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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. 🙂

My Election Seizure of 2016

FeaturedTravelling 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.

F*ck was my favorite word as a 15 yr Cancer Patient

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My beloved grandmother whom we called “G-Mum,” was pushing me in my wheelchair when we entered the elevator at the same time as Kim, one of my pediatric clinic nurses. She was dressed from head-to-toe in bright yellow scrubs, with yes…wait for it, matching yellow Keds and hair ribbon (it was 1991 after all).

My G-Mum said, “why Kim, you look like a ray of sunshine dressed in yellow.” I snickered and was proud of myself for waiting until Kim exited the elevator, to say to my gentle, kind grandmother, “G-mum she looks like a fucking banana.”

I laugh at this memory because, even though I was a sassy teenager with an impulsive mouth, it’s something I might say today too. It was the first time and if I wanted to idealize my memories, I might say it was the only time, my grandmother ever heard me swear, but I would be lying.
When I was 15 years old, my favorite word was “fuck.” I said it to provoke, cajole and irritate, especially in moments of physical pain and when I could not control a situation.

I had Askin’s Sarcoma, a form of bone cancer in the Ewing’s Sarcoma family. I was powerless over the drugs flowing into my body and likewise of the vomit spewing out. So if there was one thing I could control it was my language. For a teenager to say to their oncology team, “fuck, fuck, fuck…fuck this, fuck you…” was sometimes all I could do.

It was very disrespectful, and sure I knew this at the time, but I had no remorse. I was barely holding on. There were times I wanted to die. I would beg to be sedated, but that required a shot or to drink odious medication that, of course, I often refused. It was a no-win situation, that after hours of stalemate would end up with a physical confrontation. The only reason I did not pull my IV out of my arm was that I had a plastic port under my skin that was used for harsh chemotherapy drugs; a normal IV would be eaten up by the corrosive chemo drugs. The needle that they used to put into the port-a-cath was a curved, jagged hook. It looked like a fishing hook and terrified me. I found it painful to have my port accessed, some nurses told me it was not painful, but they had no idea.

I would later learn that I was allergic to pork based Heparin, which is what was used to flush out the port-a-cath before and after treatment. I would jump off the bed and scream in pain at the burning sensation, it felt like a dagger was being plunged into my ribs. On many occasions, nurses and technicians had to physically pin me down with force to access my port-a-cath and start my chemo treatment, which I routinely refused.

The doctor’s told me that if I did not do chemotherapy treatment that they would have to call Children’s Protective Services. My parents panicked, they were not negligent and they supported my cancer treatment, but they could not control a 15 year-old that weighed 150 lbs and was 5’6” in height. In true rebellious fashion, I told the doctor’s to “fuck off,” and if they thought a Judge could get me to submit to treatment they were wildly mistaken. Oh, it was quite the scene.

Cue my Mum crying, pleading with me to do my Chemo. Doctor’s impatiently waiting. Nurses ready to jump in and me ready for a fucking battle. I would kick, spit and thrash my body, curling into the fetal position, so that the nurse could not start the IV. I’m not proud, nor am I bragging rather this was just the reality of my situation.

On one occasion, I decide to run away from the hospital and drive home. After all I was 15 and I had my learner’s permit and been out to drive for total of a handful of hours, so Dallas highways were going to be piece of cake. I did not really think my plan entirely through, all I planned was to get to the car and to try drive away. My plan had no more elaboration that just get the hell away from the Children’s Hospital.

It was July in Texas and it was at least 99 degrees out. Hot. Too hot for a cancer patient to steal down to the parking garage, use the keypad to get into the car and get quickly discovered by my parents. I then began to irrationally scream, sob and attempt to manipulate my parent’s to give me the keys. The standoff lasted for at least 45 minutes to an hour, at this point Dr. Kamen, nurses and staff circled the car and attempted to talk me down in the parking garage. I was sweating profusely and refused to get out. The windows were electric, so they could not be lowered. There was no way that they were going to lower the windows and give me relief, which would have probably added hours to my full blown panic attack. Dr. Kamen told me that he was going to call the fire department, break windows if had to and/or wait until I passed out. I eventually opened the door and went inside, I was hot and knew that I was not going to win this battle-I had to do chemotherapy there was no other option.

