Update on my little mate, Tyler.

This is an update from his mother Holly.  One heck of a strong woman.

My apologies for not posting in a while- here's a long overdue update on what's been happening.

Unfortunately Tyler has been losing weight over the past few months. While it's not surprising given his inability to absorb fat, this downward trend is not good. We are hoping that he can gain some of the weight back but his little body just doesn't absorb like yours and mine does. This is from his liver not working as it should. There is a possibility that he will have to get an NG tube placed, they would like to discuss this at our next clinic visit. I am really hoping he has gained atleast a pound or two back, to avoid having to go this route. Tyler had one of these tubes as a baby and it was not pleasant. 

When the liver transplant coordinator nurse called last week to discuss his weight loss, she mentioned that they got a liver offer for Tyler the week of Christmas. Unfortunately, it wasn't a suitable liver. They have access to the donor labs, cause of death, etc., and based on the factors, it just wasn't a 'good liver'. It gives me a little assurance though that his time is coming, or at least we pray so. 

Today I received another call from his liver transplant nurse. She called to go over his recent blood lab results. His liver enzymes are higher than normal, but nothing alarming. However, the concern at stake now is that the routine lab test that they give every couple of months to screen for cancer, called an Alpha-1-Fetaprotein tumor blood test, came back with an abnormal result. He had a concerning jump in his AFP level. So they would like to do an ultrasound of his liver as soon as they can, to see if there is an abnormality in cells or lesions on his liver.  We won't know anything until the imaging is complete. They are going to schedule this and get back to me as to when it will take place. Until then, I am asking any and all prayer warriors to please keep Tyler close in prayer. I haven't shared any of these lab findings with him, because he has enough on his plate to contend with. 

I will give another update as soon as we get more answers and info.

#TylerStrong

Todays appointment

At my appointment and noticed that they have candy. Left to right. Gum, marshmallow, chip sticks and they thing that makes you gag to throw everything back up. I'd rather just get a mr man sticker 🙂 At my appointment and noticed that they have candy. Left to right. Gum, marshmallow, chip sticks and they thing that makes you gag to throw everything back up. I'd rather just get a mr man sticker 🙂 And I just noticed alcohol wipes. Good news is that I dont have to take my meds for the virus anymore which means I will not vomit everyday and have fatigue anymore. Cant wait to get these meds out my system. Great news.

And I just noticed alcohol wipes.

Good news is that I dont have to take my meds for the virus anymore which means I will not vomit everyday and have fatigue anymore. Cant wait to get these meds out my system. Great news.

Hopefully goodbye Prevymis .

Heart Awareness car project

So when I started feeling better I decided to change the look of my boring car to something that will stand out and get attention focused towards my website.

The vinyl isnt quite finished but it's getting there. I pray someday that I meet my donors family but I pledge until the day I die I will keep promoting organ eye and tissue donations. 

I just wish I had a secret fund that I could use to make this one heck of a vehicle to make kids remember. 

The heart with the 8 represents a person can save up to 8 lives and impact up to 50 people.

114000 people in the US are waiting for life saving transplants and 20 people die every day here in the US after waiting and running out of time.

Either click on the link within my website or go to life saving sign up

Monday morning.

So it's Monday morning again. Had a pretty rough night sleep. Woke up with a stomach ache I'm just tired in general. I'm hoping that's the day goes on it's going to get a little easier but everyday is like yesterday. I just have to fight on and keep focused on the finish line. I have a nurse visit later on going to go home and have a nice English cup of tea. And then tomorrow I have appointments at OSU. If you're not having a good Monday then think of the people that are worse off than you. Have a wonderful day.

Cardio Friday

Good workout. Feeling better every day.

Presentation at OSU

So i was honored to be asked to speak at one of Healing Hearts Thursday evening meetings. To have gone through 7 years of intense craziness it's amazing to realise I'm still here and now i am telling other people my story. I had no nerves or worries about doing this. My only concern was the tremors that always happen after I've walked somewhere or i am trying to get ready and i really am just trying to relax. The first couple of minutes i had to ask for forgiveness as the shaking is really just a feeling but controls everything.

Once i had overcome that, i clicked on my PowerPoint and started my presentation. Ever since having this heart issue i have had a few problems with memory so looking at a screen with photos allowed me to carryon with my adlid and allowed my audience something to look at because I'm no hunk!

At the end i had so many questions to reply to, which made me think, these people really were listening to me. And to have people afterwards stand in front of me with tears in their eyes thanking me was a humbling experience. 

This has now opened up my mind and I want to keep presenting and inspiring.

Watch out world I'm on a roll

From Edward Drake. YNOTT

I’m proud of my brother Mark Sandy for all he’s overcome (Heart Transplant, Cancer, etc) and how he’s utilizing those experiences to help impact the lives of others🤝. Seeing firsthand what all the Lord has done and is doing in his life is a remarkable feeling. If your in Columbus, Ohio on Thursday March 14th please go listen to him speak at The Ohio State University Wexner Medical Center. Also, visit his website www.HeartofMark.com. I’m fortunate to be connected with some amazing individuals from all across the 🌎 that are fulfilling their various callings and destiny😄

Monday Monday Monday...!

What can i say about Monday so far. Not a lot. Death and depression.  I hope Tuesday is better. Cardio and then meetings. Oh and signing up for LiveStrong.

Sick of feeling like other people are better than me. We are all humans and we should treat each other in a better way. Be honest and be real. 

There's always good news then followed by bad. Welcome to my world day uhhmmm lost count. Peace. 

Hump day

Kidney number is creeping up again. No urine infections. White blood count a little high. 

No flu virus. But Josh has now been tested for strep and flu. Positive for both. Bad news for all of us. 

I feel so bad for Josh. Now we have to stay away from each other. 

TVs all over OSU displaying Dr Emani and my presentation on the 14th. Don't forget anyone is welcome but must send a RSVP. The flyer is in this blog.

Thanks to the salesman at Best Buy this afternoon for making the modem/router an easier buy. Go share my website. www.heartofmark.com

Great news

I just got the news that i will be back on the heart transplant list.
My cardiologist has decided that it's time considering i have have a clot and i am totally cancer free.
This doesn't mean it's all going to happen overnight but this is the best news ever.
6 years of congestive heart failure takes a toll on a person and it couldn't have come at a better time because i found myself losing hope.
So today i get extra bloodwork and the proceaa begins.
I now have to take a deep and try and get past current issues.
My miracle is becoming a realisation.
But the thought of a hero out there saving my life is yet another obstacle i have to face.
Thank you you Lord.

New website look!

So hopefully the new website looks good and is easy to navigate. Still plenty of updates but I think it looks awesome.g

Me on stage

Check this video out of me on stage http://youtu.be/04oAfIbiNA8

T-shirts

T-shirts are ready to purchase from me & online