Mental Health: More needs to be done

This is my first blog in a very, very long time. I have been busy surviving, living life and trying to make sense of the world these days.

What moves me to write today, is a recent experience I have had in the realm of Mental Health and getting the help I need.

For those of you not familiar with my story, I survived an unexplained Sudden Cardiac Arrest in January of 2012 that resulted in the implanting of an internal defibrillator. The next 3 years was a horror story of problems, medication changes, heart stops and ultimately shocks from my device. Over 120 times. I have been “stable” now for just over 2 years but my mental health issues hang on tightly, I just can’t seem to get past the trauma. For the past 5 years, I have struggled with Severe Anxiety, Post Traumatic Stress Disorder and Depression. While I have some of the best arrhythmia experts in their field responsible for the care of my heart, finding the help I need within our Canadian Health Care System to deal with the mental fallout has been a disaster.

There was very little in respect to mental health resources available to me in the big city of Vancouver, one on one therapy to get the real help I needed was available for upwards of $150.00 an hour, impossible on a fixed income. I could find cheaper therapy, but it entailed students working towards their degree and they were available to me for a few weeks or a few months at best, then I had to start all over with a new person. I was able to take advantage of some art therapy, which I found very helpful, but that was very short term as well. It’s been very frustrating especially with all the awareness being raised around mental health issues these days.

My husband and I recently relocated to Nanaimo on Vancouver Island, we were desperately in need of more affordable living, some peace and quiet and although it meant leaving the safety net of doctors and hospitals who intimately familiar with my history, we really didn’t have much choice, we had to go somewhere else.

So, enter a new Psychiatrist. In order to take advantage of the mental health resources available in our new city, I had to be referred into the system here in Nanaimo. The wait time to see the doctor was 2 months, to date, I have only been referred to a Cognative Behavioural Therapy Group it’s only been 2 weeks so I can’t attest to it’s effectiveness. Last week, I had a followup visit with the Psychiatrist after 4 months in the system, our conversation is the reason I have felt compelled to write this blog….

I should also mention that an anti-depressant named Cipralex was one of the culprits assumed in the cause of my Unexplained Cardiac Arrest, the drug, as some anti-depressants do, lengthened my QT Interval and my current heart drug Quinidine is not very compatible with other drugs.  I am ABSOLUTELY TERRIFIED of taking any additional drugs, so, imagine my surprise when I was presented with a prescription for Lamotrigine along with a study assuring me that this drug did not prolong QTc. As I sat there horrified at the thought of having a drug I did not want or ask for pushed on me, the doctor talked glowingly about all the good things it could do for my anxiety.  “It has been known to erase all PTSD symptoms” he said. This drug is used to treat epilepsy and when it was discovered that it made people taking it “happy” they decided to try it on patients with Bipolar disorder.  The drug comes with a Black Box Warning about life threatening skin reactions such as Stevens-Johnson Disorder and other horrifying things. Sign me UP!

I find it totally irresponsible for a doctor to give a patient who has been through as much as I have and has been told of the consequences I face by taking a drug that is not compatible with my heart medication to hand over a prescription and expect me to willingly have it filled.  He seemed quite surprised when I told him NO!  He told me he thought my only criteria for taking something was that it did not affect my QT interval.  WRONG!  He seemed quite proud of himself for finding the “special” drug just for me!  WOW!  So much for my hope of finally getting some of the help I so badly need.

This experience has been my call to action, I think that the mental health system has it all wrong.  I know there are people out there who require medication, I used to follow along until I died that day on my dining room floor, but I will no longer be are part of this “drugged” society.  I think they should offer more yoga, meditation, mindfulness, music and art therapy classes and encourage people to spend more time out in nature while they get their free “one on one” help to fill in the gaps and less medication. Kids should be taught these coping skills as soon as they start kindergarten, it will help them be more resilient as they grow up and allow them to have some tools as adults, just in case a curve-ball is thrown their way. It would take a huge burden off of the health care system.

It was a light-bulb moment.  I have to stop relying on a system that has failed me and take matters into my own hands.  I will have to search out the support I need myself, if I wait around for it to help me, I will never get better.

wish me luck.

