Should I Even Talk About Heart Transplant & Cancer?

I am alive and writing this blog because of the generosity of my heart donor and their family.

Heart Transplant donors must be deceased….Yes, this seems like an obvious statement to make, but I’ve had several people ask me “how is your donor doing?” I have to stifle my laughter, because I tend to find humor in the darkest situations, then I explain that my donor died.

I’ve had two people respond in disbelief and that’s when I had to explain that you need your heart to live and you only have one heart.

And no, they have not done a brain transplant (yet); this remains an urban legend.

I think they were confused with the most common type of transplant: the kidney transplant, where you can have a living donor and both can live with only one kidney.

Currently, there are 102,928 people in the US waiting for a kidney, whereas there are 4,014 waiting for a heart. Recieving a heart transplant is rare in a country of 300 million people, whereas living kidney donation is more common.

I don’t know anything about my donor. Due to privacy and ethics rules guiding transplant, I am not even allowed to know their age or gender. All I know is that I have a “young, vibrant heart,” at least that is what my transplant doctor told me.

At my one year “Heartiversay,” I wrote a letter to my donor family expressing my humility and gratitude. The social worker at the transplant clearinghouse confirmed that the family received my letter, but they did not reply with their written consent allowing us to communicate or for me to obtain any information. Communication between a donor family and recipient is like exchanging information in a closed adoption, you have to go through a third-party and both have to agree to the communication.

I share with you my thoughts about organ donation and my experience as a heart transplant Recipient, because I believe communication can be beneficial, but I also know that this is a very sensitive topic and taboo.

It’s taboo because heart transplant requires the traumatic, sudden death of another person, so that you can live. Unlike cancer treatment, you battle on your own and if you get a bone marrow transplant, the donor does not die.

I debate with myself every time I write a blog about organ transplant, should I put this information out there? Is it too personal? Will I scare someone on the Waitlist? Will I offend a Donor family? Will I discourage organ donation (goodness, I hope not! Please register to be an Organ Donor).

I think if you’re facing an organ transplant it’s helpful for some to know what you’re in for…I mean, I was 3 months on the Waitlist before I learned to say heart transplant “Recipient,” and not “survivor.” Faux pas! You don’t survive a transplant, you recieve a transplant.

It’s different language in the cancer world, when you’re in treatment you’re considered to be a “warrior” in the “battle,” and once your scans are clear or you reach a milestone in time (say, 1 year clear), then you’re a Cancer “Survivor.” I’ve battled cancer twice and I’m a proud “Cancer Survivor and Heart Transplant Recipient.”

Language is important.

Some Recipients are offended and/or have a deep emotional response to discussing their donor (or what they know about their donor). They do not like being asked, “so do know who your donor is?” This can be a triggoring question.

Others feel it’s important to share their donor’s picture and biography, especially on Transplant Anniversaries.

Sometimes I am very curious about my donor and other times I tell myself that this is my heart now and I can’t obsess about who had it before me. I respect that my donor family may be too grief stricken to engage me and the other recipients. I do send my prayers out to their family for the loss they have experienced. I can only imagine the depth of their grief.

But this leads me to ask, should I share such personal thoughts about my experiences with heart transplant and cancer?

I welcome your thoughts and comments. Thank you for taking the time to read my blog. And do consider being an organ donor, because lets face it you can’t take ’em with you!

Here is a YouTube video that I made 5 months before my transplant. I really struggled with this notion that Someone has to die, so that I can live….

How long will I wait for my Heart Transplant?

I waited 99 days for my heart.

Prior to that it took 4 months for me to get listed on the Heart Transplant Waitlist. During the ‘work up,’ I had countless procedures to ensure that I was healthy enough to tolerate the transplant, yet also sick enough to need the heart.

On average, the data suggest you could wait between 2 months (64 days) to 2 years (726 days) for a heart.

If you’re reading this blog then you’re either on the wait list (or your loved one is) or you’re my friends and family. If you’re on the waitlist, you are smart to do your research and also, I don’t have the answer you are ultimately seeking and that is “WHEN AM I GOING TO GET MY HEART?”

I wish that I could personally offer you comfort and to reduce your feelings of anxiety. Know that your feelings are valid and that it is uncomfortable to sit with the uncertainty until you get “The Call.” During this difficult time, I went to therapy and often sought out my Tribe (my support system) to cry on their shoulders. I also joined a Facebook heart transplant survivors group because “misery loves company.”

