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Sue



Posts : 2
Join date : 2008-03-03

PostSubject: Another story   Mon Mar 03, 2008 7:40 pm

Dero has gone to lots of trouble to get this forum up and running and it's a brilliant source of information, so thought I'd share my story in the hope that it helps someone too.

I am a 49 year old woman - a rare visitor to the doctor until just over 3 years ago when things started to 'go wrong'. November 2004 found me with a pain originally in my LH wrist - accompanied by an angry looking red welt it started to spread up my arm. A trip to the emergency Dr and I was told it was cellulitis probably from a mosquito bite on my hand. A course of anti-biotics and a total of 4 trips to the Dr and the arm remained sore - I couldn't flex it straight and you could see and feel a hard length of vein running between my wrist and elbow. I didn't feel well throughout - hence the regular trips to Dr but was told it was inflamation and it would take a while to reduce!!! After 3 weeks I came home from work - went straight to bed, waking only to feel like I was drowning - I couldn't breathe deeply and another visit to Dr resulted in an emergency admission to hospital where they eventually discovered multiple bi-lateral pulmonary emboli. 5 days in hospital and a 3 month course of warfarin and I was fit to go..... everyone assured me it was so unusual it was unlikely to repeat. I had thrombophilia screening after I'd been off warfarin for 6 weeks and was told all was good and to put it behind me. (April 2005)

August 2005 - I had been fine but a new job, daughter waiting on exam results - about to go off to university, husband in hosp etc saw me really under the weather - I had chest pain, anxiety, palpitations - I didn't know what was wrong with me. A few trips to casualty and the GP and I was told anxiety, maybe the menopause.... and I accepted that as the case and continued to get through each day in a decidedly below par kind of way. Jan 06 - back to the GP with back pain and looking back on my records he discovered I was hypothyroid and was promptly put on medication (synthyroid). I'd like to say that helped but I spent the next couple of months trying to get stabilised on meds... then my mother died v suddenly. I spent the Summer of 2006 not knowing what was wrong with me I wasn't well but symptoms of menopause, grief and thyroid all seemed relevant so I just kept going and what wasn't normal became normal and you accept the new order of things.
Fast forward a year and some fairly intensive dental work in May 2007 (I had a total of three teeth extracted). Three weeks later I felt some discomfort when breathing in - like a stitch but I slept it off (a mistake I think now) but in all honesty I couldn't face going to hospital again. For weeks after I felt distinctly unwell but no specifics just a general feeling of weariness - back to the Dr - my thyroid levels were rising so felt it could be that but also decided as a precaution to do a D-dimer test to rule out PE. The next day saw me back in hospital (D-dimer raised) and CT scan - there was no evidence of embolism - my test results were good and I was told no problems physically, suggesting either thyroid related or anxiety!!!! So discharged from hospital (friday) and planning to go on the holiday I had almost cancelled. That weekend I was so unwell.... scouring the internet to try and work out what was wrong with me I probably spent too much time sat at the computer - decided I may have had reaction to contrast dye used for CT scan I battled to get well. Sunday morning my left leg ached - really severe case of cramp, I tried to walk it off and it eased but continued to ache. Monday I was back at GP for results of tumour marker test on an ovarian cyst I had presented to the Drs with April 2007 - he had wanted to do a tumour marker test. Apprehensive about this and still below par + needing to get his agreement to cancel the holiday on health grounds I mentioned the cramp only in passing (2nd mistake). Tumour marker was ok and he agreed I should cancel the holiday. Wednesday saw me back at casualty my leg was so sore but it wasn't discoloured or hot, just ached and I had three v small red patches near my ankle which had flared but faded overnight. The consultant I saw said no DVT.... probably tendonitis and to go back if it got worse - my calf was approx 4 cm bigger than right leg but like he said no-one has legs exactly the same - just take a pain killer and it would resolve. I tried to get better but Friday saw the pain spreading - my inner thigh ached, a sleepless night and back to the hospital and an admission to the emergency ward. 8 hours on a trolley - a raised D-dimer again but another diagnosis of a muscular problem - possible DVT but it was the weekend they were unable to scan and decided fragmin injection and treatment as an outpatient with a scan within 5 days. I sat on the trolley crying and begging them to admit me - I was so worried that if it was DVT I stood every chance of a PE - no admission they said the treatment would be the same even if it was a DVT and unable to walk I had no choice but to return home and struggle up two flights of stairs to bed. Sunday back for my outpatient appointment I could hardly walk but got there returned home and suddenly found I couldn't breathe......my pulse started skipping - hospital emergency admission and straight to the high dependency unit. IV heparin and warfarin followed.

