So, I finally made it to a room at 5 AM on April 4. I thought I would get to sleep at that point. Not so much. The transport folks transferred me to the bed and then the nurse and tech started doing things to me. First the nurse moved my offending IV to a better position. Then she and the tech put a mattress pad under me the purpose of which I could never figure out. The nurse started doing the typical intake things. She checked my skin, did a social history questionnaire and the other stuff that needs to be done when you're brought to the floor. They also finally stopped the TPN I had come in on. I didn't much care what they did to me as long as they helped me get warm. The good news was my fever was breaking. The bad news was I was having severe shaking chills as a result. I don't think I've ever had chills that bad. My teeth were chattering,my muscles were all tensed to the point that I couldn't move. They piled blankets on me and after a painful two hours, they subsided.
At this point it was nearly 7 AM. Shift change and morning rounds began. Big Academic Medical Center is a teaching hospital That means rounds are a staggered affair. First. you see a medical student, then the intern, then an attending. The med student was the one who did a lot of the work for me. He told me that my heart rate had come down with rehydration but was still high. He seemed encouraged that my fever had broken. He said they'd just observe me until the blood cultures came back. On physical exam we discovered that I had some tenderness over my kidneys. This led him to think that I might have what he called an asymptomatic bladder infection and not a line infection. I know I didn't go to medical school, but wouldn't the fact I had had a fever mean that whatever was going on was symptomatic? Anyway, he finished his exam and left just as the new tech came in to do the first check of my vitals for the day. Any illusions I had had about this being anything other than a line infection were shattered at that point.
My fever was back and my heart rate was back in the 130s. Awesome. Soon, the resident was at my bedside looking perplexed. There wasn't a whole lot he could do until the cultures came back. I settled in to wait for those. In the meantime, I continued to receive broad-spectrum IV antibiotics and fluids since I was no longer getting TPN.\ The reason I continued to get antibiotics is because central line infections can turn deadly quickly. They always err on the side of caution.
Per the GI consulting on behalf of my GI, I could get only IV saline and dextrose for up to a week and be fine. I believed him that time. After taking weeks to be anywhere near human again, I'm regretting following that advice so blindly. The thing is, TPN can't be run through a regular IV. There is a version of it called Peripheral Parenteral Nutrition that can be run through a normal IV. If, heaven forbid, this happens again, I will insist on beginning PPN as soon as I lose my PICC.
Around 1 that afternoon, the medical student came in and said that the cultures had grown staph bacteria. This organism grew on the plastic of my PICC line, even with strong antibiotics on board. The line needed to be removed before we could hope to clear the infection. A few minutes later the resident walked the med student through removing my line and snipping the tip so it could be cultured. I can't remember now whether they cultured the end that had been near my heart, or the outside end. The good news was I was already on the right antibiotics to treat staph. The bad news was that I would be stuck n the hospital until at least Monday. I would need a new PICC as soon as my blood cultures had been negative for two days. The earliest that would happen was Sunday. The thing was the people who placed PICCs weren't in the hospital during the weekends. So Monday it would be.
The rest of Thursday and most of Friday passed rather uneventfully. I had an EKG late on Thursday. I also had orthostatic vitals taken at some point to check my hydration status. I checked out fine.
Late Friday afternoon, I had an echocardiogram to make sure my heart wasn't infected. This is a very real risk of central line infection given the line's proximity to the heart. I am convinced that test irritated the pocket where my stimulator lives. Since that day I have had significant pain in that area. I had Dr. B. check it out before I left since I was on his turf and he said it was fine.
Saturday's labs showed my potassium was low, so Saturday night was spent in tears as I experienced the internal fire that was IV potassium. Sunday was a low-key day. Monday, I had my line replaced and thought I was going home. Turns out my nursing agency had declined to take me back after I was discharged but neglected to say so until a few hours before I was due to leave. So I didn't get homthate until very late Tuesday night.
