fbpx

Waiting to Live: Sherry Johnson's Story

Follow Sherry’s personal blog about her wait at Michigan Medicine for a heart/kidney transplant.

Sherry Johnson learned during the summer of 2023 that she needed another transplant to live. She was one of more than 100 patients waiting for a heart in Michigan and one of about 2,400 waiting for an organ transplant. She later learned that she also needed a kidney transplant. After 76 days in the hospital, the 52-year-old wife and mom from Farmington received both from a single donor on two separate days.

Sherry generously shared a daily blog she composed from her room while she waited at Medicina de Michigan in Ann Arbor. It is equal parts inspirational, funny and heartbreakingly real.

Sherry has given Gift of Life permission to tell her story to its completion, and it continues here with a new blog about her recovery and what comes next.

Our teams at Gift of Life Michigan, and other organ donation programs across the nation, work hard every day for Sherry and for the more than 100.000 pacientes like her who continue to wait for their lives to be saved. We're happy and relieved that Sherry's story has a beautiful ending, thanks to a generous donor and their family.

Post-transplant messages from Sherry

Day 27 post-transplant

I’m home and as I approach Thanksgiving I have so much to be thankful for.

I have so many people that have touched me during this journey: Some old friends, some new ones, and even strangers have been a crucial part in getting me through this.

I first start by thanking God, my donor and the family.  This gift I received will be cherished with love, gratefulness and respect.  My donor and I are bonded for life.  As with my first donor, Sue, we will always be connected in a way that I will never be able to put into words.

It’s just a strong, connected bond that I cherish and embrace.  I’m thankful for my family and friends who thought about me every day and made sure I felt their love and support. I needed it and I felt it.  Thank you to my parents who came to see me at Medicina de Michigan every day so that I would have someone to visit.  Oh, how our relationship has changed.  I learned about family history and stories that I’m glad I didn’t miss out on. I’m thankful for my dear husband Tim and the boys, Nick and Hayden - how your strength, love, and visits brightened me up and made 96 days away from you even possible.

I’m grateful for the staff at Michigan Medicine who made me feel like I belonged. I made new friends and enjoyed their kudos when I walked the halls.  How does one thank the surgeons and transplant teams who also saved my life? I think their answer would be, “By living it!” Challenge accepted! Finally, the silent miracle workers at Gift of Life Michigan, the ones behind the scenes that you don’t even know about. Their focus is getting you a new organ so you are healthy. Because of all of you, I have made it through this and I’m now at home.  What a wonder Life it is!

I look forward to my next chapter.  I’m sure there will be camping, dog walks, coffee with friends, and yes, hospital appointments. I’m hoping my dear friends at Gift of Life will keep me busy so that we can continue to spread awareness about organ donation.  Wishing you all a very Happy Thanksgiving and holiday season.

“I love you, I’m grateful for you, we will do great things together.”

Sherry Johnson, who recently received a heart and kidney transplant, sits below a sign saying "GRATEFUL" in her dining room.

Night 21, 96 days since admission

It’s official.  I am HOME.

Couldn’t help but tell everyone I passed on the way to the exit that after 96 days, I was heading home.  People were so happy for me that they were clapping.  Like a little kid, I just couldn’t control the excitement. Thank you, Michigan Medicine!!!!

Pulled up to my house at around 6 p.m. and was greeted by signs of love, support, and joy.

Welcome Home Sherry signs. Hayden greeted me with a big hug.  Tim kept looking over at me in the car, surprised that I was in the seat next to him.

LEWIS remembered me and fell right into my lap.  It couldn’t have been any better.  He already follows me around everywhere, and it’s only been an hour.

We are heading right back to U of M tomorrow morning for a 7:15 appointment but all is good. They suggested I stay one more night since I had tomorrow’s appointment, and I was like, “No thank you”.

Now is where it all begins.  Tim mentioned that three weeks ago, I was the farthest from this point. We’re sitting all together at a dinner table, eating homemade soup.  Until tomorrow.

Sherry Johnson is wheelchaired out the front doors of Michigan Medicine with her arms raised up in triumph and excitement after her heart and kidney transplant.
Sherry Johnson stands behind a large red balloon display with the words "Welcome Home Sherry" hanging, holding a giant teddy bear, after returning home from her heart and kidney transplant.
Sherry Johnson snuggles on the couch with her little dog, Lewis, after she returns home post- heart and kidney transplant.

Day 21 post-transplant, 96 days since admission

As I sit in my room waiting for the final steps to discharge, I remain very cautious.  Yesterday, I thought for sure I was going home, and it was a bit of a blow when I didn’t. So today I’m not anticipating discharge until I’m in a wheelchair heading toward the exit doors.

With that said, I have my bed organized with all my items to go home. As you can imagine, I am very excited to move forward with this new strong heart and kidney. I was up this morning and already walked over one mile before breakfast. I’m on fire to move, move, move.  Enjoy the day, whatever it brings.

I think of my donor today, and together we will bid farewell to this portion of our journey:

 

A recipient’s promise to her unknown lifesaving hero

96 days living within the halls of Michigan Medicine.

On day 77, I got word that you will rescue me. 

You gave your life, to give me mine. 

How does one honor such a person who would do that for me?

I will protect you, love you, cherish you, and do all I can to hold on to you.

Together we will do great things.

Day 16 post-transplant, Day 91 since admission

I have a goal of 10 laps today. That will be a total of two miles. One lap an hour for 10 hours.  Totally doable, so let’s go.

I washed my hair in the sink this morning.  Yahoo.  It feels so good to have a clean scalp.  Sleeping continues to be an issue. However, I can renovate a house on a budget, or I can find a new one since HGTV is the big midnight show here in the hospital.

Still working on getting some of my levels adjusted but things continue to move in the right direction. Anyone who has ever been on steroids probably remembers the appetite you get, so I have begun stockpiling for snacks throughout the day. Everything is measured and I’m only allowed certain items. I have strategically ordered so I have snacks to get me to my next meal.  Sounds funny but true.  Currently, I have a clementine and almonds on standby.

My parents will be coming this morning.  They rarely miss a day to come by.  Yesterday, with my biopsy I asked them to stay home but that didn’t stop them from calling and checking in several times. I want Tim to take today off because he has been coming every day.  I doubt he will skip but if you happen to run into him today, help me encourage him to take a day to himself.  Love to all.  Enjoy your day.

Day 15 Post-transplant

Today is another biopsy day. They grab several samples of my heart to review for rejection. The procedure hasn’t changed since my first transplant, so I know what to expect. They removed my wound vac yesterday and my incision is now open to air. This also was an added tube to have to maneuver around, so with it gone I am now down to only one connection to my IV pole. Sleeping has been an on-and-off struggle for me. They wake me up at 3 a.m. for a blood sugar check, and the steroids keep me up from time to time. Otherwise, it is so quiet and the sounds coming from my IV are now background noises that I don’t really pay attention to anymore.

Still working on getting some remaining fluid off but that is to be expected. Mentally, I feel strong and positive. These little bumps are nothing of any major concern. The truth is, I would rather stay in and get everything just perfect rather than coming back for minor adjustments.  Have a wonderful day.

Day 14 post-transplant  

Yay, Sleep.  I slept so well.  Getting in and out of bed is much easier now with no discomfort, so laying on my side is doable and proves to be my position of choice.  I hit a few bumps in the road yesterday which is normal in this process of healing.  I had a reaction to one of the meds they administered and some of my lab values are not exactly where they need to be.  They are constantly changing meds around which affects everything else.  Discharge date has been moved to next week but no worries because that light is still visible.

Many of my nurses from 7c have come to visit me in step-down.  Much love, kindness, and special people in the walls here at Michigan Medicine.  My room up on 7c was very homey and full of all my belongings.  This room, I keep to a minimum because I’m going home from this room, and I don’t want to accumulate a lot.  I think I mentioned Tim brought me some yarn so that has been nice to do.

Sherry Johnson shows the stitches on her chest after her second heart (and kidney) transplant at Michigan Medicine.

Day 12 post-transplant

The talk has begun.  Heading home this week is highly possible and most likely.

Driving into my subdivision and seeing my freshly painted house, the trees that line my view, my couch, pictures and Tim, Hayden, Nick, Sam, and Lewis fussing over me is in my near future. Can you believe it?

