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.

time I have to agree with Dr. Einstein here. Residing in this place I have experienced time on time’s terms. And the terms are, none. It doesn’t exist. It’s an illusion. It’s all relative. When you are living your usual 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 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 lives on. For now.

Some days I feel as though I have woken up in the cuckoos 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 phones 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.

 

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Enjoying My Last Weeks of Freedom

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We have a plan! My husband and I drove down to Pittsburgh for my three-month clinic visit, ECHO, and 6 minute walk test. My ECHO results haven’t changed much but my 6 minute walk did. In June I walked 700ft without oxygen, this time I walked almost 400ft with oxygen. This result completely correlates with my worsening symptoms of chest pain, shortness of breath and exhaustion. Now when I say worsening, I am referring to shortness of breath when dressing, showering, and at rest. I rarely have the energy to leave the house and I no longer do housework. I know, I know, you’re jealous. You wish you could be stuck at home reading, binge watching The White Queen or Fargo and eating gummies. Wait, maybe you are, are you?

My cardiologist explained that because patients with CHD tend to decline quicker than non CHD patients, there is a small window of opportunity where I am sick enough but not too sick to under go surgery. With this in mind, we have agreed that it is time for IV Milrinone. Bring on the Go Juice! So that is the new plan. He will admit me for heart failure, start me on Milrinone and petition for a 1a status change as a special circumstance case. Once that happens, I will stay in the hospital until I receive a donor heart. My transplant coordinator is estimating I will get “the call” in July or August. Which gives me plenty of time to meet others who are waiting, eat lots of fantastic hospital food, and acquire the permanent odor of disinfectant in my nose.

I can’t tell you how happy I am to have a plan. Even though I have not been admitted yet, knowing it will be soon makes all the difference.  The hospital is like a second home to me. Don’t get me wrong, I am not excited to be two hours from my husband, furbabies and friends; however, it is a small price to pay. I am a professional patient. I am kind to the nurses and aids and am very comfortable in a hospital setting. these traits are to my advantage and will make my stay easier. I still would much rather be at home. If i did not, I would for sure be a crazy person.

They will try to make my stay as comfortable as they can, letting me wear my own clothes, enjoy the balcony garden and wander the hospital. I have packed my bag, my husband has packed his and we have arranged care for the cat and dog. There are a few activities I have planned to pass time till the call to be admitted comes. I am sewing telemetry bags to hold my heart monitor while in the hospital.  I would also like to create a pillow from an old shirt of my husbands and spray it with his cologne so as to feel him near me for the nights he is not.

Staying healthy is of vital importance now, as is keeping my head in the game by continuing my daily meditations,  journal and blog. I feel strong and focused, loved and supported.

Chelle

Be A Hero. Be A Donor.

A Spiritual Heart Transplant {Conversations with Myself}

First i would like to thank Spirit for such a beautiful day. I am sitting on our back deck in 70+ degree weather in February in Erie. It’s unheard of. Usually the topics I share with you have pertained directly to my wait on the transplant list. Today, I would like to share something very deep and personal with you. I felt that in order to be prepared for this physical heart transplant, I also needed a spiritual heart transplant. And this is how it happened.

I closed my eyes, relaxed my body and became one with my breath. I imagined it was a beautifully sunny day with the perfect temperature and light breeze. I was walking through a meadow of colorful wildflowers following a path of short grass. I came upon a small child of about three years old sitting on the path holding a blue daisy. She turned, smiled and welcomed me over. The child was me. She had long brown hair, big brown eyes with long eyelashes, perfect coloring and a big magical smile. She was wearing a red gingham sundress and had a scar down the center of her chest. This was our conversation.

me: hi, wow you’re gorgeous.

her: thank you, so are you.

me: how are you? how do you feel?

her: I feel wonderful. I am a miracle, and so are you.

me: yes, we are. would you like to sit in my lap? I held her to me and rocked her back and forth.

me: you are so brave and courageous. I hope I can be that brave and courageous for my transplant.

her: you already are

me: i love you so much

her: i love you too.  I have to go now. You can come visit me anytime

With tears streaming down my face I watched the little girl and her blue daisy cross over a small creek bridge and into the trees. I hollered out to her..goodbye baby girl.

