Author: Cheryl Jones

I needed awhile to process the “first date” that I endured with the specialist before I wrote a blog post. It didn’t go as I had hoped, and as “first dates” are concerned this wasn’t the best one I have sat through. So yesterday, I cleaned and organized while I thought about what I took away from that experience. I spent my day boxing up the old, and throwing away objects that no longer please or serve me. I don’t need a trip to the psychologist to figure out that this new energy to purge was a manifestation of “sorting” through this frustrating journey of heart failure: one that has seemingly endless curves and detours. A journey that has taken me away from my life, or at least the one I would like to live.

My husband and I traveled a couple hours to visit the transplant center within a huge hospital. We arrived; waited; was moved around to various compartmentalized areas; waited some more; had a chest x-ray, and then was ushered into a small, dark room. (The entire day at the center was 6 hours – and an additional 4 hours of driving). We sat in this room almost 3 hours before the doctor arrived. We were anxious and perturbed that we had to wait for so long. I came prepared with a large file of all the medical records for the last 8 years that I had in my possession. I gave his assistant a copy of that file 3 hours before, when we were first brought in. We had thought maybe he was reviewing the file before he saw us, which would explain the long wait, but that belief was quickly dispelled once he started asking questions – all of which he could have found the answers to in the file I provided him. Of course, instead of just answering him, I told him where he could find that information in the file. I came prepared; he should have been also. So the first impression wasn’t very impressive.

The initial consultation started very awkwardly, and by the doctor saying, “doing nothing, and not making you miserable while you live out the rest of what life you have left, is sometimes the best method of treatment.” Ummm…WTF? Glad I spent years of expensive and painful tests just to get to a “heart failure specialist!” Well, Gee! I just live incapacitated until I die of it? Thanks for your well-educated and respected opinion! Maybe this was just a “knee-jerk” response from him, to someone that he couldn’t easily diagnose? I really don’t know. I am still grappling with an explanation; especially seeming how he hadn’t even started treatment with me yet. Look, I am ALL for “pushing me down river” if all hope is lost and in an effort to not make me suffer through treatments that prolong my life miserably, if not only shortly.  But this guy puts out the disclaimer at the gate!   Most cardiologists I have been to, take at least a year until they give up. Disappointment bottomed-out at that moment in an environment that felt much like my future with heart failure: dank, prison-like, airless, and formidable.  My hope of finally having a resolution looked bleak.  **On a side note, as a designer who is especially interested in healthcare environments, this hospital is the most depressing hospital I have ever walked through – maybe I should leave my business card.

The conversation waxed-and-waned through what other causes that hadn’t been explored too much by previous cardiologists, such as neurological issues of “nerves not talking to my heart” and exploring my moderate sleep apnea some more. I am sure there must be a “method to his madness” in revisiting the sleep study, but more likely, some grasping in the dark happening…again. I will give this guy the same shot to figure it out, just like the last guys, but I cant help like feeling, at least initially, that this is just more dancing, but by a different clown. I expected more from a specialist, I guess. I am told by loved ones to give him a chance; that he is new to my issues. I understand that. But I am NOT new to this issue and I am ready (desperate, really) for someone to tell me, “I got you.” I don’t believe it will be this guy. I will say that the “something good” I walked away with, is that he is exploring other ways outside of heart transplant to fix my heart ailment, and that was definitely something I had wanted him to do. However, if the problem ends up being a neurological one, he wouldn’t discuss how that problem would be fixed, saying, “we will discuss that when we get to it.” So, I am not sure all this circling will not just bring us right back to heart transplant in the future. Next week I start his regime of additional testing and hopefully a direction will be pursued.

He reiterated the difficulty of my case, over and over, and even called me an “outlier.” Ok, ok, it is hard, but that is why I am here! You are the expert! Can you, or can you not, fix me? I had my answer about an hour into our appointment; if he cannot, he will refer me to the “big guns” at Mayo Clinic in Rochester. There we go…his out, even before we actually begin.

 

I feel deflated by this appointment, not buoyed as I had hoped. I know that tomorrow is another day, and the fight will start anew; but today I am tired. Tired of meeting up to that fight to be told that the enemy is not who we thought, unrecognizable, and, therefore, unbeatable. So today, I will take a much needed rest in this journey, and follow his first “knee-jerk” advice (or maybe just plain “jerkish” advice) and do just as he stated: nothing.

