Back in Sept. my Ascites had gotten so bad that breathing had become very difficult. My hepatologist wanted to increase my diuretics. I was already living in my bathroom so I wasn't thrilled with that idea. When I could no longer walk from the bed to the couch in my tiny one bedroom apt. I drove myself to the local ER (stupid, I know). Within 10 mins of walking though the door, I was in the Xray room. My right lung was 90% collapsed. They did a tap but could not get all the fulid out. The hospital pulmonologist recommended a thoracotomy. My breathing is great now. But the pain from the surgery and the chest tube is unbearable at times. I can't do much with my right arm anymore. When I looked up thoracotomy on Wikipedia it actually mentions that this procedure is one of the most difficult surgical incisions to deal with post-op.
Long story short, have an advocate, do your homework. My hepatologist said that I should not have had it done. He said that the sealing would not last. That it never does for people with PSC.
I'm sorry you had that result, Mary, and that your hepatologist thought the thoracotomy shouldn't have been done. Makes me even more determined to only go to the hospital where the Transplant Center is. There is always a hepatology fellow on call and I call them and tell them I'm coming to the ER. Otherwise, not many docs know about PSC and long-term treatment. I hope your pain abates. -Dana
My problem is that I live 2 hours away from my transplant center. Part of the stipulation for getting on the transplant list was to live with or near my caretaker (my sister). Also to move closer. I use to live 4 hours away. In moving I had to get all new doctors. My local GP never heard of PSC, my local GI had 1 other patien with PSC. Soon as I get to the ER I give them all my Hepatologist's information. In the end they usaully end up transporting be to the TC. It does get annoying.
Mary, I hope I didn't add to your frustration. One piece of ammunition that I added to my stockpile was a one-sheet medical history that included my doctors' names and contact info, diagnoses, recent procedures (like ERCPs, endoscopy, etc.), and my list of meds. Plus this tidbit - I have cyclic neutropenia and my WBC never gets above 5000 so is not a reliable indicator of infection, plus the doctor's name who discovered this (he is my internist). Both nurses and doctors latch onto that sheet like it's gold. All I know is that when you go to the ER you already feel like crap, so any way and any thing you can prepare yourself for those times, it's a really good idea. I'm a helluva advocate for someone else, but when I'm sick and no one is there to really do it, I still have to have tools and information. And I like what you said - do your homework. Yes ma'am. Because you will be the expert in the room (and don't be afraid to lord it over them either!). The whole ER experience is so annoying - well put.
Mary said:
Thanks Dana,
My problem is that I live 2 hours away from my transplant center. Part of the stipulation for getting on the transplant list was to live with or near my caretaker (my sister). Also to move closer. I use to live 4 hours away. In moving I had to get all new doctors. My local GP never heard of PSC, my local GI had 1 other patien with PSC. Soon as I get to the ER I give them all my Hepatologist's information. In the end they usaully end up transporting be to the TC. It does get annoying.