So my surgery was put on hold as we know. I've been healing well. Still in a lot of discomfort. It's such a strange feeling. Oh and the gas pains they told me about - well if I truly experienced them - omg. Horrible. Horrible. A whole day of insane stomach pain. Anyway...
I had my post op visit last Thursday the 20th. Basically surgery started and the surgeons saw my spleen was huge! They also saw my liver and noticed it didn't look so good. They took some pictures and stopped.
They don't think I have ITP. They think I have portal hypertension. I will go in more detail in another post but portal hypertension is a complication from liver disease. The portal vien that carries blood from liver to spleen has to much pressure and becomes backed up and causes the spleen too become congested with platelets ( from what I sort of understand so far :/ ) This causes my spleen to be enlarged and causes the ITP or thrombocytopenia, my low platelet count. So platelets are not killed off they are just not where they are suppose to be. So he wants me to see my hematologist and get a diagnosis. Then we can proceed.
Monday the 24th-
I see my hematologist and he tells me I do in fact have ITP caused by portal hypertension. My platelet count is also 53,000 today. He is very concerned and upset that they did not follow through yet with the splenectomy. He believes I need it done asap.
I then scheduled my appointment with the surgeon for 3:45 that afternoon. I decided I should see my liver dr as well- 2:15pm.
Well I see the liver dr and I tell him they have pictures of my liver at the hospital I am waiting on he decided to check on the computer and see if he can access them. He can. Then he tells me what I fear- I have cirrhosis.
That hurt.
He says I am not in liver failure. Examines me for swelling, yellow eyes all that and I have nothing. He says I need to be back on my meds which I agree. I ask about a transplant and he tells me not yet and that I can live a very long life transplant free with cirrhosis as long as I stay on my meds and they work. They worked before. I hope they do this time.
Now I'm sure your saying why are you going 'back' on meds and not 'continuing'? Well.. When I was on my medication they made me very sick. I never felt sick with autoimmune hepatitis. But once I was on medication things changed and I felt horrible. I had no energy. My legs swelled. They hurt and by the evening I could hardly walk. I couldn't live like that. I spoke with my dr and we agreed to stop as long as I monitored my liver enzymes with blood work and was careful. There were many times when I would get nervous and start my meds for a few weeks. My blood work was always 'ok'. There also was no guarantee I wouldn't hit cirrhosis even on medication. When I was diagnosed I was stage 3/4 of fibrosis stage 4 becoming cirrhosis. When I heard the news I did blame myself. But my dr also said there is no way of knowing what would have happened. I made the decision and at the time it was best. I still stand by it. I know now I have no choice and that's ok. I will do what ever I have to to be ok.
On to the surgeon appointment. I tell him all the info I learned and he has written confirmation from both drs and a letter stating my liver dr wants a biopsy done during splenectomy. He becomes a little concerned and says he wants to talk with them. My case is extremely rare. Not many people my age face this. He wants to make sure that I will be healthy after surgery and that surgery will not possibly do more damage. I really like that he wants to make sure. He said I will hear from him Wednesday before Thanksgiving. If all is good we will schedule the surgery probably for next week.
I am beyond scared. I don't think I have ever said that in a post yet. But I am. I keep reminding myself how confident my liver doctor sounded and everything he said. My liver enzymes in my blood work were also almost normal. I'm hoping that means I have a great shot. I worry about what will happen. I worry about needing a transplant. And I worry about my future. I want to get married and go back to school and have children. I don't know now what is possible. I will have this talk with my dr. Yesterday was just such a shock that I couldn't ask everything.
I have had the most challenging year of my life. It continues to get worse it seems. I am trying to stay as strong and positive as I can. But I really need a miracle. I am not a very religious person but I want to go back to my church and speak with the priest. Maybe he can give me some guidance. Anything that can help me feel better and give me a way of dealing with everything I am certainly open to.
I am very nervous for the biopsy. I really hope it shows something good. It's not good. But I hope it shows it's not as bad as it could be.
I am thankful for all that has happened in some way. I am thankful my knee did what it did a year ago because without that I never would have gotten here and I never would have found any of this out. That could have been worse. Way worse.
I have made it through all this other stuff I will make it through this! I have so much I want to do I won't let it stop me. I can't :)
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