Disclaimer: The following is a guest post from a fellow reader of this blog, and a person living with type 2 diabetes as well as HIV. The thoughts and opinions expressed here are not necessarily my own, nor are they intended to diagnose, treat, or advise anyone's medical condition. Expression and platform for all experiences of living with diabetes are intended as a tool to generate awareness, increase our empathy and understanding and generate questions which we may take to our medical team.
What I’m about to write might sound like a lost script from some soap opera or an episode of Casualty or Holby City. Come to think of it the producers would kill for a story line like this as it’s complicated enough.
The amount of people I’ve spoken to about what I’ve been through whether it be friends of those in the profession have all had similar reactions of disbelief and come to the same conclusion what I’ve been through shouldn’t have happened. It even led to one consultant describing what I’ve been through as the perfect storm.
Definition: A perfect storm is an expression that describes an event where a rare combination of circumstances will aggravate a situation drastically.
My name is George Rodgers I’m 50 years old, I’m mixed race and I’m HIV. In 2000 I started taking a combination therapy regime containing ddI. I was fine for four weeks then started suffering agonising abdominal pain. I stopped my HIV drugs and two days later the pain went away. But by that time the damage had been done.
Blood tests had made it clear I had had pancreatitis (inflammation of the pancreas). As I subsequently found, the ddI regime had turned someone with a family history of diabetes into someone with the condition and quite a severe form at that. It’s resulted in a long struggle (as late as July 2010) to find a HIV therapy that didn’t make things worse.
There is a third type of diabetes that exists, which is caused by toxic damage to the pancreas. Although the most common cause is alcohol use, some drugs can also cause it, including HIV drugs which is what happened to me.
I received different reactions to my pancreatitis from my HIV consultant and a diabetologist I subsequently saw. My HIV doctor said, “Your amylase is up by 25% and we normally only start worrying if they’re up 50%.” The diabetologists reaction was “It’s a good job you stopped when you did or you would have been dead”
I feel HIV physicians are overly focused on HIV and not given my diabetes sufficient attention. Repeated requests to be referred to a diabetes specialist have been met with some reluctance both at St Thomas’ Hospital and at Queen Elizabeth Hospital. I found out about the diabetic team at St Thomas via my GP and I had to use blackmail to get an appointment to see the diabetic team at Queen Elizabeth Hospital (more on that incident later).
The pancreatitis had scared me from taking HIV drugs and I went on a treatment break for 18 months. My diabetes at that time was manageable with diet and exercise. When I restarted, with a CD4 count of 150, I went on AZT/3TC (Combivir) and nevirapine, chosen with diabetes in mind and did well for 18 months. Then unfortunately in 2003 I became resistant to the nevirapine and got accused by my consultant that I wasn’t taking my medication properly.
After some chopping and changing I was eventually kept on the Combivir and switched to a boosted protease inhibitor Norvir, indinavir/ritonavir. My glucose levels suddenly doubled to 12mmols/l. I felt really unwell, with high glucose levels you feel kind of speedy. I got bad tempered and emotional, alternated between feeling hyper and exhausted.
When my sugar levels shot up I went back to my HIV doctor. He said, “It can’t be the meds it must be your diet” and didn’t propose any diabetes medications. Despite being reassured 18 months earlier that if the anti-virals did start affecting my diabetes there was something they could do about it.
Once again I found myself changing consultants and met with the same response despite both my partner and me at the time and my CPN explaining in full the reason why I was having problems with anti-virals. I even sent her a letter out lining the issues I had. But I met with the same blinkered attitude that I’ve had all the way through this from consultants. Doctor Lyons response was “I don’t see what your problem is!”
Different Hospital Same Attitude
Once again I found myself back at square one and after a long talk with my partner and hammering home the point that if things go wrong this time I will not be held responsible for my reaction. He convinced me to change hospitals and see the same consultant that he was under at Queen Elizabeth Hospital.
I went to Queen Elizabeth Hospital and met with the same kind of reaction despite the consultant there knowing the problems I had at St Thomas Hospital. When I raised concerns about the medication she was giving me and asked, “How is Kaletra lopinavir/ritonavir going to affect my diabetes?” She totally blanked the question telling me it was down to my GP to sort my diabetes out.
Knowing full well that my GP doesn’t know anything about HIV medication I had no choice but to stay of medication. Not only that I wasn’t too sure how my G P’s reaction would be to treating someone who is HIV as I had just transferred to a doctors surgery that was closer to home. Not only that all this was starting to have an effect on my relationship as my partner couldn’t understand why I was having problems with Dr. Mitchell when his treatment and care was going so well.
