The Team Works –
(Talented & Special Individuals Working in Unison is a Recipe for Outstanding Care, Performance, & Success).
I was admitted to UHSM on the 15th of June 2014 having had Restrictive Cardiomyopathy for 10 years. This my story.
From the outset when my condition was first diagnosed by an excellent Cardiologist by the name of Nicholas a heart transplant was always on the cards it was simply a matter of time. Nick told my wife and I that eventually the regime of medication which he started me on would cease to have any effect and work properly and it was at this point I would require a heart transplant. Nick did an excellent job my medications worked well and kept me going for 9 years feeling pretty good for the first 5 or 6 at least. It was only in the subsequent years the ninth particularly when things began to get tough and the tenth year that my condition deteriorated rapidly. It was at this point Nick referred me to two of the finest gentlemen I have ever had the pleasure of meeting, Steve & Simon who run and co-ordinate the heart transplant list at UHSM (Wythenshawe Hospital).
I was tested and reviewed at their request to ensure I was suitable for a heart transplant, when it was deemed I was suitable physically I was asked to meet the head of Department a Professor who reviewed my condition and case then discussed me with the wider team as to whether I should be listed for a heart transplant. To mine and my family’s relief the answer was positive and it was agreed I was suitable for transplant and could go onto the list.
I am 39 and other than my wedding day and the day my son was born this was the best day of my life. The burden upon my wife and I was lightened and besides all the risks involved and the waiting finally we had hope to grasp onto, the tunnel was shortening and we could see the light and a way out ahead.
The suitability and screening process is very thorough, everything is explained to you each step of the way. This includes all the positives of having a heart transplant combined with all the risks and dangers of what is still a very complicated, difficult, dangerous operation and in short nothing but a miracle.
I was admitted to UHSM on the 15th of June 2014 into the Acute Coronary Care Unit (ACCU) to be prepped for transplant and await a suitable donor organ to be found, the greatest gift a person and their family can give and another person and their family can receive.
Organs are in short supply and more organ donors are needed. If you are reading my story please consider becoming an organ donor yourself. You can make a difference to help someone so please do become a donor.
Being prepped for a transplant for me involved reducing the amount of water I was carrying and being on 24 hour infusions of medications which make you feel like there is nothing wrong with you.
The infusions are constant and are going in 24 hours day and night. They are administered through a Central Line which is inserted into the neck and placed onto a rack which has wheels. This rack becomes a constant feature in your life right up until the day you receive a transplant, it goes everywhere you do, even into the shower with a large plastic bag over it. It’s your constant companion so you might as well give it a name…. mine was called Doris. I lost 3 stone of water in total by the time a donor organ was found and confirmed as a good match. The donor organ met the following criteria for me the right Blood group, Tissue type, and Size.
It was the 16th July 2014 around 03:00 am when I was told by one of the ACCU team a donor organ had been found. I remember being pleased and nervous all at the same time. I was asked to start to get ready at around 05:00 am and call my wife which I did. My wife was extremely apprehensive and worried now the day had finally come. I however was quite relaxed about the whole thing due to the fact I had read nothing about the risks of transplants and she had. By the time I was admitted to ACCU I no longer cared about the risks involved I just wanted to feel well again and as I was on borrowed time anyway, all possibilities were worth the risk.
I was taken down to the theatre area by a transplant coordinator who kept my wife and I up to date with news on how long it would be before I was taken to undergo the operation. I thought it went quickly the waiting part but my wife told me later they started to sedate me pretty soon after I got down to the theatre area which explains why it went quickly and the chit chat was flowing with the theatre nurses. My wife was told I was going down to theatre then I gave her a kiss told her I loved her and it was all going to be all right. I remember nothing after this point until I woke up 17 days later. Over to my beautiful wife Lyndsey;
I was taken away by Jane to our families, keeping it together until I saw them. (I cannot imagine ever having to have to go through this without the support network we had.) I promised myself I was going to be strong through this however seeing the pain and worry in everybody’s eyes just made me crumble.
The minutes and hours that passed were the longest of my life, messages of love, luck and support came from everyone, everybody was routing for him. Jane, the transplant coordinator kept us informed of Marks progress throughout the day. 12:50pm the new heart had arrived at Wythenshawe hospital. 4:00pm Marks new gift was in and had started pumping straight away, this is a very rare occurrence, and usually it takes a while for the heart to get pumping often needing a little help along the way. Knowing this we now said Mark had a new Ferrari engine! 6:30 pm Mark arrived in CTCCU. 7:30pm we were allowed to see him.
They prepared us by telling us there would be more medical equipment than you can imagine. They were not wrong, totally overwhelming but at the same time somehow reassuring and calming. Mark was there, he had done it and he was mine again. Then came the blow Mark had suffered two major anaphylactic shocks to the platelets in the blood and antirejection drugs right at the end of surgery. This had caused massive problems with his whole body, especially his lungs and for the next 12 days he was kept asleep. We were told all sorts of unimaginable information, like they were going to have to re operate, add pumps to the heart, do procedures to his lungs….the list goes on. The team of doctors went above and beyond to keep Mark alive……… and me sane. I really can’t thank them enough, they are truly very, very special people.
The days that Mark was asleep all seemed to roll into one, helping me cope were little pieces of advice like writing to Mark each day about what had gone on. My first quote of the day to Mark in his first letter was “so it’s not going to be easy, it’s going to be really hard; we’re going to have to work at this every day, but I want to do it because I want you. I want all of you, forever, every day. You and me….every day.” If only I had realised how tough!