Since then, it's been a long slow recovery. I lost enough weight that I noticed. We tweaked my TPN formulation pretty substantially this week to help me regain that weight. I am still more easily fatigued than before.
As awful as this experience has been it gave some much needed perspective. Before this, I thought the worst thing that could happen was losing my job. Now I see there are worse things.
Showing posts with label PICC line. Show all posts
Showing posts with label PICC line. Show all posts
Thursday, April 18, 2013
Sunday, April 14, 2013
It All Fell Apart Part One: Lost Jobs and Long Nights in the ER
It's been awhile. Sorry about that. Life is exceptionally sucky right now.
Remember how I said work was really important to me? Well, I lost that job. A combination of the sequester and my needing to be homebound to get help with TPN led to my being let go. That happened at the end of March.
I spent the last week and a half of March job searching, filing for unemployment, and figuring out how to get my Social Security reinstated. I struggled emotionally to understand how I could be in the position of having to find a job again. It was hard enough interviewing when all I had to contend with were people's attitudes toward my using a chair. Now, I am going to present a whole new set of challenges at some point in the process thanks to GP. Talk about stressful. So things were in major flux.
Then April 3 happened.
I had felt exceptionally tired all day. I didn't think much of it since I'm often really tired. I also had some body pain that was new but I figured was explained by a lowish potassium found on my weekly labs drawn just two days before. As five o'clock neared, I actually took a nap at my desk waiting for my nurse to come. Weird. When the nurse came she unhooked me and I took a shower. I noticed I was weaker and had a harder time transfering than I do normally. Again I chalked it up to being tired. I got dressed while she got my next bag out and ready. She hooked me up, started the pump and started taking my vital signs. She told me my blood pressure wasn't low, but it was very "loud." My pulseox was fine, but my pulse was 135 reading from the pulse oximeter Wow. That machine is finicky sometimes, so she checked it manually and still got 110. High, but I had just been moving around and getting dressed. Then, she took my temperature. She asked me if I felt sick. No, why? My temp was over 100. Because I have a central line, a fever is a huge red flag for infection.
I had my nurse call the on-call GI covering for my motility specialist. She wanted to call my primary doctor. I knew it'd be best to let my GI handle it since I have the PICC for TPN. While we waited for the on-call to call back, I put shoes on and began gathering my supplies to sustain me through an admission if it came to that. The on-call called back and after hearing my vitals said I needed to go to the ER. I got my stuff together and headed out to the metro.
About 45 minutes later, I made it to Big Academic Medical Center. I headed to the ER and checked in. Every time someone took my pulse, they had to check two to three times to be sure it was right The first time I saw what it was, I wasn't all that surprised. It was reading 145, but I was feeling every one of those beats. I was brought back to an exam room fairly quickly.
When they hooked up the monitor, my heart rate ran between 150-160 beats per minute and my temp was hovering around 100. I was sitting still, not running a marathon as my heart rate seemed to indicate.The doc ordered a chest film and blood cultures. The x-ray to rule other sources of infection like pneumonia and the cultures were to check for an infection of my PICC line or in my bloodstream. They drew blood from my line and collected it in a jar that would be allowed to grow after being exposed to air. They drew blood from my other arm as well and collected that sample in a jar that would grow without the help of air. They also wanted a urine sample they could culture to rule out a bladder infection. Thanks to the fever and despite having TPN running, it took nearly three liters of fluid for me to deliver that.
My brother had met me in the ER and was a huge help. He distracted me and turned off my heart monitor every five minutes when it alarmed because my heart rate was so high. The rate began to come down as I was better hydrated, but stayed above 100 for the next two days. My fever trended down too, but was still high enough to be a concern.
Around 10:30, I was seen by the ER Attending. He asked some questions from behind a computer monitor. He decided I should be admitted in light of my fever and tachycardia. I called my dad to let him know I was staying, texted my mom, and then waited to go upstairs. My brother hung in there until midnight, but had to leave at that point. I hung out in my chair for another couple of hours but was transferred to the gurney at 1:30. I busied myself by eavesdropping on the goings-on in the ER. The stories I heard ranged from a woman seeking drug rehab, to a barely-drunk but very angry 19-year old college kid who was apparently there against his will thanks to a contract between the hospital and the university on whose campus the hospital lives.
