She Soldiers On
5 March 1999
Dear Fellow Sufferers!
My wife has been struggling to get support from other AVM sufferers' and there seems to be nobody here in the UK knows of a support group. I recently went "On-line" and was able to get some information from others, albeit, mostly from the USA. What follows is our family's story so far.
In 1993 my wife, Anne, and our four children, Philip, Naomi, Neil, and David and myself were living happily in London when on "Good Friday" Anne fell down the stairs and was taken to hospital, being discharged a few hours later — very weak and had to rest quite a bit. A few days later she was rushed to hospital and again, was discharged — the suggestion was that Anne was simply over anxious and had hyperventilated.
Over the next few weeks he Doctor suggested that she had "M.E." She spent most of her time in bed and was constantly tired. With four young children to look after, I resigned from work and we moved out of London to the country where, we hoped the more leisurely pace of life might help Anne's recovery. Indeed by the summer of 1994 Anne seemed to be a little better, but still needed an afternoon sleep to get through the day.
By June 1995 we both thought that Anne was sufficiently well enough to allow me to take on a part-time job - in Bathgate Scotland. The following July we were visiting a friend when Anne said that she had to go home, as she wasn't feeling too good. Two minutes later in the car she was bent over double and vomiting. I immediately took her to the doctors who in turn sent us to the local hospital 5 miles away.
Anne was admitted and later that night she was transferred to the Western General Hospital by ambulance as an emergency with a suspected haemorrhage — flashing lights and great speed! I arrived at the hospital some time later, having had to arrange a "baby-sitter" for our four children. At 1.30am the consultant told me "Mr Drysdale, your wife is very ill. She has had a major haemorrhage and we do not know if she will make it through and if she does what damage will have been done!"
I drove home (25 miles) in a daze! In the morning I gathered the four children (who had been in the car when Anne was first sick) and talked things over with them, then we prayed to God asking Him to take care of mum. The next four weeks were horrendous. Anne was unconscious for three days and had tubes attached to various parts of her body. She looked terrible and I decided that it would be better if the children didn't see mum like this. I told many friends who in turn told others and soon we were receiving many promises of prayers from all around the world!
Anne made a slow recovery and it became clear that she was stabilising. I took the children in after about three weeks, but Anne still had slurred speech, couldn't walk, had constant headaches and her vision was affected. Our daughter, then 9 was distressed and blamed herself — she had had a row with her mother the morning of the haemorrhage and subsequently has had to have professional counseling. Philip (then 11) kept his thoughts to himself as did Neil (7) but David (5) simply burst into tears and sobbed uncontrollably.
In October 1995 Anne underwent an angiogram where it was discovered that she was continuing to bleed and the likelihood was that this bleeding was what had caused the mystery illness back in '93. The AVM was between the breathing and balance centres at the stem of the brain at the back of her head.
Invasive surgery was out of question because of the likely damage that would ensue. Therefore it was decided to try to "glue" the leak and we hoped that this would be successful. Anne was treated and the results were not very encouraging, indeed she seemed much worse, indeed she was transferred to a head injury rehabilitation unit. After four weeks there she returned home to scenes of great joy from the children, however, she was still far from well.
Anne was a battler and she slowly improved and reached a degree of mobility and was able to get about the house reasonably well with the various aids that were installed. It meant that the family's lifestyle had to radically change, but we were pleased to have her home again. We moved home again from a town to a rural village, here in Sanquhar (population 2,000) and a new beginning for the family. All seemed to be going reasonably well until Anne had another Angiogram in October '97 when this revealed that the gluing hadn't been successful and that she was now having more "minor" bleeds. We were offered "Radio-Surgery" relatively new to the UK but something that had proven quite successful in the States.
So after several preparatory visits to the Western in Edinburgh (90 miles away) Anne had the treatment on Valentines Day 1998. We were surprised that she was able to come home just two days after the treatment and all seemed fine. Alas, things were to get worse over the ensuing months. Just after Christmas '98, Anne's eyesight went all haywire, seeing double and then triple before loosing her sight completely in one eye. Much prayer was offered and thankfully her sight returned in that eye, however, it was still seeing double. A visit to the opticians revealed that each eye was working fine, but together the wee next to useless. So it was that Anne began to stick a hanky behind one side of her glasses – quite funny - even Anne could laugh at how ridiculous it looked, but since she was and still is an avid book reader, she suffers the inconvenience of swapping the hanky over every ten minutes!
On the 10th of Feb '99 Anne had an MRI Scan and was told by a consultant "what do you expect after a major Brain haemorrhage? Just be thankful you're alive!" Anne was not happy about this and it seems as if the radio surgery has begun to take affect and it is not very positive at this stage. Indeed Anne told me that if she knew then what she knows now, she simply wouldn't have had the treatment! Her "Quality of Life" is much worse and yet she soldiers on and is mentally very bright and alert — keeping me in my place!
