Hospital Visit - 4/19 to 4/28
I tried to start a blog about my most recent "renal adventure" several times, but I've discovered several vital truths to the hospital experience. Something about the pasty walls covered in cheap hotel paintings, beeping machines, needles, blood pressure cups, "potty hats", consistent interruptions, numbness-inducing excuses for furniture, horrible food, lukewarm showers, crunchy linens, flat pillows, and those lights that never go off keeps any ounce of creativity from entering the brain. Every time I tried to sit down and write, I ended up with a listing of medical drivel that bored me to sleep. Or maybe that was because I never really slept, so I was in a catatonic state for about 9 days. The worst of it was an hour one afternoon that I spent cleaning out my hairbrush. I don't mean that I was watching TV and cleaning out my hairbrush. I was sitting in a chair, and slowly cleaning each bristle of my hairbrush. That was a stellar moment and a completely valid use of my time. Obviously.
So I guess I should explain a little about the "nuts and bolts" of how this came to be. About 5 weeks ago, I noticed a couple of small reddish bumps on my abdomen. At first, I dismissed them. They didn't hurt, and it's common to have skin changes when you're on high doses of prednisone and oral chemotherapy. Over the course of a few days, I noticed that the bumps started getting firmer and warmer. There was one in the middle of my stomach that began to get really big and firm. By Friday, April 15, it was quite painful, so I called my nephrologist in fear that it was an infection. He had told me to be very cautious about infections because I was so immunocomprimsed. He sent me to my dermatologist, who did two punch biopsies of the spots. Over the weekend, I nursed the stitches and noticed that the bumps were still hard and firm. Tuesday, I went to work and felt terrible. I was sitting at my desk first period and literally couldn't move. I had chills, so I started wondering if I had a temperature. I went to the nurse, who told me I had a low grade fever. I called my doctor, and he asked me to go to the ER immediately. I figured I'd get some antibiotics and be on my way.
Once I got there, they began to take a bunch of blood cultures and check for all kinds of infections. I was also told that I was extremely anemic, with a hemoglobin level of only 6. They gave me 4 units of blood and admitted me for IV antibiotic therapy. Over the next couple of days, I had chest X-rays, several chest CT scans, abdominal sonograms, and an echocardiogram. Thankfully, the tests showed that the infection had not spread to my heart or blood, and it confirmed that it was a staph infection of some kind. Because were weren't sure what KIND of staph I had, they treated me for MRSA. I was also taking Dapsone, a medication to prevent pneumonia. The CT scan showed a spot on my lung, however, so they treated me for pneumonia as well. I had to stop taking Dapsone since that was causing the severe anemia. I began taking Bactrim to prevent pneumonia instead, but that's produced an allergic reaction, so I have to stop that medication too. Because of the prednisone doses I'm on, a whopping 80 mg. a day still, they started monitoring my blood sugar. I have always had normal glucose levels, and I'm not diabetic, as their tests proved, but my blood sugar - on prednisone - was reading in the 300s! So, we began an insulin regimen. This was not going well....
I was hoping to be released on Friday the 22nd, but these lumps on my abdomen, which no one had really given much mind to at this point, were starting to get more painful and began to "ooze" a bit. I mentioned it to my infectious diseases doctor, who got a surgeon to come in and lance the absesses. That was, by far, the most vile part of the whole experience. I've never had anything "lanced" before, but the big "knot" that was in the center of my abdomen was infected. After the surgeon removed the dermatologist's stitches and cleaned "the pocket", there was about a 1 inch hole in my abdominal wall. Because of the infection, she couldn't suture it, so I learned to wet pack it with gauze to aide in its healing. The second absess was much smaller (yet MUCH more painful) and infected. Again, it was lanced and drained. As disgusting as that whole process was, getting all of that "gunk" out FINALLY started helping me feel better. It turns out that because of the prednisone, my skin is very, very thin. Tiny little abrasions, caused by things like friction from clothing or simple scratches, open me up to staph and other bacteria, which everyone carries on their skin all the time. My problem was that my chemotheraphy meds had wiped out my white blood cell count, so my body couldn't fight the infection. So instead of getting a little scratch, I got a big absess of pus and nastiness. The good news is that the results came back that I did NOT have MRSA... just plain staph. That allowed us to switch to a less toxic IV antibiotic that could be friendlier to my veins and kidneys.
