Gordon shares his reflections on a life lived with long-term anticoagulation!
Greetings to everyone. I joined the Thrombosis UK Closed Facebook group a number of years ago and am one of the older members (now 84). I joined, having heard a gentleman being interviewed on the radio, having just been prescribed Warfarin for life. He sounded to say the very least, apprehensive and I felt then that I could perhaps contribute in the group from time to time based on my experience. From time to time I read posts of younger people placed on lifetime anti-coagulation, and I hope that by writing my story I can offer some reassurance which is my whole objective. First of all my apologies for the length of this post but believe it or not it is a precis of a much longer version-perhaps I should write a book!. Two caveats (1) my experience is with DVT I have no knowledge of PE. (2) Please do not take this as any suggestion that you follow the path I took we are all different and our bodies react in different ways my primary objective is to demonstrate that lifetime anti-coagulation is not the end of the world and can be managed.
My first DVT was in 1959 (I was 18 and had been in work for a year) it was unprovoked. No CT scans, MRI or D Dimers in those days. I became something of a mystery and a challenge to the specialists I encountered, to suffer this condition at such a young age. For the next four years, I had frequent stays in the hospital, the first nine weeks, the longest 13 weeks. Various tests were carried out, including a venogram, an arteriogram, a liver biopsy, a bone marrow biopsy, and a biopsy of the deep vein in my left leg, where I still carry the scar. Although my condition was acknowledged, it did appear to me that consultants were looking to establish the name of a disease which caused the DVT, and this was not to be found.
During this period, I gave up my place on the waiting list for a bed in St Mary’s Paddington under a professor there after he assured me that the blockage was confined to one leg with little likelihood of one appearing elsewhere.
My condition had improved, and I returned to work after a six-month layoff before a clot arose in my right leg. I did not inform St Mary’s. It may be of interest to know that after the first one, I experienced what you now describe as PTS. Extreme pain, only relieved by raising the leg to somewhere around head level. I took no painkillers.
My final discharge from hospital was in February 1963, and placed on warfarin for life. My consultant also advised me to give up smoking and his reasoning was so compelling that I gave away some 200 cigarettes to Nurses and have not touched one since that conversation ended.
There were a number of events in this period which I should mention which had a major effect on my life.
- During my first hospital stay I read a newspaper article about a young man around my age who had my symptoms and who unfortunately had died. This coupled with reaction from my family on visits, Mum in tears etc only served to fuel my fears of an early demise. In those days doctors were prepared to say far more to relatives than to patients.
I became depressed or in modern parlance had mental issues. I was still in hospital and received tremendous help from a junior doctor. We talked at length sometimes through the night when he was on duty and not called.
By the time of my discharge all of those fears had left me and I faced life appreciating what I had and acknowledging the wonders that surround us. I still do.
- I was employed by a Bank who were very understanding of my situation relocating me to allow me to live at home and work at a local branch and reducing working hours to allow me to cope. For my part I needed to demonstrate that my DVT’s should not be a threat to them, and I should be offered the same chances of promotion as my Peers. Thankfully, I prevailed.
- In 1961, a young lady in a school uniform called in at the Bank where I was working to be interviewed for a job. I took her name to a manager with the comment, ‘Please take this one on.’ In October 1962, following what I thought was her 18th birthday (it was in fact 17) I asked
her out for the first time. We were married in 1966. Our daughter was born in 1968 and our son in 1970.
From the outset, my health history was never an issue between Ann and me, but her love and the responsibility of children gave life a new perspective.
- Although my health had improved, mobility was still an issue from time to time, but I now knew when to stop and rest to allow pain to subside. I did try elastic stockings but the least said about them the better!
To this day I regret having to excuse myself from many of the children’s activities -squash, tennis, football etc. I was determined to show support and interest, and like my wife they were very supportive.
In 1976 I made my first attempt to walk around a golf course, which was unsuccessful.
The following year I did succeed, and I now had a sport in which I could participate. I have to confess as much as I enjoyed the game and the company, the objective was always to walk the course and my golf was never at any great standard!
I was delighted when I first played 36 holes in one day and did that several times. I still play today, but now use a buggy age-related, not health related.
