David Glaser's story

   
Date
Diary

Introduction

Do remember that this is an exceptional and unusual form of immunotherapy - for most people it is done without any major precautions other than being near the hospital emergency room. My previous response to immunotherapy required a lot more caution and care.

The treatment is basically the same each time.

I arrive at the hospital intensive care unit (ICU) at 7.30 am and after changing I am put onto a drip and wired up to machines that measure blood pressure, heart rate, blood gases and am then ready for an injection of venom at 8.00 am. There is lots more equipment around for intubation, breathing, emergency syringes, nebulisers - you name it and it is there!

There are a number of people very close to hand - the consultant anaesthetist, the consultant immunologist, and a number of intensive care nurses who have different roles in the event that full life support is required. It is very reassuring but rather strange having so many people so worried about my health!

There is also me and my wife Penny whose presence is more important to me than anyone! Following the 8.00 am injection it is then a waiting game. Various measurements are made every few minutes and accurately recorded - the nursing is "one to one" which is intensive for them and strange for me too. I have never been so closely scrutinised for so long.

If nothing happens then I leave the next day.

Week 1

12 Feb 2003

1/5,000,000th

of a sting

I am pleased to report that all went really well and smoothly. I started with a dose equivalent to 1/5,000,000 th of a wasp sting or 0.00000002 of a gram of wasp venom and - I had no allergic reaction. The staff in the ICU were brilliant and helped me get through the all the fears and worries in one piece. It was a big psychological victory and I am looking forward to next week's injection!

Week 2

19th Feb 2003

1/500,000

Yet another successful stay in intensive care with a small dose of venom equivalent to 1/500,000 of a wasp sting - I had no allergic reaction to the venom. Whilst success so far is great news I am still at a dose of venom equal to 1/100th of the dosage that people normally start their immunotherapy - so at the moment whilst progress is fine the path ahead continues to be daunting but achievable.

 

Week 3

26th Feb 2003

1/100,000

of a sting

A five-fold increase in the dose of wasp venom to 1/100,000 th of a wasp sting went fine - no allergic reaction, just a headache and general feeling of tiredness. I am now getting into the rhythm of being in intensive care - it is amazing how quickly one adapts to this strange way of life. I claim to be the only patient in the intensive care unit's history who arrives and leaves in a vertical position and under his own steam!

Let's hope that this record is maintained in the coming weeks and months.

 

Week 4

5 March 2003

1/50.000

of a sting

This week was a dose of 1/50,000 of a wasp sting which is 10 times weaker than the normal starting dose for immunotherapy and once again, other than the flu-like symptoms, there was no obvious reaction. This is going well and I can only be hugely encouraged that there is some light at the end of this tunnel. The intensive care staff are very professional but also great fun - they gave me a signed card for my birthday and intensive care must be the strangest and most memorable place in the world to have a birthday.

Give me the Seychelles, Mauritius or Barbados next year!

Week 5

12 March 2003

1/25,000

of a sting

Some weeks treatments are better than others and this week was hard work. Not only did I feel rough after the injection (1/25,000 of a wasp sting) but I also for the first time started to question myself - was it the stress of the situation that was making me feel rough or the venom injection? Either way we have agreed that provided I am feeling sort of OK and stay within site of the intensive care unit I will come off the monitors during the afternoon and be free to move about. That will hopefully make me feel a bit happier about my situation and more cheerful about things.

Very sadly, my neighbouring patient, a delightful gentlemen whom I had got to know quite well over the last few weeks, died during my stay this week. I suppose that for an otherwise reasonably fit chap like me, it is no surprise that get these occasional "moments" of gloom.

Back at home I am nevertheless still looking forward to next week and controlling my allergy one day.

 

Week 6

19 March 2003

1/12,500

of a sting

This was an altogether happier week when I moved around and was not wired up all the time to the monitor - this was great and gave me the independence and freedom that had got to me last week. Its not much fun asking to be unplugged every time you want to visit the men's room! The higher dose of venom (1/12,500th of a wasp sting) had the same sorts of effect as last week: a sore head and general tiredness. I can put up with that provided control of the allergy is getting nearer which I am beginning to believe it is!

