Jewish Health

 

And then it kind of it all came to a head in about ’99/2000. I’d had a tremendous amount of surgery over the years, always had the same scar, my surgeon’s a brilliant surgeon. He always cut the same scar, so I’m not massively scarred. And I was in a very bad way. I was, after more surgery I was in a very bad way. I was vomiting pretty much whenever I ate. And I was just in a really bad way. And I was given a temporary, when I was given jejunostomy which is actually most worse than a colostomy or an ileostomy, because it’s high output so the volume of fluid that comes out is litres.

 

And that was a really, really tough time, because I’d always said I didn’t want a bag. I’d always said that would be the thing that would finish me off. I would never have one. I would never accept it. And of course you adapt and it wasn’t as bad as I thought apart from the fact that I couldn’t wear jeans anymore, I had to wear springy trousers, and so I was more bothered by the fashion [laugh] problem.

 

 

Jejunoscopy. It’s, I mean it was down here, but it’s high output, it’s basically coming straight out from the ileum, the top part of the ileum. So literally you’d eat something and within twenty minutes to half an hour that something was coming out to the bag. So I was really bad. I mean it did my head in, completely did my head in.

 

I think because my memory’s hazy on stuff now, I think I must have had it, I must have had it six months to a year, I think. Six months to a year I reckon. Something like that. You know, I mean they did want to leave it there, and it was me saying no, no, just give me another go, and you know.

 

Because it’s an, it’s an extreme thing to do. Like I mean, basically this line goes to the main, it goes up over the clavicle or under the clavicle, I’m not sure, up here, and you can see the line there, and it goes into your main artery to your heart. So what it means is it’s like sending it into the best distribution centre in the world, which the nutrition very quickly hits my heart and then gets pumped right round the whole body. It’s brilliant. But it wasn’t something they wouldn’t have considered before then because it’s expensive, it’s extreme, they’ll do them temporarily for people sometimes if they do bowel rest and stuff. I mean I had, when I had the naso gastric tube, I didn’t have to have it, I could have drank Fortisip and Ensure which are like high protein drinks and Build Up. But both Fortisip and Ensure made me heave, made me want to vomit.

 

I chose instead to go through the rigmarole of sticking a tube up my nose, because that was easier than me drinking this horrible stuff, that really was, because I just couldn’t stand up the build up stuff at all. So that’s what they used to do for sort of bowel rest.

 

And there’s probably, there’s a fair amount of people in the UK who have these lines now. But it’s a very expensive, like, I cost more to keep alive than I earn, you know, which is a weird one. I’m looking forward to the day when I earn more than I cost to keep alive, very much so. But I think a bag of my nutritional feed is about, the price has gone down, it used to be worth about £150 a bag, now it’s about £120 a bag.

 

I have eight of those every two weeks. So there’s a thousand pounds there in just the nutritional feed. Then there’s the cost of the deliveries, the cost of making it, the cost of the ancillaries, the, the gloves and the things because I have to (do) it aseptically. So I have to be a bit of a scientist myself, when I look after myself. So I probably over a month, I must cost, it must be about three grand a month. You know, so I must be 30 to 50 grand to keep alive I think. Something like that.

And have they said it’s a long term..?

Yes. I don’t it would be nice to think that maybe one day I wouldn’t have the line, but in my head I don’t perceive that that’s a possibility. Not at the moment. Maybe in twenty or thirty years. But, you know, they do bowel transplants now. But they, it’s something that they’re still trying and they only give them to people in extreme cases. People who are going to die that don’t have a bowel transplant and they may still die with a bowel transplant. My hope is there’s some kind of plastic intestine is develop that can absorb, but I don’t see how that can happen. So yes, I just imagine this is for life, and I’ve, I’ve accepted it.

Has it got easier this feed business over the years, because you’ve done it for quite a few years now?

The, the equipment’s got better. Yes, the equipment’s got better. It’s got easier yes, it’s definitely got easier. And I think, you know, I’m pretty naughty in that I cut some corners, where I, where although there are certain procedures you have to follow in order to make sure that you don’t line infection, there are other procedures that I see within the whole thing, the list of things I have to do, that I go, well actually I don’t really need to do that. That’s just being a little bit anal, so there are things where I cut corners, and actually the one, the most scariest, in fact one of the most scariest things that has happened in the last two years, was because I was getting a couple of line infections a year, because I’m a bit, you know, swift and not that careful.