A couple of days later, when things seemed to be turning up, I found out that I tested positive for CMV (cytomegalovirus). About 80% of the population carries this virus, but it really only affects people with compromised immune systems. However, it can be really dangerous for people like me, transplant patients, cancer patients, and AIDS/HIV patients, causing things like inflammation of the lung tissue and vision/hearing problems. Because of this, I can't see my father or mother for at least a month until I finish the round of CMV treatment and test negative for CMV. If I give this to my mom, she can't see my dad, and I DEFINITELY can't be around my dad right now. It's very sad for me, because he's finally starting to wake up and talk and make sense! I've heard his voice on the phone once, but otherwise, that's it. I get good updates from my mom, but it does pain me that I can't see her or him for a while. The most imporant thing is for us all to stay (and get) healthy, though, so I know this is just temporary.
Also, my WBC took a big dive south, dropping down to 1.8 (normal is 4-11), which is called neutropenia. So I had to enter isolation guidelines, with visitors "suiting up" in masks, robes, and gloves to enter my room. My doctors took me off chemo to give my body a chance to rebuild white blood cells. After all, we were expecting my body to fight a variety of infections (bacterial staph, viral CMV, and pneumonia) while continuing to decimate my immune system. We were stuck. Clearly, this chemo/steroid combination wasn't working.
In the meantime, my creatinine numbers were creeping up and up as my already REALLY weak kidneys were strugging to keep up with all the IVs and meds. Thankfully, the anemia seemed to be holding steady with the help of daily iron IVs (which sure do a number on your digestion, by the way), the blood transfusions, and some shots to help boost my counts.
All the meds were sending my body into a tizzy. My blood levels got really out of whack. As a renal patient, there are certain chemicals we look to keep in range - potassium, phosphorus, calcium, sodium, etc. All of mine started going wack-a-do with the meds, so that meant more supplements and meds. I don't even know what all I was taking. Both of my arms were completely black and blue from a variety of IVs and daily needle sticks and insulin shots. My hair started falling out by handfuls in the shower. I'd wake up from a fitful night of being hooked up to IVs to find my pillow blanketed in hair. I hadn't slept in days. My hips and legs were numb from the HORRIBLE bed. And I started getting little fevers from the Bactrim. I began to think I would never get to go home.
Finally, on Thursday the 28th, I had just about given up. I was sure they were going to let me sit and rot in room 3312 for another weekend. I was sad, depressed, lonely, and just downright angry. Finally, at about 5pm, the doctor came in and said that he planned to release me, as long as I promised to call if my fever went above 100. I readily agreed - soooo excited to just get home to my own bed. Finally, at 10 pm, I was released.
I have never felt such a sense of relief. I don't know quite how to describe it. I know that it wasn't quite prison, but those last few days sure felt like it. I have never been so happy to get into our car, and that night, curling up in my little "butt groove" on my side of the Tempurpedic mattress at home, I was in heaven. I didn't have any needles in my arms, no one came to wake me up to stick a needle in me or take my blood pressure or temperature. And I slept like a baby. I slept, and slept, and slept. I don't know that I've ever been so tired.
So when I come back and can rule the world, the whole "hospital" experience is one that I could definitely help to improve. First, get some more comfortable freaking beds!!! People need to SLEEP! And for the love of God, do we REALLY have to measure EVERY drop of urine produced? Truly? Also, sorry.... but most people like to have more than 2 options for meals, especially when it's a cycle and they are there for more than 1 week. I can only handle roast turkey or roast chicken with a mystery gravy, plastic green beans, and dry pasta for so many meals in a row before it gets old. And no... the "exciting" dessert of cookies with whipped cream (which - explain to me how that's fit for either a diabetic or renal diet?) doesn't make up for the fake eggs that you glopped on my plate. I lost 13 pounds in the hospital - mainly because the food was so vile. Maybe that's their plan! Starvation through disgust. Either way, I was so excited to come home Thursday night and make me some eggs from real actual chicken eggs, you know.... with shells. I've been enjoying real food like that for 7 days now, as well as some good nights' sleep and warm showers. Mike has become my incredible nurse maid. :) He lovingly repacks my wound each night after my shower with gauze (and not a single complaint!) and doctors me up. I sleep like a baby... uninterruped and peaceful.
I'm finally starting to feel more like myself. I'm still really weak from all the sitting around and hairbrush cleaning, but small chores around the house are helping. I was released without work clearance, so I've been at home all week recouperating, which has been good. I developed a case of oral thrush from all the antibiotics, but that's clearing up. I'll be on antibiotics for a month until everything officially clears, but I'm definitely on the mend.
Who knew that one quick trip to the ER would end up landing my rear end in the hospital for 9 full days? Craziness!!! Thank goodness I went, though. I had no idea how sick I had gotten! I've learned a lot from this whole experience, though. As my therapist told me on the phone, I am really good at ignoring my own pain. I have canceled any additional responsibilities I had - no more tutoring or Saturday school. Clearly, I wasn't taking good care of myself. I thought I was being careful, but I also knew I just didn't feel right. I just kept thinking I could push to summer. Nope. My body is done with that game. So now it's in charge, and I'm just trying to listen better.
