Wandering Thoughts

April 1, 2008


Filed under: Aortic Valves,Reactive Arthritis — terence @ 12:52 pm
Tags: ,

It wasn’t that long ago that I wrote a post on how good it was to be largely free of the symptoms of Reactive Arthritis. I spoke to soon, I guess. Some time over the last few years, inflammation has damaged the aortic valve from my heart. It is now leaking, causing my heart to stretch. And I need the valve replaced before my heart itself is damaged. Valve replacement is open heart surgery but the risk of serious complications is small. If things go ok I can expect a 1-3 month recuperation period and a more or less normal life afterwards. If I stay within the public system I can expect to wait between 6 and 9 months for surgery.

I’d be lying if I said I wasn’t anxious, or disappointed – the need for surgery has derailed what were looking to be exciting plans for the year. But, of course, things could be worse.

Anyhow, I intend to write more here about events as they unfold. I do get the odd person coming through to this site who has Reactive Arthritis, so maybe my experiences might be useful. You can reciprocate too. Any experiences of open heart surgery (doesn’t have to be stemming from arthritis, or even valve replacement) are much appreciated in the comments box below.

[Update: If you do read this and have Reactive Arthritis – don’t worry. Heart problems are a very, very rare complication of Reactive Arthritis. A rheumatologist friend of mine described my situation as a ‘textbook complication that you only ever see in textbooks’. So the odds of you encountering similar problems to me are small.]

Oh – and I think there may be a couple of people from work and the immediate surrounds who read this blog. My need for surgery isn’t a secret, but it isn’t public knowledge yet either (partially because I can’t really figure a way of telling people…)



  1. i too had a bout of reactive arthritis in feb2009, it didn’t know what hit me neither did the doctors, i got intravenous antibiotics for 2 weeks and only a visit from my brother who said ” i’ve had this: its reiter’s syndrome and check if you are HLA-B27 POSITIVE ” that brought any sense into my sudden illness, i was then given 2 containers of blood and let go from hospital a week later feeling alot better, but with cortisone and a bunch of painkillers in my pocket… the doctor wanted to give me methotrexate which i refused and i then decide to go and do some other research on my body …( i also went back to try to find the spark… my gynecologist gave me some hormones “to clean out my vagina I’m 57 so i took those and shortly afterwards got conjunctiva in my left eye, then a very bad sore throat that would not go away, then i went to get antibiotics but then the knee swell up… then i was sent to hospital with a 250CRP count… any doctor will be surprised I’m still alive) so in march 2010 i had a exam up my intestine after a very bad spell of diarrhea and they diagnosed me with giardiasis lambia .. gave me flagyl and i feel so much better all my aches and pains are gone .. turns out that reactive arthritis can be caused by this parasite and this is well known among doctors…(also all my aches and pain in my back that i’ve had for years and kept on telling doctors antibiotics made the pain go away and them telling me it not possible..). only the rheumatology department doesn’t.. turns out i was in the wrong hospital department… what happened on top of this was that i got so much antacids that my stomach does not function properly anymore, that is i seem to be very sensitive to histamine in foods which in turn give me the strangest symptoms :each food has its own pet body part , the worst is veal : it gives me irregular heart beats..
    do check for giardiasis …. I’m not going to get this again…. but it might be a food thing… and my immune system is not in working order due to the genetic flaw… check on the wikipedia site all these terms: it might help you .. normally only 2% of the population has this… 11% if you are a eskimo…. or descent thereof… as an American.. there might be some of that in my blood..I’m quite blond with freckles.. my great-great mother was an indian northeast type…
    yours yb ( i can go into even more detail but enough for now)

    Comment by yoyo — November 9, 2010 @ 12:46 pm

  2. Thanks Yoyo,

    I’ve never been checked for giardiasis lambia, so I think I might do that. I’m definitely HLA-B27 positive.

    Good luck with your ongoing struggles with reactive arthritis.


    Comment by terence — November 10, 2010 @ 8:40 am

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