The last couple of weeks have been a bit rocky to say the least. Last week especially. I typically get my weekly labs done on Tuesdays. They run a CMV, EBV, CMP, and CBC each week to watch my blood counts and make sure that I am not exposed to a couple viruses that can be very dangerous for someone with a compromised immune system. Anyway, that Friday I got word from the doctors that my test showed up CMV positive, but they were not really sure if it was an accurate result because I have always been CMV negative, have not been around anyone or really been anywhere. Also, the positive result was on such a small molecular level that it could have been a contaminated blood draw. Thing is there is no way to know for sure. And, seeing how this was on a Friday and the blood tests are shipped to Seattle they did not want to wait for new results in order to treat the virus. So, to be on the safe side they started me on Ganciclovier. I was supposed to start on Friday night but there were some communication problems between the Seattle and local offices so it was pushed to Saturday morning. I was scheduled to get the meds twice a day at the hospital for 7 days.
Saturday morning when I got to the hospital at 6 am for my treatment they did not have the medication ready and no orders from the local doctor for a line to be placed. They told us to come back at 8 am so they had time to get things ready. We told the nurse that my veins are not good and it's hard to get a blood draw on me let alone an IV so getting the order for the line is really important. Unfortunately when we got there at 8 am there were still no orders for a line and the nurse who was on at 6 (whose shift ended at 7:30) did not mention to the new nurse that these things needed to be done. Nice! So, after looking at my veins and determining that they could not get an IV on me she called the doc on call and got the order. It was noon by time the PICC line nurse could get there and then more problems. She tried getting the PICC in to the vein usually used only it would not work on me, so she had to pull the PICC out and try in a different vein. Finally got done around 1:30 and they decided that since my doses were to be every 12 hours and it was just a few hours till my next dose that they would skip the morning dose all together and I would start at 6 pm.
As if that was not enough the medicine made me REALLY sick. I felt better before starting the meds than when I was on them, and interestingly about 1 1/2 days after stopping the meds I felt great again. I got headaches, bone pain, nausea, and fatigue....SEVERE fatigue! I was so out of it that when I would get home at about 7:30 I would sit down to watch some TV and then fall right asleep. On more than one occasion I didn't even get dinner because he couldn't get me to wake up. Then the next morning I could barely pull myself out of bed in order to make it to the next treatment. I'd again come home and almost immediately go right back to bed. It was awful how sick and fatigued I felt.
Monday (one week ago) I went in for my repeat labs, they were sent to Seattle and on Wednesday morning I got the results. I am CMV negative. I can't tell you how happy I was because this medicine was making me so sick (not to mention how toxic it is....even more so then some chemo's I have been on....the nurses had to put on gloves, a gown, cap, mask and goggles in order to give it to me). Then I got a call from the local doc saying they wanted me to continue to do the meds "to be on the safe side" until Saturday morning. As you can imagine I was not very happy about this. I explained how sick the meds were making me and the nurse told me to do the treatment that night (Wednesday) and if I still go sick (which of course I did) to call the on call doc and let him know. So, I did and he discontinued the medication. Thursday, Thanksgiving, I was tired most of the day but had a wonderful dinner at my parents house. I hope all of you also had a good Thanksgiving! :)
Friday was a great day. I finally felt good. Saturday, well that was a different story. My arm really started to hurt. I didn't think too much of it at first because I just figured that it was tight muscles or something. After a couple of hours and a shooting pain that started I called Option Care (who did my PICC line maintenance) and they had me come in to look at it and change the dressing. The site looked good and the nurse wasn't sure why I was having such pain but when she went to flush my line it was a little difficult. She recommended I call the PICC nurse to see if there is anything I should do. I called the hospital and it turns out the PICC nurse is not there on a regular basis, she is more on call than anything. But, the nurse who I talked to said they were not too busy and could get me right in a room if I wanted to just come there and have an ER doc look at it. So I did. Turned out the PICC needed to be pulled. I have not one but two blood clots. This is why I was in so much pain. They started me on a blood thinner, pulled the PICC and I was able to go home.
So that's how the last couple of weeks have gone for me. Hopefully yours have been much better! I hope you are all well. Take care.