Throughout every day I read him the paper, played him Pink- Just Give Me a Reason and John Legend All of Me and read him inspirational quotes from The Secret. Everybody must have thought I was mad but it kept my strength up. What also kept me going was the love and support from family and friends. They all mean the absolute world to us!
The 7 weeks that followed (obviously one who likes to milk it) were very up and down, Mark scaring us half to death with funny heart rhythms, wonky kidneys and just refusing to be weaned off the breathing machine, meaning that when he did eventually come round he had to have a tracheostomy fitted.
It took a long time for the sedation to get out of his system. I have to admit we had some hilarious conversations at this time including Mark planning his escape out of the hospital (he couldn’t move a muscle) and me being pregnant! Funny what drugs do to you.
The day I knew Mark was back in the real world was when he finally looked me in the eyes-he hadn’t done that for a long time, and told me he loved me. He was back, he had done it and now the real hard work began.
Upon waking I was aware that I could see and hear properly but that I could not move any part of my body not even my head. All the time I was coming around and the drugs were wearing off I did not think I was in hospital I thought I was in Marks & Spencers food hall which I thought was very handy and could see fruit, drinks, jelly, bottles of wine, cheese, ham all sorts of things that I wanted to eat and get stuck right into. When the drugs finally wore off and I realised I was in hospital (I was a little disappointed to say the least). I had the wanting and needing to get up but I just did not have the strength. After 12 days asleep and another 5 or 6 days coming around my muscles had wasted away and I was helpless. I always believed I was going to be back to how I used to be even at this early stage and I took on board the advice from the nurses and the physiotherapists and started to follow their instructions. Moving my head a little at a time at first and doing the exercises they had given to me regularly. Each day that followed very minor improvements were being made, small steps towards me being able to walk, move, and function properly again. I even had to learn how to eat and drink which in its self was a task. Once the initial test of eating a dry cracker had been completed then came the problem of trying to actually feed myself. The medication you are on combined with the lack of muscle tone and strength means every mealtime you look like you are auditioning for a part in carry on dining. You cannot control the shaking of your hands and food goes everywhere, I used a sealed beaker for drinking with a straw in or it would have been an impromptu shower of tea, orange juice, water or whatever it is was I was trying to drink for both me and the nurse looking after me.
When eventually I was strong enough to get up (when I say get up I mean get dragged to a standing position assisted by a machine). The machine basically pulls you to your feet. I found it very hard to move forward due to the weakness of my muscles combined with the water I had accumulated once again. The 3 stone of water was back on me and I struggled under the weight of the water, my natural body weight and the muscle wastage I had. The nursing team all of whom were great Stuart, Abigail, Jess, Chloe, Charlotte, Claire, Rebecca, John, Sophie, Sarah, Amanda, and the rest they know who they are and the Physiotherapists Chris & Laura and a student Physio helped me in a huge way with all the encouragement and care they gave to me, I can never repay them but I often think about them all. I must have been through nearly every piece of Physiotherapy equipment Chris & Laura had available and could muster but they got me walking with a gutter frame at first, then with a Zimmer, then with 2 sticks. Getting to walk with 2 sticks was amazing because I could now see big progress daily and even do the things that make a difference like taking a shower each day as I could manage to stand up and keep my balance under the spray.
I was moved to the Jim Quick ward close to the end of August which meant I was doing well and was now pretty stable and ready to start taking the final steps towards being allowed home. Everybody on the Jim Quick ward was great as well, Evelyn, Fiona, Michael, Jerry, Anthony. I spent probably just over 2 weeks on Jim Quick and this is where leaps and bounds were made in terms of progress in my mind. I was walking now with two walking sticks and practicing getting up and down the stairs. This is a pre-requisite to being allowed home the fact that you can climb a flight of stairs under your own steam. I was shown how to use the sticks to assist me to go up and down stairs. I started on a flight or around 4 or 5 practice steps and then progressed to a full flight of stairs. Believe me once I started I wanted to just keep doing it over and over again up and down just to prove to myself that I could. I only stopped when I was physically too tired to do it again. In fact I did that much exercise the day before I was finally allowed home on Friday 5/9/2015 I could hardly move any of my muscles without them aching on that Friday. Jim Quick is the place where you learn your medications, what to do, what not to do, what to look out for and what you should never do. You learn all about the Anti-Rejection medications and other medications you will be taking for the rest of your life when you are to take them and how. They have a computer programme which is a computerised learning tool which you have to have completed before you can be given a going home date. I spent 3 to 4 hours on the programme making sure I had done it properly and understood it all correctly. After sitting in a relatively uncomfortable chair for nearly 4 hours at the work station I thought I was back to square one as when I tried to stand up at first I could not do it – oh bloody hell I was thinking.
I was released to go home on Friday 5/9/2015 which was a great day and as usual all the people who had supported me throughout were there my wife, my mother and my father. These 3 people had been a constant feature throughout my journey visiting me every single day from my initial admittance on June 15th to release. As a family I had massive support my son George stayed strong throughout and looked after his mum. Lynne, Barry, Joanne, Neil and Lesley all helped out when needed. This support is what really helps keep things as normal as possible for young children.
I started working from home on 2/11/2015 with a couple of days in the office until the end of December 2015. I started back at work full time on Monday 5/1/2015 and it’s all going very well now.
A big Thank You to the team at UHSM, my wife, mother, father, son George, and the rest of my family without whom this whole experience could have been a lot more difficult.