Getting on the Heart Transplant Waitlist
It’s Halloween (2015) and I am celebrating getting on the Heart Transplant Waitlist with just a sip of champagne! The scars are fake, but the PICC line in my arm is real.

Many factors are involved with matching organs, such as geography, blood type, cavity size and medical urgency (how sick are you?). Matching organs is controversial because it involves social issues and what many consider to be subjective information (how strong is your support system?).

I was listed as a 1B in Texas (Region 4) with an 0+ blood type. The doctors told me that I could wait up to 2 years because I can only receive an 0+ heart, which reduces the matches I would be offered. If you have the more common AB blood type, then your average wait time for a heart is shorter than those with 0+ blood type.

Today as of 7:05pm CST while I am writing this blog, there are 4,011 adults and children waiting for a heart in the United States. You can see real time data of the organ transplant lists and all the data mentioned in this blog by going to the UNOS website. For a more detailed read, here is the latest UNOS annual report about the heart.

PICC line & My Mum
More Halloween celebration…the scars are fake, but the PICC line of “Rocket Fuel” in my arm is real. My Mum, Janon, is 4 months into cancer treatment here. She is wearing a wig in this picture. I miss her very much. My Mum died on Flag Day of 2017.

Recycle yourself. One Organ Donor can save up to 8 lives. Also, you can’t take your organs with you. 🙂

Tattoo’s & Transplant: Taboo!☠️

Of course my new tattoo would get infected. It’s my first tattoo ever. I’m 41 years old and finally a rebel, well sort of.

I’m immunosupressed, so usually tattoos are forbidden in the post-Transplant patient. But since they are 3D nipple tattoos to finish my reconstruction after a bilateral mastectomy for breast cancer, my heart transplant doctors relented and cleared me for these tattoos.

They look so real and I’m pleased to look more normal after my mastectomy. I catch a glance of myself in the mirror and I’m amazed at the realism of my nipples and how natural my fake breasts look. It’s made all the difference and instead of tears of sadness and loss, I have renewed feelings of joy about my feminity.

When I went to obtain oral antibiotics for my infected tattoo, the nurse practitioner almost gave me a lecture about the risks of getting tattoos when immunosuppressed (as if I didn’t know). Again, because the cancer card was in play, I got a pass.

Funny thing, tattoos and post-Transplant. It’s a highly debated topic on transplant Facebook groups. Many push back and refuse to stop getting tattoos, even honoring their donors with a commemorative tattoo. Which is like going out to eat at a buffet to celebrate your weight loss. (Incidentally, transplant patients can’t eat at buffets either because of risk of infection).

Dylan Lane Sepulvado has 17 tattoos, all post heart transplant. Used with permission.

While shame is doled out to transplant recipient’s who get tattoos, it seems compassion and permission from the Transplant team is offered when it’s for cancer recovery, go figure.

Some refer to tattoos as “mental jewelry,” and I can understand those that have the need, despite risk to express their art, it just so happens to be on their skin.

I told a transplant medical assistant I was getting ready for my 3D nipple tattoos and we got to talking about this controversial issue of tattoos and transplant. The problem of tattoos is not just the risk of avoidable infection, but the notion of compliance.

If your pre-transplant and your treatment team recommends something like avoiding tattoos or getting rid of your germ carrying pet birds and you don’t follow their instruction, well the thought is: are you going to follow the rigid rules once you get your organ transplant?

Roo Bublitz had a heart and double lung transplant in 2014. These are actual pre and post transplant heart beats. The flatline represents when he went into cardiac arrest and died, for a short time. Photo used with permission.

If the transplant team does not think you will follow the rules or have the support system to help you through transplant, then you may not get listed for an organ transplant. Yep.

Following the rules in terms of organ transplant can be a life or death issue. But after transplant, all bets are off… What are they going to do, repo your organ?

With so many people needing organs and so few organs to go around, the doctors have a responsibility to ensure that the organs go to responsible, capable recipients.

The doctors are also personally motivated to see that you follow the transplant guidelines. In addition to being gatekeepers of organ transplant, their program is rated on your longevity. It’s a win-win; the longer you live, especially once you pass the 1 year and 5 year milestones, the better it is for everyone.

Jenn Fadley has had THREE heart transplants. Her father got this tattoo (his 1st ever) with all 3 dates to honor his daughter (since she can’t get a tattoo). Used with permission.