The Lewis plan: We will have Lewis in the backyard while I get situated on the couch. My bestie purchased a protective pillow that I will put on and then call him in from outside. We are all curious about how this little guy is going to react. We will videotape it for sure and share it. Menu Item requests: Pork chops, mashed potatoes, salad and some light dessert. I would love a big bowl of spaghetti but must watch carbs until the blood sugars are stable. I will most likely be discharged with insulin issues related to the steroids, but this happened the first time too, and will stop once the steroids are removed.

Tim has been working hard at cleaning the house and getting ready for my arrival too.

I have spent many quiet moments with my new donor.  Although there is an immediate bond that forms there is also this slow building one that unravels as I heal and I’m able to focus more on other things.  A deep connection to my first donor will always remain with me. Together we make up a three-player team and everyone is playing one hell of a game. Here is a picture of me doing my laps. Still sassy as ever!

Day 11 post-transplant

I woke up starving this morning at about 4 a.m.

I was so hungry I ate two Jell-Os. For those of you who don’t know me, I can’t stand Jell-O.  Desperate times call for desperate measures and a strawberry and an orange Jell-O were consumed.

It’s quiet here today which is a nice change from all the hustle and bustle during the week. COVID is on the rise, so I am now required to wear a mask when any staff enters the room despite the fact that they are also masked.

I have a wound vacuum which is just what it sounds like: It’s a vacuum that keeps my wound area clean. I also have an external pacemaker which is basically wires outside my body that work internally as a pacemaker. I don’t need any assistance from the pacemaker, but it’s required for now.

Tim is coming today, and I have requested my crocheting project. I’ve missed this little pastime. I hope I can remember where I left off.

Sherry Johnson in her street clothes and crocs, one hand on her hip the other holding her IV pole as she walks around the unit post-heart/kidney transplant

Day 10 post-transplant

Last night was the first since my transplant that I slept more than I was awake.

My IV pole is down to two bags from an impressive unknown number just a few days ago.

My parents will arrive this morning, followed by Tim and Hayden. Can you believe it’s Friday?  I continue to feel stronger and stronger each day. I received a video of my dog, Lewis, being cared for by my dear neighbor.

Lots of miracles are happening this week - this one included. The quick story behind Lewis is that we rescued him from a hoarding situation of over 50 dogs. He was extremely scared and timid, so to see him hanging out like that is truly a work in progress. Cuteness overload!

 

Day 9 post-transplant

I had my first biopsy yesterday and the initial review is excellent. The best moment of the day was when they opened up the doors to go and, in the room across from me, was no other than my new friend from down the hall.

Our eyes connected and we both sat up and said, “OMG is that you?” She looked great and tears were falling. We weren’t planning to see each other until 2024 and we were gifted a quick moment to check in on each other.

I am now independently allowed to walk the hallways so during those insomnia hours, it is so peaceful to walk the halls and reflect on how far I’ve come.  I’m finally viewing my stay with a light at the end of the tunnel to return home.  That’s so powerful. So, get that WELCOME HOME sign the neighbors made for me 17 years ago and displayed in their window.  You keep some things not really expecting to use them again but because you know they meant so much. In this case, it means so much y it will be used again.

Enjoy the day.

Day 8-post-transplant

I flipped another calendar month here at Michigan Medicine but I have a much different perspective than the October flip.  I can’t believe the progress that I have made.

The support from my family, friends, Michigan Medicine staff, Gift of Life Michigan, my donor and their family, and everyone who sent thoughts and prayers.

We did this together.

I’m incredibly proud of my husband, and my sons, Nick (Sam), and Hayden for all their strength, love and for taking care of me these past few months. I’m also proud of my parents who came every day and especially my dad who, well, I’m just very proud of him for hanging in there.

Today, I get my first biopsy, and this will be a weekly routine for a bit. My parents are coming and have been warned to wear their walking shoes because I am not cleared to walk the halls alone yet and I am ready to roll!

I have the same exact view from my new room. I’m just three floors closer to the ground floor.  I can see the trees have changed in color since August 8, I can still see Tim drive by and the helicopter fly-bys.

So much is the same, yet what a different world for me today.

Sherry Johnson sits cross-legged in her street clothes on her hospital bed while recovering from her heart/kidney transplant.

Day 7 post-transplant

Welcome to my first solo post from my step-down room.  Not to toot my own horn (well, maybe a little), but you all would be so surprised at how far I’ve come in just one week.  Thank you all for the words of faith, strength and love you sent my family and me.  I am very grateful for my donor but very emotional about it, so I am planning on opening up about that in due time. Today’s goal is to walk, walk and more walking.  My dad is coming with homemade bran muffins.

Sherry Johnson sitting up on her hospital bed, in a gown with surgical tape down her sternum, and smiling.

Pre-transplant messages from Sherry

Day 76

At around 12 noon today, I received word that a heart and kidney became available for me. Tim was here when the doctor shared the news. It has been a whirlwind of emotions.  I ask that you please take a moment to thank Sue, who was my first heart donor and gave me 17 years of life. I will truly miss her. Also, take a moment for my donor and his/her family as they struggle with the loss and thank him/her for because of them, I will be home for Christmas. Pray for much guidance for the transplant teams and strength and love to Tim and the boys. Much Love to all of you.

Day 75 

I had another pulmonary edema episode last night.

There is this very fine balance between not damaging what is left of my kidneys to a pulmonary edema episode. Although it is tough being the patient, I know it is tough on the doctors and nurses, too. Everyone would like to avoid both situations.  #needaheart/kidney

Nick and Sam came yesterday and brought pumpkins to paint.

It was fun and great to see them both. Oh, and yesterday I did a facial mask.  I try to pick a time to do these things when I think there is a break in the action.

In my head, I map out when the nurse/tech/doctor was in last so that I am sure to have a moment where I won’t be interrupted.

It’s a bit embarrassing to show up with a mask on your face. I failed at my attempt and had to warn the nurse that when she saw me not to be alarmed. I’m trying to do things that will make me feel good and the mask was super fun to do.

Received a special gift from a friend yesterday.  She sent me a bracelet with a little gem and a dog charm. I was instructed to investigate the gem. Inside was a picture of Benson and me. I cried immediately. It’s a super meaningful gift of my dear Benson and me. Thank you, Doreen.

Sharing pictures of the hallway view. Five laps around equal a mile. I was afraid to smile with my mask on. I didn’t want it to fall off.

Enjoy your day!

Sherry wearing a facial mask and giving a thumb's up.
An empty hospital hallway

Day 74

Another Saturday.  I anticipate a big buzz around here because Michigan plays Michigan State. My neighbors will have their house-divided flag hanging from the right side of their garage.

Guess who I got a text from?  My FRIEND down the hall!  She is still adjusting but she is snuggling with her two cats and her dog and she’s so happy to be home.

My daily visits from my doctors tend to get awkward around Day Four. The meeting is always very brief because news doesn’t change from day to day.

Doc: How are you feeling?

Me: Great.

Doc: Anymore pulmonary edema episodes?

Me: No.

Doc: Can I look at your neck vein?

Me: Sure.

Doc: OK, so the plan is to give you more Lasix today, hopefully keep any more of those episodes from happening.  Any questions for me?  Anything I can do to make your stay better?

Me:  No, I’m doing great.

And here it is the moment of awkwardness.  We both just sit in silence for a second or two.  We both know what is coming next.  “Ok, let’s hope today we get some news.”

Day 73 

Having fun this morning with the IV team.

They come every Friday to clean and rebandage my IV.

After four IV changes in just one week, we are now on day 63 with this same IV. This is amazing for the life of an IV and even more amazing because it is pediatric-sized.  The nurses flush it every shift because no one wants to be the nurse on staff if this one clogs. I mean this is a big deal and we should celebrate the little successes along with the big ones. So today, we celebrate!  Way to go, Alyssa.

Looking forward to Tim and Hayden coming today. Nick and Sam arrive tomorrow and, like every Sunday, my parents come after church. Chris, I’m out of muffins!  Enjoy the day!

An arm with an IV and a notebook page that reads "63 Days! Way to go Alyssa!"

Day 72 

Well, she did it.  My friend from down the hall went home yesterday.

It was such a special moment to be part of her send-off.  The staff was clapping as she loaded herself into the wheelchair and headed toward the elevator. She was wearing a mask but her eyes showed us a huge smile. I’m so happy for my new friend.

When my nurse woke me up at 6 a.m. to give me my morning meds, I was barely awake and the first thing I thought of was how wonderful it was for my friend D to sleep in her own bed, in her own house, with her little pets surrounding her.  May God continue to bless her with strength and good health.  Until we meet again, which I know will be sometime in the new year and I can’t wait!

