Our heart wrenching trip to HELL!

Yesterday had to be the most heart wrenching day I think I have ever had. It was a hard, hard, hard HARD day for the Parr-Lawyer Family.

HG received a call in the early afternoon to come to the hospital on standby for a liver. There was a man ahead of him but if something didn't work...he would get the liver. As you can imagine we were all cautiously optimistic but prepared for it not to happen. That my friends is the way the "Who Wants A Liver" game works.

HG got to the hospital and patiently waited when we finally got word that the liver was his. He was going to get his transplant and we were about to have our miracle! As you can imagine we immediately got on our knees for about the 6th time that day to thank our Heavenly Father for this beautiful gift. I received a call from HG right before the Dr. came to get him to prep for surgery. Just to say our I love you's since one can never be too safe in this type of situation. Then, the Dr. took HG to the elevator to go prepare for surgery when they received a call and the Dr. took HG back to his room. He was told they were on "hold".

After an hour or more of being "on hold" they came in to tell us that the Dr. had made a terrible mistake. That the person ahead of him actually hadn't even been tested yet and that they were still going to try to give the liver to the other recipient. Yes....you read that right (gasping here is appropriate). I understand that mistakes happen but this...just not ok. I am pretty sure that I speak for everyone when I tell you that our world shattered into a thousand little pieces. There was still a chance he would get the liver but again we needed to wait. UGH!! Have I told you how much I hate waiting?

I can't tell you what it was like for anyone else....only me. I can't even pretend to imagine what HG has been through and what went through his mind. Pretty sure he was like us all....we felt like we had literally gone on a heart wrenching trip to HELL.  You see....this liver thing isn't as easy as it might seem. We are very aware that someone has to die in order for my brother to live.  Not only that...there are many...I am talking thousands that will never get their miracle....the liver will NEVER come...and their families will be left missing them and picking up the pieces of their shattered world.  With that being said, my prayer from the moment we received the call was that the family who just lost someone would feel the comfort and peace that can only come from our Heavenly Father, it was for the person who didn't receive a liver yesterday and for their family...that no matter who it was we would be able to accept in our hearts and our mind that it was the Lords will. I prayed that another liver would become available soon for the one who didn't receive a liver and that HG would have the strength and courage to carry on no matter what. I prayed that everyone in my family would have understanding and be filled with love no matter what the outcome. I also prayed that I personally would be able to accept whatever happened with grace and with the knowledge that I have a Father in Heaven who knows me and HG and who loves us and will never leave us alone.

I can tell you that our Father in Heaven heard and answered that prayer. All that I asked for has been granted except for another liver becoming available and I am hopeful there is still time for that to happen. I do believe in miracles. Now, I am not going to lie, there were moments of pure ANGER. I was so fearful that my anger at the Dr. for the mistake he made would consume me that I immediately dropped to my knees and prayed for him. That if he felt bad he would be comforted and that this would never happen to anyone EVER AGAIN. I even cried myself to sleep after we received the final decision and HG was sent home but I can tell you that it wasn't just tears for my brother but it was tears for the family who have their loved one around for another day.

You see early in the evening the Lord blessed us with understanding and peace to our hearts and soul as we learned a little about the other recipient. The reason HG was on standby was because the other recipient was so ill that they didn't know if he would live through the transplant. Those on the very top of the transplant list are usually expected to last only a week or so without a new liver. Oh the joy his family must have experienced at the chance they now have at life. I continue to pray that their body accepts the liver and they have a long happy life.

I am so AMAZED by HG and his strength. Last night he cried when heard of the other persons situation and while he was frustrated with the Dr..... he was happy for the other person. Even today when I asked him how he was doing he said that he was tired but happy that everything worked out for the other guy. There was no way he could wish him death so that he could walk away with a new liver.