The answer to that is his medication didn’t trigger of pancreatitis and leave him with diabetes type II. On several occasions he accused me of asking for too much and even went as far as accusing me that I was giving the consultant enough time to know me.
The consultant involved would have gotten to know me if she had had the decency to listen to what I was saying and not be so blinkered in her attitude and listened to my concerns. For 3 months I was telling her the concerns I was having about the medication she was going to give me. I only asked what anybody else would ask in that situation. Not only that she knew what I had been through at St Thomas’ because my partner had kept her informed, it wasn’t like I was going in as a cold case.
In the end I stopped seeing the consultant and I ended up moving out of my own home because I couldn’t get my partner to understand why I was reluctant to go back on anti-virals without my question being answered and precautions being put in place. I was taking this stand just as much for his benefit as mine, I saw the look on his face of sheer terror when I was doubled in agony when I got pancreatitis.
I moved back home just before Christmas 2007 and I made an appointment for the both of us to go and see a psychologist at Queen Elizabeth Hospital as I needed my partner to understand why I was so reluctant to go back on medication and why he needed to back off.
That went well, he backed off and I ended up getting the therapy sessions which lasted three weeks after I got a lecture in regards to the fact that I needed to be an A1 patient when it comes to taking anti-virals. My response to that was I’ll be an A1 patient when I get an A1 doctor and never went back after that.
It was roughly around this time that I went for hypnotherapy to try and get over how angry I was with what happened at St Thomas’s. I was told that I should take the anger down a level to just being annoyed and that doctors aren’t infallible they make mistakes and it seemed to work until I hit the same brick wall when I was at Queen Elizabeth Hospital.
I did take one piece of advice from that therapy session and that was to write down what I was feeling or what I needed from my consultant and so in June 2008 I wrote a letter to the consultant agreeing to go back on medication, by this time my CD4 was down to 29. I was given two choices I could start on a lower dose, something I asked for two years previously when I first transferred to Queen Elizabeth and was told no, or hit it hard by going on a higher dose.
After a talk with the adherence nurse specialist and feeling comfortable after being reassured that if I had any problems with my medication I should hesitate to ring the hospital I opted for the higher dose but after three days of being on it I was suffering from some serious side effects. I rang the adherence nurse specialist and the response I got was, “This doesn’t happen to other patients” and had the phone put down on me. This was after explaining to her that I had previously been diagnosed with pancreatitis. Once again I had no choice but to stop medication.
The consultant’s response was no better when I saw her a week later. I was accused that maybe it could be psychological. There was nothing psychological about my sugar levels going into double figures, my metabolism going ten to the dozen and being sick two minutes after taking medication, I was bringing up bile and two minutes after eating my breakfast I was really hungry again. But it fell on deaf ears and so I ended up using blackmail and refused to go back on meds until I had spoken to someone from the diabetic team. I did see the diabetologist there, that’s was the very first time someone actually told me my diabetes was due to drug induced pancreatitis. The diabetologist also informed my consultant that I was right to be concerned the effects anti-virals have on my diabetes, as left unchecked diabetes is just as deadly as HIV if left unchecked.
Up until October 2009 I thought I was a so called unique case, I was even prepared to let go of my anger as I was transferring my medical care back to St Thomas’ (a consultant there had heard the problems I was having, he had read the article I did for NAM and had agreed to see me).
Then I broke out in shingles that’s how stressed out I had been about the whole thing, the doctor explained to me why I might be having trouble with certain medication and it’s all down to my genetics and something called micro toxicity. Thinking that this was something new I did a Google search and found out that this information has been around as late as 1999. Along with articles on HIV related diabetes: A Complex Interaction between liver damage body mass and genetics” and was reported by NAM way back in 2004.
I have had to go through hell and back with no proper support to get to where I am now. Not only has this had an effect on my health it also affected me on an emotional level and it had an effect on my relationship with my partner as we split up after eleven years. I don’t normally get violent but because of all the stress I was under g it was having an effect on my adrenaline levels which as we found out was having an effect on my sugar levels and because my partner was defending the consultant I was seeing as he hadn’t had any problems with her we ended up arguing and I got to the point that I actually went for him.
The first time I went for him was New Year’s Day 2010, we had had an argument the night before over the TV, there was more to it than that but that was the final straw and on New Year’s Day I just went for him. The only reason I stopped was because I was going to hit him over the head with a chair and so I walked out the house. The only trouble I was so pumped up that if anybody had said a cross words to me I would have gone for them.