They tried a new drug on me. It’s a drug. It’s like a prophylactic. You put the drug, it’s an antibiotic, you do your fluid and then when you’ve finished you inject this antibiotic prophylactic into the line. It sits in the line fighting bugs and infection and then before you hook up to your feed again, now, you take it out. But what was happening, was I was putting this stuff in, and then I would hook up to my feed and it just started occurring that I would have palpitations and I would feel like I was heaving a heart, the first time it happened I thought I was having a heart attack. It was terrifying. I was with a girlfriend. I was living with my girlfriend at that point, and I had, my legs went from under me, I had to sit down on the floor, my head went red, my veins came up on my forehead, my heart was beating in my head. I thought I was going to die, and it was painful to breath, and I didn’t call her, because that’s me just being stupid and stoic, and I’ll deal with this. I don’t want to panic her, and it kept occurring and it obviously made me scared to hook up to my feed. And no one knew what was happening, or why it was happening.

And they decided, I went to see a heart specialist at [hospital name], well [hospital name], and they decided to put in a little memory stick into my chest that I could activate when I was having one of these palpitations and it would record my heart rate. And I knew, I was pulsing myself and checking myself, and I was going up to heart rate of like 160 to 180, I was, it was really bad. And so whenever I had one I had to turn on a little listening device that could record it.

And I had a really hard time. They put it in very badly, it was sticking, it was protruding from the skin, it broke the surface of the skin, it was painful. I then had it taken out. The … Because there was an infection in it, the, the sort of the drugs to numb it while I was having it removed, didn’t work, so it was tremendous thing having this thing kind of ripped out of my chest.

And it turned out after all of that, that the antibiotic is suspended in a liquid called quinine, or quinine, which is in tonic water and all kinds of things, but quinine if it is injected into your blood stream can cause palpitations and heart problems. And no one had known that. And it literally is, so you know the decision was made now, what I do is I can inject the antibiotic, but I only inject, literally I think its 2mls to cover the length of the line, but not to go into my body, and then when I hook up again, I withdraw like more than that, so that it’s not in my body.

And a couple of times where I’ve hooked up and turned the machine on without having withdrawn the antibiotic, and the machines been on, literally for .5 of a ml pumped into me, almost immediately my head begins to start going and its terrifying I hate it. So that’s been the one bad thing that’s come about but obviously now I’m more careful with that.

I tried many different drugs and I have been on drugs for twenty years, and with very little effect if any, well positive effect, but some quite disturbing side effects, which were primarily drowsiness, being rather weak, but feeling uncomfortable like that for many years, is quite disturbing. 

 

And at that point, at the age of 30 or so, we started to hear rumours about this new operation for treating torsion dystonia in a patient which was a brain operation. It’s called DBS – deep brain stimulation and it’s a rather dramatic operation but the results appeared to be quite good. So I started making further enquiries and once again found ourselves flying to England to see [Dr A] at [hospital B], who gave me the first assessment, and said it would appear to be a good classic case for the operation and I would be a good candidate for the operation. The same was said by, by [Professor B] who was my specialist in Israel. He said, “Your gait is sufficiently bad. And it has a sufficiently bad effect on your everyday life, for it to justify such a drastic action.” And so we met this Professor here in, in the UK and he said it sounds like a good idea, and something that could potentially give me good results. It could also significantly improve my quality of life.

 

So a year later [L] and I packed our stuff and moved to the UK, and in December 2004 I was in the operation room in [Hospital C] under the hands of [Professor C], who is a renowned neurosurgeon.

 

I expected to be, I wouldn’t say cured, but I expected to see a great relief in the condition. I woke up the following day. It’s a rather, from the patient point of view, it’s a rather simple procedure. It was done under full anaesthetic. It wasn’t very painful. There’s no bone cutting, there’s drilling through the skull, into a certain part of the brain, inserting an electrode into an area called the GPI – Globus Pallidus Interna and inserting a pacemaker under the skin here in the chest and then a cable connecting the two and the theory is, by sending this constant stimulation to this part of the brain, it somehow, I’m not sure exactly how but it does, somehow, relaxes the storm, the electric storm in that part of the brain, and the condition is significantly or the volume of the condition, the volume of the noise, is significantly reduced. 

