SATURDAY, MAY 12, 2018
Hello all,
At some point in all our lives, there’s a time where we develop a health scare. And last month, for me, that health scare was called Acute Renal Failure.
Basically, my kidneys were shutting down because I accumulated a toxic level of intravenous antibiotics I needed to use to treat a cellulitis infection on my lower left leg. That, and probably having taken some high-dose Motrin pills for the pain in my leg I had earlier from a lanced hematoma.
Let me back things up a bit. Earlier this year, what started as a small red area on my leg developed into a large red area that needed antibiotics to treat it. When two different antibiotics (Keflex and Bactrim) in pill form didn’t help, I needed to use antibiotics through I.V., which was Vancomycin administered for one hour 3 times a day. When the infection seemed to get worse, I had to be hospitalized for 2 nights from March 16 to March 18 for observation to try out using a combination of two different intravenous antibiotics and another in pill form, and then went home with another week’s worth of two I.V. antibiotics to treat the infection. It seemed to work, until the area got red again, this time with a hematoma. I thought the hematoma was an abscess, so at Urgent Care I had it drained, very painfully, but it was just blood that came out. Still, I was given Clindamycin to treat the area or at least prevent further infection, but though the wound was protected, the area was still red. So now I needed to start Vanco again on April 17, but with six I.V. line restarts in the 2 weeks of intravenous medication in March, I needed to have a PICC line inserted into my arm so that the medicine won’t be painful going in anymore. Every 2 days for 2 weeks in March I needed to go back to Urgent Care and change the I.V. line because it got painful/infiltrated.
The Vancomycin didn’t bother me at first back in March, and blood tests after 3 doses showed I was taking in the right amount of the medication into my system. But I couldn’t get the PICC line started until April 18th, and before I could use the PICC line I needed to get the Vancomycin in though an I.V. line that was in a painful place on my right hand… the one place I never wanted it, but it came in handy when I couldn’t t use the PICC line yet. I had to start my morning dose late on April 18, and because of that, the blood test from the Vancomycin trough couldn’t be done until the next morning. I’d be 5 doses in before the blood test. But after 3 doses I was already feeling pretty sick, and I didn’t understand why.
I started feeling nauseous all the time and lost all desire to eat or drink. My arms and legs felt like they would fall asleep if I stood still for a few seconds or if I hang my arms at the sides, and I had to shake my arms or legs to relieve the pain. I just generally felt miserable, cold and achy and just did not want to eat. The worst part was not drinking anything. When you take antibiotics, it’s important to drink liquids especially water to help flush out the excess medication out of your system. But I wasn’t even doing THAT. All I wanted to do was lie in bed and not put anything in my mouth, also for fear of throwing up whatever I ate or drank.
I went to get a blood test done April 19 for the Vancomycin trough (which was ordered by the doctor and is always a part of taking intravenous antibiotics), feeling sick that morning too. And to my horror about 3:30pm, I got a call from the Home Infusion pharmacy that my blood test came back showing highly elevated levels of Vancomycin and creatinine, meaning my kidneys started to get really affected by the medication. I got really scared. I was asked how fast I could get to Urgent Care, and was told that I needed I.V. fluids started to begin flushing my kidneys to get them working again. My mom took me to Urgent Care, where they started I.V. on me and wheeled me to the Emergency Center where I was put in an observation room temporarily until I’d be admitted to a regular room upstairs. Later I found out that my Vancomycin levels and creatinine levels were even higher because of the sixth dose I took soon after the Vancomycin trough blood test. I won't say what the levels were here, for fear of my sister finding out before she is ready to know them (and she'll let me know when she is). But the levels were... um, pretty bad.
I was visited by a nephrologist who determined that I needed dialysis to clean my blood of the Vancomycin. I’d get a temporary access catheter inserted into my jugular artery, and hearing about that got me even more scared about how serious this whole thing was. I was told I’d only need dialysis once or twice, and then “We’ll see.” I still couldn’t eat anything much at all and only held down sips of ice water and some clear soda. I was never without a green throw-up baggie, and often fought the urge to vomit just from thinking about the flavors and smells of food that I didn’t like. Dialysis wasn’t painful, but because my blood was a little cool going back into my body, I was shaking and shivering uncontrollably most of the time from the cold that not even warmed blankets could keep me warm for too long. I had dialysis for 3 hours on April 20, and for 4 hours on April 21, the second treatment to remove more Vanco and remove at least 2 liters of fluid that was accumulating in my body that I couldn’t pee out fast enough yet. After that, the doctors wanted to see if my kidneys would kick back in again and do what they’re supposed to do.
This is me at the hospital with the jugular catheter in my neck for the 2 dialysis treatments.
Around Monday April 22, I was only able to tolerate frozen fruit snacks like Italian ice, a strawberry flavored one and an lemon one. I couldn’t do jellos. I seemed to hold it down okay until the next day, I had hot tea after the Italian ice... then I lost that. Later because I only had sugar from the Italian ice, I got horrible stomach cramping that couldn’t be helped by going to the bathroom. It was a constant ebbing pain in my stomach that wouldn’t let up. It got so bad it triggered retching. I was given Tylenol for the pain, but when that didn’t help, I was recommended Norco. So I agreed to take it, and that might’ve been why I was able to fall asleep thru most of the night until 6am. But the pain came back several times the next day, and each time it seemed less bad. My hope was that the pain would not come a third day, and thankfully I was right. Tuesday the 24th, I was able to handle veggie broth. Days before, even the smell of any food, including broth, sent me into a retching heaving mess. But I needed to take in something besides sugary Italian ice, which might’ve caused a reaction in my stomach when nothing else was in there for several days. Veggie broth was okay for breakfast, a little beef broth for lunch... and I barely touched the dinner of cream of mushroom soup. But I think because I didn’t eat just sugary stuff, my stomach pain became less a problem. On the 25th, the first complete meal I had was tomato soup… oh my god, it was so delicious. Wow, I actually had something I thought was delicious. It made me believe that yes, I’d be able to eat again one day. But I was far from out of the woods. I wouldn’t be released from the hospital until I was actually eating again… eating actual food again... and I wasn’t sure how long before then that I’d go home.