The hardest part about this journey is the emotional rollercoaster. Sometimes the ups and downs feel like they are going to kill me. Literally. Yesterday I thought my heart was going to jump out of my chest and I threw up when they sent HG home. It rips my heart out to watch my parents as they stand by...powerless and full of love for their son. The son they would move heaven and earth to save. No parent should have to watch that and those that have my heart aches for you. This isn't an easy journey. I prefer it was over and HG was happy and healthy but that isn't the case. I have learned that so much of life is out of our control and all we have power over is ourselves and our choices. I can chose to get discouraged and angry or I can chose to believe in something bigger and better and you know what? I CHOOSE to believe! I choose believe in our Almighty GOD, our loving Heavenly Father. I choose to believe that there is still good in the world. I choose to believe that miracles really do happen. I choose to believe that god is aware of HG and my families every need and he will never leave us alone. I choose to believe that HG will get a new liver and live and I choose to believe that losing just isn't an option.

T.I.P.S. anyone?

Liver disease isn't something that you hear about often but it is more common than you think. This disease is hard. Sometimes I don't think people realize just how serious it is. I know I didn't. There is no doubt. HG is VERY sick. Without a new liver...he...will...die. There is no way around it. Statistics that he will live long enough to get his new liver aren't so great either but right now...for us....losing is not an option!!! It just isn't.

So can I just say that liver disease...well...it just plain SUCKS! What a horrible, debilitating and sad disease. The worst part about it? Someone has to die so that my brother can live. This is the thought that has consumed my mind the last few weeks. How fitting seeing as this week is Easter. Our Savior died so that we could live again. I am so grateful for this knowledge.  It helps me to put things into perspective but it sure doesn't make it any easier. 

It has been a week of ups and downs for HG. It is so hard for me to imagine how he must feel. Always feeling bad, always being in pain, always feeling tired, always fighting for your L.I.F.E.  EVERY....   MINUTE....   OF....   EVERY....   DAY!!!

Today HG is having a procedure done called T.I.P.S. It will hopefully help so that he won't need to go into the hospital several times a week for the paracentesis. I have provided a video so if any of you care to see what it is they are going to do.  The basics of it are that they will put a shunt in his portal vein that goes to the liver to release pressure on varicose veins that are causing this fluid to build up in his abdomen area. Right now he is at the hospital preparing for the surgery. It is a mildly invasive surgery but when you are dealing with someone in as poor of shape as HG is in....well....it can be very serious so prayers would be appreciated.

This journey that we are traveling on with HG is not one I would have chosen for him but it really doesn't matter because it is the one we are on and I would do it time and time again if it meant having here on earth...alive and well...with us...his family. So do me a favor. This weekend as you are spending time with your families and celebrating Easter. Please....hug your loved ones a little tighter, be a little more patient and if you find time...say a prayer for HG that he will continue to have the strength to fight because remember.....Losing is not an option.

Happy Easter Everyone!

The Good, The Bad and The Ugly

Where do I even begin? It feels as if my heart and my head are about to explode; thoughts running rampant as I try and grasp the new reality for my brother, HG (Dan). Its ironic how quickly things can change------in the blink of an eye what was------somehow------ no longer is. 

This last year has been a challenging one for the Parr Family. I know everyone has challenges and many are greater than ours but for us this last year has been like a window shattering into a thousand little pieces and each time we have gone to pick up the glass---another piece shatters---leaving us with so many emotions it is hard to put into words.

Along with HG’s diagnosis of Primary Biliary Cirrhosis (PBC) we have grieved the loss of my grandfather, aunt, cousin, and several friends since Christmas. It has personally left me with a feeling that death is standing near my heart and at the door waiting to greet someone new and I am determined it WILL NOT be HG!!! I know this may sound silly. Most of you that know me know of my faith. My belief that there is a merciful and loving Heavenly Father that is aware of my family and our needs. I believe in life after death and I believe that families are eternal BUT that doesn’t make any of THIS easier. I repeat……THAT doesn’t make any of THIS any easier.