A very busy day for me already.  Woke up, showered, physical therapy and my parents came to visit. Here is an interesting test. How many sit-to-stands from a chair can you do in 30 seconds? I did 14, which, for my age, is a big FAIL. Apparently, I should be doing 22. Most of you know I am competitive so I will be working hard at this, and you bet I will hit 22 the next time I attempt this.

Just got a call from Hayden who is downstairs getting a coffee.  “Do you want one, Mom?” Haha, “Yes, I would love one.”  I’m off to spend time with Hayden. we are now watching The Queen’s Gambit together. Enjoy your day!

Day 71

I believe my friend down the hall gets to go home today.

She has been here since April and I’m so excited for her. We have plans to meet for coffee when I’m out and then do a 5K together next year.  This is the moment we all are waiting for, to leave the hospital and go out and live LIFE.  I will miss her but I’m happy to see her go.  I asked her what she couldn’t wait to do, and she said, see her pets.  I can totally relate.  Mr. Lewis is going to have some major cuddle time with me when I get home.

When I have the same nurses for several days in a row, I really get to know them.  This one has kids, this one has a hard time sleeping, this one gets up at 3 a.m. and works out every morning, this one loves chocolate, this one is an artist and this one is going on vacation.

Think about it, these are my new people. I spend more time with them than even my most frequent guests.  So, it’s weird when you know someone is going away for 5 days or so. I’m not sure if I’ll see them again. In my head, I have often said, “No way will I still be here when she comes back in two weeks from her vacation.”  And there she is, bopping down the hallway and she is back and I’m still here.

My midnight nurse is now off for five nights. I thanked her for all she has done for me, and she said, “I’ll be back.” Then I reply, “I might not be here when you return.”  Even the staff has gotten used to me being here.  Suddenly it clicked and she was like “Oh, yeah.  Let’s hope we don’t see each other when I return.”

Usually, these words are spoken followed by sad separation but, in this case, an Hallelujah Moment that the staff wants just as much as we do. Besides, I will see my friends again and again when I visit 7C under much different circumstances. Until then, TOGETHER we wait for my Hallelujah Moment on 7C at Michigan Medicine.

Charlie Brown holding an umbrella over Snoopy while he eats in the rain, with the caption "Always there for you."

Day 69

Last night I had another flash pulmonary edema episode. I suggest avoiding this if possible. I give it a “0” star rating. This one lasted a little longer, about three hours and of course started at shift change.

However, today is another day and a beautiful day it is.

Oct, 16 was the day of my first heart transplant in 2006. Today I remember my dear donor Sue and her family. We title this my Heart Birthday.  It’s a special day to reflect and celebrate the past 17 years thanks to Sue.

I remember things like taking the kids to Washington, D.C. and the temperatures were unusually warm. We were lucky to see the cherry blossoms without crowds.

And the time when Nick was running in a cross country meet and the course was super muddy. The boys finished with mud all over them.

There was also the time I took Hayden to the neighborhood euchre tournament, and he won first place and he got to take the trophy home.

Then there was the summer we got our paddle boards, and we went out any chance we could. Holly B. was in on that one. I walked along the beach in California with my bestie watching the “neon blue waves” and we bumped into the same feral cat every night.

My favorite was the nights Tim made a fire and pulled out the folding table and chairs and we would eat dinner next to the fireplace. These are the everyday, little things that I got to do. There were also concerts, vacations, achievements, weddings, and new arrivals. The list goes on because 17 years is a long time to celebrate, and it wouldn’t have been possible without Sue.

Take a moment today for Sue. Just a moment to say, thanks! I would appreciate that. Love to all. Enjoy the day.

Sherry Johnson holding 17 red heart-shaped balloons

Day 68

I woke up feeling the energy all the way from Downtown Detroit. I’m tracking both Tim and Hayden who are running the Detroit Marathon. Shout out to whoever developed the tracking app because I’m able to watch their progress and cheer them on from here. Next year, I’ll be back downtown warm and cozy in a coffee shop, watching the same app, but will be at the finish line in person. A special thank you to Jill, Sandra, and Lynn who will be thinking of me today during their run.

A map of the Detroit/Windsor area, showing the location of Sherry's husband and son being tracked in the Detroit Free Press Marathon

Day 67

The gray rainy skies outside my window match my mood today.  I really miss home.  I got up this morning and started my routine. I raise my bed to its highest level and make my bed. I straighten out the sheets in a manner of perfection - no wrinkles, nothing out of place. I do this not because I am particular about things, but because it fills the time. I clean my room, put on gloves, grab an antibacterial towelette or two and wipe down my table, repeat the process again for my refrigerator and my nightstand.  This is the new normal.

Tim arrives and I can’t help it.  I try to fight back the tears, but I really want to go home. He gave me a good pep talk and things were a little better. He does a great job of keeping me together. His role is not easy either. As much as I miss home, he misses having me home and can’t wait for that day to come when he can set up a TV table next to the couch and fetch me whatever my little heart desires.

Changing the subject. A dear friend works for Crocs. You might remember the awesome pair of peanut crocs I received. The nurses love Crocs and my friend sent me coupons to give all the nurses on 7C.  Tim and I were walking laps and there were five nurses around the computer on Crocs.com.  It made us laugh.  Big thank you to my friend for providing that to the nurses.

Hayden is coming later today.  This will surely brighten my mood.

Sherry holding up a handful of Crocs VIP coupons, while sitting on her hospital bed

Day 66

It’s Friday, Oct. 13.

Who knew you could throw an awesome birthday party in a hospital room? With the help of my parents and sister-in-law, we were able to celebrate Tim’s birthday.  It was fun but I think I got the best gift of all. Right outside my room, there is a picture with a sign that says “Shhhh, my wife is healing.”   We just doctored it up a bit.  Gotta have fun!

I hope to see my friend from down the hall today.  We haven’t bumped into each other for a few days. Funny as that is, with her just being a few rooms down.  She has company, I have company and we both nap at different times of the day.  She is doing good and each day I see her she looks better and better.  She is a highlight of my stay here and I look forward to seeing her.

This morning I will get an early morning visit from Tim and Hayden. They are both (and my sister-in-law) running the Detroit half marathon on Sunday.  Today they must go pick up their running packet.  I usually go with them and sometimes we hit a restaurant for lunch. I will miss this little annual event.  I did hear that Lynn is running the full marathon in my honor which, in turn, is for all the donors who have allowed people like me to live.  Thank you, Lynn.

Sherry sitting on Tim's lap on her hospital bed, holding a piece of cake on a paper plate.
Sherry pointing to a photo of Tim almost picking his nose.
Sherry and her extended family in her hospital room

Day 65

Today is Tim’s birthday. We plan on celebrating right here in room 455. His sister will bring in a chocolate cake and red velvet cupcakes (seriously, does anyone really like red velvet besides Tim?), and my parents will bring brownies.  SUGAR OVERLOAD.

This is the second celebration we have experienced here at the hospital. The first was our 30-year anniversary in August.

Tim mentioned a while back how the lyrics to The Whole of the Moon reminded him of me. We would listen to this song in the kitchen while cleaning up together and somehow this just became our song. I found a print with the lyrics and, ironically, it was in the shape of a heart. Purchased and soon to be framed.

Seventeen years ago today, Tim drove me to U of M hospital to wait for my first heart transplant.  I was a much different woman then. It was his birthday, and he was driving me to the hospital with nothing but the thought of me getting a new heart on his mind.

Seventeen years later, he would love for me to get a heart today. The best gift he could ever receive is the gift of life for his wife.  I know this because I see it every day in his eyes when the elevator doors close and he rides down to floor 2 by himself and I walk down the hall to my room, alone.

The day is young, my dear, and anything can happen. Happy Birthday!

A heart-shaped collage of the lyrics to "The Whole of the Moon"

Day 64

I promise you that one of these days when you don’t hear from me before 5 p.m., it will be because I’m busy getting a new heart and kidney.

The view from my hospital window is changing.  What used to be lush trees of green and a community pool of swimmers is now leaves changing and an empty pool. I love the beauty of fall and even though I’m seeing it from seven stories up, it is still as beautiful as ever. There is one tree I watch as its leaves continue to transition from green to orange and soon yellow and she reminds me every day how a change is coming.

Day 62

Go Bulldogs!

I have not been able to sleep for the previous 2 nights. I was very startled by the flash pulmonary incident and I became anxious when I would start to fall asleep. Last night I did great. Deciding to let go and trust in something greater gave me a better mindset and I got a much-needed good night's sleep.