This week we celebrated Martin Luther King, Jr.’s birthday. One of my favorite quotes happened to be made by him:

 

I think about this quote often. In dealing with the fallout of this diagnosis, I am afraid more of the possibility that I will lose my chance to effect change in this world, than I am with the possibility that I could die. I am not afraid of death, per se, but more of the method. I do not like the finality of it, or the fact that I will leave my family behind (especially if it causes them pain), but that is the extent of it. Pretty dry, I know, but we all live and we all die. What I am terrified of, have nightmares about, and pray everyday a resolution for, is that I still can leave “my mark” on this world before that time comes. It is the caliber of “stuff” that makes me cry without abandon. I want a life that I, and my children, can look back on and say that I was useful; that my life counted; that I made a difference, and that I left this world a better place than I arrived. These are all phrases for living a life of purpose. This is of utmost importance to me and even more so now that I am facing a life-threatening illness. I want to scream to the “Gods” that be, “I AM NOT FINISHED HERE YET!”

I attended a private art college late in life (40’s) and graduated with big dreams that I could use that education to bring awareness to the struggles of those with cognitive and physical disabilities. Straight-out-the gate I presented my designs to large corporations on bringing inclusion for those with autism into mainstream public places. I was on a mission; excited about the change I hoped to create with sensory-sensitive environments. But more importantly, that I was bringing awareness to an industry that didn’t typically consider this type of end-user. It was a break-through moment for exclusion and discrimination. But then something outside of my control, put a halt to all the progress we were making. “Later,” they told me. A year later, it was still “later”- and it continues to be now. Another screaming moment of, “I MAY NOT HAVE A “LATER!” But, of course, I cannot tell them that, and it wouldn’t matter anyway. The loss of momentum was a slow and painful “death” of my aspirations to make real change for the autistic community: a community in which we belong, as we have an autistic child. The realization that I will not be able to see this design to fruition is painful. Actually, I am still grieving from that loss.

I continue to speak out the best I can for the autism community – much of the time I feel as though I am banging my head against the wall. Discrimination in public spaces, schools and potential jobs, is rampant. My passion for this community runs deep; my conviction to help them pull out of the pit of injustice and invisibility still rages. However, my timing is off. The world isn’t ready yet. I always seem to be ahead of that curve. So, the white elephant in the room is, “Will I be here, and functioning, when the world IS ready?” It is a question I wake with each day, and wrestle to quiet each night, so sleep can come. I will be very sad to leave my children behind in a world that has not embraced this community.

But with illness, there are many stages to loss and grief, as this chart illustrates:

 

I really don’t remember hitting the stage of “Shock” first. I think I went straight to denial. I didn’t believe the doctors at the hospital when I was first diagnosed, because I felt good and healthy. It was a mistake, I figured, and would get straightened out once I visited a cardiologist. So, I went to a cardiologist who ordered a catheterization. After my catheterization, that cardiologist told me, almost apologetically, I had a “very weak” heart. My oldest daughter was with me, and I felt like the guy smacked me. That was when shock hit. It was fleeting though, as a smack usually is, and then my intellectual self went straight to “Testing” – asking the cardiologist a barrage of questions within minutes of diagnosing me with, what could be, a death sentence. I have lived within the “Testing” stage ever since. I am constantly looking for solutions and the doctor’s just love it when I show up with a handful of printed internet articles to discuss. This is how I cope. Coping is the skill required to navigate such a diagnosis, alongside hope. Without hope that you will come out the other side, you may as well dig that grave yourself and prepare to lie down in it.

I did float around with other stages on this list. In fact, I seem to come back around to “Anger” a lot. Maybe more than I am willing to admit here. It lights the fire in me to keep fighting; makes me question the doctors more; makes me kick down doors that would remain closed without persistence. We all need “Anger.” It serves a purpose, and I won’t apologize for it. What I will apologize for, and to my family, is the “Depression” stage I experienced. I won’t mince words here – I always thought those who lived with depression were “soft” and didn’t want to feel well. Because I felt that it was a “choice” we all made to wake each day and embrace it. Yeah, sure…what an idiot I was! Or at the very least, I was uninformed.

