Hey Everyone, It’s Bo here.
I’ve got something to tell you that is not easy for me to share. For some of you, it will be the first you’ve heard about it. Some of you know a little already. Very few know the whole story.
So, here goes …
A couple of years ago, much to my surprise, I was diagnosed with type 1 diabetes. It was quite a shock, but with a few dietary changes and medication, I’ve done well keeping this under control.
Then, in 2018, during a routine exam, my doctor, quite by accident, found a spot on one of my lungs. It turned out to be early stage lung cancer.
I was lucky.
We caught the cancer so early that it was able to be removed completely, along with a piece of my lung. I did not have to have chemotherapy or radiation, and after the surgery I was cancer free. I recently had my one-year checkup in with my surgeon in November 2019 and thankfully, there are no signs of cancer anywhere.
I didn’t tell many people about my health problems because, quite frankly, I didn’t want the attention. I hate being the patient. I come from a family who does not talk about their problems. I thought I could just get through it quietly, then move on.
Thankfully, I did have Paul by my side. He was extraordinary throughout the whole experience, even while dealing with some health problems of his own. I don’t know how I ever got so lucky.
My Current Situation
Now, I have an even bigger problem, and it is not one I can keep quiet about the way I was able to with the lung cancer. Which brings me to the reason for this letter.
It seems the diabetes, while it was untreated, did a number on my kidneys, and now they are failing. My doctors have advised that the best course of action for me is a kidney transplant. My kidneys have been deteriorating slowly. Right now they are functioning at around 16%, though we do not know for how long this will be the case.
The good news is, they have stayed at this level for over a year now, and I have not experienced any symptoms apart from mild fatigue. My kidneys will continue to decline but I am hoping they will last long enough until I can have my transplant.
Because I must be cancer free for two years in order for surgeons to operate, I have to wait until at least August 2020 before I can receive a kidney transplant. So, if my kidneys decline any further before then, I will need dialysis – something I want to avoid as much as possible. Transplant recipients who do not go on dialysis prior to their operation report both better short- and long-term health outcomes.
I am currently registered and active on the United Network for Organ Sharing (UNOS) list along with over 100,000 other hopeful kidney transplant recipients. The waiting list for the Boston Metropolitan region is 6 – 8 years. Even if I could last that long, I would most certainly be on dialysis for years prior to a transplant, and a deceased donor kidney does not last as long, and can present extra complications. Therefore, a kidney from a living donor is considered my best option.
Now, by far the hardest part of all of this is that I have to rely on someone giving one of their kidneys to me. I mean, how do you even begin to ask someone for a gift like that? I don’t even know where to begin or how to ask, so I am just putting it out there into the universe.In order to continue living, someone needs to graciously offer to donate one of their kidneys to me.
How You Can Help
I would imagine this is something you have never thought of doing. I know it is a big ask, and it is okay to say no. I don’t want anyone to feel pressured, or to feel guilty in any way about this request.
However, I do need everyone’s help.
I need you to become my ambassadors and help me get the word out. I need you to help me find the person who feels called to donate a kidney, and sees this as the right choice for them to make. I do believe they are out there, and I believe we are going to find each other.
In the meantime, I would like everyone to please visit the National Kidney Foundation’s page on kidney transplantation at kidney.org and read up on what it takes to be a living donor. Those interested in applying to be my donor should visit the page “How You Can Help” to get started.
Perhaps being a living donor is not right for you right now. That’s ok. Consider being a deceased donor. Visit the Health Resources and Services Administration’s page organdonor.gov to register and learn more.
Before I started this journey, I had no idea what a tremendous need there was for organ donors, living and deceased, and I’ve learned a lot in the process that I knew nothing about before. For example, through the Kidney Paired Donation program, people who not a direct match can be paired with another pair instead of donating directly to each other. There’s also several factors that make someone a match, so don’t rule yourself out too quickly just because of your blood type!
I hope that by me being honest with you about my situation, you will feel compelled to help others who are going through the same thing.
Staying Kidney Strong
Thank you for taking the time to read this to the end. You can’t imagine how hard this has been for me to make such a big ask, especially from people whom I love. It has been quite a humbling experience, but I am very grateful to have such great support by my side, and am inspired to give back to others with kidney disease, even while I am still on my own journey figuring all this out as I go.
Please, no pity or sympathy. I am a very lucky guy. Other than this kidney drama, I am doing great! I’m married to the man I love. I’ve got a gorgeous life in my most favorite place on earth, and I have two absolutely perfect kitty cats.
Send me a dirty joke. Send me a funny pic. But please, nothing sad. This is going to work out. We just have to find a kidney for me.
Please keep me in your thoughts and prayers.