First, thank you everyone for your support while in hospital.
I don't know what I would do at this point without you..really, I don't.
It was a sheer dumb luck kinda thing that I went in when I did, as they found my THIRD staff infection in my pic line. I think I had been getting sicker and sicker for nearly 6 weeks by the time they caught it in hospital.
They had to sort all that first. I was also able to get a drain (Ill be having another on Monday, after clinic)
Finally, Monday, I got to have the procedure I went in for originally. The Liver biopsy.
They were thinking they would see strange pressures involving the IVC. (Prior to this they had found minuscule blood clots in the portal vein and thought THIS was what was bringing on the late ascites, to be cleared up by 1800 mil of Deltaparin injections daily. Alas, after over three months, the ascites remained and I'm still on those injections and will need to be for the foreseeable future)
Instead, what they found were high pressures throughout my new liver. The highest should be no more than 12, the specialist told me, but mine was between 18/19.
Portal Hypertension. On my new liver, or in it. We wont know if there is any fibrosis yet or any type of congestion until the biopsy results come back tomorrow. They feel strongly that no cirrhosis will be found.
They started talking about a shunt. And soon. The same thing they wanted to do for me prior to my transplant. There is a less likely chance of HE because that seems to accompany cirrhosis more often than not. But the risk for varacies is back again also.
I feel like I've been punched in the gut. Literally. And until those biopsy results come back, it wont be a full diagnosis.
My drain specialist, bless her, came and sat with me. I cried. I finally told my partner. He was at his office, and was getting very upset over not knowing.
Then they sent in my transplant coordinator. They NEVER do that. That only happened because they wanted to see how I was taking it all. Was I ok? They were trying to make me feel better about what is happening. I get it.
I know, I know..lets wait and see what happens..but it already has, right? the ascites is back. The pain is back, as it being tired all the time.
My partner is yelling and blaming them..saying they knew the liver was bad..or that they knew this transplant was only some kind of stop gap. Of course that is not true. He's just scared..and it's easier to be angry than to feel defeated, or to feel fear.
My consultants looked stunned when they came to my hospital beside. I think she also was upset in that the radiology dept. head, who did my biopsy, had already spoken to me..I think she was not ready to answer questions, and to be fair..until those other results come back, we dont know how bad the liver is doing.
Does ANYONE have ANY experience with this? Portal Hypertension accompanying ascites.
I'm praying they caught it early enough..the last biopsy few months ago showed no pressure issues.
Not trying to be a baby, not trying to be ungrateful..god knows I am Grateful. . There's every reason to believe I would be dead had I not been transplanted last October.
But..I just don't understand..how can this be happening? HOW???
They were so happy with my liver..They just smiled and beamed at my beautiful young new liver. Did I do something wrong? Seriously..could I have of? without knowing? my diet? wrong medications? Not enough exercise? There HAS to be something..right?
sighs. sorry to go on and on..I feel like Im working through some emotions while writing this..forgive me me for that. I dont want to delete this entire post and rewrite it. Why? laziness. plain and simple! lol
Thanks in advance, for everything you guys do.
cheering you on!