This site is for people with DVT, seeking comfort and information from others who understand from personal experience.
HomeHome  FAQFAQ  RegisterRegister  Log in  

Share | 

 My DVT + PE story

Go down 

Posts : 3
Join date : 2012-01-31
Location : United Kingdom

PostSubject: My DVT + PE story   Fri Feb 03, 2012 12:31 pm

OK, so this is the tale of my DVT and PE.

In late late September last year, I was happily walking upstairs with a cup of tea in my hand to the office in the early morning, when I noticed that my right leg was feeling a bit "odd" (just as if one had sprained or twisted a muscle), and would probably not be able to support my weight for much longer. Not wanting to spill the tea, I hurried upstairs, put the cup down, and lay down in the bedroom (I work from home), and asked my wife if she would mind coming and massaging the muscle better.

Within a minute or two, my leg was feeling very painful, and I was getting hotter by the minute (so much so that I had to start removing clothes to try to keep a reasonable temperature). When my wife came in, she started to rub the muscle, but noticed that I was going greyer, clammier and colder by the second, and the leg was going in the opposite direction : deep purple and hotter.

At this point I was in agony (easily 11 on a scale of 1-10!) and my wife decided to call the national medical number. After a few minutes of useless but probably necessary questions she was connected to a nurse, who quickly established that I needed an ambulance to take me to A&E immediately.

Somehow I managed to dress enough to be decent in public and with my right leg now totally useless went down stairs on my bottom (a skill last deployed at the age of 6 months old when my cot broke, and I went down the stairs to tell my parents of this vital fact Smile ). I then sat outside on the doorstep waiting for the ambulance and paramedics to arrive. The cool autumn air seemed to help a little, as I started feeling a bit better. Once the ambulance came, I was placed on the stretcher, and wheeled down the path to the vehicle, and once securely in place the paramedic gave me 100% oxygen to breathe and monitored my pulse. Fortunately it was after the rush hour, so the journey to hospital was quite quick, and I was soon placed on a bed in the A&E ward. I was hooked up to an EKG machine to monitor my pulse, heart rate etc. A succession of doctors and consultants came and inspected my leg and tested my reflexes (the leg by now was totally numb, purple and cold), and tried to work out what had happened. After ruling out a stroke or heart attack, and sending me off for a chest X-ray and leg ultrasound scan, it was decided that I had a DVT. A CT scan confirmed that the clot extended from my knee to 1cm below a vein to my kidneys, and that I also had pulmonary embolisms in each lung.

The initial thought from the doctors was to insert a filter to stop the clot reaching my kidneys, but this turned out to be impossible as a filter is apparently 2cm, so there would be no room to fit one. Instead it was decided to transfer me to the high-dependency unit. Once moved to the HDU, I was put on saline and heparin drips, wired up to the EKG again, and given oxygen to breathe. In total I spent 8 days in there, with round-the-clock monitoring and measuring by the nurses. One of the more unpleasant aspects was that after a few days, my "nether regions" swelled up dramatically, so that I needed a catheter fitted.

During the first week or so, I was unable to move or feel anything in my right leg, so was very dependent on the nurses. Fortunately, I still had a small amount of blood circulation in my leg, so one of the twice daily tasks for the nurse on duty was using a small portable ultrasound scanner to listen to the pulse in each foot. The first inclination I had that I was getting better was when I woke up one morning to feel blood pulsing in my heel. Later that day I could wiggle my toes, and the following day I discovered whilst being moved in bed that I could lift my leg a few cms above the sheets.

Gradually I got more sensation and movement back, so by day 7 or so I started having physiotherapy - walking a few yards along the ward and the corridor, or going up and down the stairwells. I also came off heparin and went on clexane injections prior to going on warfarin. I also needed the oxygen less, except for one night when I woke up startled to be told by the nurse that she had placed the mask on me as I had dropped to 80% oxygen level. However, even so normal functions that most people take for granted, such as washing oneself etc (me included beforehand) became major tasks, with many minutes recovery needed afterwards.

I was allowed home after 10 days, and now take wafarin and have the regular INR tests (every 6 weeks or so now). My consultant has me exercising regularly, initially walking but ultimately back to running. When I first came out of hospital (early October), I could manage about 100m, now I'm up to 2.4km or so. I'm also finding that whilst I still get very tired (especially by late afternoon) it isn't as bad as a few months ago.

So far all the tests done (both in hospital and later) have failed to discover much except a heterozygous prothrombin gene fault. Other tests have come back negative (including for various cancers). However my GP wants to repeat them once I'm off warfarin, as he's worried my illness and the drug might have affected some of the results.

So my current state is: I'm alive, getting fitness back slowly, and not quite as tired as before. I'm still fed up from time to time, and my hands and feet get quite cold (especially in the current cold snap).

Back to top Go down

Posts : 3
Join date : 2012-01-31
Location : United Kingdom

PostSubject: Re: My DVT + PE story   Mon Mar 26, 2012 12:18 pm

As a follow up, I am now up to about 4Km walks - which is nice as it means I can get out in to the local countryside, rather than just buildings. Running still seems to be beyond me - I just about managed 100m a few weeks ago.

I still get cold hands - my GP commented that he hears this from a lot of patients taking warfarin.

The big change is that at the end of this month I am due to stop the warfarin, so that I can then have various tests in late April before seeing my consultant.
Back to top Go down

Posts : 3
Join date : 2012-01-31
Location : United Kingdom

PostSubject: Re: My DVT + PE story   Tue Sep 04, 2012 2:58 pm

Another 6 months, and I've been off warfarin since the end of march. I've had tests done for pretty much everything, and the result is I'm heterozygous for the G20210a mutation, and I have a high factor VIII level (over 200, 209-229).

So, the doctors want me to go back on warfarin, but I'm not entirely happy about this. On the other hand, I don't want to spend another few weeks in hospital anytime. So I'm confused about what to do.
Back to top Go down

Posts : 904
Join date : 2007-12-09
Age : 58
Location : Near Ottawa, Ontario Canada.

PostSubject: Re: My DVT + PE story   Tue Sep 04, 2012 7:19 pm

Ok, #2 anticoagulant pill today downed with a glass of water.
To answer your dilema...
I can only tell you what happened to me when I stopped using anticoagulants 2 years after my first clot,

I got another one, yes, another clot in my other leg, now I'm a lifer on anticoags.
In the end, yes the choice is yours,
NOBODY can tell you "YOU should do this or that".

Warfarin is not the only anticoag available on the market, if that is the problem, talk with your Dr. about other alternatives, but let me warn you, the other alternatives are much more expensive and they are new drugs still some quirks that need to be ironed out...
But yes, get some time with your Dr. and discuss this.

That, is what I would do... scratch
Back to top Go down
Sponsored content

PostSubject: Re: My DVT + PE story   

Back to top Go down
My DVT + PE story
Back to top 
Page 1 of 1

Permissions in this forum:You cannot reply to topics in this forum
Life DOES go on after DVT :: Why does this forum exist??? :: The Lounge...-
Jump to: