T
terence
Hello,
At the end of the last thread I started Freddie and Phyllis suggested that, seeing as my condition appears to be relatively unique, I start a thread up on my experiences - in case it is of use to anyone else here on the forum.
This seems like good advice so here's a summary of my story so far.
Disclaimer: this is my personal experience only. I'm no medical expert and may have got some of the details below wrong. I hope not, though
In 1999, as a result of a Salmonella infection, I ended up with Reactive Arthritis*. Since then the illness has come and gone, at times leaving me on crutches, at times leaving me more or less alone. When I have had trouble it was usually in my feet or back. In 2005, possibly because of a serious ear infection, the arthritis flared up with a vengeance. For a time I was not only in considerable pain but also at my whit's end when it came to a treatment pathway. Then I got lucky and via a friend of a friend came across a doctor and a naturopath based in Australia who, through a course of long-term low-dose antibiotics coupled with a diet change, appear** to have beat the disease into near remission.
Unfortunately, I also got unlucky at sometime (probably during 2005) as inflammation associated with my arthritis also did significant damage to my aortic valve and ascending aorta. According to a rheumatologist friend of mine, aortic valve damage associated with Reactive Arthritis is a textbook complication of the illness that he's only ever seen in textbooks (i.e. very rare).
Initially, I hoped I might escape without surgery, as I had relatively few symptoms, but my first echocardiogram (how do you spell that?) put paid to any such hopes in this area.
Once surgery was on the cards, I then had to deal with several hurdles particular to my situation.
The first of these was whether there might still be active inflammation around my heart (as opposed to inflammation having come and gone in the past, leaving only the damaged tissue). If there was inflammation this might make surgery more difficult and risky. Dampening such inflammation through drugs like steroids could help, but these medications also present problems for open heart surgery. Because my CRP (C-Reactive Protein) levels were low and because I had little inflammation elsewhere in my body, we were hopeful that there wouldn't be inflammation around my heart. Hopeful, but not wanting to leave anything to chance (my motto is the fewer surprises for your surgeon the better) I had both an MRI and a PET scan - the PET scan providing the good news that I appeared to be inflammation free around my heart. Funnily enough, when my surgeon actually opened me up he discovered tissue that may actually have been actively inflamed. Not so inflamed to cause problems though.
Active inflammation or not, there remained an additional problem for my surgeon - what was it going to be like working on tissue scarred by previous inflammation? He spoke to another surgeon who advised him that the scar tissue ought to take sutures well, the only problem being that it could be hard to get the needle through. I never actually asked my surgeon about this after surgery, but I guess I'm living proof that the scar tissue can't have been too hard to suture.
My third worry was that my body might react to the trauma of surgery by becoming severely arthritic again. I had some reason to suspect this might occur (over-exercise has exacerbated my arthritis before, for example) but, thankfully, thus far (5 weeks after surgery), this doesn't seem to have occurred. My CRP is elevated at present this is probably a natural byproduct of surgery and rest of me isn't particularly arthritic.
My final worry was less peculiar to my condition: how much of my ascending aorta needed to be replaced along with my valve? As people here probably know, beyond a certain point, further replacement of the ascending aorta requires placing you into circulatory arrest, which elevates the risks of surgery. (Once again) fortunately, I didn't need this, but no one knew that for certain until they started the surgery.
And, after all this worry, my surgery went great on the day. Seven hours, four on the heart lung machine, so long but followed by a recovery that, thus far, has been problem free. I got a mechanical valve (St Jude, I think) attached to a long piece of artificial aorta. It's ticking away happily as I type.
That's my story to date. If you end up on this forum because your aortic valve has been damaged by Reactive Arthritis (or Ankylosing spondylitis, another similar illness) please feel free to send me a message via the messaging system and I'll try and tell you more of what I know.
====
*Reactive Arthritis is sometimes called Reiter's Syndrome but, for reasons I describe here, I don't use this term. I did think I should mention it though in case someone searches the forum on the terms Reiters Syndrome
**I say 'appear' because there is a chance that I spontaneously went into remission. You can read more about my experiences with these doctors here.
