UPMC Interview

For those that do not follow on facebook, here is the interview my surgeon and I did just before I was released after transplant.

Breakthrough in Heart Transplants Is a Game-Changer For Patients

By HEART AND VASCULAR INSTITUTE, June 27, 2018

 

Michelle Hagerty, 42, writes in her blog that she’s passionate about baseball, hunting in northwestern Pennsylvania, and being an organ donor.

This last concern is no surprise: The fact that Michelle is alive and able to hunt and go to baseball games is due to the transplanted heart that saved her life in October 2017. Her gift came after a grueling four-month hospital stay with daily monitoring and management of her fragile condition.

 Hope for Those in Need of Heart Transplants | Michelle’s Story

Learn how a new breakthrough in heart transplantation could give hope to those in need of a new organ.

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A Different Donor

Stories like Michelle’s are not that unusual. What is different is that Michelle opted to accept a heart from a donor who had died with Hepatitis C antibodies in his system. And Michelle is doing just fine.

Most people know Hep C as a serious blood-borne viral disease that can cause liver damage, liver cancer, and death.

It is transmitted by IV drug use, tattooing, and other ways that blood can pass from one person to another. Until screening began 1992, transplanted blood and organs posed an infection risk as well.

But today there’s good news about Hep C: Thanks to a new generation of antiviral drugs, the cure rate is 95 percent. And progressive hospitals like UPMC, where Michelle received her treatment, are taking the first steps in using this breakthrough to access a larger pool of donor hearts with the hope of narrowing the chronic and life-threatening shortage that plagues transplantation.

RELATED: How You Can Donate Life: Different Kinds of Organ Donation

Balancing the Risks

“It’s a case of balancing risks,” says Christopher Sciortino, MD, the UPMC transplant surgeon who performed Michelle’s operation. “With the new drugs, the risk of dying from Hep C is very small, and you balance that against Michelle’s risk of dying from congenital heart disease, which was much, much higher.”

Michelle was born with Transposition of the Great Arteries, a congenital condition that prevented her blood from carrying a normal amount of oxygen to her body.

She had her first heart surgery in 1977, when she was just shy of 3 years old, and grew up knowing that her diseased heart would always be a factor in her life. “I’ve had countless procedures, tests, pacer/ICDs, and medications my whole life long,” she says.

Eventually the condition took its toll. She was diagnosed with heart failure in 2009 and approved for transplant in 2016.

A Challenging Match

“Michelle was a challenging transplant match,” says Dr. Sciortino. Multiple surgeries and blood treatments over her lifetime had sensitized her immune system and reduced the pool of donor hearts that her body would tolerate with minimal rejection.

When her information was being entered into the donor registry, Michelle discussed the risks of a Hep C donor heart with Dr. Sciortino and a second doctor. After these discussions she decided that the benefit of getting a heart sooner was worth the small risk of dealing with Hepatitis C and opted into the pool of Hepatitis C donors.

“I think this is an important thing we’re doing,” Dr. Sciortino says. “That’s why UPMC has established a conservative research protocol that helps us do it in the safest way possible. I want to provide my patients with whatever advantage they can get as long as it’s safe.”

The seriousness of Michelle’s condition put her at the top of the recipient list. Still, she waited in the hospital as the weeks and months went by without an acceptable donor heart becoming available. Finally, one came.

It was positive for Hepatitis C antibodies, but not for the disease itself, which meant it was significantly less likely to put Michelle at risk for infection. “Honestly, if not for the Hep C, this heart would have gone to somebody else, and Michelle would have had to keep on waiting,” says Dr. Sciortino.

Taking Charge of Her Own Health

Michelle, who is in good health for someone with heart disease, recovered and went home a little more than a week after the surgery—infection free. “It was the combination of a healthy patient, a great team, and a good heart,” says Dr. Sciortino. “Michelle is a shining example of how well somebody can do when they take ownership of their health care. She knew her labs, knew her charts, and took charge of her health.”

UPMC, where organ transplantation was greatly advanced in the 1980s by the pioneering research of Dr. Thomas E. Starzl, is one of a handful of hospitals with the resources and experience to perform this kind of transplant operation. Dr. Sciortino expects the research opportunities and the quality of the patient experience to take another giant step with the completion of the UPMC Heart and Transplant Hospital in 2020.

“As in any hospital, the people are what make this a special place,” he says. “The new facility will have a whole new care environment that will add on top of that.”

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A Little Excerpt

I know I’ve been quiet since transplant. I have been focussing on my book. I thought you might like to read a little excerpt from my first draft, enjoy.

 

Getting To First Base

“Remove your top and bra, opening in the front,” the nurse says, handing me a hospital gown.  I turn my back as I hear the door click shut.  I do as I am told, wrapping my bra in my shirt to hide it.  I stare at the gown.  Its baby puke green with Mickey Mouse faces all over it.  Who would make such a thing? I quickly slip it over my shoulders.  Climbing onto the table, I wiggle around trying to get comfortable and avoid sticking to the paper. I hate waiting. I decide to look around the room. Big mistake, more Disney crap. The minutes tick by, I am freezing. My nipples start to poke against the flimsy gown. The door finally opens and a young guy comes in with a machine. I fold my arms over my chest.

“Hi, I’m _____.”  I really don’t remember what his name was, but for the sake of this writing I will call him Greg.

“I’m here to do your EKG.” Oh God, no. You’re way too cute.

 “Wow, you’re kind of old to be in here, aren’t you?” he asks me.

“Well, ya, it’s because I was born with a heart defect, Transposition of the Great Arteries,” I tell him.

“Yes, I saw that on your chart,” Then why’d you ask?

“And you’re fourteen? That’s cool, I just turned twenty-two.” he says to me. “Let me just plug in the machine and we’ll get started.” Greg started to bring out the electrodes and other things. “They’re a little tangled, hang on I’ll get it. Sorry, I am new at this. You are my first older person; I have only performed this test on toddlers till you.”  Great.

While Greg was fiddling with the wires, I took the opportunity to look him over. He had short blonde hair and blue eyes. He had the body of someone who played sports or lifted weights.

He laid the wires over my belly, he then squeezed slimy liquid out of a tube onto my ankles and wrists, and then reached for my gown. Oh crap. I am still cold, oh God, just kill me now.  “I need to lift your gown a little, sorry,” he said. His cheeks are turning red, oh God. “I need to place the gel under your breast. So, what kind of music do you listen to?”

“Seriously? Um, Madonna,” I answered. He grazed my left boob as he placed the suction cup bulbs over the gel. Wow, his hands are warm. “She has a few good songs. Okay, here we go, hold still,” he said as he pushed a button and printed out a slip of paper.  Of course I’m going to stay still, I’m wearing a Mickey Mouse hospital gown and my boobs are hanging out, where am I going to go?” “We’re done, let me just get these electrodes off and you can cover up.”  Handing me a towel he says,” nice to meet you, the doctor will be in shortly”.

Now I know what you’re thinking. Where was my mother or wasn’t there a nurse present? Well, I have no idea. I don’t recall anyone else being there, maybe there was, but it was the 1980’s, so there was a good possibility we were alone. I have had more tests done in my life than I care to remember. However, I will never forget this test and the first time I got to second base with a boy.

You see, I was born a smurf in 1974. Not a real smurf but close, I was what they called a blue baby. I was cyanotic; I wasn’t getting the oxygen I needed due to a heart defect called Transposition of the Great Arteries. This is a rare and complex defect where my two main arteries, the pulmonary artery and aorta, were reversed. Because of this, my blood was flowing through my body in a different way than it would have in a normal healthy heart, in turn leaving a deficiency of oxygen in my blood running from the heart to the rest of the body. Without sufficient supply of oxygen in the blood my body couldn’t function properly, resulting in my need for immediate surgery. I was immediately whisked away from my mother, my father and I were driven by ambulance to a nearby hospital where a procedure was performed creating a septal defect where the blood could mix, this is known as the Hanlon-Blaylock procedure. This left me less smurf-like and would buy me some time until I grew big enough to have open heart surgery.

