I can’t breathe …

There’s a 50 pound bag of cement sitting on my chest. No, wait. There are two. They are so heavy that I can barely breathe. Crushing. Suffocating. But, the strange thing is that even though I feel like I have weight on me, there’s nothing there. It’s emotional weight.

Yesterday I got news of a liver transplant friend who passed away. You would think I’d get use to it, right? Eighteen people die every day waiting for transplants. That’s 6500 people a year. It’s just a part of the world I live in now, right? But I can’t get used to it. I can’t.

Maybe it’s because I saw the pain in my wife’s eyes while she watched me dying. Maybe the memory of my mom’s tears and the look on her face when she looked at me will never fade. I hated seeing them hurting so … because of me. I bet it is the same regardless of the fight: liver disease, cancer, ALS, COPD.

The first sack of cement hit me with yesterday’s news that Jessi Hillborn died. Jessi was an young wife and mother with an infectious positive outlook and welcoming smile. Jessi was a fighter who already got her transplant just a handful of weeks ago. She did so well she was released from the hospital just 4 days later! She started asking our support group about the normal aches and pains following surgery but as she did she always laughed and joked. But then fevers started coming. Fevers are not good for transplant recipients. We told her to check with her team.

Jessi posted that she was admitted to the hospital with GVHD (Graft vs Host Disease). GVHD is when the cells of the transplanted liver attack the host. Even though Jessi’s posts were positive I knew she was in grave danger.  Upwards of 75% never leave the hospital with a diagnosis of GVHD. I prayed and hoped as best I could. If anyone could beat it it would have to be this energetic, warrior mom. I was wrong. The news of her death and the mourning of her family now sits on my chest.

And then, this afternoon while I was watching my Red Sox battle the Rangers, I took out my phone to glance at Facebook and read a post that a young husband should never have to write.

To all my friends and family. This morning, Rachelle had a major bleed out. The cause unknown. Her heart stopped for a bit, but they got her working again. However, given her volatile state, they would never determine that she would be strong enough to survive a transplant. As her husband, this duty came to be the hardest choice I have ever had to make in my life. So, on May 5th, I had to let her suffering end and let her go. To all of you who were blessed to know her in life, thank you for sharing our moments of joy and sadness. But it is over now. Rachelle Passmore, my wife, is dead. – Alan

Rachelle and Alan

Rachelle and Alan

I couldn’t breathe. The second bag of emotional cement landed on top of Jessi’s. Rachelle died waiting for a liver. Waiting. She died while hundreds of life-saving, usable organs were tragically buried in the ground today. Hundreds yesterday. Hundreds the day before.

We’re not talking about a terminal situation here. Rachelle did not have to die. If she had received a liver she might be living and enjoying life soon just like I do today. I think wasting usable organs is like having cancer and watching the cure washed down the drain. Could you handle that if a loved one was dying of cancer while their chance at life was just thrown away over and over again?

These two bags of emotional cement will sit here for awhile even though I never met Rachelle or Jessi. My disease connects me to them and to their families. Either of their stories could have been my story. Thankfully Jessi’s story is no longer common in the transplant world. Sadly, Rachelle’s is.

What can I say to get you to register as an organ donor? What can I do to persuade you to join our cause of registering so many donors that we will end the wait here in the United States?

Every person I convince to take 5-10 minutes to register takes weight of my chest.

Please? Now? http://www.donatelife.net 

About Scott Linscott

Living life to the fullest, walking in the dust of my Rabbi, creating art through photography and written word, speaking words of hope and encouragement at conferences, workshops, church and civic gatherings.
This entry was posted in chronic illness, End Stage Liver Disease, Fatty liver, Fatty Liver Disease, Liver disease, liver keys, NASH, organ donation, Organ transplant, transplant and tagged , , , , , , , , , , , , , , , . Bookmark the permalink.