The second time I went for him I nearly put his head through the bedroom floor and the only reason I stopped was because he bit me and that’s when we realised something was wrong. In the eleven years we had been together I had never got violent towards him. This was no ordinary case of domestic violence it wasn’t until the third time I went for him I managed to pick up a chair in one hand turn it round and ended up pin his head against the wall. That’s when I ended up doing a search on the Internet and I came across the effects of adrenaline on diabetics.
Adrenaline is a chemical that is produced by the body when it thinks it is under attack that is why you get adrenaline junkies because the rush can leave you feeling high. Stress can also cause adrenaline to rise the only trouble is adrenaline cannot tell the difference between a diabetic and a non-diabetic and that’s where the problems start and what was even scarier about the whole none of the professionals took any notice despite a community psychiatric nurse visiting our home and she must have notice the damage that had been done. It wasn’t until I rang the hospital and told my consultant at the time that I was getting violent that anyone intervened but as usual it was too little too late and that was when I made one of the toughest decisions of my life and after eleven years of being together I called time on our relationship because I didn’t trust myself when it came to my outbursts of anger.
How My Past Helped Me Through
When I first became HIV I ended up going for counselling. It wasn’t just about dealing with HIV it also helped me get over my low self-esteem caused by what I went through with my parents when I was younger.
My adoptive mother was warned about taking a mixed raced baby into a white family as there could be problems. And oh boy were they right, I could understand being picked on at school because of my colour but to have to go home and face it especially off my younger brother and no one done anything about it.
One of the questions I was asked was why didn’t I get angry at my parents for the way they treated me and my response was no matter how bad things are you always respect your elders and that’s how I saw doctors.
I was taught how to do the circle in cognitive therapy, I tried applying it to the situation I was in with doctors but it didn’t seem to work or so I thought because I found myself comparing to what I was going through with what I went through when I was younger.
My birth mother gave me up for adoption because she thought I would have a better life my adoptive mother was given that trust to look out for me and she didn’t she buried her head in the sand and I ended up suffering because of it.
The same thing happened here I was told that I could trust Dr Bubu, I was also told I could trust Dr Mitchell instead I got the exact opposite but instead of bottling things up I fought back and in some strange way I found the strength to do that by confronting my past.
And as hard as it was remembering what I went through when I was younger it helped me fight back and I did it on my own.
And The Fight Continues
It’s like the other day I received a Depression Scale form through the post because I’ve been prescribed antidepressants. I ticked all the relevant boxes then after reading through it I realised that all the questions asked how you are feeling yet there wasn’t a question on why you feel that way.
The reason I’m feeling the way I am isn’t because I’m depressed or the fact that I’m living with two chronic illnesses I’m feeling this way because the NHS let me down and put my life at risk. Not only that the damage that has been caused some of it is irreversible. At times I feel like I’ve gone through a car crash, at least if I had been in a car crash people could see the trauma that’s been caused and I would get the support that I need to get my life back on track. Instead I’ve had to do it on my own. Not only that the lack of consistency in my care doesn’t help either, if I can’t get the ‘professionals’ to understand just because we are diabetic we are still individuals and what works for one person it doesn’t necessarily mean it’s going to work for everyone else.
The ‘professionals’ can’t even agree on what our sugar levels are at or what diet we should be following. Here are two good examples. When I first become diabetic I was told by my diabetic nurse that my sugar levels should be slightly higher that someone who isn’t HIV because my body is working overtime because of the anti-virals, I was also given this advice last year by one the diabetic doctors at St Thomas’ Hospital. I tried telling this to one of the consultants at the hospital and he wouldn’t have it despite the fact that I become Mr Hyde when my sugar levels fall below 5 and as usual I got the same old crap that it’s just my body adjusting to the lower levels.
Try telling that to a policeman when I get arrested for thumping a complete stranger in the face because their baby was crying. “Oh excuse me officer I was having a hypo!” I haven’t actually done it but I came close to it the other day though when I was on my way home from my friends’ house.
I was on the 188 everything was fine, was in a nice relaxed mood. Then someone got on the bus with a baby and half way through the journey it started crying normally I would just ignore it but the more it kept on crying the more agitated I got, then someone started talking on the phone and the noise just seemed to have intensified and I just wanted to tell everyone to shut the fuck up. When I got home my sugar levels were 4.5, I wouldn’t have minded so much if hadn’t been for the fact that for breakfast I had two slices of toast, two boiled eggs and a bowl of cereal.
