I'm writing this because now I can laugh at it. I am not writing for sympathy but just to share how we all have trials and roadblocks, but we can get through them.
My fun began early in the month. I was put on Xphozah two months ago. It is the newest phosphorous blocker, not a binder. My phosphorous was climbing and nothing was working so I got this miracle drug. Well, it should be called "explosha". Because it works like a stool softener and a super laxative. I did not realize I was becoming dehydrated. And because of that, I got a UTI. So of course, the result was an anitbiotic.....which also causes diarrhea very badly. I was so sick and not really understanding how dangerously dehydrated I was. I drink a lot of water through the course of the day, but I might as well just have taken it and thrown it in the toilet.
My machine was giving up weird alarms and there was no cause for them. I went to make a sack and for the first time ever, it failed. But somehow, I got to accept it. Then the next time, nope, there was no saving it. Nxstage put me through all the fixes and nothing worked. 3 hours of draining at 9pm. Next day, started over with a different batch number, same thing. Nothing would fix it. Nxstage said the Control Unit was shot and with the alarms, it made sense. Unfortunately, this was Friday night after 5:30. I had no idea what to do since I was overdue for a treatment. They said they would send it to me overnight. Not realizing that their idea of overnight was Tuesday. Swell.
Meanwhile, I had to have a treatment. My husband and I have never hung bags and have no clue anymore how to do it. We were trained over a year and months ago and the bags have changed. So I went to the clinic. At this point, I could only hold my urine for about an hour. I was not sleeping because of the this. I was drinking cranberry juice and water to flush the UTI out. Meanwhile, the diarrhea was still present even though I was only taking one Explosha a day. The antibiotic was enough. I was in a panic because what was I going to do on treatment? Answer was to wear a diaper. I wore two. Nothing says dignity like a double diaper. Fortunately, something happened during treatment with pressure in one of the hanging bags and we had to stop it early. I got through it.
Tuesday, the control unit arrived at my house. The box was huge......HUGE. We could not even lift it. I told them at the clinic that I was not going to replace it myself. NO way. Since we did not know when it was coming, because they screwed up the shipment, we couldn't schedule the technician. But we got it, he was a doll and came right out and put it in. Changed the pack and took everything down to our garage to be picked up to go back to Nxstage. There was no way my 75 y o hubby or I could have down that. We couldn't even get the straps off the padding. Thanks, Nxstage.
Meanwhile, I am still pooping my head off. The next treatment really scared me. My heart rate went way up. I got through treatment but then the rest of the day, it was over 95 to 100. It was like my throttle was stuck. Not a pleasant feeling. I am trying to make merry with Christmas decorating and my heart is pounding in my chest. Something had to give. I was drinking water like crazy and eventually it came down. I stopped the explosha, the antibiotic was done. The itching, of course, got worse, but I'll put up with that over being dehydrated. And so, by Sunday I was feeling much better. Don't mess around with getting dehydrated. Very dangerous. My next treatments went fine, and I thought." ok, were done."
OOOOOOHHHHH nooooo. My hubby seemed to have caught a head cold. He had no temperature and was stuffy and coughing a bit. But even he said it was not that bad. On Sunday night, I had a stuffy head. That happens often in the dry air. Did treatment on Monday morning and noticed my temp was up. Took when I was done, and it was higher. I kept checking it and when it went to 101, I knew I was in trouble. I had an old Covid test and just to be safe, I did it. And of course, it came back positive. I did another, same thing. I tested hubby.... positive. I called my PCP, who really treats me well and got me in that afternoon. I told her the test were expired, and she said, they do not really ever expire so positive it is. I had COVID. She writes a script for the only renal safe anitviral I could take and off to the pharmacy we go. Get there and was told they would not fill it and they had to call the doctor. It was now almost 5pm the day before Christmas eve. NO one was there. I explained, crying, to the pharmacist that I am a stage 5 dialysis patient, and this was the only medication I can have for frickin COVID.... it wasn't a head cold, it was COVID. Well, I had to pay for it cash. $976.00.
But in spite of it all, we had a nice holiday. I did too much cooking and I am exhausted. I am hoping that this was all the bad stuff and it's out of the way. I wish a wonderful New Year to us all.
first night on pd Claria machine 