 

and another year comes to a close

I am feeling very emotional today, I can’t seem to stop crying, but they aren’t tear of sadness, they are tears of reflection and gratitude for last year and tears of hope for the future.

I lost my Dad this year.  He physically left this earth on April 9 of 2015 with his family by his side, but he had left us mentally long before that.  He had Alzheimer’s and had quickly slipped away from us into his own world where he no longer knew our names.  The disease took him quickly and not a day goes by that I don’t think about him and I miss him more than I ever could have imagined.

I have had a year of relative stability health wise, that’s not to say that there haven’t been challenging days, but no shocks from my device is a good thing.  I still have days where I am tired and end up sleeping a lot, days that I am afraid to leave the house and days that anxiety is super high but I have managed to accomplish some pretty cool things despite all of that.

In 2015 I became a volunteer.  Last April, I helped raise funds for The Art Studios a place that I love and believe in, they have been there to help me face my issues with Mental Illness by offering free art therapy and a safe place for me to learn and be creative.  They have gotten me out of the house during times that I would not have made the effort and I have been able to lose myself in painting and pottery.  I am a better person because of art.

I also became a Patient Voice.  I have been given a couple of opportunities to contribute my voice and experience within the health care system to help makes things better.  One of the things that I am very proud of is sitting on a committee of dedicated human beings who want to make screening for people and families at risk of Sudden Cardiac Arrest more accessible.  I am fortunate to live in the city of Vancouver where I have access to the very best doctors and clinics, there are many people across Canada who do not have that same kind of access.  The goal of this committee is to make the experience of all Cardiac Arrest patients universal across the country, allowing them to be able to get the resources they need and to get tested for the many Inherited Rhythm Disorders in order to save lives.

I was also asked to contribute as a patient voice to a monthly newsletter called The Inherited Heart Rhythm Times.  My very first article was on Stress and Creativity.  It was a cool moment for me to see my little article in print and to know that people enjoyed reading it. These are the things that help me feel productive again, they don’t require a lot of my time, but it helps me to know that I am giving back and helping others and  I am focusing on good things.

The very best thing is that I found a way to soften some of the hard places within myself that I have built up over the years and learned to LOVE more.  I have learned that gratitude is a preferable way to live my life and that even bad things have a silver lining.  I’m still not perfect, but life feels a whole lot more hopeful when you embrace the positive.

So, today, tell the people you love that they are important to you, look in the mirror, deep into your own eyes and tell yourself you are perfect as you are and forgive all the wrongs you think have been done to you.  Let it all go, wipe the slate clean, start the new year fresh and put your whole heart into it.

2016 is going to be an awesome year.

Eight months ago yesterday…

Eight months ago yesterday, I had my new ICD implanted after a very hairy experience in Victoria.  I suffered a lot of shocks and suffered a lot of trauma during the 5 days that I was there, but here I am, 8 months later, shock free.  Thankfully.

It’s a feat yes that the time has passed, but it has not all been easy.  There are nights when I am afraid to go to bed and days that I am terrified to leave the couch.  I still have many, many, sometimes hard PVCs  and although my device has been checked a few times, there is no record of anything sustained.  Doesn’t mean I don’t feel them and that they don’t scare the bejeezus out of me.

It’s hard knowing that at any moment, things could go wrong.  One beat in the wrong direction, and I reset to zero.  I try not to dwell on that though. I think that my biggest fear is that something will happen during the night, and for some reason, this new device, yet unproven will not do what it is supposed to do.  My next biggest fear is that it will happen on one of those rare times that I do something on my own, and someone will hurt me while trying to help, or that I won’t get to a safe position in time.  So many bad scenarios run around in my head, so much anxiety and stress around all of this.

My experience last December did a lot of psychological damage that has not yet subsided.  PTSD rules my world and it’s hard to forget all I have been through.  I have flashbacks, nightmares and even a few phantom shocks where I wake up startled feeling like I have been zapped.  Even smells sometimes will set me off and I am very intolerant of noise of any kind.

Now,I have to pay attention to how hard I push myself.  I can’t get too tired, too stressed, too eaten up with anxiety or my heart rebels.  I have to be super compliant when taking my meds every 6 hours so when that alarm rings at 5 am I can’t just roll over and go back to sleep,  I have to take that pill. I have become super vigilant with my body, I feel and analyze every single thing.  I am tired, all the time and often need to take afternoon naps.  I get these dark circles underneath my eyes, I know it’s time to stop. It’s hard to just…be.

Gratefully, I have found a few things to help me get through the tough times, art, meditation and spending time in nature.  Also, I have an amazing partner in my husband, who puts me often before himself, he makes sure that I don’t sit around feeling sorry for myself.  I still don’t do much on my own or spend much time by myself, I don’t have that kind of confidence yet and wonder if I ever will again.

I do know that am a better person because of all of this. I am learning to focus more on the positive things and to show myself compassion when I am feeling scared and angry.  I am learning to listen to my body and to rest when I need to. I am taking better care of myself which is something I have always had a hard time doing.  I am seeing the silver lining in the things that have happened these past almost 4 years.  I am learning to live like there is no tomorrow.  I have a much softer heart, a more forgiving heart, a more loving heart these days.  I am changed.

It’s been a long, hard, interesting journey, but I am getting there, slowly but surely.

P.S.  One of my most fav songs by Jann Arden is called “Saved”  I have not been saved in a religious sort of way but I have been saved from myself and a life that I have often seen in a negative light.  These lyrics always make me shed happy tears because I feel like I am finally becoming the person I was always meant to be.  It’s never too late.

“Saved”

Lived a good life
Lived a sweet live
Oh, I’ve had the sun on my face
I had fallen to my knees and been amazed
I have walked beneath the brilliance of a perfect sky
Oh I am saved
Saved
Lived a good life
Lived a sweet life
Oh I have a beautiful friend
I am breathless from the mercy of a smile
I am standing on the brink of the most perfect love
Oh I am Saved
Saved
I am saved
I believe
I am not going to be like I was
I have changed
I am saved
I have bitten off the pieces that I did not want
I have torn them into tiny bits of rain
Oh the sun has dried those memories like I knew it would
Oh I am saved
SavedI have bitten off the pieces that I did not want [2x]
Yes, I am saved

Writer(s): Jann Arden Richards

I Forgive…

I didn’t write this myself, but it’s something I have been saving in my “notes” file.  Obviously, my intent was to pull it out and read it on a daily basis, but that hasn’t happened, it should be though.  I work regularly on gratitude but forgiveness is a very important thing, not just to forgive others, but to forgive ourselves as well…it just takes away a terrific burden from things that we fret about each day.  I know I beat myself up for many reasons and I know I need to work harder at being kinder and gentler to myself.  There are quite a few in this list that ring true with me.

So, here it is…let me know what you think.

We commonly think about forgiveness as something we give to others. This is true even when we know we are forgiving others for our own sanity. However, we often forget to afford the same courtesy to ourselves.

When we hold ourselves accountable, we acknowledge the roles we may have played in current circumstance. In doing so, many people mistake this acknowledgment for self-blame.

If that describes you, it’s time to release the weight of the burden you’ve been carrying. Here are 25 things you need to forgive within yourself.

1. I forgive myself for not trusting my ability.
2. I forgive myself for ignoring my instinct.
3. I forgive myself for the times I was ungrateful.
4. I forgive myself for not taking better care of myself.
5. I forgive myself for inviting drama into my life.
6. I forgive myself for rejecting unconditional love.
7. I forgive myself for hiding the uniqueness of who I am.
8. I forgive myself for not believing in my dreams.
9. I forgive myself for resisting growth.
10. I forgive myself for letting fear stop me in my tracks.
11. I forgive myself for being envious of things that belong to other people.
12. I forgive myself for not always making optimal decisions.
13. I forgive myself for holding on to past hurt.
14. I forgive myself for hating any part of my physical appearance.
15. I forgive myself for believing the people who didn’t believe in me.
16. I forgive myself for taking my gifts for granted.
17. I forgive myself for following society’s standards without thinking.
18. I forgive myself for settling and accepting less than I am worth.
19. I forgive myself for the times I was hypocritical.
20. I forgive myself for hurting the people that love me most.
21. I forgive myself for intentionally dimming my light.
22. I forgive myself for not always speaking my truth.
23. I forgive myself for getting in my own way.
24. I forgive myself for doubting my innate Divinity.
25. I forgive myself for playing small.
What other things do you have to forgive?