As if all that wasn't enough to contend with, all of our children have been ill in varying degrees, which has added further strain to the family. Philip has an eating disorder and now aged 14 is smaller than his 10-year-old brother and smallest by far in his year at school. This is ongoing. Naomi, now 12 has had problems with incontinence over the last 5 years, although this is now almost resolved, however, still has a few psychological problems. Neil (10) has a specific learning difficulty and needs a lot of support as he has short-term memory loss, no sense of danger and follows the crowd! David, most recently became ill the day before Anne went in for her angiogram on the 10th of Feb with what we now know to be "Irritable Hip Syndrome" which may lead to "Perthes." It means that dad has to carry him around as he has to have as much rest as possible — no sports, running or jumping, etc. Some hope with an active 8 year–old kid!
So as you can see, the Drysdales have been through quite a lot over the years. We remain optimistic and hopeful of better things to come. We pray often and trust in Jesus to sustain us through our difficulties. If we can help in any way — then we are happy to do so over the Internet.
God bless you and yours.
Update 31 May 1999
Life continues to be frantic, the kids have stabilised in their heath, and David's Irritable Hip Syndrome is much better with only the occasional short-lived periods of pain. He has just had his 9th birthday! (on 22nd May.) Naomi is doing well at present and is much happier with herself and her health.
Neil has been to London (400 miles away) to see a specialist and to have tests to assess the level of support he will need for his secondary schooling (ages 11-17).
Philip continues not to eat, although it is now being suggested that he has blood tests and an M.R.I. scan (4th June) in Edinburgh - the same hospital where Anne has been going (about 70 miles away).
I continue to keep well and very busy in my Church work and with a youth project that I am setting up - a drop in and an Information Technology room for teenagers. With three computers and a Play-station to keep the kids amused! We shall have a WEB page up and running in July under STOP OFF - the name of the project - Sanquhar's Technological Open Project Of Family Fun! We had great fun dreaming that title up!
Of course you will really want to know about Anne. Well good news here too. Things have improved, she has stopped using her walking stick outdoors, manages reasonably well in the house and is even doing some household chores! Of course, she is not well really and still has some problems, particularly with her balance - she fell in the kitchen last week, thankfully, all she hurt was her pride! Her eyesight seems to be improving slowly as has her headaches. She is still nauseous when travelling which making it difficult to go shopping (Nearest supermarket is 15 miles away!) and longer trips are an ordeal for her. However, she is much improved and feels much better at present. Her consultant thinks that the Radio-Surgery last year is now beginning to kick in and that with the "side affects" will come more stable health - probably in about another years time! She is to have another angiogram in February 2000.
We continue to look to God for His support and healing and are extremely thankful to our many new friends (mostly from over the ocean!) that have contacted us since joining this wonderful support group. We would thank you all for the support and prayers you have offered since our story was first posted.
Finally, we are planning a real holiday (vacation?) for five weeks in the summer - the wonderful provision of the Lord through His people. So we will be away and "off line" again from 1st July to the 15 August!
We do remember the many friends we have in prayer and are happy to pray specifically for you if you e-mail me at "firstname.lastname@example.org" May God be with sufferers and their partners, parents and their families and richly bless you all! Keep looking upwards and onwards - there is hope in Jesus!
Update 4 Feb 2000
Anne's Angiogram has been delayed until the first of march. This is rather disappointing as she had just about got into the right frame of mind about it. She continues to have loads of headaches, vision and balance problems, but "She Soldiers On"! We would value your continued prayers.
Update 2 Mar 2000
Anne had another angiogram today. Preliminary results and feedback seem to suggest that the AVM is gone! WOW! Now that is an answer to prayer! We now have to get the low down on Anne's long term prospects concerning her vision, balance, breathing and headache problems, but hey this is good news! Rejoice with us, give thanks and praise to God and although it has been a long road for us, never give up the fight! Finally, many thanks to all our friends who have prayed so hard and so often over many years - you will never know how much we appreciated your input! Keep on looking up!
Update 4 Jun 2000
This past week has seen our family go away for a weekend break only to return with our eldest son Phil being admitted to hospital - he has been ill off and on for the last 2+ years - lots of sickness and frequent visits to the toilet!! Also he has lost 3 kilos in weight and half an inch in height in the past 2 months - all very worrying.
I had wondered if it was bowel cancer - however, the good news (?) is that he has been diagnosed as having Crohn's Disease. He is back home and will return to hospital on the 13th June for 3 days to start a liquid food diet that will last for a month and possibly even longer! We do appreciate the love and concern of the "family" and thank you for your prayers and e-mails - they meant more than you could imagine!
Anyway, I need to get the kids off to bed so I will close for now.
Update 16 Sep 2000
Time I shared our news. Much has happened, but first of all let me say that Anne's news continues to be good! Things have stabilised and she does very well. She gets out on a regular basis and is used to walking with the aid of a stick. Obviously her balance and vision are not great, but she doesn't let it stop her from doing most things! It would seem that where she is, is where she will be staying, but we remain grateful to God for all that he has brought us through.
