My Best Birthday Yet

my 1st birthday

“There are those who hate to see their birthday arrive. Ah, but not I. For each year is a gift, each day is a gift. I am thankful and am grateful for this day of my birth. I find motivation within to live this year so let it begin!”

~~Theodore W. Higginsworth 

 

Waking to a light rap on my door this morning, I slid my eye mask up to my forehead, took a deep breath and started another day in the hospital. A young care aid pops in with towels for my daily wash up. “Happy 4th of July,” she declares rambling on about how quickly the day arrived and where did the time go. “One’s perspective is relative,” I answer groggily from my bed. Looking at the confusion on her face I explain,”To you it may seem fast, however I have been waiting for a heart transplant for 324 days. To me it feels like an eternity.”

After she leaves, I wash up and eat my fake eggs. Shortly after, my husband shows up bearing gifts and clean clothes. I think I was more excited for the clean underwear than the gifts! We sit on my bed and get down and dirty. Not like that, gutter mind. I opened packages from my family as well as strangers. I was overwhelmed by everyone’s thoughtfulness and generosity. About this time there was a knock on the door, three mail room employees walked in with donuts singing to me. And that was the beginning of a great birthday filled with off-key singing. The doctors sang during rounds, the nurses sang at shift change, and just when I was ready for bed the food service workers sang and presented me with a small cake. In between vampiric nurses and singing doctors, I managed to video chat with my family which was much-needed. I also got to go outside for the first time since I have been here. It was hot a humid and only lasted five minutes, but I was glorious!

Every birthday has been a hard-earned milestone for me. I say this every year, and every year it’s true; I never expected to still be here, which in itself is pretty amazing. I have learned to think of my heart defect as a wonderful gift. This gift has made me grateful for every day, even the bad ones. Having TGA has forced me to realize how valuable and precious time is and has allowed me time to learn beneficial life lessons. For instance:

  • procrastination is for the healthy and the young
  • every moment is a miracle
  • don’t waste time on false or toxic people
  • always check my feet for slippers before leaving the house

Today I proven once again, no matter what my circumstances, with a positive attitude and the love of family, friends and strangers I can make any day into a wonderful one.

Chelle

Be A Hero. Be An Organ Donor.

 

 

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What I Do All Day

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Morning comes early here in the hospital with whispers by a nurse with a vampire fetish. Clicking on a dim light, she sucks blood from my PICC line into small tubes while I try to continue snoozing.  As she opens my door to leave, the white hall light splashes across my floor while the dings of my neighbor’s call bell sounds urgently. I roll over snuggling down trying to get comfortable, when I hear a soft rap on the door. What seemed like 10 minutes was actually two hours. It’s the care aid with a giant scale for my daily weigh in. I can’t help but feel like a resident at a weight loss camp. I bet they don’t get weighed in at 6 am though. After I see my bright red numbers appear she hands me my telemetry monitor, I gather my tubes, IV pole (which I named George) and shuffle back to bed.

An hour and a half later, I am lightly snoring away in dream land when I hear a light knock at my door. The door opens to the commotion of the nurse shift change. My night nurse bids me farewell till evening, while my day nurse takes my vitals and hands me morning meds. I slide to the edge of the bed, grab a hold of George and my tubes then  to the bathroom where I pee into what they call a hat. It looks like an upside down white hat, sits in the toilet and measures my output. Good times! I wash up for the day, grab George, gather my tubes and head to my recliner where I wait for my low sodium fake eggs and potatoes which I heavily cover in ketchup. I hear the pleasant ring of my video messenger and have a lovely chat with my husband before his meetings start for the day.

Shortly after that the nurse practitioner/fellow come in to see how I feel and my night was. I tell them what I told my nurse, they do a quick assessment and off they go. Then I settle in with a little light reading, currently The Heart of the Buddha’s Teaching, while I wait for the attending doctor to come around. Depending on the day, what happens next can vary. Once a week my PICC dressing gets changed, twice a week my tubes/caps get changed, twice a week my linen get changed and daily my room gets cleaned. If it is the last two I like to go for a walk, I can’t stand the smell of hospital disinfectant. When they are through I saturate everything with lavender water.

Back in my recliner, I listen to the buzz of activity in hallway. I feel like I’m living in a small town and peeking out the windows.  Engrossed in my reading and note taking, I am distracted by a call of yoo-hoo at my door. My nurse walks in with more meds, a new milrinone bag and takes my vitals, again. About this point my attending doctor, which changes every few days but is always a heart failure doc, comes in with his entourage of fellows, students and groupies. Today is Doctor Ramani. A tall Indian man with kind eyes. I repeat to him what I have told the three people before him and he tells me what the attending before him did. “It is just a waiting game now and we will make it homey as possible for you.” Ok, then.