I am not bragging and yet 25 years later, I still have no remorse for how I behaved as a teenager. There were other kids in treatment with me, that did not throw the temper tantrums that I did and I was aware of this and it still did not stop me. I had poor coping skills, even with therapy. Goodness, my therapist was even at my bedside doing relaxation techniques and with sedating drugs, I was still a terrible, rotten teen patient.

Years after treatment, I asked my oncologist the late Dr. Bart Kamen, “do you remember me?” He laughed, “remember you, I give a lecture on you: How to treat the difficult adolescent cancer patient.”

I would like to think that I have helped educate many doctors.

Be kind ‘Merica!

Last week, I was at a resturant during a large gather of visually impaired individuals. As the state capital, Austin has a large community of those whom are visually impaired, deaf & hard of hearing individuals.

The group was in a party room in the back of the restaurant. To get to the restroom, exit & to their tables was a sea of tables & chairs. The servers were helpful guiding patrons, but they couldn’t help everyone. Diners kept their heads down as people with white canes attempted to make their way through the obstacles towards the exit. It was upsetting to witness so much diffused responsibility.

Some ppl adhere to the “mind your own business” attitude & others, like myself, are compelled to offer assistance. I don’t seek kudos, but I do hope this is a reminder that we live in a world of vulnerable people and if you are able, then you have a RESPONSIBILITY to offer your assistance & compassion. It starts a home. ❤️♿🇺🇸

#dosomething #randomactsofkindness

How Much Does a Heart Transplant Cost?

The Answer: $1.2 million dollars (US).

Prior to getting listed on the Heart Transplant Waitlist, I was required to meet with a hospital financial counselor to discuss my ability to pay for the transplant and the annual cost of my care.

Let’s talk money.

They don’t talk about insurance authorization or the cost of transplant during Grey’s Anatomy. What I am telling you is the reality.

You must have financial resources (insurance and cash on hand) to have a heart transplant in the US.

I did not pay $1.2 million dollars because I have health insurance. Though, it has been a financial struggle for me to maintain continuous insurance coverage in my lifetime (especially during times of under and un-employment), but as a childhood survivor of cancer I knew it might save my life (and it did).

Below, I’ve broken down the cost of the $1.2 million dollars. I’ve included both annual expectation and one-time cost of a heart transplant.

I’m about 2 months post-Transplant and I’m filling my weekly medications. You can see the steroids have already started to cause my face to bloat, this is called Cushing’s Syndrome or more commonly “moon face.”

$35,000 Annual Cost of Anti-rejection Medication

You must be able to afford the cost of anti-rejection medications, which costs $35,000 annually for the rest of your life. Did I mention this is the cost every year?

If you can not demonstrate the resources to pay for post-op care, then you may not be a candidate for transplant. You need reliable transportation to get to/from appointments, including airfare and hotel if you’re far from the hospital.

Typically a heart transplant is not the immediate emergency room situation that is portrayed on TV. The Transplant Team will evaluate your case at their weekly meeting to discuss your overall medical need, financial resources and social support system prior to getting on the Waitlist.

$5,700-$15,000 minimum in annual insurance premiums plus co-pays & Max out-of-pocket

If you don’t have insurance, then you might be able to get some charity funding or in some states you may qualify for state-funded high risk insurance, but you may need to do some sort of fundraising (think GoFundMe).

If you are private pay, you will be expected to pay in advance. The hospital may want to see your bank account (yep), prior to getting on the Waitlist.

The financial counselor at my Transplant hospital stated that they like to see at least $40,000 in your bank account, if you’re private pay (an outrageous thought!).

I had to laugh with stress when they gave us a handout on “How to do Fundraising for Your Heart Transplant,” as if I had the bandwidth for such an undertaking.

$10,000 Travel & Lodging

For two years during the workup through post-op care, I lived 3 hours away from my home. My insurance company would not pay for a transplant in my hometown (talk about stressful), but it would reimburse me and my Caregiver for transplant-related travel and lodging FOR THE REST OF MY LIFE, up to $10,000.

