Tuesday, September 18, 2018

Kayak Man

He went fishing this way while he was here up Bell's Creek and saw a Sea Eagle

We could have had a nice home-cooked meal together but Nick didn't want to bring him back.  I even made a carrot cake to follow the schnitzels.  It seems I enjoy being an old-fashioned Mum at times.  Brett lives on frozen chicken rolls because they are cheap from the local IGA.  She eats for nothing at her place of work and often brings Brett a meal.  They don't do much together because of her night shift.  And she works weekends.  The last time Brett was here was when Nick got married Feb 2017 and Brett was best man. But now Nick and the mother of his new children are separated. It's all just drama and I don't have to be a part of it.  Brett doesn't want to be either.

He says there is too much traffic here on the Coast for his liking.  He likes it out there better but he does not like her job.  He doesn't like his much either. It seems to involve macerators and pig shit.  Welding with a putrid smell.

Thursday, September 13, 2018

Just stuff

Computer Corner

A walk from the doggy park

Dangerous under foot

First new shoots and catkins

I planted a Pomegranate yesterday

Sunday, September 02, 2018

Local stuff

Volume problems: talk about the "Infiltration basin" and how rare it is to see a boat that big in our bit of the Pumicestone Passage.

Blast from the Past

Saturday, September 01, 2018

Heart Failure with preserved Ejection Fraction (HFpEF)

xri app opening screen
Having health records online may be a risk to privacy but the X-Ray and Imaging chain of imaging services offer an app when you go there for a procedure.  I took the pamphlet and I signed up for the service so that I could get my results for my recent echocardiogram.

I saw Dr Jo before the results were available online anyway and I came away thinking that nothing much had changed except for the fact that that the pulmonary valve stenosis had reappeared in my life.  The last I knew of it was that they had decided via a past echo that I didn't have one.  It turns out that it has been on record again since 2011 when Dr Fleur must have ordered an echo.  We spent time discussing this at my doctors appointment because Dr Jo was also unaware.  Nevertheless it is only a minor stenosis.  Everything came across as minor the way Dr Jo gave me the results.....  the slight mitral valve weakness, the minor pulmonary valve narrowing and some diastolic abnormality that I barely took notice of because she said that the main thing was that I had a good ejection fraction of 65%.  I did not realise the significance of that.  It sounded all pretty "normal" or rather "benign" like my murmurs have been described in the past. 

I have known for years that my diastolic blood pressure was too low and I have been surprised that no-one bothers to look at it even when I have provided charts of readings.  It is always the top blood pressure reading they care about and it has been getting up rather high for me, over 140, lately but only at the doctors.  At home it has been higher than normal though.  I have also been carrying fluid around my lower legs and feet.  That's why I had the echo, for pedal edema.  I've been getting a lot of imprint marks from even loose socks and my boots on my legs and out-of-shape dispersions of fluid after I take them off.  Dr Jo did see a similar raised area when I was there.  It all got confused with my right foot being larger but later I remembered I had indeed dropped something heavy on my foot.  The more general swelling seemed to come upon me when I went for slightly inclined walk up to the surf-life saving tower at Currimundi Lake.  I could also feel fluid in my fingers that day.  My knees have felt tight on bending and I have wondered if it was fluid in there too.  Anyway I've noticed the puffiness in low places since that day.  I was there with a couple of other ladies who have fibro and/or cfs.

The little conversation group we had formed on Facebook had been trying to get together face-to-face since the May 12 Awareness Day event.  All but Anne (the one on the right) had to miss that due to not being well enough.  It was the first time we had heard of something local to participate in. The May event was in support of #MEAction. 

Two other ladies could not make it to our own little get together in July but they live beyond Caloundra in Buderim.  Small distances matter when you have limited spoons.  We have another lady in Ningi which is too far for us but her hubby gets her around sometimes.  She came to meet me at a birthday gathering I had at the RSL one year.

