Welcome to my Blog!

I discovered I have a congenital heart condition at the beginning of 2010. This blog is so that I can share my journey through all the tests, and ultimately open heart surgery. Because I am a Registered Nurse, I feel I can give a unique perspective, from both a professional and personal point of view.

Read the blogs from the oldest to the newest (July 10 ones first)

Saturday, July 31, 2010

This doctor is going to fix my heart!

Open heart surgery isn't performed in the public hospital where I live so I was referred to the major cardiac hospital in my state, which is about 1 1/4 hours drive away. I had about a 5 week wait for the appointment, enough time to recover from the hectic pace of the previous few months, where I had been in and out of hospital numerous times.

On 7 July I met the surgeon who will fix my heart! I felt immediately at ease with him, especially when he emphasized that it is unacceptable for him that I should have any complications whatsoever. I said that that suits my philosophy as well, because as I am the single mother of two teenaged boys, I don't want anything bad happening to me either! He gave me his mobile phone number and said that I could let him know when I am ready for this surgery, because obviously I will need someone to look after me in the immediate post-operative period. I gave him a date in mid-August which is when a lot of my family will be here for my son's 18th birthday and he agreed to that.

How often does that happen? This doctor is caring and compassionate and cares for my welfare, not just for a body part that he has to fix! I have had no control over any of the dates of procedures or surgery up till now, and that has made me feel like my life is out of control for the last few months. At last I can organise things to suit me and my family.

Although I already knew the basics of what the surgery would entail, it was good to have him discuss it with me on a level that I could understand - he treated me very professionally. I took a copy of all my test results with me, and a typed history of all the dates of procedures etc., which he read thoroughly. This was important to me - he didn't dismiss me like a lot of other doctors do, he took me seriously and answered all my concerns. Most female patients are worried about the scar - he said he'd try and keep it as low on my chest as possible so I could still wear clothes that are low cut - I said that I don't wear low cut tops - "make the incision as large as you need to have enough visibility so that you can repair my heart with ease!"

Open heart surgery requires the heart to go on bypass - the blood is directed away from the body to a heart bypass machine which takes over the pumping action of the heart, and filters and oxygenates the blood before returning it to the body. This allows the surgeon to operate on the heart in a bloodless field. Once the heart is stopped, he will open it up to repair the septum between the atriums ( the wall between the two upper chambers of the heart) by either sewing over the defect or placing a graft over the hole. My lungs will also be deflated during the surgery.

I'll spend about 24 hours in ICU and during this time most of the tubes will be removed. I was most concerned about the pain because I know how sore my chest was after having CPR - I'll have a fentanyl or morphine PCA with a background infusion (a machine will give me narcotics straight into my bloodstream. When I'm awake enough I'll be able to control it with the push of a button). I'll be in hospital about 5 - 7 days.

The main complication to the surgery is air embolism which could cause a cerebrovascular accident or death. He has to make sure there are no bubbles of air in my heart to avoid this. He said I probably have one hole in the heart - not two, and it's been difficult for the doctors to visualize it due to it having an unusual shape, and the septum being floppy.

I've always wondered how this could have been missed for so long, especially when I have had symptoms most of my life. Apparently it worsens over time - if I don't get it repaired now, eventually the flow of blood from the left side to the right will reverse, and I will become cyanotic (blue). The pressure within my heart will cause damage to the valves and eventually I will get so sick (in 10 years' time) that it will be inoperable. So even though it's not critical that I get it fixed now, if I leave it too much longer I will be really unwell and may be too sick to undergo the surgery. Right now I'm still fit, young and healthy enough to do it so it should be done now to prevent complications.

I feel like I'm in good hands - the doctor and the other staff know their jobs so well. It's like a well-oiled machine, so organised. I have a lot of confidence in the hospital and doctor after this visit. I left there feeling positive and enthusiastic for the first time in months.

