Wow, things have been crazy, but today really took an interesting turn!
I came down with a very high fever last Saturday night, and the worst pain all over my body. I'm not unfamiliar with these symptoms, but it's been nearly a year or longer since they came around. Sunday I was in bed all day with the same fever, a pain around my liver area, and feeling nauseous. When Monday I awoke with the same issues, we called my hepatologist, and they said to get in the ER immediately.
We grabbed a few things, scooped up our angel Victory, and made a beeline for Seattle. God always has us covered in these situations! It was nearly rush hour, and the worst rain storm we've had in quite some time, but we got Vicky safely to her destination and us to Seattle, almost fifty miles in total, completely safe and no problems.
It ended up that I was dealing with an episode of "cholangitis." It was confirmed through the last MRI/MRCP and liver biopsy that the disease I had that ruined my first liver and caused me to need a transplant, Primary Scleorosing Cholangitis, has returned in my new liver. What is that disease all about you ask? Well, the bile ducts get inflamed, as with other autoimmune diseases (stinkin inflammation!), and scarring and infections and things happen, and sometimes you need a liver transplant because of all the damage. Anyway, this was the first time this "recurring PSC" has caused any issues for me. After tests, and specialists and hospitalists putting their heads together, they decided I was dealing with a blockage ("stricture") or at least severe inflammation in one of my bile ducts, causing an infection, hence the very high fever, chills, nausea, vomiting, and - oh I forgot to mention before, I turned a nasty shade of jaundiced yellow almost overnight.
So I began receiving antibiotics through my IV, and actually Tuesday morning already saw improvement in my lab tests. My bilirubin on arrival at the hospital was 6.9, and Tuesday it was down to 5.something, and Wednesday 4.something... Yeah God!!
But the antibiotics alone aren't what they usually rely on. I went in for an ERCP on Wednesday, expecting that they would go in with a scope down my throat, through the small bowel, and enter the biliary tree and open up the blockage with a balloon, or stent if necessary. It all sounded so simple, and the doctor really expected to get it done with no complications. The whole thing was supposed to be about 45 minutes.
Well, when I awoke from anesthesia, he came in and told us that he was unable to even get into my bile ducts. My anatomy is different because of my transplant; my "hook ups" are a bit wonky, and there was a 90 degree angle that he tried for AN HOUR AND A HALF to get the tools around, and just couldn't. The doctor was so kind, and he looked like he was about to cry, and kind of just ran off after he told us the news. I was so disappointed, because I thought for one thing, "well gee if this is just the first of these episodes, and a person with PSC deals with these ongoing for years, what in the heck are we going to do [next time]?!" And I felt so bad for my poor doctor who wanted to help so badly and tried so hard.
It wasn't such a lighthearted moment as I'm making it out to be here. It was overwhelming. Kind of devastating. You may have seen my Instagram pic my hubby posted....
So fast forward to today. I got to leave the hospital yesterday, and must be on oral antibiotics for ten more days. We're praying that the infection and inflammation dissipate completely, this knawing pain I'm having in my right side goes AWAY, and no more episodes of cholangitis occur. No sweat :)
I follow up with my hepatologist next week, and I suppose we'll address some serious topics. Like, what if this happens again and the infection moves quicker, and they can't get in the bile duct to fix it? They did tell me not to mess around with these kinds of symptoms, because one of these infections can go septic very quickly. meaning your whole body is fighting an infection of the blood (a.k.a. even more, ICU-type serious). There is an option at that point, they said, of going in through the side of my abdomen kind of like an old fashioned liver biopsy, where they can address a stricture and infection that way. Much more invasive and risky, too. Blah. Praying that that is never needed!!!
In the meantime...
We are surrounded by the most incredible people. Have I mentioned that? I think I have, but I can't say it enough. I can't even get into how overwhelmed and nearly numb from complete awe that Hubs and I are feeling today, at God's faithfulness, and the loyalty and get-it-done type of people He's put in our lives.
We've been needing to get to remodeling our living room for quite a while. On the 15th of this month it will be five years since we moved into our house, and since we moved in, we've been battling issue after issue. When we bought it we thought it was, although old, just in need of cosmetic updates, and a lot of love and TLC. But then the issues began.
We first suffered a miscarriage in January 2009, and found mold growing on our bedroom wall and mattress just the same day. (Yeah that was an overwhelming day.) We slept on an air mattress in our living room for two months while my husband tore out that room down to the wall framing, put in insulation and drywall, and made it safe for us to sleep in there. This was in the afternoons every day, and into the late night, as he worked the 3am to 11:30 am shift back then. We got that done, bought a new mattress, and enjoyed our warm, quiet new bedroom sans-oozing-wall paint so much!