This surgery took place in 1977, two months shy of my third birthday at the Mayo Clinic in Rochester, Minnesota by Dr. Gordon Back then when they performed this type of surgery, it was not a cure, just more or less a bandaid to help me survive. My generation of children who underwent this surgery were guinea pigs for the next generation. The doctors had no way of knowing how long we would live or what type of life we would have. In spite of this, they performed these surgeries any way, and I am so grateful that they did.

 

Intermission

Hello all,

For those of you who do not follow my Facebook page, and you should because that’s where it all happens, I got the call for my Gift of Life on October 30th.

I am taking a break during my recovery and to enjoy the holidays with my family.

See you in the new year!

Chelle

An Indomitable Spiritual Warrior

If you have been following me awhile, you have probably noticed that I haven’t written lately. Well, I needed to disconnect. For my own sanity.

I feel as though I’m a conscript in some strange transplant infantry where the war is against myself and the weapons keep changing. They keep me in a place where I have an opportunity to see my husband and mom, yet I cannot leave. I am confined to quarters that consist of my room, other patient rooms and the hallway. A couple times a week I score a day pass for two hours that allows me out of quarters with an escort of my choosing, yet I still cannot leave the grounds. I eat mystery meat and other questionable foods. I get weekend care packages from home that contain snacks and other goodies. There is constant noise and a barrage of interruptions. The nights are filled with anxiety and loneliness. There is no AWOL. The only escape is with an eye mask and headphones. 

I am physically and emotionally drained. I want nothing more than to go home, yet I cannot. I must dig deep every day to find the energy to fight my battles; homesickness, boredom, containment, depression, agitation, anger. The list of battles goes on. Sometimes I just need to disengage. Instead of writing, I have been working on a paint by number and listening to audiobooks.

Writing is my passion. It’s also been my solace. Recently it was brought to my attention that my writing is not only important to me, but others like me. I was reminded that although the days here feel monotonous, each day does bring with it something new. I just have to look around to find it. To ground myself and find the positive. I was lovingly reminded that all these battles are opportunities to grow and strengthen.

To be a spiritual warrior means to develop a special kind of courage, one that is innately intelligent, gentle, and fearless. They can be frightened, but even so they are courageous enough to taste suffering, to relate clearly to their fundamental fear, and to draw out without evasion the lessons from difficulties. ~Sogyal Rinpoche, The Tibetan Book Of Living And Dying

I consider myself an indomitable spiritual warrior.

Chelle

 

5 Tools For Your Emotional Toolbox

“So now I know what I have to do. I have to keep breathing. And tomorrow the sun will rise, and who knows what the tide will bring in.”   ~Chuck Nolan, Castaway

I wake up at four-thirty in the morning with the flick of the overhead light and a chatty nurse. She slaps a blood pressure cuff on me, hands me a shot glass of meds and proceeds to siphon my blood into tubes. If this isn’t bad enough, when she is done she makes me crawl out of bed to get my weight. During this process I am imagining the many ways I could maim her. Yes, I love my nurses, I am friends with many of them. This doesn’t mean I don’t fantasize about grabbing a hypodermic needle and jamming into her eye. Of course, I would never do this, but at four in the morning it’s fun to fantasize.

I definitely woke up on the wrong side of my bed. I am in a growly mood. Monday I felt invincible and strong, today those feelings have dissipated like dew on a June morning. I feel trapped in a bizarre hospital prison with no hope of escape.

