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.

 

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.

 

 

 

 

 

 

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, 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!

The waiting is the hardest part….

My first appointment with the Pre-Heart Transplant Clinic was August 11, 2014, and at that time, the decision was made to go ahead with an assessment of my health to see if this was the appropriate time to do a transplant.  With the flurry of tests and such, the time frame was 4-6 weeks, it’s now been almost 8 but it looks like the decision may be coming soon.   I have one more appointment on October 8 that will investigate further something that was found in the test results, no one really anticipates that it is anything to worry about, they just want to be sure that all is well before proceeding.  It definitely makes me feel better to know that they are doing their due diligence when it comes to potential pot holes but waiting is hard yo.

 

It’s funny cause I say waiting is hard but it’s not like it’s something new for me.  For the last two and a half years I have been waiting for many things.  I have been waiting for another shock, I have been waiting for a diagnosis, I have been waiting for some new treatment that would make this all stop, so I’m not sure why waiting for this decision is harder than any of the other waiting I have been doing. I guess because it will have such a huge impact on my life either way.

 

I have a lot of anxiety around will they say yes, will they say no let’s wait.  Then I start thinking about having the surgery,  not having the surgery.  Then next it’s about my device, I’ve grown so used to it being there, will I be able to cope without it?  Will a new heart really give me the freedom back that I have lost?  Will it be more predictable?  Questions I don’t have the answers to that only a crystal ball could begin to shed light on.  It’s hard being anxious and afraid all the time, it really takes a lot of energy to constantly fight back at thoughts that have legitimate reasons for being there, big scary thoughts that are hard to argue with.  I actually had to start seeing someone to help me manage my anxiety, to help me be more aware of the bad thoughts I have that can tailspin me into a deep depression, to catch them before I get too far down and to deal with them. It’s hard being vigilant against your thoughts and it’s exhausting.  Lately I have had an increase in nightmares, they are almost a constant thing, dark, bloody, violent dreams that wake me up shaking, my heart racing and scared out of my wits.  Often, my husband will tell me that I was thrashing about in the night as if I was fighting some sort of battle while sleeping, I often wake up dog tired, all of this weighs on my mind so heavily.

 

Through all of this I have found that meditation,  relaxation and walks in nature have helped me cope quite a bit and as corny as it may sound, I try to take it one day at a time and not get too far ahead of myself.  I  can absolutely drive myself crazy if I let these thoughts and fears run my life because no matter what the decision is, I go back to waiting for the call that they have a donor. or waiting for the day my device has to save my life again.  Thankfully I have the loving support of a partner that listens to me, hugs me and assures me he is there for me.  Also I know that I just  have to trust that decisions are made in my best interest,  that everything happens for a reason and that everything will work out as it should.

 

And to live by my new motto…

It does not matter how many times you get knocked down, but how many times you get up. -Vince Lombardi

 

 

 

 

 

Happy to be here

hello everyone…

I have been dealing with a life threatening health issue for the past year and a bit, it’s been so much to process and I finally came to the conclusion that I would like to use this forum to talk about what happened to me and to raise awareness about Sudden Cardiac Arrest.

More and more these days we see headlines in the news about people, especially young people having Sudden Cardiac Arrests…some are lucky to have quick intervention to save their lives, others not so much. You now see a flurry of activity in Community Centres and other public places across Canada to install AED (Automated External Defibrillators) in order to help save lives. You also see ads bringing awareness to this issue on public transit and other places telling you how to recognize the symptoms of a Sudden Cardiac Arrest and what to do to help, we’ve come a long way baby!

In my case, I have no underlying health issues that would have caused what happened to me so the specialists in charge of my care are on the search to figure it out. Because it is rare and problematic to this date, my case was presented to a group of Cardiologists with a specialty in arrhythmia at a conference held here in Vancouver about 6 months ago and although I am happy it had the attention of many of the best doctors in that field from across the country, I still wish it weren’t happening to me. I am a curious person by nature so thankfully I have found this all to be very interesting, I know more about hearts, heart disease, procedures, hospitalizations than I ever cared to, in fact, during a procedure just the other day I was asked if I was a nurse because I was able to talk so intelligently about my history, I just laughed and said no, unfortunately I have learned it from my experience. Every procedure that has been done, every medical term that is used I research, I know all the jargon and medical phrases, I just have this thirst to know what is going on, I want to be educated, I want to be involved in my care and make informed decisions about any aspect. Sadly I have seen first hand how many people out there these days are ignorant to their health issues, they have no idea what is going on with their bodies, I absolutely could not be that way.

I am happily married woman living in Vancouver, BC. I’m certainly not old enough to have the heart problems I have been coping with but I’m no spring chicken either. I am lucky enough to have a very dedicated husband who has been caring for me, he keeps me grounded and never lets any pity party I conjure up for myself go on for too long. This has turned our world upside down to say the least. Prior to my Cardiac Arrest I had a very high stress job, made decent money and whenever possible you would find us on a “road trip” at every opportunity. We love the desert, volcanoes, hot springs and have traveled quite extensively throughout Western Canada, US and Mexico leaving us with many, many fond memories and the urge to revisit the places we love so much. We both really miss that part of our life right now and we hope one day soon we can get back to having the wind in our hair on the open road. In our minds, flying is for sissy girls, we prefer to see things on the ground, they are much more interesting.

I am very grateful too that I also have a supportive family and a network of great friends who have been there for me every step of the way, we have certainly needed to lean on them more than once. I am not sure what I would do without any of these people in my life, the outpouring of support this past year has been overwhelming, without all the prayers, love and good vibes, I’m not sure I would have survived.

Something like this really helped put things into perspective and I have learned what is really most important in my life, I will share my thoughts and experiences here. My hope that is I can help others along the way.

Stay tuned and thank you for reading.