I didn’t even really know it was happening.

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No one dared say it out loud. Hell, I didn’t even really know it was happening. In the days after my transplant my family reveled in how pink my cheeks were. They oo’d and aww’d at the rouge returning to my lips. Mildly annoyed by their gushing I told them to stop. I didn’t see much of a difference anyway. I look at the same face in the mirror every day. I see it, it’s just… my face.

Fast forward a few weeks, and what felt like a million mg of prednisone. I had ‘fat face’. I was miserable. I didn’t recognize the face in the mirror any more. I didn’t mind seeing people that I saw on a regular basis but seeing those who would ‘remember me skinny’ terrified me. I felt like I had gained 30 pound overnight and people would have trouble recognizing me. My family surrounded me with loving words. They meant well saying, “Jenna, you were just so gaunt.” After the sixth or seventh person told me I had looked gaunt I assumed it must be true but I didn’t really understand what that meant.

I went to the doctor this week and looked at my weight over the past few months. From May to June I gained nine pounds, June to July I stabilized and July to August I lost four. Hallelujah I’m headed in the right direction. Again, I didn’t feel like I was seeing a change. After all, I see me in the mirror every day so I wanted to find a way to SEE my changes for the good and bad that I’ve felt. To validate my feelings to myself so here is what I found. Progress in pictures.

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July 2015 (left). February 2016 (right).

The picture above stopped me in my tracks. I can see side by side the color lacking from my face. I’m gray. I’ve lost the plumpness and rouge in my cheeks. After seeing these pictures next to each other I was finally able to say what my doctors knew, what no one dared say  out loud. Hell, I didn’t even really know it was happening…I was dying.

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Fat face. May 2015

This was my birthday. I cried getting dressed, nothing fit. I remember trying to put my arms in front of me in that blazer and masking my pain with humor, “fat girl in a little coat” I sang. I was happy to be a live but I still didn’t recognize myself. I had gained 30 lbs in three months and I didn’t feel like me. Everyone shared kind words, “You look great!” “I know how you feel but you look HEALTHY now!” I just wanted to shout, “BUT I FEEL HORRIBLE! I CAN’T LOOK AT MYSELF! But then I would be ungrateful for the gift I received. In my own time and my own ways I made peace. Bit by bit. I realized I would be happy with myself again, it would just take time.

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February 2016 (heart) August 2016.

When I was admitted to the hospital I weighed about 112lbs. By June 1 I was up to 145. The only time I had been heavier was during pregnancy. I knew that I could not hit that mark. I could not outweigh myself at pregnancy. I had to do something. My face is still rounder than I would like. Maybe this is what it is supposed to be like and eight years of being in heart failure has caused me to become used to seeing a stranger in the mirror. Maybe this is the real me and just need to get to know her. Either way, I catch glimpses of myself in the mirror and feel pretty. I feel like I can put make up on again. When people say I look good, I believe them… most of the time. My weight is going down and I supposed I can tell a slight difference in my weight between the May picture and the August picture. There is one huge difference between those two pictures. My smile. In August, six months later, I’m starting to feel like me.

If you’re looking for a bit of advice, when dealing with someone who isn’t confident in their appearance, I have some that you are welcome to take or leave. In my case, when I was sharing with someone that I was unhappy with the way I looked, I wasn’t fishing for compliments. I didn’t want to be told that  I was pretty or healthy or how gaunt I used to look. I’m telling you, not because of what I see, but because of it that makes me feel. I’ve never had cancer and I wouldn’t presume to know but, I can imagine that if I lost my hair, I don’t think I’d want to be told that I’m still pretty. If I don’t feel that way, I probably won’t believe you. When I gained 30lbs I didn’t want to hear that I looked healthy. If I had to battle another drastic physical change, be it burns, prosthetics, or something entirely different.  I already know how I feel about me, I’m pretty sure I can guess what you’re going to say (meaning well of course). What I really want to know, is if you’ll go grab a glass of wine with me and help me forget?

Courage, dear heart. C.S. Lewis

#FirstWorldProblem

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I have another blog coming up soon! Until I can get that thought finished here is what is on my mind today. I love Doctor Borkon. He was my surgeon that performed my heart transplant and he’s nothing shy of amazing. that being said I think he may have ruined the v-neck for me forever. You see my scar sit slightly to my right side.

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I spend far too much time trying to get the v-neck on my shirt and my scar to look straight. I’m happy, healthy, alive, and a little crooked. #FirstWorldProblem

Courage, dear heart. ~C.S.Lewis

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How are you?