A couple years ago, I experienced about a year with depression. I was later to find out that it was a psychological side effect of a beta-blocker I was on. It was a horrible year. It is no exaggeration to say that my husband had me on suicide watch and that all the guns in the house were removed for my safety. I have never felt such a deep despair; and I had lived as a single mother under the most disgusting circumstances of betrayal. I would go about through my days, running errands, housecleaning, etc., and images of all the ways I could end my life would appear. You would be amazed at the imaginative ways it could be accomplished. I should have written them all down as maybe I could have laughed at myself later. I was completely irrational. In fact, my favorite “fantasy” was driving to the campus of my college, wearing a sign on my back about debilitating student loans, and shoot myself at the center entrance (as the guilt of having student loans was my main source of depression). This is when I warned you in my first blog post that things could get “dark,” but all the more reason why it needs to be put out there, because this really happens. It happens to people like me who really never had a day of depression up until this incident. And unlike popular belief – hell, my belief until I experienced it – those thoughts were beyond my rational self. It is important to say that I never thought about, or wanted to hurt anyone else in this depression – just me. At the time, I was convinced that I would be doing my husband and children a favor, as some of the student debt would be forgiven upon my death. I felt like I was making a “loving sacrifice” for them in my last ditch effort to be useful. It became my new purpose, no matter how misguided.  Obviously, I wasn’t making much sense.

My poor husband: he endured. He helped me with my struggle the best he could and, more importantly, he remained steady. Later, after I was no longer taking the meds and back to my old self, he confessed that he was absolutely mortified throughout. He said it was like watching a person he didn’t know, much less the woman he loved and married. I went from a woman he knew of as self-assured, not too emotional and rarely seeing me cry – to crying all the time and a blithering wreck: oh, and that pesky thinking of ways to kill myself all the time “thing.” Usually I have my shit together more than that. Well, at least I think I do. He was afraid to leave me at home alone or to go to work, much less talk to anyone about it. He dealt with this himself and I am sure it was quite lonely and hard on him.  This is only a small reason why he is my hero, and that I love him dearly. I put him through hell that year. I truly apologize that he had to see me decline in that way and I will do all in my power to make sure he doesn’t see me that way again. I no longer take any drugs. I would rather lose this fight with clear eyes and mind, than drag my family down that road again.

Although I still have struggles with coming to terms with my new reality, I don’t struggle with wanting to be here and fight for every day I get. My renewed sense of purpose is to let go of expectations and allow life to just “be.” This has been a difficult concept of self-awareness, as I want to run, and do, and frolic with destiny just like everyone else in life. I sometimes feel like the world is spinning without me in it; friends are in wonderful design projects, having children, grandchildren and traveling the world; and here I sit (figuratively).  I am trying to find some peace in the silence and hoping that I can have another shot at my destiny after this storm of illness has passed. For someone strung as high as I am, the wait is unbearable at times. But I still seek joy in the everyday, and beauty in learning to slow down and take notice of the necessities of life: family, spirituality, friends and yes, even purpose. Purpose may look different through the lens of illness, but still imparts the satisfying feeling of moving forward – towards something better than the reality that is today.

 

I believe I may have reached the “Acceptance” part of grief; at least I hope I have. I accept that my life has changed. I concede that my direction and objectives have been altered – for now. I still long to make the difference I intended for the autistic community and I hope I get the chance to do so. It may take me longer, and I may have new “equipment” when doing so, but my determination has never waivered and my “heart is still in it.” That passion can never be excised. Maybe I am just waiting for the world to catch up with me.

Let me start off by saying, I am definitely not pregnant. But I am experiencing a phenomenon that is mostly linked to late-term pregnancy – nesting.   I am cleaning out closets, storage units, under beds, rearranging dishes, buying new linens and throwing away any and all things; in an unusual, for me anyway, unsystematic way.   But, of course, accomplishing all this slowly, and within the invisible guidelines of my current function and abilities. I have done some research into why I am feeling the need to nest, and how that may be influenced by my current illness, and anticipated recovery. What I found out is that I am not completely alone in this behavior. I am not crazy after all.