29 Responses to I can’t breathe …

  1. CG says:

    I lost my husband almost two years ago, waiting for the
    transplant of a living donor’s liver. I feel the transplant team
    just waited to long. When he was healthier and strong, they said he
    wa s not yet in need of it. Then they allowed him to get sicker, on
    a ventilator, kidney machine and lost of meds. He contract two
    infections that his body was to weak to fight. Why did they wait. I
    never understood this. Now, I have a new friend, who also has found
    out he has Hepatitis C. I went with him to the liver biopsie. They
    will put him on interfiron an ribavarin and some new drug. They
    told him he had a very curable form of Hep C. I hope that is true.
    I don’t know if he has come into my life so I can be his support.
    Which he does not want. He is very independent. I am not sure I
    could go through it with him what I did with my husband. It was
    three years of comas, celulitis, and lots of meds. I know he was
    not himself the last year he was with me. I am a donor, for
    whatever is needed, but I have never been contacted. AM I to old to
    donate now. I am 57.

    • I am so sorry. Maybe I can help you understand the waiting game as it was explained to me. My doctor, Amy Tien, did such a good job helping us understand. We, like a lot of people, thought a transplant would heal me and make me totally normal again. She helped us understand that life after transplant can be good but will never be the same. She explained it as a quality of life issue. Many, if not most, people have major limitations after transplant and many have complications. When my MELD dropped to 16 and I had no ascites and appeared well, it was not time to transplant. The target time was 22 so it looked like we had time to get my donors tested. When Fall hit I declined FAST! By March I had an unknown blood infection, sodium issues and encephalopathy and a MELD of 36. I was removed from the transplant list and had a code blue episode. Because of prayer and the gifts of a specialist I rebounded, cleared the infection and dropped to a 27 MELD by mid-April. I was transplanted May 7.

      Today I am doing great! But as great as I am, I am not what I was. Fatigue, side-effects, medicines and a compromised immune system has me living differently. I am just now starting to try my quest to get off disability to full employment. I am certainly blessed. Most never go back to work but I am determined to do it, Lord willing.

      I was worried in March. It looked like we hadn’t moved fast enough. I understand what you are saying. Some live for 8-10 years with a meld below 20 and some, like me, go downhill fast.

      I wish doctors knew better which of us were going to deteriorate fast so they could move fast but they have no crystal ball. 😦

      I am so sorry for your loss. I am praying that advances in Hep C medicine will cure your friend.

  2. daltonlee says:

    Thank you Scott for posting this. My new mission is to educate as many people as possible on organ donation/live donor programs. I think this is my biggest fear as a caregiver/spouse. I watched a friend watch her husband die because his kidney failed, and then I lost my aunt and a good friend within 10 minutes of each other one night – both to kidney failure. As you know my husband has been waiting on a kidney for 8, going on 9 years now. I know full well the feelings that you are talking about your wife and mom having. It’s scary to watch someone you love slip away. Charlie feels the dialysis sessions more and more lately. We pray and we are trying to be positive. I have started to go out and speak and do information tables to share his story and talk to people about donating but I can’t escape the feeling I should be doing more, don’t know what but the feeling is there that I should do more. Praying for the peace of God to engulf both families and you. I know it’s hard. Blessings to you my friend.

    • I pray for your sweetie every day and follow your updates. I am so thankful for your example and your discipline to stay as positive as possible. I know how difficult that is!

  3. serenading sweetheart says:

    As one of millions of HepC ‘victims’, I am sad to say that
    they have not yet found a way to ‘clean up’ all the organs I would
    be more than happy — enthusiastic even — to donate to keep
    someone else alive. The medical science wheels turn slowly, but I
    think that many of us who may one of these days be waiting in line
    for a liver transplant would jump at the chance to be a
    donor.

  4. Teresa Deak says:

    It’s so needless, isn’t it? I’ll share your tragically
    beautiful blog post on Twitter and Facebook, so that my friends and
    followers can also be an organ donor, as I am. I’m grateful that
    Facebook now makes it easier than ever to register as an organ
    donor. I know an 8 year old who has had 2 heart transplants. She is
    an amazing little girl full of life and light and stories. So
    beautiful. Hugs and butterflies, ~Teresa~

  5. Emily Parker says:

    Hello, Scott. A lovely friend of mine linked me to your
    blog, and I must say thank you. Rachelle was my very, very best
    friend, she saved my life when I was ready to give up, and I was
    moving from the east coast to the west coast to be her
    post-transplant caretaker. Her mere presence in the world has made
    all who encountered her better, and I thank you for the bottom of
    my heart for honoring her in your post and with your friendship.
    Good luck on your transplant journey. I wish you the very
    best.

