1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy
Mentor

Snapshots of hope: Life on the other side of transplant.

Posted by Lori, Volunteer Mentor @loribmt, Feb 24, 2022

My husband snapped a photo of me walking on a beach this morning. I was running through the surf, picking up shells, smiling and feeling on top of the world with unabashed joy for being alive and healthy. So what?
Well, it’s a photo that wouldn’t exist if I hadn’t had a bone marrow transplant. It’s a snapshot of hope!

Three years ago today I was diagnosed with Acute Myeloid Leukemia, an aggressive blood cancer and fighting for my life. Prospects of ever being able to walk a beach again seemed beyond reach.
With a lot of chemo, I achieved remission, but my only hope for a future would be a bone marrow/stem cell transplant as the cancer would likely return. Let’s just say, that procedure isn’t a walk on the beach but it gave me a second chance at life and well worth the arduous journey it took to get here!

Along this journey, I’ve been able to help inspire and give hope to others who have faced my same battle. I’m alive, surviving and thriving because of a gift of life from my anonymous donor.

When facing a transplant, whether it’s stem cells, or a solid organ, it can be a daunting prospect. I think a gift we can give, as transplant survivors, is to share our positive transplant stories with anyone who is about to undergo the procedure or is in need of reassurance in their recovery.

Show me your Snapshot of hope! What photo do you have that wouldn’t exist without your transplant?

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

Mentor
Lori, Volunteer Mentor | @loribmt | Nov 19, 2022
In reply to @dlovdahl "Hi all, Just received my kidney gift of life from a dear friend October 27. Here’s..." + (show)
@dlovdahl

Hi all,

Just received my kidney gift of life from a dear friend October 27. Here’s a picture of my loving with and caregiver as I got to ring the bell. I feel truly blessed to get such an amazing gift and even more special who it came from. Looking forward to many new adventures in my life.

My personal motto and meaning of it is in the pictures.

Love everyone’s stories!!

Dan

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A hearty congratulations, Dan! What a precious gift of a second chance at life with a donation from a long time friend! Wow, that is true friendship! ☺️
Thank you for sharing your story and the photo! Photos like this are priceless.
The hallway behind you looks familiar. Mayo-Rochester?

REPLY
Joe | @giuseppe | May 18, 2023

Life took a radical turn for me in April. I got very sick very quickly. My husband and I were all set to travel to Mayo Clinic - Phoenix Instead I was rushed to UCSF in San Francisco. My MELD had shot up and I had an unrelated problem with being allergic to statins. Atorvostatin was slowly destroying my muscle mass!

I was listed at UCSF in 4 days and on 4/20 a liver came in. At last minute the surgeons told me it wasn't right for me and I was taken back to my room. One half hour late they took me back to surgery because a SECOND liver came in. I woke the next morning with a 'new' liver!!!!! I thought I might have to wait months or years for a transplant, especially in California.

I feel like I cheated in a way because I only had one serious bout of illness after living with Hep B and Hep Delta for decades and I only felt really bad in late March of this year.

I'm doing really well. The staff at UCSF was wonderful but I found the liver ward chaotic, I'm so glad to be in my humble little house. My husband is an excellent care giver. I'm improving rapidly.

I am still considered chronic for Hepatitis B with a co-infection of Hepatitis Delta.

Curiously my Hep B numbers were undetectable BEFORE I started to feel really ill in late March. I had gotten a Hep Delta Quantitative blood test in mid March. My numbers were 25,000, down from over 600,00 in last fall.
Over all I feel immensely grateful and so very lucky. I know I would have gotten great care at the mayo clinic but it would have been challenging to be 900 miles from home, having to find family and friends to stay with me for an unknown amount of months.

You can see the video I made for the Hepatitus B Foundation in 2019 here: https://www.hepbstories.org/justb-storytelling-campaign/joe?rq=Joe
The photos show me at UCSF and then at home with my sister and old school freinds.
REPLY
2 replies
Joe | @giuseppe | May 18, 2023
In reply to @giuseppe "Life took a radical turn for me in April. I got very sick very quickly. My..." + (show)
@giuseppe

Life took a radical turn for me in April. I got very sick very quickly. My husband and I were all set to travel to Mayo Clinic - Phoenix Instead I was rushed to UCSF in San Francisco. My MELD had shot up and I had an unrelated problem with being allergic to statins. Atorvostatin was slowly destroying my muscle mass!

I was listed at UCSF in 4 days and on 4/20 a liver came in. At last minute the surgeons told me it wasn't right for me and I was taken back to my room. One half hour late they took me back to surgery because a SECOND liver came in. I woke the next morning with a 'new' liver!!!!! I thought I might have to wait months or years for a transplant, especially in California.

I feel like I cheated in a way because I only had one serious bout of illness after living with Hep B and Hep Delta for decades and I only felt really bad in late March of this year.

I'm doing really well. The staff at UCSF was wonderful but I found the liver ward chaotic, I'm so glad to be in my humble little house. My husband is an excellent care giver. I'm improving rapidly.

I am still considered chronic for Hepatitis B with a co-infection of Hepatitis Delta.

Curiously my Hep B numbers were undetectable BEFORE I started to feel really ill in late March. I had gotten a Hep Delta Quantitative blood test in mid March. My numbers were 25,000, down from over 600,00 in last fall.
Over all I feel immensely grateful and so very lucky. I know I would have gotten great care at the mayo clinic but it would have been challenging to be 900 miles from home, having to find family and friends to stay with me for an unknown amount of months.

You can see the video I made for the Hepatitus B Foundation in 2019 here: https://www.hepbstories.org/justb-storytelling-campaign/joe?rq=Joe
The photos show me at UCSF and then at home with my sister and old school freinds.

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Thanks to Coleen for suggesting that I share my story here.

REPLY
Mentor
Lori, Volunteer Mentor | @loribmt | May 18, 2023
In reply to @giuseppe "Life took a radical turn for me in April. I got very sick very quickly. My..." + (show)
@giuseppe

Life took a radical turn for me in April. I got very sick very quickly. My husband and I were all set to travel to Mayo Clinic - Phoenix Instead I was rushed to UCSF in San Francisco. My MELD had shot up and I had an unrelated problem with being allergic to statins. Atorvostatin was slowly destroying my muscle mass!

I was listed at UCSF in 4 days and on 4/20 a liver came in. At last minute the surgeons told me it wasn't right for me and I was taken back to my room. One half hour late they took me back to surgery because a SECOND liver came in. I woke the next morning with a 'new' liver!!!!! I thought I might have to wait months or years for a transplant, especially in California.

I feel like I cheated in a way because I only had one serious bout of illness after living with Hep B and Hep Delta for decades and I only felt really bad in late March of this year.

I'm doing really well. The staff at UCSF was wonderful but I found the liver ward chaotic, I'm so glad to be in my humble little house. My husband is an excellent care giver. I'm improving rapidly.

I am still considered chronic for Hepatitis B with a co-infection of Hepatitis Delta.

Curiously my Hep B numbers were undetectable BEFORE I started to feel really ill in late March. I had gotten a Hep Delta Quantitative blood test in mid March. My numbers were 25,000, down from over 600,00 in last fall.
Over all I feel immensely grateful and so very lucky. I know I would have gotten great care at the mayo clinic but it would have been challenging to be 900 miles from home, having to find family and friends to stay with me for an unknown amount of months.

You can see the video I made for the Hepatitus B Foundation in 2019 here: https://www.hepbstories.org/justb-storytelling-campaign/joe?rq=Joe
The photos show me at UCSF and then at home with my sister and old school freinds.

Jump to this post

Thank you for sharing your story with us, Joe! What a wild adventure. I’m so happy everything turned out well for you. Now your home and recovery can continue. It sounds like you’re in great hands with your husband as a caregiver and you have lots of friends and family for support. Ahhhh, be it ever so humble, there’s no place like home. ☺️ Congratulations!

