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

 

 

 

 

 

Looking for the magic bullet

I feel a bit down today.

 

The past two weeks have been stacked full of appointments, tests and procedures as part of my Heart Transplant Assessment, I have had something booked almost every day and I’m tired.  I still have a few more tests for next week so almost done and a meeting with the Heart Transplant Clinic again,  next up will be a number of vaccinations that quite frankly scare the shit out of me.  My heart can be so easily aggravated and I worry that introducing the vaccines into my body on a rapid basis will set me up for shocks…but I can’t go on the list until they are completed.  It’s a catch 22.

 

The scariest of the procedures was a Right Heart Catheterization where they put a scope into the right side of my heart through the jugular vein in my neck to determine how well the heart was pumping and to measure the pressure in the heart and lungs.  I was awake for the procedure so when my heart rhythm started to go wild, I could feel panic set in.  Prior to starting the procedure, the surgeon put a large magnet over my device so that it wouldn’t unnecessarily shock me and to help them control the situation to some degree.  It’s such an unsettling feeling to have your heart beat so erratically, I heard the Doctor tell the person operating the scope to watch my rhythm after he heard me say “Oh my Gawd”, they slowed down and my heart seemed to settle down.  The procedure took all of about 20 minutes and when it was through, I told the technician that it was one of the coolest but yet horrifying things I could remember having to go through.  Within an hour I was sent home with a long list of instructions in case the wound started to bleed again.

 

I also met with a surgeon, his job was to look at my case to see if I would be a good candidate for surgery.  One of the big discussions has been my weight, I am and always have been a big girl, very muscular but reasonably fit, despite that, he thought I would be.  It gave me some relief for him to say that but they have also expressed concern that it will take longer to find me a suitable donor heart.  One thing he mentioned during our meeting was that there was a 2% chance that whatever is causing my arrhythmia now could reoccur in the new heart.  I was stunned! I thought I was looking at the magic bullet that would make this all ok so I could get on with  my life and I realized then and there that there probably isn’t one and it was about as good as it was going to get.   He also asked me to think about how many shocks a year would be acceptable to me, he said that it may be a reality that I would be stable for awhile then experience a little “storm” like the one I just had with three shocks in two months.  Thinking about this lately, I realized that in the 26 months that I have had my ICD, I have had 31 of those shocks, that’s a little more than one a month…that is unacceptable.  The shocks are so random, with no warning how am I expected to put them into the back of my mind and carry on and live a normal life?  It’s more confusing now than ever, just when I thought having a new heart would lend some predictability to my situation, a little tidbit of information changes the entire game.

 

I guess that thankfully for me, I have an awesome team of doctors working to try to decide what is in my best interest and they have a whole community of international doctors they can go to for ideas in my very difficult case.  There are a couple of other ideas floating around, things they would like to try before giving me someone else’s heart and I am quite willing to try them, but in the end, it means more time in limbo and more time away from my productive life and I don’t like it one bit.  It makes me sad.

 

Testing 1, 2, 3…

Last Wednesday I spent most of the day at the Pre-Heart Transplant Clinic talking to doctors, dieticians, nurses and social workers about the possibility of a heart transplant.  If you haven’t been following along, I have something called Idiopathic V-fib a rare arrhythmia that has puzzled the medical profession.  I have been to all kinds of specialists, my case has been shared with Electrophysiologists from around the world and no one has been able to come up with a treatment to stop my heart from going out of rhythm.  I have tried all the drugs that I can try, all procedures have been done that can be done yet they can’t seem to give me my life back. The events are so random in when they occur and why they occur that we rarely leave the safety of Vancouver, we feel safer staying close to the hospitals and doctors that intimately know my condition.  Thankfully, the events most often happen at home, but we just recently had my first “Public” event while on BC Ferries coming home from a visit with my in-laws, 20 minutes out from Vancouver.  It was scary as they always are.  I do have a device called an ICD implanted in my chest that jolts me with 35 joules when necessary, but I am most always unconscious when this happens.  The last two and a half years have been a roller coaster, with many ups and downs in regard to my condition.  I did have a brief period of time when I was stable, but that came to a crashing halt after 14 months and was followed by three events within a 2 month period.  This is why I am being considered for a transplant, I am told that they look at maybe one case per year where the issues are similar to mine.

