Tuesday, March 18

Little Bit Forward, Little Bit Back (or, Stinky Bag of Bile on my Hip)

It has been just over a month since I had the procedure to put in my PTBD (biliary drain), and I have not known how to write an update post. There is so much to communicate, or so little.
Some days I feel like writing out a post the length of a book chapter. Other days, I just want to write a sentence and post a photo, and leave it at that.

Things haven't gone quite how I expected. In several ways. 
I am always seeking a healthy rapport and clear communication with my doctors, and usually we all achieve that. But in the days before this procedure and also in the recovery time, that did not go as usual. Working with some new doctors who do not know me and my medical history quite so well, and don't realize that I know my way around my chart, my health and the way things work...

About to go into the procedure room.
I think this was right before the nurse gave me a dose of IV Benadryl.
Yikes that stuff is trippy! :

 Based off the first explanation of the PTBD back in January, I had different expectations of how the procedure would go. I was sitting there in the pre-procedure room, after it took the nurse twenty minutes and two painful attempts at putting in an IV (I'm normally a perfect IV and lab poke patient, but she picked an odd area of my arm and I was so dehydrated from the NPO/fasting before the procedure, it turned into a not fun time.) Once she got a line in, she brought in consent forms to sign, and in reading them I started to think I was in prep for the wrong procedure. It did not sound like what my hepatologist had explained to us. I had to wait almost a half hour, on top of the half hour we'd already been waiting, for the doctor to come in and answer my questions. He reassured me enough by his answers to my questions that he and I were on the same page.
Turns out, we learn afterward, not quite. I won't get into the details. At least it was a successful procedure and I now have a drain that can be used in ERCP to access bile ducts for things like putting in a stent, etc. Also, it's been allowing some bile to escape through the exterior line to a drainage bag connected at the drain tube end, which I have attached at all times, flush twice a day and empty about as often.


Sunday morning, first morning at home after my procedure Friday. I felt great that morning!

Upon discharge from the hospital the next day, it quickly became apparent that we weren't given much information that we actually needed to care for this new appendage I had, and hardly had the supplies to do the physical care, or the knowledge to know what to look for as a concern. I gave it some thought for a few days, as I wasn't in the mood to urgently drive up to the hospital to see the same doctor and receive more vague instructions, or be sent to the ER by my much more concerned doctors, plus I was in a LOT of pain. (The pain, I figured out on my own in week two, came mostly from the drain going into my abdomen right above my diaphragm - with every breath in, it would push on the tender area and hurt so much! Also, I discovered, if I ate more than a small amount of food and did not space out my meals into tiny ones that took all day to eat, my guts full of food, which run right under the exit wound, would push on it and cause quite a lot of pain. Ouch!


The drain was put in the middle of my abdomen because it could not go on my right side like they normally put them. I got to see this on fluoroscopy film later, it was pretty cool to watch the moving images in 3D of the right biliary tree spinning around on the screen. It was not cool to see how bad things look - my right sided bile ducts are nearly defunct. Perhaps a more blunt doctor would say they are defunct. They are shrunken, twisted, knobby, narrow tubes that look like knarly strings of yarn that a cat or child got to and twisted or tied knots in repeaedly. Or, they also made me think of a compacted, spiral strand of DNA gone very wrong. Basically no bile gets through them. 
What amazes me is, that they could get so bad without much indication. It must have happened over several years, and the only sign I've had that something was funny is the dull ache I sometimes had and have in my upper right side.

The main point is, it's been nearly five weeks since the procedure, and we're just now figuring out that the site may be infected. My recovery took much longer than the doctor expected. I have been the most proactive I could be, I just kind of fell through the cracks on this one. The good thing is that Ry and I spoke with the hospital administrator in charge of patient care, and we were able to give great feedback.
I'm not a whiner, I'm not a complainer, and I hate raising any negative point without having a solution to offer as well. But in this case it just happened that multiple things were dropped, all for the same patient (me), and it can at least be a learning experience for all of us.

The good progress that was made is that for several days after the drain was put in, what seemed to be stones (bile stones? I don't know what they're called when you don't have a gallbladder) were coming out into the bile bag several times a day. They were not large, but it was good to see that they were coming out, especially since I didn't know they existed! Also, my bilirubin (albeit slowly) started dropping almost right away. My eyes looked less green/yellow, and my skin as well. Some days would look worse and some much better.