Anyway getting back to the report, it states quite clearly that I have grade 2 diastolic dysfunction and Wikipedia defines that as:
There are four basic Echocardiographic patterns of diastolic heart failure, which are graded I to IV:
  • The mildest form is called an "abnormal relaxation pattern", or grade I diastolic dysfunction. On the mitral inflow Doppler echocardiogram, there is reversal of the normal E/A ratio. This pattern may develop normally with age in some patients, and many grade I patients will not have any clinical signs or symptoms of heart failure.
  • Grade II diastolic dysfunction is called "pseudonormal filling dynamics". This is considered moderate diastolic dysfunction and is associated with elevated left atrial filling pressures. These patients more commonly have symptoms of heart failure, and many have left atrial enlargement due to the elevated pressures in the left heart.
Grade III and IV diastolic dysfunction are called "restrictive filling dynamics". These are both severe forms of diastolic dysfunction, and patients tend to have advanced heart failure symptoms:
  • Class III diastolic dysfunction patients will demonstrate reversal of their diastolic abnormalities on echocardiogram when they perform the Valsalva maneuver. This is referred to as "reversible restrictive diastolic dysfunction".
  • Class IV diastolic dysfunction patients will not demonstrate reversibility of their echocardiogram abnormalities, and are therefore said to suffer from "fixed restrictive diastolic dysfunction".

I also have the left atrial enlargement.

I also have plenty of  breathlessness.  I was blaming the ME/CFS.  However currently I am experiencing a high number of palpitations and it has been going on for weeks.  Everything could be worse since going on the Olanzapine.  I have had these heart symptoms in the past including pain in a very focussed area under my breast.  I would call them pains, rather than one continuous pain.  I have had it all before and it has all gone away after a season of it.  I usually go on the Deralin but lately I noticed that I have been too dizzy on it and that I just don't feel like it is helping properly.  Surely it slows down the heart palpitations, even can cure them but...lately my bottom blood pressure has been so low on it that all it is doing is widening my pulse pressure (the difference between the top and bottom) and when that happens I do not feel good.  Helping in one way and making things worse in another.  I have not actually told anyone about it.  I have just tended to put up with the heart palpitations instead of taking the Deralin.  I think I need a heart doctor.  Why wouldn't Dr Jo suggest it that day?  All I can think of is that it used to be thought that an ejection fraction above 50 or 60 meant that there was nothing wrong but now days they acknowledge a kind of heart failure that still preserves the ejection fraction, which means its systoles doing their pumping-out are fine.  It is called diastolic dysfunction or diastolic heart failure but it is heart failure with preserved ejection fraction (HFpEF).  Wikipedia goes on to say that there are few treatment plans for this kind of heart failure, except for diuretics to bring down the fluid levels in the legs or other places.  It seems to be emerging as an ever increasing problem but insufficient research has been done.  Where have I heard that before?

But there have been studies on older adults without systolic hypotension and with a wide pulse pressure, showing that isolated diastolic hypotension was associated with a significant increased risk of new-onset heart failure. Reference: Guichard et al available at https://www.ahajournals.org/doi/abs/10.1161/circ.122.suppl_21.A19925
The word "isolated" just means in the absence of.
Heart failure with preserved ejection fraction (HFpEF) is an emerging epidemic and there’s no pharmacotherapies yet proven to be useful for it,....... 
Going back a few years, it was quite well known in the patient population that me/cfs caused diastolic (filling) dysfunction.  Dr Paul Cheney was the main man if I remember correctly.  I may add to this post if I find any of his papers warning of the cardiac problems in ME/CFS.

Please add any relevant papers that you have come across in the comments section below.

Help me, a Rat

Friday, August 24, 2018

"PAIN Making" written by Derek Morrison


Today, here in Australia and around the world patients are being not only harmed but disabled due to the continued use of ‘off-label’ Injectable chemicals into the cerebrospinal fluid of the spine without Regulatory Approval. Epidural steroid injections for instance are a classic example of this today through such being used on ill-informed or non-informed unsuspecting patients and in some case directly ‘ordered by Insurance Companies’ to “hopefully” improve their moveability and able them to return to the workforce. Those that carry out these procedures have ‘also’ been ‘mixing’ two or more of these ‘off label’ toxic chemicals together, and injecting them Intrathecally into the patients without any awareness such was safe or had Regulatory Approval.

The question is ‘why’ have they been allowed to do so for decades without being challenged, “is such safe”??? The answer to this, is when such injections started way back in the early 1920’s in fact 1921 there were NO regulatory requirements Governments placed the trust and expertise in the hands of the Medical Profession without any checks and balances in place. In fact, the first injectable toxic chemical used as a dye in x-rays soon led to Chemically Induced Adhesive Arachnoiditis within the subarachnoid space, [spine] and due to such was stopped not by the Government but by the end-users themselves, the Doctors injecting such into the patients. This was due not so much for the welfare of the patients, but for ‘self protection’ legally.