My heart drug is an orphan?

As you know, December and my procedure did not go even remotely like we thought it would, it has been extremely difficult getting over that experience.  I work at it every single day, squashing back the daily fear and anxiety that has become an all to familiar addition to my daily life, some days it works, others not so much.  At the 6 week check-up on my new device, the subject of switching to a new experimental drug was approached, a drug that was used to treat another disease that was recently found to be somewhat successful at treating patients like me with Idiopathic Ventricular Fibrillation, my answer was and emphatic NO.  I was no where near either physically, but most of all mentally ready to venture into uncharted territory once again, just the thought of another shock put me over the edge, the thought of it would almost put me into hysterics,  there was no way I was having any part of the unknown, I took the “wait and see” attitude and decided to take my chances on the bumped up dose of my existing medication, Quinidine.

 

That was January 23.  On that day, I took my amended prescription to the pharmacy and asked them to fill it right away.  Quinidine is a special access drug, meaning that every time I need to have it filled, there is special paperwork that has to be forwarded to Health Canada in order for the hospital to bring it into the country for me.  I never know how long that process is going to take, so I always leave myself a lot of leeway just in case there is a snag somewhere, it’s happened before, lesson learned.  After waiting a couple of weeks without a call saying “come and get it”, I called to see what was taking so long and to my surprise was told that they were no longer able to get a supply,  it was on back order.  *face palm*  back order?  ffs.  I took quick stock of my supply and figured I would have enough to last me for 2 weeks, plenty of time I told myself.  Every day I did the math, after all, I know all too well from my experience at Christmas that I would be in trouble about 24 hours after stopping the drug, there is no way I wanted that to happen again.  When I got down to 5 days left, I had a discussion with one of my Cardiologists as to what the game plan was and his explanation of the situation did not make me feel any warm and fuzzies.  This first part I already knew, the drug that keeps my heart from going all arrhythmic is on the worldwide shortage list, it is an old school drug that has been replaced by new and supposedly improved drugs which my heart does not like and do not work for me.  In short, my drug does not make enough profit for pharmaceutical companies so they can just arbitrarily decide to stop making  it, never mind that it is saving some lives.   It’s also referred to as a Orphan drug. These drugs help people with rare diseases such as mine.

 

Here is a little excerpt from Wikipedia “Since the market for any drug with such a limited application scope would, by definition, be small and thus largely unprofitable for pharmaceutical companies, government intervention is often required to motivate a manufacturer to address the need for an orphan drug.”  According to an article in the Vancouver Sun dated January 18, 2013, “Canada is one of the last countries in the industrial world without a policy”.  The government’s Health Canada website says in a press release from October of 2012 that “a modern framework for the designation, authorization and monitoring of orphan drugs that will provide a significant benefit to Canadians with rare diseases and spur research and innovation in Canada.” and “The proposed framework is in the final design stages and will soon be targeted for public consultation. Comments and feedback gathered during the consultation will be incorporated into a final version of the proposal.” but there is no update to this page which leads me to believe that this framework has never gone any further in it’s development.

 

So, back to my conversation with my Cardiologist.  They recently stopped production of Quinidine in the US  where my supply was coming from, leaving them with two European suppliers to approach.  He worked the phones talking with Health Canada as well as some higher ups in the drug companies still making my drug and the first supplier, in Italy I believe, was unable to supply Canada, they just did not make enough, he then called the 2nd company, in Egypt, the plan was for them to supply the drug and we could expect a supply to arrive “in a perfect world” the day after my personal supply was to run out.  In the meantime, the pharmacy had a number of tablets that had expired and the doctor agreed that we could use that supply to hold me over until fresh supplies arrived.  I picked up a prescription for 28, enough to last me 7 days which based on the information, would be enough.  Today I am down to 8 tablets, I will be out as of 11 pm tomorrow night.  Needless to say, I have been freaking out, my bag is packed and I was ready, willing and able to park myself on the doorstep of the Emergency Room until they admitted me starting tomorrow night.  I was awake at 5 am this morning, very high anxiety, I could not sleep.  I finally got up and I watched the clock tick down until I could call my Cardiologist’s office to let them know that I was almost out again, WHERE IS MY SUPPLY!?!?!  At 1 pm today, I got a call back, they had found another 50 expired tabs in stock, the pharmacy would call me when they were ready to be picked up.  I was also told that they were still working on a regular supply, honestly, I really don’t want to have to get on this emotional anxiety roller coaster again, which is highly possible if they don’t get a reliable source worked out somehow. *fingers crossed*