Me and Ry doing an eye/skin color comparison.
On the left: Jaundice / Right: No jaundice!

Unfortunately, though the docs said it can take six to eight weeks for jaundice to clear after a gradual build up over time like I had, and things were slowwwwwly but surely improving... things have now plateaued, and my Bili number actually went UP last draw, and my skin and eyes are not looking too good. A little girl at the park came right up to my face as I sat on a bench the other day, and said, "are your eyes green? Why are they green? Is your skin green??" in disbelief. I told her it is because I'm extra special, and she said, "Oh! ok." And ran off to play.
 A few minutes later though she came back to stare at me. Lol! I asked why didn't she go play, and she said, "Because I want to sit by you, you're extra special. And really pretty!" So, what she lacked in personal space awareness, which really comes later in life anyway, she made up for in sweet compliments :)
It's just funny, I don't notice when the jaundice gets severe, or I tend to think I look better than I do, then we go out somewhere and people give me strange looks, and then I remember and feel bummed that, darn, I must not look too good after all, or be making progress after all.

I have a couple appointments coming up with liver doctors in the folllowing weeks, as well as more labs to keep tabs on my counts. I had to get a blood transfusion about two weeks out from the procedure, as my hemoglobin isn't staying up where it should. My hematologist thinks I am bleeding somewhere; we don't know where. Probably in my guts, though, because I had to switch back to Tacrolimus for my liver transplant immune suppression, and that tends to make my colitis flare, which would cause bleeding in the guts somewhere. The Cyclosporine which I was most rcently taking needs bile to be digested probably and keep the liver transplant safe... couldn't keep taking that when my liver and bile aren't working right. If I keep requiring transfusions, we will probably have to start discussing colectomy and an ostomy bag again as we were last spring, before the ITP went away. Hmm... carrying around not just one stinky bag of yellow green bile, but two bags, the other filling up with gut waste. Oh boy! I don't even know if I'm strong enough to go through that colon surgery right now, but we'll probably discuss it soon.
[So, what was the toughest decision YOU had to make today? Lol! I hope it was something fun like which pair of new shoes to buy, not which stinky waste bag you want to carry around with you for the next decade... or for life! ;) ]

I don't envy my doctors, that's for sure. What a balancing act they are doing, with all the body systems that are acting up, needing to stabilize and help those, while wanting to keep the still-healthy, quiet things that way. Pray for their wisdom and for perfect solutions to be thought of. I have some amazing doctors (the best team I've ever had in all these years of medical care).

I had a liver ultrasound on Thursday, to check on veins and do the biannual check for liver lesions or suspicious bile duct changes...
(Yeah I'm 29, and they were looking for pre-cancer or cancer. That's one part of my life.)
This is an every six month thing, probably more often if my liver doesn't shape up soon, and I get placed on the transplant list.
They alternate between ultrasound and MRI checks, because I opt for NO radiotion, NO CT scans.

If this is all pretty technical medical jargon and you don't understand it but would like a summary version, just leave a comment. Feel free to ask questions too. Like I said near the top, I don't even know where to start with everything that's been happening. I just started typing and here's where I ended up this time.

The main thing is, things aren't going as well as it seemed they would be, as presented to us before the procedure. But no one can control that. I got through it, and at least doctors now have an access point to my bile ducts, whereas before they did not, and were not going to put me through a third ERCP attempt to try that again.
I am taking care of this bile drain the very best I can, I am taking my meds and drinking my veggie-fruit smoothies (I crave them now when I miss a day!) to help my liver the most I can. And I am hoping for the best, declaring God's promising, and leaning on His truth! He's never failed, and He won't start now!!!

Thank you so much to the friends-that-are-family who brought us dinners for the first two weeks of this challenging time. You were our angels!
Thank you for those who continue to pray with us believing for the miracles we need, those of you who speak affirming words of health and agreeing words of healing over me, those of you who sent cards, letters, or very meaningful gifts like the custom made bracelet that says, "she chooses joy." Talk about motivating to keep up this fight! And some days boy do I need that motivation from those of you so dear to me.

Onward, forward, moving along... life goes on! I'm still here still breathing still very full of purpose and spunk - God's not done with me yet! ;)

Finally made it back to church last week, and this week I was even stronger!
These two lovies in the photo with me are my posse.
They make it all possible - their flexibility and kindness and selflessness and faith.
Yep, that all applies to Ry AND our two year old. She is amazing.
Love you two so much!