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.
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