Five Feet Apart-Trailer Reaction

I'm going to preface this by saying that I'm going to react/respond to this trailer as someone who has battled a chronic lung disease but NOT Cystic Fibrosis (aka: CF). The illness that I had that led me to need (and receive) my transplant is Eisenmenger's Syndrome. In layman's terms, every time my heart would beat, the oxygenated blood and deoxygenated blood would mix and enter into my already worn out and severely underdeveloped lungs. My lungs were like leather while someone with CF has lungs that are like thick, creamy peanut butter. While I can never know what it's like to have that illness, I do have an understanding of it and even some of the treatments and medications (Albuterol! Nebulizer!).

Anyway, here is the trailer that was released in November: 

Five Feet Apart Trailer

Personally, anything that highlights a chronic illness and is able to educate the public about it is a good thing. Also, the part where Stella states, "This whole time, I've been living for my treatments instead of doing my treatments so that I can live and.... I wanna live!" really spoke to me and I'm sure many others who have a chronic illness because it's so incredibly true. 

Anyway, those are my thoughts on the film. I can't wait to see it (March 22nd!). If you would like to see a reaction post from someone who has Cystic Fibrosis, I HIGHLY RECOMMEND this one, from Cystik1: 

Five Feet Apart Trailer Reaction from Cystik1

New Year, New Goals, Same Me

Happy New Year! Also, Happy belated Birthday to me!! I can't believe my late-30s have snuck up upon me! Where has the time gone? 

As the title might suggest, I've got goals but am apprehensive that I'll be stuck being the same old me. Here are my goals:

Goals for 2018:

1.) Go the entire year without spending time in the hospital admitted.
2.) Finally loose those stinking 15-ish pounds!
3.) Trust God more.
4.) Improve my culinary skills!
5.) Try to cut more corners financially.
6.) Try to be a more positive person.
7.) Try not to be so into my electronic devices.
8.) Read more books and give myself a reading challenge to try and beat!
9.) Not be so hard on myself all the time.
10.) Try to be more consistent on keeping my apartment organized/clean.

A friend suggested I combine some of these (like #7 & #8) to make it a bit easier to accomplish. The one I know I'll have the hardest time with?  #2. It's always been hard for a few reasons: 1.) my birthday is right after the holidays so right when the New Year comes and I start to get into the zone, celebrations start which throws me off! 2.) I heart pasta! It is truly a weakness of mine! 

Sigh. Do you have any tips/suggestions on how I might be able to accomplish these goals? What do you hope to accomplish this year? Tell me! 

A Thing of Beauty

When I was waiting for my transplant, there was this girl. I'll call her Amy (note: that's not her real name) and she was super pretty. If we attended the same high school, she'd clearly be part of the popular crowd. She had large, expressive eyes, a friendly smile, fashionable (totally suitable for the mid '90s), a Southern accent.....and a heavy cough. She wasn't a smoker; she just had Cystic Fibrosis (CF). A genetic disease that affects (primarily) the lungs and digestive system. At first glance, you'd be struck at how attractive she was....until she was within close proximity and you either heard her breathe (very congested), saw the oxygen on her, or heard her coughing due to the thick mucus that was in her lungs. After that, she might seem less appealing to the average teenage male. Who would want to voluntarily surround themselves with someone who had a chronic, physical (but, at first glance, invisible) illness?

I'm never going to be pretty or gorgeous. Cute? Sure. Adorable? Absolutely! Gorgeous? Fuck no! Why? Due to my incredibly early arrival, I'm always going to have a "preemie" look about myself. Please don't try to humor, assure or (worse) soothe me by saying something like, "but you're so nice and that's more important than being pretty" or "but you're beautiful in the eyes of God" because, in all honesty, that'll only irritate me. 

I'm not trying to say that I see myself as ugly or anything of the nature. I'm trying to point out how, as a society, we put so much emphasis on appearance that someone who might be physically attractive, and want to woo at first glance, can easily get rejected once the mask is removed and their ailments are exposed. Simply, and bluntly, illness makes a person ugly. 

I remember being self-conscious about my appearance when I was growing up; I was always that awkward girl who was a late bloomer that wasn't into make-up until she was in her late teens, didn't start really attempting to style her hair until her 20s and now, in my late 30s, I'm FINALLY trying to create a skincare regiment that works best for me, trying to beat Father Time's ticking clock. I'm not quite sure where I'm going with this, but I wanted to highlight an issue that is happening for those who have chronic, but invisible, illnesses and to let them know that I understand and have been there (heck, some days, I still am).

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.

Happy New Year!!

For me, it's almost 2016. For you, the new year may have already begun. Here is some great advice for the coming year.

The above is so very true. I greatly apologize for sliding off the rails during the last quarter of 2015. I hope to be more consistent with my writing in the coming year. Here are the blog posts that are in the works for 2016: 

~Transplant and the Media-Part 2 (yes, FINALLY!) 

~Celebrity affected by transplant 

~Transplant recipient at work (what it's like to be immunosuppressed yet still out in the workplace) 

~Weekly Feature (I'd like for this to be weekly or monthly......please message me if you would like your story to be told) 

~20 Years: A Reflection (my 20th transplant anniversary will be in June of 2016....I'd like to write a post reflecting on what I've experienced and learned over these past two decades)

~2016 Transplant Games of America (you know I have to talk about this!)

~New idea: GUEST BLOGGERS!! Thiughts? If you would like to be a guest blogger, please let me know!!!

As I wrap this up, here is one more piece of advice: 

TGA2016 Promo Video1 2 24p

WOO HOO!!  A promo for the upcoming 2016 Transplant Games of America is OUT!!  I'm still blown away that this'll take place during my 20th transplant anniversary.  WOW!!!



Here is the website for more info regarding the games. Transplant Games of America

Sooooo many topics

Hi All!

I haven't dropped off the face of the earth.  I've either been sick (stupid flu shot gave me a cold--go figure!), working, or I just have soooo many blog ideas swirling in my head that I can't sit down and decide what I want to talk about.  In fact, I've now got TWO other topics I would like to discuss here.

1) The various wait list times in other countries

2) The public perception on the national waiting list here in the U.S.  Unfortunately, your average American has no idea what goes into being put on the waiting list and what entails an actual match. I'd like to go more into that and explain the finer details.

Plus, I have other things hatching in my brain.  Stay tuned!

YouTubing?

Earlier this year, I started noodling with the idea about possibly starting a YouTube channel/vlogging for two reasons:

1) To use a different form of social media to educate people about transplantation and whatnot

2) There are NO YouTube channels of any kind from a recipient and showcasing their life and what it's like on a semi-daily basis. I think it would be extremely beneficial to those out there on the waiting list, to truly give them a glimpse on what likes ahead for them.

Great idea, right? Here are the main reasons I've been hesitant:

1) I stutter/stammer up the wazoo.  People tell me I'm not as bad as I think but.....

2) I have a suuuuuuper soft voice (thanks to vocal cord paralysis)

3) I'm incredibly self-conscious OF my stammer AND soft voice.


BUT.....on the other hand.....this idea has been floating around in my head, off and on, for the past few months. I love watching other YouTubers and learning what's going on in their part of the world and I don't know if this is God's way of telling me that I should pursue something like this or if it's just a fleeting idea or what!

Thoughts? Comments?  Thank you!