I apologize for not updating my blog but it seems as though each week I have had to be in the ER or hospital for one thing or another. If it isn’t the ER or hospital, it is a PCP appointment, GI appointment or IV iron infusion. Long story short, I have not been feeling well and have been trying to find out why. Even after my J-tube was pulled last month, the pain still comes back with a vengeance. I have appointments set up to see a pain specialist but unfortunately they could not see me until the end of March. Until then, I have been resisting putting myself on narcotic pain medicine until the pain becomes too unbearable.
I’m not a fan of narcotic pain medicine because of how it acts on my stomach and intestinal tract. I know not much goes through it, given I am on TPN, but for whatever reason, my abdomen still likes to distend out making me look 9 months preggers leaving me in agonizing pain which only adds to the chronic abdominal pain I have already. What can you do?
You all know I had a PICC inserted on the 28th of December last year. Being that I am on TPN longterm, I wanted to have something more comfortable, like a port. So on the 28th of January, I received a portacath. It is constantly accessed, but it doesn’t bother me much. It isn’t ever in the way and leaves me free to move around without much issue. I have been able to cycle myself down to a 12 hour schedule, only needing to plug in at night to feed. Every Monday I have a home care nurse come by to change the dressing, needle and take vitals, blood and other stats. I get a delivery of TPN and supplies usually on Wednesday or Thursday. It all works out. It doesn’t hurt like tube feeding did and I attribute that pain to CIIP as discussed previously.
Recently I was in the downtown VM clinic for my third round of IV iron infusions and on my way home (20 minute drive), my feet started to swell, my joints stiffened up and became extremely painful, and breathing was difficult and painful. Once I got home, I called my doctor and they instructed me to get myself to the nearest ER. The second picture above is the result of me making a visit. I was hooked up to every monitor, had breathing treatments, an EKG, chest CT scans with contrast, xrays, the works. I ended up staying the night for observation and was released the next afternoon. I haven’t felt the same since then. I still suffer extreme nausea, fatigue, migraines and abdominal pains even though I haven’t eaten anything. I have an appointment on Tuesday for a follow-up with a fill-in doctor since my PCP is out of town for the week. I have lots of things to go over with him, so I hope he is ready.