I’m not sure if I’ll get more tattoos, the jury is out. I’ve experienced great joy with my 2 tattoos (and I now have more tattoos than my twin sister), so there’s that motivation. I’m not committed to an image I want tattooed… Yet. You never know, I could end up with The Last Supper tattooed on my back as large and in color as Ben Affleck’s back tattoo.

But if I do decide to get more tattoos, I’ll have “no ragrets.”

My Election Seizure of 2016

Travelling is always so much fun...

I woke up to doctors and nurses hanging over me, telling me I had dislocated my shoulder and then mercifully I heard, “push Ativan,” and my light went back out.

The night before the US elections, in which Donald J Trump became President, I had a Grand Mal Seizure. I never had a seizure in my life. It was so violent that I pulled my own shoulder out of socket. When I came to, I was confused and in pain. I didn’t know what happened to me.

Just prior to the seizure, I had been lying in the hospital stretcher in the ER eating popcorn. I remember looking into the bag to see if I could find the last of the kernels. That was my last memory. My husband was turned away, when he heard the bag rustling and thought I was a little too aggressive in getting to the last of the popcorn! When he did look over at me, my body was contorted and in full rigor-it was a terrifying scene. He yelled for help and staff rushed into my room.

The Pout is Real
I dislocated my shoulder in a bus bathroom while traveling. My husband and I were dropped off at the Danbury Police Station to wait for EMS. Why I was traveling by bus and how I had a traumatic event occur in a bus bathroom is not something I have the courage to recall at this time.

Two weeks prior to my seizure, I started a new antidepressant, Wellbutrin. I had my heart transplant in February, but I wasn’t out of the woods yet. I was diagnosed 3 months after transplant with breast cancer (because G-d has a sense of humor). I was waiting to have a double mastectomy as I needed more time to heal from transplant until I could endure another major surgery. Waiting months to have my breast removed was like ripping off the slowest band-aid ever. I thought the antidepressant would help lift my mood. Instead it was the culprit for what ultimately would cause me more challenges.

At the time of this writing, I have dislocated my shoulder FIVE agonizing times. Several of my shoulder dislocations required ambulance rides and propofol (you know the drug Michael Jackson died from taking). My husband watched once as it took multiple efforts to put my arm back into socket and at one point I screamed in the middle of the sedation, requiring more propofol. My husband thought it violent and horrific, which is probably why they usually want family in the waiting room.

Earlier in the day, while I was shopping I started to experience the first onset of symptoms. My knees buckled and I had moments of confusion. I had problems following my grocery list. I noticed that I was having tics and tremors. My head and hands were shaking.

I barely made it home. I was so tired. I called my husband and off to the emergency room we went, just in time to have the seizure in the gurney. It’s been 18 months and I am still having problems from this seizure. Neurologically, I am fine. I don’t have a seizure disorder. Rather I was told that the anti-depressant, like many medications, lowered my seizure threshold. I was on anti-convulsants for six months, but since the seizure was “provoked” and they knew the reason, I was able to be weaned off of this medication.

My shoulder surgery is scheduled and I just hope I don’t dislocate it again. It’s possible that I might need a shoulder replacement in my lifetime. Which is a ridiculous thought that I push out of my mind. I also need a “bone transfer,” where they take bone from another part of my body and patch up and fill in the bone loss that I am chipped away in my shoulder from each traumatic dislocation. I was told that I might need bone from a cadaver donor, but so far, they can use my own bone. (Isn’t medical advancement amazing.)

Travelling is always so much fun...
At the hospital again after dislocating my shoulder. It was an agonizing 2 hour drive to the ER. I screamed and yelled obscenities. It was not my finest moment. The face mask is so that I don’t pick up any germs, since I am immunosuppressed.

While traveling, I dislocated my shoulder on two different trips. Traveling with me is fun, I usually get to visit a local hospital. The first “holiday shoulder dislocation” I was hours away from any medical help. I swear, my husband drove like he was returning a video to Blockbuster to get me to the ER. In all fairness, it was a difficult drive along a two-lane road filled with tourist and me screaming obscenities. Sometimes, I am not so graceful. The other dislocation happened in a bus bathroom, which is a nightmare that at this time I do not have the courage to re-live its telling.

So when I think of Donald J Trump becoming the 45th President of the United States, I recall memories of pain and suffering. I know, that many others feel this way too. All I can say, is that time heals all wounds.

