Getting blood from a stone … and other medical quandaries

“Well, what we could do” the doctor said, smiling “is cut your jugular artery and measure the rate of blood flow that way”. I could feel my blood pressure immediately rising.

Warning: the following publication contains graphic descriptions and images of medical procedures!

For most of the 60 years of my life I have been incredibly healthy, especially considering I wasn’t expected to survive more than six weeks at birth. I was rarely off school, apart from the usual childhood illnesses such as chicken pox. I was never off work, in fact I was quite robust and chipper. As a young child I did spend a lot of time in the world famous Alder Hey children’s hospital in Liverpool. But I wasn’t ill — this was to give my mother some respite. Especially when my younger sister Elizabeth was born when I was two and a half [Mother had six children, I was number five]. I hated being in hospital and even now I get a knot in my stomach when I have to visit, or stay in, them. I have lots of vivid memories of my time there — one was when I was wearing my first artificial legs [aged about three] and I was on a big stage, in what was presumably a lecture hall, along with a couple of other fellow Thalidomiders. I remember there were many people sitting in the audience, all were wearing white coats and they were gawping at us. We were often curious specimens that the medical professionals liked to show off like some medical freak show.

Despite being a wheelchair user, I was very physically mobile. I never sat in my chair at home and I would move around on my bottom on the floor and everything was down at a low level for my height. So for example, light switches were only 2 feet from the ground, my kitchen had low units and a sink that I could reach, with easy access taps. I had a regular bed but with small wooden steps at the side so that I could climb into it. I also had steps next to the loo. In fact, in my last flat I couldn’t access the bathroom with my power chair as the room was at the end of a short corridor which was a ‘dog leg’ off the hallway and too narrow for my chair, so I had to hop there under my own steam. Likewise, the kitchen was far too narrow to accommodate my power chair. I was quite fine with this as it kept me fit and active. I could climb up onto furniture and even go up and down carpeted stairs [in fact when I lived in my Mother’s house my bedroom was up on the first floor].

Quite a few of my fellow Thalidomiders have had many operations, some of them from a very early age. But I have been lucky, as my first operation wasn’t until I was thirteen and it wasn’t related to my impairment.

Oh, when I was about three years old, the doctors wanted to amputate my feet — these are perfectly formed, with the regular numbers of digits; one big toe and four small ones, with an arch, a heel and ankle. I can’t actually walk on my feet though as the left foot is bent upwards and the right foot is bent inwards. I could draw with them and pick up objects from the floor. But from an early age I was made to wear awful really heavy artificial legs, their design hadn’t much changed since WWII [unlike the super hi-tech prosthetics and even bionics that are available now] and in their misguided (but probably well meaning) wisdom, the doctors wanted to chop my feet off so that I could fit into their crappy and dangerous legs better. Thank goodness my Mother told them no! — for more details on this, see my published post Pleased to meet you…. part 2

The doctors were quite keen in chopping bits off us Thalidomiders. Like cake makers cutting away uneven or excess sponge, they tried to mould us into, what they deemed as, ‘ordinary’ body shapes with sharp scalpels. They even wanted to chop off the half finger I have on my right hand. I can’t actually move this finger but it does have a sense of touch. I’m glad they didn’t remove this apparently useless appendage as when I used to smoke, it came in very handy for holding the cigarette in the cranny. Thank goodness for Mother once again standing firm against the medics.

In school I had a boisterous ‘play fight’ with a fellow Thalidomider. He took it too far and kicked me hard in the balls with his one prosthetic leg. For the next few weeks I had severe stomach pain. My local doctor diagnosed constipation — but I was going to the loo normally. One weekend I was staying at my adopted Aunt Lucy’s house. After helping me in the shower she noticed a large lump on my groin and took me to the hospital to be checked out. I had an emergency operation that afternoon. It was a strangulated hernia.

The op. went smoothly. They got the anaesthetic into my veins without any difficulty. When I was in recovery the doctor called by. He said that they had to remove my left testicle. I wasn’t bothered at the time, I was really blasé about it. After all, I knew I couldn’t have kids, as my mother informed me via a TV documentary when I was ten years old that I was sterile [oh how wrong she was! — but that’s for another story].

However, later on when I discovered sex I became almost paranoid about losing half of my cojones. I was actually more self conscious about this, than having no arms or legs! Just before the act of lovemaking I would suddenly panic and say to my partner something like “Wait! I need to tell you something. I only have one ball. But it has nothing to do with Thalidomide, I was born with two but I got a strangulated hernia ….”. They would always respond with a sweet smile or a giggle and tell me not to be so silly. Having only one nut made no difference whatsoever, performance wise :)

It was around the time of the hernia op. that I gave up my artificial legs. They were completely useless in terms of function and aesthetically they looked ridiculous anyway. Besides, the older I got the more dangerous they became — as I got taller, I had much further to fall, without any ability to save my head or face from hitting the ground hard. It was such a liberating freedom and I didnt have to worry about being accidentally pushed over in high school, nor did I have the burden of carrying around my school books or be late for my classes. It would be quite a few years before I saw the inside of another hospital.