*After I gathered myself together, I went deep. I went to the place I know I needed to go but till now didn’t have the strength or courage to go.

I closed my eyes once more and returned to the meadow. As I walked along the path I met a young woman of about 23 or so. She had short brown hair, big brown eyes and wore an old ball cap with a red billiard ball on the front. She was very thin and frail looking in her top and cut off denim shorts. The young woman was me. This was our conversation.

her: hi, I’ve been waiting for you. She told me you would be coming

me: it’s nice to see you. how are you doing? {we walked down to the creek and sat on the edge tossing stones while we chatted}

her: I am lonely but doing well. I miss my family. Are you angry because I left and moved out here?

me: angry? no way. I am so proud of you. That took guts kid, leaving like you did. You left everyone you knew to move to a place you’ve never been to start a life. That’s amazing.

her: but I didnt always keep in touch.

me: that is not all your fault. your family knew where you were and how to contact you. You cannot blame yourself for their actions. Although, you could have left a little differently than you did. Gave them more warning or explanation. But you did what you thought was right. What you had to do. Without your bravery and courage, I wouldn’t be the strong woman I am today. All the scary things I have done in my life, I did because of your decisions. So thank you.

her: your welcome, your turn

me: Are you angry with me? for not fullfilling your dreams? I am not a school teacher. And I don’t have any children. I know that is what you wanted.

her: You did fullfill my dreams. You are a strong and happy woman. You live in a place you love and have a man by your side that loves you and would move a mountain for you. how could I ask for more? as far as the old dreams, I am glad I had them. They got me through a lot of really hard times. but that’s all they were. You have bigger, more important goals in front of you now. After your transplant you will help others be strong like you. you are right where you are supposed to be. All the decisions we have made have led you to this very place in your life. You got this! Let all of that other stuff go, you don’t need it any more.

me: thank you. I miss you some times you know.

her: I am always here. but we are done for now.

With tears streaming down my face I watched that brave young woman cross over the bridge, take the hand of the little girl with her blue daisy and disapear into the trees.

The Circle

Many years ago I attended a company seminar and acquired the most important tool in my tool box. I don’t always remember to utilize it, and recently a good friend reminded me to. Waiting for a phone call that will change my life and allow me to continue to live it tends to take a toll on the nerves. Anxiety creeps in, stress creeps in. I am always questioning. Is that phone call the coordinator with a donor heart offer, will it be today or tomorrow and if so am I ready, will the call even come? It’s enough to drive me mad.

If I want to stay sane, I need to remember my circle of control. I’m a visual person. I hold out my arms and make a circle. I visualize the things I can control inside the circle and things I cannot outside. Some days it seems like nothing is inside my circle. Those are the bad days. But, I know they won’t last and the good ones will come back around. The ones where I can see clearly into my circle. I see myself eating healthy, walking, meditating and keeping my attitude positive. If I can have more good days than bad and keep my sights set on the inside of that circle…I’ll make it!

Chelle

Be a hero. Be a donor.

https://www.donatlife.net/register/

What A Ride

When I started this blog, I decided I was going to write the truth. Whatever that may be. It may not always be pretty. it may not always be happy. As a matter of fact it may even be hard to read at times. But it will be honest. Here is the plain truth. I am exhausted. I am exhausted all the time. Some days it is more severe than others, but it is daily. This is the kind of exhaustion where you need to rest after showering. 

Most people think that I am still  living my life as usual until the call comes. It isn’t like that at all. Everything starts to change. One question that people get asked a lot is, if you could know your future, would you want to? Well, I know mine. And frankly, it sucks. Although I am absolutely confident I will get the call with a donor heart offer, my body is dying; my husband and I have to sit by and watch it happen. More than that, have to experience it happen. Every day I am waiting for that call, my body gets weaker, I get more short of breath, my memory slips a little more and my ability to comprehend and follow conversations becomes more difficult. I take 16 different medications daily and I am at my dosage maximum. The next treatment available is IV meds or an artificial heart pump. These treatments are merely a way to keep me alive until the call comes.

