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!

What's Happening

Ok, so I am about a month overdue for a major update on everything that's been going on with me. Our one "real" computer in the house, a little netbook, hasn't had a working screen in almost two years, so when I need to sit down and really blog, I have to make the time to turn it on, plug in the special cord that Hubs rigged up to connect the netbook to the TV, and get a chair over to the spot, hunker down and start typing. And then more recently our little netbook does this really charming thing of shutting off, completely randomly, either while paying a bill, writing a blog post, or worst of all - livestreaming church! Oh well, we make do. I am going to type as much as I can while old Trusty (or Not-so-Trusty) is running, and see how far I get :)

So. I have been out of the hospital for about six weeks, I think, and it has been AMAZING! The weather in Seattle has been out of this world beautiful, and I've been able to catch up on things at home that have been neglected for the past ten months as I was just struggling to stay alive and functioning in the very basic human mode. The other day I finally (as in, a year later) organized the big cabinet we put on the bathroom wall, cleaned it out of everything that had piled up over the year - wax ring for installing a toilet, anyone? - and got all of our bath towels put in the there.

Wow, that felt good to finally accomplish! When everything unnecessary and unused is OUT of a space, and it just has what we use and need, I feel so much better. So yay me, for slowly but surely working on things and getting to enjoy being a wife, mom, and domestic diva a bit again :)

Another accomplishment was finally putting tile backsplashes up in our kitchen, oh, three years after the remodel too place? Again, what a feeling of accomplishment, and security that no water from the sink or grease from the stove will be splashing onto the drywall (which is, yes, still unpainted) and causing issues down the road). I'm so thankful for the great deal on tile that we got, it was just what we wanted and works great in the room. We repurposed shelving from another area in the house, and I've got my open shelving wall and tile. It's looking pretty cute!

One bummer we found out is that there is mold under the wall surfaces in our coat closet, and so alas, ANOTHER remodel looms. It will be the last one, it is the closet in our living room, which is our one remaining room with old plaster walls and no insulation. But finding the time and resources to do that, in an already busy and balancing act of life, is a challenge. Good thing Hubs is always up for a challenge - by fall, we will get it done I think, and be much healthier and cozier this coming winter! 
In the meantime, I have boxes of my crafts supplies, fabric stash, glassware, birthday party supplies - you name it, sitting in my living room, waiting for a finished closet to be put into. Character building, I say ;)

So, moving on from house to health - here's what's been happening:

Going with the most recent events, I am on Prednisone right now in case of liver rejection.
My LFTs (liver function tests - ALT, AST, Alkaline Phos, Bilirubin) have been elevated pretty consistently for a couple months, actually since switching from Tacrolimus to Cyclosporine as my anti rejection med. My doctor is very calm about it, which I really appreciate and need, and isn't panicking, but started me on Prednisone a couple weeks ago and we are going to recheck my labs tomorrow (Wednesday). If numbers aren't improved, I have to go in for a liver biopsy. They will want to check for rejection, as well as any issues like infections and what not. It occurs to me that after so many blood transfusions this year, they will look for hepatitis as well. It will all work out!
Interestingly enough, the reason they can do a liver biopsy without the risks of bleeding is that...

ITP seems to be in total remission!!! GOD IS GOOD!!! My platelets have been steadily climbing since I left the hospital in mid June, and that has been an absolute encouragement. It is so fantastic to get a call from my hematologist or go online to check my results, and find that the platelet number is higher and higher every time. What a gift after such a crazy year of scary-low critical platelets! Most recenty, last Monday, my platelets were at 149,000. The range they call "normal" is 150,000-400,000, so WOW, I was just one point away :)

In light of the elevated LFTs, I went in for an MRI/MRCP earlier this month. They were checking to make sure I did not have any strictures in my bile ducts, as when you have PSC (Primary Sclerosing Cholangitis) liver disease, those can become a problem, and cause back ups and pain, cholangitis infections, and elevated numbers. I refuse to accept that PSC is back in my new liver, despite what the reports may have shown over the past couple years. I believe God healed me with my transplant, and I am sticking with that. And awesome as He is, God gave us a great report on the MRI! No strictures, and actually improved liver tissue in an area that radiology report eighteen months ago said was looking not so good.
Awesome, right?! :)

Finally, the other health event I had was my annual colonoscopy. Woo, party time! (Haha!) 

colonoscopy prep solution

With all of the colitis problems this year, the major bleeding coming from my colon and just being exacerbated by the ITP low platelets, my gastroenterologist and I came up with a plan to start talking about colon removal. The first step in the plan was to even accept the idea. Talking about a simple tiny biopsy and colonoscopy, let alone complete removel of my colon, is very serious when my platelets were as low as they were (8-10,000, consistently). It is much more than an issue of surgery, as there's talk of hemorrhage risk, and also they said I must do the surgery at a liver transplant center, because there is a risk of liver failure when doing abdominal surgery when liver scarring or cirrhosis is evident (so 'they' say). As you can imagine, becoming comfortable even talking about a decision that major was a big deal. That alone took me a few weeks.
Then I started doing research, asking questions, and had an interview with my doc and asked all sorts of things about colectomy, ostomy bags, and so on. If I am not completely healed of colitis, a surgery and ostomy looks like it is in my future. That was another big mental thing to get a grasp of, and took a bit of time.