Around 2 AM an internal medicine doc came down and saw me. She said she wanted them to stop my TPN in case that was a source of the infection. Apparently fungus likes to grow in TPN. Who knew? She said I would be given a peripheral IV in my right arm so that they could stop using my PICC.
The ER nurse had started me on two broad-spectrum antibiotics, Zosyn and Vancomycin which I was on for the duration of the admission at twice daily dosing. She also started an IV in my right hand that ranks near the top of my Most Brutal IV Experiences list. She found a good vein quickly. When that vein rolled, as my tiny red-head veins are wont to do, she FOLLOWED it. This fishing expedition meant an extremely awkward and painful placement into the boniest part of my hand. The bruise that line left is only now starting to fade.
Around 5 AM after nearly 9 hours in the ER, I was finally brought up to the fifth floor where I would spend the next six days.
Stay tuned to find out what grew!
Remember how I said work was really important to me? Well, I lost that job. A combination of the sequester and my needing to be homebound to get help with TPN led to my being let go. That happened at the end of March.
I spent the last week and a half of March job searching, filing for unemployment, and figuring out how to get my Social Security reinstated. I struggled emotionally to understand how I could be in the position of having to find a job again. It was hard enough interviewing when all I had to contend with were people's attitudes toward my using a chair. Now, I am going to present a whole new set of challenges at some point in the process thanks to GP. Talk about stressful. So things were in major flux.
Then April 3 happened.
I had felt exceptionally tired all day. I didn't think much of it since I'm often really tired. I also had some body pain that was new but I figured was explained by a lowish potassium found on my weekly labs drawn just two days before. As five o'clock neared, I actually took a nap at my desk waiting for my nurse to come. Weird. When the nurse came she unhooked me and I took a shower. I noticed I was weaker and had a harder time transfering than I do normally. Again I chalked it up to being tired. I got dressed while she got my next bag out and ready. She hooked me up, started the pump and started taking my vital signs. She told me my blood pressure wasn't low, but it was very "loud." My pulseox was fine, but my pulse was 135 reading from the pulse oximeter Wow. That machine is finicky sometimes, so she checked it manually and still got 110. High, but I had just been moving around and getting dressed. Then, she took my temperature. She asked me if I felt sick. No, why? My temp was over 100. Because I have a central line, a fever is a huge red flag for infection.
I had my nurse call the on-call GI covering for my motility specialist. She wanted to call my primary doctor. I knew it'd be best to let my GI handle it since I have the PICC for TPN. While we waited for the on-call to call back, I put shoes on and began gathering my supplies to sustain me through an admission if it came to that. The on-call called back and after hearing my vitals said I needed to go to the ER. I got my stuff together and headed out to the metro.
About 45 minutes later, I made it to Big Academic Medical Center. I headed to the ER and checked in. Every time someone took my pulse, they had to check two to three times to be sure it was right The first time I saw what it was, I wasn't all that surprised. It was reading 145, but I was feeling every one of those beats. I was brought back to an exam room fairly quickly.
When they hooked up the monitor, my heart rate ran between 150-160 beats per minute and my temp was hovering around 100. I was sitting still, not running a marathon as my heart rate seemed to indicate.The doc ordered a chest film and blood cultures. The x-ray to rule other sources of infection like pneumonia and the cultures were to check for an infection of my PICC line or in my bloodstream. They drew blood from my line and collected it in a jar that would be allowed to grow after being exposed to air. They drew blood from my other arm as well and collected that sample in a jar that would grow without the help of air. They also wanted a urine sample they could culture to rule out a bladder infection. Thanks to the fever and despite having TPN running, it took nearly three liters of fluid for me to deliver that.
