Teresa: Liver transplant
ADPKD I received a Liver Transplant.
On October 3, 2008, I was having an awful bout with nausea and vomiting, lasting 6-8 hours. This had also happened a few days prior. I went in to our family physician's office - he initially thought I had a bad virus or possibly pancreatitis, though the laboratory studies didn't really define it as that. A CT scan was run and an enormous liver was found and I was diagnosed with Polycystic Liver Disease.
I am 5'10" tall and had evidently concealed my "baby" well - thought it to be a little too much chocolate and middle age - ha! I am 49 years old. It was found that the liver was compromising my stomach and intestines, thus a full liquid diet was started, to last for many many months. I was immediately referred to the Integris Baptist Oklahoma Liver Clinic and was evaluated extensively and placed on the UNOS waiting list for a liver transplant as of 1/09/09. My wait began. I had gone from thinking I had a virus to being placed on a waiting list - my world was upside down!
I also have PKD; diagnosed at age 35, very well managed. I have a wonderful Nephrologist on board that I see twice a year. My abdominal swelling was also assumed to be additionally due to very enlarged kidneys - we KNEW they were there. When initially diagnosed with PKD only minimal cysts were noted on my liver. I went through many ups and downs while waiting. My MELD score was quickly raised to 20 - I was number 4, so to be ready.
In August I was told that my wait would probably be at least another year as my kidney levels remained good - Creatinine 1.4 and until it declined I would not gain more MELD points. So I was prepared to wait. I was SO fatigued, my main symptom. I run a little in-home childcare and have done so for 15 years. I care for 5 little ones ages infant - 5 years old. I love what I do and it took everything in me to make their little days bright, and by the end of each day would drop into the bed by 7:30 - 8pm. This was not my usual personality at all!
In the meantime, I found this website and learned about Dr Torres. I submitted all of my information to Dr. Torres including a required MRI study, and I struggled with my insurance company. When I received a call from my nephrologist on Monday, November 23 at 11:30 am that I was not a candidate for a liver resection at the Mayo as my hepatic veins system was compromised with cysts, though a few months prior the right liver sections were mostly cyst free. In the time it took me to find Dr. Torres, my liver cysts had aggressively moved into that region after all.
Needless to say, my tears flowed, I prayed and decided to move forward and be patient - God's timing is perfect. At 10:05pm that very same day, our home phone rang. My Transplant Coordinator from Baptist said that a liver had become available and that I was considered to be the "back-up" patient. I should come right away and prepping would begin as though I were the transplant recipient. The surgeon; Dr Jabbour met with us and was honest enough to tell us that there would be a 95% chance that we would be sent home the next morning, but to please allow the surgery prep just in case.
They would take the "primary recipient' and only if there were problems would I be receiving a liver this time. After several enemas and drinking medication to sterilize my insides and a sterilizing shower, we waited. We were told we might know something by about 5:30 am, that time came and went, then 7:30, then 9:30 then 11:30, no word at all. As we all know in the medical world there is a lot of "hurrying up and waiting" -ha! We waited patiently, sharing the time with our favorite Deacon from our church - fellow shipping in a calming way - really feeling with every ounce of our being that we were soon to go home. At that point, I was a little disappointed, but as I mentioned I knew in my heart that it was in God's timing so I didn't question it at all - a very calm feeling.
Suddenly at 2:30 pm, the room burst into activity. The surgeon hurried in, the other recipient was found to have a heart problem, I would be receiving the liver after all. I was given only 30 minutes to get my sons to the hospital. They are 18 and 24 and we had been told earlier that there would be plenty of time to get them there - not to worry. They hurried me into to the pre-op room, gave me a valium, a medication, and friends and family began arriving in about 5 minute increments.
This was the time frame that I had imagined over and over again and I imagined my waiting to be a terrifying experience. instead God gave me a gift of a peace that is indescribable as each loved one arrived to hug my neck. My children made it in time, along with my little 2 year old granddaughter. I hugged my husband's neck and around the corner they took me - God provided a peace that was indescribable during a previous time I had imagined this wait was going to be completely terrifying.
My surgery took 41/2 hours - all went very well. It had been estimated to take a minimum of 8 hours. My Polycystic Liver ended up weighing 30 pounds.; though with CT scans had estimated its weight to be 18 pounds. It was enormous! I was in the Intensive Care unit for 18 hours and off the ventilator almost immediately, I want to add also that I had the gift of a "guardian angel" in a nurse whom I knew personally, Tracy Ybarra - what a special person she is! They had me standing, walking, and being bathed by 1pm on Wednesday; less than 24 hours after surgery. I was moved to regular room that same day and was home 6 days later. I remember looking down and feeling like I had given birth to triplets - lots of saggy skin where before I had carried a tight drum hard cystic liver filled abdomen. The emotions I felt were so very mixed. I remember being alone in my hospital room for just a short while that Wednesday and it occurred to me that I now have a future. Such a gift we often take for granted, but what joy this thought brought to me. I had energy! - something I hadn't had for many months. I was ready to go home and put up my Christmas tree!! I had a picture with me of my family and as I gazed into their eyes, I thanked God from the deepest part of my heart for a second chance at time and a future with them. Tears roll gently down my face as I type this. Other emotions that I felt were for the other patient that could not receive the liver - how devastating for them; I prayed. I also felt a huge loss for the family of the donor. I too had lost my Father just before Christmas. I prayed for them too. We had been told only that the donor was local and a man in his 50's. We will have an opportunity to send a Thank-you in time thru Life-Share and may get to meet his family someday. I find solace in knowing that his last wishes were carried out - a huge thing, as you see, I had made my list of last wishes and had tucked it away just in case, while waiting for "the call". It is 15 days later - I am doing so well...No signs of rejection! Labs are drawn weekly to monitor this and medications to be adjusted as needed. The anti-rejection meds are a little challenging, but nothing I can't handle. I can handle anything! Have I said this before.. I had the gift of God holding my hand from the moment I rose from my bed on Monday, November 23 - devastating news at 11:30 am to "the call" that same night at 10:05pm to a Liver transplant at 4:00pm on Tuesday, November 24. God was with me every step of the way. I have so much to be Thankful for this holiday season. I just pray that I can glorify my God every step of the way in my new found future. Look out world...Here I come!!!
I am now 41/2 months post-op and finally feeling much better. I had a bout with cytomegalovirus (CMV), then shingles which turned into PHN ,and then an episode of rejection. They have changed my meds around several times and hopefully will find the magic balance. I have had almost 3 whole weeks of feeling really good now!
Hugs - Teresa!
