This will be a long post so settle in a comfy seat, put your feet up and be prepared to read...
I went into the hospital on Thursday expecting to get my picc line placed on Friday, have a CT scan at some point and a colonoscopy on Monday. My biggest worry was the picc placement given the reaction my body had last time to it. Turned out to be the least of my worries...
Thursday night they wanted to get an O2 reading done on me again. I had had that one back in November after my 3 week IV course and it showed I didn't need O2 with sleep. Of course my lungs were in great shape so I didn't need it. Thankfully they did another. However, it was different than the first one I had. They hooked me up to the finger monitor and the monitor was hooked into the nurses station computers. Unfortunately the sound could not be turned down lower than 10% so when I would dip below 90% it would beep and I would hear it. Every time I relaxed and just about feel asleep I would dip, it would beep and I would wake up. Finally she came in and put the O2 on me since it kept beeping. Slept like a rock the rest of the night!
Friday morning bright and early I was wheeled down to have my scan done. I didn't have my morning meds yet so inhaling and holding my breath was not happening. Of course they ask to do so and I try but I failed. Such is the CF life. By the time I got back to my room the picc nurse was ready to poke me. Dr BE (name has been changed) ordered a shot of Benadryl to be given to me via IV so I would be awake but not anxious. It worked. I was pretty much dead to the world for the rest of the day!
PT came to my room to do a 6 minute walk test on me. I did well considering I am in the throws of an exacerbation. I walked 1270 feet in 6 minutes (average for someone my age is 2500-3000 feet) and only needed 1L of O2 while walking. We were going to attempt no O2 but my sats just standing there were 89%. The Benadryl really messed my lungs up that day.
Saturday was to be the start of my colonoscopy prep. Just clear liquids all day which meant jello and chicken broth. Yum! Sunday I started the clean out part. By the time I went to bed that night I was pretty sure I was ready for the next day. My CF gut had other plans however.
I was able to do the upper but not the lower. I was too full to get any ideas of what was going on in there. When she told me this I got upset. I was frustrated, annoyed, angry and depressed. I had already felt kind of crappy to begin with before the procedure and afterwards just threw me over the edge. When I met Dr BE in my room later I was crying. The nurses were great and really tried to cheer me up. Poor Dr BE. Last time I was in I was crying with him and again this time. The guy must think I am a mess! I could see the sympathy in his eyes and it made me feel better. So now instead of looking forward to a yummy solid meal, I had to do another FULL round of cleaning out. But what was the question.
At first Golytely was the choice. But given that last time I tried it I basically got one cup down and threw up, I wasn't for trying it again. I decided to just have an NG tube placed and have them push the Golytely down in and have it work that way. That didn't happen. We tried the placement and I think I had an anxiety attack during. I could feel it scraping my chest and then I was gasping for air. A cyster had told me getting the tube through the sinuses was painful. Ironically I barely felt that part. They pulled it and we decided to give the Mag Citrate a go. It was not as bad as I had remembered it from when I was 18. I drank 3 bottles of that and stayed up till 2:30am to make sure there wouldn't be a mess in the bed overnight.
Colonoscopy take 2 was a success. I was still not entirely clear but enough so that she was able to remove the polyps she found and send them out for biopsy. So lets review this. Friday night I took 2 ducolax to start the process. Coupled with no food except a turkey sandwich that day, I was pretty empty - stomach wise - by Saturday. Saturday was just clears. Sunday the same thing, but I took 15 one dose packets of Mira-lax. Monday I was not clear at all so I took 5 more packets of Mira-lax and 3 bottles of Mag Citrate
(which is a normal dose for a clean out). All in all I did more than 2 full clean out regimens and was still not clear. WTF?!?!?!? Talk about a slooooow system! I'm not sure how many polyps they removed but when I go to clinic this Wednesday they should have the results. Last time I had a few benign polyps and one that was pre-cancerous. Hopefully these are all benign.
Today I got the results of my CT scan. Well I should say today I was lucid and sane enough to hear the results. It was quite the informative scan I received! My lungs show obvious signs of CF. There was a pocket of infection which of course, was why I was there in the first place. It showed some nodules on my thyroid which my doctor is not so much concerned about, but given my family history of cancer he gave me a number for an endocrinologist to see (he joked that I was on my way to seeing every specialist doctor at BWH! not far off either). My thyroid is working properly though. They ordered blood work to be sure there were no issues there. They also saw lymph nodes in my lungs - odd - that they want to monitor, again because of the family history. So in 3 months I will get another CT scan done. And finally they saw an air pocket below my heart that is undamaged but inaccessible. It looks like I had an infection when I was a child and the healthy lung grew around it and blocked this part off. So basically the lower lobe of my lung is shut off, yet unharmed. It could explain the low lung functions even as a child. That was it for the CT scan. I told you it was informative!
My culture showed that the Steno Malt is still there. Seems to me it hides when I am "healthy" then rears its head when it feels like it. I have a feeling this is what is going to send me to transplant land much sooner than I had thought. Speaking of which, my records have been sent over so I just need to call and make the appointment to meet with the team.
Funny...after hearing the words the first time I assumed, or rather hoped, it would not be mentioned again for a bit. Now every time I see the team it is mentioned. So I guess it really is something they feel I need to pursue now to be safe. I've wrapped my head around the idea even if I am still unsure why me. Though I know the answer, I just wonder why me sometimes. And not in the "woe is me" way. But more along the lines of "but I'm not THAT sick, am I?" way.
Thank you for reading this jumbled mess of a blog post. I will be sure to keep you all informed of what results come back and all my upcoming appointments I have with the 5 different docs this month...
(edited - this was posted on Wednesday but for some reason blogger was messed up and it didn't register till Saturday)