We all have to go through difficult times. Even the strongest people who have a  positive mindset will struggle. We are only human after all, and sometimes at our breaking point we turn to the dark side. The toughest of circumstances can feel absolutely unbearable. Like a personal assault attacking our spirit with all its might, it weighs us down like a ton of bricks, holding us in place. So what’s a person to do when they feel this unbearable weight? You have to look within. Be mindful of what you need. Get yourself an emotional toolbox, and fill it with tools. Here are just a few of mine.

1.) Be grateful during the tough times. 

No matter how bad things are, I can always find something to be grateful for. Even if it’s as simple as a chocolate bar.

2.) Remembering how I got through the last difficult time.

Sometimes, it may only be few days since the last time, but if it worked once it may work again.

3.) Live One Moment At A Time.

It is easy to be overwhelmed when looking toward the future. For me, staying present in the moment can make all the difference.

4.) Speaking softly to myself.

I am a big fan of writing letters to myself. There is something to be said about getting your thoughts down on paper. Love yourself, and be kind.

5.) Reach out.

No one can make it alone. Whether it’s a friend, sibling, nurse or holy person; just talking about it can really go far.

We all have choices. It’s these choices that make us or break us. I could choose to give up and go home. Actually, that’s the easiest choice. Just pack up and walk out the door. However, the consequences of that decision would be catastrophically fatal. So I choose to stay in this bizarre bastille, walking laps in the exercise yard with the other wounded prisoners. Yet despite the feeling of being chaotically trapped, I wake every day with a grateful heart. For as long as I am breathing, there is hope.

Chelle

Waiting For Heart Transplant: Day 400 (an open letter to myself)

I was added to the heart transplant waitlist on August 16, 2016. That is exactly 400 days ago. The last 90 of which have been spent in the hospital two hours away from my home and husband. Some days I am sure I can’t go on, others I am sure I can. I want more than anything for my team to find me a good donor match so I can live a more healthy active life, but more importantly, so I can return home. Today I reflect not so much on the entire wait, but more importantly the time in the hospital. As you know, I am big on writing letters to myself. Here is another I would like to share with you.

 

 

Dear Warrior,

Today marks a bittersweet milestone for you. When you received the call that you were accepted on the Heart Transplant Wait list you were so grateful and relieved you hit your knees and thanked Spirit. You were so happy and hopeful, your future looked so bright. Then when they admitted you in June, no one expected you to still be in there waiting 90 days later.

Three months is a long time. You have missed so much; sipping coffee on the front porch with Bill, walking hand in hand through nature, midnight snuggles with Bill’s soft breath on your neck, listening to Skye’s barks and nips in her sleep and feeling the gentle hum of Bubby’s purring on your lap. But for all the things you have missed, you have gained so much; you’ve made new friends, you have a greater sense of who you are, your marriage is stronger, you have built a closer relationship with Spirit, and you have found a sense of purpose.

My dear warrior, you are not the same woman as you were a few short months ago. You have gained wisdom, faith and determination. Because of these days in the hospital, you are mentally stronger and more prepared to face your post transplant recovery.

I know every day you spend here feels like an eternity. But remember, we are all connected. You are here for a reason. Think of the lives you are changing with your strength and positive mindset. The physical borders of your life may have changed, but there are no limits to your spiritual one. Take this time for yourself. Look within. Meditate. Feel. Write. Share your story. This is how you can be of service to others. Your time will come dear one. When it does, all you have endured will have been worth it.

Stay strong. Stay the course. You will prevail.

 

 Chelle

https://www.donatelife.net/register/

 

 

Gratitude Is A State Of Mind

As I wake in my hospital room this morning for the 77th time, I stare at the ceiling and sigh. My first thought is one of frustration, for I am living a nightmare. My second thought is one of gratitude, for I am thankful I am waking up at all. I’ve known friends in my situation that did not.