I am going to attend the funeral of the charming gentleman who died last week in the neighbouring bed. He was one of the "good guys" and I guess he would have done the same for me. A true gent and it was a privilege to attend his funeral.

Next week is worrying because the venom dose is very nearly the equivalent of what nearly killed me last year - whilst I am no coward, I am also no hero. It will be a challenging day!

 

Week 7

26 March 2003

1/6,250

of a sting

Well - we must be making progress because I had no violent reaction to the venom injection like the one experienced 15 months ago at very nearly the same dose of venom (1/6,250th of a wasp sting). Just the headaches and flu like symptoms again.

I have got to know the nurses so well in ITU - they are a brilliant team and they lift my spirits during my tough hours with them. It is also nice when I can do the same and meet some of the other patients who are going through the trauma of intensive care - I was able to meet two this week and hopefully cheered them up and reassured them that they would get through their particular problems. I shall look those patients up again next week when hopefully they will be in the "normal" part of the hospital. Very therapeutic!

I am a patient in ICU but am not "ill" and sometimes cannot help but wonder what I am doing there. This week I saw my first wasp in the garden this year (23rd March) and remembered just how important it is that I sort my allergy out and how potentially dangerous both the treatment or a live wasp sting would be for me.

I have no choice but to proceed onward to Week 8.

 

Week 8

2nd April 2003

1/1,250

of a sting

The dose this week was equivalent 1/1,250 of a wasp sting - a five fold increase on last week and - no nasty reaction just the normal one I have become accustomed to of a major headache and general feeling of tiredness. Not very different to a hangover, I suppose. I was pleased to visit my hospital friends from last week and I found they were successfully over their operations and going home shortly - great!

I must admit that this week's treatment was a positive experience and I have now set in my own mind the possibility of going to watch the tennis at Wimbledon in July. It may be a fantasy but it is a target well worth pursuing - I will probably end up watching it on the TV but we have nevertheless got the tickets for my wife and I to use in around 10 weeks time.

I have so much support from my friends, website visitors, the Intensive Care Unit, the doctors, the nurses - I feel that if I don't succeed in this treatment that I will be letting lots of people down.

This responsibility is a heavy burden and I am now really motivated to get myself sorted out.

Week 9

9nd April 2003

of a sting

1/625

A dose which was twice as much as last week - success yet again! Other than the headaches and tiredness after the dose, all went well - my confidence is increasing by the week.

I have been doing some mathematics and it seems to me that if the dose doubles each week then in about ten weeks time I shall be at the target level. However, one adverse reaction and the treatment either stops altogether or we have to go back to a smaller venom dose - either way, I would not make Wimbledon fortnight. We have a careful balance of being prudent about the dosage and me wishing to get to Wimbledon. Too large a dose and I could have anaphylaxis, too little a dose and I miss Wimbledon. It is a good thing I am not the prescribing physician!

We had a great week at home - I completed my pond project in the garden of putting in a little waterfall and hopefully that will attract the frogs and toads. Penny, my wife, was standing sentry duty by my side watching out for flying objects and she killed three before they found me - our garden is now almost becoming too dangerous for me to enjoy - as the weather warms the wasps come out to play and I have to stay indoors.

I could not help but smile on waking up in the Intensive Care Unit this morning and seeing .....snow falling outside. This is rare in southern England in April - but I feel that the somehow I am currently on a roll. - a few more days in the garden....!

Week 10

16th April 2003

1/100th

of a sting

Another milestone has been reached! If one wasp sting is the equivalent scale of a year (so half a wasp sting gets you to June 30th, quarter wasp sting to 31st March etc) then as of week 10 I have finally moved off January 1 and am now on January 3! This is progress and whilst there is still a way to go - well I cannot help but feel optimistic that things are going to be OK.

