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.
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.”
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.
Recycle yourself. One Organ Donor can save up to 8 lives. Also, you can’t take your organs with you. 🙂
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.
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.)
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 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.
Last week was difficult. While I got the all clear to finally drive again after shoulder surgery, I also got a PICC line for IV antibiotics. I have recurrent drug resistant urinary tract infections (UTI’s). I’ve done this so many times, I’m bored with it.
I’m also angry because I’ve had to cancel trips that I was really looking forward too, including an autumn extravaganza wedding and Turkey Day with my family. Canceling my plans is painfully familiar and also boring.
Sorry to pout but I’m reminded all too often how many things are out of my control and that a heart transplant is not some miraculous cure to all that ails me. Sigh.
Well for the next 4-6 weeks my goal is to focus on one thing a day that brings me joy. Today I had brunch with a friend & laughed and laughed & laughed!
#alwaysbuystripinsurance Me with a PICC and an antibiotic medicine ball. The ball is more convenient than hanging an IV bag.
Are you trying to decide between lumpectomy vs mastectomy? Unilateral vs bilateral? To have reconstruction or be flat chested?
It’s fucking overwhelming. I can’t tell you what to do, but I can tell you what I did.
I was diagnosed with DCIS (ductal carcinoma in situ) only three months after my Heart Transplant.
I had just turned 40 years old and I had a routine mammogram. It was shocking, considering all the testing that they did pre-transplant and they didn’t find breast cancer?! Come on!
Normal treatment for DCIS is radiation treatment only, but I had already reached my lifetime maximum rad dose, so I was recommended to have a mastectomy. But of course…
When I was a teenager I had Askin Sarcoma and the chemo and radiation caused all of these late effects, such as DCIS. Anyway…
The worst part of the breast cancer diagnosis was waiting an agonizing 7 months for my 1 year post heart transplant anniversary to have a mastectomy surgery. If you survive after 1 year of a heart transplant your lifetime survival rate is higher. I call this time in my life: ripping off the slowest band aid ever.
So I had a lumpectomy, while I waited for the mastectomy because this surgery was not as invasive.
But a mastectomy loomed. For over six months, I contemplated bilateral vs unilateral mastectomy.
I chose to have a bilateral (both breast) mastectomy. Even though cancer was detected in one breast, I wanted to be as symmetrical as possible. This was just a personal choice.
I also chose a bilateral mastectomy, so I wouldn’t have to worry about possible future breast cancer in my remaining breast. Let’s face, my odds have not been in my favor.
Finally, I decided on a bilateral mastectomy because I was encouraged to have this difficult surgery while I was 40 years old with a new heart, rather than 60 years old with a old transplanted heart. Made sense to me, but they were willing to do only one breast and the decision was all mine.
The mastectomy surgery went as planned. I was told “I hit the pain pump a lot,” but I didn’t care because I was comfortable.
After expanders and taking a couple months to heal, I had reconstructive surgery with gel implants (they don’t do saline implants with mastectomies). Six months later I got 3D nipple tattoos (my first ever tattoo, I’m a bad ass now).
I also got an infection nearly every step of the way. Do not let this dissuade you from having surgery.
I’m on immunosuppressive drugs to make sure I don’t reject my heart transplant, so for me healing is very slow and risk of infection is high. I was hospitalized one time for a breast related infection and had to do a few rounds of oral antibiotics. My nipple tattoos got infected and scarred, so now they look very realistic! 😁 I love my nipple tattoos.
I didn’t know I would get infections (which were all managed), so I just took it one step at a time.
I’m especially glad I got 3D nipple tattoos because I look more normal and this was very important to me, especially as I don’t look like myself due to prednisone and 50 lbs weight gain. I look in the mirror or put on a shirt and feel so much better than I did when I was flat chested after the mastectomy and before the reconstruction… its not vanity, breast are parts of my body.
No one would judge you for wanting to look not disfigured. Whatever you choose is the right decision for you.
I hope that my experience was in some small way helpful to your decision making. Be well and drop me a line. 🎗
5am. Today’s the day for my long awaited shoulder surgery! Dr. Khazzam (bam!) will be “staple gunning” my dislocating shoulder back on and then doing a bone transfer to repair the bone knocked away from each of my 6 dislocations. Adam is at my side and here’s our obligatory hospital picture, were both blurry eyed due to the obscenely early hour! It will be a long recovery and, frankly, I’m dreading being in a sling for 3 months, only using one arm and unable to drive. I got this! And let’s face it, with Adam and my Tribe (you) lifting me up, I can do anything (and it could be worse). Be well and I’ll post soon! “Think happy thoughts and you’ll fly.” -Peter Pan ❤️
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. ❤️♿🇺🇸
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.
$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.
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.
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:
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.
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.
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!