 

 

 

Just like a new mother, I am simply trying to control my environment. This overwhelming need of providing a safe environment for our babies to enter the world connects us to not only the animal kingdom, but also to our ancestral past. It is a basic instinct of evolution: protect your home, family, tribe, flock, herd, etc. As for humans, recorded medieval history documented vast diseases, plaques and epidemics that killed thousands upon thousands of lives, and could have been prevented through basic sanitary methods. I mean, didn’t anyone think there could be a public health issue when hauling their bucket of human feces to the window and throwing it out into the streets? Eeeww! I would never leave the house! Especially with a baby! In fact, I still remember my grandmother telling me while pregnant, that I should never take my baby outside without a hat covering her ears or socks on her feet. In fact, she said never, ever, take her out of the house until she was at least 3 months old because of germs. I assume this was something her own mother, or grandmother, told her and she passed it along. The general lesson is this world is a dirty one, and we must protect our vulnerable children from it. Indeed. **fingers snapping**

But, again, I am sure I am not expecting a child, so how does this translate to me? I dig deeper into research. I love research. It makes me feel like I am moving towards something that can offer some enlightenment. It makes me feel like I can have a better understanding to my situation. In this case, on illness, on trying to find some control in a situation where I have none. In making sense out of something that makes no sense. That synopsis is a bigger one than I planned on discussing in this post on nesting, but it is fair to say that in all matters, research is therapeutic to me. I find in this research, that mice respond to many issues much like humans do, and are why they are used for scientific studies more than any other mammal. Scientists have concluded that when offering injured mice nesting material such as sticks and leaves, it helped reduce stress and for them to heal from wounds quicker.  For mice, nests are used as a shelter from predators, a retreat from harsh environments and a protective insulator for their young. I surmise that this is not much different than what my own desires are. I want to get my shelter ready for something I have no idea how it will play out. I want my children “insulated” from that experience. But even in its simplest terms, I want my home ready for those who will help me recover. I want my home ready to help me heal from my wounds. This house, and its contents, is not only the safe place that we created for our children, this is MY safe place. I need it ready for what is next in my journey with heart failure. That readiness comes with the need to declutter, reorganize, reexamine and refocus. Because, maybe, just maybe, something good, or something better, may happen too. This is the point where “hope floats.” In order for us to receive this good “thing,” I need to let go of other “things,” old “things,” worn out “things,” loved “things,” tried and true “things.” So that there’s room for new “things.” And so I am ready for it. The analogy being that I am told that my heart is just an organ, just a “thing.” However, I don’t buy it.

If the body is a house to your soul, than what is the heart? Ages of symbolism conclude that the heart is recognized for love, romance, compassion, empathy, courage, creativity, kindness, sympathy, will, affection; amongst other flourishing synonyms. In Egypt, the human heart represented life-essence and was the only organ left in place during mummification. They believed the heart organ was the center to a person’s being – first part of man to actually live, and the first part to actually die. At a young age we are told to rely on “our heart” to assess situations, life and ourselves: to determine our innermost feelings. That when talking to someone “heart to heart” that you are speaking to their true selves, and them to yours. That getting at the “heart of the matter” is getting to the essential truth. These are symbolisms that are deeply rooted in our psyche and hard to ignore when facing an operation to remove such a vital organ: but also a vital part of ourselves: our identity, our own “truths.” I know that rationally it is an organ, and a diseased one at that. But just like the biblical story of Samson, who God bestowed on him great strength, which he lost when Delilah assisted in cutting off his hair, I am a believer that my strong “heart” is what makes me who I am, and what will happen to the strength it provided, once it is gone? After saying that irrational fear out loud, I do acknowledge that the “heart” is only a symbol.

As a scholar with a fine arts degree, I am educated in that symbolism is only an object, representing an abstract idea or belief, and can have different meanings for different people. It can also imbue objects with a meaning that is different from their original function: in this case, a anatomical heart. Intellect tells us that a heart is just an organ, a “thing.” But metaphorically, I am proud of my “heart” and how hard I have fought for it to be as strong, assured and kind, and how much I depend on finding my “center” there in times of vulnerability and doubt. Symbolically, I am sad to lose it. I am working on coming to terms with that anticipated loss. Maybe all this nesting goes deeper than house cleaning? Maybe it is a way to create a new physically visual “nest” in preparation of an internal one. Either way, I will be ready; attempting to be brave and open to new “things.”  I am sure that is what my “heart” would want me to do.

