Frustration reigns supreme

I hate having to go to the local hospital and the universe has not been on my side lately because

I hate having to go to the local hospital and the universe has not been on my side lately because I have taken Mum there three times in the past two weeks, her recent scans and bloods showed Paget’s Disease and Fibrous Dysplasia of the skull and even with that knowledge the doctor still pushed for her to see an endocrinologist, even though she has no pain and to be honest at 92 with a brain tumour and aneurysm, dementia, arrhythmia, arthritis, I didn’t want her to get on what would no doubt be a medical merry-go-round.

I was completely awash with emotions when we walked through the entry doors and I could feel the panic setting in, I went into the Ladies’ Room and did some deep breathing. Then, I put my big girl knickers on and went back to accompany Mum into her appointment. I know that when you get something uncommon at an advanced age, the medical profession more often than not sees it as an opportunity to investigate the ins and outs of a duck’s bum, and then if possible get the name of the duck.

I do not want Mum becoming a human guinea pig for future generations, and when I voiced those opinions to the doctor he was not terribly impressed. It is standard procedure I was told, but I am very much a realist, maybe because of the life I have had, or maybe because I have had my own mortality put on the table more than once and all because of mistakes made by the medical profession.

They don’t want to hear the facts, like when Mum is taken out of her routine it does not help her dementia; it does nothing more than add unnecessary confusion and I don’t see the point in adding to it especially when only to benefit the doctor’s inquisitive nature. He ordered a bone scan for the following day which she had. For what? Because the doctors thought it would be interesting to see if it was anywhere else in her body.

We have to go back and get the results next week. He then wants more blood work done to test Vitamin D and Calcium levels so he can start her on infusions of bio-phosphonates. I asked about side effects, I got ignored. I asked if it was true the bio-phosphonates take months to work,I got ignored. I asked, “What’ the point when Mum has no pain?”, I got ignored. I asked “Could it have a negative effect on her brain tumor or her dementia?”, I got ignored.

When we went back for all of the results, the doctor showed us the actual scan. There is a hot spot on the skull bone behind the blind eye. They now think it could be cancer, so they gave Mum 3 options. To have more radiation, to have an infusion of bio-phosphonates, or to do nothing. I was hoping she would take Option 3 and keep doing what she enjoys instead of dealing with endless side effects; but she chose Option 2.

Her choice but, an acid-based infusion into a 92-year-old body is not a good idea. Personally, I don’t think they have a clue, I think they are guessing, a lot of the medical profession don’t know their backsides from their elbows.

Have you felt the same way as Christine?

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  1. As I have commented on Drs before, I have been grateful for antibiotics that I have taken for lung disease, since aged 2. That has saved my life, albeit over the past 9 years I have had a terrible time with the medical profession. In 2007, doing the best for my lungs, I undertook an exercise class with a little dancing involved and because of a slippery floor, took a fall and fractured my hip. Rushed to hospital, I was informed they would pin and plate it by an emergency Dr, because all orthopaedics were missing on conferences or holidays. So, even though I was in a health fund, andI was prepared to wait until a Dr I knew would return, they insisted on operating. Complete disaster, formed necrosis and a metal hip put in 3 months later. Still in pain and not walking well, 12 months later, they the Drs decided on the basis of 1 scan alone that the hip was infected, and the rest of the drama began. A replacement hip was put in, and whilst doing this, they cut muscles, and I am now left wth an total hip replacement failure after 5 operations , over 5 years. Also, at the time, the anaesthetist completely took no notice of my red alert bracelet allergic to fentanol and all opiates, and an allergic reaction occurred during the operation, and incidentally my notes went missing for 3 years from the hospital, have since been found. There was no evidence at all of infection by the way in the hip, at the time of the replacement, however now, there is stress shielding, making it difficult to walk. Having worked for Drs for 40 years, there are some that are a little worse than others.

    • Leone O'Sullivan  

      Janice. I’m so sorry you got such a run-around. Those surgery results are disgraceful.
      I think I’ll stick to my guns regarding treatments (Apart from being fat there’s nothing wrong with me) but I do know what a doctor’s “superior look” is and I’ll try to ignore it and go with my gut feeling. A second opinion is worthwhile before any surgery.

  2. Pamela  

    Prior to her recent death aged 94, my mum had Pagets Disease for about 15 years, however it was controlled with medication and did not develop past diagnosis. It was in her leg, but it can be anywhere in the body including the skull. It causes bone to grow fast and weak, causing deformities if not controlled.

  3. Leone O'Sullivan  

    Christine – I agree with you absolutely. They don’t look at a person’s life. Just a the tiny bit that you’re asking about and treat that tiny bit as more important than the entire rest of your life.

  4. Earlier this year my 89 year-old mother got a urinary tract infection and she also had low sodium. Both affected how she felt mentally. She is already showing some early signs of dementia. She has quite bad arthritis in her knees and ankles, so has limited mobility. Her blood tests showed that she had slightly elevated cholesterol, so much to my horror she was prescribed a statin in the hospital.

    The side affects of statins can be memory loss, body aches and other risks. And it has yet to be proven that high cholesterol is life threatening, especially for a 89 year-old female. In fact, research shows that women live longer if they have high cholesterol, rather than low.

    I complained to Mum’s normal doctor, and he just said that she can elect to not take the statins. He agreed with me.

    One book I read recently quoted a doctor as saying: “If you want a long healthy life, the do two things – don’t fall over, and avoid doctors”. For me, disease prevention from an early age is a much better strategy, and follow more of the hunter-gatherer diets – the opposite to the dietary guidelines. They never got our modern diseases until colonial governments started to feed them flour and sugar. That has been common all over the world.

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