 

They say that having a transplant is like trading one disease for another, but in my case, at least the transplant will have more predictability and from my perspective, it will give me back some semblance of my former life.  Currently, I can’t drive, work, travel or plan anything long term and I still have lots of living to do, lots of places I want to see and people I want to meet.  This terrible turn in my health has devastated us financially, before all this, we had well paying productive jobs, now we are both living on what little I get as far as long term disability from my former employer.  I can’t be left alone so Douglas has had to leave the workforce in order to be with me.  We live each day wondering if the rug will be pulled out from underneath of us because of a decision made by someone at the insurance company, it would be devastating and we would be homeless, not something you want to face when you are fighting for your life. Some days the stress is unbearable, we do the best we can to cope.

 

During this meeting on Wednesday, it was decided that we would go forward with the transplant assessment, they take a microscopic look at my health at this moment to make sure there are no surprises.  They look at all aspects and no stone is left unturned, they want to be sure I am free from cancer and infection and that I am going into this surgery with the best chance of long term survival.  Before I will even be considered for transplant I have to have a number of vaccinations, a dental check up, a pap test, a mammogram, samples are taken of my urine and stool, I will have doppler scans on my neck and legs to be sure there are no blockages, an ultrasound on my abdomen, a lung function test, a CT Scan of my body to look at my internal organs, a chest x-ray,  a bone density test and a right heart catheterization which looks at the blood pressure in the lungs.  I also have to meet with a Social Worker, a Psychologist, a Dietician and the Surgeon, the evaluation is all encompassing.  After all of this information has been gathered, my case goes before a team of doctors who decide if I am a suitable candidate for transplant and if this is the right time to do the surgery.  The whole process takes 4 to 6 weeks, if the answer is yes, then I am given a pager and the wait begins, it could take anywhere from a day to over a year to find a suitable donor, the average wait time is 6 months.  If the answer is no,  I will continue to be monitored for any changes to my condition and the possibility exists that somewhere down the road I will be considered again.  For me, a no would be devastating, we have already put our lives on hold for over two years waiting for a day when we could resume our exploration of the world.  I want to be able to go to Ontario to visit my family, it’s been over 10 years since I have seen many of my relatives and there are so may new little ones I have never met.  My parents are getting older and my Dad is not doing well, and I really need to see old friends who support me from afar.  I want to go to Portland for a weekend, a city I love dearly, there are so many places that I want to return to, places that have touched my soul and make me feel a part of this earth.  There are so many places left to explore with the person that I love the most.

 

I really hope they say yes, I really, really miss my life and all it used to be.

There is a difference between a Cardiac Arrest and a Heart Attack

Before I had a Sudden Cardiac Arrest I had no idea that it was or what it meant.  I found out the hard way and feel this need to educate people about it.  So many times the media interchanges these two terms when it comes to articles they write about people and heart events.  I also find family and friends at large don’t know the difference either.

 

For the difference between a cardiac arrest and heart attack, click here.  In my case, my heart is healthy with no abnormalities, no blocked arteries or structural defects.

 

Sometimes a Sudden Cardiac Arrest happens because of an Inherited Arrhythmia, to read about it, click here.  In my case, there is no known cause, there is a slim possibility it is inherited, but DNA testing would need to be done. I have no family history.

 

I have learned more about the heart in the last two years than I ever thought I would, at times when speaking about my heart health I have been asked if I am a nurse.  I have always been one to research and educate myself about things, especially when it comes to my health, I am in no way an expert but it helps me to know and to be able to speak intelligently about it.  My ignorance was such that I had no idea that anyone under the age of 75 could have a device that zapped them back to the land of the living only to find out that there are babies currently living with these devices because they have inherited an arrhythmia.  I tell you, whenever I feel sorry for myself for having to deal with this at my age, I think of the young ones out there who have just started their lives and how it will impact them.

 

My arrhythmia has been diagnosed as Idiopathic, so it has been difficult to treat.  Many of the drugs used to treat my condition haven’t worked in my case, to learn more about those drugs, click here.

 

I don’t have many options left and will be seeing a Heart Transplant doctor in near future to see if I am a candidate.  I have a long list of questions to ask.