REPLY
myfablife | @myfablife | May 18, 2023

Congratulations wishing u and your family the BEST💚💙

REPLY
leonardg | @leonardg | Oct 17, 2023
In reply to @rosemarya "This is photo of me on the stairs in the Gonda Lobby of Mayo Rochester. While..." + (show)
@rosemarya

This is photo of me on the stairs in the Gonda Lobby of Mayo Rochester. While waiting for transplant, and needing assistance to walk, my hope was that someday I would be able to walk down these stairs. And I did, during my 1st annual visit!
While awaiting my transplant, my husband and I decided that if we got thru this, we would go back to Alaska. This is me, at the Exit Glacier near Seward Alaska.

My liver and kidney transplant was in 2009. These photos were taken in 2010.

I want to tag -@dbirkel21, @kathycaudle, @karen51, @joko - What photo do you have that wouldn’t exist without your transplant?

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This is wonderful Rosemary! Thank you for sharing. These posts are actually for my husband. This is his wife K. We are being cautiously optimistic for a transplant. Your story gives us hope. We start evaluation for liver transplant at Mayo Phoenix this week. Also 10 yrs in the making. Hope. Keeping the FAITH. Confident in Mayo. Thank you again.

REPLY
manishgang | @manishgang | Oct 21, 2023
In reply to @colleenyoung "I'm tagging @athenalee @estrada53 @melody12 @leahdrose @hello1234. Will you share your snapshot or story of hope?..." + (show)
@colleenyoung

I'm tagging @athenalee @estrada53 @melody12 @leahdrose @hello1234. Will you share your snapshot or story of hope? When you do, please tag at least one other member and invite them to share their story too.

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So wonderful to see this , very glad I came across this group . Give me lots of hope which otherwise had been terrifying , painful and depressive post my liver transplant 6 months back .
Message is loud and clear - get up back , walk as much as you can and enjoy life.

Love to hear more experience. Best wishes to all and me 😃

REPLY
gap | @gerryp | Feb 4 8:43am

This picture was taken just about a month ago when I was able to meet my first grandchild - something I wasn’t sure I would ever live to see. I had gotten suddenly & critically ill in March 2020 due to a gallstone attack - went into septic shock and nearly lost my life in March 2020 at age 60. Several months later my medical team informed me that I had suffered permanent liver damage and that the only cure was a liver transplant. I was completely incredulous. How could this happen? I had been an active, healthy man with no underlying medical conditions. I waited nearly 2 years on the transplant list at 2 different hospitals - but was successfully transplanted at Mayo Jax in Feb 2022. So it’s just about 2 years since transplant - and I daresay I feel amazing & healthy. I never truly believed I would ever feel normal again - but I think this picture captures the success of my recovery. I am forever grateful to my donor and his/her family for the gift that ultimately saved my life - and let me experience the joy of new life. My perspective on life and my priorities have changed as a result - all for the better. How could they not? I hope to pay this forward - to all those waiting for transplant and those recently transplanted. Have faith in the process. Mayo transplant team is amazing.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Feb 4 9:07am
In reply to @gerryp "This picture was taken just about a month ago when I was able to meet my..." + (show)
@gerryp

This picture was taken just about a month ago when I was able to meet my first grandchild - something I wasn’t sure I would ever live to see. I had gotten suddenly & critically ill in March 2020 due to a gallstone attack - went into septic shock and nearly lost my life in March 2020 at age 60. Several months later my medical team informed me that I had suffered permanent liver damage and that the only cure was a liver transplant. I was completely incredulous. How could this happen? I had been an active, healthy man with no underlying medical conditions. I waited nearly 2 years on the transplant list at 2 different hospitals - but was successfully transplanted at Mayo Jax in Feb 2022. So it’s just about 2 years since transplant - and I daresay I feel amazing & healthy. I never truly believed I would ever feel normal again - but I think this picture captures the success of my recovery. I am forever grateful to my donor and his/her family for the gift that ultimately saved my life - and let me experience the joy of new life. My perspective on life and my priorities have changed as a result - all for the better. How could they not? I hope to pay this forward - to all those waiting for transplant and those recently transplanted. Have faith in the process. Mayo transplant team is amazing.

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Aww, what a beautiful baby and proud grandpa! I’m so happy for you and your family. It’s moments like this we feel the impact of just how precious life is…and to be given a second chance through a transplant, is priceless! Thank you for sharing your grandbaby and your story with us! ☺️

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