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Every day I am asked, “How are you?” I ask the same of my husband and children each day. I ask it of strangers on the street, friends on the phone, and dance moms at practice. I can’t imagine the number of times a day that, “How are you?” is uttered. How many times do you reply with something other than, “Great!”? How many times do you truly listen to the response you are given? I think that asking, “How are you?” has simply become a sort of nicety and people rarely actually want to know how you are doing. Since my transplant this has changed a little bit. People do seem more genuine when they ask how I am doing but I am not sure if they really want the answer.

Last month in my blog post I mentioned Trevor, the 15 year old who received a heart transplant, and some of the horrible judgmental comments that were made about his gratitude toward the donor family. I imagine that when people ask him, “How are you?” that he sticks with the simple “Great!” Although I can’t speak for Trevor, my guess that he remains with a simplistic answer stems from my own experiences. I often reply with, “Great. Learning to cope with side effects but I’m so happy to be alive!” All of this is 100% true. It also feels good to be able to share some of the difficulties without being judged.

So, how am I?

I take 29 pills a day. I take 10 to prevent rejection, two for blood pressure, one for cholesterol, one for reflux (caused by the anti-rejection), three for magnesium (depleted by anti-rejection), two for calcium (depleted by anti-rejection), one for vitamin D, one to prevent pneumonia, one anti-viral, three for migraine prophylaxis, one aspirin, two spironolactone (I’ll explain this one in a minute), and the almighty prednisone. My phone has four alarms set daily for medication.

While I was in the hospital I had two seizures caused by one of my anti-rejection medications. They immediately switched the medication but my brain was still swollen with posterior reversible encephalopathy syndrome (PRES). As of April, my head CT is completely clear and I am off of my anti-seizure medications but I am still suffering the consequences. I can’t drive until August. I have a new found empathy for people with chronic seizures (call me if you need a ride!).

Oh prednisone! This one ever so necessary drug causes so much trouble! I’ve gained 30lbs. I could eat nothing but lettuce and run all day but the prednisone holds fat like Lennie holds a rabbit. I constantly feel hungry. It doesn’t matter if I just ate Thanksgiving dinner my brain no longer recognizes being full. I can’t sleep. My hair is falling out of my head. So far I have avoided becoming diabetic but as long as I’m on prednisone I’ll have to be very careful.

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Earlier I mentioned my prescription for spironolactone. This medication will hopefully help me combat my least favorite side effect courtesy of the anti-rejection medication cyclosporine. I’m growing body hair… EVERYWHERE! Yes! I said it! My hair is falling out of my head and growing everywhere else. My four-year-old has actually asked, “Mommy, does your new hair keep you warm?”! Needless to say, I’m skipping the bikini this summer!

I am in the doctors office at least once a month. Immediately following transplant I was in the hospital once a week for a cardiac biopsy. I am taken into a catheterization lab and given lidocaine shots in my neck as the doctor reminds me, “This is the worst of it”. At this point I’m resisting the urge to ask him when he was in my shoes last to be able to tell me which part is the worst. They then insert a small catheter through my neck and into my heart where they take a tiny sample of heart tissue and send it off to the lab to check for rejection. The results don’t come back for 24 painful hours. My biopsies are now down to once a month. I also have frequent chest x-rays and echocardiograms (ultrasound of the heart).

I feel like a stranger in my own body. The weight gain, scars, and side effects make me feel like I am living in someone else’s body. I’ve had to buy all new clothes which, when you’ve gained 30 lbs, isn’t as fun as it sounds. Don’t even get me started on shopping for swimsuits. I’m trying to remind myself that my kids won’t remember that I looked like Sasquatch but they will remember that I swam with them.

I’m a little paranoid. I feel like people who don’t know me talk about my weight and extra fur. I feel compelled to explain that medications have taken over my life. I went to get a massage a week ago and overly tipped. Who wants to massage the hairy girl?

My family and I are still fighting a battle. When I close my eyes I can hear Dan’s voice shouting for help as I succumb to my first seizure. Knowing that I can’t get that sound out of my head I’m sure Dan can’t un-see  my seizures, me being rolled out of surgery unconscious, the horrible amounts of pain that followed. Upon my return home, Mary Ann would hug me and say, “My hugs and kisses will last until you die.” I was devastated.

It is easy to think that once you receive your transplant everything will be fine, easy even. My battle post transplant may even be harder that the battle before.

