More on Addison’s Disease…

As you might have read, Addison’s was diagnosed a year ago this month but, hey, here’s a fun fact – nobody bothered to tell me!

I recently figured it out and wrote to my GP (broken link to NICE fixed), requesting that he confirm the diagnosis, as I had received no support or information from him or anybody else during the past year. That was on the 20th – today I got a reply (apparently he’s been on holiday and, of course, no-one had the brains to tell me).

He confirms I have Addison’s – not that I had any doubt, but that matters, as you’ll see  – and says that APH didn’t tell him, either. He’s increased my hydrocortisone (hydro from here on), script.  Don’t know what to, he doesn’t say. We’ll see.

In the meantime I can take antibiotics to treat my leg injury (I have to double my hydro dose if I take antibiotics now – that’s obviously why they made me so ill last year – I didn’t know that).

What he hasn’t done is prescribe injectable hydro, so I’ve got to chase that up. In the event of an Addison’s crisis (if, for example, I get a stomach bug and can’t take my hydro tabs cos I’m puking), self-injection is essential – I could die waiting for an ambulance (last emergency call for one, it took 2 hours to arrive. However, I can now register my Addison’s status with the ambulance service, so that should change).

One of the nuggets of information I recently came across was that I must NEVER stop taking my hydro, which leaves me with a problem. Hydro causes gastric irritation and can lead to a gastric bleed which, if it hits an artery, could kill me in minutes. Several times, when the pain has kicked in, I’ve stopped the hydro (not having been told not to!), which could also have killed, or at least seriously harmed, me. Obviously it didn’t, but that is no excuse for keeping me ignorant of the dangers.

Still, something had to be done to address the risks of a gastric bleed while continuing to take my hydro (and now I know how critical it is, its use has increased**). My solution, so far, on a day like yesterday, when I took both my normal intake of hydro plus an additional 30mg because of the stress of badly injuring my right leg; a bump which, to a normal person would have been just annoying, being much more seriously damaging with lymphoedema.  With a total of 60mg of hydro in my system I expected stomach pain, so with the final dose of 20mg I dropped a 300g pot of full-fat cottage cheese on top of it (6% fat, not your wussy 1%  – fat is soothing). Result, no pain.

**It seems that, with Addison’s, almost anything can over-stress the body, needing hydro to safely calm things down again. For example, since the mid 50s, antibiotics have pretty much kept me alive without much in the way of  problems but, last year, being fed vast amounts to try to control the rampant infections in my lymphoedema-trashed legs, every course made me profoundly ill (as did the ultimate 10-day course of i-v Vancomycin in hospital in November, on top of which almost every accessible vein was wrecked, adding to the stress). I know now that my hydro should have been increased to enable my body to deal with the impact of the drugs and the fuck-uppery – and it wasn’t.

But back to the present, and I didn’t get away entirely unscathed, as I did have some stomach pain the following day, which I fed with more cottage cheese (the calcium and salt will also benefit me). Pain went away.

If, by the way, you want really good full-fat cottage cheese, look for the Longley Farm product (Sainsbury’s and Asda are the only stockists I know; Tesco do an o-b full-fat cottage cheese – it’s disgusting!).

I’m also, right now, having a COPD flare-up. This needs aggressive antibiotic treatment (1g Amoxicillin every 8 hours), but now, of course, that has to be supported with additional hydro at twice the normal dose, according to NICE. I can now tackle that in safety, too.

On the subject of morphine, I’ve proven, to my own satisfaction at least, that it was NOT responsible for my recent respiratory crises. After injuring my right leg, I was in terrible pain, and I maxed out both Zomorph and Oramorph.

In fact I took 40ml of Oramorph in 4 doses (the prescribed dose of 5ml being utterly useless). No problems at all – not so much as an out-of-place wheeze. So much for his tale of how taking that much will cause respiratory suppression and kill me in my sleep.** (GP prescribes 5ml every 6 hours, which has zero effect – it’s a child’s dose  – told him, he won’t listen so I take what I need on the basis of what I don’t tell him he can’t bitch and whine about; anyway, in hospital the first thing they did was increase the dose to 10ml – no problems there, either).