I’m trying to hold on to the gratitude in my heart when the parade of techs, nurses and doctors starts. I miss the solitude and privacy of our home. The quiet mornings with hot tea, dippy eggs and snuggling with my husband and fur babies. I take a deep breath and remind myself that my situation could be worse. I am fortunate to have such a great cardiac staff here at Presby. They never seem to forget that they may work here, but I live here. And that amazes me. They continually support my family and I going above and beyond their duties by; purchasing organ transplant tee shirts, giving me cards, chocolate, and small gifts. One gift I cherish above all others; the gift of their friendship. We have laughed and cried together. There will always be a special place in my heart for them.

As morning turns to afternoon, grey clouds drift through blue skies and my thoughts drift with them. September is here, the first day of fall is just a couple of short weeks away. I love this time of year, the urge to be back home baking and hanging autumn decorations is almost overwhelming. I am reminded of our friends who have made up a fundraising committee in our honor. They have been working hard putting together a reverse raffle to offset medical/travel/lodging expenses for my husband and I. They have managed to arranged the perfect location with great food and obtain fantastic raffle prizes, gift baskets, and more. The most precious gift to us is their time. The time spent in planning meetings and the Saturday they have given up hold the the event.

I struggle to find words to express my appreciation. We are touched by the overwhelming generosity and kindness that has been shown to us these past eleven weeks. Not only from family and friends, but from strangers also. The outpouring of prayers and well wishes continues to humble me.

Neither myself nor my family imagined that I would still be here in the hospital waiting for a donor heart. I try to find comfort in the fact that the Divine has a plan in motion. I pray for my future donor every day and remember that he or she still has a bit of life to live, and I am glad for it. I think of how far I have come spiritually knowing in my heart that all our suffering will be worthwhile.

Please let me express my appreciation again for all everyone has done and continues to do for us.  I give thanks and show gratitude to Spirit who has designed a plan for my highest good and who has given us the strength to endure and persevere.

Chelle

Medications In The Land Of Heart Failure

I love frequenting our neighborhood restaurant. The waitresses know us by name, they remember our favorite dishes, they always smile and treat us with kindness. Spending the last ten weeks in the hospital with heart failure, waiting for my gift of life, I have found many similarities. Many mornings I feel as though I am visiting a restaurant specializing in medicinal cuisine.

 

                                                            Presbyteriano Café                                                                

Nurse: Good morning Chelle, how are you today?  Your room smells delightful and you have so much sun coming through your window.

Me: Best room in the place they tell me.

Nurse: Sure is. Your doctor has prepared a nice little medley for you, much like yesterday’s. I’m sure you’ll enjoy it. Would you care for a starter before hand? Perhaps Ativan or Tylenol?

Me: Yes, I believe I’ll have the Ativan, that sounds lovely this morning.

Nurse: Good choice. I brought for you a fresh pitcher of ice water, here let me pour you a cup.

Me: Thanks.

Nurse: So, I have for you today; Lasix, Spirinolactone, Neurontin, Metoprolol, Magnesium, Potassium, and Vitamin D. Those come with a side of Folic Acid, Creon, and are topped off with Aciphex.

(I watch as she tears each pill out from it’s own individual package, and drops it into the little plastic shot glass)

Nurse: Last but certainly not least, your Ativan. (Did she really just say that?) (She hands me the shot glass) (I take it, look at it, look at her)

Me: Bottoms up. (I swallow them all with the water from the small styrofoam cup)

Nurse: How does some fluids sound? We have Milrinone and Heparin on tap today. Milrinone comes with side of Zofran and the Heparin comes with a complimentary blood draw.

(Not happy about the blood draw)

Me: Do they come with fresh tubing?

Nurse: Why yes, and new caps also.

Me: Wonderful. That sounds great, one bag of each please. And the Zofran.

Nurse: Coming right up. (Hangs the new bags, changes the tubing and caps on my PICC lumens) Would you like any add-ons today? May I suggest Tums or Miralax?

Me: Not just yet, thank you though.

