A fall and a bump on the head.

Sadie's Kennel

One of the challenges that Lee and I face every day if his poor balance. With the encephalopathy  balance has been a big issue for Lee, he has been working with Physical therapy for several months but with his liver failure there is also muscle wasting that occurs.  Lee has fallen several time and had been lucky to not be hurt up until he fell and hit his head hard enough to leave a big goose egg. 
On January 10th while I was at work I got a call from Lee telling me he fell hard and hit Sadie's kennel, luckily she does not sleep in her kennel we use it when we are traveling,  have a lot of company or need to be going in and out of the house a lot.  I got home and found this, needless to say Sadie will have to use her travel kennel in the house.

Lee's Hematoma a couple hours later

On Valentines day I was getting ready to head to work and Lee was getting out of the bath (he likes to wait until I am awake to get in the bath) I was in fixing my hair when I heard a big crash, I went running into the other room to find Lee on the floor, this scared me to the bone.  Lee told me his arm was numb and that his head hurt really bad, I called work and told them what was happening, I then tool Lee to the Emergency room where they did a CT of his head and found that everything was stable and he just had a large hematoma on his head.  The numbness in his arm had resolved and the doctor felt that he hit it and the nerve was firing. Thank goodness that there was no bleeding in his brain.  In patients with liver failure the INR/ prothrombin time (PT)is usually elevated. If there is serious liver disease and cirrhosis, the liver may not produce the normal amount of proteins and then the blood is not able to clot normally. The INR is one of the labs that are used to calculate the MELD score.  This is the reason I was so worried about Lee hitting his head so hard.  

The plan going forward, Lee has to bath only when I am home and can be there to help.  We got him a handle that clamps onto the tub so that he can hang on when getting in and out. We also got Lee a walker he complained at first and neither one of us wanted to admit that he needed a walker, they are for old people. Lee has not fallen since using the walker, except when he has walked away from it. This will be an ongoing problem and a challenge that we will face everyday.  

Lots to think about and big decisions to make.

After Lee's listing appointment and even a little while before we had talked about moving closer to the hospital in Murray.  During the transplant orientation we learned that after transplant we will have to stay within an hours drive to Murray for up to three months and after that depending on how well Lee does he will have to be seen in the clinic weekly and some times more often depending on labs and his needs.  I know in my heart that moving is the best thing  we will be closer to the liver team and I feel we will have more family support when they only have to travel a couple of hours and not 7 hours to be with us.  I know that leaving southern Utah will be hard I will miss the weather, my job and work family and all the friends that I have made along the way.  I am ready for a new adventure, but where to start.  I don't know if I should find a house first or a job first, so many things to think about.  I currently work for a Intermountain heathcare hospital so I feel like finding a job may be the easy part, I hope to transfer to a similar type unit but then again it may be fun to branch out and try something new.  I know I have never liked pediatrics or Labor and Delivery so that is one area I will not bee looking in, I have always liked trauma patients, so many details and seeing them put back together has always amazed me.  I was maybe thing shock trauma ICU but I still have to look for opening and apply so that will be happening soon enough.  The next challenge will be finding a house.  I would like it to be a house and not an apartment we have one dog our cute Sadie. 

With Sadie being a rescue we are not really sure of her exact breed we kind feel like she could be American bull dog or Pitt with who knows what. Sadie loves people and she loves my friends little poodle but she doesn't like all dogs, but I think in time and socializing she would do great.  So a house with at least a little yard would he awesome.  I have been looking and I think I have been quite spoiled with my rent here in Hurricane, It will be at least $300 more a month to rent a place in Salt Lake county.  So any of my Northern Utah friends that hear of anything please let me know we are planning the last week of March to head up and really start looking.  The other challenge with housing is paying all the deposits and first months rent while still paying rent here so that I can get moved out. 

Finally received a phone call

On January the 15th we received a phone call, We were told that Lee has been approved for transplant.  We had so many mixed emotions from relived, scared, excited and worried.  The next step was to meet with the liver team again for the listing process.  We made our way back to Murray on January the 24th. Lee's brother who also has liver failure met us for this appointment. There was another learning session that explained the listing process in a little more detail.  Lee will need to have a CT every 6 months because liver failure patients are prone to develop liver cancer that would mean that he would move up the list rapidly.  Labs to calculate the MELD score will be done every 3 months and he will need to be seen in the clinic every 6 month until his MELD score in higher.  An EGD will need to be done every year to monitor for esophageal varices. During this visit we met with Dr. Gilroy who is the head of the Transplant team.  He reviewed Lees chart and made a couple of medications changes, we also learned that Lee had several vitamin deficiencies, Vitamins A, D, E, and zinc so we had to add those supplements to Lee's daily medications.    More labs were drawn and Lee's MELD score was updated to be 17.  Dr. Gilroy told us about a study that he was preforming containing information about spouses of liver failure patients, how lifestyle choices are correlated with liver failure.   He sent me for a liver density test this shows how much fat and fibrosis the liver has, I have a very fatty liver with mild fibrosis from that fatty liver.  I was told that best treatment for this was follow a Mediterranean diet and drink 2 cups of coffee a day. 