That being said, the headache and particularly the tiredness seems to be getting worse after each dose - I seem to spend most of my time in hospital asleep at the moment. Its strange, I walk in feeling fine and wide awake and then bang, I feel like I have been on a wild night out - of course wild nights out are all memories nowdays (!) but it is the same sort of awful aching head.

The nurses in the intensive care unit keep my spirits up - they really are a wonderful bunch and I will definitely miss them all when my treatment is over. Lots of different people from all over the world who all share a common quality of caring for people in their charge with great sensitivity and humour. I feel very lucky to have found such a great team to share my adventure with.

I am now really looking forward to the Easter Holiday weekend and my treatment next week. Happy Easter!!!

 

Week 11

26th April 2003

1/50th

of a sting

 

For the sharp eyed my treatment this week was held on a Saturday not the usual Wednesday - the intensive care consultant's flight back from his Easter holiday was delayed due to the SARS problem in the far East.

In any event the treatment went well and this week was the equivalent of 1/50th of a sting or 1 microgram of wasp venom. For the non-scientific a microgram is 1 millionth of a gram - a full wasp sting contains 50 micrograms of venom - so whilst the dose is still small in size we are definitely moving nearer our destination. We have now worked out the plans for the future and it would appear that we have around 9 weeks of treatment left (if all goes according to plan) and so I should just about make Wimbledon after all!

This week I just had the usual hangover after the venom injection which stayed with me all day Saturday and into Sunday - a small price to pay for the freedom that the treatment will give me very shortly.

We just have to stick with it and I am looking forward to next week when the venom dose more than doubles!

 

Week 12

30th April 2003

1/10th

of a sting

Another successful hospital stay with the biggest jump in the vemon dose yet and no anaphylaxis - we seem to be on a roll here, and whilst the doses are increasing at aggressive rates it seems my body is coping with them all just fine.

Intensive care is an amazing place. An elderly lady who has been there for many weeks and required continuous ventilation during her stay had, I must be honest, been written off by me. Not only did I think she would not make it, but I was privately wondering whether just keeping her going was worth the cost and the suffering it was apparently causing her. Well, I walked in this week and there she was sitting up, conscious, looking quite chirpy and breathing for parts of the day without assistance. I even had a chat with her for the first time! I feel quite ashamed of my judgement and have learned just how naive I am about the tenacity of the human spirit and the skill of the medical profession. Still it was great news and has pleased me no end. I am looking forward to watching her progress over the weeks ahead.

So, I have a definite feeling of bouyancy at the moment - though can only be cautious about the future since I understand that the probability of a bad reaction starts to increase from now on for just normally allergic people. There is no reason to panic but also no reason to celebrate just yet - despite the fluttering in my stomach that indicates we are winning the battle!

 

Week 13

7th May 2003

1/5th

of a sting

We walked into hospital this week and realised that we were famous - the hospital quarterly newsletter had included an article about me, the allergy and the treatment and we were feted as celebrities - our picture was also included so there is now no escape!

The treatment went fine though with one big difference - the injection hurt for the first time just like a wasp sting. Instead of being just the usual small scratch, it was a small scratch and then a continuous stinging for a few hours afterwards. We must be getting near our destination so it is all hugely encouraging. However, it did hurt and in view of the fact that treatment requires me to go to a 2 sting dose of venom, I guess it'll hurt even more as each week moves forward. It will be just like deliberately placing a wasp on your arm and asking it to sting you not once, but twice. Ouch!!

Who cares - fact is that this whole course of treatment looks like it is beginning to have an end after all and whilst there are still seven weeks of immunotherapy left, which I am not look forward to, the prize at the end is having my life back.

Definitely worth all the stings on the way.

By the way, my elderly lady continues to make good progress but she is still on the ventilator and so can't talk back. I joked with her that it was probably the first time in her life that she hadn't been able to get the last word in - and she laughed back at me, and stuck up her thumb which indicated that I was dead right!