Friday, July 30, 2010

Percutaneous closure

The multitude of tests I had had so far indicated that the holes in my heart were tiny. There was flow of blood from the left to the right through the defect. It was fascinating to watch on the screen during my angiogram - I could see the jets of blood cross from one side to the other, and then out when the heart contracted, the flow of blood in bold colours of red & blue. My main concern at this time was that the holes would be too small to fix because the Professor had attempted to pass a probe through the defect but had been unsuccessful. I assumed this was because the holes were too small.

I had a great deal of anxiety leading up to the next hospital admission - because of needing resuscitation after my last procedure, and because I was worried that they would not be able to close the holes with grafts. This is called percutaneous closure and it involves a similar procedure to the angiogram, but they use the femoral vein (large vein in the groin) to access the venous system and pass the sheath up to the heart. The graft is then fed up through the sheath and it opens up inside the defect, effectively blocking the hole.

On 2/6/10 I was admitted to hospital for an overnight stay. I was becoming very familiar with the staff of the cardiac catheter lab. by this time. I was in good spirits - this was the day my heart would be fixed! I was looking forward to getting my life back to normal.

I made a point of telling the medical staff that I wanted to be sedated because I was anxious - I would have a TOE (transoesophageal echo) probe down my throat during the procedure which I knew would be uncomfortable. To my dismay, the doctors were so intent on what was happening on the screen that they forgot about me! I was awake during the whole procedure - for 2 hours I heard everything, felt everything and could see everything.

The professor tried again and again to get the graft to sit right in the defect. Meanwhile, the TOE was causing my gag reflex to induce vomiting and choking. The nurse suctioned me - I am sure he knew I was awake, how could he not: I had tears streaming down my face and I was gagging and choking. I couldn't help myself afterwards: I made comment that he should have been more aware of his patient and asked the doctor to sedate me more. I'm no dummy: I know that there is a nurse assigned to the patient, to observe and look after them, while other nurses are scrubbed to assist, and scouts do the running for equipment etc. The nurse assigned to me was definitely lacking.

When they completed the procedure one of the doctors told me it had been unsuccessful and that the professor would talk to me in recovery. I just started crying uncontrollably and didn't stop for 2 hours. I got a massive migraine - always seem to when they muck around with my heart.
The Nurse Unit Manager, Helen, was someone I knew because she used to work at the hospital where I work. She had been involved in my care throughout all my admissions and she was one of the nurses who resuscitated me during my last procedure. She came and stayed with me for at least two hours this time, as I bawled my eyes out.

The professor came to talk to me and explain what had happened. The holes weren't too small - they were too big (more than 3.6cm)! He had tried two different size grafts and they kept slipping through and didn't sit right so they had to remove them. Because the septum or wall between the sides of my heart is so floppy, they hadn't been able to visualize the hole properly. "So what does that mean?" I asked, "Open heart surgery" was his reply.

It's my worst nightmare come true. Right from the start I had said I didn't want open heart surgery. This heart problem had gone from being a tiny PFO which I could have closed percutaneously, using minimally invasive surgery, in an elective procedure which would help my migraines, to being a major operation which could be life threatening and would have major impact on myself, my family and every aspect of my life.

It's just a complete shock to the system. I didn't know how I'd cope. I'd run out of sick leave and used up most of my holiday leave so I'd need six weeks off work, unpaid. How would my kids cope with all of this - How terrible to put them through such an ordeal. Helen organized for the Cardiac Rehabilitation Nurse to see me and she went through a lot of the education with me. The good thing about being a nurse is that we know a lot about medical stuff naturally, but the bad thing is, there's no naivety about going through a medical problem ourselves. We've seen it all and we know what open heart surgery involves. And the weird thing is, nurses seem to suffer from the strangest complications (good example is my needing CPR after an angiogram, and being awake during a procedure that most people are sedated for and don't remember!)

I was discharged home - my boys were just happy to see me, they did not seem to realise that I was home because the procedure had been unsuccessful. I had to sit down with them individually the next day and spell out what that meant. It's probably a good thing that we've learnt more and more about my heart condition over a period of months. If I'd gone from knowing nothing one day to finding out that I need open heart surgery the next, I think the shock would have severely knocked us around.

