Friday, May 15, 2015

Liver Transplant Update

Thought I'd post a quick update on where we stand in the liver transplant process. I'm high on the "A-List" or list of candidates with A Positive or negative type blood. With a liver transplant, the blood type doesn't have to match exactly. I can receive a liver from someone with A Positive blood with my A Negative blood type. I am also high on the list in the state and in our region, which includes Utah, Nevada, Arizona and California. 
So we are in a good position and offers should come any day now.
I feel relatively good and strong as well, so this should serve me well during and after surgery. None of this would be possible without the help that so many of you have provided, both spiritually and temporally. The donations we have received from so many of you have been an invaluable resource to help with the countless prescriptions, tests, and clinical visits we have been through and will continue to go through post transplant. We thank you from the bottom of our hearts!
As I said I am feeling pretty good, all things considered. I get tired easily but am still able to kick the soccer ball around with Megan and Miles occasionally or go for a brief walk down our street. Then I usually need an hour-long nap, but it's worth it! 
I thought I'd include a few photos of my current physical appearance just to give you an idea of what a failing liver can do to your body in its final stages. I don't think they're too graphic (at least I hope not!) but hopefully it gives you an idea of what we're fighting for here. 
Probably the most graphic picture of all - My Face!!! Kidding aside, the yellow hue of my skin and the whites of my eyes (which you can see another example of in the photo below) is caused by the amount of bile that builds up in your body when it can't be properly filtered through the liver ducts. 
My face is not normally this elongated and narrow, but I've lost considerable amounts of weight from my liver disease. I did trim my unibrow recently...don't know if you noticed. 
These two photos, above and below, are what I believe to be the most telling of advanced liver failure, and honestly the most difficult to deal with. With a diseased liver so much is unable to be digested properly and ascites develops, as well as the loss of muscle mass. I've never been a massive person but could always put on good lean muscle fairly easily. When the liver can't properly process proteins and nutrients, your muscles just go to pot, and being unable to gain muscle leads to the incredible fatigue that I experience on a daily basis. Ascites (uh-sigh-tees) is basically the buildup of fluid in the abdominal cavity when, again, the liver can't process it properly through the scarred and damaged bile ducts. It makes you look (and feel...maybe...never experienced it) pregnant without a beautiful little surprise inside. Occasionally when the ascites gets out of hand I have to go in for a procedure called a paracentesis, where you are numbed in an area on the abdomen then stuck with a tube that uses a vacuum type thing to suck out as much fluid as is safely possible. These usually bring instant relief to the back pain caused by carrying around all the fluid weight in the front using a back that has been robbed of any and all muscle, and it's not really too painful of a procedure either, just one of many that are needed to sustain energy and life while waiting to climb the transplant list. 
Side profile. Not much fun, but manageable. 
When the fluid buildup in the abdomen becomes a bit too much to handle, the fluid moves south to the legs and feet. I notice it in the feet and ankles first, usually, then the legs follow. Either way I lose the chicken legs that I once had. I used to not care for my chicken legs, but miss them dearly when this swelling and edema sets in. Lately this swelling has caused me intense pains in my right knee joint, so I guess that's just a bonus feature. Ice and heat help it temporarily, but not much else really helps it. As long as I can get from my bed to the fridge though, I'm ok!
Here's a close up of my swollen toes and right foot. You can see in my nails some weird discoloration that is normal for end-stage liver failure. It doesn't hurt at all, and I have it in my finger nails as you can see in the photo below. It just kind of looks like I slammed my fingers in a car door. I did not do this. Crazy thing, I had this finger nail condition before my second transplant and it seemed that within hours of receiving that second liver the discoloration was gone. Miracles! 
Every transplant experience has been different for us. This time around I developed some strange skin issues like the small blisters you see on my hand. Again you can see the discolored finger nails. Occasionally when the ascites and edema gets super bad, it extends up to my hands and face. This is not the case here. I have had to go through several infusions for various deficiencies that my liver has caused. I go in for a boost of Magnesium or Potassium when I'm low in those areas. I receive albumin and diuretic infusions when my edema gets out of hand. Sometimes I'm out to receive infusions 2-3 times per week, and a session ranges anywhere from 2-4, or sometimes 6 hours. I don't usually have any issues with these infusions, but the other day I was receiving an infusion of Albumin, and halfway through (without my nurse or myself noticing) the IV needle shifted somehow and the Albumin broke through the blood vein and infiltrated the space around in my arm. The photo below shows quite a bit of improvement if you can beleive it, and so now my left forearm looks like Popeye's forearm. I just wish it had its strength...sure would help Megan out a lot since she has been working off the chain organizing our house and garage, as well as building a shed with in our yard with her mom. 
Bad bruising too. Not painful, just a pain. 
This is what my arms typically look like. From two blood draws per week and the IV infusions, my arms rarely get a rest from needles all working together to keep me as strong as possible and to monitor my overall health. 
I didn't want to show these pictures just to show off my beautiful bod, nor to boast and say, "you think you got problems? Check this out." I just thought some of you might find it interesting, educational, or just some way to gain a better understanding of what liver disease, or any physical disease, can do to the human body. While the photos may not show it, I'm doing well but also am ready for transplant. Again I thank all of you for your prayers, your thoughts, your donations, and your help. It saves our lives, very literally as you can see from the photos above. 
I would do a horrible injustice not to thank my Megan for the wife and caretaker she is on a daily (and nightly) basis. She is the strongest woman I know, and the greatest caretaker. Having just passed Mother's Day, I hope she knows how much she means to me. We try to find a good balance in our marriage and family of fun activities and rest. Rest comes in many forms for a caretaker. It may be a nap or a quiet movie night. It may be an escape from the scene of the illness. That's why we try not to focus on the what if's or what will be's of my disease. I love the days I am with her, but I also love almost as much, if not more at times, the days when I feel good enough to take the reigns of the house. When I feel strong enough to take care of Miles and even get a few things done around the house so that Megan can go get a massage or use the Snowbird pass her dad won for her on a beautiful fresh powder day, I couldn't be happier. As the dedicated caretaker that she is, she deserves more than this. There have even been days when someone in our amazing family or neighborhood has been able to watch Miles while I spend a day at the hospital getting infusions and Megan takes a few hours to get up and ski or bike (especially since you had to jump on every chance you got to ski this winter) and Megan had come back refreshed and renewed with a big smile on her face and fun stories to tell. These moments bring me the greatest joy. Some may think she should constantly be by my side, but I know that mental and emotional health are equally important as our physical health. She is such a gift to Miles and me. I am so blessed and wish her a belated Happy Mother's Day (I didn't fiorget it on Sunday, she just deserves another one) because she is my greatest blessing, and I thank the Lord with tearful joy for her every day. 
We will keep you all posted to the best of our ability here as we hopefully near a successful third liver transplant.
Peace and love for now. 

1 comment:

  1. Happy Birthday Alec! (Yesterday) - I will always remember it is on Flag Day.

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