I AM GRATEFUL TO BE ALIVE – I LOVE MY DONOR AND TEAMMATE

That being said, post-transplant is a hard road. I am still fighting for my life. My family is still recovering and supporting each other emotionally. I think of my donor daily and what she and her family gave up for me. I think of how her family would give anything to be in my shoes and have her back. I will fight every day to show my appreciation for this gift. I will take care of my pristine new heart, but it will not be easy.

How am I?

Great. Learning to cope with side effects but I’m so happy to be alive!

 

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Think before you speak, type, etc.

American Heart Association, Go Red for Women, heart, racism, Stroke, transplant

When I was in the hospital waiting for my new heart.  This video of Trevor Sullivan, 15 years old, was circling the internet. Trevor was the recipient of a heart transplant in November 2015 and the video shows him shortly after surgery and just how he felt.  Take a minute and give it a look here!

While most of the comments were supportive and loving. Ignorance and negativity crept in. These quotes were taken directly from the comments section of the posting of the video on Facebook.

“I hope that heart is not one from those who’d been kidnapped and took the organ n sell to save other life….”

This first quote almost made me laugh. Seriously?! Just to clear things up for anyone who thinks that hospitals will use stolen organs, they don’t. As a matter of fact, before being placed on the transplant list, a patient is required to sign a statement saying if they show up to the hospital with an organ the hospital will not install nor take care of the organ. Moving on.

“Let’s wait and see if this kid and his family bother to contact the donor’s family with that much appreciation. The recipient’s gratitude always dissapears once the deal is done and the body is sewn up..

that being said, I hope this kid never forgets that someone had to die so he may live.”

A 15 year old boy just went through a heart transplant and people still have the audacity to spew judgmental, presumptuous and hateful words! I do not know the situation of the person who posted that comment. It may very well be by a donor family who has been “burned”  by an organ recipient. (I really hope that isn’t the case). That being said, I think we all need to go back to something my mother said to me when I was a young girl, “Think before you speak.” Believe it or not, this was a very hard concept for me.

I taught adults with disabilities for two years in a program that taught these students how to work and then helped them find jobs in their local community. During that time, we also had a lesson on giving back to your community. As a class, we decided to support Spread the Word to End the Word. This campaign encourages people to sign a pledge to end the use of the word ‘retarded’. We set up a table at the food court with a large banner for students to sign. My students approached patrons of the food court explaining what Spread the Word to End the Word meant to them and asking they sign the pledge.

More recently I’ve heard of a fight to end the use of mental health conditions (bipolar, OCD, etc) in casual conversation and as derogatory labels.  I’m sure that people suffering from these conditions don’t appreciate them being used so lightly as to say, “I’m so OCD I can’t have anything on my kitchen counters.”

Friends of mine shutter when someone says, “That gave me a heart attack.” As women who have suffered heart attacks they know, it didn’t come close. I even had a close friend say, “You’re going to put me in heart failure.” Seriously? I was in heart failure for eight years and received a transplant less than four months ago. I didn’t say a word to her.

Sadly the use of racial/gender slurs and jokes are far from gone. Some use them with the intent of being disrespectful, mean and hateful. Other use them simply to be funny or to impress others. Racism isn’t funny. You aren’t impressing anyone.

Here’s the thing. If we quit using every word/phrase that offended someone, we’d have nothing left to say. That being said, we’ve all heard, “Sticks and stones may break my bones but words can never hurt me”. I beg to differ. Words do hurt. I don’t use the r-word and I encourage others not too. When I heard that the casual use of mental health diagnoses bothered a friend I worked to eliminate them from my vocabulary. Are words that hurt people so important to you that you can’t let them go? Are you so filled with hate and paranoia that you have to accuse a 15 year old who just underwent major surgery of not being grateful? Unless you’ve been through your own heart transplant, and actually spoken with Trevor or his donor family to determine his level of gratitude, I think it wise to keep your negativity to yourself. He’s gone through far more as a 15 year old than most have as an adult. He will receive my faith and support until he proves he isn’t worthy. Why is it that we are so skeptical? Why is it that we can’t love and support each other and give our faith and the benefit of the doubt first? I encourage you to think before you speak. Evaluate your vocabulary. Are there any words or phrases that mean more to you than a human being? If you happen to find that to be true, I’d like to call your attention some other advice from my mother, “If you don’t have anything nice to say, please don’t say anything at all.”

Courage, dear heart. ~C.S.Lewis

 

Personification

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So a month ago I wrote that my blog was back in action. Then I did nothing. It wasn’t that I didn’t have anything to say. Quite the opposite, I have so much to share I don’t know where to start. Finally, I decided… just start already.