When I left home at the age of 22 I threw myself into things that I was prevented from doing by my over-protective mother and smothering step-father. Some of things I am not proud of now, but it was important for me to have the right to take risks. I put my body through great pressures. I drank only moderately, but I experimented with various drugs — weed, speed and acid tabs [I drew the line at heroin after watching a work colleague jack up and then be a total zombie for the rest of the day, so I never touched that shit]. I drove my first adapted car like an idiot [thankfully I didn’t hurt anyone or myself], just thrilled at feeling totally equal with everyone else on the road. My hormones bounced off the walls like any other male adolescent and I would ‘fall in love’ with almost every girl that I became acquainted with. Sometimes [often] my advances would be rejected and my love unrequited, so I would satisfy my sexual urges by sleeping with the occasional prostitute or expensive escort. I spent money with reckless abandon — until the bank put a stop to my largesses, by confiscating my credit cards until my debts were repaid.

In short, I’m amazed I survived my reckless lifestyle. Of course this cavalier behaviour couldn’t last and perhaps I paid the price some years later.

But for the time being I was physically fit and holding down a full time job with social services. I could burn the candle at both ends without any ill effect. Friends would call round to my flat and we’d sometimes party until around 3am and I would still get up for work the following morning at 7am.

Only occasionally would my body give me warnings signs to slow down a bit. I remember kissing and necking a girl who was a neighbour, in my car. Just as I was getting fully aroused I suddenly felt a very sharp stabbing pain in my left side. When I got back home the pain intensified and so she telephoned for an emergency doctor. He immediately diagnosed acute appendicitis and rang for an ambulance.

Again there were no problems putting me asleep, but when I came around from the anaesthesia I was informed that “er… we couldn’t find your appendix. It appears that you were born without one, sorry”. Thalidomide — the gift that keeps on giving! The pain was in the exact spot where my appendix should have been, but I had an internal infection that could have been treated with antibiotics!

Another thing in common with my fellow Thalidomiders who have short arms [or no arms at all] is the problem of getting an accurate reading of blood pressure. I would get a free wheelchair from the NHS [just in case my power chair broke down] and they actually insisted on a medical — just to be pushed around in a chair! This obviously involved checking my blood pressure. The nurse tried the smallest cuff they had [a cuff used for children aged around 6 years and above] but my ‘arm’ was just too small to get any kind of reading. After several attempts they gave up. The consultant rubbed his chin, in apparently deep thought.

“Well, what we could do” the doctor said, smiling “is cut your jugular artery and measure the rate of blood flow that way”. I could feel my blood pressure immediately rising. After a moment of silence he burst out laughing. “I’m just kidding, just kidding with you!” he guffawed. I felt immediate relief, but I didn’t appreciate his gallows humour at the time.

Over the years lots of nurses, doctors and dentists have tried unsuccessfully getting an accurate blood pressure reading. But when I was in my mid 50s on a Urological ward in hospital, they managed to source from a maternity hospital a baby cuff. They had to modify it using scissors and surgical tape as it wasn’t compatible with their machine, but eventually they got it to work! It was the first time I ever got an accurate blood pressure reading - it was high.

Getting blood pressure readings is really only a minor medical problem that us Thalidomiders often face. By far the most problematic issue for both us and medical staff is taking our blood! Our tiny digits contain very small veins.

In my 40s I started putting on weight and I couldn’t move on the floor as fast as I used to without getting breathless. I’ve heard the phrase ‘middle aged spread’ and so I tried dieting — in fact I tried every diet going; Atkins, Paleo, Vegetarian, Vegan — you name it, I probably tried it. I rarely drank [I certainly never drank at home] and I hadn’t touched drugs for years. I also stopped smoking cigarettes in my early 30s. I read everything I could about nutrition, vitamins and healthy living — much of it contradictory.

I finally settled down into a long term relationship with Angela, my future wife and when I was 49 I became a father. Angela had wanted to be a mother for years. She was 33 years old and although I knew that Mother had been wrong about my fertility [I’ll talk of that traumatic time in another post soon] I wasn’t sure whether my great age would be a factor. We were prepared to go down the IVF route or other methods like a lot of my contemporaries did, but we were really lucky and Angela gave birth to our first child, a gorgeous baby girl we named Daisy, in December 2010. We were both ecstatically overjoyed.