This diet will be a challenge for me I was raised on meat and potatoes, those habits are hard to break along with my very large sweet tooth and dislike for fish.   I have also never been a fan of coffee, I don't even really like the smell, so that has been a challenge I am starting with twice a week drinking coffee and the other days drinking hot herbal tea that has good antioxidants but not as many as coffee.  Here is a website that explains a little more about coffee and the liver.   https://www.medicalnewstoday.com/articles/320089.php?sr

New Transplant Patient orientation

December 14th finally came we made our trip to Murray which is a 280 mile 4 hour drive trip.  We were fortunate enough to be there for one of Lee's moms appointments and got to go out to lunch with a couple of his sisters, his mom and his brother before the start of our orientation day with the liver team.  During the orientation day we learned tons of new things.  I think the most amazing thing we learned about was the program through Intermountain Healthcare.  They transplanted the first Hepatitis C liver into a patient without Hepatitis, then gave the patient the medications to cure Hepatitis C.  They were also the leading researchers for the cure of Hepatitis C.  The program through IMC is leading the nation in transplanting Hepatitis livers, they are receiving livers from all over the united states because of this. Learning about the surgery itself was quite interesting to me being a nurse I wanted to know all the details if how they actually cross match the livers and how they sustain blood flow and all risk factors big and small.   It was interesting to know that livers are not as sensitive as other organs to be matched, for example kidneys have to have immune compatibility, for the liver the liver has to have the same blood type and body size.  If you are wondering why body size I was wondering that to, Dr. Fujita the transplant surgeon explained that livers are proportioned to the body size, so Lee being 5' 6" and about 190 pounds, if the donor was 6'10" and 300 pounds that liver would not fit into Lee's smaller frame, but if the donor was 5' and 120 that liver could go to Lee and it will amazingly grow to fit his frame.  There were several other interesting facts living in Utah we belong to a region for the allocation of organs through UNOS The United Network for Organ Sharing unos.org is their website it if full of great information.  Our UNOS region consist of California, Nevada, Arizona, New Mexico and Utah. 

If you are interested in learning about the transplant numbers here is the UNOS statistics for 2017 for our region.  https://optn.transplant.hrsa.gov/members/regions/region-5/ It looks like about half the patients on the wait list get transplanted a year.  IMC transplanted 271 patients in 2017.  That is more that one a day excluding weekends.  We also learned more about the MELD score and how it ranks you for transplant.  The score starts at 15 and the top number is 40.  Lee was a 16 at this point.  They look at listing at 15 depending on how symptomatic the patient is.   Lee was symptomatic at this point with encephalopathy and portal Hypertension.  The patients in the mid to high 30's to 40 are very sick and are commonly in the hospital or ICU it is life of death.  The patients in the mid to higher 20's are the patients that commonly receive the higher risk or Hepatitis livers.  After much discussions with Dr. Fujita and between Lee and myself he decided that if a high risk liver was offered to him he would take it so that he could get better sooner then later.  We also learned many more interesting facts about health in general.  Dr.Fujita was amazing to spend time with us and talk about general health and liver health.  One interesting thing that he did was look at Lee's palms he told up that it is common for patients with liver problems to have a pale white area in the middle of their palms and more pink to red on the outer palm. 

We also learned that the little red spidery areas on Lee's chest and back were a sign of liver disease.

(https://www.slideshare.net/karangagneja/liver-failure-31824393) This is an awesome slide show that I found containing the previous two images and a load of information about liver failure. 
The next interesting fact that we found out was about heart health, of course transplant patients have to have a good heart.  Lee does have an earlobe crease.

When we left the orientation Lee was not yet listed, there was a list of things that needed to be done before he would be evaluated for listing.  Here is the list of things to be done and the dates they were done. ( I wanted to get them all done before the end of the year.
1. Labs 22 tube to be specific done December 15th
2. See the podiatrist December 19th
3. Echo cardiogram December 19th
4. 6 minute walk test December 21st
5. Dermatologist December 21st
6. DEXA scan December 28th
7. Liver ultrasound December 29th
8. Cardiac stress test December 29th
Boy oh boy was that a crazy couple of weeks all that plus working my 3-12 hour shifts 3 Physical therapy appointments and Christmas.  Now that waiting game begins, after all the test are done and sent off to the doctors they take Lee's entire profile to and interdisciplinary meeting and determine if he is a good candidate for a liver transplant.  This is that part that will make me nuts, just sitting and waiting.