I’ve met many Recipients who rent apartments or live in extended stay hotels near their transplant hospitals. If you have to fly to the Mayo clinic for transplant check-ups for the rest of your life, insurance may reimburse you for your flights, rental car and hotels.

I have a transplant friend (she had a double lung transplant) that flies from Central Texas to Phoenix every 3 months. She and a caregiver drive the 26 hours during flu season to avoid infection.

$50,000-$70,000 Work Up

The “work-up” can take days or weeks; it includes all the testing and meeting with countless Specialists to determine if you are a good candidate medically to endure a heart transplant. You may also get a second work up opinion, which means these tests may be repeated and likewise, the cost will double ($140,000).

Tests include cardiac catheterizations, MRI/CT Scans and consultation with every medical specialty you can possibly imagine, including the dentist. You must have good teeth and not have gum disease to be eligible for a transplant. There is a correlation between gum disease and heart problems.

I love gory medical pictures. Here is a sample of my blood specimen I gave during my work-up. I became anemic because I had so much blood work done.

$80,000 Procurement

This is the cost of performing surgery on the Donor to remove the organ and then transport it to the Recipients’ hospital. Hearts are transported in a cooler (often red and white) on dry ice. The cooler is carried by a medical professional (a surgeon or nurse). The organ may be flown on a commerical or private airplane, if needed. Once the organ is received a transplant cardiologist must exam it for viability for transplant. All this must be done within 4-6 hours. It’s a time sensitive procedure. The Donor does not pay for any costs related to organ donation.

$70,000 Transplant Surgery

This is just to pay for the cardiac thoracic surgeon and team to perform the transplant surgery.

$200,000 Anesthesiology

Anesthesia during the surgery is the single most expensive cost of a heart transplant.

$140,000 Post-Operative Care for 6 Months/Cardiac Rehab/Cardiac Bioposies/Surviellance

The first few weeks I was out of the hospital I saw my Transplant team in clinic 3 times a week!

It was a physical challenge to walk, get in the car and then spend nearly a full day, getting blood work, echos and meeting with multiple disciplines. They call this “Surviellance,” and I would say I was watched closely.

About 2-3 months after I’d healed from the transplant surgery, I was strong enough for Cardiac Rehab. This is supervised exercise 3 times a week by nurses and exercise physiologists.

$640,000 Hospital Stay

I was in the hospital for 30 days and half the time I was in the ICU.

Patients are in the hospital for a heart transplant between 15 to 45 days with the average stay around 22 days; during this time the Recipient will be in the ICU. I also spent 4 days on life support (aka ventilation), this is the highest level of care in a hospital and most expensive, because it’s one-on-one nursing and requires technical care.

The above linked article suggests that the successful outcome of the patient is based on the experience of your hospital, so I encourage you to do some research on the Heart Transplant program you choose: it could be a matter of life or death.

If you found this article helpful, please click “like,” and/or leave me a comment.

Here is my most viewed YouTube video on the cost of transplant:

Oops, I did it again!

I dislocated my shoulder for the..um…6th time. I was in the pool and I rested my arm up on the ledge, the perfect angle to pop it out of socket. I knew instantly that I made the wrong move, despite my gentle efforts to prevent this from happening.

Sunday afternoon in the ER. I’m smiling because I have pain medicine on board. Adam is smiling because the situation is ridiculous.

The intensity of the pain has not lessened at all with the high number of dislocations, this time I was nauseous from the pain and thought I might faint. Though I was able to stay alert and after a few muscle spasms it went back into the socket. I credit this to the benefits of physical therapy.

I was able to collect myself with the help of my husband and neighbor, Tracie, whom got to witness blood curdling screams. I eased into the car and headed to the ER, dripping wet in my swimsuit.

Adam grabbed me a change of clothes and I popped a pain pill. I was seen quickly in the ER, to my great relief. X-rays revealed it was back in place. By this time, I suspected as much because I was able to hold a conversation, which is typically not possible when I’m in that much pain. It’s usually instant pain relief when the shoulder is back in place, but this time I couldn’t be sure it was back in the socket. When the injury occurred I heard crunching sounds and feared I had shattered my shoulder, but it was just a garden variety dislocation.

My shoulder surgery is scheduled in the next six weeks and I guess I will just have to hold on tight until then, literally.

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 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!