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.

I’m like a Jedi trained in Mindfulness

“You have such a good attitude,” “You’re so positive” and “I can’t believe you’re so positive” are comments I hear often from medical professionals and people who know of my experience with two bouts of cancer and a heart transplant. Sometimes I feel like a broken human being and in those moments I cry, I lament “why me?” I can really dig in to morose thoughts and negative statements. Cue the sad Tori Amos music.

Being positive takes work and it’s like a mental diet-it takes practice, diligence and its not easy. I have to jolt myself out of the negative moments. I have to work on “coming around,” drying the tears and seeking out the positive aspects of my life, or the fact that I am even alive.

Most people are inspired by listening to motivational speakers or mindful people. I remember being held captive by seeing Maya Angelou storytelling and reading her poetry. Spellbound. Unfortunately, I wish it was as easy as seeing or hearing a vibrant speaker and having their good juju rub off on me.

Instead, I go to therapy and practice achieving mindfulness and a positive outlook. I think of my various coping strategies as “tools,” and I need a variety of tools in my tool belt. Perhaps practicing the art of patience is my most valuable and likewise, difficult skill to maintain in my quest to have a positive outlook.

Prior to transplant, I was fortunate enough to lose some weight, I reveled in the attention and questions, “how did you do it?” Leaning in for a conspiratorial whisper, “you want to know the secret?” Seeking the panacea weight loss cure, I would disappoint my listener by saying, “there is no secret…it’s diet and exercise and it sucks.” It takes time, effort and every meal, every bite you don’t put something into your mouth is a mindful choice. I need to listen to my former self, because I currently have 50lbs to lose (thank you post-transplant steroids) and this is a good reminder to myself.

cropped-20171230_141418.jpg
Imagery helps guide me through painful procedures. I found this heart chair at Cafe Lalo in NYC.

Mindfulness. That’s what it’s all about. Being mindful of your body, mind and spirit is how I’ve overcome such adversity. I’m like a Jedi trained in mindfulness. Since my first bout with cancer at 15 years old, I’ve been training in guided imagery and mindfulness. Goodness, I even obtained a master’s degree in clinical social work, so that professionally I could teach others coping skills.

I like to listen to YouTube videos and the app CALM, which has free guided imagery and audio stories to help you sleep. Interesting how close the word mediation and medication are…

Imagery of the lake and the beach sustain me. I paint elaborate scenes in my mind, pictures and sounds that help me endure painful procedures.

I hate bone marrow and cardiac biopsies, both of which you are awake for during the entire procedure. The bone marrow aspiration involves a drill into your back to draw out solid bone marrow. The nurse said that once you numb the skin the bone marrow draw is not painful. I absolutely disagree and to the nurse who told me is wasn’t painful can suck it! I had to do breathing exercises and visualize being on the beach to get through this terrible event.

Same with cardiac biopsies, which are uncomfortable and anxiety provoking because they take a tube and go into your neck (or groin) and take a sample of your heart tissue. During these procedures, the cardiologist will play Pandora music and ask for my favorite band (I like Red Hot Chili Peppers during cardiac biopsies). I’m also pretending to be on the lake with deep blue water and emerald green trees.

Being positive takes works. Therapy has helped me to develop these skills and when I can’t do them on my own, video and audio stories carry me through to the other side. A good sense of humor and ability to laugh at death has also helped me overcome difficult times.

A now I leave you with lyrics from the Red Hot Chili Peppers for no particular reason other than I like the band. 🙂

“I heard your voice through a photograph, I thought it up and brought up the past, Once you know you can never go back, I gotta take it on the other side” -Otherside by Red Hot Chili Peppers