I created this blog after I was out on the transplant list on St. Patrick’s Day of 2015. I wanted a way to ‘sign off’ each time and after much deliberation decided on,

“Courage, dear heart. ~C.S.Lewis”

I can’t pinpoint the time. Maybe it happened when I picked this phrase. Maybe after. At some point I personified my heart. I can still see it in my mind. Elderly and trying to hard to make it each day. Working far past its physical capabilities to keep me alive. Thinking of my heart this way made me realize something, it could quit. Like someone doing any job, there are support systems in place to may the employee happy, take care of their physical well being etc. Even though you treat that employee the best you can, they can always quit. Knowing that my heart was dying and yet still pushing though each day was humbling and terrifying all at once. I would picture my heart in my mind and think, ‘courage, dear heart’. Please continue to have the courage to fight for me, with me.

On February 15, 2016 I got the news that I would be receiving my life saving donation. I was thrilled beyond belief. I looked into my children’s eyes and knew I would be there mother for much much longer. At the the same time, I was overwhelmed with grief for the family who was losing someone they loved so that I could live. I knew that I would dedicate myself to taking care of this new heart just as I had the one I was born with, maybe even better. Finally I felt guilt and sorrow. I was giving up on my heart. I know it sounds weird but I felt like I was leaving someone behind. Someone I had loved for 31 years. Someone who had stuck with me through thick and thin. Someone who had put me first and was sacrificing themselves so that I could live on.

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Me and my first ‘teammate’. My biological heart.

On February 16, 2016, I received my new heart. It made an immediate difference in the way I felt. I felt stronger and safer. Six weeks after my transplant I started cardiac rehab. Baby steps. I think it was about the time that I was really getting comfortable at rehab that I realized that I personified this heart as well. I would find myself on the last hill of an interval work out thinking to myself, “We’ve got this”. I have a new teammate. She’s got my back and I’ve got hers. We have a long road of balancing medications, continued healing, and so much more.

The fear that my heart could quit is gone. While I still personify my heart I know that we are a team. We are constantly pushing each other to try a little harder, eat a little better, dig a little deeper. I do feel a loss for my first teammate however; the overwhelming pride and gratitude I feel for my new teammate quickly quiets those thoughts. I still picture my heart in my mind. No longer elderly and struggling but strong and vibrant red. When I picture my new heart I still think, “Courage, dear heart. We have a long road ahead of us.”

Courage, dear heart. ~C.S.Lewis

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Back in action!

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It’s been a long while since I’ve posted a blog. Truth is I’ve been working with the American Heart Association here in Kansas City in preparation for their big luncheon that was held in early April. I didn’t want to blog too much as I probably would have had to #spoileralert before you saw this video!

More to come!

Courage, dear heart. ~C.S. Lewis

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#689

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Today started as a same ol’ same ol’ day at the hospital.  The kids came down for a visit and I started my daily walk. I’ve walked in circles all around the 4th floor since I got here 34 days ago. I’ve walked anywhere from 1-3 miles each day. My nurses tell me all the time that the more I exercise now the easier it will be for me to recover after my transplant. Today I was walking with my friend Deb from across the hall. Deb is a 1a also waiting for a heart here at Saint Luke’s. As Deb and I were finishing up a lap we saw two of the transplant coordinators, Jennifer and Julie, standing in the hall. We instantly became suspicious as they never travel together. Deb immediately asked, “Do you have hearts for both us?” and Jennifer replied “no” but ended our walks and shuttled us to our rooms.

Jennifer came in my room moments later with a smile on her face. I asked, “Jennifer do you have my heart?” She said, “I do.” Mary Ann was standing next to me and I started crying. I held her tight and cried. A few moments later Dan said, “Don’t worry baby girl, Mommy’s crying happy tears.” I looked her in the eyes and was finally able to tell her that I would be getting my new heart and I would be coming home soon.

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Hugging Mary Ann after hearing my new heart was coming!

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Jennifer telling me I would be getting my new heart!

February 15 2015 I was told that I would receive my new heart. My mom, dad, Daniel and kids were here for the best news of my life. Although I got the big news today I won’t actually be in surgery until after midnight. I am leaving two dear friends on the 4th floor on St. Luke’s waiting for a new heart. A friend of ours, mother of two, is facing her own heart battle in Salina. For all of you who have prayed for me, please pray for them as well.

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Last family photo with my old heart!

If you’re reading this, I am out of surgery and Dan has posted this blog post for me. I will be out of contact for a few days while I recover. I look forward to talking to everyone and I appreciate all of your thoughts and prayers. Thank you to everyone who has supported me my family! I will see you all soon!

