most days I'm ambivalent about having CP. It makes life hard, but I've nerver known any different. Besides, everyone has a hard life in one way or another. I don't have the market corned on hardship by any means.
Today I am grateful for CP. It gives me the chance to be immensley proud of myself multiple times a week. I get to feel the thrill of accomplishment when I manage to do something I either thought was impossible or that I had thought too hard to keep trying. The moments of pure joy are found in unlikely places. The come from doing things most would consider mundane. When I successfully fish my glasses out from behind my bed, I have a small party. When I finally master making peanut butter and jelly with one hand, there is a victory parade. When I am able to make my bed, including the bottom sheet, I shout it from the rooftops. I don't care that it took an hour and three brooms to extricate my glasses, or that there's peanut all over my kitchen and myself. The point is I did it by myself.
Today I got to experience this feeling three times in the space of an hour. All I did was take a shower. This was my first independant shower using a cool new bath chair that my mad-inventor dad built. It uses an air compressor and a piston to magically get my legs over the edge of my bathtub and an air bag to raise the seat up high enough. It is awesome. I've been crunched for time to actually use it between working full time and being tethered to TPN for 18 hours a day. Today, I had some free time at lunch and have been craving a real shower. I went for it. It was glorious. I transfered to the seat, pushed myself back, clicked my seatbelt and flipped the switch that slowly drew me over the middle of the tub.I flipped the second switch that slowly inflated the airbag under the seat so that when I used my body to turn the seat, my feet would clear the edge of the tub. Then I donned the plastic sleeve that protects my PICC line site, and went to town. When I was done, I reversed the process, feeling as though I had stuck the landing in an Olympic vault as my feet lightly brushed the floor.
So thank you, broken brain for making me feel like a little kid again.
Wednesday, January 16, 2013
Sunday, January 13, 2013
Life as a Robot: Early Impressions of Life on TPN and Other Things
So, a lot happened for me in medical land the last couple weeks. I had a PICC line placed, a stimulator check and started Total Parentral Nutrition all in the last week and a half.Crazyiness. As a result I have become home bound in order for my insurance to cover the nursing care I need to make it all work.
PICC Line Placement
A PICC line is a type of central IV. It is placed in the upper arm using ultrasound guidance. The catheter is snaked up and over into a large vien near the heart. The most painful part of the placement was when the nurse injected Lidocaine to numb my arm. It took about half an hour. I have what's called a double lumen power PICC. This just means that my line can handle a fastish infusion rate and has two endpoints. One is used to infuse my TPN every day. The other is used for blood draws. The things I wish I'd known before I got my line are that you need to protect the line when you shower, and long sleeved shirts should be banished from your wardrobe while you have line. The showering thing proved tricky for a while until I found a cast cover I can do myself. The t-shirt thing took me all of two minutes to discover after wearing a long sleeved shirt the day I had it placed. The longer the sleeve, the more it catches on stuff.
Stimulator Check
The afternoon of my line placement, I also saw Dr. B. to check my stimulator. Since Dr. B. works at an academic medical center, there seems to always be a new medical student for me to teach. This time, oh man. I always refer to my stimulator as a pacer when explainiung it to new people. It's just easier to understand than calling it a stimulator. So, I explained it that way to the med student. I even let him feel where my generator is. He was surprised to learn that I have been nauseous daily since October. I know you're new to the story man, but read my chart. Dr. B. was outside my exam room and the med student presented me to him. Every time the student told him I was there to check on the pacer, he very sternly corrected him. "Stimulator!" It was quite amusing. Dr. B. came in to "interrogate the generator" his words for using a programmer to check the stimulator's settings and battery life. Everything looks good. He did finally explain why he has yet to turn up the settings. My nutrition status is so poor that the device has no chance of working right now. I need to get to a better place in that regard before we can hope to get the device to work at all.
We also talked about my MALS repair. It's been six months since that surgery. Hard to believe. Anyway, when I go in to get my stimulator checked in April, I'll have another ultrasound of the celiac artery just before. He doesn't think any possible compression is causing my current decline. If the artery is compressed again, I may have an aniogram. to try to clear it. Related to the study I'm part of, he gave me the six-month post-op questionaire. The whole first page listed various phyiscal activities and asked me to rate how much my health has affected my ability to do them. Those were all things I've never been able to do. The next two asked about my emotional and social life . These were more applicable to me. The very last question was very funny. It read "My health is excellent", and asked me to agree or not. I did not.