Within months of becoming a dad I started to feel really fatigued and I got frequent water infections. I was diagnosed with Type 2 Diabetes and my health started to go downhill very quickly.

One of the consequences of having diabetes was the necessity of regular blood checks. I would go to the local clinic and it was often a laborious process. It was 50/50 as to whether they would get the blood successfully or not. They would try up to a maximum of three attempts in each hand and then give up. Some of the phlebotomists were more successful than others. Taking their time and lots of patience was a key factor. But if the clinic was busy, which was usually the case, then they would tend to rush things a bit. Below is a video of a successful attempt. The documentary filmmakers got permission from the local NHS health authority to film in the clinic. The phlebotomist did a great job, particularly under the pressure she was under with having a TV crew watching her work!

As I got older it became even more difficult to get my blood. The veins just dried up. The Thalidomide Trust loaned me a portable vein viewer…..

**** dear Medium readers I’m getting quite tired typing and my body is aching. I’ve just realised that I’ve written tons about my health on Facebook~ would you mind terribly if I put some of those posts on here to save me typing it all up? Why reinvent the wheel? Please forgive this indulgence. Do let me know if you find this annoying. Oh and please excuse the awful grammar — it’s Facebook not the Encyclopedia Britannica. Thank you. *****

Getting stuff into my veins was worse than getting blood out of them.

Just after being diagnosed with diabetes I had an operation for kidney stones, in 2014. I had bouts of pain over the previous fifteen years or so with kidney stones and they either passed naturally [and painfully ~ I have a small inkling of what giving birth might be like!] or they would be blasted to dust with ultrasonic lithotripsy. But x-rays discovered they were staghorn stones — they had sharp points with couldn’t be blasted lest the fragments penetrated organs, so they had to be removed surgically.

It was around this time that several thalidomiders had died, due to various reasons and my friend Jeanette, who was similarly impaired, died whilst undergoing surgery. So the idea of a major operation was quite frightening.

The anaesthetist tried several times to get the cannula into my veins. Each time I felt a sharp pain searing through my hand, far sharper than the phlebotomist’s needle. He tried my right hand first, then moved to my left hand and then back to my to my right. This went on for at least half an hour. Finally he got the thing in and I drifted off to an unconscious sleep.

Apparently the operation was over four hours and they didn’t remove much of the kidney stones! The reason being that it took ages to actually reach my kidney as some of my internal organs are not in the places they should be. Thalidomide — the gift that keeps on giving! Also I had complications with my breathing…..

During this operation I stopped breathing several times. Afterwards I spent a fortnight in the intensive care unit on a breathing machine. In my hand was still the heavily taped-up cannula which drip-fed morphine into my veins. A doctor who was examining me accidently pulled out the cannula. I came off the breathing machine and I was soon breathing normally. They eventually realised I was allergic to morphine!

The subsequent operation to get rid of the stones once and for all was cancelled three times. Firstly, because they couldn’t secure a bed in the intensive care unit. The second time was because the operating theatre was flooded and the fourth time I developed an infection and my temperature soared. I was so anxious about getting it over with, I practically begged the surgeon to do the operation anyway. “I’ll take the risk and I’ll sign a waiver that I won’t sue!” I pleaded. But he said he couldn’t operate for two reasons: firstly, it was illegal and secondly I would probably die if they operated on me whilst I was so ill. They admitted me to the ward anyway and they tried to get my temperature down. This was achieved by putting my bed next to an open window in the middle of winter [it was november], plus they had two large fans pointed on me. I had no pyjamas nor any blankets; just a single thin sheet for modesty.

At the end of the week I was well enough to have the operation, huzzah! Again the anaesthetist struggled to get a needle in my vein. Sticking injections in both of my feet feet and both hands, I eventually just said “oh for god’s sake, just give me gas!”. Immediately a mask was put on my face and I went into a deep coma. When I woke up in the recovery area the needles were still stuck in my feet!

The operation was a complete success — they used ketamine instead of morphine. I was only in the ICU for two nights and I felt great — although they were administering doses of ketamine every four hours!