I met a friend down the hall, it was the lady who got a heart a few weeks back. She is recovering. The beauty of seeing someone post-heart transplant also gave me an upcharge of hope. We exchanged phone numbers and plan on walking a 5K together next year to celebrate. I will invite you all to cheer us on because that will be a moment to see. I told her she’s allowed to feel sadness, anger, and frustration because she is only human but shortly after she has to stand up and say, “I am strong, I am powerful, my name is xxxx, and I am a fighter.” We stood by her bed together and repeated those words. I also told her “I love her already!” Friendships can pop out of nowhere and how grateful I am to have a new one.

Day 61

Yesterday was a great day. I felt much better and rested a lot. I’m waiting for my parents to arrive any minute, followed by Tim and Hayden later this afternoon. Looking forward to all the visitors today. I expect it will be a nice Sunday with a little football in the background.

Lewis got into my stuff. He just wants to be my sidekick “wonder dog.”

Day 60

Last night was a bad night.  Flash pulmonary edema again. Staff was busy with me for a couple hours. I couldn’t fall asleep after that. I kept saying over and over in my head “I need a new heart; I need a new heart and soon.”

I thank God for the people who came in and calmed me down when I was panicking and scared. They reassured me with no promises other than they were going to help and that this is why I was here. I want to thank all those in the medical field. Whatever job it is, wherever you work, whatever your title, thank you for saving lives and all the moments in between.

It's morning now and other than being extremely tired, I feel better. There is something about sleeping during the day that feels safer.  Maybe it’s all the activity and interruptions that make you feel less alone than the darkness.  Whatever it is, I’m going to rest because I am here another day.

Day 59 

It’s Oct. 6.  

I was awoken this morning by a soft tap on my door. I thought it was Hayden checking in to let us know he got home OK. It was my nurse, instead, and I immediately started to cry.  I apologized and said, “I thought you were my son telling me he was home and it just hit me”.   

She was so sweet she responded, “It’s OK, I know you have been here a long time.”   

I got a package a few days back from a dear friend. It was a stuffed dog. That little stuffed animal looks just like Lewis. You bet I did: I slept with that stuffed dog like a child sleeps with their comfort blanket.  

Also, Tim delivered a package from work. I’ve never been so excited to work on the bank statements in all my 10 years of working there. I’m sitting here at 6:45, with a cup of coffee and an envelope, and soon the contents will be spread across my bed (just like my desk).   

Day 57 

Well, yesterday was certainly a gift and one I am so grateful for.    

When you are in the hospital for so long there is this community you build, somewhat like your neighborhood. The friends I’m happy to see along my walking route, the occasional dog that I bump into that I just can’t help but smother with love. There is the food delivery that comes three times a day. For some of you, this would be like the Amazon truck. At night they clean the floors which sounds a lot like construction. If you put a little spin on it, it’s my temporary neighborhood.   

Yesterday, there was a patient who I believe is in the same situation as me. She was a little upset about the length of her stay. She just wanted to go home. I know this because for about 20 minutes all you could hear was a plea to “please, take me home”.  

Remember that everyone struggles and it’s the community of people you surround yourself with that help you through. I hope to bump into this neighbor today so that I can tell her how strong she is and that the goal is to get her home. For those of you in my community, I thank you every day for the strength and support I get from you. You lift my spirits every day. 

Day 56   

And just like that, the warrior is back.   

I was granted one hour off the floor to go outside. One hour, 60 minutes, 3,600 seconds I used every moment I had to listen to the sounds, feel the hot sun on my face and go barefoot in the grass.     

I cried the entire ride down the elevator because I was so excited for something I haven’t been able to do for almost two months.   

This was not an easy task to accomplish, because of the policies on 7C.  Someone needs to know how mentally therapeutic it was for me to go outside today. I hope I never forget the joy and excitement I felt today simply by going outside.   

Sherry Johnson, outside on a large, green lawn with trees behind her, arms outstretched and face up taking in the sun

Day 55 

On the struggle bus a bit today.  I think when I get a new rotation of doctors, those first few days can be a bit difficult. We are just getting a plan together and then the new rotation starts with a new doctor, and he/she may have a different view or plan of care. For the most part, the plan is the same but even a small change like medications takes a while to figure out.   

Just when you figure it out, BAM!  New rotation, slightly different approach. Not to mention the calendar just flipped to OCTOBER!  

But I am a wonder woman and will start fresh tomorrow. Today, I am allowing myself to feel a little sad. It is important for me to allow myself to have bad days because this is honesty.   

Not every day is grand and it can be exhausting to try to maintain that level of acceptance, understanding, and gratefulness throughout hard times. So, I will take this day and cry if I want, be grumpy if I need to or even be slightly angry.    

However, I must remember to always let the good things out way the bad before I go to sleep so that tomorrow, I can be a warrior again.   

Sherry showing off her Wonder Woman cape in her hospital room
Sherry wearing a Wonder Woman t-shirt and cape

Day 54 

Big News of the day: It’s the start of Ulta’s Gorgeous Hair event. I have placed my first order and with 21 days to go, who knows what will be coming to the house.   

Just a shot in the dark but if anyone has access to the architects building the new U of M hospital, I have a few suggestions. 

#1 The call light needs to be accessible closer to the door rather than above the patient. Seriously, the staff must have a background in gymnastics to reach that little grey button.    

#2  An outdoor courtyard on every floor. How important is being outdoors for your mental health?  If you can’t leave the floor to go outside then bring the outside to the floor.   

#3  Online meal ordering. I’m not complaining but waiting on hold for over 10 minutes to place an order for Cheerios and a banana might have room for improvement.   

Big News of the day: Hayden has made progress with Lewis.  I’ve been told that he doesn’t bark at him much anymore. Hayden has been a trooper and very patient while Lewis decided whether he was going to let this man walk around his house. There are a lot of treats being given but I think it has finally paid off.  Now the real concern is, will he remember me?   

Day 53 

Good Friday morning, 9/30/23.   

The sun is bright today but the fog is thick so there isn’t much to see out my window.   

Hayden got to go to the Tigers game last night. What a great night for a ball game and to be a part of this Cabrera celebration weekend. I don’t usually watch sports until they get to the playoffs and never football. Now that the Lions are winning, I can’t wait until next Sunday to watch them again. I guess that means I’m not a loyal fan but what the heck, I’ll jump on the bandwagon.   

Nick and Sam came home this weekend. It is going to be hunting season and Nick will be busy. It’s always fishing season and he caught a big one. He was very excited and called me right away. He broke his pole reeling this one in.  

My routine used to be, I would wake up and think “Este is the day.” It is normal to want to think that but for me it would set me up. I would find myself going to bed and not being in the best frame of mind.     

I decided I wouldn’t have any expectations for each day. Each day will be the same until it isn’t. My kidneys will continue strong until they don’t, and my donor will come when she/he comes. Until then, I will enjoy each day, whatever it brings.  And so should you. 

Young man in the kitchen holding up a giant, silver fish

Day 52  

I got to thinking about what I miss at home. Outside of the people and my little dog Lewis, these are some of the unique things I miss. 

The creak in the floor when I step out of my bed, the missing cabinet door in my kitchen, the towel we put by the back door so the dog doesn’t come in and leave prints on the floor, OH the dog’s footprints on the floor, my huge collection of unnecessary shades of lipstick, the front glass storm door with fingerprints and nose prints, going to the mailbox, lying on my couch and falling asleep, catching a bird using the bird bath, the smell of the essential oil I sneak in the glass heart in the corner of the great room, and yes even watching the deer eat my daylilies.   

Some of these I would complain about but today I miss them.   

I can’t wait to do normal stuff, like vacuum, doing dishes, and folding clothes.  Tim reminded me yesterday about how when he and I go grocery shopping together I always wander off.   

He usually has to call me and tell me it’s time to check out. When I return, I usually have a dog toy or something totally unnecessary in my hands. He misses stuff like that. The everyday stuff.    

This wait is hard for the family, too, but together we always come back to how lucky I am to be in the hospital, not needing to rush off to the ER every time, and that I am able to walk around and get cheered on by the staff as I do my daily laps.   

A member of the Heart Failure Team came in this morning and said, “We are all pulling for you to get your heart/kidney soon.”  Everyone who takes care of me hopes that I won’t be here the next time they come in for a shift. Because that would mean I got a heart and kidney and the next time they see me, I will be coming in for a visit and maybe some of those yummy sweets. 