 

The past weeks have been tumultuous and stressful, I have not been able to focus on very much, it’s so hard not being able to control what is going on and making any kind of short term plans hinge on will I be able to meet the commitment.  I take one day at a time and take the fun when I can.

 

When I think about all the stupid shit I used to worry about before all this happened, I give my head a shake, I had no idea that there were far more important things coming, like, “will I be able to get the drugs that keep me alive? It really puts things into perspective, and I want to remind you again to be grateful every day you open your eyes and never take anything for granted.  Oh, and laugh LOTS!  even if it is at yourself!  and LOVE like nobody’s business!!!

 

I want so bad not to be a hard luck story going forward, I am trying hard to stay positive, and to see the silver lining, but man, some days it is just not possible.  I will continue to fight, I will continue to lend my voice any where it can be heard for the cause of the orphan drug and I will continue to share my story in hopes that it will help someone else.

 

“get on with your life” they say…well, I’m trying to, I just have to keep dodging these roadblocks.

 

Thankfully I am resilient.

 

 

 

 

 

 

What doesn’t kill you makes you stronger…

The shocks started at 6:50 am.

 

I wanted to text my husband at his hotel to let him know I had a good night and that I was awake.  I sat up in bed and noticed out of the corner of my eye that the red light on the monitor was going off, upon looking closer, my heart rate was over 120 beats, I was surprised but sat on the edge of the bed until it came down to around 60.  I needed to get my cell phone out of my bedside closet which required walking around my bed and digging through my bag, I no sooner reached the closet and opened the door and I realized that I was in trouble…I felt my heart jumping like jello in my chest and needed to get myself safe or I would end up on the floor and possibly injured.  I jumped over the rail of the bed and just as I hit the mattress, I got the first jolt from my ICD, I was awake and it hurt like hell.  I liken it to someone holding a large elastic band, one end on my chest as they pull it out as far as it will go, then they release it, it’s like a really hard snapping feeling.  This was the first of many.

 

I had been admitted to the hospital on December 16th and my arrhythmia medication had been stopped.  My procedure, a VF (ventricular fibrillation) ablation was to take place on December 18 and the doctor wanted to be sure that the meds were out of my system so that they could have a better chance of seeing the bad pathways in my heart that allowed my heart’s rhythm to go out of whack.  It’s very common for them to do this prior to the procedure and we were all shocked that my heart reacted the way it did so quickly.  Within the first hour, I experienced more than 20 shocks and the nursing staff on the cardiac ward quickly realized that I needed to be moved to CCU, I wasn’t their typical patient any longer and I could hear many of them talking about how traumatized they were after watching this happen to me.  Every time my heart rate went into the danger zone lights would flash and alarms would sound and everyone would come running.  I have a device that is meant to deal with my arrhythmia but there was the slightest of chance that they may need to intervene with a crash cart if the device was unable to get me back into sinus rhythm.  I heard the nurse call my husband, I could only imagine how worried and panicked he would be, the nurse told him she would escort him to CCU once he arrived.

