MIA Explained!

Hi All!


Sorry that I've been MIA for so long!!


My last post was back in May, when I was in the middle of seeing the skin & wound care doctor regarding my feet.  Good news is that my feet are all better and I'm no longer wearing bandages around my legs.


The not-so-good news is that these foot ulcers were a pre-existing condition going back PRE TRANSPLANT plus, I have to wear compression socks FOR-EV-ER (imagine the character Squints from the movie The Sandlot saying that ;-) ).


Also, about three months ago, I celebrated the big 2-0 anniversary while at the Transplant Games of America (in Cleveland, Ohio).  Speaking of the games, I had a wonderful time though no medal (grrrr).


It's now September.  It's still hotter than heck here in Florida but I'm feeling pretty good.


OH!  I created my OWN Facebook page!  Check it out and give it a "Like" please!


Kimberly Jacques, Organ Transplant Recipient Mentor & Advocate


I haven't forgotten about this blog, promise! 

MEDS!!

YAY!!!  A new vlog FINALLY!!  Enjoy!!

TRANSPLANT GAMES OF AMERICA!!

Enjoy!

Sanitized Visits?

Latest vlog post!  Enjoy!

100 Days

In 100 days, I'll be celebrating my 20th transplant anniversary/birthday. I truly can not believe it and, at times, wonder what I did to deserve this amazing longevity. Only 40% of heart/lung recipients make it five years post-transplant so, according to my math, only 5% of heart/lung recipients make it this far. That's an incredibly humbling statistic and though I remind myself that I'm not a statistic but a person first and foremost, I'm still stunned at how well I'm still doing, all these years later. So eternally grateful to my anonymous donor and donor family because without them, I wouldn't be writing this post right now. 

Organ Recipient--Susan Szmanski

(in her own words)

My" I Can Live Day" is fast approaching March 10, 2014. I call it that because "I" survived "CAN"cer by "Live"r transplant that day. That day I received the greatest gift one can obtain the gift of life. So this is my story. I am a "Survivor!" Since I have been blessed to have a second chance, I am committed to making every moment count for all those who have been affected by this disease. In September 2013 I was diagnosed with hepatocellular carcinoma HCC an extremely progressive and more often a deadly form of cancer. When I got the news I was literally & figuratively alone. I can't describe the feelings. I felt helpless, out of control, and my world was crumbling. The over whelming sense of the unknown was unbearable. Liver cancer (2 - 6 months). Wow!!! My head was reeling. I have two kids, a senior in high school and a sophomore in college. I haven't even had a chance to make a difference in the world. I can't die. So many people depend on me. What to do? My entire being screamed. 

9 weeks post cancer and liver transplant, at a Lady Gaga concert!

A day later I was rushed to getting every test imaginable. In October I was informed that the cancer was advanced stage 3 liver cancer. Then off to the interventional radiology for where I was successfully treated with interventional chemotherapy. It was not going as well as they thought I was having difficulty with liver failure and encephalopathy with each treatment requiring extended hospital stays numerous times. But by November the cancer wasn't responding fast enough to the treatment(s). My liver was shot and I needed a liver transplant and didn't qualify* for one. So I was told there was not much else they could do. I was placed in palliative care and told "at least it's not hospice yet". I was abandoned and truly alone. Every day was agonizing what can I do to get a doctor to believe in me and that I was worthy of saving. I couldn't be placed on the UNOS waiting list because with cancer you have to have no more then 3 tumors totaling <5 cm. I had 2 tumors totaling 7.9 and the beginning of a 3rd and my liver was full of residual nodules (cancer cells starting tumors) to numerous to count. The doctors didn’t believe they had the time to keep me alive long enough during the chemo treatments because my liver was so damaged and it couldn’t take much more. But the doctors still needed to treat and shrink the cancer but they didn't think I couldn't take the abuse. I was to great a risk. I was truly abandoned. With that said - I wasn't ready for "get your affairs in order" and I wasn't ready to die. Three days later as the devastation set in I sought a second opinion where I met a young surgeon (my Superman) from University of Maryland Medical Center Transplant Division. The surgeon reviewed my MRI then turned to me and smiled brightly. As I stared at him with tear filled eyes he nodded, he took my hands, looked me in the eyes and said he was willing to take the risk. He could cure me. Then I moved onto radiation treatments. The ugly truth was I had stage III liver cancer, a critically failing liver, cirrhosis and on top it I was unbelievably sick and sick from all the treatments. I barely had any liver function and I was fading fast. I hardly knew who I was, where I was, or who my family was. The situation was dire but I held on and continued. I was in the hospital most of the time only to return home for a few days and then back again. My health was steadily declining. I wish I could describe what was happening but I find it difficult and most unpleasant to describe and share. Just imagine going through liver failure, radiation and chemotherapy all at the same time. My liver was a war zone and I was not doing well. Two weeks after having the radiation treatments I went to the National Cancer Institute for continued chemotherapy because the cancer was still steadily growing. I was very difficult each and every day. Then after several weeks as promised on February 28, 2014 my cancer had shrunk and I qualified for being put on the wait list for liver donation. So with what little liver function I had left I dug deep and fought with every inch of my soul and continued on. But by then everything was taking its toll. I needed a liver and I needed it quick.