The next day was spent on the phone, ringing my father and siblings to tell them the news. I felt like when I had had to ring them to tell them I'd separated from my ex-husband: I could hear the shock and devastation in their voices. I hate doing that to people because I know they worry about me. I don't want to be a burden to anyone, especially my family. The thing is, if I don't have this operation, I could potentially be a much bigger burden on them: the risks if I don't undergo the surgery include TIA's (transient ischaemic attacks), CVA (cerebrovascular accident), pulmonary hypertension, and worsening heart disease over time. I think having a CVA would be one of the worse things to go through, and I don't want to ever be incapacitated like that.

I don't have a choice: I have to get well for my sons. Part of being a parent is keeping yourself healthy so that you are there for them when they need you. Mum died when I was in my mid 20's, newly married, and I have felt that loss my whole life. I have to get through this for my sons.

Thursday, July 29, 2010

I could have died!

Extract from my diary 13/5/10: "Wow, if only the kids knew how close I was to dying yesterday - I totally down-played it so that they don't freak out. Funny thing is, I don't feel like it was my time - I didn't see the bright light or go through a tunnel or anything although I did dream, but don't know what. Maybe I'm in shock and it hasn't hit me the reality of it but I don't think I was in any danger at that point. I just feel that I'm meant to be here for a long time more. My soul could have chosen that moment to go back to heaven but it didn't. If I'd been at home or even in the carpark or lift it would have been a different story but I wasn't.

I went up for my right heart studies at 7.30a.m. and thought I'd be there half a day. I told them I couldn't be picked up till 3pm so they bumped me to the end of the list then a couple of ambulances came in so I got delayed even more so it wasn't till 1p.m. that I got on the table. Then the Professor decided to do an angiogram as well so the procedure took an hour and they had to give me heparin (blood thinner) so the sheaths had to stay in for an hour or so (they put one in my femoral artery and one in the femoral vein - they are threaded up to the heart to enable the doctors to visualise the internal structures of the heart). The procedure wasn't pleasant - I was wide awake and could feel the wires going into my heart and my cardiac rhythm kept changing.

I had to lie flat for another 3 hours so all up 6 hours flat and only had one sandwich and 2 cups of apple juice all day. Also I got a migraine post-procedure so had a dose of IMI pethidine (narcotic) and maxalon for that. At 5p.m. they started sitting me up ready to discharge me when I felt a sharp stab in my groin and told the nurse - he applied pressure to the site which was bleeding. I said "I feel faint ... really faint" ... next thing I'm waking up and the nurses are putting the defib pads on my chest and an oxygen mask on my face and they're saying "she's back!". end of extract

Apparently I had a vasovagal episode (severe faint) and my heart went into complete heart block (stopped beating) for 2 minutes. I needed chest compressions and atropine to bring my heart rhythm back, it slowly returned and my heart rate was 38 after 2 minutes. It's routine procedure these days to do chest compressions even if there is some cardiac output to support the heart and keep the blood circulating to the vital organs. Even so, if I hadn't still been in the cardiac cathetar lab. recovery I probably wouldn't have had such a good outcome. I spent the night in CCU, monitored, and my heart rate remained steady but slow overnight. All my blood tests and ECG were normal the next morning so I was allowed to go home.

The Chest Xray showed I didn't have a broken rib from the CPR, but my chest felt like an elephant had sat on it for the next week or so. Even with pain killers I ended up on antibiotics for my chest because I have asthma, and breathing deeply was so painful.

Psychologically, for the next week I was euphoric - coming that close to death, but being spared, put me on a "high". At the same time I was convinced I was going to die. There were no "what if's" - just an absolute conviction that I would die during my next hospital admission, or that I would have a heart attack on the street. That feeling didn't go for a few weeks and it was quite weird. After the euphoria came the depression - just as I had to return to work. My first shift back I was walking up the hallway towards the nurses' station and I had to stop, I was pale and shakey and felt like I was going to pass out. I wasn't "myself" for a few weeks, in fact probably 4 or 5 weeks afterwards.