I now arrive at September 1992. In the 34 years prior to this, we had lived in 6 different houses in six different locations in East Anglia. I was successful in persuading the bank that I was capable in the job and was now Senior Manager of a Branch of 40. The country was emerging from recession, and banking was moving in a different direction, which did not suit my outlook. I managed to persuade my boss that I was a suitable candidate for voluntary early retirement and ceased work in September that year.
Both children were in work, and although academically qualified for university, had decided against. I did return to work for the Bank again the following year, but this time it was in a welfare role and limited to two days each week. I continued in this satisfying and enjoyable role for 13 years.
To celebrate my retirement, Ann and I took a package trip to Bangkok, Hong Kong and Singapore, which gave us an incentive to travel. In 2016, we celebrated our Golden Wedding, and with the help of my friend Google, I calculated that I had flown over 500,000 miles without a stocking or flight sock in sight!
We shared an interest in nature and sights created naturally and some unnaturally, but always by forces outside our control. Cities held no great interest apart from the occasional Christmas Market. I would add here that for 25 consecutive years, I flew to Portugal with three others to play golf. Needless to say, it was necessary to allow a couple of weeks after return before the next INR test, which had usually returned to within parameters by that time.
That in brief, is my story. COVID curtailed our travel, which is now contained to the UK (we do live in a beautiful country). Both children own a successful business and each has two boys the youngest in his first year at Uni, the other three having completed their degrees.
Ann and I look forward to the whole family getting together to celebrate our Diamond Wedding next March. I hope if you have read so far that you don’t consider this just a complacent story to demonstrate how lucky I have been. Of course, there were downsides, but these were overcome, and health was never the be-all and end-all of our lives. I set myself a target after my first child was born to work a full year without a day off through illness. Missed out by two days when I contracted German Measles. I think I am safe in saying that I have had no more than two illness-related weeks away in the next 23 years.
I am still taking Warfarin, which thankfully is stable. Over the years, the method of taking a blood sample has changed. It was at one time a finger prick, suck a small amount of blood into a pipette, dump this into a test tube containing a liquid, start a stopwatch and wait for the sample to coagulate. Stop the watch and consult a table and voila, your INR!
For many years now, in the words of the late great Tony Handcock, it is an armful, off to hospital and the result posted in a couple of days. I must admit to some surprise recently when the dose was stated to be 4.71 mg daily. I related this to a friend, and when asked how I obtained this, I replied that I nipped a piece out of a 5mg tablet. Unfortunately, she believed me!!!!
So what are my conclusions after 60 years on the drug?
- Embrace it, it is your friend.
- Live your life as you wish, beware of restrictions which affect you, but here I must be careful because some of you are taking a drug which is not monitored.
- Listen to your body, it is a great healer. Stop when pain is unbearable, but try to push further next time; it will improve as other veins enlarge to take over the role of the one which is blocked.
- Look for the good things around you and retain a sense of humour. If you do not possess the latter, acquire one quickly!
Finally I want to relate a true story very important to me, as it demonstrates so well the power of the mind.
A few months after my second DVT I developed a pain in my right elbow which gradually became worse. I still clearly remember a Friday morning, asking my mother to tie my tie ready for work because movement was so restricted. I can still see her now, completing this with tears streaming down her face, we both thought another DVT.
Saturday, the pain kept me awake all night, and I took myself to A&E the following morning.
I now want to assure you that although I drove myself, this throbbing in my elbow did not let up.
The duty doctor said they would take an X-ray, and I could not be bothered to tell him that a clot would not show up. As I suspected, the X-ray was clear, but then he pointed out that my elbow was severely bruised. I looked down, saw nothing, and he said, ‘Try looking on the inside’, which was black and blue.
I knew instantly then that I had caused the problem when opening the driver’s door of my car, which did stick somewhat, and I developed the habit of banging this with my elbow. The anti-coagulant did the rest!
Why am I telling you this story? As I left the hospital arm in a sling, I took it off to drive home, and the pain had completely disappeared. The Power of the Mind!
If you have reached this stage, thank you for sharing my story. Life does not end with lifetime anti-coagulation for me, it started.
Thank you
Gordon.