Ron's Personal Story

Current Age: 55

Occupation: “Retired” Computer Product Manager

Your Family: My wife Annie who is incredibly supportive

When you found out about your condition:

In early 2002 I started experiencing breathlessness. My GP found nothing wrong. Then developed agonising lower back pains (unrelated?) and started taking the heavy-duty pain-killer diclofenac. Some days later I collapsed and our home blood pressure monitor showed a very low reading. Urgent call to our doctors brought a different GP along who quickly diagnosed a heart murmur and whisked me into hospital. Various tests, including a T.O.E. (yuk) showed that my mitral valve was leaking. Can’t remember the exact condition name, but it was described to me as if several cords of a parachute had snapped and were flapping around. My Cardiologist recommended a valve repair/replacement.

How you prepared for surgery:

As I was still reasonably active, we decided to proceed with a pre-booked holiday to Egypt before the operation. After our return, but still a week or two before the op, I decided to have a loose tooth removed to prevent infection getting in. BIG MISTAKE! Sometime between the diagnosis and the operation Endocarditis (staphylococci) took hold, I was pumped full of heavy-duty antibiotics, and the operation was brought forward.

The upshot was that my valve had suffered such damage from the endocarditis that a repair was impossible and a replacement was the only option. Apparently it was a somewhat difficult operation — I spent almost a week in ICU/HDU before being transferred to a ward.

Type of surgery: Mitral Valve Replacement

Medications before surgery: Vancomycin, Netelmycin (approx 3 weeks) and Risamphamine (IV then oral).

Medications after surgery: Antibiotic treatment continued until 13 August 2002. Warfarin. Am currently also on Sprironolactone, Ramipril and Amiodarone.

Type of valve: Sulzer Carbomedics size 31 — surgeon S. Livesey FRCS

Hospital where surgery was done: Chalybeate Hospital Southampton UK (now BUPA Southampton)

My experience there:

Post-op I spent several days in Intensive care and then weeks on intravenous antibiotics. In total, I was in hospital for a total of almost 7 weeks - it cost my insurance company so much money I’m surprised the hospital didn’t name a wing after me...

The staff were great and got used to me power-walking round the corridors towing a drip stand. Towards the end I was very bored and allowed out on a sort of “day release” either for walks (did get some funny looks with my central line lumens hanging from my neck) — or Annie taking me for a drive. Did get a severe earbashing after walking several hundred yards down the road to another hospital to get a magazine and some decent sandwiches — wheeling my heparin pump on its stand. The nurses were decidedly not amused. Seven weeks can drive you somewhat crazy!

My first few days home:

I was fairly well recovered physically after such a long spell in hospital. I really enjoyed some good food — intravenous antibiotics play havoc with your appetite. I’d lost a fair bit of weight in hospital — but I’ll not make my fortune selling the method as the latest diet revolution! INR was all over the place due to the antibiotics and I was punctured on a regular basis.

My recovery since then:

In December 2002, some 5 months after the operation, I again started to get breathless. I then had acute heart failure to add to my collection! Diuretics resolved the heart failure, but my left ventricle turned out to be quite damaged from the endocarditis. My echos showed a very low LVEF of 12 - since then they have been between 10 and 20.

During Jan/Feb 2004 I had a bout of AF and am currently (September 2005) on Amiodarone — but my cardiologist has now agreed to help me to come off it.

I’m currently fairly active, swim crawl for half-hour several days a week and play mediocre golf. I do enjoy cross-country walks, my highly tuned sports lunch — a couple of pints of bitter for fluid and a packet of potato crisps (chips) to replace the salt — keeps me going on solo single day walks of up to 30 miles.

I really don’t feel physically inhibited at all — surprising when you consider my heart damage and very low LVEF.

Other comments to share:

I self-test and self-dose with a CoaguChek which has been a Godsend, particularly whilst on holidays. My INR can sometimes shoot up a bit — it’s maybe my liking for real ale and good wines not helping, but as I drink consistently (consistently more than is really good for me), I can’t really see how.