First 5K, 6 months post cancer and liver transplant!

Then eight days later I was rushed to the emergency room. I was failing and I knew it. I was at the end. I was truly sick and didn't have much fight left. I was really tired. After several hours of being seen by many doctors, many tests, and medical procedures I was admitted for end stage liver failure and kidney failure. My organs had enough and they were shutting down. This is when the docs decided to with hold life sustaining blood products and to let me pass. The family was being called to gather. During this time in a moment of silence I surrendered to God. I remember the moment. I talked & prayed with him for a while and he comforted me. Then a few hours later I was in the elevator being transported to a room (almost my final resting place) my cell phone rang. My husband said "Shh, someone's on the phone about a liver". Then a beautiful voice spoke and asked me if I would accept the donation of life (a liver). I had one choice "YES". 

After several hours of waiting to get the word that the liver was viable I was fading in and out but comforted. Then suddenly the door flung opened and on an IV pole appeared with numerous bags of multi colored fluids. And it was a go. So they pumped me up for awhile and I became lucid again. Then Dr Hanish came through the door and asked me what was taking so long. He my Superman took me to the Operating Room on March 10, 2014 at 3 pm by for a liver transplant. Supermen really do exist.
It's been almost two years and the cancer is gone. Life is good and I'm making every moment count. Since I have been spared I'm doing everything I can to help others who are struggling. I hope one day we will finally conquer this beast. Yeah! It was a struggle to get where I am today. "Remember the greater the challenge the sweeter the reward." That is why I'm participating in American Transplant Games 2016 by biking/racing for this cause. I am so happy to be here today and to be who I have become. Since I have been spared this is "WHY I RIDE". I feel the love with every breath I take.

Photos and story used with permission

Kimothy's TRUTH

New vlog post!  Enjoy!

Kimothy's TRUTH

Kimothy's TRUTH: Transplant Recipient Understanding Those Hoping

YouTube

Hi All!

Just letting you know that I started my YouTube channel and my two videos should be uploaded by the time you're reading this.  YAY!!  If you have any transplant-related topics you think I should try to tackle on my vlog, just let me know! Thanks!


Kimothy's TRUTH

Happy Birthday To Me!!!!!!!!!!!

Good news: IT'S MY BIRTHDAY!!!!

Not-so-good news: I feel like crap!!!!!!!!!!!!!!

So, today I'm just taking it easy with my sweet doggie.  I just took a much-needed bath and am about to go and get some fresh soup (hopefully, chili!) at my local supermarket plus some yummy frozen yogurt!

Tournament of Roses Parade--Donate Life

One more thing!  Just a quick reminder that the Tournament of Roses Parade, in Pasadena, California, will air LIVE TODAY, January 1st, at 11 AM ET/8 AM PT on various channels!  You can watch it on the following networks:

ABC
NBC
Univision (Spanish channel)
Hallmark Channel
HGTV (Home & Garden TV)
KTLA5 (local channel in Los Angeles)
RFD TV (a channel for rural America)
FamilyNet (a religious channel)
Rural Radio/Sirus FM
Sky Link TV

Also, here are the key international outlets:
MVS Television (Mexican TV network)
AFN (American Forces Network)
Zcafe (Indian/Hindu cable & satelite network)
China Movie
HD1 (French TV channel)
Sky Pacific (South Pacific TV network)
Teletica7 (Costa Rica TV network)
MediaCorp (Singaporean TV network)


The Donate Life Float has been around for 10 years and numerous friends of mine have been lunch enough to be chosen as float riders or walkers or have their loved one represented as a floragraph. This year's theme is "Treasure Life's Journey" and, as one might imagine, those of us within the transplant community certainly know how to do just that. Here is the design for this year's float--keep an eye out for it this morning!

Things that make you go hmmmm.......

Here's something strange that happened last night:

While I was in the middle of eating my pasta, I had the sudden, overwhelming feeling that I should pray for my donor family. I've never had that feeling in previous years but last night, around 9 PM, something said, "Kim, pray for your donor family and the coming year!"

I was taken aback and don't know if it's because this year is a big anniversary (for me and them) or because I'm trying to reach out to them or what. So when I was in mid-chew I sent up a silent prayer to them.