I was taken OFF the transplant list

After almost 13 years on the liver transplant list, I have been taken off of it.  Hearing those words were almost as hard as hearing that I needed to be put on the list in the first place. But its done. For now anyway.

So why was I taken off the list?

One of the reasons is that I am no longer seen at the clinic in San Antonio and have established care here in Houston with Dr Galati and his team at Liver Specialist of Texas.

The second reason is that I am stable. Over the years of being listed, my numbers didn't change much. I didn't get better. And even though my liver did progress from fibrosis to cirrhosis, nothing completely failed. My liver, as ugly and stiff as it may be is still in there trying to do the best it can.  And being on blood thinners was pretty much the only thing that changed my MELD Score. 

So since I have settled in with my new team and things seem to be holding tight, the Doctor suggested I be taken off the list and discharged as a patient with them.  Personally, I think I may have outgrown the clinic there anyways. Or overstayed my welcome. But Ill just stop there and save that for another time.  

So what does it all mean? 

Am I still sick? Yes.  Over the last 13 years my liver has actually gotten worse. But its still in there trying its best. Do I still have Budd Chiari Syndrome? Yes, the damage from the clots has gotten to the point of no return. Even though a healthy liver can regenerate, Im well past that.  And because of my cirrhosis, I still struggle with Hepatic Encephalopathy. I still have to take medication to make sure that the toxins my liver no longer filters out of my bloodstream are removed in other ways.  Hello Lactulose! 

Do I still need a transplant?  Technically, yes.  There is no cure for Budd Chiari Syndrome outside of a complete liver transplant, so if things do start to get a little wild, that will be my only option. 

What changes now?  The biggest change for me will be that I no longer have to do lab work and appointments with the liver clinic in San Antonio. I have been completely discharged from their care.  The doctor here has already discussed doing the evaluation to get me listed here. So who knows how long it will be before that happens. Im not in a rush.

Its a done deal.  Its weird to think that for so many years I felt like I had a plan B and now Im out here just living.  Maybe it was a good thing? Maybe not? But as with all things in life, all I can do its live each day to the fullest and be prepared just incase. 

Its hard to believe its been so long since I was diagnosed.  These were my notes from that call. I remember the rush and panic over the following days. I remember the way my teeth chattered as I tried to tell David what the doctor said. I remember starting this little blog just a few weeks after this because I could't find anyone else out there with Budd Chiari Syndrome who had survived. By the end of this month I was sure I was not even going to make it to the new year. And I sure didn't think Id still be here all these years later.

Life got flipped upside down. And then it balanced out. I figured out how to live with it, even after a few more diagnosis followed. I just kept going. Good days, bad days, kept going. And here I am 14 years after posting my first post here.  I can see now how, I stopped posting as my health stabled. Funny thing is, Ive had so much to say but felt like it wasn't significant enough to share for some reason. Like being stable meant I couldn't complain or talk about it. 

Like I wasn't sick enough.  I FELL FOR THAT?  I guess if I can't share my getting sicker journey, I can share my staying stable journey. Im not trying to get any sicker with out my safety net. Maybe it is time to start believing that my story still deserves to be shared. Im off the transplant list! Im not dead yet! 

So I guess the  story continues!