I borrowed this from one the support groups I am in. I think it will help us understand what I'm facing in both short and long term. When I open up about my fears, doubts and decisions, this will give you some context.
Hi there! First of all, I want to express how grateful I am for this group. I don’t post a whole lot (5 kids, full time nurse in ICU and at home for hubby, yadda, yadda) but I read all the posts and they are all so wonderful; good and bad. Second, I absolutely don’t want this post to be viewed as bragging or that we are more fortunate than others. I do feel that it is so important, as a friend had pointed out, that we share our stories. So many of these posts have scared me to death pre-transplant, worrying that the side effects and complications that many of you have experienced would befall my husband as well. I was scared that he would be a completely different person post-transplant. Thankfully, he is more determined and driven than ever before to lead a healthy life.
Here is our story:
Tr—— is a vice principal at a local elementary school. I’m an ICU nurse. We have 5 kids ranging from ages 10 to 21. 😳 We have 2 dogs, 3 cats and way too many rabbits (our daughter shows them around the Midwest.) Back in February 2018, he was experiencing some abdominal pain. At the point he could no longer be stubborn about it (ladies, I know you know what I mean 😜) he went to the ER. Upon getting a CT scan, we were told that he needed his gallbladder removed… “Oh, an PS: YOU HAVE POLYCYSTIC ['many cysts'] LIVER AND KIDNEYS!” Ugh… being a nurse, I knew this wasn’t good. And, his mother has PLD/PKD. She had a transplant in 2000 (Her liver was 50lbs. when removed… HOLY MOLY! 🤭) So, we had an idea of what we were in for. So, he had his gallbladder removed. When the surgeon came out to talk to me after the surgery, he showed me photos they had taken and his liver looked like a bag of marbles! He said Tr—— needed to start seeing a hepatologist and definitely one with transplant capabilities. Before he was out of PACU, I had already made him an appointment with O— Hepatology! (I’m not one to procrastinate. If it needs done, step aside and let me get it done! 🤷🏻♀️)
Things were going well for a while. He recovered nicely and without complications from his cholecystectomy [gall bladder removal] and we were going about life as usual. He would occasionally have a pain here and there, but it wasn’t anything crazy. His liver and kidney function was perfect (and never did move out of normal range). Fast forward to June 2020… His pains had been increasing in frequency. He was getting short of breath VERY easily (walking in Target following me around looking at EVERYTHING was no longer happening 😢). He was nauseous at least once a day and he was only able to eat about 1 cup of food in one sitting due to intrinsic body compression. We started discussing the transplant option with his hepatologist at this time. In late July, he began pre-transplant testing. He had Xrays, CT scans, an endoscopy, SO MUCH blood work, financial counselor, social worker, and pharmacist meetings, pulmonary function tests and a transplant education session. [DKL had this done in Jan./21] December 1, 2020, he was officially put on the transplant list with a MELD score of 8 [DKL's MELD score at time of evaluation was "7" The MELD is a scale 1-40 used to track how 'ready/imperative' you are for the next liver to come in.]. Our transplant coordinator applied for exception points due to the impact of his symptoms on his quality of life. His exception points were granted and his MELD score was increased to 23.
On December 8, 2020, Trevin got the first call for a liver! I thought he was kidding when he said he got the call. It was a hep C positive liver, but we knew the risks and the success of the hep C treatment, so we agreed. [You can't control who happens to die to supply the next liver. They might be sick with who knows what: Hepatitis, AIDS, Cancer, anything! The patient has to decide if the liver is sicker than I am, and willing to take the 2ndary risks.] We went to the hospital and the waiting game began. Eventually, that evening, we were told that the donor liver wasn’t viable. 😩 Back home we went.
[Many factors determine if a liver is 'right' for the patient (point A) or 'viable' for anyone (point B). Once a person - who has made know they are donating - dies, there is only a few hours' time to test the organ: diseases (as above), it's health to survive the transplant, it's tissue/blood type, whether the donor's death may have caused injury to the organ, etc.]
Our second call came on December 23rd at 10:30 pm. I was super excited! It was gonna be a 🎄Christmas miracle… what a cool Christmas gift… A Christmas we would never forget (all the cliché things we could think of), plus how perfect that I had 8 days off! We went in again and waited. This time, the weather played a part in the delay of procurement of the donor liver. He was in the hospital until Christmas night. I was back and forth with the 2 youngest kids. Tr—— insisted that no matter what, he wanted me to be home with the kids so they could have a traditional Christmas morning opening gifts. We facetimed with him so he could see them open their gifts. Afterward, I drove the 45 min in the snow to be with him. That night, we were told that this liver, too, wasn’t viable. Back home we went. I’d be lying if I said I wasn’t hopeful this transplant happened in 2020 since we already met our deductible 💸. Our third call was on January 5th. At this point, we were like, “Eh, okie dokie, let’s head in!” Same thing as the last three times: not a viable liver!