Courage, dear heart. ~C.S.Lewis

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Attitude

Go Red for Women, heart, therapy, transplant

I’ve seen this picture before. It gives a numerical value to each letter (i.e. A=1, B=2 etc) and shows that if you apply that formula to the word ‘knowledge; you receive 96%. Apply it to ‘hard work’ and you’ll get 98%. Finally, is shows you that ‘attitude’ gives you 100%. I think initially this was used by a teacher to inspire students to have a good attitude toward school but I think it also applies to my situation.

National Heart Month is upon us and I think that the American Heart Association really targets knowledge with their campaign. The AHA wants women to know that heart disease is their #1 killer and that 80% of heart disease is preventable. This education is huge in preventing heart disease caused by controllable risk factors. Knowledge is power.

After women know that heart disease is their #1 killer, then hard work comes in. Lifestyle changes are key to a heart healthy life. Women who know that 80% of heart disease is preventable, know that diet, exercise, stress reduction and taking medication as prescribed by their doctors, reduces their risk of heart disease. Hard work also plays a roll in heart disease, like mine, that is not preventable. I reduced the sodium in my diet, changed how I exercised and took my medications diligently. In my personal journey, I’ve put in a lot of hard work. Sometimes, hard work isn’t enough.

Even after all of the knowledge I’ve acquired about my diagnosis and how to take care of myself I’m still facing heart disease. I worked hard to make my life as perfectly heart healthy as I could after my diagnosis. Here I am still waiting in the hospital after I’ve done everything ‘right’. No matter how much knowledge I gain or how much handwork I put in, it all comes down to attitude.

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I’ve been complimented on my attitude numerous times. I don’t really know how to describe what I feel when people tell me that they admire my attitude. I feel almost embarrassed. I don’t see having a good attitude as something remarkable. For me, it is all about perspective and balance. No I’m not a millionaire with perfect health, living in a gorgeous house designed by Chip and Joanna Gaines but, I’m also not a Syrian refugee walking miles a day with little water or food.

Don’t get me wrong I certainly have a pity party every now and then. When I get a little down, I embrace that time and recognize my feelings. Allowing myself to be sad, scared, mad etc. rather than always trying to be happy is important. By recognizing and embracing feelings that can be perceived as negative, those feeling are able to add value rather than negativity. Embracing sadness as a part of your life, builds strength in your mental health and makes you well…you. I believe that attitude and mental health have a great bearing on my physical health and will aide in my recovery. I guess what I’m saying is, for me, being happy and positive is usually easy but I do have moments where I’m blue. In the end, all feelings are important and should be embraced. Happiness, sadness, pride, frustration, anger and the list keeps going; these feelings are important to my heart journey. They are all my attitude.

Courage, dear heart. C.S. Lewis

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Friday

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Friday February 5th is National Wear Red Day and is the big kick off to American Heart Month. I would like to invite you to join me in wearing red. By sporting your favorite red clothing on Friday you are showing that you are informed and advocating for your heart health. Heart disease will kill 1 in 3 women. Whenever I hear that statistic I think of this picture

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My sister Kerry (left), my mom Kay (center) and me (right)!

I am not willing to let any of the women in this photo die from heart disease. Why am I wearing red on Friday?

  • Knowing the risk factors of heart disease is why
  • Ensuring my children grow up in a heart healthy home is why
  • Educating others about heart disease is why
  • Research to eradicate heart disease is why
  • Fundraising for research, education and advocacy is why
  • Survivors are why
  • The American Heart Association is why
  • Advocating for my heart health and yours is why
  • Family is why
  • Her Wedding is why
  • Life is why

Why will you wear red on Friday? Please share your why and include at least one of the following hashtags:

#LifeisWhyKC #KCGoesRed #JennaIsWhy

Courage, dear heart. ~C.S.Lewis

Puppies and chocolate

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Shoes dropping all over the place! I got down to OR holding and found that the pediatric balloon sent was expired. Luckily my medical team caught it before we were in the OR. Unfortunately I will not be have surgery today. As of now, I will get my new balloon pump Monday. My hope is maybe I can get the call for my heart over the weekend and skip the second balloon pump. I’m a little frustrated with my journey. My sweet nurses brought my valentine chocolates in a puppy box! Even better, Mary Ann is coming for a sleepover! 

 
Movies, insomnia cookies and lots of snuggles are of my evening agenda and I’ll worry about balloon pumps later. 

Courage, dear heart. C.S.Lewis