Just Another One of ‘Those Days’!

My apologies for not getting back to anyone I owe a reply to, please feel free to remind me, the last couple of weeks have consisted of doctors, radiology, blood tests, pain and no sleep, so I have been very slack. I have been watching with keen interest what has been going on and sincerely hope that Paige is getting the assistance and recognition that she deserves! As we all do from time to time, I have taken a step back so that I could try to get my body together, unfortunately I haven’t won that one yet!!

I am sure that many of you will relate to the following scenario, but I just wanted to write about it as I am still adding it to my list of ‘firsts’ since my “ASR experience” began. In the last 3 months I have experienced more pain and decline in my health then I have for the last 6 years, and all this after I had supposedly undergone the ‘this will finally sort you out surgeries’. I am in no way being critical of my surgeon here, he has worked tirelessly in finding answers to the many complications I have faced and I retain complete faith in him. I have a fracture in my right femur (ASR Hip side) that has now been present for 18 months, despite the plate and 9 screws holding my femur together, it has decided to appear on x-ray at least to be breaking down completely, I can certainly back that up in pain and inability to weight bear! When presented with this evidence and the appearance on Bone Scans of fractures bilaterally (left and right) in both my feet, my left shoulder and also potentially in my lumbar spine, my surgeon thought it was time to seek opinion from further experts as to why my femur is degenerating and why these new fractures might be coming from. Against the background of Cobalt/Chromium toxicity and multiple hip revisions (3), my surgeon decided we needed to look at things from a ‘biological level’ and referred me to a colleague who is an Endocrinologist and experienced researcher.

 

This was the start of one of ‘those days’! My wife and I, after waiting the usual couple of months to get in to see this doctor (and I appreciate that we got in quickly for those of you who have had to wait much longer for medical review), entered the waiting room with a great deal of trepidation. We were called, introduced to the doctor and escorted to the consulting room. After being seated the following statement was made: “I can see you are in pain, but I see a very depressed man sitting in front of me, are you talking to someone about this”. Then turning to my wife: “I can see you are depressed too, you should be talking to someone about this”. So it began. This was our first interaction with this doctor ever, to say we were taken aback was an understatement. We had gone there seeking answers to why my health/body was deteriorating so quickly and as my wife says “I am watching my husband deteriorate in front of my eyes”, this was not what we had expected to be hearing.

We were then given a lecture about ‘our need’ to be getting psychological/psychiatric help, and that Anti-depressants mightn’t be a bad idea. It was then pointed out to me that I was ‘obese’ and that I needed to address this. I had let her go on the first part about our Mental Health thinking that she was trying to help, however I now was starting to see red as we hadn’t so much as mentioned why we there in the first place which was to try to find some answers as to why my bones are breaking and the one that is really broken isn’t healing. The ‘fresh set of eyes’ that was to review my case was now just irritating me! I was then advised that I should stop being lazy and just go to Weight Watchers so that I could do something about my Obesity! If I wasn’t depressed when I walked in the door I was now!! I was also starting to get that burning feeling of anger and resentment that I know so many of you have experienced through your dealings with medical professionals over your journeys.

We finally actually started talking about ‘how it was that I came to be in this situation’, at this point I was almost relieved to be talking about bloody hip replacements!! However I naively expected that she may have read some of the 20 odd pages of notes that my surgeon sent with my referral and referred to my Johnson and Johnson/DePuy implant merely as an “ASR”. She stopped me immediately and said, “what is an ASR?” We should have stood up and left, but stupidly we stayed on, and with much reminding me that she wasn’t an ‘Orthopod’ and not really interested in the surgical side of things, we eventually got up to what medications I was taking. Earlier in the discussion her thoughts had varied between me being on ‘too much’ pain relief, to ‘that is probably nowhere near enough’, so now we were discussing the merits of me visiting a ‘pain clinic’, but even she then admitted that they probably wouldn’t be able to help as they wouldn’t understand or know how to treat this kind of ‘experience’ or pain process.  I was also asked to explain ‘why I was taking these medications’, when I replied that they had been prescribed and that I was merely following Doctor’s instructions, I was told that I should have taken control of this and ‘known better’. Now I am a mere Nurse, I know we are all probably far more knowledgeable about our conditions than most of the doctors we speak to, but even I have to stop short of prescribing and planning my own medication routine! I feel sorry for those of you out there with no formal medical education, I wonder what she would have said to you?

