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A Stroke of Luck - Chapter 15 Ian Thorpe
Ian's memoir of his remarkable revovery from a massive Brain Haemorrhage is a must read for Stroke Survivors, their relatives and those who care for people whose lives have been derailed by stroke or brain injury, probably the most devastating of all health failures. In this book, free to read online or download in a printable version, somebody who has been through the process shares his experience. Honest, hilarious, often funny because as the author will tell you a sense of humour is the most important item in the survivors toolkit.
Copyright © 1997 - 2007, Ian R. Thorpe
Request to reproduce in whole or in part should be e-mailed to Greenteeth Multi Media Productions http://www.greenteeth.com/index


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CHAPTERS
Introduction
& author biog

1 - Why Not Me
2 - Hospital
3 - The Surge of Recovery
4 - Standing Around
5 - On The Move
6 - Rehabilitation
7 -In My Room
8 - Progress
9 - Home Leave
10 - All You Need Is Love
11 - Miracles Take Longer
12 - Superman
13 - All a Conn
14 - Steps
15 - Discharged
16 - The Woman Within
17 - No Surrender
18 - Going it Alone
19 - Last Chapter

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Chapter 16

The Woman Within


"What we have here is a failure to communicate"

from the film Cool Hand Luke,



16.1 "....angel of the centrefold...."

The consultant who prescribed the drug Spironolactone for my condition had warned me of side effects but other than the intended benefits, nothing appeared to be happening. The dose, four hundred milligrams per day seemed massive compared with daily doses of other drugs I had been taking so my adrenal gands must have been like The Incredible Hulk's to be overproducing so much Aldosterone. Thing went well for a while then suddenly, sometime in March, as Teri was drying me after a shower we discovered my nipples were incredibly sensitive. I donít know if any of you will remember from childhood, mothers of young children are always very vigorous with towels. The way Teri attacked my sensitive bits made me realise that women really do believe men never grow up.

"Yahrrouch ow ooh ahh ahhh, be gentle with me." I protested. Teri maintained she was rubbing no harder than usual. It felt as if she was lying. We examined my chest and for the first time noticed the hair was much finer than it used to be. Then there were the nipples. They looked as though I had been shot in the back twice and the bullets were pressing against them. It did not seem very important, after all there was little chance I would be spending much time in the changing room at the gym in future.

Over the next few weeks however a pair of boobs developed rapidly. From having pecs, with flat, male nipples tucked under the bulge of muscle and looking down, my chest had developed two slightly hammocked, fleshy protrusions with raised areolas and pink, upturned nipples. I am not exaggerating, and even though I do say it myself, they were impressively pert for a fifty year old. The boobs had certain a girlish charm but we decided they had to go. At that time appointments with the endocrinology clinic were three monthly and my next visit soon came round. The consultant was not available and I saw a female junior doctor who asked about erections, (not something I had thought about a great deal since my stroke) and spoke of the testosterone blocking effects of Spironolactone. Well that department was still fully operational though not called upon to perform as often as it had been. Boobs were not a welcome addition to my body decoration and the feminisation process made a myth of that tattoo but the doctor and I decided to see how things went. There did not seem to be many alternatives however so on the way home Teri suggested she should perhaps start showing me how to put on make - up.

Next appointment, the hospital was in chaos (greater chaos than usual) and I had a short and very unhelpful visit with a junior doctor who had the ego of an opera singer and the brain of an opera hat. "Donít be ridiculous" he said, "men donít get breasts. I recalled something similar being said about the prospects of recovery.

"Spironolactone is an excellent drug and you must not stop taking it. The side effects are not seriouys" he commanded.

I think he was hoping for a flash. Well no way. I might have been turning into a girlie but I was no slapper and was only going to get them out for five grand and a guaranteed centrefold feature.

Another three months passed and my journey from Wonderboy to Wonderbra was three parts done. I had cleavage. Honestly I did! There were about three hairs left on a chest that not so long ago any medallion man would have died for and trousers that had been a good fit were loose around the waist and tight on the hips. (And Iím telling you girls, I only had to look at a cheesecake to gain a couple of pounds. You know how it is.)

The consultant was once more unavailable and I was asked to see another Doctor. Expecting the same one as previously I psyched myself up for a row.