It is all a roller coaster ride. I have good days and I have bad days. I never know what the day will bring. Some days I can run an errand and some days are spent on the couch. The emotional ride I am on can be difficult for us to deal with at times. I try to keep my frustrations in check, I do not wish to add to my husbands stress and worry. He is my rock. Not only does he have a demanding full-time job, he cooks, takes care of things around the house, is my care giver and comes with me to all of my doctor appointments. It is the alone time that is the most difficult. Even though now a days I am asleep more than I am awake, those hours when I am by myself are starting to weigh on me. My mind starts wandering, and that is not a good thing when you are waiting to find out if you live or die.

I know I am being tested. My strength, my courage, my patience, my faith are all being tested. I know I will pass the test. I have to be stronger than the silence.

Chelle

Be a donor. Be a hero.

 

Autumn

Autumn is upon on us here in Pennsylvania. The temperatures have turned cooler, the leaves are changing color and floating to the ground. This is my favorite time of year, with winter a close second.

I’ve been on the list almost two months now and I actually feel worse than I did in August. It’s been a bit of a bumpy ride. I have been trying to fight off a head cold for about two weeks or so and at the same time have had fluid over load in my lungs. I have been lucky though, the fluid was only a pound or two and we were able to control it with increased oral lasix. No iv or hospital visit necessary. What a blessing that was.

I seem to be losing my independance a little at a time, acceptance has been difficult. We hired a housekeeper to come in a couple of times a month. I know, most people would think that is great. however, when you are a homemaker, that is your job. When you can no longer do your job, those around you pick up the slack. I know my husband is happy to do so, but he has enough to do around here.

I am back in bed today. Trying to fight this head cold, trying to recharge by batteries. #transplantwaitlist #organdonation

Almost 90 Days

I have been on the wait list almost 90 days now, still status 2, still no call. I don’t expect the call yet. But days like the last few, make me pray a little more for that call to come in. I am currently waiting for my transplant cardiologist’s office to call. I am struggling. I am short of breath standing up, getting dressed, just about anything that doesn’t involve just sitting here. The symptoms started while I was shopping a couple days ago and haven’t let up. My first thought was what is called “over do hangover”. That is when you do to much and it takes your body a few days to recover. I am not so sure that is it, only because this head cold virus thing seems to still be here two months later.

It is difficult to accept that my body is slowly dying. I sit here with  a nasal canula in my nose struggling for more air, fatigued to the point of exhaustion thinking of all the things I wish I could do, hoping for the chance to do them again and wondering if I ever will. Then I think of things I can do. So now, I have turned my focus to my writing. I started a novel awhile back, fact is, I have started several over the years. I think it is about time I finish one.

That really is all I have. I am exhausted. I will post when I have news and more energy. Thank you all for your support and your prayers.

Good News

Last week I had my transplant evaluation, my coordinator Tracy told me she would call me in a week and tell me if I had been approved for transplant.What an emotional roller coaster this week has been. The night before he was supposed to call, was a long one. what would happen to me if I wasn’t approved? What if I am approved? How will life change while we wait for a donor heart. I finally had to remind myself that I am not in control and I need to get some sleep.

The next morning we didn’t have to wait long. She called around 9 or 10 to tell me the decision. It was I could do to keep calm and document all the information I was being given. “The committee has approved you for transplant. You will be listed as a status 2.” WOW.

Once I hung up the phone, I literally dropped to my knees and thanked God. Tears flooding from my eyes, I thanked him for yet another opportunity at life. I thanked him for helping get this far and told him I would do everything I can to turn this opportunity into a success. Once, I had a handle on my emotions I skyped with my husband. Trying to keep it together so I could speak legibly, I told him the good news. He also couldn’t hold back his tears of joy either. My whole family is excited for us and nervous at the same time.

I am already thinking of my donor and how it is so ironic that their family’s tragedy will be my family’s celebration. I pray for their comfort.