 

So that operation was done in December 2004, and the anticipation was that in a few mon… a few weeks, six weeks later I would see the benefit. Weeks have gone by and there was no benefit whatsoever. On the contrary, there was quite significant deterioration. If I could hardly walk prior to the operation, making the, the smallest crossing the room was practically impossible. I was on the verge of, actually in some ways, I wished I was in a wheelchair, because then, if you’re in a wheelchair you can actually move. You can start putting the - those who can walk, and those who are in the wheelchair - it was being neither here nor there, because I couldn’t really walk, but I couldn’t, I couldn’t bring myself to sit in a wheelchair. So it was a horrible place to be. I’m not suggesting sitting in a wheelchair is good in any shape or form, but at least you are not all over the place and trying to get from A to B. 

 

You get this peace of mind. That’s the way I imagined it. It’s completely, obviously, I always remember that being actually able to get up and walk is a great benefit compared with others. But in my mind, I was in a terrible place not being able to walk and not being able to get from A to B otherwise. And my condition continued to deteriorate as time went by, and I went to see the neurologist, Dr B,

and kept on being told that it takes a while before the benefit kicks in and I have to be patient and there’s no reason to worry, but things will improve and just be patient.

And as my patience ran short, I suggested to the team, to both the neurosurgeon and neurologist that maybe there was something wrong with the position of the electrodes. And they said, “It’s very unlikely, but just to be on the safe side then…” after I insisted, they agreed to send me to an additional MRI.

And I remember quite clearly coming out of the MRI room and seeing the neurosurgeon and he told me on the spot, [Professor C], and he told me on the spot, the electrodes are in perfect position and he wouldn’t have moved them by a millimetre. Which for me was the worst thing I could possible imagine, because if he would have told me “My mistake, it’s off target”, it would have been great news because there is a reason why it doesn’t work, whereas if the electrodes are in the right place then may be my condition doesn’t react well enough to this operation. So this light at the end of the tunnel’s actually switched off.

So that was the worst possible result that I could. And then for another, that was about four months after the operation and I kept on going back and forth to both the neurosurgeon and to the neurologist. They kept on tweaking with the machine, changing the voltage, changing the pulse length, changing all the different parameters within the system… it’s quite a tricky to sync, to get right.

But the analogy that I suggested was that in the TVs before the days of digital TV, you could tune it until you get some sort of get a reasonable picture, you get rid of the snow, and you get some picture, and then, and then you fine tune it to get the best picture. But in my case, I was completely in the snow. So there was no picture at all. They said, it’s a good analogy, at least we’re in the snow. So … getting some pictures should be relatively easy. Fine tuning can take a while so let’s get something. And we couldn’t get anything.

So, after a very difficult, very challenging year and a half in the end of 2005 or the beginning of 2006, I went to my GP and said, “I would like to get a second opinion. Even if I have to go back I would like to have a second opinion. Something doesn’t sit quite, something doesn’t sit well with me.”

She said, “It’s not a problem at all,” and she send me to the team at [hospital B]. I went to see [Professor D]. And she’s a neurologist, and I brought with me the CDs of the MRI that I had from the, the second MRI that I had, in, in [Hospital C].

She looked at it, and an hour later she called me again, and she said, “Oh it’s quite obvious why it doesn’t work. I mean the electrodes are six to seven millimetres off target,” which in brain surgery are like trying to get to London and then ending up in Bristol. It’s way off. It’s unreasonably far.”

And that was probably the happiest day of my life, well not the happiest day of my life, but it was a very happy day. It suggested that my gut feeling was always there. For a year, now, for a year and a half, since I’d had the MRI done in the first place, there was a very clear something was very wrong if electrodes are in the right place. Look for the problem elsewhere. And there was just such a relief to know that there is a real reason there, a physical, a surgical reason why it doesn’t work. I was just over the moon, and I couldn’t get rid of the smile for a long time after.

And then I saw my saviour, [Professor E] from [Hospital B] who looked at the MRI again and said he totally agreed it didn’t take him very long to get the same conclusion, without seeing the conclusion from [Professor D]. And, and before I jumped into the operation again, to get my brain opened up, I went to see, [Dr C] who is a British doctor who now lives and operates in Israel. I asked him to look at the MRI and he also agreed. I knew there were three experts confirming that the electrodes are indeed misplaced. I was more than willing to throw myself at the hands of the neurosurgeon once again.

And the second operation took place in May 2006. And it was very short of a miracle, the results were tremendous. I remember two days after the operation I got out of bed. I could walk. It wasn’t very good. It wasn’t normal, but I could walk with some…. Just like someone put a wet blanket over a source of noise, and it was just quiet, I was just relaxed. And it was like an amazing peaceful experience. And that’s it. From there on it just kept on getting better. It’s not, my gait is far from normal, but it’s a world apart from where it was. 