**Frankly, I wouldn’t care overmuch if it did – my life sucks to the max. And if all the future has to offer is even more unmedicated pain then I don’t want to be here for it. I’ve not had a single pain-free day in over 30 years – barely a pain-free hour – and now I’m forced to endure far more pain than I can stand thanks to my doctor.

I have had enough.

 

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16 thoughts on “More on Addison’s Disease…

    • Yep – been taking PPIs for about 23 years – currently Omeprazole (because it’s cheap and so is my GP!), 20mg with meds at 06.00, including 20mg hydro (plus another 10mg hydro lunchtime), then 20mg Omeprazole at bedtime for GERD protection.

      Gastric risk from hydro is apparently very low (though not with my history), 20mg hydro, for example, equals just 5mg Prednisolone – still get pain though so not convinced. Not had an actual bleed so far, though.

  1. Hey Ron. I have been reading your blog for a couple of months now since I stumbled upon it while searching for information about lymphoedema. I am so sorry that you have to continue to deal with so much pain on a daily basis and haven’t had the best treatment from your doctors. It breaks my heart, especially since my dad has basically been going through the same thing with his legs and poor medical treatment for about the last year and a half or so. Unfortunately for my dad, things are not looking so good right now. Not only does he have issues with his heart, but his kidneys are in bad shape, which means his body can’t really fight off the infections in his legs. Now he has suffered a stroke, which was my worst fear. I know it is probably the last thing you want to think about, but if you had a stroke given all the other conditions you have, would you want to try to recover from it if you had the chance? My dad may be going to a skilled nursing facility for stroke rehabilitation, but given all the pre-existing conditions he has, much like yourself, do you think it will actually be worth his time to go? Do you think he actually wants to go through rehabilitation or will try his hardest to get better during rehabilitation, given all his medical problems and knowing what his quality of life is most likely going to be like heading forward? I wonder what he is thinking deep down inside about this issue everyday.

    Anyway, I just wanted to say keep up the good work on this blog. I greatly enjoy reading the posts on it. I only wish my dad had taken the approach you did and gave up getting his legs compression bandaged. I’m convinced he might be in better shape right now if he did, since getting his legs wrapped didn’t seem to help at all. In fact, getting his legs wrapped probably made things worse than they had to be otherwise and cost a ton of money in the process.

    Take Care,
    Kristen

    • Hi Kristen,

      I really don’t understand the obsession with compression. My experience proves that healing can take place without it. OK, it meant a lot of work for me, debriding, washing, and disinfecting both legs every day for months, but the important thing is – especially when the hospital took a hand and specified the silver-impregnated dressings – it paid off. Did you see the pics of my legs in November compared to how they are now?
      https://ronsrants.wordpress.com/2014/01/23/an-image-from-the-past/

      As for stroke rehab, I think it’s an excellent idea. My personal choice would be not to survive a stroke, but if I did, and there was a chance for recovery, I’d take it. What terrifies me is that I might be stuck in vegetable limbo, unable to recover and unable to pull the plug.

  2. Thanks for responding to my previous post. Yeah, I saw some pictures of your legs while reading some old posts on here. I almost felt like I was looking at my dad’s legs when I saw them. As I mentioned, he’s been dealing with almost the exact same condition for about a year and a half now. Believe me when I say I am so happy for you that your legs are in much better shape than they were. You are very fortunate. As I explained in my previous post, my dad has not been so fortunate with the infections in his legs clearing up. And given the condition of his kidneys, I am not so sure his legs would have healed even if he took the approach that you took. Still, I do wonder if his doctors/nurses had made the suggestion that your doctors/nurses made if the condition of his legs would have improved at least slightly more. I know getting his legs wrapped has been very bad for his toes, for example, because the lymphatic fluid accumulates in between them when he gets his legs wrapped and it eats away at the skin. To prevent further infection, the doctors/nurses advise him to put really strong medicine on his toes. The medicine hurts his toes so badly that he ends up writhing in pain complaining that someone is jabbing his toes with a knife. It is just horrible for him to have to deal with and having to watch him suffer through. And he really isn’t able to take any painkillers for the pain because of his kidneys. Now I am not sure what is going to happen with my dad’s legs heading forward, since I brought up that he had a stroke. I guess it will be interesting to find out what the doctors decide. Ironically enough, my mom thinks that his legs are actually looking better than they had been looking prior to his latest hospital stay. And shock of shock, his legs haven’t been compression bandaged since he has been in the hospital.