 

Once all the arrangements were made, I was transferred to the Cardiac Care Unit, the nurse/patient ratio was smaller there and they are used to dealing with the things that were going on with me. The shocks kept coming in waves, I was no longer awake for any of them as I had been for quite a few from the first hour, each time my heart would beat so fast that there was no longer blood going from one ventricle to another, I would fade into unconsciousness, the device would shock me and I would awaken, this went on for most of the morning.  It got so bad at one point that they had to shut off all the lights in my room, close the curtains, there could be no noise and the nurse just stationed herself at my bedside, my heart was so aggravated that the slightest thing would set me off.  Prior to leaving the Cardiac ward, I had been catheterized and thankfully they had the foresight to do that, now I was being heavily sedated.  I was at the point of exhaustion and apparently both the nurse and my husband were pleading with the doctor to do something to stop the madness but the doctor was hesitant to put me back on my meds because they were trying to clear a spot in the Cath Lab for me that day to do the procedure and he didn’t want to stifle the arrhythmia to the point that they were unsuccessful.  When it became apparent that they would have to wait until the next day,they put me back on a low dose of my heart medication, at this point things slowed down but I continued to have frequent shocks.  My husband said he stopped counting at 70 that day.  I was grateful to be so heavily sedated.

 

I don’t remember much from there, I faded in and out, at one point, my husband was by my side holding my hand playing some soft ambient music to sooth me.  I am sure it helped him as much as it did me, he has seen me go through this so much over the course of the past 3 years that he suffers from PTSD the same as I do.  It’s hard for him.  I remember at one point, after a shock, I told him I was scared, I have never expressed that to him before despite all I had been through and he was terrified that I was going to give up.

 

I vaguely remember being moved to the Cath Lab for the procedure the next day and being told that they were going to leave my device on.  The last time I had this done, my device was disabled and replaced with external defibrillator pads and then they must have put me out.  I woke up crying, my chest was stinging, I had obviously been shocked but not by my device, I quickly realized that they were using external pads at this point and the electricity was connecting with the sweat between the pad and my skin, it was painful.  The doctor started talking to me, he was saying that we had been in the lab for 4 hours and he had burned 30 spots inside my heart, he said he was burning one at that moment and asked me if I could feel it, I certainly could.  He also said that every time he burned a spot, another would pop up, he was chasing something that couldn’t be caught.  It was decided that there was no point in keeping this up, I was worn right out, the procedure was deemed unsuccessful and I was moved back to CCU.

 

I continued to receive shocks the rest of that day, night and into Friday morning.  My device battery was dangerously low from administering so many treatments and the decision was made to give me a new device rather than simply change the battery.  When implanted, these devices are meant to reside for 10 years or more until they need a battery replacement, mine was dead in just under 3 years.  I was scheduled for replacement on Saturday December 20th.  I don’t remember much during the time between my visit to the Cath Lab on thursday and my trip back on Saturday for my device swap, but there is a picture of me smiling and waving for the camera just before they took me to have this done.  I am now the proud owner of a new St Jude Medical device, now with an atrial lead as well as one was put in with the new device.  I’ve been told it’s because there may need to be med changes in the future and they may need to pace the top of my heart, they would use the new lead to do that.

 

I would not be surprised to find that the final tally for shocks was in the 100 range and for something that gave us so much hope, it turned out to be a very horrendous experience, one that has left us both shell shocked and still trying hard to deal with.  In fact, it’s now 5 weeks today after the procedure and I finally felt I had that strength to sit in it and write about my experience.

 

Up until this point, I have been quite happy to be a science project and to go through all of this for the greater good of patients like me in the future, but I’m afraid that at this point in time, I don’t want to be an experiment.  I have participated in every study and have agreed to many experimental treatments in hopes that I pave the way for the next person experiencing this illness. Tomorrow I have an appointment with my Electrophysiologist, the doctor that sent me for this procedure and we hope to get some answers as to how things went so incredibly wrong and what to expect in the future, but I am sure, only time will tell.  I really hope there is some stability.

 

I have a hard time especially at night, I am so afraid that I am going to die so every morning that I open my eyes, I am grateful.  They say time heals all wounds but it’s going to take both of us a very long time to get over this.  It’s been a long road and we were so hopeful that this was going to be the answer to getting our lives back in some way.  We live one day at a time and I never in a million years expected that I had the strength to deal with something as life changing as this.

 

Please don’t take today or tomorrow for granted.

New Hope

Just when I thought there was nothing left for them to do for me, my amazing Electrophysiologist pulls a rabbit out of a hat and comes up with something.

 

One week to the day after being told I was a candidate for a heart transplant, but just not at this time, I had another shock.  I was devastated, I felt lost and in limbo, I was anxious, depressed and disappointed.  The device had been read when I went to the ER that day, we knew it was a legitimate shock so I tried to carry on all the time thinking that I was only reminding the people in charge of my care that I was something that they couldn’t fix.  I felt like they all just wanted me to go away, mostly because of the way the ER doctor made me feel that day.  The experience was dismal and it was the day I came to the realization that this was going to be my life and that I had better accept it and move on, something that I have not been willing to do, to this point, I was fighting for something that resembled my old life, maybe that wasn’t possible.  The ER doctor told me that I shouldn’t bother coming in after a shock, that there was nothing more that they could do for me, he said I should wait to see if things got worse or I should come the next day…he saw no point in me calling an ambulance and making the trip to the hospital, we all knew my shocks were legitimate and not caused by the device, both Douglas and I were taken aback. His bedside manner left something to be desired.

 

Almost two weeks after the shock, I made an appointment to see my regular cardiac doctor, I hadn’t seen him since the decision about my transplant so it was time for a strategy session.  When I walked into his office, he asked me if my ears had been ringing and mentioned that he had been speaking with one of his colleagues about my case.  There was a procedure that could be done if I was willing to have it, a procedure I had two years ago that now had updated technology that could work this time.  The procedure is called an ablation, it’s a rather routine procedure they do on people with arrhythmia, they go into the heart using a probe and they are able to burn the areas of the heart that are causing the arrhythmia. During that procedure, two years earlier, I was shocked 25 times, I had first degree burns on my front and back from the defibrillator pads used in place of my device, which had been turned off so they could better control the situation.  I remember coming back to consciousness after the 5th shock crying and totally traumatized, they put me under and I awoke many hours later back in my room.  They were cautiously optimistic that they were able to burn the appropriate spots but the doctor told Douglas that every time they moved the probe to find the problem areas, my heart would go into v-fib so it was difficult to tell. I had several shocks in the coming days, the procedure was not successful.  It’s very hard day to forget.

 

That brings us to now.

 

There is a doctor in Victoria who has been consulted on my case.  He is highly trained in Boston in the area of arrhythmia and ablation and there is a new probe being used these days.  I’m told that the new probe has 5 prongs and is much better at mapping the heart and he thinks that they have a 40% chance of successfully finding the problem areas with the updated procedure.  I am scheduled to be admitted to the hospital soon.  The idea that I have a 40% chance of never having to go through another procedure, another shock or a heart transplant is what helped me make the very difficult decision to go through with this procedure despite how traumatic it was the last time we attempted to do this.  Am I anxious?  Yes.  Am I terrified?  Definitely! there are many things that can go wrong but I choose to focus on all the things that can go right.  I remind myself time and time again that I will be in the best of hands and that helps a little.  I can’t let my fear stop me from doing this, something that has a 40% chance of giving me my life back.  I also know that this is the very last thing, there is nothing else except a transplant so I hope it works, I’m not ready to give up on this heart of mine yet.

So disappointed

It’s been a few weeks since my last post.   I didn’t intend for it to be this long, but I have been trying hard to get my head wrapped around what has been happening.

 

When I left you last, I was waiting for a decision on a heart transplant, that decision came in fact at the end of October and it was a huge disappointment.  The answer was yes, I am a heart transplant candidate, however, they would not list me at this time.  The reasons they gave me made sense in some way, but were very disappointing given how much of my life has been turned upside down by all of this over the past soon to be almost 3 years.  What made it an even bigger disappointment is that I had really, truly thought that the decision would come down in my favour, I actually let myself believe that I would be able to reclaim my life.  There is nowhere else to turn and my only option is to wait for the next shock and wait for a decision to be made as to how many more I need to endure before I am able to get a new heart.  The decision makers think that I am too healthy, that I should stabilize, that the shocks should stop, that I am on the right medication, that given all the risks involved in heart transplant that they are actually doing what is in my best interest.  I was devastated.  I cried for days, I moped around for a few more, I dove back into my severe depression, trying to make sense of it all and to figure out what I should do next.  I had such hope.

 

I feel so lost.