Starting TPN
Four days after I got my line, my infusion pharmacy called and said that my TPN orders had come in and I'd be starting that day! I could look forward to feeling better and to having energy. Wednesday night, my home health nurse came and hooked me up. The solution is a nutritionally complete mixture of protein carbohydrates and fats. I get 50-ish MLs an hour hour over 18 hours. Three days a week I get some multivitamins mixed in,and take oral vitamins on the off days. Eighteen hours is a long time to move around while attached to a line and pump. I have found good ways to do things already. Aside from needing my formula changed so that I got enough dextrose, and the last couple of days of awful nausea and fatigue, I've done pretty well. Who knows what I'll see in the next several weeks.
PICC Line Placement
A PICC line is a type of central IV. It is placed in the upper arm using ultrasound guidance. The catheter is snaked up and over into a large vien near the heart. The most painful part of the placement was when the nurse injected Lidocaine to numb my arm. It took about half an hour. I have what's called a double lumen power PICC. This just means that my line can handle a fastish infusion rate and has two endpoints. One is used to infuse my TPN every day. The other is used for blood draws. The things I wish I'd known before I got my line are that you need to protect the line when you shower, and long sleeved shirts should be banished from your wardrobe while you have line. The showering thing proved tricky for a while until I found a cast cover I can do myself. The t-shirt thing took me all of two minutes to discover after wearing a long sleeved shirt the day I had it placed. The longer the sleeve, the more it catches on stuff.
Stimulator Check
The afternoon of my line placement, I also saw Dr. B. to check my stimulator. Since Dr. B. works at an academic medical center, there seems to always be a new medical student for me to teach. This time, oh man. I always refer to my stimulator as a pacer when explainiung it to new people. It's just easier to understand than calling it a stimulator. So, I explained it that way to the med student. I even let him feel where my generator is. He was surprised to learn that I have been nauseous daily since October. I know you're new to the story man, but read my chart. Dr. B. was outside my exam room and the med student presented me to him. Every time the student told him I was there to check on the pacer, he very sternly corrected him. "Stimulator!" It was quite amusing. Dr. B. came in to "interrogate the generator" his words for using a programmer to check the stimulator's settings and battery life. Everything looks good. He did finally explain why he has yet to turn up the settings. My nutrition status is so poor that the device has no chance of working right now. I need to get to a better place in that regard before we can hope to get the device to work at all.
We also talked about my MALS repair. It's been six months since that surgery. Hard to believe. Anyway, when I go in to get my stimulator checked in April, I'll have another ultrasound of the celiac artery just before. He doesn't think any possible compression is causing my current decline. If the artery is compressed again, I may have an aniogram. to try to clear it. Related to the study I'm part of, he gave me the six-month post-op questionaire. The whole first page listed various phyiscal activities and asked me to rate how much my health has affected my ability to do them. Those were all things I've never been able to do. The next two asked about my emotional and social life . These were more applicable to me. The very last question was very funny. It read "My health is excellent", and asked me to agree or not. I did not.
Starting TPN
Four days after I got my line, my infusion pharmacy called and said that my TPN orders had come in and I'd be starting that day! I could look forward to feeling better and to having energy. Wednesday night, my home health nurse came and hooked me up. The solution is a nutritionally complete mixture of protein carbohydrates and fats. I get 50-ish MLs an hour hour over 18 hours. Three days a week I get some multivitamins mixed in,and take oral vitamins on the off days. Eighteen hours is a long time to move around while attached to a line and pump. I have found good ways to do things already. Aside from needing my formula changed so that I got enough dextrose, and the last couple of days of awful nausea and fatigue, I've done pretty well. Who knows what I'll see in the next several weeks.
Tuesday, January 1, 2013
2013 Book One: Unaccountable:What Hospitals Won't Tell You and How Transparency Can Revolutionize Healthcare
I want to get back into the habit of tracking what I read this year. Here's my first review of the year. As a newly minted professional patient I have become interested in healthcare policy and the way doctors think. Unaccountable was a very interesting look at the ways hospitals and doctors hide behind their professions and lack the same kinds of accountability measures seen in other businesses. As much as some deny it, medicine is a business. Paitents are the customer. This book explores some key issues in medicine's lack of transparency and offers concrete suggestions of how to rectify them.
Issues discussed include: medical mistakes, impaired or otherwise dangerous phyiscians,over-treatment and over-reliance on unproven technologies.
Thew bottom line is this is an important book for anyone interested in finding out how healthcare could be better.
Issues discussed include: medical mistakes, impaired or otherwise dangerous phyiscians,over-treatment and over-reliance on unproven technologies.
Thew bottom line is this is an important book for anyone interested in finding out how healthcare could be better.
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