Hi everyone,
Just thought I'd write an update. I just got out of the hospital yesterday. I had been bleeding again, a lot. Not a lot in terms of blood, but a lot of times a day. For a week, 2, 3 or 4 times a day. I really wanted to have surgery again, but my doc's said no. They just put me on IV's which I knew wouldn't work. Then I had a week of no bleeding (nope not due to IV"s because I got mad and didn't start them till 5 days after I was supposed to) and then on the day I was to go to the doc's, I started out my morning by bleeding more than the other week. I bled again at the doctor's office, and they still didn't want to do anything. I was so frustrated. I knew it would just get worse. Well, I had 3 more that day for a total of 5.
By Friday, I had a large one that seemed to just go on forever. I actually got a stool so I could sit down with my head over the sink. It finally stopped, but 3 hours later it started again. My husband just walked in the door as I was getting the stool to sit. So I called the doc and this time talked to a different one. Told him I just couldn't do this, that the bleeds got much worse that day and I even took pictures so they wouldn't think I was faking about the amount just so I could have surgery. He called radiology and had me come in, to have surgery the next day. As I was trying to get ready and pack a bag, I had a large, long bleed. My husband was so afraid to drive me to the hospital, it's about an hour away. We were trying to figure out each hospital en route in case it got to be too bad. But I made it. Got in a room, long story, but moved to another room and promptly started bleeding. A LOT. The nurses were freaking out. My husband was out getting my stuff from the car so I was alone. I actually clogged up the sink because clots kept coming out and had to move to the trash. It was a long hard bleed. Finally it stopped. It was so weird then because they were trying to get me settled, trying to clean up the mess, and one of the nurses was putting another extension on the 02 tubing so I'd have more room to move. When she pulled it apart and the 02 stopped, I immediately started bleeding with only about 5 minutes rest from the last time. It was again bad and scary.

Well, finally it stopped. I was too afraid to go to sleep, but just read and stared at the wall. About 1 am, it started again and I had two more. Finally I made it to the morning and had surgery about 9am. The surgery went well in and of itself. But they had to block some significant arteries or veins and I'm in a lot of pain. My arm hurt so bad as one of the arteries also went to my arm. Plus as soon as I was able to sit up, I started throwing up. Miserable. That went on for 2 1/2 days. We tried all kinds of pain med's but nothing much helped . ( no not for the throwing up silly, I was on something for that too, can't remember the name, but each time they put it in my (IV, I threw up) I'm just doing a low dose fentanyl patch and Motrin for the inflammation. The surgeon said that I would be in pain for a while, that they had to go deep and do a lot of repairs. He said each time I have to do this it is going to get worse and worse, as they have to go deeper into my lungs and the veins are being recruited from all over so that the other body parts will hurt too, like my arm. They saw veins growing from my diaphragm, something they've never seen before. And there are a lot in my shoulder area, upper chest, that they couldn't get too but they will in turn be a problem.

So, I'm home, feeling sore, but much better than bleeding. I'm hoping I will have my transplant before I need to do this again. So much bad news about my health in such a short time is so hard to hear. But it looks like transplant is the only way. Now if I can only make it. Deep sigh.

So that's it for me. I have to go figure out what to have for dinner. I'm not sure which is worse, having to cook and clean or having to sit at a restaurant. Hmmmm, sleep, I'm sure that will help. Think I"ll do that!
Bye