*

16.2 ".... Slippin' and a slidin', all along the waterfall...."

Junior Doctors are not given good facilities and even a consultantís room in the hospital would not have been considered big enough to be a stationery cupboard in the world of commerce so I elected to leave my wheelchair in the corridor and Long John Silver my way into the office. The door of the consulting room opened and a beautiful Indian girl greeted me, blue-black hair bobbed in a modern style, dark brown eyes as lustrous as chalcedony and coffee coloured skin contrasting stunningly with the crisp white of a regulation coat ( I hope young men are taking notes here, this approach is guaranteed to get you a lot further with an educated woman than "by íeck she wur a cracker") Sweeping violins played romantic melodies conjuring visions of ripples washing moonlit shores and the Taj Mahal tinted pink by a tropical sunset. OK, Iím exaggerating but Iíd never met a fanciable doctor before. The girl introduced herself as Kalpana, the brand name of a piece of Ethernet switching equipment used in data networks. Not exactly romantic, but a good conversation point.

After we had run through the background to my case, done the blood pressure thing and reviewed the results of my last blood sample she asked was there anything I wanted to discuss.

"Well there was something I wanted to get off my chest," I said and told her about the physical changes.

"How are your erections," she asked.

"Its a fascinating name, Kalpana," I said, "did you know it is the brand name of a piece of equipment used in computer networks."

It did not work and I had to sit and discuss with this beautiful woman who was young enough to be my daughter the fundamentals of my libido or lack of it. After the doctor had talked about the testosterone blocking effects of Spironolactone (again) and the reasons why my body was changing I understood a few things that had been worrying me and knew more about the testosterone blocking effects of Sprionolactone than I did about Computer technology. Understanding these things worried me even more.

"Basically, youíre telling me that Iím being turned into a woman just in time for the menopause," I said. "I skip my bimbo years and come straight in as a bad-tempered old crone."

"It will not go any further," she assured me, "but donít you have lovely long, thick eyelashes? Anyway, look on the bright side, you have bypassed the hassle of periods and PMS."

Eventually we managed to get away from discussing my erectile dysfunction, rather attractive breasts and career prospects as the first male Playboy Centrefold and started to decide what we should do about remedying the situation. Having entered the room determined to get a few changes made I switched on Turbocharm. (female readers will tut, raise their eyebrows and say "thinks heís god gift doesnít he?" but lets face it, I was only doing what any woman with halfway decent looks and an engaging personality would do to get what she wanted from a man. One rule for them eh boys?

OK, Iím a bastard but like I have said before "this is the real world". To me the obvious answer seemed a reduction in the dose of Spironolactone and it was surprising when Kalpana was doubtful.

Eventually we agreed to a change in medication, the new drug would not have such a drastic effect on my gender definition. Unfortunately it did not have any effect on my Aldosterone problem either and I began to regress to pre - stroke poor health. Another bit of tinkering by the consultant three months later did not help but some of the argument he put up against my suggestions gave me a clue that the problems were in administration rather than at the medical level.

*



16.3 "....for heís got no falorum fol - diddle - I - orumÖ"

Another appointment came round and Teri accompanied me to the hospital. On the way we joked that if we saw Kalpana, Teri could wait while I used my charm and if we saw the consultant she could let her feminine wiles loose. Really my blood pressure had got dangerously high again and I did not feel well enough to go alone. It was Kalpana we saw, fortunately perhaps, the consultant was very competent and more receptive than others consultants had been, but had enough of the medicís traditional defensiveness to make him resistant to some of my ideas. An example was a suggestion that my body seemed to be on a kind of two weekly hormonal cycle, at the apex I would lose weight, shed retained water copiously and be bright eyed and energetic. Coming down, the signs were water retention, lack of energy and short - temperedness. "It canít be the drug," he said, "you take the same dose every day, it canít possibly work differently." Kalpana had been willing to consider the idea of the variable in the equation being not the drugs but my body which, due to bio - rhythm variations or something was handling the medication differently. It was not important but is an example of the communication failures that cause so many problems between doctors and patients.

She was a little apprehensive at first because I had been a bit of a drama queen about the effects of the medication change ( bit of a drama queen is perhaps understatement, Diva on Speed would be more accurate) but these things happen and what we had to do was put it right.