So I guess I should explain a little about the "nuts and bolts" of how this came to be. About 5 weeks ago, I noticed a couple of small reddish bumps on my abdomen. At first, I dismissed them. They didn't hurt, and it's common to have skin changes when you're on high doses of prednisone and oral chemotherapy. Over the course of a few days, I noticed that the bumps started getting firmer and warmer. There was one in the middle of my stomach that began to get really big and firm. By Friday, April 15, it was quite painful, so I called my nephrologist in fear that it was an infection. He had told me to be very cautious about infections because I was so immunocomprimsed. He sent me to my dermatologist, who did two punch biopsies of the spots. Over the weekend, I nursed the stitches and noticed that the bumps were still hard and firm. Tuesday, I went to work and felt terrible. I was sitting at my desk first period and literally couldn't move. I had chills, so I started wondering if I had a temperature. I went to the nurse, who told me I had a low grade fever. I called my doctor, and he asked me to go to the ER immediately. I figured I'd get some antibiotics and be on my way.
Once I got there, they began to take a bunch of blood cultures and check for all kinds of infections. I was also told that I was extremely anemic, with a hemoglobin level of only 6. They gave me 4 units of blood and admitted me for IV antibiotic therapy. Over the next couple of days, I had chest X-rays, several chest CT scans, abdominal sonograms, and an echocardiogram. Thankfully, the tests showed that the infection had not spread to my heart or blood, and it confirmed that it was a staph infection of some kind. Because were weren't sure what KIND of staph I had, they treated me for MRSA. I was also taking Dapsone, a medication to prevent pneumonia. The CT scan showed a spot on my lung, however, so they treated me for pneumonia as well. I had to stop taking Dapsone since that was causing the severe anemia. I began taking Bactrim to prevent pneumonia instead, but that's produced an allergic reaction, so I have to stop that medication too. Because of the prednisone doses I'm on, a whopping 80 mg. a day still, they started monitoring my blood sugar. I have always had normal glucose levels, and I'm not diabetic, as their tests proved, but my blood sugar - on prednisone - was reading in the 300s! So, we began an insulin regimen. This was not going well....
I was hoping to be released on Friday the 22nd, but these lumps on my abdomen, which no one had really given much mind to at this point, were starting to get more painful and began to "ooze" a bit. I mentioned it to my infectious diseases doctor, who got a surgeon to come in and lance the absesses. That was, by far, the most vile part of the whole experience. I've never had anything "lanced" before, but the big "knot" that was in the center of my abdomen was infected. After the surgeon removed the dermatologist's stitches and cleaned "the pocket", there was about a 1 inch hole in my abdominal wall. Because of the infection, she couldn't suture it, so I learned to wet pack it with gauze to aide in its healing. The second absess was much smaller (yet MUCH more painful) and infected. Again, it was lanced and drained. As disgusting as that whole process was, getting all of that "gunk" out FINALLY started helping me feel better. It turns out that because of the prednisone, my skin is very, very thin. Tiny little abrasions, caused by things like friction from clothing or simple scratches, open me up to staph and other bacteria, which everyone carries on their skin all the time. My problem was that my chemotheraphy meds had wiped out my white blood cell count, so my body couldn't fight the infection. So instead of getting a little scratch, I got a big absess of pus and nastiness. The good news is that the results came back that I did NOT have MRSA... just plain staph. That allowed us to switch to a less toxic IV antibiotic that could be friendlier to my veins and kidneys.
A couple of days later, when things seemed to be turning up, I found out that I tested positive for CMV (cytomegalovirus). About 80% of the population carries this virus, but it really only affects people with compromised immune systems. However, it can be really dangerous for people like me, transplant patients, cancer patients, and AIDS/HIV patients, causing things like inflammation of the lung tissue and vision/hearing problems. Because of this, I can't see my father or mother for at least a month until I finish the round of CMV treatment and test negative for CMV. If I give this to my mom, she can't see my dad, and I DEFINITELY can't be around my dad right now. It's very sad for me, because he's finally starting to wake up and talk and make sense! I've heard his voice on the phone once, but otherwise, that's it. I get good updates from my mom, but it does pain me that I can't see her or him for a while. The most imporant thing is for us all to stay (and get) healthy, though, so I know this is just temporary.