Paul Zoll, MD: Originator of Modern Electrocardiac Therapy – A Biography by Stafford Cohen, MD, BIDMC

Nice to get a little history lesson, I wouldn’t be here today without this pioneer in Cardiac medicine.

Leaders in Pharmaceutical Business Intelligence (LPBI) Group

Paul Zoll, MD: Originator of Modern Electrocardiac Therapy – A Biography by Stafford Cohen, MD, BIDMC

Reporter: Aviva Lev-Ari, PhD, RN

SOURCE

http://www.bidmc.org/Centers-and-Departments/Departments/Cardiovascular-Institute/CVI-Newsletter/StaffordCohen.aspx#sthash.lAe3b9Kk.dpuf

Paul Zoll: The Doctor Who Defied Sudden Cardiac Death

An Interview with Stafford Cohen, MD

 

Stafford Cohen, MD, a Beth Israel Deaconess Medical Center cardiologist who retired in 2009, retains the intellectual curiosity and the human touch that Stafford Cohen, MD, with his book about Dr. Paul Zollcharacterized his 48-year career in cardiology at Beth Israel Deaconess Medical Center. Over the years, Cohen had been intrigued by — and for a time shared an office with — Paul Zoll, MD, a brilliant yet controversial fellow cardiologist whose scientific work included numerous revolutionary breakthroughs that helped prevent sudden cardiac death.

Cohen, Honorary Senior Physician at the CardioVascular Institute, recently published a no-holds-barred biography, Paul Zoll, MD: The Pioneer Whose Discoveries Prevent Sudden DeathHeartmail recently spoke with Cohen about…

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So, Wednesday it is then.

I got the call, that call I have been anxiously awaiting for the past couple of weeks.  The call about the appointment where they let me know if they will put me on the heart transplant list or if they will continue to monitor the situation I have been in for the last two and a half years, you know, the one where my heart stops out of the blue.

 

if you have been following along, you know that it has harshly affected my quality of life.  I can’t work, I can’t drive, I can’t leave the area, all I can do is wait and wonder when my device, meant to keep me from dying will have to jump into action to save me again.  It really has been hard to reconcile, all that has been going on, even though you would think by now I would be used to it.  I’m not.  Everywhere I go, everything I do, I have this niggling thought in the back of my mind, always wondering if this is the day my heart will go crazy and my device will give me another shock.  It was this very thing that has caused me to consider a heart transplant, in the end, even though I have been told by many doctors that I am replacing one disease with another, I feel that getting this transplant will be more predictable and will give me back my life.  I don’t want to be afraid of being alone, or of  going to sleep, or of being at the gym or meeting up my friends for dinner and it keeps me from doing so much.  I never thought in a million years that I would have to consider a heart transplant, me the organ donor, figuring the about the only thing I would have to give to someone was my heart.  WRONG!  DAMN THIS ARRHYTHMIA!!!

 

They left a message and when I saw who had called, I sort of knew what it was for, I’ve been jumping through hoops for the past weeks, being poked and prodded to determine my current state of health.  The fact that they decided to go through with the assessment was encouraging, but now it all comes down to a “committee” of people who will decide my fate, people my husband and I have been meeting with regularly.  There will be a cardiologist,  a psychologist, a heart surgeon, a social worker, and even an ethics person, they will talk about my case and debate whether or not this is the right time for this transplant to happen based on all of the information the have been gathering. I’m sure it will be a difficult decision based on the fact that I am outside the box when it comes to this sort of procedure. Every person being considered for transplant goes through this and I totally understand why this needs to be done, getting a new heart is a VERY precious gift, they want to make sure that the person receiving it has the best chance of long term survival.

 

Knowing it will only be a few more days has left me an emotional wreck, I’m happy, sad, anxious, terrified, relieved, impatient and excited all rolled into one.  I am trying hard not to have any expectations about what the answer will be and not to get too far ahead of myself, it’s hard considering all I have been through.  I can’t even begin at this point to think about the actual surgery and recovery afterwards, it’s just too overwhelming and until I know, it’s something I needn’t worry about,  I will try to remain calm until my appointment next week.

 

So, Wednesday it is then.  Wish me luck!