 

Week 14

14th May 2003

2/5th

of a sting

This week went well - in fact the best week yet with hardly no headache and just a stinging arm. I took some of the Pyrethrum spray from our on-line shop and it worked really well. Truly practicing what I preach!

I will admit to being tired of it all at the moment. I just want to get to the end of the treatment sooner rather than later and get back to a sensible life again. It is hard work sharing accomodation with the very ill and this week was no exception. In addition to a full complement of patients with alarms going off and more hustle and bustle than usual, my elderly lady was deemed fit enough to be taken off the ventilator and the result was that she had to be put back on it again since she had very serious breathing difficulties. Does this mean she will be condemned to be tied to a ventilator for the rest of her life? I don't know, but all I know is that the whole situation makes me feel very sad for her and the situation she and the doctors are now situated in. Don't get me wrong, an intensive care unit is an extraordinary place and the people that work it are wonderful - genuine heroes! But it is amazingly hard work for someone who is fully conscious and completely fit to be a patient. I am not ill but just have a condition - it is sometimes hard for me and the unit to remember that.

On a happier note, the charming widow of the gentleman whose funeral I attended in the middle of March came to visit. She was very touched that I came to the funeral and I was equally touched that she came to visit me and the unit. It was brave of her to come back and we were all very happy to see her again.

 

Week 15

21st May 2003

3/5th

of a sting

What you expect never seems to happen - this week was physically trying and hard work with the sting hurting more, my head clanging, and general feeling of being shattered. Once again like a hangover with no party beforehand!

But, once again it is another week behind us, and one in which we were able to celebrate my wife's birthday with a cake in the intensive care unit. No candles to blow out because of the dangers of all that oxygen though! The elderly lady opposite me seems to be getting better after all the traumas of last week but the issue still remains as to how to wean her off all this life saving equipment so that she can live a sensible life again.

As for me, the major good news is that there was no anaphylaxis which means that I am well on the way to being cured which is fantastic. The website is getting very busy again and the e-mails are increasing daily which is great. My business is very busy and so there is little time to do anything when I am not in hospital but catch up with all the work.

All is going well so it is odd that I can't help feeling fed up and "cranky" at the moment. Perhaps it is the thought of next week's injection which makes me feel negative at the moment and the fact that I feel more and more tired. We British are meant to have a stiff upper lip but sometimes even the stiffest lip has the odd tremble.

On to next week when I hope I shall be a bit more positive!

 

Week 16

28th May 2003

4/5

of a sting

What a difference a week makes - it was a very positive week with a very modest reaction to the increased dose of venom and generally a very comfortable stay. I came home feeling relaxed and very ready for the fray! It was particularly great to see my elderly lady walking around the unit without the ventilator - perhaps she is feeling more positive too and I am just catching her vibes!

The weather has turned lovely again and I have suddenly realised that I have got my life back again because next week I will be taking a full wasp sting worth of venom which means that if I get stung in the field then I should not have any problems. However the target dose is two wasp stings worth of venom - wasps can sting twice and there are some pretty big queens out there so it is better to be safe than sorry!

The first day of Wimbledon is looking far less of a problem and it should be on Monday 23rd June 2003 on No 1 Court - I know there are a few weeks to go but I can't help but feel positive about the whole situation at the moment.

If all goes well my final immunotherapy treatment will be on Friday 27th June 2003.

 

Week 17

4th June 2003

1 wasp sting!

We have finally made it - after 17 weeks of hospital visits, frayed nerves, headaches and tears, we have finally reached the landmark of one wasp sting only to remind ourselves that the conclusion of the treatment will be in three weeks when we reach two wasp stings. But I am confident that there will be no problems getting to this landmark.

It means that I am basically cured of this condition and now able to go and do the ordinary things that ordinary people do all the time without thinking about it.

There are another three weeks of treatment and I will be keeping this diary until then, at which time I will close the diary for good - I originally set up this website as a resource for others and now I want to concentrate on that side of things rather than talking about my particular condition, which is/was very rare anyway.

