Susie's Beautiful Letter

Twice during the past 18 months of dialysis, I have drafted a letter to friends and family, asking for their help in finding a kidney. Both times I have only sent the letter to Susie, who donated one of her kidneys to her friend Ron last summer. The first letter, Susie said, was too soon, as I wasn't yet on the transplant wait list. The second I sent to her two weeks ago.

Susie read my letter and said it was filled with a lot of facts about kidney disease, but it didn't show the "wonderful" person I am. She offered to rework it. Well, she did much more than an edit. She completely scrapped it and put together the beautiful letter that follows. I am so grateful for Susie's kindness and support.

Please read the letter with an open heart and an open mind. Susie quite literally saved her friend's life, and you never know, someone who reads this--perhaps someone you send it to--may be inspired to save mine. You can contact Susie via this blog. Thanks so much for your time.

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Dear Heidi,

I have been thinking a lot about you over the last week. My friend Jim Crumby was killed in a motorcycle crash on August 6th, he was 53 years old. It was shocking that someone so young would just be gone, leaving a son. Yesterday I went to his funeral and spent the day remembering him with his family and friends.

I'm thinking of you lately because your situation is similar. It may not be happening as quickly, but it's still happening.

Truly I don't want to be negative or dramatic, because you know I believe/know that you will get a kidney transplant, but I also wanted to acknowledge the struggle that you are experiencing and tell you that I feel a level of dread when I think about your future if you don't get a kidney. No one wants to watch someone die.

You do a great job of not dwelling in this reality and, in fact, you have been amazing in your tenacity with regard to getting yourself on the transplant list - going through open heart surgery could have killed you, but it didn't. Instead you are doing better and better. The setbacks you experienced earlier this year with the falls and broken bones might have discouraged, or even ended it for someone else in the same situation heath-wise, but you just kept going.

You truly are the unsinkable Heidi Nye.

I think that because Janet has offered to donate it might seem to others that you are out of the woods, but you and I both know the reality is that you need a kidney from a donor with O positive blood type. A paired donation is still available and possible, but it is not a foregone conclusion.

The facts are that you are one of 85,000 people waiting for a kidney in this country and because you have O positive blood your wait will be longer as that is the blood type that can give to anyone.

That puts you at the literal end of the line.

You have been on dialysis for 18 months already and although it may seem that one can live forever on dialysis that is not true, the reality is that dialysis doesn't do much more than clean toxins from the blood, it doesn't provide the hormones or electolyte balance that are necessary for true health. The average survival time on dialysis is about 5 years. This means that you will continue to have health issues, which means that you may be removed from the list if you decline in any way.
Although this reality is grim you continue to live your life to the fullest, traveling to Paris and to your cabin in Nova Scotia. You persevere through the medical system, advocating for yourself in a way that amazes me. You do everything you can to keep yourself healthy and you hold on to hope that the kidney will come. You remain engaged in the world, writing, serving on the board of the Alliance for Organ Donor Incentives, being open to a loving relationship and, as always, you continue to be a great mother and friend to your son, Aaron.

I'm writing this to you because I want you to know that I understand just how dire your situation is. I hear you when you share with me how discouraging all of this is and how alone you feel and you have every reason to feel that way.

I want you to know that when I share with people about donating a kidney to a friend (or as I think of it - participating in a miracle) I also tell them about you. My hope is that you will share this e-mail with your friends and acquaintances so that they can share your story with their friends and acquaintances. My prayer is that there is someone out there who may feel moved to donate, as I was, and that they would donate to you and change your life.

I know this is possible because your neighbor Janet has already stepped up although she was not a match and it didn't happen, it opened the door to possibility.

While living donation may not be something that most people would consider doing, they CAN sign their donor cards. No one likes to think about dying when they are young and healthy, but if it happens becoming a donor can create a blessing out of a tragedy.

I am always available to answer questions about living donation and my experience being a donor so please feel free to send anyone who might be interested my way.

Hang in there - love you,

Susie

Not Another Cold!

For the past few days, I've had a sore throat, sneezing, and now chills. Right now it's the end of a sunny, warm day, and I'm sitting inside with a jacket and a winter coat on--and I'm still cold. I also have been having low-level nausea, fatigue, and weakness. Not sure how I got this cold as I don't recall being around anyone who was sick.

I spent five weeks in June and July with an ongoing cough. Had just gotten over that, and now this hits. UGH!