Hold fast to hope: Meet @my44

ROSEMARY: What brought you to Mayo Clinic Connect? 

@my44: For years I had turned to Mayo Clinic’s website when looking for accurate and trustworthy medical information. I found Mayo Clinic Connect a year and a half ago while researching kidney disease. I had been diagnosed with stage 4 chronic kidney disease which was declining and heading towards dialysis. My nephrologist recommended that I be evaluated for a kidney transplant but, frankly, I thought I was too old and too sick to even be considered. But I was evaluated, approved, and listed with UNOS for a kidney transplant which, amazingly, I received less than four months after being listed. 

I am now just over one year post transplant. I wanted to be part of a support group, and Mayo Clinic Connect fits the bill. I’m so glad I found it.

ROSEMARY: What motivates you to take part in the community?

@my44: I’m motivated by the wide array of topics, information, and member experiences. Mayo Clinic Connect has been a great resource for me, and I can always find helpful information on every subject that I research. It is one thing to get information from doctors who have not walked in my shoes, but there is nothing like hearing from others who share the same or similar experiences as I do. I find that to be invaluable. 

I’ve learned so much and been helped tremendously by members’ posts, especially those of mentor @rosemarya who has been on this transplant journey longer than I have. I also appreciate the opportunity to share my experiences with others and to help, encourage, and support them.

ROSEMARY: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?

@my44: When I first joined Mayo Clinic Connect, I just read the various posts. It took me almost a year before I posted my first comment, and it wasn’t even about my health. I soon stepped outside my comfort zone and began sharing about my health issues. I appreciate the openness, transparency, and sincerity of the members, mentors, and moderators. 

I feel accepted and cared about. I see Mayo Clinic Connect as a safe judgment-free zone. This is significant because I am, by nature, a quiet introvert who is normally uncomfortable sharing and being open about myself. But much to my surprise, I have found it rather easy to share openly on Mayo Clinic Connect.

ROSEMARY: What support groups do you participate in?

@my44: I participate in several groups but am most active in the Kidney & Bladder and Transplants support groups. Although I deal with multiple health issues, my kidney health has taken priority over all of the others. My other health issues must always be looked at and treated based upon how my kidney will be affected. One thing I can tell you, though, from my own experience and from reading the posts in the Kidney & Bladder and Transplants groups is that kidney disease and transplant are not easy journeys. But I have met some strong, determined, courageous people in these groups. They are superheroes to me.

ROSEMARY: Tell us about a meaningful moment on Mayo Clinic Connect.

@my44: I’ve had so many meaningful moments on Mayo Clinic Connect, but let me tell you briefly about five of them.

1. My kidney failure developed because of an autoimmune disease called sarcoidosis. I had never heard of sarcoidosis causing kidney failure and did not know anybody else with the same diagnosis. But I found a thread on Mayo Clinic Connect titled “Sarcoidosis: Kidney Failure because of” originally posted by @454june3736 in February 2024. Wow! I was floored to find a thread so specific to my issue, and to know that I was not alone.
2. After my kidney transplant, I named my new kidney Maisha (which means life). I thought I was the only person who named their new organ. But to my surprise, @scottij told me that he had named his new kidney and @gingerw informed me that her husband had named his.
3. I had the opportunity to share my story on the “Organ Donation and Transplant: What is Your story?” discussion. And because I am so involved with the here and now of my transplant journey, I found it therapeutic to take a backwards look at my journey through the rearview mirror.
4. Sometimes the lines between ourselves and our illnesses get blurred, and we seem to become one and the same. But @jackiez reminded me that “my transplant influences me, but it doesn’t define me.” I am not my kidney transplant. I am more than that.
5. Just recently @runninglykos told me that I feel like one of her mom’s hugs. How special is that?!!! It made my day.

ROSEMARY: What surprised you the most about Mayo Clinic Connect?

@my44: I was pleasantly surprised by just how much the members sincerely care about and support each other, and their willingness to candidly share their experiences in order to help others. I appreciate the transparency. Every day I meet health-challenged heroes on Mayo Clinic Connect. Every day I’m inspired by someone or by something I read in a post. I consider myself fortunate to be surrounded and embraced by such a caring and supportive online community. The members have become my friends.

ROSEMARY: What energizes you, or how do you find balance in your life? 

@my44: First and foremost, my faith. Also, hope, and friends and family who show me so much love, energize me and bring balance to my life. So does gratitude. I am grateful for every day that I wake up, because it’s not promised. 

I am also energized and find balance in my life by helping others, thus taking the focus off of myself and my situation. I enjoy encouraging and supporting people…helping them to find hope, even in dire and seemingly hopeless situations. I attribute that, in part, to my having been a hospital chaplain, to my patient advocacy, and to my involvement in bioethics (as it relates to medical practice). 

I tend to be an optimist and a spreader of hope. And while I acknowledge that there are negatives in the situations that many of us face, especially as far as our health is concerned, I make it a priority to embrace and accentuate the positives, because I believe we all need healthy doses of positivity every day to help us forge ahead on our various journeys. Fyodor Dostoevsky said, “To live without hope is to cease to live.” I don’t agree. A person can exist without hope; but, for me, that would be a miserable existence. To paraphrase a Langston Hughes quote: Hold fast to hope. For if hope dies, life becomes a broken-winged bird that cannot fly.

ROSEMARY: Tell us about your favorite pastime or activity.

@my44: I like solving crossword puzzles as well as word and number puzzles. That’s my attempt at keeping my mind sharp as I age. And I love music, dancing, learning, and teaching. I also like to laugh and make others laugh. So, I tell jokes. But everybody laughs at me, not with me, because I just cannot keep a straight face or deliver a punchline correctly! So, I guess I’ll never be invited to appear on Comedy Central. (LOL)

My favorite activity is international travel. I first fell in love with it when I began traveling internationally for my job and did two short stints working in London, England. I love visiting and experiencing cultures and environments that are different from the U.S. I’ve traveled to four continents and about 25 countries, so far, and still have several more on my bucket list. Believe it or not, I have over 7600 pictures and videos, most of which are from my travels, internationally and in the U.S. The picture at the top of this interview is a picture of my family trying to find our car after the last snowstorm. Just kidding! (LOL). That’s actually a picture of my travel group heading into the world’s largest ice tunnel located in the snow-covered Langjökull glacier which is Iceland’s second-largest glacier. This was one of my favorite adventures.

ROSEMARY: Do you have a favorite quote, life motto or personal mantra?

@my44: I have three:

• Love one another.
• Do all the good you can, by all the means you can, in all the ways you can, in all the places you can, at all the times you can, to all the people you can, as long as ever you can.
• God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

Can you imagine what the world would be like if everyone lived out these three quotes?

ROSEMARY: Puppies or kittens?

@my44: I have been afraid of dogs all my life. But over the past year or two, after seeing several of my neighbors’ cute puppies, I have managed to slowly become less afraid of puppies (but not big dogs). 

The picture on my profile, which several members have asked me about, is an avatar that I use in recognition of how far I’ve come in overcoming my fear of puppies. I now think they’re cute, but I don’t own one…yet.

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