Let’s keep in mind, each time we go in, he has to have an IV inserted, chest x-ray, about 12 tubes of blood drawn and a CHG bath. Now, you all may disagree with us on this, but CHG bath time was our bonding time🥰! Nothing like wiping your hubby down with lukewarm wipes that are a tad sticky and smell like disinfectant to keep the romance alive 😍. [I don't think this will be required for Care Team Duty! Could be ~awkward~] I wondered how many more times we could go through this. Don’t get me wrong, we would keep doing it until we got the perfect liver, but man, it was taking an emotional toll.
The fourth call was at 1:30 am on January 8th. Tr—— rolled over hard in bed to answer the phone in a hurry. And, God love him for putting up with me, I yelled at him and said, “WHAT ARE YOU DOING!?!?!” (Don’t mess with me and my sleep! 😴) He said, “It’s O— calling!” Then I felt bad. I had to work in the morning and we had been through this before; I was sure he would be back home in the afternoon. I said. “Ok well, call your brother and he can take you. I’m going back to bed so I can go to work in the morning.” So, that’s what he did. That afternoon, I left work a little early and went to the hospital to be with him. After all, of course they would be coming in soon to tell us the bad news about this not being the one either.
But, while I was there, things felt different. We saw a social worker this time and we never had before. Registration talked to us and they hadn’t before. He was put on the heart monitor this time when he wasn’t any of the other times. We were hopeful, but skeptical. Another thing I want to mention is that this visit, we had the same nurse we did on the first visit. 👩🏻⚕️J— was wonderful. It was kind of cool, like, “Hey old friend!” So, J— walks in at 6pm and says in a celebratory fashion, “YOU’RE GETTIN’ A LIVER!”
I immediately started bawling 😭 and Tr——, per the usual, was cool and calm😎. They took him down and they made the first cut at 7:38pm. There was a communication mix up and I got ZERO updates throughout surgery 🤬. I finally called the main hospital number and asked to speak with the surgery desk at 2:48am. I spoke to a nurse in his OR and she said he did amazing and they were closing up now. Whew! They also told me that his liver was 20lbs when they removed it! I was able to see him for a few minutes in the ICU before leaving to head home. I slept for 1 ½ hours then got up and headed back into the hospital. Due to COVID, I was only allowed to visit the day of surgery and the day after. I asked his nurse if, since technically his surgery didn’t end until the 9th, if that could be the day of surgery (so I would have an extra day with him) she said sure!
He had 82 staples and 2 drains, a chest tube *and a partridge in a pear tree. He had developed a pneumothorax [A pneumothorax (collapsed lung) occurs when air leaks into the space between your lung and chest wall. This air pushes on the outside of your lung and makes it collapse.] which is why he needed a chest tube. He also developed a mucus plug causing his Oxygen saturation to drop and had to have a bronchoscopy [a snake-like scope is put down the throat /airway]. We were told beforehand that he would most likely be extubated the day after surgery, only in ICU one day then transferred to the transplant floor. Well, expect the unexpected with us! 🙄 After 5 days, he was extubated, and transferred to the transplant floor.
He was doing phenomenal in the hospital. He was weak, but making progress. He was discharged after 10 days in the hospital. He was given an entire bag of meds, a scale, a BP cuff, thermometer and a pill organizer. I bought him a shower chair [yay, I already have one!] so he didn’t have to stand in the shower and risk falling. He only used it about 2 weeks, but it made all the difference.
About a week and a half after being home, he developed an extensive blood clot in his left leg. He said the pain from his clot was worse than anything associated with his transplant. He was put on Eliquis twice a day and it is no longer causing him pain. So far, he has lost a total of 46lbs. His belly is so much smaller. He used to look like he had a huge beer belly, even though we don’t drink alcohol. He can breathe so much better now. He is no longer on any of his Blood Pressure meds; his blood pressure had been awesome! He has been walking more and more and guess who can Target 🎯shop longer and longer with their wife?!?!?! 👏🏻 He has a buddy who incidentally had a heart transplant in December so they are mall walking pals now. 🚶🏻♂️
His staples were removed after a month and I have been using Griffin tattoo salve on his scar to keep it soft and healing nicely. He amazes me every day. [As of Feb 28, 2021 - almost 2 months] He still is not allowed to drive, so I’m driving Miss Daisy around! 🚕 His brother comes and stays with him for some bro time while I am at work. He still drinks 2 premier protein shakes a day to build muscle. Me being “the boss,” as he affectionately refers to me, I am the one who makes sure his pill 💊 organizers are filled. It also gives me peace of mind. All of his lab work is looking amazing. He is working so hard on his recovery and I am so happy with all of his progress. Little by little he is making great strides.
I want you all to know that there are bumps in the road that happen, but don’t be afraid. Prepare for the complications and educate yourself but don’t let it freak you out. [yeah, ok, I'm freaking out a little…] Reach out to your friends, family, transplant team and us here on the page. Make lists, stay organized, and do what you can to take care of yourself and stay sane. 🤗 We made a Facebook page to keep our friends and family informed and up to date. [Way ahead on this one!] It is super helpful so that the patient and caregiver don’t have a million texts and phone calls to make. I kept it updated every day and sometimes a few times a day. It was also a great way for Tr—— to look back and see what he missed while sedated and intubated. Everyone left him well wishes that he could look back and read the whole way through.
Good luck 🍀 to you all and thank you from the bottom of our hearts!