The American FDA being the World Regulatory of new drugs had in place by the early 1900s a set regulatory requirements known as a New Drug Application [NDA] for Companies wishing to submit a new drug for Marketing. What was NOT in place was a set regulatory requirements for Companies wishing to submit an application for a General Marketing License for diagnostic radiographic x-ray toxic contrast mediums. [Dye] for until then end-users were using ‘Air’ in such procedures. [“Air is cheap”]

A specific regulatory requirement on x-ray contrast mediums [dyes] never arrived until 1969 almost half a century later, due to the thalidomide issue, by this time the medical profession had injected this “dye” injuring close to 60 million patients throughout the world 20 million of these in the US and tens of thousands here in Australia without any knowledge of doing so. Why was this? Well those carrying out these injections were not ‘linked’ to the patent’s GP, Specialists and such like, furthermore, the development of chemically induced adhesive arachnoiditis is insidious. The slow damage to peripheral nerve roots and the related man-made disability for many [but not all] develops over time and a relationship to the cause, a past injection of what was deemed to be safe, was never considered.

Today, here in Australia and around the world the practice of ‘off-label’ use continues without any Governmental oversight or Regulatory approval of such practice in place. I believe not only these end-users need to be held accountable BUT also the Government Regulators, of each of the 107 Counties where it was used, sadly many of those once employed by these Government Regulators throughout the world are NOW working for the the Manufacturer’s or subsidiaries.

My Blog explains how many Australians today have been harmed by this unregulated x-ray dye and ‘other’ such injectable substances into the CSF of the spine [and elsewhere]. 

The first contrast medium causing horrendous pain and disability was lipiodol an x-ray oil based dye (1921-1946) then came Iophendylate Pantopaque or Myodil another oil base x-ray dye [1936 – 1996] causing chemically induced adhesive arachnoiditis.

Also, my research and that of others show that even the newer water base x-ray dyes cause chemically induced adhesive arachnoiditis and the related horrendous pain and disability.
It's clear today, what has happened and its cause, it's now up to you the reader to understand how this was allowed to happen.


Thursday, August 09, 2018

I'm still alive but I had a bad run

I'm still alive but I had a bad run haven't I?  Ever since missing my birthday outing back in April.  I would add relapse upon relapse whenever I went out starting with masked people in doctors' waiting rooms.  I cancelled so many important appointments even after re-scheduling twice so I still don't have any advice about zinc, copper and pyrrole disorder or if I have the HLA gene because Bli Bli clinic will not allow results over the phone, not even an "action" clause.  He does not even work there but seems to use their reception people this Dr Osbourne does.  I had better make an appointment now that I am well enough to go.  I had to cancel dental appointments even though I lost another tooth during this time and my denture needs to be replaced or fixed so I cannot have a nice smile yet.  I will have to go on a denture waiting list after tomorrow's socket check (and fillings) because I had a major dry socket and lots of tooth shards painfully emerged from there over these months.  I think it has all stopped now so I am ready for my smile.

I have so many photos to post anyway because there have been changes to the yard around here and it all looks different and since my energy levels have picked up, I've been getting out of the house if only to go to doctors appointments and taking photos on the way home.  I have to catch up on so much housework and yard work.

The strangest thing that happened was the switch that flipped a couple of weeks ago inside of me that made an instant change from constant faecal loading and gastroparesis and associated bowel obstruction attacks and fluid diets; to sudden onset anxiety and its associated intestinal hurry.  So I went from fighting constipation to being a mental basket case.  I always used to say when I was young that worry kept me thin because it kept me moving in more ways than one.  Well I'm moving again, that was until I was put on Olanzapine for the agitated depression symptoms.  Dopey and well now but with more pain because I am moving my body so much more relatively speaking.  I will add some photos later.