In the UK the consultant on duty takes your case, so an endocrinologist and his registrars were responsible for my care..... to be honest it was non-existent apart from being told I had multiple pulmonary emboli (couldn't wouldn't tell me how many) I have no detail of the extent of what had happened. After a week in hospital I was discharged on 2 mgs of warfarin.... still unable to walk but they wouldn't scan to find DVT as the course of treatment would be the same. I was so unwell - baby steps and one trip round the garden was as much as I could do. I got better - gradually increasing my walk and lung capacity, got back to work in Sept 07 but then a setback in October. My INR had been stavble but dropped to 1.7 - then 1.8 and despite remonstrations that I had been advised it should be nearer 3.0 the warfarin clinic (pharmacy here) would only make a small increase and so for 5 weeks I was sub-therapeutic. I think this caused me some lung pain - my oxygen level showed as low and I was back in hospital.

This time it got scary as attention turned to that 'cyst' - suddenly they were investigating possible malignancy, the tumour marker was now raised and I was scheduled for emergency MRI scan. You can imagine the trauma - but my consultant this time (another endocrinologist) was very thorough and also referred me to a haematologist. The MRI scan revealed bi-lateral hydrosalpinx (I always do things in two's!) but with a further one scheduled for the New Year to make sure.

Jan 2008 - an appointment to see a haematologist - result of types.... it was a very busy clinic New Years Eve and patients were queueing out of the door but it turns out I have factor II mutation. I've found out lots more since but didn't ask why it hadn't shown up on my original screening it is inherited so always present. I'm pleased to at least understand why this may have happened - my theory is that hypothyroid to start with my blood/system was a little sluggish - factor II relates to sticky blood and I think that the dental extractions set off the clotting problem (?). The rest is history - it was a scary traumatic time and not just for me my whole family suffered.

The 2nd MRI scan confirmed the hydrosalpinx but choices with that are limited due to my high risk and an operation would be best avoided I am now on warfarin lifelong. Whilst thankful I'm here to tell the tale I do get upset and worriedabout taking the warfarin (I'm now on 6mgs and INR is over 3.0 on a range of 2.5 - 3.5). I do find it a tremedous support to 'chat' to others who have had simailar experiences. I'm back at work full time - by and large I think I'm tolerating the warfarin fairly well but ocassional niggles and pains but so much better than I was.
What a long post........ but it helps to talk I think.
Best wishes all
Sue Smile
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dero
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Join date : 2007-12-09
Age : 57
Location : Near Ottawa, Ontario Canada.

PostSubject: Re: Another story   Mon Mar 03, 2008 9:14 pm

First off Sue, welcome to "Life After DVT" what a trek you have been through, you are a trooper!!!
Are there any other options for the "bilateral hydrosalpinx" , aside the operation?
And here I was thinking that it was the end of the world for me with my single DVT... Embarassed

Thank you for sharing this Sue.
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Sue



Posts : 2
Join date : 2008-03-03

PostSubject: Re: Another story   Wed Mar 05, 2008 8:07 pm

Thank you Dero

I don't think I am a trooper - cathartic to write but I feel as though I do need to move on from being ill. Mostly I feel much better but it was just one thing after another and my confidence healthwise has been shattered - but I am trying to get back on track. The hydrosalpinx is basically fluid in fallopian tube - I think it can be safely left unless it flares up and causes me pain and then I think keyhole surgery is an option but they would prefer to avoid if possible. To be honest the gynaecologist scared me so much about what a high risk patient I was I'm not at all keen to face any kind of procedure. It's all comparitive - everyone has suffered some kind of loss healthwise or shock to their system through their experience of DVT/PE - I try not to let it overwhelm me but we all have our off days don't we (lol). You've definitely turned the negative into a positive through your very helpful site and comments.
Take care and thank you
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