The other example is how the ‘professionals’ can’t seem to agree which diet to follow either everyone in the profession has been saying we should be eating plenty of carbohydrates, now the only problem with that is eating to many carbohydrates as recommend by the NHS and the government would be like drinking six cans of coke and the consequences of that leads to high sugar levels as I found out the other day. Wanting something to snack on I decided to go for a healthy option and brought a packet of those Ryvita Thins that they have been advertising on the television recently. Not giving it a second thought I started eating them as I was working on this before I knew it I had gone through a whole packet. Half an hour later I felt drunk, I did my bloods and my sugar levels had shot up to 17. I ended up falling asleep and my friend had to put me to bed as I was so disorientated. It took me two days to get over that.
Now some in the profession are saying we should be following a low card diet, which makes more sense and though it makes more sense so yet again the goal post have been changed.
Getting Family and Friends to Understand
One of the questions on the form asks do have thoughts that you would be better off dead, my answer is yes I do and it’s not because I feel depressed it’s because I’m having to deal with an illness where the goal post are constantly changing and I wouldn’t mind if it didn’t have to involve family and friends.
It’s bad enough having to get your family and friends why you have bad mood swings the worst one is when you find yourself becoming introverted and switching off from everything despite explaining it to those close to you whether it be friends, family or partners well in advance that you do get days like that they still find it uncomfortable like they have done something wrong which becomes frustrating for the diabetic as it ends up making them feeling bad.
No Pressure Then
Part of the reason a someone with a chronic illness finds themselves wanting to switch of is because the whole thing can leave you warn out and there is nothing you can do about it because you don’t know when it is going to happen. So imagine what it’s like living with two!
It’s like a friend of mine he does shift work and he can’t understand why I’m so tired all the time despite me trying to explain the reasons why. The reason I get tired so much is because my internal organs are on constant overdrive and as much as I try to live a normal live there are times through no fault of my own when having two chronic illnesses to deal with is going to take its toll no matter how good you are at managing things, the only trouble is you don’t know when it’s going to happen.
Another problem with all of this is the constant pressure we are under to get our sugar levels below a certain figure we are under pressure to keep fit. I have come to realise that I don’t have the same energy levels that I did when I was first diagnosed with diabetes, it’s all right for someone to sit there and say “we should be doing 30 minutes of exercise a day but it’s not always possible and we shouldn’t end up feeling guilty because we aren’t well or the weather is to hot or too cold.
Making A Change
There’s a strong sense of feeling that we are being treated like guinea pigs, HIV medication may be keeping us alive but it’s causing other problems as well and there seems to be no back up when situations like these arise.
I can’t change the past; once again I’ve got to live with the damage that has been done not only on a physical level but on a psychological level as well, for the past twelve years I’ve felt like I’ve been on an emotional roller coaster ride and though I’m in a better place now, I have a very good consultant and a very good diabetic nurse, (they both communicate with each other and take on board what I say and I’m not expecting them to have all the answers)..
I’m also beginning to realize that the one size fits all attitudes doesn’t only apply to HIV it seems to apply to diabetes as well and that isn’t good for the patient especially when they have two chronic illness to cope with. Some good has come out of this in knowing that I wasn’t asking for too much and I have a letter from an MP to back me up.
Taking an Holistic Approach
In the last decade the government and the NHS have been promoting a ‘patient-centred approach’ to health care which encourages ‘expert patients’, previous experience has shown that some healthcare professionals are unable or unwilling to deal with patients that do their own research and come to consultations with more information and questions than the ‘professionals’ can deal with. Rather than collaborating with the patient and help them set up a link with the different specialists we end up being bounced around from one doctor to another and none of them have a clear understanding of all the patient’s conditions and how they (and the medication that treats them) might impact upon each.
It’s no good getting the healthcare professionals to take a more centred approach if the various support services don’t take a more holistic approach to the service users that access their services. Not everyone who wants counselling has issues around family, sexuality or drug use and I’m a good example.
My issues centre on what I’ve been through and the damage it’s caused some of it irreversible:
- I feel like I’ve been on a non-stop roller coaster ride these past twelve years.
- At times I felt like I’ve been in a game of Russian roulette and I wasn’t the one holding the gun.
- I feel like I’ve been robbed of something and that is time.
- I feel like Humpty Dumpty who’s fell of the wall and I’m having difficulty putting the pieces back together again.
- And on top of everything else there’s a sense of guilt.