From Jungle to Desert in One Day thanks to Housing Department's way

It will now lose all its leaves without shade

The bare ground is where the pepper tree canopy blocked out light

Friday, May 04, 2018

Lung scan results for March 2018 received in April - Lung Nodules Vanished

I was given a dye contrast for the last scan which I was not happy about.  I did not react to it in any obviously adverse way.  I was so eager to get my results because I had been feeling so well since taking the prednisolone (in the fluey, fever department) it was really hard to believe I may have been on the road to Adenocarcinoma (lung cancer).  I had other "body" problems but I was not feeling ill and I had energy even if I could not make the most of it due to migraine and heat intolerance and gut problems. 

I had an appointment with Dr Craig Wright on April 6th and it was there that I was pronounced cancer-free.  He said it could not have been cancer or pre-cancer in the first place because their "nodules" don't disappear and all mine had "resolved".  Yes, I celebrated with gratitude and relief and passed on the news to family so that we were all free of worry now.  I told you I did not feel like I had cancer.  The doctor was wrong and I am glad.  Thinking back I should have said something about the worry he caused us all but all I wanted to do was kiss the man who was delivering the news that cost $175.  I will never know what the cause of the lung nodules was.  He did not need to schedule another appointment so I left never to return.

Sunday, February 04, 2018

Christmas - Boxing Day Stories 2017

Overnight visitors

Those lights broke down 2 days before Christmas.  I had them 2 weeks all up.

The first time ever Milo has ruined food she was not supposed to get at, at the table.  Butter Icing, yum!


If you read this paper, you will find out Borrelia Infection has stages like cancer if left unchecked

Helen, Marlene, Beau, Brett, Bev and Kerry visiting the man in a coma.  I sent a card with Scott after he came back.
Roger was brought out of the coma on Boxing Day in Toowoomba. Roger was discharged from Jandowae Hospital where he was born, two days ago.  He's taken a journey West via ambulance via Dalby Hospital as he has improved but I knew none of that while it was happening.  They are calling it a miracle and back from the dead but I think he hopes that death wasn't the case because there was too much of nothing there.

Post-sepsis syndrome? Too early to tell but the only main problem he has is not being able to walk properly.  Now we both own wheelie walkers.  Actually Sharon has mine at the moment because she is dying at Jan's place with lung cancer.  I haven't needed the walker since I started taking steroids full-time.  Sharon has not been given long to live and I will miss her.  The diagnosis was only 2 weeks ago but it was obvious something terrible was wrong with her.  She had already stopped eating.  She was measured at 35kg.

The circle of life has brought Roger back full circle to where he knows so many people from the past.  It seems he will have a trial living in the 3rd house on Ben's farm to see if he can manage. Zach and Red (?) have the second house because they run the property these days with Ben retired. The mind boggles at how a step-son of Roger's could end up managing a million dollar property, not that I know how much a huge farm is worth.  It was my kids who spent time with the Tanners but I guess it solved a problem for two people.   Zach isn't exactly a city person having lived in Clifton-Nobby.  The house where Roger will be is Ben's Mum's old house, perhaps the original farm house and he stays there whenever he goes out there.  Back to Jandowae - Burra Burri, with Bev for the first two weeks.  Without Bev when she goes back to work.

Wednesday, January 31, 2018

That cough and fever went away but still diagnosed with lung cancer

In December 2017 I tried  out a vaporizer.  As a tobacco smoking substitute, it tastes horrible.  Not doing it.  However also in December I felt like my cough went away, that extra cough I had and most of the lung noises with it went away.  I was still smoking roll-your-own tobacco.  Also sometime in December I stopped having fever-like sensations and the associated rise in temperature. That had been going on all year.   I had had a repeat lot of Clarithromycin by then but only for another week and this phenomenon of vanishing cough, I only noticed weeks after that.  I'd like to think they helped me kill off something that had been an added chronic burden but you couldn't say, after that delay.  I also had been taking 5mg Prednisone for quite a few months by then and was feeling much better for it and now quite mobile without any thought to an aid.  Anyway, the cough is gone for the most part and what is left is probably mild emphysema.  Although Dr Craig referred to it as is moderate emphysema.  I would love to say that all the lung nodules have gone away too but I had gotten really bad news about them from Dr Craig Wright {respiratory physician} and I haven't been game to write it, because either I have been in denial or it is just another misdiagnosis.  It is hard to believe especially now that the cough thing and fever have gone.  I will find out more when my next scan is done in March.  Here's the "cancer" story.