By the evening on the 25th, I was upgraded to regular diet (low sodium though) and I tried my best to eat my dinner, although I could only stomach the bland chicken soup that came with it and the little bit of brown rice and quinoa. This time I was asked which choices I’d like for breakfast on April 26, and the cheese omelet was the best thing to go with. I only ate about half of that, but it was a good start, and I got to have some more tomato soup with lunch. One of the two internal medicine doctors that came to check on me daily came in and told me it’s possible with how well I was doing, that I may go home later that day. I’d been off the I.V. fluids for a couple of days or so, and I no longer needed the dialysis, and my levels were improving. By 1:45pm, I had the jugular catheter removed from my neck, and by 3:00pm, I had the PICC line removed from my arm, since I no longer had need for it. So by 5:30pm Thursday April 26, I was back home with my family. I’d miss all the amazing nurses at the hospital who took care of me there, but I was ready to come back home more than I realized.
And I already had an amazing nurse by my side through it all; my mom. She was with me though this process the whole way through… she helped feed me when I could barely eat or drink and helped me out of bed during the day, and even helped me pull the I.V. pole while I took walks with her down the hospital hall about 3 times a day. We nicknamed the I.V. pump "Beepy" because sometimes it beeped loudly about 5 - 10 minutes after being unplugged from the wall, and it couldn't hold a charge too well. (The hospital encouraged walking several times a day to prevent weakness form lying in the hospital bed all the time.) Walking was my favorite part of the day pretty much. But back to my point, Mom being with me was what probably made whole thing this easier to deal with, and the nurses appreciated her knowledge about my sickness because she is a retired nurse after 41 years in nursing. My dad and sister came by a couple of times, and Mom was wise to tell them about my dialysis after I’ve had it done the two times already so that they know I was okay, and so they wouldn't be surprised to see a tubing coming out of the side of my neck. It would've scared them and worried them for sure, but they were glad it was over and that the dialysis helped me significantly.
Among other things, probably one of the hardest parts of this experience was being separated from my twin sister for as long as 8 days. We never spent that long apart, EVER. I thought the 3 days in the hospital in March was long enough, but this was more than twice as long.
Right now, I’m just about feeling like my old self again. I’m eating almost normally, although now I have to dilute my juice sometimes, and I need to watch my salt a little for now. My whole body was swelling before from all the I.V. fluid, but it’s all gone down. And so has my weight... I not only lost all the 9+ pounds of fluid I retained form all the I.V. there, I also lost about 9 pounds of body weight too because I hadn't eaten in a few days. (Not the best, NOR the healthiest way to lose the weight, but maybe it will inspire me to keep it down.) Fortunately, I hardly feel nauseous anymore. And I can shower easily now that I sent have any access lines on me. And sleeping in my own bed is a beautiful thing. Plus, easy access to my bathroom. I'm getting back on my walking several days a week, which will be good for the swelling in my legs too. As for the infection on my leg, it's pretty much gone, but there is still a dark discoloration where it was, and now I wear medical compression stockings on both of my legs to keep the swelling down from edema, as well as to reduce the chance of any more infections.
I hate that this is making me push back a bunch of good music projects I’ve been working on, and it will take me a little longer to get them done, but I've been getting back on them. I still haven’t announced that exciting thing I wanted to announce, but that will have to wait next time.
Stay tuned, and stay healthy. ♥
(From the left, Deckerd and his human friend Yuuta)
The bubbly blisters not only showed up on my fingers… My palms were completely covered in them too, and eventually they converged into one long blister along my palm lines that made it especially difficult for me to bend my hands or close them. The thick skin from the top of my palms peeled off dramatically and left large areas of fresh new skin delicate and burning with anything that came into contact with it. I had cracking skin and fissures that stung horribly with little movement. Holding many objects were impossible. My sister, Dad, and Mom needed to do many things for me. Even my poor mom, who is battling cancer again, offered to spoon-feed me my favorite cereal when it got too painful for me to hold a spoon on one of her good days. I am so grateful I live with family who are here to help me when something as disheartening as this happens and makes me basically useless for a while.
I didn’t realize how much I depended on my hands until it hurt so much to use them. I was still decluttering my room/studio workspace and over-washing my hands in October. Then one stressful thing after another occurred mid-month, with a family illness and the intense worry about what could happen, and then came the worst flare-up of dyshidrotic eczema I’ve ever had this year. It went away on it’s own before, but this time it led to infection on BOTH hands. It hurt to move them, even a little bit! Antibiotics eventually helped the infections, but the eczema stayed, of course. I couldn’t hold a pen or spoon or anything without bad pain and itching and the feeling like my hands were on fire. The skin on all my fingers and half of both my palms completely peeled off. The whole thing flared up again in the middle of November even worse on brand new skin, just after it looked like my hands would finally be healing. It was a nightmare!