 

Continuing in the medication, I mentioned that I take a number of natural medicines (Fish/Krill Oil, Rose Hip Extract, Glucosamine, Chondroitin, Boron etc), I was asked how much I spend on these a month? I replied about $300. I was then told I would be far better off spending that on Weight Watchers for all the good it was doing me! After completing the medication review, we finally pulled out some of the scans and x-rays I had brought along for a casual glance. When she noticed the difference of over 10 cms (approx. 3 inches) in my femur fracture in roughly a month, she thought that I had got the dates wrong as this wasn’t possible. Adding the x-rays of my fractures in both feet, I was then asked if I had been in a car accident? I pointed out that no, I hadn’t, and then she said that I must have had a fall. When this was not also true, the gravity of what she was looking at must have finally sunk in as she offered my wife a tissue (Karrin wanted to belt her over the head with the box I found out later)!

The next part of the appointment was almost ‘humane’ as she empathised with us that this was indeed a truly ‘unique set of circumstances’ in her experience. I was told that I should be in a wheelchair as ‘what am I trying to prove by walking around in pain’, I did point out that I had actually been asked to try to walk by my surgeon. This was followed up by more contradictory comments about my ‘pain threshold’ and we were nearing the end of our time together!

The things I was to take away from the appointment was that even though I had gone there looking for answers, I should realise I probably won’t get any, I should start at Weight Watchers as soon as possible ‘as it is plain that you are obese’, I needed to see a Psychologist at least ‘to help me cope’, I should stop trying to be a hero by trying to walk, my wife was also to seek Mental Health guidance as I was obviously putting her ‘through a lot’ and I should learn to ‘get over my anger with Johnson and Johnson’ as that isn’t going to help me get any better (needless to say at this point in time I firmly believed that no-one else apart from my family and I were going to help me ‘get better’)!! We are to return in 6 weeks’ time when she will have done ‘some looking into all this’, spoken to the many doctors who have treated me over the journey (all of which she seemed to know very well according to her), reviewed all of my blood tests, x-rays, scans etc. and she will have a report for us.

Needless to say I am not holding my breath, I am more determined than ever that we all have to look after ourselves as even ‘the experts’ seem to treat us all as either a: ‘broken puzzle’, ‘a novelty’ or just a ‘pain in their arse’!! I wanted to talk about this appointment as I have spoken to so many people who have had shocking experiences with Doctors and other health professionals that I just wanted to re-assure you that you weren’t on your own. I also think that this is also a very good therapy for my ‘depression’, as it allows me to vent, express and share, things which unfortunately most poor souls who suffer from depression rarely get to do and please don’t think I am in any way diminishing the terrible impact that depression has on many of our lives as we go through this horrible experience called Metal-on-Metal. Indeed I encourage any of you who are currently, have previously or are not quite sure if depression is in your life, to please reach out and talk to someone about it as I believe we are all going through enough torture without adding that type of torture to the mix. As this doctor finally said to us, “if I was in your shoes, I would probably be depressed”, not much relief at the time, but after what she had just put us through it was almost a sense of vindication.

I wish all of you the best of health at this time, I am getting away with my wife for a short break where we can’t be disturbed and just have a nice waterway to watch and can do a bit of fishing. I hope that no matter whether you are battling Johnson and Johnson/DePuy, Smith and Nephew, another manufacturer or just the failings of your own health, that you are supported and loved by those around you, because I know that without this blessing I wouldn’t be here. I keep hoping that it can’t get any worse, but sadly I don’t think I have hit bottom yet, I just need to be able to hope. To Earl, Brooks, Howard, Meg, the 2 Connies, Belinda, Mary, Paige, Morgan and all of the other wonderful people I have had the pleasure of meeting here, I hope your days are reasonably comfortable, you are ‘getting better’ and for all of us that there is some justice just around the corner!

 

Take Care

Stu Cain

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