At the end of the last thread I started Freddie and Phyllis suggested that, seeing as my condition appears to be relatively unique, I start a thread up on my experiences - in case it is of use to anyone else here on the forum.
This seems like good advice so here's a summary of my story so far.
Disclaimer: this is my personal experience only. I'm no medical expert and may have got some of the details below wrong. I hope not, though
In 1999, as a result of a Salmonella infection, I ended up with Reactive Arthritis*. Since then the illness has come and gone, at times leaving me on crutches, at times leaving me more or less alone. When I have had trouble it was usually in my feet or back. In 2005, possibly because of a serious ear infection, the arthritis flared up with a vengeance. For a time I was not only in considerable pain but also at my whit's end when it came to a treatment pathway. Then I got lucky and via a friend of a friend came across a doctor and a naturopath based in Australia who, through a course of long-term low-dose antibiotics coupled with a diet change, appear** to have beat the disease into near remission.
Unfortunately, I also got unlucky at sometime (probably during 2005) as inflammation associated with my arthritis also did significant damage to my aortic valve and ascending aorta. According to a rheumatologist friend of mine, aortic valve damage associated with Reactive Arthritis is a textbook complication of the illness that he's only ever seen in textbooks (i.e. very rare).
Initially, I hoped I might escape without surgery, as I had relatively few symptoms, but my first echocardiogram (how do you spell that?) put paid to any such hopes in this area.
Once surgery was on the cards, I then had to deal with several hurdles particular to my situation.
The first of these was whether there might still be active inflammation around my heart (as opposed to inflammation having come and gone in the past, leaving only the damaged tissue). If there was inflammation this might make surgery more difficult and risky. Dampening such inflammation through drugs like steroids could help, but these medications also present problems for open heart surgery. Because my CRP (C-Reactive Protein) levels were low and because I had little inflammation elsewhere in my body, we were hopeful that there wouldn't be inflammation around my heart. Hopeful, but not wanting to leave anything to chance (my motto is the fewer surprises for your surgeon the better) I had both an MRI and a PET scan - the PET scan providing the good news that I appeared to be inflammation free around my heart. Funnily enough, when my surgeon actually opened me up he discovered tissue that may actually have been actively inflamed. Not so inflamed to cause problems though.
Active inflammation or not, there remained an additional problem for my surgeon - what was it going to be like working on tissue scarred by previous inflammation? He spoke to another surgeon who advised him that the scar tissue ought to take sutures well, the only problem being that it could be hard to get the needle through. I never actually asked my surgeon about this after surgery, but I guess I'm living proof that the scar tissue can't have been too hard to suture.
My third worry was that my body might react to the trauma of surgery by becoming severely arthritic again. I had some reason to suspect this might occur (over-exercise has exacerbated my arthritis before, for example) but, thankfully, thus far (5 weeks after surgery), this doesn't seem to have occurred. My CRP is elevated at present this is probably a natural byproduct of surgery and rest of me isn't particularly arthritic.
My final worry was less peculiar to my condition: how much of my ascending aorta needed to be replaced along with my valve? As people here probably know, beyond a certain point, further replacement of the ascending aorta requires placing you into circulatory arrest, which elevates the risks of surgery. (Once again) fortunately, I didn't need this, but no one knew that for certain until they started the surgery.
And, after all this worry, my surgery went great on the day. Seven hours, four on the heart lung machine, so long but followed by a recovery that, thus far, has been problem free. I got a mechanical valve (St Jude, I think) attached to a long piece of artificial aorta. It's ticking away happily as I type.
That's my story to date. If you end up on this forum because your aortic valve has been damaged by Reactive Arthritis (or Ankylosing spondylitis, another similar illness) please feel free to send me a message via the messaging system and I'll try and tell you more of what I know.
====
*Reactive Arthritis is sometimes called Reiter's Syndrome but, for reasons I describe here, I don't use this term. I did think I should mention it though in case someone searches the forum on the terms Reiters Syndrome
**I say 'appear' because there is a chance that I spontaneously went into remission. You can read more about my experiences with these doctors here.