"I still think a reduced dose of Spironolactone will do the trick, get my BP down and other things up," I told her.

"But it wasnít effective Ian," she referred to notes from my previous appointments. "Each time you have been here your BP (I was getting quite into medical slang by this time) has been up. Fortunately we had prepared and could counter this. On each visit to the hospital I had waited uncomfortably for ninety minutes or more in a crowded area. Being an established hospitophobic and not the worldís best hanging around person, the preparation was not the best. By the time my turn came to see the doctor I was chewing the carpet (or would have been if other people had not eaten it all.)

With a flourish Teri produced a record sheet of blood pressure readings taken by the community nurses on their monthly visits. There were minor fluctuations but all were in the normal range.

The same was true of blood samples, pretty important in many cases. My blood was taken at the end of an appointment and information gleaned from the tests on it used at the subsequent appointment. The information was always three months out of date. I asked if the community nurses could do the sample and send it for testing in advance of the appointment. There was no way. Health Service procedures prohibited it. My community nurses were based in a different district than the hospital where I had been treated.

There should of course be a central database of patient records so that wherever one is taken ill in the UK, the local medical staff have complete and current information available in seconds. As I write there are no plans to create such a database.

Once Kalpana had good and reliable information on which to make a decision she had no difficulty in agreeing with us and prescribing a reduced dose of Spironolactone.

This saga has little to do with recovery from a stroke but it does illustrate an important point. Hospital procedures are fundamentally, sometimes perhaps fatally flawed. It is absolutely unbelievable that the information gathered by community nurses is not automatically available to the doctors who have to make life and death decisions. When their judgements are only based on incomplete and outdated information it is no wonder errors occur. The Healthcare industry would not consider employing somebody like me to sort their administrative problems out (and I would not work for them even if they could afford me) so there is little chance things will improve. Certainly a deep seated resistance to computerisation exists but the excuses now being given are pathetic, ridiculous and obvious examples of a bureaucratic seige mentality. People's health and quality of life is far to important for treatment to be governed solely by financial considerations.


*

16.4 "....and take it to the limit one more time...."

It took several months of zero progress to get the medication sorted out and return my physical condition to a point at which I could start pushing against the limits of ability again. During that period there was plenty of time to think about my problems and learn as much as I possibly could about the consequences of a stoke and the brain damage that occurs from it. (People brainwashed by the politically correct attitudes are often horrified by the way I use terms like Brain Damage, Cripple, Disabled. It is really so silly, just as those who tell us we should not call ourselves British because it has racist undertones actually provoke racial unrest, those who try to forbid use of terms like "brain damage" perpetuate the nodding, dribbling, jerky - limbed "spaz" of schoolyard mythology. If it cannot be said that I have brain damage how will people who do not know me ever change their attitude about brain damage?

All my family have joked about my condition, weíll never really know if it earned me any respect or consideration (not that I wanted it to) but it has helped people to feel comfortable about talking to me.

Having plenty of time to consider the information available it was not difficult even with very limited medical knowledge to arrive at a better understanding of what was happening in my body. This raised some questions about some of the standard treatments. I still have great respect for the physiotherapists who treated me (and for their supervisor Giles, who was not an attractive woman. I do not have a one track mind..) but it became obvious some of the standard methods were way out of date. There are some very dodgy websites offering medical advice so be wary when doing your own research, but Karolinska, where I had worked, the Chicago Medical School and other sites run by reliable organisations can be trusted. Donít simply act on your own judgements after all even though Doctors are far from perfect their decisions are informed by years of experience. Having said that I must remind you that only one person in the world knows what it feels like to be inside your body, make sure your concerns are listened to. Do not just rely on Doctors. Talk to the nurses you will surely come into contact with. They do not have the authority to make decisions but through dealing with peopleís day to day problems do usually have more hands - on experience and will be able to tell you the right questions to ask. I was able to phone Kathy from time to time and get advice, other times I just phoned to tell her she is a wonderful person (even nurses like flattery.) Appreciation is so important to all of us. Keep in touch with the people who help you, tell them about your progress, share your good news with them. It really does mean a lot.

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