My brother had met me in the ER and was a huge help. He distracted me and turned off my heart monitor every five minutes when it alarmed because my heart rate was so high. The rate began to come down as I was better hydrated, but stayed above 100 for the next two days. My fever trended down too, but was still high enough to be a concern.
Around 10:30, I was seen by the ER Attending. He asked some questions from behind a computer monitor. He decided I should be admitted in light of my fever and tachycardia. I called my dad to let him know I was staying, texted my mom, and then waited to go upstairs. My brother hung in there until midnight, but had to leave at that point. I hung out in my chair for another couple of hours but was transferred to the gurney at 1:30. I busied myself by eavesdropping on the goings-on in the ER. The stories I heard ranged from a woman seeking drug rehab, to a barely-drunk but very angry 19-year old college kid who was apparently there against his will thanks to a contract between the hospital and the university on whose campus the hospital lives.
Around 2 AM an internal medicine doc came down and saw me. She said she wanted them to stop my TPN in case that was a source of the infection. Apparently fungus likes to grow in TPN. Who knew? She said I would be given a peripheral IV in my right arm so that they could stop using my PICC.
The ER nurse had started me on two broad-spectrum antibiotics, Zosyn and Vancomycin which I was on for the duration of the admission at twice daily dosing. She also started an IV in my right hand that ranks near the top of my Most Brutal IV Experiences list. She found a good vein quickly. When that vein rolled, as my tiny red-head veins are wont to do, she FOLLOWED it. This fishing expedition meant an extremely awkward and painful placement into the boniest part of my hand. The bruise that line left is only now starting to fade.
Around 5 AM after nearly 9 hours in the ER, I was finally brought up to the fifth floor where I would spend the next six days.
Stay tuned to find out what grew!
Sunday, February 3, 2013
29 Things About GP
29 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Gastroparesis and moderate probable Colonic Inertia
2. I was diagnosed in November 2011 just having turned 26.
3. But I had symptoms since:July 2011 thank God for good doctors
4. The biggest adjustment I’ve had to make is :Finding ways to be social without food. Food is everywhere!.
5. Most people assume that I miss food. Not so. I have not been truly hungry in 18 months..
6. The hardest part about mornings are: The nausea. It overwhelms me and it takes a lot of energy to push past it and get out of bed.
7. My favorite medical TV show is: It was ER. Then House. If anybody knows of a real life House please let me know! I liked Grey's Anatomy a lot more in the early years than I do now, still watch that too though
8. A gadget I couldn’t live without is: My Ipod. Music is my happy place. Always has been, but has become critical to maintaining my sanity since getting sick. After that, my laptop or tablet are great for staying in touch with family and friends who are spread out all over the place.
9. The hardest part about nights is Right now, it's being hooked up to my TPN. I'm on it 12 hours a day now. Either 5P-5A on weekdays, or 7P-7A on weekends. I have to get up at least twice to pee. It's about to get more annoying since I'm chronically clinically dehydrated and am finally going to let them add more sterile water to my bags. The dietitian will be happy since she's been suggesting it the last couple of weeks.
10. Each day I take Nine pills, two inhalers and a nasal spray. With the arrival of my PICC I now get IV zofran twice a day. I'm on a long course of steriods right now too so they're in the mix.
11. Regarding alternative treatments Fine by me.
12. If I had to choose between an invisible illness or visible I would choose:Since I already used a chair before GP joined the party, I don't get a choice. I have found myself wishing that I didn't have CP a lot lately. Generally it is easier to live with CP, if only because the chair does a lot of the explaining for me. I am still really bad at making why I don't/can't eat make sense to people.
13. Regarding working and career: My work is extremely important to me. It's become a great distraction as my health has gotten shakier. My coworkers are a great support. I will do everything in my power to continue working.
14. People would be surprised to know: That I have seriously considered medical school several times. If I was working with a full compliment of body parts, I totally would've gone. I think my life has taught me so much that would benefit other people. I really like the puzzle-solving aspect of medicine too.