So I went up to [street name] to see her. Trouble is she won’t let me pay. So, you know, I can’t keep doing that. And she said, “Well you’ve got a lot of blood behind the eye.” Anyway to cut a long story short, it’s what they call an occlusion. And something behind the eye breaks and there’s no way you can do anything about it.

 

She called in a consultant… a friend of hers to see me as well. He was a specialist in glaucoma and they were very helpful. But I felt very embarrassed about my consultant here, you see. At any rate the blood cleared. I had to take a lot of Acetazolamide tablet you take by mouth. It makes your fingers and toes like pins and needles and that sort of thing, so you have to be very careful not to have too much of it. But he’d given it to me before, the consultant, when the pressure was a bit high, but he’d only give me three and say, “Come and see me in a week.” And always it had gone down. But anyway this time I took it for quite a long time.

 

Anyway eventually I saw the private consultant again, because I was due, I used to make an appointment months in ahead, and I told him what had happened. But he said again dramatically, “My God. You’ve had an occlusion” [laughs]. He said, “There’s nothing you can do.” But I can get about with it… I can’t read a thing, I can’t read the biggest letter on the chart.

 

But I can, fortunately read with the other eye. It’s a bit of a strain sometimes, but you know, it’s quite possible, and if you look round my house, you’ll find a magnifying glass here, one in the kitchen, one in the bedroom [laughs]. 

 

Any rate, I decided I really ought to change. I had nothing against him, but I mean he was about 75 by that time, and I was about 81. So I thought it was time we parted. It was very amicable and he sent me to the consultant at [hospital], and he said to me, “He’ll be all right. I trained him.”

 

So I went to [consultant] and he looked after me. I don’t see him very, because you see all different people, but I would see him if there was anything they didn’t know what to do about. On this occasion the consultant said, “I’m going to operate on that eye.” It’s not my good eye. The pressure didn’t go down, you see, everything went up when I had this occlusion and they couldn’t get it down again like it used to be. 

 

So he said I’ll have to operate on that eye. And I said do you mean a trabeculectomy. “Oh no, he said, we do a modern thing now with a little tube, it’s called an Ahmed tube.” 

 

And I initially I went to the hospital to have this drug, because it has to be canulated, injected into a vein, but they taught me how to, they taught me how to self canulate. And then I was able to do it at home on my own leisure. And I did that for about, well two or three years. But the pain in my legs, particularly my shins didn’t really get any better, and sometimes, I would wake up, I would wake up, and I would wake everybody else up in the house screaming in pain. Literally screaming out.

 

And then all my veins collapsed and I couldn’t, I couldn’t do cannulation, and the organisation who ran, who delivered the drugs had nurses who would come and do the, do the injection if you couldn’t do it. So I phoned up and I said, “Can I have the nurse please. I’m struggling.” And the nurse came down. I’ll never forget this ever. She, she tried ten times, five times in each arm to get this needle in so that the drug drip could go, and she couldn’t, she couldn’t do it. And she said to me, “I’m not going to try anymore because it’s just going to cause you unnecessary pain and you know, I just don’t think I can do it.” So I said, “Well look, you know, it’s just one of those things don’t worry.” And she said, “Okay.” And she went.

 

And then [name] my wife noticed she’d left her box of tissues, so she ran out to try and catch her, and this poor nurse was sitting in her car sobbing because she hadn’t been able to do it. But in the mean time they developed an oral drug. And so, again, only on a named patient basis. And this was very, very new. Just come into, what’s it, to use, and had only just been licensed. 

 

So because of the because of the vein problem I got permission, or [hospital] got permission for me to be given it, and I had to take one a day for a week, then two a day, and then three was the top. 

 

When I got it, I did one or two and then I took three for two days, and I collapsed into a diabetic coma and my blood count was 1.9 and it turned out that nobody knew that this drug, this new drug had a huge effect on sugar levels. And nobody knew that because I was the, I was the, as far as I know, I still am, but I was certainly the first person to have the combination of diabetes and Gaucher’s. So nobody knew that there would be an interaction with the insulin and the Miglustat – the new drug.

 

And so I was merely taking three Miglustat and carrying on with the levels of insulin that I was taking and I was effectively, I was, I was overloading myself with sugar reducing drugs. So I came off the Miglustat for a while. And then I cut down on the insulin and I in fact cut down the insulin by 65%. And then I went back on the Miglustat and then I was fine. I was all right. Until I got a letter from [hospital] saying, “Stop taking three Miglustat and reduce it to one immediately because we have results of some blood tests that we took last time which show that your kidneys are failing, and this is the result of the Miglustat. So you must no longer take three, you can only take one.”

