My CF likes to keep me on my toes and for no obvious reason my last clinic visit (one week ago) was an utter disaster. Weight was down (just a bit) and my lung function tanked. I had been very short of breath, but I didn't feel sick. I could manage my day to day life and although I was a bit more tired and very breathless I really didn't feel like I had a major exacerbation. And yet my lung function was a pitiful 26%. Yeah, pitiful! A few clinics ago I was on top of the world at 38% so to drop so significantly without having an obvious infection or any kind of virus was pretty shocking. Needless to say, I wasn't going to mess around and I agreed to IVs and a quick stay in ICU for desensitization.
Just like my last desensitization after several days (3 to be exact) of waiting for a bed to open up I was admitted in the evening, but there were no plans to start the process until the next day when the allergists would be in. After a lot of frustrating issues with meds (I really hate being on any floor that isn't a designated CF floor) and a very late start to treatments I was told I was being moved to isolation. When I inquired about isolation I was told something about a potential issue with a nontuberculosis mycobacterium. Not the news I wanted to hear!! NTM is one of those bugs (like MRSA) that I just never wanted to deal with. (Later I looked up my new cultures which included 4 new bugs, but none of them seemed to be a NTM. I did have a few that were labeled "concern of infection control" so maybe that was the issue. I am still not completely clear except that when my doctor found out I was in isolation he was kinda upset and said it was absurd that they have to put me in a negative pressure room due to any of my bugs).
The next day I had my desensitization in my isolation room and by the time I completed the process (which was basically the same as last time) I was released from isolation and was told I would be moved once again as soon as a bed on the CF floor opened up. After more issues with meds including the nurses losing my Orkambi and the nurses refusing to give me more enzymes because I had my prescribed "3 times a day" dose of enzymes already I was finally moved to the CF floor. As I was being wheeled into my regular floor I felt so much relief to be around people that actually understood CF.
By Saturday afternoon I was released to finish my course of IVs at home. I was relieved to be out of the hospital and back in my own environment, but of course as luck would have it, the drama was just about to begin!
Showing posts with label Desensitization. Show all posts
Showing posts with label Desensitization. Show all posts
Friday, March 30, 2018
Wednesday, March 4, 2015
Antibiotic Desensitization
I wanted to describe the process of desensitization because before my last admission I was pretty clueless about. It was actually much easier than I anticipated, it but was something I was very nervous about prior to actually going through the process.
This seems to vary by hospital, but my hospital requires a stay in ICU to be desensitized. This means you have heart monitors (5), an oxygen monitor, a constant temp monitor, a blood pressure cuff that takes your blood pressure every 15 minutes, and of course your IV so needless to say you can't move much. The downfall to this is when nature calls you are at the mercy of your nurse. I had to buzz the nurse every time I needed to pee. Once the nurse arrived she/he would have to unhook all my monitors and then pull the potty out from the counter it folder into. I don't know if you can even picture that because until I saw it I would have been like, what? But basically they have a cabinet and when you open it there is a toilet that you can pull out, use, flush and fold back into the cabinet. Although my nurse was the one that had to flush and fold back under the cabinet. Then I would be hooked up to my monitors again until the next time I had to pee. It was not my favorite way of using the bathroom and I tried to avoid going as much as possible. Healthy, I know.
When I got to the hospital I didn't actually start the process or any meds until the next day which made it feel like a super expensive hotel without the perks of a comfortable bed or any privacy. The next morning they started setting up my room for the desensitization. I was totally calm about the whole process until this point. They started to fill my room with "just in case" supplies. It actually made me nervous as more and more supplies started to fill my room in case, oh I don't know, I went into anaphylactic shock and tried to die on them. My heart rate shot up and the alarms on my heart monitor kept going off, which was slightly embarrassing.
A very diluted version of the medicine was given over 15 minutes and then a slightly stronger dose of the drug was given for 15 minutes. This continued for varying times over the course of four hours. The allergist had to stay with me for the entire four hours plus a few more to ensure I didn't react to the drug. The lack of privacy was probably the worst part of the whole process, I doubt he liked that part very much either. Once they knew I was okay I continued the drug like normal.
The next day another allergist came to see how I was doing and explained that the process is hugely successful. I wished she was my allergist the day before because after I talked to her I realized the chances of a severe reaction was pretty slim and I would have been much more relaxed while going through the desensitization.
Unfortunately, desensitization is only good until you stop the drug for 24-48 hours meaning if I ever need this drug (or one of the other four I am allergic to) I will need another trip to ICU. However, besides the toilet issue and the unwanted allergist roommate it is really an easy process.
This seems to vary by hospital, but my hospital requires a stay in ICU to be desensitized. This means you have heart monitors (5), an oxygen monitor, a constant temp monitor, a blood pressure cuff that takes your blood pressure every 15 minutes, and of course your IV so needless to say you can't move much. The downfall to this is when nature calls you are at the mercy of your nurse. I had to buzz the nurse every time I needed to pee. Once the nurse arrived she/he would have to unhook all my monitors and then pull the potty out from the counter it folder into. I don't know if you can even picture that because until I saw it I would have been like, what? But basically they have a cabinet and when you open it there is a toilet that you can pull out, use, flush and fold back into the cabinet. Although my nurse was the one that had to flush and fold back under the cabinet. Then I would be hooked up to my monitors again until the next time I had to pee. It was not my favorite way of using the bathroom and I tried to avoid going as much as possible. Healthy, I know.
When I got to the hospital I didn't actually start the process or any meds until the next day which made it feel like a super expensive hotel without the perks of a comfortable bed or any privacy. The next morning they started setting up my room for the desensitization. I was totally calm about the whole process until this point. They started to fill my room with "just in case" supplies. It actually made me nervous as more and more supplies started to fill my room in case, oh I don't know, I went into anaphylactic shock and tried to die on them. My heart rate shot up and the alarms on my heart monitor kept going off, which was slightly embarrassing.
A very diluted version of the medicine was given over 15 minutes and then a slightly stronger dose of the drug was given for 15 minutes. This continued for varying times over the course of four hours. The allergist had to stay with me for the entire four hours plus a few more to ensure I didn't react to the drug. The lack of privacy was probably the worst part of the whole process, I doubt he liked that part very much either. Once they knew I was okay I continued the drug like normal.
The next day another allergist came to see how I was doing and explained that the process is hugely successful. I wished she was my allergist the day before because after I talked to her I realized the chances of a severe reaction was pretty slim and I would have been much more relaxed while going through the desensitization.
Unfortunately, desensitization is only good until you stop the drug for 24-48 hours meaning if I ever need this drug (or one of the other four I am allergic to) I will need another trip to ICU. However, besides the toilet issue and the unwanted allergist roommate it is really an easy process.
Subscribe to:
Comments (Atom)