Day 51 

Nancy, my sister-in-law, came to visit me. We did my laps together and had lunch.  Me with my Cheerios, yogurt, and almonds and her with similar ingredients from home.  

I showed her the window where I determine the weather of the day. I usually walk all the way down the hall to 7A and put my hand on the window. I’m able to pick up a pretty accurate guess at the temp outside, and if we are lucky, we get to watch the helicopter depart from the helipad outside the ER.   

Nancy and I ran into my cardiologist. He is a source of calm for me.  A familiar constant in my transplant journey. 

Tim and Hayden both visited today so I’m just getting around to writing today’s update at 6:30 p.m. and I’m ready to head off to bed. So, from my little temporary home on Floor 7C room 455, filled with cards of loving messages, warm cozy blankets and clean sheets, good night, see you in the morning light (NT that’s for you).    

Sherry at a large window decorated for the fall

Day 50  

The big 5-0.   

My parents are coming today.  I am so thankful that they come so often and fill in the days when no one else is coming.  I think they come four or five times a week and I really enjoy their visits.   

Oh, shocker, the pathology department is here to take my blood.  Hold, please. 

I’m back, a tube lighter.  I will say, I was gifted with great veins for daily blood draws.   

I got my flu shot the other day.  Interesting fact, I won’t be able to get any vaccines for six months after transplant.  U of M does not currently have the covid vaccine but as soon as it comes, I will get it.  Also, the RSV vaccine and my second shingles vaccine.  Loading me up for protection! 

I am enjoying being in control of the thermostat in my room.  At home, Tim and I have a difference of opinion on what it should be set at.  There are some pluses to being in a room all by yourself.  But not many. #missmyguys!   

Day 49 

I was hoping for some sun today.  It’s a bit chilly when I touch the window which means it’s chilly outside too.  I slept in quite late today. At 9:30 my nurse woke me up, just in time for an appointment I had at 10 followed by a visit from my dad at 11. I took a long hot shower and sat in on a staff meeting.  Which brings me finally to getting around to writing my daily update.   

I’m feeling very good today emotionally.  I continue to be on the receiving end of great nurses who are assigned to me. I know I keep saying that, but it’s true.  Great, great nurses on 7C.  I put on a little makeup and lipstick today and showered to the tunes of Mr. Brightside by the Killers, followed by some classic Hamilton. Tim brought me my waterproof speaker and I’m so glad he did.   

Just walked my five laps and I’m waiting for my Mr. Brightside, Hayden, to join me for dinner.  We will probably watch a show together called, One Piece.  Tomorrow will be day 50.  I will wake up, stand like Wonder Woman with my hands on my hips and my imaginary cap and say, “Bring it on”.   

Day 48 

I woke up this morning at 6 a.m. to the quiet voice of someone needing to take my vitals, my weight, and give me pills.  Sometimes I can fall back asleep and other times my mind just turns on. Today, my mind just turned on.  I lay there thinking how thankful I am to be in good enough shape to walk the hallways and to be healthy enough to be pleasant to the people who are taking care of me.   

I was gifted a Gameboy classic.  It’s a little handheld gaming system with 300 games. I have mastered all the buttons (3) and how they work.  Now on to gaming.  Look Hayden, I’m a gamer too. I also have plans to work on crocheting, and some other items to keep me busy.   

As for that heart and kidney I’m waiting for.  There isn’t much news.  They will arrive when the time is perfect, and we will wait patiently and gratefully.   

The Heart Failure Team comes in daily.  It’s kind of awkward because neither of us has anything new to say to each other.  The visit has become about 1-2 minutes.  I mean what more can we say to one another than, “How are you feeling?” 

Good.   

“Any discomfort?”  

No.  

“Can I listen to your lungs?” 

Sure.   

“OK, well, see you tomorrow.”  

Yep, thank you. See you tomorrow.   

Just like that, you sat in on my doctor visit today, tomorrow and the next day. Unless! 

Pictures:  Me having my morning coffee by a window down the hall.   Usually chatting it up with Carl, who is from environmental service and my friend.  The other is self-explanatory.     

Sherry holding a Gameboy system in front of her face
Sherry holding a cup of coffee, while wearing a mask in front of the window of her hospital room

Day 47 

Yay, LIONS.  I’ve been watching a lot of football during my stay at U of M. I don’t even watch football, but when in Ann Arbor you do what the people in Ann Arbor do. You cheer on the Wolverines and, apparently, you watch the Lions.   

My new goal is walking five laps a day all at once.  It’s just over one mile.  Of course, most of the staff knows Tim and me and we got a high five from one of the nurses on lap four. The gentleman delivering my food says my room is his favorite. Tim has been very helpful in making it as homey as possible. He is constantly taking my laundry and bringing me clean clothes and blankets.  I have all my cards taped on my wall.  They’re a reminder of all the beautiful people in my life.    

Day 45 

Whenever I post a day ending in 5 or 0 it seems to hit me more like, “OMG, you actually have been here 45 days”.   

Squeezing in this post before my parents visit.  They have been coming several times a week and it gives us some time to talk about some family history.  I’m learning a lot about my family and where I get my strength from.  My mom, of course, the little 4’11’’ Italian lady who really gave me my strength and still does. My brother continues to watch over me and makes sure I laugh and I’m kind whenever I can be. My aunt is independent and confident and has been since she went to California at the age of 18. She has always been willing to try anything if it looked like a good opportunity. My dad and Chris push everything aside to visit as often as they can and make sure I know how much they love me.   

Last night was The Glow, which is an annual fundraising event for my company’s non-profit.  I woke up this morning to some pretty amazing co-workers/FRIENDS making sure I was still part of the event.  I was very touched that they did that for me. What a great team at GHSN. 

I have good people all around me.  #oneluckygirl 

Man and woman holding up a photo of Sherry's face
Woman holding up a photo of Sherry's face

Day 44 

I had a nice surprise yesterday.  PT came and took me into their room.  I got to do the nu-step for 25 minutes and I rocked it.  I have been very tired lately and she arrived just as I tucked myself into my warm fuzzy Vera Bradley blanket.  She offered to come back, and I said “Nope, let’s go now.”  I loved it.  It was a normal activity and for a moment I forgot that I was on telemetry on a cardiac floor in U of M hospital.  Just working out and talking about our kids was a nice break from the ordinary.   

Believe it or not, after 44 days I am still getting new nurses from time to time.  They all know me as the girl who walks laps.   

Tim came and as we walked our laps the staff said, “Hi, Sherry and Tim.”  We both are becoming well known in these parts.  

Today Tim said he was walking Lewis in the park, and he was sniffing something.  When he went to find out what it was, he said he was a bit surprised to see a little white feather.   

Day 42 

Today I will be joining a staff meeting at work. I have never looked forward to a staff meeting like I am today.  I am missing my office and team.   

I saw the weather for this week is going to be gorgeous.  If I am still on Floor 7C, I might ask the nurse to take me outside so I can enjoy five minutes.  I could really use a dose of Mother Nature.  I have been very tired the last few days.  Sometimes fresh air can refuel the mind. 

I continue to stay positive.  There is a lot to be thankful for.  I’m thankful to be here for one.  It is hard to be away from family, friends, and dear Lewis but the staff is taking very good care of me.  I know I have said this before but after 42 days, I still have not had one bad experience with staff.  I had something called flash pulmonary edema. Shortness of breath and fluid buildup comes on very suddenly.  I was grateful to be here because an IV dose of Lasix took care of it lickety-split.

Enjoy the day.  I don’t want to be late for my staff meeting. 

Day 39 

*ATTENTION - spoiler alert*  Reference to today’s Wordle word is in this entry.  Proceed with caution.   

Tim came straight from working on a midnight shift to spend some time with me this morning, followed by my parents and then Nick and Sam. A nice day full of family.  While I was waiting for Tim by the elevator, my eye caught a glimpse of a “little white feather.”   

A little white feather has become a comforting reminder that there are loving spirits all around as they seem to show up at just the right time.  Today this feather reminds me to stay strong and positive. Also, “Angel” was the Wordle word of the day so … Boom!    

The last two days have been a bit of a struggle for me.  I’m still feisty and ready for whatever might come my way.  I just miss life outside these walls.  With that said, I’m thankful to be here and will remember that a heart was given yesterday to someone on this floor.  

I celebrated her gift by placing my hand on her room number as I walked by today.  It was a brief moment to bond with a stranger.   

These are the moments that get me back on track and help me remember there is a purpose and to not forget to appreciate the people who are making it happen.     

Enjoy the rest of the day, Go Blue, and maybe a quick prayer for the lady down the hall and the donor who got her one step closer to going home.  