Nurse: If there’s nothing else I can get for you, I will see you again at 12, 2, 5, and 6. In the meantime, let me know if you need something.

Me: See ya later

 

Chelle

Register here to register as an organ and tissue donor

 

My Heart Transplant Journey So Far..

Happy Waitaversary To Me! Today marks the one year anniversary that the United Network of Organ Sharing added me to the national organ transplant wait list. I am very grateful just to be on the transplant list. It is quite an exclusive group, like a posh country club without the fancy food, expensive booze, and pretentious conversation.

Looking back at this past year, there have been many changes. Some good, some not so good. The first ten months was filled with travel restrictions, extreme fatigue, emotional instability and the beginning of my loss in independence. The first thing I have learned after two months residing in the hospital is those ten months were a cake walk compared to this. I had my furbabies, my husband and we were all together at home. Now we are two hours away from each other. And every day we wait seems like an eternity.

 I have to agree with Dr. Einstein on this one. Residing in this place I have experienced time on time’s terms. And the terms are; that there are no terms. It doesn’t exist. It’s an illusion. It’s all relative. When you are living your usual somewhat normal life, time seems to fly by. However, when you are waiting for a life-saving organ transplant it moves at a snail’s pace. Once I started getting the “go juice” pumping into my heart, the game changed from a physical one to almost all mental/spiritual one. The thoughts foremost in our minds are; how many more days will we have to wait, will they find me a match, and if they don’t; I don’t want to die here I want to die at home.

Life is constantly surprising me. Death has always been my adversary, now in a strange twist, it’s more of an ally to me. And that, my friends, is very unsettling. I feel as though we are playing some kind of hellish game. With every thought or prayer of the doctors finding me a donor heart soon, I envision Death waiting in the shadows with an irreverent grin on its nasty face. Yes, I understand that my donor’s death and transition to the next plane will happen regardless of my obtaining a heart. Yet the guilt and sadness live on. For now.

Some days I feel as though I have woken up in the cuckoo’s nest and expect to see Jack Nicholson walk around the corner at any moment. These are the times I have to practice self-preservation through self-care. The do not disturb sign goes up, the sleep headphones go on and The Honest Guys do their thing. Keeping busy is my salvation here. Working on my writing, practicing meditation, reading, goofing off with the nurses and enjoying family visits have all been my saving grace. I feel there are many more lessons to be learned. Letting go is one of them. For if I can let go, I shall find peace again.

Chelle

It only takes 30 seconds to save a life. Register today.

 

With Love, Humor and Grace

Pulling back from an emotional kiss with my husband, I saw the sadness in his eyes, the sadness that mirrored mine. He didn’t want to leave but I knew he couldn’t stay. Letting our tears flow, we held our embrace a little longer, then walked hand in hand toward the elevators. We expressed our love in a public goodbye, then I stood and watched him go until he was out of sight. I struggled to hold back the flow of tears while George and I turned around, desperate for the refuge of my room.

Almost to my destination, I caught the eye of a nurse whom I have become close to. Noting the look on my face, she asked how if I was alright. I mumbled “Sunday’s are the hardest days”, as tears flowed down my cheeks. She stopped what she was doing, wrapped her arm around me and we walked down the hall. Once in my room, she held me as I cried on her shoulder telling her how much I missed my husband and my home. She explained that being away from those we love can sometimes be a harder struggle than the actual battle we are facing. She reminded me of what I strong woman I am. Reminded me that not only have I have made it this far, but I did so with love, humor and grace. And reminded me that when we get through to the other side of this journey all the suffering and sacrifice that my husband, my family, and I have made will all be worth it.

My strength being renewed, I gave her a hug, thanked her and told her to get back to work. With my head held high, I wiped my tears and told myself I was ready to continue the journey.

I only wish she could have done this for my husband as well.

Chelle

Please register to be an organ donor so someone else doesn’t have to go through what we are. Wwwdonatelife.net/register/