Transplant Recipient - Heart
My story - I know we have all got our own stories to tell but there is only one way to tell it - as it was.
It was Tuesday the 31st of October 2006 and we were both getting ready for work. Rom had hung out the washing and came in and noticed that I had dressed in warm clothes. He said to me that it was warm and muggy outside and that I should change into cooler clothing.
Rom was heading north into the mountains with his work in real estate and went to his office first. I had to take Riley, our Grandson, to Kindergarten that morning and I dropped Riley off and was heading down the lane to the shop in the main street when I saw Rom leaving his office. I said to him that I had some cooler clothing to change into later.
Around 12.45pm I started to feel ill and as if someone was pushing their fist into my chest. I went to sit down but could not sit still and thought I better tell Alan and Marcel who ran the Video store next door that I was not feeling well. I thought this can't be right and went back and tried to sit down.
The pressure got worse and I eventually asked Alan to call an ambulance. He told me to go and sit down but I just made it back to my shop and collapsed onto the floor. Wendy from the Bakery was in the shop and sat with me until the ambulance arrived. Alan called Adrian, our son, who is a Teacher at the Secondary College and he got Abbey, our youngest daughter, out of class and they came to the shop.
The ambulance arrived and by pure chance a Mica Paramedic from Bairnsdale was driving into town and noticed the ambulance parked in the main street. He came in and offered invaluable assistance. I was taken to the Orbost Hospital and was told I would be home in a couple of days. At approx 3pm and then again at approx 3.15pm I went into cardiac arrest and the 'paddles' had to be used. Rom arrived back from his appointment in the mountains approx 3.45pm and knew things were not right and asked where the 'choppa' was. It arrived at approx 5.30pm and I was airlifted to Monash Medical Centre approx 7pm.
My Dad was also at Monash dying of heart failure and he had been there about ten days. He was 80 years old and we knew he wasn't going to make it.
Renee, our eldest daughter, was in Melbourne at the time and was the first direct family member at the hospital and was told that things were not too good. Rom, Abbey, Adrian, Anna his partner and Codie and Riley my Grandsons, and Russell my brother arrived at Monash approx midnight to be met by all of my family living in Melbourne. The Doctors came up and asked for Sue's family and 24 members stood up. They were told that I would not make the morning as it had taken too long to get me to Melbourne. No one could say anything to my Dad and it was hard. They had to wait for some more news. He was on the 4th floor and I was on the 2nd floor.
The staff at Monash could not believe that two members of the one family could be so gravely ill at the same hospital at the same time from so far away.
The days went by and by Friday evening I was taken off the balloon pump and the family told that I had a chance of making it. It was then that the family told my Dad what had happened. He wanted to see me but I was still in a coma.
Rom saw him every day and Dad kept saying he wanted to see me and by Tuesday he was convinced that I had not made it. Rom promised him that I was still there and that we would get together either Wednesday or Thursday. I was brought out of the coma on Thursday morning and we got together at approx 3pm for about 20 minutes. We had some beautiful photos taken and it was the last time I saw my Dad alive. I told him I would come and see him on the Sunday but he left us at about 8am on that Sunday morning. I went up with Rom to say 'goodbye' to him for about 20 minutes with other members of the family.
The family delayed Dad's funeral until the following Saturday to give me every chance to be there. On the Thursday I was told that I would be transported back to Orbost Hospital and I was allowed out for the Saturday service. The following Thursday I was allowed home.
Things went along quietly for a couple of weeks but I had a bad turn on a Thursday early in January. The ambulance had to be called and I spent the night in Orbost Hospital and wenthome the next morning. The next day I collapsed again and spent three days in hospital. I had an appointment at Monash on the Wednesday morning for some tests and when I was having the tests, Rom went up to the cardiac ward and spoke to the Doctors who had looked after me during my earlier stay and said there was something wrong.
The Doctors said they would be down to check the results and after doing so admitted me into Emergency with mass heart failure. Plenty of fluid was drained in the next half hour or so.
I was admitted and the next morning the team came to do their rounds and said to me "we are referring you to The Alfred for a Heart Transplant assessment" !!!!!!!!!!
I stayed there for another few days and came home for a couple of days before we went to The Alfred.
The 24th of January 2007 we went to the Clinic for an assessment. Within 10 minutes I asked how sick do I have to be for a transplant and the reply was "Sue, you are not going anywhere - you qualify now" and I was taken to the 'cage' in the old 3B and wired up.
I spent the next two months there and had a 'DOR' procedure done. I was told it couldn't be done but the 'Magic Man' Professor Don Esmore performed the surgery. A Defib was fitted and I also had a couple of close calls during this period. I was discharged in late March the day before for my youngest daughter, Abbey's, Deb Ball. That was an emotional night.
A couple of days later and things went pear shaped again. More heart failure and fluid, air ambulance back to The Alfred and so on as we all know. In May I was told that my antibody levels were in the 90's which was not too good considering they had to be zero. What pregnancies and blood transfusions do to you. We had to travel down every fortnight for my antibody treatment which started off as a two day trip, then three day trip and four day trip before finally on Christmas Day 2007 I had another bad turn. From then on it was an Air Ambulance trip every fortnight until the end of March 2008.
In September a VAD was also mentioned but fortunately I made it through without needing it.
I had two false starts - one on the 14th of August 2007 when I was put on standby and had it called off after an hour. It was a good practice run in hindsight. The second was on the 14th of November - election night. Believe it or not we were at an Organ Donor Awareness Night in Bairnsdale and were stopping with our best friends. We got back to their place approx 10pm and at 10.30pm the mobile rang. We were asked to start driving. It was a three hour trip and I was admitted, chest Xray done, bloods about to be done and then we were told it was OFF. Those bloody antibodies.
We were supposed to travel down on the Thursday the 27th of March but the Air Ambulance was tied up with emergencies and could not take us until Friday.
We got a call on Friday morning at 7.40am to say the Air Ambulance would be at Marlo at 8.30am to pick us up for regular treatment. Plenty of rushing but we know the local ambos and they had a cuppa while we packed. That day I was told that my antibodies were finally at '0' and I finished my treatment at about 2.30am on the Saturday morning as my veins were virtually non existent.
Later that morning I was woken up at about 7.40am. I thought it was the kitchen staff telling me that my breakfast was ready and I nearly told them to go and?!!?? as I was tired.
But guess what!!! - Saturday the 29th of March 2008 at about 7.40am I was told that I had a heart.
We all have our normal ups and downs after transplant and after eight months things might be just settling down for me.
I know that I could not have made it through that 14 month period without the help of those beautiful people from the Heart Failure Clinic and staff at the old 3B and new 3CTC. No names but they know who they are.