I felt at the time that I wasn't ready to die - I hadn't prepared my boys for it in any way. I wrote letters to them and my friends to be opened in the event of my death. Everything faded away in importance, apart from my sons and my family and friends. All those things that worried me or seemed so important before did not matter at all. I actually get really pissed off with myself that I had previously spent so much time worrying about external things when they don't matter if your heart isn't working properly. Last year I got braces on my teeth because I always hated the sight of my crooked teeth. That decision has meant that I am tied up into a contract until the middle of next year - two years altogether. All the time and money I spent on "looking good" over the years I now feel is a waste and I would give it all away to have my health back again.

I chose not to tell my boys that I had nearly died - I told them I had fainted in hospital so they kept me overnight. However, they overheard me telling a friend on the phone and they were so angry with me that I hadn't told them the truth. I have been completely upfront with them since then because they told me they want to know everything. I still wouldn't have told them if I had the choice - I feel that at 15 and 17 they're too young to be burdened by the worry of their mother having a heart condition which could have killed her. By trusting them with this information, they are less angry about it and they can come to me and ask me questions like "what will happen to me if you die?". It is a real fear for them because I'm a single mother. I've definitely noticed them becoming more mature this year - it makes me really proud, but sad as well that they have to go through this.

Saturday, July 24, 2010

What does a hole in the heart have to do with Migraines?

When the cardiologist first told me I have a congenital heart condition I was terrified. I've never been so scared in all my life. My blood pressure went sky high for the first time in my life. There was a glimmer of hope in amongst the shock of it though, when he said he could fix my migraines by repairing the hole. It's still controversial, but studies have shown a link between a PFO and migraines, and mine are so debilitating that I thought it was worth going through the procedure so that I wouldn't have to endure daily headaches and frequent migraines.

It involves having a sheath inserted in the femoral vein and passed through the venous system to the heart. A device is then threaded up through the sheath into the hole where it is opened up and it plugs the hole up. Because it is minimally invasive and didn't involve opening up my chest, I was willing to go through it just to get some relief from my migraines and so I told him to book me in!

I had to have a TOE (transoesophageal echo) first, which involves a light sedative so that the doctor can put a probe into your throat in order to get a clearer look at the heart. I booked into the hospital I work at, and it was at this time when I discovered my insurance didn't cover cardiac surgery. The TOE showed up a more extensive heart problem than the first tests, however, so my cardiologist said that I needed to have it repaired soon, at the public hospital.

It showed that I have two small holes, a PFO and an ASD (atrial septum defect) and the atrial wall is floppy - also called an atrial septum aneurysm. This is why I get palpitations, and can be pretty dangerous if left untreated.

I got pretty upset at this news because I'm only in my early 40's and I've looked after my health all of my life. Dad was from 11 kids and his mother and 4 siblings died suddenly of cardiac events, plus he and at least two other siblings have heart disease. I didn't want to be just another statistic. My dad has decided to put his head in the sand regarding his own cardiac condition - he had a heart attack post-operatively last year and was meant to have investigations but declined. He'd rather leave it in God's hands - and that was his advice to me. I can't just leave it in God's hands though - I have two teenage boys who need me! I'd rather let God's hands guide the medical officers, with all their knowledge, to give me the best treatment in order to live a long, healthy life.

So the next step was to wait for the public hospital to get in touch with me so that I could have treatment there. It wasn't too long a wait - 5 weeks, but then they had to repeat the tests I'd already had, and they wanted more extensive testing before repairing the holes in my heart. So for the next couple of months I was in and out of hospital.