Labor Day 2009 thought we'd do a little project in the kitchen - new countertop and cabinets around the sink. No big deal right? Well, he took out the old sink cabinet, and found that the floor was rotten from a previous leak... down to the joists. We then had to dive head first into an unplanned, unexpected, complete gut job of our kitchen, floor joists to ceiling torn out. Everything in the subfloor was rotten and walls were crumbly old plaster and ... short story, that was a two month adventure of microwave cooking and living in even less than our house's 650 square feet offers, because all of our kitchen contents was in our living room as he worked on it. Again during afternoons after working eight hours a day at his full time job.
When I got pregnant with Victory, we knew we needed to redo the second bedroom like we'd done our own, as it didn't have insulation in the walls, and was musty and the plaster walls clearly needed to go. Another project for my awesome hubby and his not-so-free time. When we tore out the wall between the bedroom and the bathroom, there was the creepiest looking, gross, anenome-armed, tendril-waving, nasty-colored mold I ever could've imagined, on the inner side of the bathroom wall. You could see that there had been a water leak from the roof in the past, and they just replaced two square patches of wall, and left the rest. NOT A GOOD IDEA! It was nasty. It freaked me out. So that one bathroom wall had to be replaced at that time, but we couldn't do the bathroom then too, so we had some open holes where it just didn't go in right next to the old plaster and tile, and creatures from the crawl space would come up through the cracks to visit some times. Ick!
Then we finally got to do the bathroom, as the tile was done wrong, outdoor grout was used to do it (a.k.a. water would go right through it!), it was crooked, and it needed some serious help. Also the window was put in right where the water goes when the shower is on... not good! When that remodel was started, the entire outside wall had to be cut out as even the framing under that silly window was rotten. We have a funny picture of one of us (pretending to be) on the toilet waving out to the backyard through the huge five feet by eight feet hole. :)
So, all that's left now is the living room. With all of my health problems, and because of mold issues we've had in the coat closet in there, we figured there were some problems with moisture, and really looked forward to getting that room's icky old plaster torn out, getting the walls insulated, and finally finishing this little house.
Because of all the health issues lately, a few incredible friends of ours teamed up and went in today to start the job, including bringing in a mold inspector. Well, he found that the problem wasn't so minor as a little musty closet. The report? There is mold growing on all of our floor joists under the house. Black mold. For someone with a compromised liver, this is lethal within a very short time once exposed. We cannot live in our home until the floor joists are replaced under the house. This job will cost $20,000 to $25,000.
This is where our incredible friends come back into the picture. They started a fund for us the other day, with the plan to raise enough money to make our house safe for us, and to cover the medical bills that have piled up this past year of craziness. The timing of all of this is nothing short of God-ordered. I look back at all we've been through, and know that if it weren't for the crazy things we've already walked through with this house, and my health, we'd be steam-rolled by this. It is insane, to be told in a matter of hours that you cannot go home because it will kill you. We are nomads. Houseless! Don't get me wrong, I'm emotionally EXHAUSTED just experiencing the magnitude of it all. This crew of faithful friends and neighbors were at our house for ten hours today, packing up our belongings into boxes, getting them to safe places, setting it up for this work to be done. Believing that the work will get done, that God will provide, and we'll be able to get back in our home, and finally, live there being healthy and safe and comfortable.
I know that it will work out. God will provide. When things can't get much worse, and He comes through for you, and this same process happens over and over, and over again, you develop this roll-with-the-punches kind of ability that (especially if you're like me - everything in it's place, a place to call home, home is where you ground yourself) you just have to laugh! God always always always has our best in mind, and when you trust Him, you get to experience the most amazing God-events and acts of humanity and miracles and coming-through-in-the-clutch moments... God is amazing, you guys!
I am grateful to be experiencing the calmest peace right now, knowing that as long as I have Him, and I get to be near my treasures, my dearest loved ones, that is all I need, and the rest is just extra blessing! And for that I say, we may be house-less, but we are not home-less. After all, this world is just our temporary home. There is always something more to learn, more character to develop, more JOY to CHOOSE! Okay, God, I'm game. Keep growing me. I trust You. You will never fail.
P.S. I may be rolling with the punches now but... check back with me in a few weeks. Haha! (I'm just human.) I hope we can be home in time for Christmas. :)
Oh! and the link to the fund is: www.gofundme.com/OperationAgnew
Little house, see you in a while!