15. The hardest thing to accept about my new reality has been: The unpredictability. I just get used to a progression, the idea of needing the next more invasive surgery or intervention and it all changes again. I think of TPN as the last resort so some of the living on shifting sand feeling has gotten better. The next thing is death, and I'll be damned if I'll let that happen!
16. Something I never thought I could do with my illness that I did was: I have made some great new friends through the online support group. Even though we will likely never meet in real life, that group has become like family to me. I hate having GP, but without it, I would never have met some truly incredible people.
17. The commercials about my illness: Don't exist Even though GP is *not* a rare disease, there is very little awareness about it. The lack of awareness is particularly evident and problematic in the medical community. Case in point, the last time I saw my primary doctor, she asked why we were considering nutrition support. In her eyes I looked great!
18. Something I really miss doing since I was diagnosed is: Taking advantage of the great things my city has to offer. Before GP, I was always going somewhere or doing something on weekends. Now even managing to shower every day is a stretch
19. It was really hard to have to give up My conception of health. I always considered myself a healthy person. I had a disability, yes, but that didn't make me sick. Now I am very sick and have a disability.
20. A new hobby I have taken up since my diagnosis is: Blogging. It is very therapeutic for me to come here and express myself in a much more articulate way than I could manage when I speak.
21. If I could have one day of feeling normal again I would: Eat at my favorite restaurant in the city. Then I'd go spend the day with friends at the museums or at the movies. Then I'd eat at another restaurant Then come home and eat some more!
22. My illness has taught me: Never to take anything for granted. Eighteen months ago, I had no idea how radically life would change for me. I should've appreciated my life before a whole lot more than I did.
23. Want to know a secret? One thing people say that gets under my skin is: "But you look good!" Thanks, I know I needed to lose weight before but those three words are a surefire way to make me feel like you aren't paying attention to *how* I've lost the weight.
24. But I love it when people: Ask thoughtful questions or listen without judgment. Sometimes I just need a listener.
25. My favorite motto, scripture, quote that gets me through tough times is:I do hard things. This is something my mom often told me when I struggled to find a job. Every day I say it to myself. Yes, this is hard, maybe the hardest thing I've ever done. I can do it though because I do hard things.
26. When someone is diagnosed I’d like to tell them: Educate yourself. Find the best doctors you can. Speak up. Take a deep breath. The worst may happen for you but it will be OK.
27. Something that has surprised me about living with an illness is: the loss of control. I now feel like my body isn't mine. I'm just a visitor.
28. The nicest thing someone did for me when I wasn’t feeling well was: Call and tell me a story. Ask me for advice. When I'm miserable, I feel like it's the best gift ever to be reminded that I'm valued and important.
29. The fact that you read this list makes me feel: loved and understood.
1. The illness I live with is: Gastroparesis and moderate probable Colonic Inertia
2. I was diagnosed in November 2011 just having turned 26.
3. But I had symptoms since:July 2011 thank God for good doctors
4. The biggest adjustment I’ve had to make is :Finding ways to be social without food. Food is everywhere!.
5. Most people assume that I miss food. Not so. I have not been truly hungry in 18 months..
6. The hardest part about mornings are: The nausea. It overwhelms me and it takes a lot of energy to push past it and get out of bed.
7. My favorite medical TV show is: It was ER. Then House. If anybody knows of a real life House please let me know! I liked Grey's Anatomy a lot more in the early years than I do now, still watch that too though
8. A gadget I couldn’t live without is: My Ipod. Music is my happy place. Always has been, but has become critical to maintaining my sanity since getting sick. After that, my laptop or tablet are great for staying in touch with family and friends who are spread out all over the place.
9. The hardest part about nights is Right now, it's being hooked up to my TPN. I'm on it 12 hours a day now. Either 5P-5A on weekdays, or 7P-7A on weekends. I have to get up at least twice to pee. It's about to get more annoying since I'm chronically clinically dehydrated and am finally going to let them add more sterile water to my bags. The dietitian will be happy since she's been suggesting it the last couple of weeks.