After another trip to the bathroom, dang the IV lasix works well. Me and George go for a late morning stroll down the hall. I walk and George rolls about 75 feet, then I return to my room. I curl back up in my recliner, pop open my laptop, find a good movie to watch and wait for my lunch to appear. My favorite is the hot turkey with mashed potatoes and carrots. I have to say it is a strange feeling not to be able to go to the fridge anytime I wish. I do however have a snack drawer and the nurses let me store things in their fridge. When I am done eating, someone comes in and grabs my food tray. Then my nurse pops back in with more meds, vital check and blood draw. Are you seeing a pattern here?

Now I am free until my next meds/vital check at 5:00. I usually try to walk every hour if possible, take a nap and do some writing. Walking the halls is a good distraction because I can chat with people. Mainly the nurses so far, it seems I am the only patient up moving around. My day is also sprinkled with battery changes, extra meds (potassium, magnesium), aids documenting my input/output, and just random whatever.

Around 6:00, I am back in my recliner to await my dinner drop off. I should explain that I get a menu everyday to choose what I want for the next day. I usually make substitutions of course, I like something lighter for dinner. The food isn’t too horrible if you know what to order. I like to walk a bit after I eat then wash up and settle in bed for the night. By 8:00 I am nestled down in my bed, my video messenger ringer goes off and I chat with my lovable hubby again. After we blow kisses and say our good nights, I practice a little meditation to boost my spirit and clear my mind. Just as I am getting drowsy, there is a knock at the door. My day nurse pops her head in to say she’ll see me tomorrow and my night nurse walks in. See gives me more meds, checks my vitals and says she’ll be back in a couple of hours to draw blood. Of course she will. And like clock work, the vampire nurse is comes in, clicks on a dim light and sucks blood from my PICC line.

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Soul Mates

LLA

I believe Rumi said it best when he stated,

“The minute I heard my first love story I started looking for you, not knowing how blind I was. Lovers don’t finally meet somewhere. They’re in each other all along.”

I am so fortunate and grateful to have found my soul mate. So many people these days never find that connection. Our spark was instantaneous and strong. We complete each other. Our souls intertwine perfectly.

Although Bill was in the medical field, I was nervous about explaining my cardiac situation and future transplant.  You see, my first marriage sort of imploded partly due to the fact that my ex wasn’t mature enough to handle my illness. I never expected to find a man who would not only be accepting of my impending heart failure diagnosis, but would jump right in to the chaos with me. But that is exactly what Bill did, with a “bring it on” attitude.

My health stayed stable for the first couple years of our relationship, then it took a nasty downhill ride, like a skier on a black diamond slope. This was the start of his caregiver metamorphosis. He takes care of me in so many different ways, a loving approach and a no complaints. Sitting in on countless doctor visits and sleepless nights in uncomfortable hospital rooms, holding my hand through it all. And when everything seems to much for me to handle, he is at his best; holding me, wiping away my tears and whispering encouraging words. He restores my hope and faith.

We are grateful for everyday we have together, more than other couples it seems. We understand how precious life really is, how health can change in an instant. Our unity is strong, I know we can withstand anything that comes our way. My heart transplant is a perfect opportunity for us to grow stronger and deepen our love.

We chose each other long before we came to our Earthly bodies and we will be joined together again when we leave them.

An Open Letter To My Heart

 

My life coach Theresa Ann  and I have been discussing whether or not I was ready in all aspects of my life for my upcoming heart transplant. All range of topics came up; home life, family, physical ability, the spiritual aspect, the mental aspect, even the legal aspect if something where to go wrong. Yes, I feel absolutely ready and prepared.  Or so I thought. Until she threw this one at me…will you tell your native heart good-bye? And if so, what would that dialog look like? WOW. The thought never occurred to me. She is correct of course. After much meditation and prayer on the subject, I came up with a letter. I would now like to share that letter with you.
My Dearest Heart,

When I was first aware of you, I did not like you much. You seemed moody and agitated. People were constantly asking about you and poking and prodding me on your behalf. I hated it and I hated you. You embarrassed me in front of my friends, and no one wanted to play with me. My high school days were no better. The constant name calling in the locker room, the whispers in the halls when you were being monitored by the doctors. I never felt like a normal child. I lashed out. I was awful to my siblings and parents. I didn’t understand, why me? Out of five children, why me? I did not have the tools to cope with it.

Then as a young adult, I failed you. I should have watched out for you. Cared for you better. I am sorry I did not. I chose to forget about you. I tried to have a normal life. As you know, that did not work out. You seemed to get more agitated and sluggish. There were a few times I thought you were going to stop working and leave me all together. But then, I heard you whisper my name. It opened my eyes. I knew I had to start taking care of you if we were going to make it.

We have been through so much in our 42 years, some good and some not so good. You have always been there for me and not once did you let me down. They opened me up and scrambled you around, shoved wires and stents through you. I am so proud of you. You have done a great job and soon you will be able to rest. I am trying to be mindful of our time left focusing on each moment. Trying not to look too far ahead. I hate the sympathy I am getting. Some days I want to hole up and hide with you. Be around me is hard for some, it isn’t a comfortable thing for people, they don’t know what to do. But that isn’t your fault, I am sorry if I blame you.