Our main concerns at present are our children - Philip passed out and fell down the stairs resulting in 4 days in hospital. He is still on his special diet but isn't putting on the weight like he should. David is going into the same hospital as Philip to have the tests Philip had as they think he too may have Crohn's Disease! Neil has started at Secondary School and we continue to fight to get him support for his learning difficulty. Naomi is 13 - going on 23: "everyone hates me" and "I hate everyone" - oh the joys!
As for me, well apart from gaining weight around the waist and loosing hair from my head, I am fine and very busy.
Do feel free to get in touch - we so enjoy hearing from the many friends from this support group. You have been such a blessing to us and it has been a privilege to share and pray for you. It has kept me sane during a very trying and difficult phase in our families life. Thank you all!
Update: 9 Feb 2003
Well after a long absence from updating my friends on this wonderful website I have to start by telling you all that the family has moved (July 2001) up to Aberdeen where Howard took up the post of Port Chaplain for the British & International Sailors Society and we all love it up here. Howard loves the work, his first full-time since 1993!
I finished off my last update by saying that our children were our main concern. Thankfully Phil has now got his Crohn's under control and has started at university doing a degree in Robotics and Artificial Intelligence which he is enjoying. Naomi has left school to do a course that will lead to becoming a vet's nurse and if she wants could become a vet herself. Neil has settled well into his new school and getting plenty of support. Only David has difficulties with his health. He has a taxi to and from school; a rest period during the school day and unfortunately even then misses too much school due to his ongoing fatigue and pain. We pray for the consultant to find the correct treatment that would ease his pains and fatigue.
Anne continues to do well and is battling on as ever. People are amazed when they hear her story. I too wonder how she remains so positive. Her faith is a great example to me. However, her eyesight has continued to be a problem and was offered some treatment to help so she goes into hospital on Monday with the operation on the Tuesday (11th Feb) and if all goes well home on the Wednesday. The down side is that she WILL loose her eyesight for at least 2 weeks, possibly up to 6 months! We are optimistic and are asking God for a positive outcome to this operation that will help her to see better.
Do join us in prayer and I will try to update you later on in the week. We trust that you all are continuing to improve and coping well with all that life sends you.
Update: 10 Mar 2004
So I finished promising to update you in a week's time - now more than a year on (blushing) I am bashing the keyboards!
Firstly let me say that Anne's operation went really well - no blindness - just blurred vision and our Church had rallied round to provide cooked meals for the six of us every night for 3 weeks! The Ladies Hospitality Group were much appreciated.
A year on, Anne's vision is much better and she is back wearing contact lenses again. All has not been plain sailing and just before Christmas '03 she spent two separate weeks in hospital with suspected appendicitis! No operation, but rather suspected Crohn's was the verdict. Today she had further tests to discover what is causing her to have so much pain. Results in 2-3 weeks time!
The children have grown significantly since I posted the original picture and Phil (19) and Neil (15) are both taller than me!
Phil is continuing at University. He has made several internet sites which earn him money!! He also does the Power Point Presentations and PA in the Church as well as being a youth leader.
Naomi (17) is no longer a little girl! She continues to study animal welfare and enjoys the course that she studies. She was baptised last year and is active in the church youth group.
Neil was baptised last Sunday and is in his final year at school. He hopes to go to college next year to study and hopes to become a chef!
David will be 14 in May and is keeping much better although he still needs a taxi to and from school. He also was baptised last year and we feel really thankful that God has so blessed us as a family - despite the difficulties we have experienced.
I continue to be busy at work and I am really enjoying it. I have set up my own web site so you can get an idea of the sort of things I get up to! Church also keeps me busy and again I do enjoy this.
So that is about all the significant events other than to close and say that Anne and I celebrated 20 years together. What a wonderful gift Anne is to me.
I thank you all for your support and the encouragement given to us. Be assured that although my work commitments do not allow me to spend as much time on the internet than I used to 4 years ago, I do remember you all in my prayers.
Yours, because His,
Howard and Anne
Update: 27 June 2005
After a long gap, I thought that I should bring you all up to date with our latest news.
I continue to work as the Port Chaplain in Aberdeen harbour which I find it really great fun! (Have a look at my web site if you want more details: British and International Sailors' Society)
The children are all growing up all too fast! Philip our eldest has moved out and into his own flat! Naomi has completed her Diploma in Animal Welfare. Neil starts his second year at college training to be a chef. David is still at school and is keeping much better. In fact they all are!!
Anne is doing fine although she has issues with rheumatic pains, but there are no signs of any recurrence of the AVM. Her general health is rather up and down due to her immune system being less than what it should be, yet she never complains and just gets on with her life!
So we continue to be grateful to God for bringing us through some tough times and into a period of great joy and happiness!
My thoughts and prayers are with those who continue to struggle with a less happy outcome that they may be comforted in their times of distress.
Discussion, comments, or questions: Rev Howard Drysdale
© Copyright 1999 Rev Howard