Snuggles with my girl while waiting for my doctor

My smarty girl, checking me out after she saw my doctor do the same thing :)

The most recent step was to have my colonoscopy, so they have a current picture of what my guts look like to give to the surgeon if we continue going down that surgery road. This wasn't even an option for most of the year, because of such low platelets. But my platelets started improving and we scheduled the procedure, and the day before I went in to get my numbers checked. They were planning to give me a platelet infusion during the procedure, to prevent any bleeding issues, and only take a couple biopsies. Well, my platelets came back so good, I didn't need any infusion and they got to take more biopsies, which is always good for monitoring sake. Woohoo!

Kind of grossing me out, I had a number of polyps in my gut. I've never had that before, even having colitis for nearly 20 years. But they were all biopsied, along with a bunch of other spots of gut tissue - and everything came back clear, no malignancies, no dysplasia! Yeah Jesus! :)
Also, the report, similar to my Liver MRI, came back showing that my guts look better than the last scan, in two areas. There is definitely colitis activity and my transverse (across the top of my abdomen) colon looked worse, but the ascending and descending colon areas are improved. So, hurray for that!

Thankfully, things have been pretty quiet with colitis and ITP these past six weeks. I am so grateful for that! Not having to worry about bleeding and transfusions and going back to Critical Care or riding in an ambulance... phew! Thank You Jesus!
What a gift it has been to be at home, at church, and around our city with my sweet family and incredible friends, just enjoying the summer weather and all that is good in my life. WHAT a gift.

We may live in the 'hood, but our summer sunset views are million dollar :)

Pray with me in agreement for a great report on my LFTs and platelets tomorrow! Once my numbers are stabilized, I get to taper off the Prednisone, which is always a good thing. Last night my knees and belly were super swollen from the side effects. Pred is a great drug in the short term, but so many icky side effects when you have to be on it for a while. Speaking of which, is why I am up before dawn today. (Insomnia is another lovely side effect.) Thankfully in the summer, being up this early, it gets light out early, and I have always loved watching the sun come up. One reason I really loved being on crew in college :)

Today is a new day, full of new gifts, opportunities, and potential! Seize the day - look UP and around at all you have been given - life is good! Xo!

"So if you’re serious about living this new resurrection life with Christ, act like it. Pursue the things over which Christ presides. Don’t shuffle along, eyes to the ground, absorbed with the things right in front of you. Look up, and be alert to what is going on around Christ—that’s where the action is. See things from his perspective."
-Colossians 3, MSG

Update: (I Don't Have an) Infectious Disease [Yay!]

Just a quick update:
I went to my appointment with an Infectious Disease specialist today. She wasn't concerned about anything hinting at a bacterial infection, it turns out that the cultures were probably just contaminated somehow between my surgery and the pathology lab, which is fairly commonplace. So, no antibiotics for me!

The Dr said it is more likely that I had a virus of some kind, and they usually just run their course and that's it. In order to rule out a virus, she ordered a bunch of tests to see if anything shows up that was obviously the cause of my swollen lymph node. She ordered tests for a bunch of viral infections, including the kind carried by cats because of all the nasty poop encounters I've had this summer, gardening in our stray-cat-infested yard. (Oh, those dirty furballs and their nastiness!!! I digress; that is another story for another time.)
From simple Mono virus to Toxoplasmosis, which is a virus found in cat poop, to HIV because I have had blood transfusions before (that one will be negative, I declare in Jesus' name!), I think I set a new personal record for the number of blood vials drawn at the lab - fifteen! I sat and drank two cans of juice before leaving the lab, and oh am I thankful they had juice. It was past lunch time and all I'd had to eat before then was a small bowl of acorn squash and some tea.

So those test results will be trickling in over the next week to ten days, and we'll find out eventually if it was a virus. Post transplant life is never dull :)

A Little Surgery and a Lot of Faith

So, I had a little surgery on Friday. It was ambulatory surgery, which meant I got to go home about an hour or so after the doctor stitched me up. I had a lymph node on my neck swell to a noticeable size a few weeks ago, and when I was in for my annual liver check up last week, my ARNP thought it would be wise to have it looked at and biopsied by an ear, nose and throat specialist (ENT). A "biopsy" turned into an "excision" (by the way, before this week I never knew that word existed, and I hate it!) in which they removed the whole thing so there would be more for pathology to study.

The medical experts looking after me are taking precautionary measures because a lymph node sticking around without any recent obvious infection or sickness is concerning, especially in transplant patients, who can have a higher rate of developing lymphomas because of the years of suppressing the immune system with medication to prevent the body from rejecting the transplanted organ.

The surgery was fine, I didn't even go to sleep (my choice), I just got a little bit of relaxation juice and they numbed the area locally. There was an exciting moment in which my surgeon (ENT specialist) had to move my nerve connecting my neck to my back shoulder muscles out of the way to remove the lymph node. He'd brought up that scenario as a rare possibility/risk of the surgery during our consult, and it was interesting that I ended up being one of the few people having that interesting (and challenging, for him) quirk in my anatomy! He got my attention when that happened, reminded me what he'd said in the consultation, and then let me know within that same minute when he'd moved my nerve out of the way. Riveting, right?!
I enjoy being semi-involved in the medical procedures I go through; it's fun to be able to speak to the team and ask questions, and also answer questions, and learn about what they are doing. I suppose not everyone feels that way about surgery, however, so thank God for general anesthesia for those who want it :)

The surgery took less than an hour in the OR. They stitched me up and sent off the lymph node to the lab where they will test it not just for lymphomas but also bacteria and fungus. What an interesting job that guy has that came to pick it up - transporting specimens. I wonder if he knows what he is transporting each day??
Anyway, then I went to recovery, and after I took a little snooze I asked my nurse for ice water and got a little cup of it. (Not eating for twelve plus hours gets easier with time - not drinking ANYTHING, especially when nursing and being a thirsty person anyway, is no fun!) When Hubs finally got to come back to the recovery area, he brought me my treat of choice, and possibly my new favorite thing: Ginger Root Beer Zevia and a nurse filled my water bottle with ice and I got to sip on Zevia and eat a pear.

Here I am in recovery, feeling less groggy and ready for my beverage and snack:

We stopped at Chipotle on the way home, where Hubs picked up a steak bowl for me - gluten free with extra rice, no beans, no salsa (boo nightshades!) and of course no cheese or sour cream.
Once we got home, per the information given me by anesthesiologist and the nurse anesthetist, I fed Victory as soon as she was hungry. The meds they gave me for the surgery were not concerning or requiring me to pump and dump, and we never saw any effects in Victory to show they got through the breastmilk.

This whole string of events happened very quickly, starting with my liver appointment on Tuesday, seeing an ENT that afternoon, having a CT scan of my neck Thursday and the surgery by another ENT on Friday.
It was a bit surreal to experience it all, to be sent from one appointment to the next, and have that concerned look from doctors and the word "lymphoma" keep getting thrown around.
But I got my bearings and "put my big-girl panties on" as my pastor's wife would say, and realized I just have to do what I have to do. I'm definitely growing in my faith, because I haven't fallen apart into hysterics or a blubbering puddle once! (No shame in that of course, I've done plenty of that over the years!)  I have had a peace that surpasses my understanding this whole week, and I thank God for providing me with that. It's truly been a Philippians 4 peace. I love the way The Message describes it:

"Don’t fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God’s wholeness, everything coming together for good, will come and settle you down. It’s wonderful what happens when Christ displaces worry at the center of your life."

I have been speaking health and wholeness over my body and trusting that Jesus' work on the cross has already provided for my healing of anything that would try to take root in my body. It is more faith testing and more character building for me, and that is exciting in a way because I know that means God has greater purposes for me ahead.

Speaking the Word over my body and my life is not something I always knew about, and practicing it the past few years has changed my life. I highly recommend it for every day, but especially when you are sick or getting medical testing done or walking through a fire of another sort. Nothing happens to you that God doesn't know about, so trust Him and keep your confidence in His promises, and speak and repeat them over yourself. There is power and life in our words (Proverbs 18:21)!

• By His wounds I am healed!  (Isaiah 53:5 and 1 Peter 2:24)
• NO weapon formed against me or my body will prosper! (Isaiah 54:17)
• God has good plans and a secure hope for me (Jeremiah 29:11)
• I have a hope that is an anchor to my soul (Hebrews 6:19)
• "But for you who revere my name, the sun of righteousness will rise with healing in its wings" (Malachi 4:2)
• "For I WILL restore health to you, and your wounds I WILL heal!" (Jeremiah 30:17)

I am still sore around the incision, and OH SO itchy! I did not remember from my transplant so long ago that stitches itch like mad!!! My stitches have Steri-strips on top of them as well, so the corners of those poke the soft skin on my neck and it is just one irritating good time, haha! Thankfully the pain is better each day, I hardly had to ice my incision today. And I got the OK to shower tonight!

That reminds me, not being able to bathe for three days I ventured into the world of "dry shampoo" this weekend. I found a gem in the most affordable one out there: Suave Dry Shampoo Spray. I bought a can of it on Sunday morning before church and Hubs helped me spray it into my hair and I rubbed it in. It worked so well, my hair looked smooth and healthy but not too shiny, and it even made my natural color look prettier than usual. That was a great find.

The testing on my lymph node is expected to take until at least Wednesday to come back. It sounds weird to say but, in this context, we are obviously rooting for something like an infection to be the root cause here, because it's simple and treatable with antibiotics. We are praying and hoping for the best, and I am so grateful to say I'm not even playing the terrible "what if" game anymore.

I will update when we hear more.

I'll wrap up this post with this from Matthew 6. I have it written on my wall to read often:

"First, be concerned about your Father's kingdom and what has His approval. Then, all the things you need will be provided for you. So don't ever worry about tomorrow - after all, tomorrow will worry about itself."