My 1-star Yelp Review: Denied ADA Accommodation (11/3/2015)

Denied ADA acommodation. I was in an electric cart with a portable IV hanging from my arm when I asked for carryout–3 times. The Cashier was rude and said they don’t offer carryout, even after I explained I really need it and can’t shop there if they don’t help me. I am on the Heart Transplant Waiting List. I get very tired and weak. I only do small shops (milk…15 items or less).

The callous cashier was smiling while repeatedly denying me carryout. I told her I wish she was never in my shoes. I left my purchases at her cash stand (she was outraged!). Prepared to return all my purchases, I went in search and found a gracious, helpful parking lot attendant. Arturo was apologetic about his insensitive co-workers and helped me to my car. I was sobbing at this point.

I wish I handled stress more graciously, but when you need a new heart, life is pretty challenging and so to be further challenged by a HMart cashier is exhausting.

My sister went up to the store 30 minutes later and asked for the “Manager On Duty.” The customer service person told her the MOD was “off for the day!” Apparently they have no one running the store. The Customer Service person expressed no concern or problem with their lack of service or lack of ADA accommodation. This response was probably more appalling than the cashiers.

I can’t say this enough, but my life on the heart transplant list is beyond difficult. I can’t expose myself self to the stress and rude, hostile attitude of an HMART cashier, whom I will refrain from publicly naming, because I will not sink to her level.

Shame on HMart. Fix this…train your staff on ADA!

Learning I needed a Heart Transplant…

When I first heard that I might need a transplant, I was in disbelief. It was a trip-the-light-fantastic thought… in my mind other people, sick people, dying people got transplants, not me. I pushed transplant out of my mind and continued on with life. I don’t even remember when or where I was, when I was told that a heart transplant was the likely course of action but it was a couple of years prior to getting on the list.

I do recall a milestone in my journey that caused me a few tearful and at times sobbing moments, and that is when I found out that I needed a pacemaker. I could put a number on my heart functioning and it wasn’t good. The pacemaker meant that my Ejection Fraction was at or below 35%. I had never slipped below 40% before and it was an eye opening moment. I couldn’t escape getting a pacemaker, it was a surgery and a tangible event that would not be ignored. Denial time was over, I was getting closer to death.

How close to death, I don’t know, but I did know that I was tired, I felt like I was walking through mud. During this time, I was working full-time and I took a medical leave to have the pacemaker surgery. The recovery from pacemaker surgery does not require the 12 weeks that FMLA offers you, rather it was more about my anxiety and getting my feet under me-letting the idea of a transplant sink in.

It was 2009, I was 33 years old and my heart was failing me, it was time to take stock. How was I going to live? Was I going back to work? I recall telling my boss that “my head wasn’t in the game” and I couldn’t concentrate on work, at the time I was providing outpatient counseling to children and adolescents. They needed me present and emotionally available and I was just simply none of those things.

I eventually went back to work in the fall of 2009. I was able to stay working until January of 2012. Working became increasingly difficult, as I was so tired. I took every ADA accommodation I could to make job sedentary, but it just wasn’t enough. On a few occasions, between clients I would turn off my office lights and take a nap on the floor, under my desk. The light from my computer screen would annoy me, but when I turned it off I was in total darkness because I didn’t have any windows.

My light was going out. My looks were deceiving, as you can see from this spring of 2009 picture of me feeding the ducks. From the outside, I appeared healthy but on the inside my heart was failing. I struggled with a hidden disability for years and I still do as a heart transplant recipient. I had to stop working in 2012. By 2015, I was in trouble. I was having shortness of breath and using an electric shopping cart on the rare occasion I could muster the energy for a trip to the store. By the fall of 2015, I was being pushed in a wheelchair for most outings outside the house because I lacked the life force energy to walk. My light went out slowly, over the course of months and prior to that a few years.

For a long time all I could do was go to work. I never went out on “school nights,” because I needed all of my energy to go to work. I didn’t run by the grocery store after work, because that too required too much energy. I would take naps, sleep and rest and still wasn’t enough to wake me up. Congestive Heart Failure was knocking on my door.

It would be a long, arduous path to a heart transplant and I was on my way. Eventually I would be hospitalized many times between 2011 and 2015 for fluid overload, a symptom of heart failure. By the time I was told I needed a heart transplant I was ready or at least I was not terrified of the idea of transplant. Transplant is a journey, despite what you see on TV it does not happen overnight.