November 20, 2018

Liver Clinic Follow Up

I had my follow up at the Liver Clinic on yesterday and it looks like we are ending this year on a high note!  The doctor was happy with all my recent lab work and scans. We talked a little about everything, I got my flu shot and we were on our way!  But I thought I would share a quick little run down for those who wonder what these appointments are like.


I got checked in and they gave me my hospital bracelet. The hardest part of my appointment is always the waiting to get into a room.  We are supposed to arrive 30 minutes early but it usually takes a good 45 minutes before you are called back.  And there were quite a few people there this morning so I knew it would be a little wait.  As long as I have been doing this, I still get a little antsy while I wait.


Once I was called back it was the usual weight check and vitals.

Weight: up 2 lbs.
BP: 103/54
No fever
Good O2
MELD Score: 15

We went over all my meds and any changes.  I am not currently on much.  I take the Kristalose and Xifaxan for my Hepatic Encephalopathy, Coumadin for my blood disorder and a probiotic.  For a while there I was taking a few more things but I'm down to next to nothing.  And I'm thankful to only be taking a small dose (8mg) of the blood thinners.  At one point I was taking 25 mg and things were a little crazy


The clinic has a handful of doctors in rotation and we don't get to pick anymore. The first few years I got to have the same doc and he was the best.  And I really like the dr I have been seeing now too.  Ive only seen her my last 2 visits, but she is nice and always takes the time to talk to me about everything.

She's not worried about my weight gain but said to just try to keep it down.  She explained that eventually I will start to retain water and being overweight on top of that will make things harder.  My other doctor would have been all over my butt about it.  We talked about my heart attack. She believes that it was caused by my blood disorder because I have no other risk factors. But no one really knows for sure. She asked me if I was planning on getting pregnant again.  Um, no.  Even if David was giving me a sad face from across the room.  That man has lost his mind!

She also suggest I get a blood pressure cuff to track my BP and see if it explains my dizzy spells.  My heart rate isn't spiking anymore so thats good so she just threw that out there as another thing to keep an eye on.  After going over each of my doctors diet restrictions she asks "So what do you eat?"  I confessed that when I do eat, I eat everything just in small portions.  I try not to eat much meat, I am careful about what veggies I eat and yes sometimes I make unhealthy choices, but as long as I keep in to a minimum, I don't notice any major problems.  I know I need to rein in in a bit, but like I said after the holidays.  Not that I won be watching what I eat over the next few weeks, but Im not completely cutting things out 100% just yet.  We will revisit that thought in January! And Im not giving up my gummy bears!

Overall, she was impressed with how stable my health has been.  I have managed to stay out of the hospital.  Aside from the heart attack last year,  there have been no big changes in my overall health. I haven't had any fluid retention in my belly.  And the rest of the issues are all expected.  Sleep, appetite, confusion and such. 

David took me out to lunch for not crying when I got the giant needle in my arm.  Ok, mostly it was because it was lunch time, and I didn't make breakfast.  The needle wasn't even that big.  The nurses face when she pulled the needle out and discovered that I am a "bleeder" was fun though!

I have to have scans done again after new years and I have another follow up in the Spring.  Living with a chronic illness isn't easy.  The juggling of appointments and tests and medicine can really get to me at times. Dad used to tell me that its ok to throw myself on the floor and throw a fit sometimes but to remember that I can't stay down there forever.

Sure, most days I am exhausted before I even get out of bed.  I take medications that make me feel worse and better all in one trip and I will never not have medical bills. But right now, I am stable and healthier than we had ever expected I would be.  I am constantly reminded that it can all fall apart in the matter of hours but for now, I count myself lucky!

Side note.  This appointment marked my 10th year as a patient here.  I have been listed for a new liver for 8 years now.  I have had a few people who have been recently diagnosed with Budd Chiari Syndrome connect with me and tell me that they feel hopeless, scared and alone.  I remember those days all to well!  It was why I started sharing my story in the first place. So that I wouldn't have to be alone and now, neither to they! Im always open to questions so if you have any, just ask!

Wishing you all an amazing week and incase I don't pop in before then, Happy Thanksgiving Everyone!

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