It all started on Thursday. I played ultimate frisbee at lunch. It had been raining all day, but we had a great window to go play. So, I went out and played on the wet field and had a great time. By the time I got home though, I noticed that my legs were starting to become really uncomfortable, and I really wanted to take a bath. I don’t know if this was the start of some hives, or completely unrelated to the rest of the experience. But, then I was pretty restless and feeling bad the rest of the night to the extent I wasn’t able to get much sleep Thursday night and unable to work Friday. After resting during the day, I was feeling pretty good when it came time for dialysis. I went in to dialysis, and I was running a small temperature and the cathether site was kind of red. They drew blood cultures, and after talking with the Dr on call decided to give me a dose of vancomycin.
I had had vancomycin three times before this. The first time was when the original infection was discovered and we went into the emergency room. I got really itchy feeling during the treatment, but it seemed tolerable then and that was a common reaction to vancomycin. So, we decided to just watch it closely on the next treatment, and give me some benadryl if it was looking like I was getting these symptoms. The second time, I just got some minor restlessness, but it seemed like a good treatment and I was tolerating it. Pretty much same with the third treatment.
So, this fourth treatment, I was expecting a little restlessness and it did happen while I was being infused. I think it was more restlessness than the previous 2 times. My blood pressure was then really low when I got off of the machine and I was a little light headed. After resting for about 10 minutes, things were a little more normal and I went home, although I wasn’t feeling well. I also promised to watch the fever closely. Home usually makes me feel a lot better – but this time I just started feeling worse and worse. My stomach started hurting, and the fever had gone up to about 100. I couldn’t sleep, so stayed up on the couch watching movies. I eventually dozed off, and woke up at about 3 AM. I checked my temp, and it was 103. I woke up Lisa, and we rushed into the emergency room. I felt horrible now – fever, hands and feet had gone numb, and the stomach pain. I figured maybe I had appendicitis or something like that that might need immediate surgery. When I got to the hospital, my temperature was down a couple of degrees. But, the on-call doctor immediately suspected catheter infection, and they drew more blood cultures and decided I needed to stay in the hospital a couple of days. Someone then showed up to take me to dialysis? Lisa looked at him and said “He just had dialysis last night”, and the guy walked away. Then, the nurse came in and explained that the plan was for me to get dialysis again on Saturday morning, and then the temporary cathether would be removed, then, more vancomycin, and if it is looking like the cultures are coming up negative we’ll send you home and you can get a new catheter Wednesday before dialysis. This was horrible news to me – I hate the hospital, but seemed like a good, conservative approach. So, dialysis went well and I was able to relax and get some sleep, and my fever was looking much better. The dialysis nurse also removed the temporary catheter at this time. So, I got up to the room, and got started on the vancomycin drip. This time – I felt even worse than before. I just couldn’t sit still, and my hands and feet went just incredibly numb. We begged the nurse to stop so that I could just walk around the ward a few times and maybe get rid of some of the restlessness. They thought maybe it was the benadryl they had given me before the treatment that was making me so restless, and agreed. So, Lisa and I took a few laps around the ward and things seemed to be feeling better. We started up the drip again – and this time it was even worse than before. Instead of numbness in my hands and feet, it was just intense pain – like 7 or 8 out of 10. We quickly got the nurse and begged her to stop. The Doctor just couldn’t understand the symptoms, but the nurse saw just how bad it was and took me off and said they’ll figure out something else. We tried the walking loops around the ward this time. It helped a little, I went from pain just back to numbness and uncomfortableness, but not back to normal. I don’t think anything else really happened on Saturday – but it was a bad day.
Sunday, I was still feeling pretty awful with the fever, stomach discomfort, and numbness. Also, at some point along this timeframe, hives/fever blisters had developed on my legs. We think Friday night at the peak of the fever, but it could have been as early as Thursday after ultimate. I got an ultrasound this morning to look for pancreatitis or anything else in my stomach area that would explain the stomach discomfort. Everything looked normal on the ultrasound, so that was a relief. I had already started to suspect this, but the stomach discomfort was solvable with a laxative. Things were just way out of whack due to everything else going on. We got back up to the room, and appreciated visits from my parents and Lisa’s sister Lori and husband Jon. That night, I got a different antibiotic infused that I tolerated much better – but the working theory was still a catheter infection.
Monday, the stomach was feeling better, and I was probably a little less numb. We also got some of the blood culture results back. Everything was negative – except the tip of the catheter which did grow something. There are a couple of theories about this – either contamination or that it still supports the catheter infection theory. Lisa’s parents came and visited us and this was much appreciated, as also did my friend Dave from work. They were quite worried I think after hearing how awful I must have looked on Sunday when the digestion problem was still worked in with everything else. We were hopeful I would be able to go home from the original timeframe we were speculated in the emergency room. But, I still had fever, so it didn’t work out. I did get the antibiotic again right before bed.
Tuesday was about like Monday – we were hopeful of going home, but I still had enough of a fever and we hadn’t learned anything conclusive enough that everyone concurred the best approach was to keep me one more day, get the catheter inserted, test it out in dialysis, and then I could go. They also wanted to get involved the infectious disease group and get their opinion on the antibiotic treatment and diagnosis. Lisa and I were also getting set up for the daily antibiotic infusions at home for a couple of weeks – not fun, but we were prepared to do this.
Wednesday, the catheter placement went well. Temporary cathethers aren’t bad at all – or I am just getting way too used to it. We then saw the infectious disease doctor. I think he concurred with the need to continue on the antibiotics and insure we kill any infection. He didn’t have a good explanation for the numbness either, but they were all pretty certain by now that I was allergic to some extent to vancomycin and shouldn’t be given it again unless it was just the last case scenario. He mentioned and ordered some blood tests thinking there might have been some type of virus involved here too, but that since my fever had now broken, and the hives seemed to be healing, that everything should be good for releasing me today still. He also had a better recommendation for an antibiotic, and this was one that could be given at dialysis only and not needed daily, so that was great. Dialysis went well, and after some frustrating “hospital time” waits for the final blood draw, I was released.
This hospital stay was just brutal to me. I feel so beat up by it – and got to some quite low points feeling sorry for myself. Always though, I knew that I could go to Jesus in prayer, and that He had suffered far worse than this for me, and that all I was going through was temporary. That always brought me the peace I needed to continue, and I am so thankful.
Lisa and I are both feeling pretty tired and beat up today. Please continue to pray for us – specifically for healing, and that I don’t have side effects from the new antibiotic and it is effective in clearing all this up. Please pray that we can get through this and get to the next modality – peritoneal dialysis – if that is God’s will for me. Praise be to God for carrying us through the past few days.
2 little blessings from this – first we prayed a lot. I really had to turn to God – everywhere I was in the hospital which is something I should do anyway. But, just down the hall from my room was the neatest little prayer chapel – so that was a good place to pray. Second – I got to shower quite a few times in the few days I didn’t have a catheter. I love showers, and with stitches from catheters along with the high contamination risk if you get them wet, it has been a long couple of months of sink shampoos and sponge baths.
My prayers go out to all of the people in Myanmar and China with the recent disasters. May the people who don’t know our Lord find Him somehow in the relief efforts.
I still don’t know for sure it is related, but I have decided to retire from ultimate frisbee games when I have a catheter in. If you saw the fields we play on – it is just too big of a risk for infection I think.
Kevin