Day 39 

Wow, how an insurance approval can lift your spirits.  Got a call from the insurance and two minutes later my cardiologist peaks in my room and gives me a thumbs up.  Everyone is already geeked about being back on schedule.  I feel like a little spitfire this morning.  Would walk all my laps at once if I wasn’t going to have breakfast delivered soon.   

I also topped off my already awesome morning with a latte order that will be coming when my parents arrive.   

However, let’s back up to before I was on this high.  I was awoken by a lovely woman who hated to wake me but had to do a blood draw.  I think that must be the worst job to wake people just to poke them.  Anyway, I ended up falling back asleep and waking up around 8 a.m.  Tim had called me four times but because I was SLEEPING, I didn’t have my phone on.   

I got up and looked at my texts and this is the sweet, kind, lovely, text I received from the former mall cop. “I’m glad you’re in the hospital on telemetry because I’ve tried calling 4X and you don’t answer.”   

I don’t know about you, but I think that boy needs to be reminded I’m in the hospital waiting for a heart/kidney transplant and rest is important.  All kidding aside, I bet that it is a little disturbing for him so maybe I need to be reminded that Tim’s waiting for his wife to get a heart/kidney transplant and unanswered phone calls can rattle the nerves a little.  Okay, I’ll take back the harsh “former mall cop” title and replace it with a “concerning husband” title.   

I’m no longer on hold status. Back to Status 2E.  I like this new status.  Let’s Go.     

Day 37 

I started off my day in rebel mode.  Snuck out the Keurig and made me a cup of coffee. I have already cleaned up the evidence and put it in its secret hiding place for tomorrow’s use. I woke up very well-rested and full of feistiness.  I walked two of my four laps and no one blocked my path.   

It was like everyone knew that Mama Bear was out and about, so they moved aside and let her pass.   

The sun is super bright and full of promise today. Thirty-seven has always been a significant number for me. Fun(ny) fact about Tim: I met Tim when he was a Livonia Mall Security Guard, and his badge number was 37.  That number has popped up a lot in my life so let’s enjoy day 37 for its powerful significance in my life.  This also opens the door for some “poking fun” at Tim, the mall cop.  You have my full support and approval.   

Still working on insurance to approve my kidney transplant and hope to be relisted today.  I could easily get all upset and stressed about this situation but why?  It will happen when it is supposed to and I will benefit from it when that time comes.   

Enjoy the bright sun!   

Sherry with her finger over her lips in a "shush" sign, next to a Keurig coffee maker and mug.

Day 36  

Let’s start with the real issue here.  They made me pack up my damn Keurig.  Apparently, there has to be a little safety sticker which is missing. A sticker. I’m a rule follower, as you all know.   

My goal today is getting my insurance to authorize my kidney transplant. I do believe the right match will come, and this delay just might be the reason so I will be respectful of the journey.   

I want to say how grateful I am for each one of you.  Your support, friendship, kindness, and love are a big part of my sanity these days.  I draw strength and hope from you all.  I will never be able to thank you for this type of love, but I will never forget it either.  You must know that I am grateful for all of you for helping me and my family through this.   

Now, where should I plug in that Keurig.   

Day 35 update 

They took away my Keurig and my small bedside rug.  This will be discussed in tomorrow’s update.  I need a cooling-off period. 

Day 35 

It was brought to my attention that my calculations were incorrect on my length of stay.  I’m back on track and it’s day 35. Yesterday was Sam’s (Nick’s girlfriend) birthday and I really wanted to share my heart birthday with her.  Maybe we’ll have to share a “birthday week.” 

I had a dream last night that I was reunited with Lewis. I really liked that dream.  I’ve been FaceTiming with Tim during the nighttime zoomies.  He is one funny little dog.   

My cardiologist came by yesterday. I can’t tell you how much better I feel knowing he is back at the U of M watching over me. Especially with all the changes in my plan of care.  He is the one medical staff that has always been here.   

I have been sleeping a lot.  Tim arrived yesterday at 1 and I hadn’t been out of bed yet.  We decided (HE INSISTED) that I get up every day and walk one lap in the morning, two laps in the afternoon, and one lap in the evening. He is cute when he tries to boss me around.  I agree, so this morning I got up at 8 and I’m having my coffee, writing to you fine folks and then off for lap one of four.  

Hospital staff enjoying some cookies.
Cookies for the hospital staff caring for Sherry.

Day 34 

A foggy day outside my Ann Arbor window.  I see the community pool is closing for the season and fall is pushing its way in. I can see just the beginning of some trees letting go of their summer green.  Seventeen years ago, I was on this same floor. It was October, and the trees were in their fall glory.  This year, I get to witness the change day by day.  The view has become a visual treat and a sad-but-grateful reminder of my length of stay. 

Nick came home this weekend. He has been coming home most weekends to spend time with me. I know it is a long drive for a short visit, but I do love it when I see him peeking through the small window in my door.  Hayden comes most days except for Mondays and Wednesdays because he has a full day of school.  He is training for the Detroit marathon and ran 10.1 miles yesterday.  He said it felt great, something only a runner can understand.  Someone, please explain it to me.      

A Lewis story: He still loves my PJs that come home from the hospital and smell like that lady that snatched me up and brought me home.  Where is she?   

Tim will visit today, I will look out my window and watch him wave from the sunroof as his car passes, we will make my bed so it’s super comfy, I will wait for him by the elevator so I can hug him right away, and we will just sit together.  Sometimes he naps, but it is nice just having him in the room.   

Day 33 

Nothing new to report today.  The nurses ask me every day what my goal is. The same goal as yesterday, the day before, and the day before that.  Enjoy your day.   

Day 32 

Good Saturday to all.  There is a football game scheduled today at 3.  I am told if I sit out by my window near the elevator, I might get a glimpse of the planes that fly by.   

Nephrology (kidney) transplant team stopped by this morning. Here are some interesting facts about the upcoming heart/kidney transplant procedure. I will receive my new strong, healthy heart, and the kidney surgery will take place 6-12 hours later.  Good news for me, I will be out for the entire time.   I should be relisted today after I have a scan of my kidney area to make sure all “plumbing,” as the fellow put it, is in good shape and ready to go.   

At first glance, I present well.  The surgeon asked me if they would be sending me home to wait for my new heart. He clearly missed that section in my notes that says, “52-year-old woman, presenting with vasculopathy in three coronary arteries placing her in heart failure and in need of a heart transplant.”   

In his defense, I do look healthy at first glance.   

So proud of Tim, he took Lewis to the dog park yesterday. This is not an easy task considering Lewis may or may not come back to him easily.  I wish I could share the video of Lewis running around, crazy and trying to play with the big dogs in the area on the other side of the fence.   

Today, I have a packed day of Tim, Hayden and Nick coming. Can’t wait to see my family.   

Big thank you for my glow-in-the-dark Snoopy pillowcase.  

Snoopy hugging Woodstock on a pillowcase

Day 31 

The news I’ve been waiting to share with you: I have been on hold to determine if I need a kidney transplant, too. The final answer came through today and approval was given. I will be on the heart/kidney transplant list. This does not change my status which is a 2E. Please be grateful for this new development, as we are. My kidneys are struggling and after the transplant there will be more to ask of them with medications.   

 Please pray for my soon-to-be donor family because exciting news for us will be heartbreaking news for them.  This is something that is very important to me.  We must always remember the other side of the story and be forever grateful for the strength, love, kindness and remarkable courage of a donor and their family.   

 Heart and Kidney Strong.  Love to all.  

Red outline of a heart and gray outline of a kidney, interlocking

Day 30

I started physical therapy yesterday to keep me strong.  I’m so excited to have this new daily activity. I’m doing mostly arms and legs to add to my daily walking program. Friday, I will get to go into the room and use the machines. This is good for my mental well-being too.  Bring on the PT.   I am also getting a refrigerator. This may take weeks to arrive, so I was told.  I’m thinking I’m not going to be here when the refrigerator finally arrives.

Apparently, the nutrition department is concerned about my food intake and feels that food from home may be a little more delightful to my pallet.  I feel like a refrigerator is a sign of a long-time stay, so I tried to push it off, but they insisted. I’m thinking, flavored coffee creamer will be a staple.

Today, I hope to get an update on my status. I’m still on hold but anticipate that will change tomorrow.  My kidneys have taken on 17 years of strong medications and the doctors just want to make sure they are going to be strong enough.  I’ve been given a 48-hour cram course on kidneys and I have to say, they are a little underappreciated bad-ass organ.  RESPECT the kidneys!