I slowed my life down considerably as soon as I found out I have a heart condition. I was a real gym junkie, going to the gym at least 3 times a week, plus swimming, running, cycling and personal training sessions. There were times when I was nearly passing out during sessions, from palpitations, dizziness and shortness of breath, but for some reason I never connected the dots and realised it was my heart that was the problem. I'd had the palpitations investigated when I was pregnant 16 years ago, and I was told it was just SVT - a non-life-threatening arrhythmia, so I had never worried about the palpitations.

In 2009 I was training really hard and I was addicted to the endorphins - I got agitated whenever I missed a training session. I found it hard to stop exercising even when I had badly sprained my knee or broken a rib while training. I was training really hard for a triathlon in November when I got really fatigued just before it. I just assumed I had overtrained but I didn't slow down. The fatigue never really went away and I think this was when my heart condition really decided to make itself known. There were a few times last year when I really should have called an ambulance because the symptoms were so bad but I admit, I was in a huge case of denial. I could have exercised to death! I guess it just wasn't my time to go.

I stopped all forms of exercise at the beginning of this year, and now I just walk the dog every day. Slowing my life down in this way has caused me to become a much calmer and peaceful person - taking time to smell the roses so to speak. I don't think I'll ever be that gym junkie again, but I do miss the fun of exercise, and the social aspect. I actually lost 3kg in weight, which I assume is muscle bulk, but I haven't turned to flab yet!

Next post: The day I nearly died

Friday, July 23, 2010

From Healthy & Fit to This

A year ago I ran the best race I ever ran in my life. I was the fittest I've ever been. Fast forward to today, and I'm on the waiting list for open heart surgery. How did this happen?

I always knew that there was a huge family history of heart disease on my father's side of the family. Being a nurse, I knew the ways to prevent heart disease and followed them: low fat diet, exercise, treating my high cholestrol. When you look at a photo of my family, I stand out as the thin one - I've been thin all my life. I've never smoked and I hardly drink alcohol. Doing all the right things wasn't enough, however - it can't beat genetics.

On January 3rd I came down with a chest infection, which lasted for a month. Four courses of antibiotics later, I still had a hacking cough so my G.P. referred me to a cardiologist for a cardiac echo. I was so angry about this - I thought it was just another test my G.P. was sending me for - I refused to believe it could be my heart. I almost cancelled the appointment! I had just been through a breast cancer scare and found out there was a family member (first cousin) with the breast cancer gene so I was going through that - trying to assess my risks and whether to be tested or not, so I had a lot going on. Luckily I did keep my appointment.

During the cardiac echo, the young man who was performing the test ( basically an ultrasound of the heart), mentioned that there was a "communication between the upper chambers of the heart". I had to wait a few days for my appointment with the cardiologist and in that time had built up so many scenarios in my mind that I was in a state by the time I had my appointment. What did he mean by communication - was it a problem with the conducting system, or a problem with my valves, or a hole, or what? Any other person probably wouldn't have taken much notice of what he had said, but, being a nurse, we know too much for our own good. Enough to know of all the possibilities but not enough to have a really good knowledge of the problem. You can't be naive and oblivious, it's too real: you've seen too many things go wrong to seemingly healthy people.

I had my appointment with the cardiologist. A nurse took my history, did an ECG and a few other observations. By the end of that, I was in tears: how could I ignore all those symptoms, when they so obviously point to a cardiac condition? For years I have had palpitations, dizziness on standing suddenly, a cough, and migraines. For years doctors have fobbed me off or told me it's from stress, and now this nurse was telling me my symptoms pointed to heart disease! My panic level rose ...

So the cardiologist reviewed my echo results and said I have a PFO. Pardon my ignorance, but I had never heard of that and had to get him to write down what it stood for: a patent foramen ovale. It's a hole between the atriums (upper chambers of the heart) that is supposed to close when you're born but in 20% of the population it stays open. Only a small percentage of those (maybe 1%) have problems, which can include migraines and TIA's (Transient ischaemic attacks).

He said that he could fix my migraines if I had the hole closed! I had never heard of this before, and because my migraines are so debilitating (daily headaches and runs of migraines that last days), I was very keen to explore the option of having the hole closed. More about this next blog entry