Robin Hoff - Support Her Transplant Journey

Hello Hoff Supporters, this is Kelly - one of Robin's sisters - setting up this opportunity to support Robin and Jerad as she quickly and optimistically approaches her life-saving double lung transplant. As many of you know, it has been an almost 20 year path she has traveled, but the journey is not over - it is never "over" for a transplant recipient. As with many medical journeys you never know where the road may lead and what is around the corner, so we want Robin and Jerad to have as much emotional and financial support and security so they may focus their efforts where it is most important – on their physical and mental well-being.

 

Nearly 20 years ago Robin collapsed at school where she was teaching and was taken to the nearest hospital, where she learned she had Primary Pulmonary Hypertension (they’ve dropped the word “primary” over the years). There is no known cause and no known cure. Overly-simplified, her lungs constrict the blood flow from her heart, so she doesn’t move oxygenated blood as much as she should and it’s damaged her heart in the process. She also received a very pessimistic prognosis.

 

Robin and Jerad decided to seek specialists at the Mayo Clinic. Instead of telling Robin her life was essentially over, the Mayo made no grandiose promises but said if Robin worked hard, she’d gain some normalcy in her life again. She was placed on the transplant list for both lungs and a heart yet thanks to Robin’s tenacity and the Mayo’s expertise, by the time Robin’s name floated up near the top of the list (at that time based on number on the list versus need) they removed her from transplant consideration. She was just too healthy to get new (to her) organs.

 

Twenty years later the Mayo’s prediction has partially come true. Robin’s lungs are to the point that all of the various medications that Robin takes to combat this disease are maxed out yet Robin’s health has continued to decline. She had to resign from her teaching career earlier this year and focus solely on this journey and her health.

 

These days, most transplants are based upon need, not how long you’ve waited on the list. The first hurdle is proving you’re sick enough that you need a transplant, but healthy enough that gifting you the rare resource of a donated organ will be worthwhile. Robin went through 4 to 5 days a week of testing for the past month as part of her evaluation. She was approved for double lung transplant with serious consideration within the committee to replace her heart as well due to the damage her heart as sustained so far.

 

Robin is currently in the hospital waiting on her double lung transplant, and is at the top of the list. We are hoping it will be a few short days before the right donation match is made.

 

With that comes the recovery, and the unknown. Robin and Jerad will continue to encounter medical bills, medication co-pays, incidental costs (parking, meals, gas), lost income, and seeking ways to make their lives as stress-free as possible. Many people want to “help” but don’t know how, or have the proximity to easily assist in the day in the day – so I am setting this up to help them with these unknowns. Jerad and Robin will have complete access to these funds and control where they are used.