I was moved to the regular renal ward and it was there they suspected I had sleep apnoea. They tested the oxygen levels when I was asleep and discovered that I stopped breathing regularly. That was why I had been falling asleep during the day in the previous few weeks. I even fell asleep when driving my power chair! Once I was going around IKEA with my wife Angela and I fell asleep. I almost demolished one of their mock up living rooms. Angela got annoyed with me thinking I’d done it deliberately — it’s true, I do hate shopping! The second time was in a shopping mall, the Trafford Centre in Manchester [one of the biggest in the country] and I fell asleep, almost driving down the escalator. Luckily I crashed into the railing just before it — otherwise I probably would have been killed.

my current medicine regime …

For the next few years I was fairly well. I was controlling my diabetes with a cocktail of drugs and I was being careful with my sugar intake. I stopped drinking alcohol completely. I don’t do much exercise though ~ in our new house all the rooms are spacious and accessible for my power chair so I am in it pretty much all day. A few months ago my five year old son Oliver was playing on the floor with his toy cars and said “Please Daddy, can you get out of your chair and play with me?”. Of course, I couldn’t refuse! But I found that I couldn’t move about so easily and I had severe back pain — so I had to lean against the sofa for support. I certainly couldn’t bend down like I used to, even to pick up a toy car. I think a lot of this has to do with wearing those heavy damned legs all those years ago. Thalidomide — the gift that keeps on giving!

But I love being occupied with my kids and we’ve discovered lots of fun can be had, even when I’m in my power chair. Oliver loves riding on the back of it when I pick him up from school. Daisy did too, but she’s too big to stand on the chair now that she’s 11.

It wasn’t until the end of 2019 that those pesky staghorn kidney stones returned. A large stone was blocking my urethra tube, so of course I needed yet another operation. So in January 2020 I was wheeled into the anaesthetist room to be zonked out for the operation ….

After this major disappointment a brilliant doctor at the Thalidomide Trust found a top class anaesthetist and a world renowned surgeon. They were both based in London, some 230 miles away from Liverpool. I went there by train with my PA. This operation wouldn’t be as invasive as the previous ones, but using keyhole surgery involving a camera going into my penis and the stones blasted to smithereens by laser ~ but it would still have to be done with a general anaesthetic. The anaesthetist got to work in my private room before the operation. He managed to get the anaesthesia injected into the vein in my neck! Plus an additional cannula under my right armpit.

As an extra back up, the anaesthetist said that he would also give me an epidural just before I went into the theatre. “This will be a much simpler and far quicker process” he confidently declared. Ha!

The medical term for this procedure is apparently a ‘subarachnoid block’. I was in agony after he constantly prodded and poked my back with the syringe. He tried with me lying on my side, then sitting up [supported by a kind nurse from Australia], but this position was even more uncomfortable, so he put me on my side again. “I’m not giving up, I’ve never failed before!” he declared, his professional pride obviously dented …. but not as much as my back! ‘I wish you bloody well would!’ I thought to myself. Even the nurse looked at me apologetically as if to say ‘I’m really sorry about this arrogantly stubborn man!’. Finally, after what seemed like an eternity, but was probably about half an hour, he admitted defeat and the operation went ahead anyway. During the op. my back was x-rayed — they discovered that the lower half of my spine was fused, there were no gaps in the vertebrae to get the needle in! Thalidomide — the gift that keeps on giving!

That operation was a partial success, my urethra was still partially blocked so I returned to London six weeks later for part two — the same procedure of getting a line in my neck and armpit, but this time abandoning the epidural! This time I went there and back by taxi as the covid pandemic was beginning. I left London literally one day before the lockdown. If you’re interested in further detail, here is the case report written by the Trust doctor, the surgeon and the anaesthetist [the painful epidural palaver glossed over!].

This post is becoming a bit of an epic and my wrist is getting sore [rsi?] but i’ll just finish off by saying that since that over the last two years there have been further complications with my bladder. Through numerous cystoscopies they found red spots on the bladder lining and I get regular water infections. Prostate cancer was thankfully ruled out after a biopsy. Incidentally, the first cystoscopy was really painful as they shoved the camera tube into the wrong urethra opening — yes, I discovered then that I was born with two of them! Thalidomide — the gift that keeps on giving!

Oh and my urologist persuaded me to drink only decaffeinated tea — I’ve been caffeine free for 3 months now. Something even the Mormons couldn’t do! ;)

Over the last two years I have had dozens of appointments with urologists, nephrologists, lots of various scans and x-rays and I’m fed up with visiting hospitals. But thank goodness I live in a country where medical care is [so far] completely free and I don’t have to worry about insurance etc. To be frank, if I lived in the USA I would probably be bankrupt by now or dead.

I shouldn’t complain though. Many people [as well as other Thalidomiders] have suffered far worse and at least I have made it to 60 (many others have sadly passed away). Not bad, considering I wasn’t expected to live more than six weeks from birth. I’ve been very, very fortunate in my life.

Sorry it’s a very long read [the autobiography will be longer!] and I’m sure there are loads of typos, grammatical and spelling errors — but I’ll keep polishing it up until it reads smoothly as marble.

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