 

After months of sending medical records and going back and forth with hospital transplant centers and my insurance company, I have received the news that I was accepted for an initial consultation. Yep, three months of toiling and I get an appointment.

Three months ago my regular cardiologist cancelled my appointment with him, yet again, and I was advised it would be at least 2 months to reschedule. After a year with this cardiologist, many appointments had been cancelled; including one where I was in the hospital and ready to be geared up for a medical procedure. I was told (hush-hush) with the appointment admin that this was a huge issue at the practice. Anyway, I had reached the point of being disgusted and decided I was no longer taking his shit. I called the supervisor of his practice and voiced my dismay at the length in which it is taking him to evaluate me for a referral to a specialist, as that was the next step in his failed attempt at “fixing” me. I stated the obvious, but some-what inflammatory, accusation that unless I was able to see him, he was effectively putting my health in jeopardy and therefore, all the delays were being documented by my family. That got some traction. By the next day, I had my referral.

The referral was for a hospital transplant center that I requested. The transfer of my medical records was botched at first, being sent to the wrong department, but after a couple days, the transfer was complete and then a week later, I was approved for an initial consultation and had it scheduled. Easy-peasy. This hospital transplant center had received my records a year before when I was referred by a different cardiologist. At the time, I felt I wasn’t ready (aka: chicken-shit) and didn’t follow-through with it. That referring cardiologist left the State and I had to seek a new one; who upon meeting me the first time declared it was silly and presumptuous to refer me for a heart transplant. Great! I was to be “fixed” after all! One day they tell you that you are dying, the next day, it was all a farce. This is the ups and downs of heart assessment; the process is exhausting. Anyway, one year later, this cardiologist too has raised his white flag of defeat and referred me out. I am an ass, and should have gone through with it the year before. Live and learn.

So I have an appointment for a month later and all is good. I am FINALLY going to be seen by a heart failure specialist. I live in Southwest Florida. There are no heart specialists in all of South Florida so this is a big deal. I am content we are moving in the right direction. And then, I receive a phone call from the insurance company. This person, she tells me, is my personal claims assistant. Because potential heart transplant is an expensive surgery (1.3M) and recovery ($??), all my insurance “hoops” are now guided by the experts. Of course, they are watching their money too. In one fell-swoop of this phone call, all my plans were fuzzy again.

Insurance is an intrinsic part of planning – unless you are very wealthy. I was told by my personal claims assistant that the hospital transplant center I chose was a two-tier and not a top-tier center. That is insurance-talk for, “we don’t like that center and we want you to go to this one.” Her explanation was that the top tier one has a better success rate. I like success rate percentages, so how could I argue? What this meant for me financially was that the coverage (after my deductibles and out-of-pocket was met) at the first chosen transplant center, the surgery and recovery would only be covered at 70%. In real-life cash terms that meant at the minimum, $400,000 out of pocket. Yeah, um, I don’t have $400,000 in my bank account right now. Also they would not cover the LVAD, if I decided on that procedure, or travel and lodging. Lodging is important, as some have to live within a certain distance from the center to be in the transplant program. Therefore you have to rent some place to live. This entire endeavor is a very expensive one, and for someone like me who has closed their own business, been unemployed and with very expensive student loans looming, this is a huge problem. Especially when the guilt of placing your family in financial distress is more disabling than the heart condition itself. Guilt is another post entirely – but the struggle is real. I keep telling them to “push me down-river” to no avail.

So, I needed to consider a different hospital transplant center that was top-tier, again told, with bright shiny carrot dangling, a “better success rate” and would be covered at 100%; LVAD included and travel and lodging expenses all at 100% (after all deductibles and out-of-pocket was met). This carrot did, indeed, appear more delicious. We will see after I actually get to taste it though.