  6. Chinedu Clement says:

    i want to save a live to contrbute to in helping peopple in
    need

  7. akismet-1b84af68810ce5f633f396f1cc0a2a68 says:

    So I registered in California and Colorado this evening. There’s got to be something on an old coots body slowly dying of cancer they can use.

    Courage, Strength, and Honor

    owed to Unfathomable Grace,

    Gary

    (New) 970 462 1239

    gary@newseason.us

    PERSONAL BLOG Wild Gray Goose

  8. Kathy says:

    I became a donor over 25 years ago. It is on my license and
    my family members know as well that if something were to happen to
    me, they are to make sure that usable organs are donated asap. I
    met a beautiful woman last summer that made me aware that it is
    important to be a donor but YOUR FAMILY must be aware of your
    decision to make sure that you wishes are carried out. I had never
    thought of that before I met her. I continue to encourage everyone
    I know and meet to do the same.

  9. Scott, I am passing this on and praying that your story and
    these beautiful angels help people to make the decision to donate
    organs. I have been really touched and saddened by the news of the
    ladies passing. I refuse to sit idly by without telling their story
    and our NEED as well as others…. Beautifully written, You are a
    wonderful man and we are all so blessed you know you…God
    Bless

  10. Anonymous says:

    Scott may I share your Blog on the reverse fatty liver site
    Michelle has set up? I help to write the Organ Donation blog on the
    site and I believe this would be a powerful message to
    share.

  11. Narelle says:

    so sad Scott, this shouldn’t have happened. I have shared
    your link on my facebook page, maybe one more person will make a
    decision. My friend received a new liver and I know what a great
    gift this is. Stay strong Scott, continue with your campaign, you
    may never know who joins because of you but you will know that you
    are making a difference.

  12. My best friend is waiting for the gift of a liver. I never
    want anyone to die, but it happens. We all die. I just want to make
    sure we are all aware the we can save lives. We need to give these
    gifts. We need to share our lives with others and help them live.
    Be a donor NOW! http://www.DonateLifeAmerica.com WE can make a
    difference today and become a hero. My heart breaks when I hear of
    someone that missed the chance of life because of a lack of donors.
    Thanks for helping TODAY!

  13. Believer says:

    The road of life and death is well known for not only pre and post transplant patients, but for those who are their caregivers, and close family. Even so, it’s always hard to deal with it. Some time after Carlos received his liver, we began working as volunteers for Life Link here in Puerto Rico, we would try to give patients that were waiting their much needed support. ON the way, we made friends, and lost friends. With every passing their is heartbreak and sorrow, but the only thing we can do is keep helping and working towards organ donation, there is no other way. May our Lord give consolation through our prayers and thoughts and through the arms of those who are close to them. Bye Scott!

    • My hope is to do all I can here in New England to raise awareness and reduce the wait.

      • Believer says:

        Curiously the first time my husband was listed in 1993 (I think), it was in New England. We were pretty devastated when it didn’t happen there, it was a pretty bumpy road up there. Nevertheless, we were blessed when we decided to list him in Florida, within a couple of months he received his new liver on June 5, 1995. I’m happy you’re a great advocate for organ donation awareness and hopefully your actions will work towards lesser time waiting, and more people having the opportunity both you and my husband had.

  14. Anonymous says:

    Today I have that same feeling……..my dad passed away. I join you in praying for the families who have lost a loved one.

  15. julie goodwin says:

    The sadness comes through in your words. I am so sorry for them and those that loved them. I am an organ donor; says it on my license. Blessings while you grieve. Julie G

    Julie On May 5, 2013 7:35 PM, “My Life & Transplant Story: Drinking from the Same

  16. Anonymous says:

    I am so sorry, Scott. Losing those friends is like losing a part of yourself bit by bit. The frustration I had while waiting for my husband’s donor to be authorized was crazy! I just wanted someone to do something from the time I realized I could not donate, I just felt completely hopeless. Just keep going, educating and inspiring others as you go. Your life is not being wasted!

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