Susan’s medical journey

This is one of the hardest post I will ever make. While I have shared a lot of my story since surgery I have not talked about the challenges Zach and I have faced the past 4-5 months

I write this post as I ask for your support. On April 10 I had major surgery that was supposed to dramatically improve my quality of life. Instead my quality of life has rapidly declined in ways I never could have imagined.

I lost my ability to eat and am 100% reliant on iv nutrition called TPN. I have an Ileostomy that does not function unless I put a Foley catheter in it. I deal with bag leaks. I have had multiple line infections and dealt with sepsis. I deal with bowel blockages and electrolyte issues. Most of my days I am in the hospital. Watching my world become something I never imagined.

A few weeks ago Zach and I decided that we would pursue a few options and if those options did not help me I would go on hospice. It has been a very difficult time for us as we talk about end of life accepting my life is not living. It is a painful existence that no one should endure.

Zach has been there every step of the journey. His love never wavering. We have not made this decision easily. It has been talked about for well over a month as we have watched my health decline.

We both know I have fought as hard as possible and sometimes fighting is not enough.

However 3 possibilities exist and we have chosen to pursue them so we can both know we did everything possible. We hope we live to tell a story of how we overcame the most challenging time a couple can face.

I will be going to Cleveland clinic to have my surgeon revise my stoma in August. She is not hopeful but it’s an effort.

In September I will be going to the Mayo Clinic for an extensive evaluation and see if they can help.

Finally in November I will go to the transplant program in Nebraska for an evaluation.

All of this cost a lot of money and we struggle to ask for help but recognize we need it.

We are hoping for the best but planning for the worst. We are spending more time together and trying to cherish however much time we have left. Any support would be appreciated as we navigate uncharted waters.

We haven’t made public what is going on because there is a great deal of sadness in the choices we are facing. The people closest to us have watched me fight for years and only to keep losing the battle.

There are no words to articulate what my illness has taken from me and Zach but we both know we have done the best we can.