With this new direction, I was starting all over with medical records and coordinating an already pissed-off, unstructured local cardiologist office (who was probably happy to be rid of me), to transferring all my records again to a second place. They were none to pleased. This process, even though it was over Thanksgiving and Christmas holidays, still took forever. The difference between this center and the last, was that the doctor was going over all my medical records to determine if they even wanted to see me. Their referral specialist explaining that they are “far too sought after to just accept everyone for an appointment.” He asked for some supplementary CD’s of my echo and my MRI, and a detailed report of my sleep study. The request for a detailed sleep study was interesting, as even though I was diagnosed with moderate sleep apnea last summer, no one has given a second glance to it. With hope, I think maybe this Center will be more thorough in assessment. I have still to receive the echo CD, as I am dealing with imbeciles, but I was granted an initial consultation for 2 weeks from now. I will have to get a new chest x-ray and blood work next week before I go. Chest x-ray is to see if I have plural effusions in my lungs and enlarged heart (congestive heart failure) and blood work as a way to rule out other conditions. Of course, no one has told me this is what they are exactly looking for, but after 8 years, I am somewhat self-taught.

Not sure if “excited” is the right word about getting through the first “hoop” but I am grateful to get this opportunity at seeing someone with expertise on my condition. Now, “lets not get ahead of ourselves” yet though, as my insurance rep tells me today, because this does not mean I have been accepted into the heart transplant program (this is important to note financially as none of the 100% coverage sets into place until you are accepted into the heart transplant program. All insurance deductibles and coverages, up into approval into the program, is your regular medical coverage). This appointment just means they will consider it. It is a first “date” if you will, which most likely will lead to many other “dates” but not necessarily to marriage. Which is ok, as I would like to see how much we accomplish with “dating” first. I am not ready for a commitment either. I would like to know my options and see if there are better proposals. Maybe LVAD, maybe something else, who knows? I am not the expert but it seems to me that there could be shinier carrots out there: maybe none of them diamonds, but I have never been into “all that glimmers” anyway.   I like substance, with clear goals and reliability – in my men, and in my cardiologists. Let the dating begin.

 

 

** I have a background in law, and so that education has taught me not to share here the names of the hospital transplant units or the doctors.

 

The most common question I receive from those in the medical field, and those with heart conditions themselves, is, “What is your EF?” EF is an acronym for ejection fraction. In layman’s terms, the ejection fraction is simply calculated from the volume of blood being pumped into the heart and then ejected.  This measures your pumping ability and determines your overall heart function.  The following chart shows the diagnosis of your percentage.

My current number is 34%. It is important to note that your ejection fraction changes constantly, somewhat like your blood pressure, as there are many variables to make it wobble some. The important issue is the trend in which your EF is heading.  I have been diagnosed as high as 45% and as low as 21% in the past 8 years.  I would also say that it depends on the testing used to determine the EF.  An echocardiogram is the most commonly used diagnostic tool to determine EF, but is only reliable if the radiologist gets a good film and that the doctor reviewing the film, is any good at reading them.   I have been told many times that my films are “hard reads” and so I am usually sent to have a MUGA scan or a cardiac MRI to substantiate my heart function.  My last EF determination was calculated during a 3 hour MRI, so I am confident in that assessment. However, that was 8 months ago so who knows what it is currently. I will be getting another echo done shortly.  Do not get fixated on your EF.  I spent many years doing that and I always leave the office feeling duped. The appointments where I was sure that the EF had improved because I felt well, was able to exercise some, were always the lowest numbers.  The appointments where I felt like getting out of bed was a monumental effort, those were the highest numbers.  EF is a fickle bitch and she is just out to crush your expectations. Go with the flow on this. Just like receiving tattoos, (you know where people say the ribs hurt worse than the back. NOT FOR ME!) functionally we each respond differently to our EF.  For example, some may not be able to walk across the room with an EF of 20%, but others are still working and functioning somewhat normally.  I know from my own experience that I have felt like my functions were slower at a higher EF than I anticipated.  It all just depends on what other heart ailments that are going on, your fluid retention at that time (salt must be limited) and your activity level.  It is an entire “spa package” of delightfulness, with each “treatment” as intrinsic as the next in your “experience.”

Ok, so onward with my list of “deets” that I am currently experiencing.  I am going to breeze through these in a bullet-like fashion without explanation of each.  You can look up the details on your own if interested, or I can answer any questions in the comment section.