A little fun fact about my room. The clock makes a weird sound at 57 minutes after the hour.  Every hour on the hour so, most times I don’t even need to look at the clock because between this little noise, the trains, blood draws and pressures, and medications, I got the day's schedule down.  Who needs a clock when all these outside features provide the time for you?

Enjoy your day no matter what time it is.

Day 29

Yesterday, oh yesterday. I was put “on hold” which means that if a heart becomes available, I will not be eligible.  It’s a bit of a setback but the doctors anticipate it will only be for a day or two. They are looking into a few things and only want the best for my outcome and so a few days on hold is a good thing in the long run.  Trust me when I say it is just a small hiccup and I will fill you all in once I get the full picture.

Here is another awesome feel-good moment.  Yesterday my nurse brought me a beautiful flower arrangement. Guess who sent it? The family painting my house. Can you believe that? Tim mentioned why I wasn’t around, and they sent flowers.  Not only did they do a great job but how thoughtful!

Thank you all for your continuous support and prayers.  More to come, I promise!

A vase of yellow daisy-like flowers and a note that says "You are capable of amazing things."

Day 28

I finished my book yesterday, Remarkably Bright Creatures, it was fantastic and I highly recommend it, as does my niece, Marielle, who is an avid reader. The books on the floor in this photo are ones she has yet to read. Onto a new book my friend sent with Tim.

Hayden and I started watching Wednesday together.  He was hooked on episode 1.  I am excited to watch this with him because I knew he would love it. Tim got wind of this and together they watched episode 3. I’m like, “Really? You have my dog who literally didn’t care much for you and now you’re his best friend, you can’t let me have Wednesday with Hayden?”  All kidding aside, enjoy watching Wednesday with Hayden and my little Lewis on your lap!

My niece had twins just over a month ago.  I haven’t met them yet and the bummer is, I probably won’t until they are quite a bit bigger.  I guess I’m putting it out there now.  At the next family gathering, I GET THE BABIES, for as long as I want.

A friend of mine turned 80 yesterday and she walked across the Mackinaw Bridge.  I think next year I will join her.

Plans for today:  Same as yesterday, the day before, and the day before that.  Let’s do this!

A gray and white cat sitting in front of several piles of books, in front of a bookshelf full of books

Day 27

You really do read my posts.  Sorry for the delay and for making some of you worry.  I was very tired today and slept in until almost noon and my parents came up for a surprise visit along with Hayden.  So, what started out to be a lonely Labor Day, was surprisingly filled with love from my family and friends.

For those of you who know my friend, Holly, you know she will deliver.  I asked for a shirt, and she made it and delivered it to my house in less than 24 hours. Now, I can’t say you will get the same service unless you have a time-sensitive order like mine.  Thank you, Holly!

Hayden also brought be a surprise from my neighbor Anna - a super cozy blanket. But more touching than anything was the poster board she made for my room.  I love it and I plan on having the staff sign it.

I know each one of you is sending your love and encouragement.  Trust me when I say, I can feel it. My strength comes from you, my family and God and we continue to wait for our special moment.

A posterboard of photos and an encouraging message

Day 26

Another sunrise that didn’t disappoint.  Hayden came yesterday, we talked a bit and played cards.  I don’t know if he is feeling sorry for me, but I beat him at every game.

Ulta is having a big sale today. I plan on shopping with my bestie, Richelle, by Facetime.  This is a warning to Tim.

Another fun fact from my room, the Amtrack train goes by my window every day between 7 and 7:30 a.m. and 8 - 8:30 p.m.  I can confirm that they run on time because I find comfort in looking at the clock when I hear the toot of the train.  So, if you have a scheduled pickup in Ann Arbor to Chicago, I suggest you arrive at the station on time.

Yesterday, two nurses came in to hang an IV bag of iron. This is extremely unusual and anything out of the ordinary strikes an inquisitive thought. I Googled “why do you get IV iron?”  The Google Doctor that I am picks up on the only definition that suggests the IV iron is given before surgery.

I called Tim and told him they just hung an IV bag of iron so he might be getting a call from me, and he won’t be heading to work tonight. My nurse came in and I just looked at her and said, “Any chance I should be excited that I’m getting an IV bag of iron”.  Her response, “Oh no, honey.”  And, with that, Tim was off to work. Cheers to another beautiful day.

Day 25

Today is the first home game for U of M football.  I’m anticipating some increased traffic out my window today.  Something new to watch.

I asked my nurse “Who will deliver the news of my new heart?”  I was told that it is usually the nurse practitioner on the Heart Failure Team and my nurse.  So, guess who I hope to see today?

Every day I add a tally mark to keep me on track of how many days I’ve been here.  Crossed the line to make 25 today.  Enjoy the holiday weekend.

25 hash marks on a dry erase board

Day 24

Good Friday morning.  I have built some friendships here on Floor 7C.  I must admit, I’m probably a pretty good patient. I take my own showers; Tim and I change my bed sheets and I keep my room pretty clean. I have been given access to the nutrition room (I think you get that once you claim residency).  I also have a friend (a patient) who I pass on my walks and we smile at each other, exchange a quick hello that represents a “high five, go get ‘em,” message that only two patients walking a 500-foot hallway can understand.

I have been having more and more chest discomfort and they continue to adjust my meds to help remedy the situation.

Today I will finish my blanket as I am down to my last skein (9) of yarn.

I have been here long enough that the Heart Failure Team of doctors are switching.  They switch every two weeks so today I get a new team. Too many changes for a girl who likes a routine.

I am not losing my feisty spirit as the days go by.  I’m sometimes a little sad but always super feisty.    I am looking forward to taking on those hurdles ahead. First hurdle, getting out of bed.  I will make you all proud.  I am strong, I am fierce, I am blessed and I am ready!

Sherry Johnson with a feisty expression, holding up a raised fist

Day 23

And just like that, it is the end of August.  I will miss this old heart of mine.  Sue’s heart has been my heart for almost 17 years.  She is a part of me.  I talk to her a lot because when you have someone else’s heart in you, you just tend to lean on them in your head. Quiet conversations about accomplishments and gratefulness are exchanged daily.  I say, “Look what we just did,” and “Couldn’t have done that without your strong heart”.

Although I am ready for this new heart to bring me more life, I am going to be sad when I have to let this one go.  This heart is strong, beautiful, and forever a part of my journey.  She will NEVER be forgotten or dismissed.  I will honor her again and again for she is who got me here today.

Sherry, in a surgical mask, looking out her window at Michigan Medicine on a bright, sunny day

Day 22

It’s a beautiful Wednesday. The big question at 7:30 a.m. is “What to order for breakfast”? Ordering my food has become a bit of a math problem. I can only have so many fluids, sodium and saturated fats. If I eat too many at breakfast, it will affect my lunch allowance. Remember the stupid math problems you would say to yourself “When would anyone need to use this?”  I wish I paid more attention because one slip up and I might be having Uunsalted chicken consume, which is fancy for “shitty soup”.  Tim was my visitor yesterday.  When you’re in the hospital for 22 days you find unconventional ways to pass the time. I waited by the window looking for the white Honda CRV with a sunroof.  Well, I saw it and Tim was waving out of the sunroof to me.  How adorable is he? I snapped a picture.

A white Honda CRV, as seen from the 7th floor of the hospital

Day 21

What does one do for 21 days in the hospital?  I think I have had every nurse and tech on this unit, and I couldn’t pick a favorite. They are all wonderful.  I received a paint-by-number kit yesterday from a dear friend.  Today I begin my masterpiece.

Day 20

I just talked to Tim and he is on his way to Sherwin Williams to pick up the swatches I requested for the house. He’s doing such a great job.  He visits most every day and brings me all my at-home supplies: Clean PJs, coffee pods, blankets, makeup etc. He takes great care of the house and little Lewis, our new puppy, and continues to keep a good routine for him and Hayden.  This is harder on him than on me sometimes. Tim also has to be the one who pumps me up when I start to get down. All my love to my husband for being so amazing.  Today Hayden started his junior year at U of M Dearborn.

I think we (staff and my family) are all a little surprised at the wait time. I have to remind myself that it will come.  I will be home soon to a new-looking house, an overly excited pup, and a relieved and joyful family.

Day 19

Nineteen has always been a good number for me. Steve Yzerman was #19 and I love him.  Yesterday wasn’t the best day for me. I hadn’t slept well for two nights and some chest discomfort was a bit concerning.  Also, limiting my visitors brought me down a bit.  My dear friends and family helped fill my days. Today is a new day and a I feel it mentally, too.