10. Each day I take Nine pills, two inhalers and a nasal spray. With the arrival of my PICC I now get IV zofran twice a day. I'm on a long course of steriods right now too so they're in the mix.
11. Regarding alternative treatments Fine by me.
12. If I had to choose between an invisible illness or visible I would choose:Since I already used a chair before GP joined the party, I don't get a choice. I have found myself wishing that I didn't have CP a lot lately. Generally it is easier to live with CP, if only because the chair does a lot of the explaining for me. I am still really bad at making why I don't/can't eat make sense to people.
13. Regarding working and career: My work is extremely important to me. It's become a great distraction as my health has gotten shakier. My coworkers are a great support. I will do everything in my power to continue working.
14. People would be surprised to know: That I have seriously considered medical school several times. If I was working with a full compliment of body parts, I totally would've gone. I think my life has taught me so much that would benefit other people. I really like the puzzle-solving aspect of medicine too.
15. The hardest thing to accept about my new reality has been: The unpredictability. I just get used to a progression, the idea of needing the next more invasive surgery or intervention and it all changes again. I think of TPN as the last resort so some of the living on shifting sand feeling has gotten better. The next thing is death, and I'll be damned if I'll let that happen!
16. Something I never thought I could do with my illness that I did was: I have made some great new friends through the online support group. Even though we will likely never meet in real life, that group has become like family to me. I hate having GP, but without it, I would never have met some truly incredible people.
17. The commercials about my illness: Don't exist Even though GP is *not* a rare disease, there is very little awareness about it. The lack of awareness is particularly evident and problematic in the medical community. Case in point, the last time I saw my primary doctor, she asked why we were considering nutrition support. In her eyes I looked great!
18. Something I really miss doing since I was diagnosed is: Taking advantage of the great things my city has to offer. Before GP, I was always going somewhere or doing something on weekends. Now even managing to shower every day is a stretch
19. It was really hard to have to give up My conception of health. I always considered myself a healthy person. I had a disability, yes, but that didn't make me sick. Now I am very sick and have a disability.
20. A new hobby I have taken up since my diagnosis is: Blogging. It is very therapeutic for me to come here and express myself in a much more articulate way than I could manage when I speak.
21. If I could have one day of feeling normal again I would: Eat at my favorite restaurant in the city. Then I'd go spend the day with friends at the museums or at the movies. Then I'd eat at another restaurant Then come home and eat some more!
22. My illness has taught me: Never to take anything for granted. Eighteen months ago, I had no idea how radically life would change for me. I should've appreciated my life before a whole lot more than I did.
23. Want to know a secret? One thing people say that gets under my skin is: "But you look good!" Thanks, I know I needed to lose weight before but those three words are a surefire way to make me feel like you aren't paying attention to *how* I've lost the weight.
24. But I love it when people: Ask thoughtful questions or listen without judgment. Sometimes I just need a listener.
25. My favorite motto, scripture, quote that gets me through tough times is:I do hard things. This is something my mom often told me when I struggled to find a job. Every day I say it to myself. Yes, this is hard, maybe the hardest thing I've ever done. I can do it though because I do hard things.
26. When someone is diagnosed I’d like to tell them: Educate yourself. Find the best doctors you can. Speak up. Take a deep breath. The worst may happen for you but it will be OK.
27. Something that has surprised me about living with an illness is: the loss of control. I now feel like my body isn't mine. I'm just a visitor.
28. The nicest thing someone did for me when I wasn’t feeling well was: Call and tell me a story. Ask me for advice. When I'm miserable, I feel like it's the best gift ever to be reminded that I'm valued and important.
29. The fact that you read this list makes me feel: loved and understood.
Wednesday, January 16, 2013
The Thrill of Accomplishment
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.
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.
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.
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