• Nonischemic Cardiomyopathy (Viral)
• Severe Heart Failure – 34%
• Ectopic Heartbeat – extra heartbeat
• Aortic Valve Regurgitation – Moderate
• Aortic Valve Sclerosis – Mild
• Pulmonary regurgitation – Mild
• Mitral Valve regurgitation – Mild
• Tricuspid Regurgitation – Mild
• Hypertrophic Cardiomyopathy – Left Ventricular Dysfunction
• Paroxysmal Supraventricular tachycardia
• Aortic Root Dilation
• Sleep Apnea – Moderate (contributes to heart failure)

I probably missed a few minor things, but you get the gist.  My heart is a leaky basket case and pumps at the ability of an 80 year old.  I should name her Estelle from Golden Girls.  But, some would say, “You are not hospitalized or dying, just yet, so why the referral for a heart transplant?” My cardiologists have determined that there is nothing more they can do for me.  I do not have a “smoking gun” such as a blockage that can alleviate my issues.  In fact, I was told my heart arteries are “clean as a whistle.”  I have damaged heart muscle, caused by a cold virus, which affects my ability to pump effectively (and the other items I listed which are secondary).  Also, lets say they wanted to replace my aortic valve and that would mean a risky open-heart surgery.  That procedure would only scratch the surface as to my overall problems.  They want the fix to be a “one and done.”

The cardiologists have always scratched their heads on my specific diagnosis, and treating women with cardiac issues in general is something I could debate all day.  I will spare you on that debate, but I will say that the doctors have always been quick to just point me in the direction of a heart transplant, as this is not my first referral for one.  I am not sure if it means I am a hopeless case, or that they lack the experience and/or “give a shit” to reach further into their PHD’s to find me a cure.  It could just be a liability thing as I was told by the first cardiologist I had, “Women like you scare me, because you die on me.”  He wasn’t my cardiologist long after. All I know is I have been running away from the direction of heart transplant for years, but feel that my “opportunity slot” to do so, is narrowing.  I guess the time is now. Anyway, there are more hoops to travel through than marrying your mother’s daughter on receiving a heart transplant.  There are many people who are sick and the transplant centers only operate on a handful of them.  The transplant center I am currently “dancing” with does approximately 55 a year; and hundreds are applying for them, such as me.  The process to get approved for such a surgery is VERY long, ranging in diagnostic tests such as a heart biopsy (my big fear) to psychological evaluations on whether you will take care of your new heart properly.  Also there are prerequisites: you have to be sick enough, but you cannot be too sick. That is the fine line in which I am currently hovering.  You cannot have any other diseases or conditions. You can never have had cancer.  You cannot be over the age of 65. You cannot have been a heavy drinker, smoker, drug abuser or criminal.  There are also some restrictions on the disabled which I wont get into on this post, but I guarantee it will be something I post on later.  Most importantly, you must have a high probability of success rate at recovery, as they don’t want the gift of donation to be wasted.  The vetting process is rigid and I will post on it as I go along, if I even get accepted.

Although I am in the heart transplant evaluation stage, I would also like to explore the possibility of keeping my own heart and having a Left Ventricular Assist Device (LVAD).

The LVAD is essentially a battery-operated mechanical pump that is implanted inside the chest to help a weakened left ventricle pump blood to the rest of the body.  Unlike a total artificial heart, the LVAD does not replace the heart entirely, it is a bypass tube of the left ventricle.  The weird thing is that you will not have a heart beat anymore. Some use this device as a bridge to heart transplant, and some use it as a temporary fix until the heart can heal again.  Yes, some heart failure can heal, but after 8 years, I have been told mine will not.  Then there are people like me who can use the LVAD as a permanent way to alleviate heart failure.  It is a rough option; as you will carry battery-packs with you for life (approximately 15 years, which is the same longevity of a organ transplant).  I would also find it difficult living in Florida and never swimming or taking a bath again as required, as the device has an external port in the abdomen to the battery packs and cannot get wet.

But there are just as many positives as negatives in the choice of an LVAD, and all the choices we make in this journey.  Let’s get one thing out there though, none of the choices are particularly good or exciting ones, but it is those choices or a slow demise.  We each will have to choose inaction, or action.  Your life situation is the best way to do that, as I feel if I didn’t have children that my choices would be different. But I do have children who still need me, so I must act.  I must teach them that when life gives you a struggle, that you meet it; chest puffed out and with determination to win. And if I cannot win, I must show them how to be brave in the face of it – even if I am scared shitless.  As a mother, I know what it is like to teach my kids to live, and so I believe that if that time comes, I must also teach them how to die; with dignity, with their sword bloody and with a gleam in their eye. I have no idea how to do this yet, but it has become my new aspiration. Ok, this just went deeper than I intended. Enough for today, I think.