Tim says the U of M campus is filled will life now that the students have returned.  Hayden starts on Monday. He has a full load and will be busy.  We are getting our house painted.  I am a bit nervous leaving this 20-year-plus commitment in the hands of Tim.  So, he has graciously offered to go to Sherwin Williams and bring me the color swatches I have requested.  When I go home, it should be done.  That will be so weird.

The doctors have encouraged me to walk, walk, walk, the hallways.  Masked up of course.  So off I go.

Day 18

Tim is here visiting with me already this morning.  The doctors have made their rounds and due to respiratory precautions, they have asked that my visitors be limited to Tim and the kids only.  Thank you to all that have scheduled to come visit but we are going to cancel all visitors for now. I’m very tired today but thankful for the beautiful window I have to view all the people swimming at the community pool.

Sherry Johnson and her family enjoying dinner in her hospital room.
Sherry's family enjoying dinner together.

Day 17

Well, like so many of you, I didn’t sleep very well last night.  I didn’t hear any storms but it was just one of those nights. Nick, however, had what he describes as a tornado go by his apartment and 8:20 p.m.  He said it was like nothing he had ever seen before.  Trees snapping, birds acting strange, rain flying in sideways, and his girlfriend, Sam, yelling at him to get in from the balcony.  Waiting to hear if Grand Rapids declares it a tornado.

I know I told this story to many of you but the last time I was in the hospital waiting for a heart, I asked God to please be with me. I was scared to be alone. It was at that very moment I heard whispers in my room. I thought for sure it was the phlebotomy team. I opened my eyes and no one was there. It was God comforting me and letting me know He is here with me.

Sherry Johnson sits on her hospital bed, crocheting.

Day 16

Last night I woke up and I forgot I was in the hospital.  It took me a quick second to realize that I was at U of M waiting for a heart.  I didn’t hear any of the storms and many of the nurses lost power so I must have been sleeping like a baby.  I’m on my last skein of yarn since I learned how to crochet.  It really is a nice way to pass the time.  I will order some more and have Tim pick it up on his way into the hospital today.  I had a personal Keurig at my office that has now made it to my room.  Now I can have coffee at any hour of the day.  FRESH, good coffee.  My cardiologist checks on me every day.  He is not on rounds in the hospital but when he has a small break he comes up.  He really is the best doctor I could ask for.

I’ve been walking the halls to stay strong.  I can tell you the decor of every office on the stretch from my room to the elevator.  There is a banana dog on someone’s desk.  I see it every time I walk by that office and try to figure out why anyone would have decor that is a banana dog.

The new mystery is WHERE IS MY CHAIR by the sunny window?  It’s gone.  I seriously might leave a note on the next one I snag. Leave here for Sherry, you know the one who thinks she owns the place.  I rearranged my room yesterday.  Much better now.

Day 15

Starting out with a good night’s sleep and a cup of coffee.  My aunt from California is coming today to visit.  I’m so excited to see her. Hayden will be coming too and we have fun playing cards.  I lost yesterday so he better be ready.  His momma is looking to even the score.

There’s a spot by the elevator that gets a lot of sun.  My nurses know that if I’m not in my room, I’m sitting in a chair I dragged from the waiting room. I read, crochet and soak up the August sun there.

I am not scared but I think that when I get the word, my anxiety might just elevate a notch or two.  But as I’m reminded by my dear friend (C), ONE MOMENT AT A TIME!

Day 14

It’s beautiful outside my window.  Looking forward to seeing my visitors today.  The staff here is so nice.  Lots of love from everyone.  Thank you to everyone for checking in on me.  Tim still has the sign the kiddos behind us made when I came home after my first transplant 17 years ago: A big welcome home sign.  I can’t wait to see that again.

Lewis has found a good friend in Tim and is working very hard at trusting Hayden. Tim puts my PJs on the bed and Lewis snuggles up in them.  Soon he will be on my lap.

White and tan terrier lying on a bed
Sherry's dog, Lewis

Waiting to Live: Sherry Johnson’s story

Sherry Johnson, with hair pulled back right, sits on her bed in her hospital room while she waits for a second heart and kidney transplant. Her forearm is facing the camera so we can see her tattoo, representing her original heart and her first transplanted heart.

We met 17 years ago under the most unusual circumstances – it was the day you died, and my life was renewed.

I was so sick and wanted so desperately to see my two little boys grow up.

You’ve given me and my family that life every day since, and I’ve never once had to worry that your gift would fail me. It provided warmth immediately, a familiar feeling but one I had not experienced for some time. From that very moment, lying in the hospital bed, on a ventilator and a bit overheated, I knew life was going to be great!

Thank you, Sue, for giving me your heart so that I could live my dreams.

I want you to know that because of you, I was able to be here for the most important years of my life – to watch my boys become men, which is all I asked for.

Now they are 23 and 20 and I can say I am living my dream.

I was able to witness all their special moments: T-ball, cross country, catching fish, sitting around the campfire, dumb dad jokes, and real, belly-hurting laughter.

I am living my dream.

I was able to see Lake Michigan and her beautiful sunsets and walk her lakeshore scouting for Petosky stones with our oldest son, Nick. I kayaked the local rivers, shopped the local stores, and had our dog Benson, who went everywhere with us.

I am living my dream.

I ran a few half marathons, won gold medals at the Transplant Games, and was part of a Guinness World Record for the most heart recipients together in one place.

I put up Christmas trees, celebrated birthdays, and sat around Thanksgiving tables.

I am living my dream.

I waited at the finish line as our youngest son, Hayden, ran his first half marathon in an incredible time and continue to encourage him to embrace the Go Blue spirit. I witnessed Nick’s strength and determination. If he wants to do it, he WILL.

I was on the receiving end of my husband, Tim’s, love, organizational skills, lists and humor. He was always there to make sure I was taken care of and gave me whatever I wanted.

Sue, you gave me your heart so that I could live my dreams.

I saw this great picture of you once sitting in front of a banana split, your smile big and beautiful. I really love that picture. Now we move on, and you are able to rest. You did your job beautifully, and you will always be a part of me.

You are now the little red heart tattooed on my wrist right next to another of my first, sick heart. As I return now to the waiting list, we must make room for another donor’s heart and begin another big dream that includes weddings and grandbabies, more Thanksgiving gatherings, more birthdays, and life with family and friends.

I am forever grateful, Sue, for the 17 beautiful years of life you gave me.

Smiling woman at a restaurant table with a spoon and a giant banana split
Sherry's first heart donor, Sue Levickas, with a giant banana split and a spoon.

Sharing the Journey

I met Betsy Miner-Swartz, from Gift of Life Michigan, in 2009 when she came to my house to interview me about my heart transplant.

We shared my story to educate people about organ donation and about how donors saved the lives of my family members three times. With a unique family history of cardiomyopathy, my mother, brother and I have all been gifted hearts.

Three times my family sat in a room filled with unexplainable gratitude to a family and a donor for giving us life.

We’ve also struggled with the fear of losing a mother, a son, a sister, a husband, an uncle, a brother, and a wife. We’ve found strength in one another, but we found hope in gifts of life given to us three times by generous, kind people.

Seventeen years since my first transplant have passed and I need another heart, as well as a kidney. My friend Betsy came to visit me at Medicina de Michigan.  We talked about my first donor, Sue, and the years she’s given me and my family.

I’ve watched my two little boys grow into men and that’s all I wanted in the world.

It only felt natural that Betsy and I work together again.

I’m sharing my story – my wait for a transplant – on a very personal level. You will read about my daily struggles, the mundane and my moments of joy in the days or months before I receive another gift from a hero.

I want you to know the moment when I have to say goodbye to this beautiful beating gift I was given – and hello to another. I’m proud to do what I can to help inspire others to join the Michigan Organ Donor Registry.

I want to thank the donation and transplant community, especially Gift of Life of Michigan, for working so hard to save the lives of every patient like me.

Gift of Life is a lifeline for the 2,400 people waiting in Michigan for news that their lives will be saved – including this one life on Floor 7C, in Room 455 at Michigan Medicine.

Woman smiling at the camera
Sherry's first heart donor, Sue
Sherry Johnson next to her donor Sue's quilt square on a Memories From Michigan Donor Quilt
Sherry Johnson next to her donor, Sue's, quilt square on a Memories From Michigan Donor Quilt.
Comparte con un amigo
Vuelve al comienzo