Posted 2/20/2014 3:15 AM (GMT 0)
Greetings list!
I had a few bad months since August. Three bouts of sepsis, a bit of spontaneous peritonitis, a burst ovarian cyst, a stomach virus (maybe two) which all added up to five hospitalizations and several confused and concerned doctors.
Fortunately, things have settled down, though questions remain, and so here they are-
I've had AIH for at least twenty years. After the first three years, I was able to get off prednisone and imuran, but the damage was done before I realized I was ill, and so my liver is all cirrhotic. I was listed for transplant while I was still taking the drugs, but in the end, I was very stable and so I unlisted.
I have had a lot of leg swelling for years, but never had ascites in my peritoneal cavity. I have been eating low salt for years, but the legs really got bad about a year ago.
So I started furosemide and spironolactone, and they were great in getting rid of the leg edema.
So, yada yada, in August I got the first bout of Sepsis. The pain was excruciating. The pain was all over my abdomen, and it was so awful, and came on so fast that I had to call an ambulance as I could not drive myself. I was literally crying and moaning, (I am sure, disturbing the other patients in the ER) until some narcotic pain relief was supplied.
I got better, and my liver was ok. Then I got sepsis two more times, and again, my liver was ok, but at some point a CT scan found a teeny-tiny bit of ascites. They got out about a tablespoon of the fluid, and it was infected, but I was already on antibiotics for the sepsis.
But then there was a new problem. Turns out that I developed a hernia on the lower right side, and a big blob would sometimes come through the hernia hole. You could see the lump. And the pain, omg. Worse than the sepsis, and as bad as labor.
MDs also saw that my longstanding umbilical hernia was filled with blood vessels from the portal hypertension. Previously, it was just a blob of fat, but now the blood vessels had moved in.
So, it was finally determined that the blob pushing through the lower right hernia was ascites, encased in some sort of membrane. They decided to double the diuretics, in hopes of getting rid of the abdominal fluid.
So now I take 500mg ceftin daily as a prophylactic measure for the recurring sepsis, 80mg furosemide (lasix), 100mg spironolactone, 20mg omeprazole (prilosec)(for a small stomach ulcer that comes and goes), and Paxil.
Still, the hernia lump pops through -about once a day, but it is small, like the size of a large gumball. Now that I know what it is, when I detect it, I must lie down and massage it back in. If I do not lie down and get it to go back in, I feel sicker and sicker, like, my entire stomach area starts to hurt, and I start to feel seriously ill. But for now, the diuretics are doing their job in keeping most of the water out of my body, and I've never been stuck somewhere where I could not lie down and get the blob to go back in through the hernia hole.
I am too sick for them to operate safely, so I am stuck for now, living with this.
The latest problem is that if I push (when I have a bm, for example), or if I cough, I get a bad pain in the middle of my stomach, mostly above my belly button. Sometimes, the hernia blob pops out, but it does help if I press hard on the area as if wearing a girdle, or some sort of truss.
But, lets say I cough hard a few times without holding or otherwise supporting my entire stomach. If a cough catches me off guard, my entire middle of my whole stomach feels terrible. The whole thing just hurts and I feel nauseated and somewhat light-headed. It is a real problem, especially when I am not at home.
The same thing occurs when I walk for more than a few minutes, but then again, sometimes I can walk (shop, walk the dog, etc), and I am fine.
The MDs don't really know what it is. I wear a very tight wide belt at times in the area of the lower right hernia. That helps. And I find, that if I am wearing tight pants that sort of hold me in, I feel better. On the other hand, sometimes tight pants make the umbilical hernia start to seriously hurt. There is no way of knowing when this will occur.
Along with the increase in my already bad fatigue problem, the umbilical hernia, and the lower right hernia, the diuretics are drying me out.
I have had Sjogren's syndrome for thirty years, and it has always been very manageable. But now, my eyes are drier, my nose is drier, and it tends to bleed and get cuts, my vaginal area is doing ok, (I know you are glad to hear that!) but I now have dry skin in the area. I got thrush in my mouth, and I keep getting cuts in my mouth that hurt like heck and are not healing in a timely fashion. I took oral nystatin when the thrush was bad, but now the problem is just having a very dry mouth and the cuts that do not heal for weeks. OTC dry mouth products all have artificial sweetener in them, (sorbitol, xylitol, etc), and artificial sweeteners make me feel nauseated. (I think I am allergic to them, or something). So they are not helpful. And my skin is crazy dry, but that might be to this horrible winter weather in NY.
Frankly, while I am very happy that my liver keeps chugging along in in its usual cirrhotic way, the increased fatigue, the dryness and mouth sores, and the hernia problems are having a very detrimental effect on my quality of life.
Since I am not nearly sick enough to start the process of becoming listed for a transplant, I'd like to be able to make the most of this time, prior to the next cirrhosis related problem beginning. It is only a matter of time. While there is no autoimmune activity, the years of bad cirrhosis is starting to take its toll.
Has anyone experience anything like this? My MD in NYC is a top hepatologist, and he has been my hepatologist for the past twenty years, and my local gastro is terrific - brilliant, actually - and he works in tandem with the hepatologist in NYC. I think I have a great team on my side. And medically, I suppose I am stable, but in terms of my quality of life since August, things are pretty darn sucky.
Any ideas are appreciated for any of the problems presented. Thank you for reading this long post.
While I am mostly a lurker, the posters on this board are always included in my prayers. Thank you in advance for any advice.
Schimbare
(Susan)