Keep coming back for the next few weeks and see a picture of me at Wimbledon, an ambition that seemed almost impossible four months ago now looks as though it will be readily achieved.

I have got my life back again and I am amazingly grateful - just how do you thank the doctors, nurses, family, friends, web correspondents who have got me to where I am today?

Something to think about during next weeks treatment!

 

Week 18

11th June 2003

1.2 wasp stings!

A change to the treatment this week - instead of one injection of venom I now am given two. This is good news as these injections do sting and to have them given in two separate locations hurts a bit less! I had no reaction to the first injection at all (0.6 of a sting) though had the usual headaches after the second injection was given. I slept most of the day but all went well for another week.

The best bit of news this week was that the "elderly lady" who has been "up and down" for the last month or two is now definitely on the up and up. She is able to talk through her tracheostomy valve and she is more than a character! In fact I can see that she is a very strong personality and quite a fighter. She is doing really well and she may well make a full recovery yet.

As for me, well my work is getting busier just at the right time and when I am not in hospital most of my time is catching up with earning a living. It is a good thing that they do not allow mobile telephones in hospital or else I would be on the phone/e-mail continuously when I should be resting.

I can't believe that there are only two more weeks left!

 

Week 19

18th June 2003

1.6 wasp stings!

The penultimate week went so smoothly - two doses of venom on each arm and I went to sleep for most of the day and felt fine.

It is all turning into a great success - everyone increasingly confident each week that there will be no anaphylactic reaction and none the more confident than me. My body's reaction does seem to be changing as the weeks progress with the intense flu-like symptoms now replaced just by sleepiness. If, in future years, I can't sleep then I shall go out in the garden and get stung.

My "elderly lady" has now left the intensive care unit and is in a normal ward and seems very happy that she is going "home". However her old home is not practical for her any more and so life will have to change massively for her - her former independence will have to be sacrificed which is very difficult.

For me, I am lucky - its seems I have got my life back and I feel as elated about it now as I felt depressed about it last year. I shall be going to Wimbledon on Monday 23 June 2003, a few days before the last treatment session on Friday 27th 2003.

I will then make my last diary entry and draw a line on what has been an extraordinary period in my life.

Log in and see a picture of me celebrating at Wimbledon!!

 

Wimbledon

 

Yes - I made it to Wimbledon before my treatment which this week takes place on Saturday. For once the grey start to the day was soon replaced by beautiful sunshine - a day of great celebration for me and Penny!

Wimbledon tennis 2

 

Wimbledon tennis 1

 

Week 20

27th June 2003

2.0 wasp stings!

 

It is often said that the journey is more exciting than the arrival - and today's treatment of a wasp sting in each arm went very straightforwardly with no problems at all - in fact I got out of hospital earlier than normal because I was feeling so well!

I had arrived at my destination with a sense of anti-climax - of course I was thrilled to be there but relief was far more the order of the day than celebration!

I have finished the "step-up" programme and now start the maintenance programme of an injection every month, for how long I don't know but certainly a few years. The threat to life is comparatively tiny compared to what it has been over the last 20 weeks.

This is my last diary entry - so thank you, dear reader, for you interest in my situation and the general cause for people who have severe allergies. My fervent hope is that everyone with severe allergies will find a cure for these dreadful conditions. They are so life-limiting and soul-destroying. They generate far less concern from those who do not suffer than other illnesses but are all the same absolutely dreadful problems to have to face on a daily basis.

I have been so lucky and have so many people to thank that I will be posting a separate web page shortly. In the meantime, I now have my life back again and have to start working out what to do with it.

I just know my priorities and values have changed so much over the last 18 months that, quite literally, life will never be the same.

I consider myself very blessed to have been given my life back, and a life which has become so much the richer and finer as a result.

David Glaser, 28th June 2003

 

 

 

Insect Stings InformationSite Map | Privacy Policy | Contact Us | ©2007 Insect Stings Valid XHTML 1.0 Transitional