In 2006/7 It came back! The man eating, un diagnosed, un(blood) culturable, tropical bacteria! Moral of the Story – Always get a 2nd and or 3rd opinion!
I really thought I had survived and thrived, and would not have to worry about another op till I was possibly an old man.But early in 2006 (less than 5 yrs later) I started noticing strange symptoms. Symptoms associated with Endocarditis (re infection of the Heart Valves). Due to some unfortunate circumstances things did not go to smoothly.My great Cardiologist, Sean Latouf, had emigrated to Australia. I had no Cardiologist here who knew my History and who could properly manage the process. I was passed around by some very ignorant GPs and Cardiologists, and finally ended up with a Physician/ Cardiologist who was even worse it turned out. He sent me for every test in the book, not believing I had Endocarditis , as it was showing culture negative and I was not showing all the symptoms of the “general” Endocarditis patient.It was embarrassing, in retrospect. I was doing the research and presenting him with findings and case studies, and suggesting I had a re occurring Endocarditis. He eventually decided I may be right, after 6 months of trying antibiotics of different forms, and put me into hospital for a week on a Gentamycin Intravenous Drug Regime. But after a week or so , he concluded I did not have Endocarditis and took me off them and sent me on my way. A month later I visited him again and presented my findings and re occurring symptoms ( night sweats, blood splinters in my finger and toe nails, lack of energy), and demanded he re test, and do another Echo cardiogram on my heart. He refused, telling me not to second guess him, and that there was no way anything different would show.
I took matters into my own hands and through contacts, got an emergency appointment with Dr AD Horack the following day.( it can take 4 months to get appointments with AD, as he is so highly respected) He immediately, after an Echo that next day, confirmed Endocarditis. And it had been active in my body for almost 8 months. My Old Aortic valve was shot! Stretched and damaged, from use and possible Endocarditis. My “ replaced” Pulmonary valve was eroded and damaged from Endocarditis. I would have to be operated on immediately. Wham, Bang, here we go again. Could this have all been prevented 8 months prior, if Nathan had listened to me and taken the correct steps? Probably. But maybe I should have been more aggressive and taken my own steps and actions right then and there, and got other opinions? Hindsight is such a lekker ( nice) thing hey!
So, id have to get a Sorrin, Stainless Steal and Carbon heart Valve into my Aorta, and then another donor valve into my Pulmonary. And with that, Warfarin. The infamous blood thinner ( made from the same stuff that Rat poison is made from). Every day, for life. But first the Op.
It was scary, knowing what I knew, and knowing how horrible and long the pain and suffering (and Risks) of the first Op were. At least I had Tracy (my girlfriend then & wife now) now, who helped me through the preparation, the op and the recovery. WoW what an angel. Massages, food, comfort and help. It made it all so much easier, less painful, more comfortable the second time.The Op was a success, I recovered quickly this time and my after effects where no where near as bad. Again I experienced very poor care and treatment from a particular surgeon, who was monitoring my recovery on behalf of the amazing Dr Susan Vosloo ( who did the op, but had to leave for London immediately after the surgery).
This surgeon, also did not enjoy the fact I knew so much about the operation and the recovery process, and he got embarrassingly animated, loud and rude on one particular occasion, only a day after I left ICU. He had to be calmed and walked out by other doctors….. He then performed a minor procedure on me a few days/ weeks later, where he inserted a CVP line for the IV, into my neck. He botched the procedure and inserted the line into my neck, but into the wrong vein. Instead of my carotid, the line had lodged down my left shoulder and arm. When I questioned why they had not sent me for xrays, as they are supposed to do to ensure the line is sitting in the correct position before the Drugs are administered, I was told it was not necessary and that I should not be questioning his work. They started pumping the Drugs into my arm, which got incredibly uncomfortable and then extremely painful. I eventually pulled the plug myself, as requests for the surgeon to come back and check me, fell on deaf ears. I personally stopped my drip, and telephoned an Anaesthetist I know, for advise. He was shocked at what I told him and arranged for me to get xrays done immediately. The line was lodged right down my shoulder and into my left arm, and who knows the result and consequences, had I not stopped that IV drip. The surgeon came back eventually to re locate the CVP, and with no emotion nor apology, he re did it and got it right this time. The GOD Complex is alive and well, and unfortunately I got to experience it first hand. Some of these surgeons are brilliant at what they do, but their manners, personalities and professional patient service, leaves a lot to be desired.
Anyway, I remained on a regime of Heavy IV drugs to ensure we killed this Re occurring Bacteria, this time. 2 more weeks in hospital with IV lines permanently attached to my very sore, now needle damaged and collapsed veins. And while this was going on, Tracy and I were building a house? Tracy was left to project manage, and what a fine job she did.
I was released, and the following few months are a blur….. I rested and recovered at home and built a house. And then, it came back!Still undiagnosed. This Bacteria would not grow cultures in the blood, and therefore no one could determine what bacteria we were dealing with, and therefore what Drug/ Antibiotic they needed to kill it.Back into hospital I went. This time for 8 weeks. Yes, 8 weeks on a new cocktail of IV administered, very potent, antibiotics. One drug into one arm and the other into the other 24/7 – ( later changed to a CVP line into my neck) as my veins in my arms became so damaged and collapsed from daily blocked needles and lines , that they eventually just could not give blood any longer.I lasted 7 weeks in my small room – The amazing Nurses, and Sister …. Had me secretly upgraded to a private room at no extra cost ( thank you , for that lifesaving jesture).I had a daily regime of needles and Gentamicyn and Amicacin via IV. I had my exercise routine, my Pilates Ball, my walking route and visit to the coffee shop on the 8th floor, and the masseuse and rehab room on the ground floor. Over 50 days. Each day.
I had found a young, dynamic and specialist Physician named Nick Slapperbersky before going in for my op. He was managing my treatment, and now researched similar cases and was prepared to work with me and take this Bacteria head on. He was the one who implemented the newer and stronger and longer regime of IV Drugs. Like me, he wanted to eradicate this demon of a bacteria.He also understood me as a person ( although he did not always agree with my choices) and realised what being couped up in a hospital room would and was doing to me.Again he found a way to help get me out while still remaining on the 24/7 IV drugs. First we figured out a way for me to carry my bags of IV fluid, hooked up to an electronic device that would slowly deliver the correct flow amounts in to my veins. The device had a 6 hr battery life, so I could start doing trips home to oversee the building process, and let me spend time with Tracy and Family outside of the hospital. Eg Xmas and New Years Eve.I then went home permanently and with the help of a daily Nurse, I set up and could administer my IV lines, drips and Drugs at home. Which I did for a further 2 weeks. This was not an easy time either, but it was a far more positive environment than hospital and it assisted in my recovery.
It took another 6 months for me to feel normal again, and before I could take part in the sports and daily pursuits I loved. Only after a year, was I possibly back to being close to as fit and healthy as I had been before. But again, an operation of this magnitude (4 hrs in surgery this time/ as opposed to almost 7 the first) knocks one both physically and psychologically, and again this “experienced’ took a little piece of me ( body and mind), that will never be recovered.
I write this, only now 16/06/2012. Although I again survived and have thrived since this OP, I definitely feel more vulnerable and a little less resilient after having this BUG come back and get me again.To see what I have been up to, enjoyed, achieved and lived for, since this last op, please go to my, ABOUT ME page.