Liver Update

 My liver saga seems to never have an end.  I thought that after the transplant everything would go back to normal and I could go on living my life as it was prior to transplant.  As the saying goes:  Life is what happens while you are making other plans...  

It turns out that my hepatic artery developed a thrombus about 6 weeks after surgery. This a known complication and happens about 1-5% of the time.  I remember having a terrible backache for about 4 weeks.  I am not normally a back pain person and I discussed it with the NP that was overseeing my post operative care.  She assured me that it was likely just regular back pain and I should go see my regular MD if it did not improve with tylenol.  I did sustain a short fall while rock climbing and decided that was likely the cause.  By the time I/my doctors realized that the pain was actually my liver dying it was too late to reverse the clot.  So, after many studies and hospitalizations the conclusion is that my biliary tree is necrotic and the bile that every liver constantly produces is leaking outside of my liver and causing me to be so itchy that it was impossible to think about anything else.  I finally went to interventional radiology where a biliary drain was placed.  This has resolved the itching but the definitive treatment is a new liver.  This time, a living donor won't work due to the parts that I require will need to be left with the living donor.  So, I am back on the transplant list.  Unfortunately, the part of my liver that is not fed by the hepatic artery is getting great blood flow and my hepatocytes are happy cells doing their liver thing.  This means that I am not sick enough to be high on the transplant list and since my transplanted liver is perfectly healthy, I likely will not develop disease severe enough to move me up the list for many months/years.  So, now I have an external biliary drain that I am apparently going to have to live with until I am re-transplanted.  

I cried and cried at first but am slowly learning how to deal with it all.  Since the drain is open to the outside and leads to a sterile place inside my body I am vulnerable to infections.  This has happened twice so far and has required hospitalization and IV antibiotics.  After the third event I will qualify for exceptions points on the transplant list that will move me up the list considerably but not to the top.  Once I realized that it may be years until I receive another new liver, I decided to live my life as fully as I can right now rather that stay in a waiting pattern  I actually feel wonderful, health wise, back to my normal self.  The drain is sutured into place and sometimes the sutures pull but that is the only pain.  I am able to cap off the drain and wrap it up with an ace wrap for rock climbing and other sports where I am afraid of it getting pulled out.  Swimming has been challenging.  I was told never, under any circumstances, to go swimming or sit in a hot tub.  I was compliant for a while but many of my summer activities include swimming, ie kayaking, jumping of the rocks into the river at the cabin, neighborhood pool with the kids.  Not to mention our vacations are often beach oriented.  We had to cancel a trip to Hawaii with my brother's family that I was really excited about.  Finally, I decided that this was unreasonable and something had to change.  I raided the nurses's supplies and found some large tegaderms (flexible tape that covers IVs to make them water tight).  After a few tries I have figured out how to cap off the drain and seal it up with a few tegaderms.  It won't hold for a long time submerged in water, but it seemed to work well with jumping in the river and swimming to the bank a few times.  I am still experimenting but I hope to come up with something that will allow snorkeling.  I am afraid that scuba diving might be out of the question but I LOVE snorkeling so if I can work that out, I will be content. 

Tom and the rest of the family have been so supportive.  I was initially embarrassed about the drain as it is ugly and annoying but we have all become used to seeing it around and they are all patient when it takes me a little longer to get dressed.  I had a wonderful nurse during one of my hospitalizations who helped me with some ideas about how to manage the drain when I hike or bike.  I have several cargo shorts and pants where I have made an internal buttonhole.  (Learning to sew is now paying off!) I can put the drain bag into the pocket and then run the tubing through the buttonhole and up to the drain.  This works beautifully.  Thank goodness I am no longer in my fashionista days and don't really care if cargo clothing is out of style.  Anyway, just trying to turn lemons into lemonade.  Studies seem to show that the average time on the wait list for patients like me is about 1 year.  We will see.