It is Dr Craig Wright's favoured opinion after looking at my most recent lung CT that I am "dying slowly" [his words, farking hell] of what will end up being adenocarcinoma.  At this stage he says if I had a biopsy it would show "atypical adenomatous hyperplasia" (premalignant) and he said it is always progressive which is hard for me to believe.  Always?  Anyway they can't do a biopsy while they are less than 9mm and mine are less than 2mm so he can't know for sure.  The only reason for rejecting a vasculitis diagnosis is the fact that my ANCA was equivocal (neither one way or the other) however two of those ANCA's have shown up over the past few years and I think it was the MPO one that has been positive aka "reactive" at least once.  I am not sure how having neutrophilia during a lot of 2017 if not still (I cannot get detailed blood test results from Dr Jo) has affected those readings since they are antibodies against your own neutrophils. (yes, autoimmune). He said I would die and I felt like this man was "pointing the bone" at me and I did not really believe in that power.  Ofcourse, when the cough and fever went away I was even more sure that this doctor has made a "wrong" diagnosis.  But I had to live with it until I could prove otherwise at the next CT scan.

Lung cancer has been in the foreground particularly in Jan's life but I socialised with the whole family too that seems to have had lung cancer go through the family like it was a virus.  First it was Sharon's Mum, then her Dad and now she has been given a few weeks to live, told just over a week ago and finally sent home from hospital to die at Jan's place.  Jan is taking on a real burden isn't she.  She said she would do the same for me but she has not been confronted with a dead body yet (aside from her Mum once).  Sharon's sister and good friend are also taking it in turns to be there but it is Jan's home.  Sharon's home has to be cleaned out and with her clothes stalls market produce, it has always been a mess but everyone else is taking care of that upstairs.  The Department of Housing said all her gear had to be gone within 2 weeks of her death.  Her son B has to move out because he was never on the lease.  Sharon has the money to pay for what she needs but she is not allowed to be given oxygen for free because she is a smoker.  I know they like to threaten smokers these days but being denied oxygen so you can stay in your own home for the dying process is wrong.  There is hardly any point her giving up smoking now because it won't make any difference to her death sentence. 

Sharon was only 35kg when she first went to hospital because she had not eaten properly for years.  It felt like hair in her throat and chest she was swallowing and getting stuck she said but she has also talked about glue on her skin and scalp so she got her head shaved to get rid of it last year.  Jan has always thought she had lost the plot when all that started up but the actual main cancer mass is in the throat and top of chest area making it hard to breathe.  Her breathlessness has escalated more quickly recently and the strain on her heart is likely to cause it to stop because of another condition they have reported that she did not know she had.  Of course she cried when she found out how short her life would be but she is not in any hurry to die.  She has no pain so why would she be?  It was the lack of pain that kept her in denial because her parents had plenty in the end and the morphine was turned up on both of them.  They even gave Sharon all her morphine for the "future" all in one go.  She is on a small dose now.  Jan says it keeps her calm they said.  She said it helps suppress the cough but they also put her on steroids which has made her hyper and unable to sleep so that is a weird treatment.  Sharon could have gone to Nambour Hospital or Caloundra Hospice but she did not want to go.  Her mother died in Nambour and her Father died in Dove House Hospice so you can't blame her.  I loaned her my walker and someone else has just offered a wheelchair and in comparison to her housebound life before, she is just getting more and more tired.  Visitors all the time and someone to sit up with and talk to during the night.  She would not be getting anywhere near the rest that she was getting at home before she went into hospital.  Her life was just as tiny as mine.  Not that I'm bored.  Everyone makes that decision for you, that your life is somehow not good enough but recently an ME lady died that I heard about.  Anne.

At the end of her life, Anne wrote: “If, hypothetically, the physical suffering could be taken out of the equation, I would have been able to live contentedly even though my life continued to be restricted to my small apartment and include very little activity. Unlike most people I could find such a tiny life bearable and even happy.” But Anne’s life was not tiny. She achieved more within her restricted circumstances than most people could. I am so sad that she is gone. Everyone who loved Anne is in my thoughts, and I hope that people with ME will remember her. She shared so much of her “tiny” life with us, and tried to make our lives better. Read More about Anne.

Anyway, I have been given strict instructions not to die within the next 5 years by Jan being the one that seems to bare a lot of the burden and worry from lung cancer in the life of her friends but not in her.  And I will let you know the results of my next scan in March 2018.