Susan’s Story

Site created on August 30, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.


I was diagnosed with Idiopathic Pulmonary Fibrosis  (IPF) in January 2014. It is progressive, untreatable illness in which the lungs turn into scar tissue for unknown reasons. It has a mean survival rate of 3-5 years and an unpredictable course. I was very fortunate to be relatively stable for four years, other than needing to learn to tolerate/manage the feeling  that a shoe could drop anytime.  In January of 2018, shortly after I retired from the therapy work I’d loved and just when I’d hoped to start more painting,quilting, playing with grandkids and traveling with Kim, that shoe came crashing down. I’ve been on O2 since then with steadily increasing limits on what I can do. In July, kim and I agreed with my pulmonologist that it was time  to pursue getting a lung transplant in the hope that I might have a few more years with all of you I love so dearly. 


I just finished the University of Minnesota Hospital's "hell week" of testing for suitability for transplant. Neither Kim nor I has ever been though anything like it.  She was by my side every step of the way as they drew blood (19 vials,) x-rayed everything there is to x-ray, did an angiogram and another procedure in the Cath lab, and tested my GI tract with  tubes down my nose.  We also attended lots of classes about the transplant process that included discussion of every problem that does or might occur with transplant. Both Jen and Cassie were able to attend the meeting with the transplant surgeon. At the "wrap up" session on Friday, we were told that the tests results that are back look good.  The transplant committee was scheduled to meet today, but we haven't heard anything from them about whether they will list me.  We will let all of you know when we know anything.  Susan


 
 


 

Newest Update

Journal entry by Cassie Bonstrom

Hi Everyone, 

Many of you have asked how to help us during this difficult time, and while we have taken some of you up on grocery runs or food deliveries when we need them, I finally have a request for ALL of you (who feel comfortable doing it).  

We'd love to compile some memories you have of my mom. She knew so many people in different "circles," and we'd love to hear how she impacted your life. Or, if you didn't know her personally but only read/heard/learned about her through me or Jennie or Kim, let us know how she inspired you or affected your life. 

I know some of you reading this might be having heart palpitations just thinking about doing this, so if it raises your blood pressure in any way, do not feel obligated to participate. But we thought it would be fun to put something together for the service, in a PowerPoint perhaps, and then afterward I can make it into a book for our family. Then, when we need a good laugh or a good cry (or both), we can open it up and feel the love. 

You can send me something handwritten or by email. It doesn't need to be novel length. Even a simple word or phrase will do, if that's all you are comfortable doing. If you have a photo that you like, we'd love to see that too! You can send me a copy (let me know if you want it scanned and returned) or you can just scan it and send via email. 

Cassie Bonstrom
5036 Bedford Avenue
Edina, MN 55436 

My email is cassie.bonstrom@gmail.com 

At the risk of sounding like an English teacher, here are some prompts:
 
What is your favorite memory of my mom? 
What activity/hobby/memory did you share with my mom? What did you guys do together? 
Share a funny story about my mom
How did she inspire you? 
What did you learn from her? 
What did your friendship with her mean to you? 
What about her made you smile? Or laugh? 
What piece of advice or wisdom did she share with you? 
What will you miss most about her? 
If you didn't know my mom personally, in what way did you feel connected to her and/or her story? 

Hearing answers from you all will give us so much comfort (and hopefully some good laughs) and remind us over and over again the impact she had not just on our family, but in the lives of countless others. 

There is no "deadline" per se as we won't be having the service for several months, but I wanted to ask everyone now while she is on everyone's minds, and perhaps while the memories are so fresh. Thank you in advance. Love to all. 

Cassie


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