When people hear the word cirrhosis of the liver they automatically think that alcohol is the only cause. This just isn’t true. The Dr. said that HG has a liver of a 70-80 year old man who would have had to been an alcoholic from age 10 that drank from morning till night to cause the damage that is done to his liver.  PBC (primary biliary cirrhosis) is a type of autoimmune disorder. Research shows that it is genetic which makes sense to us because my grandmother (mother’s side) is currently suffering with cirrhosis of the liver and has never had a taste of alcohol in her life. They say that PBC can be easy to detect but that just wasn’t the case for us. In fact my research has shown the opposite so the jury is still out on that one. If you want to know more about PBC here is a link to the Liver Foundation that will tell you everything you ever did and didn’t want to know about PBC. 

http://www.liverfoundation.org/abouttheliver/info/pbc/

Many of you have asked….Now what? That is a good and hard question to answer. For HG…it isn’t and hasn’t been fun. Life has changed drastically for him and his quality of life right now is heartbreaking to watch. Our hands are tied as we sit and watch and wait and wait and wait AND WAIT!!! So I will give you a quick run down of what is happening, as there is too much information to give at one.

First, Dan is completely unable to work. He has a difficult time functioning and doing the basics. Things that had once been easy like driving a car or making dinner are now difficult and overwhelming. Some days they are just impossible. Why? Some of the symptoms that PBC causes are fatigue, jaundice, and dry eyes and mouth. It also causes mental confusion due to the buildup of toxins that are ordinarily removed by the liver. These are just a few of the symptoms that HG suffers from. Another complication is Portal hypertension. In medical terms….The portal vein carries blood from the stomach, intestines, spleen, gallbladder, and pancreas to the liver. In cirrhosis, scar tissue partially blocks the normal flow of blood, which increases the pressure in the portal vein. This condition is called portal hypertension. This is a common complication of cirrhosis but has led to edema-which is swelling due to a buildup of fluid in his abdomen, particularly. As you can imagine this is very painful and uncomfortable. HG goes in 2x’s a week for a Paracentesis where they drain the fluid from his abdomen. Super fun (NOT!!!)

Second, now is a time for testing and waiting. There is no doubt that HG needs a new liver. It is clear without one he will die. He is in the process of getting on the transplant list but in order for that to happen there are a series of tests that must be done. Some of you may not realize but livers are in high demand and there is a HUGE shortage so not just anyone gets on the list. There are specific requirements one must meet before getting their name on list. Too many to list but they include blood work and a mental evaluation. Dr’s are confident he will be on list by end of summer and then the real waiting begins. Only 50% of people that need a liver will receive one in time and it looks like the average waiting time is about 3 years (depending on your MELD score..again too much info for now). Many factors play into this and I will go into more detail at a later time.

Believe it or not….this is a quick run down of what is going on and some of what lies ahead. There is much more to tell and that is why I decided to blog. I am hopeful that being able to get my thoughts down on paper will allow me to get some of that sleep that has evaded me. Especially lately as the details of all that is involved in a liver transplant consume my mind. My eyes have been opened to a world that I never knew existed. One that I particularly would have been fine never finding but unfortunately that just isn’t the case.

There is one thought I wish to leave you with today and that is Organ Donation. Please seriously consider becoming an organ donor. I have desperately been trying to find the silver lining in all of this and bringing awareness to organ donation is it. There are so many people like HG that want to live. I repeat…..HG WANTS TO LIVE. People who were once full of life are now suffering because of disease. Your donation is the only hope that they have to live. Giving the gift of life after you leave this earth is one of the greatest gifts you can give someone like HG and our family. Please, please consider this selfless act because it will be someone like you that can save my brother. Please help me save him. I honestly CANNOT bear the thought of living life without him. Liver Disease is real. Life is short. Hug your loved ones a little tighter and join me in the fight for HG and become and organ donor today.

http://www.organdonor.gov/becomingdonor/index.html