Hope for you!

Hello all! I’ve been a member for a while, but have not been on in a few months. I just wanted to share a little bit in hopes that some of you struggling can see the light at the end of the tunnel!

I know all too well how rough this disease can be…but you CAN get through it! I was diagnosed in 2011. For a few years I was stable with Vancomycin, and doing well. In 2015, my life took a sharp turn when I came down with cancer. I beat the cancer in 2016, but the chemo destroyed what was left of my liver in the process. Twice, they stopped my chemo and were going to let the cancer run it’s course because I was so ill, but luckily I limped along.

After my chemo, I needed a transplant bad, but they wouldn’t list me because normal policy is you have to be cancer free for 5 years before they will list you. I couldn’t make it that long. My doctors fought hard for me, and got an exception saying I could be listed if I could make it 1 year without the cancer returning. I did, and one year later, I was at the list… immediately at the top because I was so bad.

A few months went by, and I took a sharp decline. I was actually in ICU already when an organ became available. They almost didn’t do my surgery because I was so sick.

Luckily, my doctors gave it all they had, and I made it. I’ve been cancer free for 4 years, and had my transplant over 2 years.

A few months ago, we just had our second child! I was back to work 3 months after my transplant, and haven’t missed a day of work since! I’ve changed very little of my lifestyle. I take 2 medications 2x a day, I have blood tests every 3 months, and see my doctor once a year. I’m healthy as can be, very active, and I feel better than I have in 10 years!

For all of you suffering through this terrible disease, just know that there is hope, and it can get better! Just have faith and take it one day at a time!

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Frank,
What a wonderful testimony of your fight with PSC, cancer, etc. I’m so glad you got your life saving transplant and are doing well. Congratulations on the birth of your second child. I know your post will be an encouragement to others.

I’m celebrating my fifth year since transplant this month. What precious gifts we have been given.

Mark

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Thanks for sharing, Frank.
Glad you made it through those struggles.

Mark, has it been 5 years already? I have to stop blinking.

Jeff

Yes, 5 years has gone by so fast. Seems like yesterday. Trust you are doing well Jeff. One of my biggest challenges post transplant is controlling my weight. Being on Prednisone for a year after transplant really caused a lot of weight gain and I just can’t seem to get it down to a comfortable range. Was 212 this week. I’d love to be back down to 185. Wishful thinking maybe.

Mark

Mark,

I have put on a few pounds as well. Not too much, but about 15-20 more than I want. This Covid stuff isn’t helping.

I’ve recently started biking…and it’s helping. That and cutting some of the carbs and eating more veggies.

Pre transplant I was down to 138 lbs…so I’ll take a few extra pounds over that! I’m 200 now.

Wow, I‘m so glad you are feeling good now, after you‘ve been through so much. It‘s really inspiring.
Congratulation on your second child.

1 Like

Thank you for sharing, Frank! I know your story will touch many people and provide that much needed encouragement. Cheers to living your best life and your new bundle of joy!

Frank,
Each day seems to grow darker and tragic with all that is going on in the world. It is easy to isolate and allow depression and negative thoughts malnourish us. With daily breath comes the question of our mortality, this grim environment doesn’t foster hope…however, your story does. Thank you for shining a light on an experience that will make some of us feel less alone – sunlight is the best disenfectant. Please continue to updates us on your health and happiness of your new life.