I am not sure if I am ready to give you away. Part of holding on, is letting go I have asked to see you after surgery. To have proper closure, let’s hope they will. It must seem strange to you that you are being replaced. It feels strange to me too. But if I don’t have the surgery I won’t be around anymore. I know your replacement will be honored and celebrated. As it should be. I promise I will always cherish and love it as I do you.

I hope I have shown you much love and compassion. You should know I am grateful for the lifetime we shared. Your lifetime. Your spirit will mingle together with my donor heart. I will never forget you.

I write this with all the love I have.

Your Lifelong Companion,

Chelle

Be A Hero. Be An Organ Donor.


How Does The List Work

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I have been on the list for 163 days now. which isn’t a lot compared to some friends I know who have been waiting over two years.The question we get asked the most is how does the wait list work. Well, it’s definitely not like a deli counter line. You do not wait for your number.

The way transplantation works is, there are four statuses 7, 2, 1b, and 1a. The bottom status is 7, this means you are listed but you are unable to have surgery to due the flu or another issue, next is status 2. This is where I currently am. I need a heart but not right away. I am living at home, on oral medication and oxygen. Next is 1b, this means you need a heart soon. You may have an artificial pump like an LVAD or are on iv medication but you still live at home. The last status is 1a. You need a heart immediately and are living in the hospital until you get one. I hope I am never status 1a.

In order to determine you gets a donor heart, it works something like this. Everyone is listed nationally by number and broken down into OPOs, which stands for Organ procurement Organization. Our OPO is CORE (Center for Organ a recovery and Education), which I am a volunteer for. CORE spans 500 miles and includes parts of Pennsylvania, New York and West Virginia. There are 7 hospitals in this region. So in terms of “competition” it would be the patients listed at these 7 hospitals. So say someone dies and they are a registered organ donor. First CORE is contacted that they may have a possible donor. After the CORE representative talks with the family, things start to roll. Information is entered into the UNOS database, this is the United Network of Organ Sharing “the list”.  Blood type, tissue type, antibodies, height, weight and location are entered. Once this is done, the match is determined based on these factors and my status. If more than one patient matches all the criteria then the deciding factor is who has been waiting longest or is in need more.

We are basically on call. The call can come day or night at any time, and we have to be ready to move. The donor heart can only stay outside of the body for four hours, so time is of the essence. want me at the hospital before they remove the heart from my donor’s body, so everyone is in position ready. Once the heart has been removed the doctors at that hospital will inspect it, then send it to my hospital for inspection by my surgical team. At any time, the transplant can be called off. I will be in the OR waiting when the heart reaches my hospital. There is a lot of behind the scenes work going on. Most of our friends and family know about our new traveling radius. We can’t go further than thirty miles from our house in case the call comes in. It will take us two hours (in good weather) to get to Pittsburgh and I will need to shower first also. The surgery itself will take anywhere from 8 to 12 hours due to my anatomy and scar tissue. then its to the ICU, then the step down unit on the 9th floor for about two weeks.

People always ask me if I am scared to have my heart cut out and another one put in. No, I am not scared of the surgery. What I am afraid of is not ever getting the call. There is a serious shortage of organ donors and every day 21 people die waiting. I do not want to be one of them.

Chelle

Be a hero. Be a Donor.

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

On with the new year

I was on a little blogging break during the holidays, no worries I am back now and using a new platform! Blogger was such a pain in the rear. Thanksgiving and Christmas were quiet, which was nice. I finally had my gall bladder removed after five years of painful attacks, the recovery was much worse than I thought. My body was so weak and recovery was a slow process. Now I am trying to be a little more active knowing that my body is getting weaker and the transplant surgery is going to kick my ass.  I have a mini peddler I use which is like a bicycle but just the peddles. I am able to do 10 minutes with my legs in the morning and 10 minutes with arms after my nap in the afternoon. I try to do it every other day, most times I have to force myself and sometimes I need to skip altogether.

That brings me to my exhaustion. One of the biggest symptoms of heart failure is fatigue. This is not your average normal fatigue; this is can’t get out of bed, sitting to brush your teeth and getting muscle fatigue after showering kind of fatigue. What causes this horrible fatigue you ask? Well, I’ll tell you. This symptom is because my heart cannot pump enough blood to keep up with the demands of my body, so it diverts blood away from less important muscles and tissues like my limbs and sends it to the heart, brain and kidneys instead. As a result, I am always tired and lack any energy. I sleep approximately 10 hours at night then I usually nap one or twice during the day. If I ignore my body and sleep less then I pay for it for days with even worse fatigue. This blood diversion also cause my limbs to constantly fall asleep, which is rather bothersome but manageable.

I have been waiting for a donor heart almost five months and have decided this year to try to move more even through the fatigue. I think I may have a long wait ahead of me and my body cant afford to get any weaker. with that said, I’m off to peddle.

Chelle

Be a hero. Be a donor.

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