 

And so that was ongoing chemotherapy, after the initial chemotherapy. And then there was a gap of a few weeks, and then as planned, I had a stem cell replacement therapy in [Hospital], which is where I went in, I think, in late August 2007, and the first thing is the… oh before that, you have to have the stem cells removed which is a process of where you go in and they take out, they take your blood your through out of one arm, and back through a machine and back through the other arm. And then, they store your stem cells.

 

And then a few weeks later I went into hospital and they give a massive injection of a chemotherapy which destroys all your cells, but then they put back your stem cells, and then that repairs your system. I was in hospital for just over three weeks I think, and that is a well known process for dealing with multiple myeloma; stem cell replacement therapy. And that again worked pretty well. Now the theory of that is it gives you relief from the effects of the myeloma for a period of years. Unfortunately there’s no cure known at the moment for myeloma, although there is a series of things, some of which I’ve mentioned and some I will mention shortly, which can stall it, and keep it away for a period of months or years, but there’s no actual cure. But at that time I was told it could keep me clear, in what they call “remission” for between two to four years. But it’s actually been about two and a half years, and it has now come back. But I’ll come back to that later in the story.

 

The key measurement of myeloma is the paraprotein. Now when I was diagnosed, it was - the number should be zero in a healthy person - when I was diagnosed it was 60. When I’d finished the VAD, and the initial treatment, it was down to about ten, and after the stem cell replacement therapy, it was down to about 2, and it stayed at just under two, for about two years, and it’s started to creep up now.

Oh how did feel physically or …?

 

Oh well emotionally, not an issue really. Physically, well the worst thing is having a Hickman line. When you’re having a continuous infusion of drugs they can either do it, by continually sticking things in your body, in and out, in and out, in and out every day. Or you can have a Hickman line applied which is stays on your body, which means they can just put drugs in and out, very easily. And it is very good. Hickman line works very well. The only difficulty is actually the, well it’s not a difficulty, the insertion of it is a bit of a procedure to have to go through. But it’s done under anaesthetic and it’s not too bad I suppose. It was a bit of a shock first time. Second time I was used to it, and when it happens again, when I have my next stem cell, I’ll be used to it.

 

 

Well, because I didn’t really know. The first time when I was really in a very bad way, they didn’t explain to me what was going to happen. I know, I knew what a Hickman line was, but I didn’t really appreciate that I was going to have effectively an operation to install a tube into my chest. And they didn’t explain it well, and I went down to the theatre, and I was really rather shocked by what happened there. But after that it was okay. And having it was okay, although I did unfortunately - one thing I’ve left out - sometime during the whole procedure, I think towards the end of the first series of treatments, I got an infection in 

the Hickman line which mean that I actually had to go into hospital for a couple of weeks while they tried to clear the infection while leaving the Hickman line there because they still needed it for more treatment. But in the end they had to take it out. So I wasted really two weeks in hospital, because they had to take it out in the end, in the end anyway.

How did it feel having the stem cell transplant? Well the worst thing is.., the actual transplant is nothing... it’s amazing. I mean you go in, day one, you have the chemotherapy, which is just an infusion. Well no, the first thing is the hickman line. Then the infusion of the chemotherapy, which is painless and then the next day, they bring along the stem cells, in a refrigerator container and they put them back into your body through a drip, and its again quite painless and, no great drama about it.

But then, of course the effects start to take over; the effects of the chemotherapy. And you go through a pretty rough few weeks actually. It’s particularly nasty. All your blood count measurements go down to zero and you have to stay in a room virtually secluded from the world for best part of three weeks because you’re liable to pick up any infection, because you have zero resistance to infection. So you read a lot of books, and watch a lot of television, and make a lot of phone calls hopefully. But also its painful. It affects the mouth particularly. I don’t know why but it affects the mouth and swallowing. You don’t eat very much. So I’ve got that to look forward to this summer. But I’ve been through it once, and come out of it.

 

Then in the follow up... there’s the VAD is the initial treatment, and then there’s a series of chemotherapy which you have at home, which is by... I can’t remember the technology of it, but you have a chemotherapy which is applied intravenously. You have a ball hanging around your neck, and it gradually it goes into your system. And I had that about four times, I think, during spring 07.