 

 

Hello all. My name is Cheryl and I have heart failure, and my last heart ejection fraction measured was 34%. Woah, did that sound like I am about to sit in an AA meeting? Hahaha! No AA meeting here as heart failure patients cannot drink or do illicit drugs. I am somewhat addicted to Slurpees however; living on the edge, right? Anyway, before I tell you all my dirty secrets, let’s start at the beginning.

March 2009, I turned 40 years old. I was in the best shape of my life; running 6 miles a day, eating healthy as a pescatarian and even shunning the beloved Slurpee. All was well and my husband and I just returned from a trip to Orlando sans children. (photo from our trip) I was happy because I felt healthy and just good: really good. Until “it” happened and my life would never feel healthy again.

It was a Saturday, and after eating my leftovers of dinner the night before (pasta with garlic marinara) I started my regular chores of cleaning and laundry. My adult daughter Brittni happened to be at the house and we were chatting about some projects when I felt as though my chest was burning. Heartburn, my husband concluded, from the mounds of garlic infused pasta I had just eaten. It became increasingly obvious that it was to be the worst heartburn of my life within minutes, and so my husband grabbed his keys and rushed to the CVS across the street to retrieve some antacids for me. Brittni was left to deal with the fall-out that came next. After the feeling of a burning chest I felt a huge need to empty my bowels. After that my face went numb and spread to my lips. At this point I was on the floor because I was afraid I would lose consciousness and fall to the floor. I was sweating, breathing rapidly and losing my ability to think. The worst was still to come: the vice-like grip that wrenched my heart came in waves. It felt something like labor pains; that ebb and flow, except it was my heart muscle. It would squeeze, let off, and then squeeze even harder, with about 5 seconds in between. While this is happening, Brittni is googling my symptoms and came to the conclusion that I was having a heart attack. In true Bryan fashion, as he cannot make a trip to the store without calling or texting me multiple times for details, he calls to ask me what flavor of gas chewable I would like when Brittni yells at him to come home and take me to the ER.

By the time Bryan arrived home 5 minutes later I was in agony. Our hospital is literally in our neighborhood so there was no need for an ambulance. We arrived at the ER with me writhing in pain (embarrassingly so) and were taken back almost immediately. I remember the nurse being really condescending, as she thought I was having an anxiety attack. Within minutes I was given nitroglycerin and just like a light switch was turned off, the pain was gone. After some tests, I was told I was suffering from cardiac spasms. Never even heard of such a thing. I was then put in an ambulance to our Cardiac Specialist Hospital for additional testing. After a cardiac catheterization, I was told that I had heart failure, at 40 years old, in the best shape of my life. Everything since that day has changed the way I feel about my place in this world; made me realize how precious life is; how fragile our bodies are and how everything can change in an instant.

This is how the story of this blog begins. I cannot possibly sum up the last (almost) 8 years living with this condition; other than to say there has been much sadness, futility and anger. But I also found courage and hope; a renewed purpose; acceptance at my new pace, all the while trying to live fully and laughing as much as I can each day. Humor is a necessary part of living with such a condition. I use humor with nurses so they poke my veins with a little more accuracy; with the doctors so they care enough to dig deeper into saving me; and with friends and family members so they don’t see how scared I really am. Part of this burden is that I cannot bear to see them worried, so you make light of it all, and don’t announce every pain or increased effort at just going about your day.

I could not find any other resources to help me with my journey and saw a need on the internet for such a blog. I am doing this blog for me to have a place to say what I mean without filtering it for my loved ones, and also to help those who are facing similar circumstances in the future. There are very few outlets I can think of outside of this medium that allows raw and open discussions about things nobody in polite conversations want to talk about: life with a debilitating disease and even death. This blog will talk mostly about “living” with this condition and the options that come with that. I also hope to document all procedures I endure to prolong my life. Maybe I will receive an LVAD, or maybe a heart transplant. This is still to be determined. But we also must discuss death and demystify the “boogeyman” in the room. I hope that my humor will keep all my thoughts, even the inevitable dark ones, honest but enlightening.   I appreciate all who take this journey with me. And for those who are going through the same journey – take heart, as you are not alone.