    Regarding my dad’s stroke, he claimed to me when I saw him that he has the resolve to fight through it. So I hope if he ends up in a facility for stroke rehabilitation that he will give it his all to improve as much as he can despite the fact that even if he does, his quality of life might be worse than it had been. At this point, I just want to see him get as well as he possibly can especially after all that he has had to deal with over the last few years. And I pray that you never suffer a stroke after all that you have been through. I was just bringing up a hypothetical situation and wondered what your feelings would be about having to go through something like that, since I know you have dealt with some of the same medical conditions that my dad has had to deal with and I know how incredibly tough and painful it must have been for you to overcome some of those health problems and how difficult it must continue to be for you to have to deal with all the issues you still have with your health. Also, sorry for the long post, but I feel like you are one of the only other people out there who probably understands what my dad is unfortunately going through and what I have had to go through watching him struggle with the ailment that he has. It has been heartbreaking. And my heart breaks for you, too.

    Anyway, keep up the good work on this blog. I greatly enjoy reading your posts. Oh and on a side note, the fact that your legs actually healed as much as they did gives me at least a little bit of hope that maybe my dad’s legs can finally get better as well with the right treatment. Plus, you inspire me. I know it is not easy for you to have to deal with all the medical problems that you have. But, you still keep finding a way to battle through them. I am not sure I would be nearly as strong if I had some of the problems with my health that you have experienced/continue to be plagued with. So I really commend you for that.

    Take Care Once Again,
    Kristen

    • Lymphoedema infections are very hard to treat. Based on my own experience, oral antibiotics simply don’t work. Eventually, in November last year, it took 10 days and about 6 litres** of intravenous Vancomycin to knock out my infections which, at that point, included MRSA.

      **I know I’ve said 3.5 litres in the past, I really don’t know where I got that, as it was actually 250ml three times a day for 10 days, but for several days they ran out! 6 litres, then, is a guess, but a more accurate one.

      It’s my view, too, that actively leaking lymphoedema should never be compressed, because of the corrosive effects of lymphatic fluid. The best normal dressings by a country mile are Flivasorb, as they draw the fluid away from the skin, keeping it dry. Same technology as disposable diapers but vastly more expensive. They cost £45 a day for mine – $74. My GP refused to pay so I became the guinea-pig for trials of a new dressing, Zetuvit Plus. Cheap, and almost as good as Flivasorb and now rolled out to everybody. Problem is, they’re bulky. Add that to the swelling and I spent most of the last year wearing shorts, only getting back into trousers a couple of months ago (now progressed to socks and boots, but walking even a few yards wipes me out, so still using my chairs (powerchair at home, manual chair if I go out).

      A question for your dad’s doctors – can they find him an analgesic that is excreted via the bowels, or metabolised to harmlessness by the liver, not excreted via the kidneys? The pain of lymphoedema is terrifying (worse, as I know from experience, than the pain of a coronary), and it never lets up for a moment. It’s pushed me to the brink of suicide more than once. For me, only morphine works, but that’s excreted via the kidneys.

      The purpose of my blog – apart from the political stuff – is simply to pass on what I know, and have learned, to others – knowledge has little value if not shared. Oddly enough, though, it’s my posts about food that seem to get the most attention these days, especially in the US.

      Some people seem to think that because it’s called Ron’s Rants I’m perpetually angry, but I’m not (people have actually complained that I haven’t been angry enough – can’t please everybody!). I just needed a short, snappy title (I already had a website called Ron’s Realm, which was an extension of a magazine column I wrote for the ME Association), and, at the time, there was just one website with a similar title – but now there’s loads! And to fit in with my “corporate image!” my Twitter account is @rantsfromron

      Take it easy, Kristen, and try not to worry about things outside your control.

      Ron

  3. GP has sent script for injectable hydro to pharmacy – reception phoned today to tell me. Just need my hypo kit now. He seems to be taking this very seriously – just how much trouble am I in?

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