Also, my WBC took a big dive south, dropping down to 1.8 (normal is 4-11), which is called neutropenia. So I had to enter isolation guidelines, with visitors "suiting up" in masks, robes, and gloves to enter my room. My doctors took me off chemo to give my body a chance to rebuild white blood cells. After all, we were expecting my body to fight a variety of infections (bacterial staph, viral CMV, and pneumonia) while continuing to decimate my immune system. We were stuck. Clearly, this chemo/steroid combination wasn't working.
In the meantime, my creatinine numbers were creeping up and up as my already REALLY weak kidneys were strugging to keep up with all the IVs and meds. Thankfully, the anemia seemed to be holding steady with the help of daily iron IVs (which sure do a number on your digestion, by the way), the blood transfusions, and some shots to help boost my counts.
All the meds were sending my body into a tizzy. My blood levels got really out of whack. As a renal patient, there are certain chemicals we look to keep in range - potassium, phosphorus, calcium, sodium, etc. All of mine started going wack-a-do with the meds, so that meant more supplements and meds. I don't even know what all I was taking. Both of my arms were completely black and blue from a variety of IVs and daily needle sticks and insulin shots. My hair started falling out by handfuls in the shower. I'd wake up from a fitful night of being hooked up to IVs to find my pillow blanketed in hair. I hadn't slept in days. My hips and legs were numb from the HORRIBLE bed. And I started getting little fevers from the Bactrim. I began to think I would never get to go home.
Finally, on Thursday the 28th, I had just about given up. I was sure they were going to let me sit and rot in room 3312 for another weekend. I was sad, depressed, lonely, and just downright angry. Finally, at about 5pm, the doctor came in and said that he planned to release me, as long as I promised to call if my fever went above 100. I readily agreed - soooo excited to just get home to my own bed. Finally, at 10 pm, I was released.
I have never felt such a sense of relief. I don't know quite how to describe it. I know that it wasn't quite prison, but those last few days sure felt like it. I have never been so happy to get into our car, and that night, curling up in my little "butt groove" on my side of the Tempurpedic mattress at home, I was in heaven. I didn't have any needles in my arms, no one came to wake me up to stick a needle in me or take my blood pressure or temperature. And I slept like a baby. I slept, and slept, and slept. I don't know that I've ever been so tired.
So when I come back and can rule the world, the whole "hospital" experience is one that I could definitely help to improve. First, get some more comfortable freaking beds!!! People need to SLEEP! And for the love of God, do we REALLY have to measure EVERY drop of urine produced? Truly? Also, sorry.... but most people like to have more than 2 options for meals, especially when it's a cycle and they are there for more than 1 week. I can only handle roast turkey or roast chicken with a mystery gravy, plastic green beans, and dry pasta for so many meals in a row before it gets old. And no... the "exciting" dessert of cookies with whipped cream (which - explain to me how that's fit for either a diabetic or renal diet?) doesn't make up for the fake eggs that you glopped on my plate. I lost 13 pounds in the hospital - mainly because the food was so vile. Maybe that's their plan! Starvation through disgust. Either way, I was so excited to come home Thursday night and make me some eggs from real actual chicken eggs, you know.... with shells. I've been enjoying real food like that for 7 days now, as well as some good nights' sleep and warm showers. Mike has become my incredible nurse maid. :) He lovingly repacks my wound each night after my shower with gauze (and not a single complaint!) and doctors me up. I sleep like a baby... uninterruped and peaceful.
I'm finally starting to feel more like myself. I'm still really weak from all the sitting around and hairbrush cleaning, but small chores around the house are helping. I was released without work clearance, so I've been at home all week recouperating, which has been good. I developed a case of oral thrush from all the antibiotics, but that's clearing up. I'll be on antibiotics for a month until everything officially clears, but I'm definitely on the mend.
Who knew that one quick trip to the ER would end up landing my rear end in the hospital for 9 full days? Craziness!!! Thank goodness I went, though. I had no idea how sick I had gotten! I've learned a lot from this whole experience, though. As my therapist told me on the phone, I am really good at ignoring my own pain. I have canceled any additional responsibilities I had - no more tutoring or Saturday school. Clearly, I wasn't taking good care of myself. I thought I was being careful, but I also knew I just didn't feel right. I just kept thinking I could push to summer. Nope. My body is done with that game. So now it's in charge, and I'm just trying to listen better.
Jennifer... Holy freaking cow... Your body went through a lifetime of sickness in nine days! This post is overwhelming just to read much less experience, so I'll skip the platitudes and just say it again... Holy freaking cow! Very glad to hear you're on the mend and home in your own bed away from being stuck and woken up all night. Hopefully some real healing can begin. So, so sorry you can't see your dad right now. That just seems unfair on top of everything else you're dealing with. Thinking of you!
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