Like fighting with air.
Doctors are not my favourite people in general...having said that one very good friend of ours is a Doctor, but a doctor who doesn't follow blindly what the AMA push...what they seem to push with thehelp of the Pharmaceutical companies is not health but a state of fear and dependence that is anything but healthy. There is no money in healthy people and no money in dead ones...I am allowing that those doctors who are exceptions to this rule are some of the world's best people.

We've had some dreadful innings with the medical establishment, in the past ...too long and sdisturbing to go into and too boring also...

Last week I wrote to my husband's GP (with Don's okay)

"26/2/07
Attn, Dr. S... (son of a bitch perhaps???)
Since late last year I have noticed Don's increasing tiredness and shortness of breath. Other people have commented on this as it is a visible thing. Considering Don's heart condition and his restricted breathing due to Quadaplegia this has been a real concern.

Don complained about this at his last visit with you (mid Jan.) and you told Don you didn't think it could be connected with his heart condition.

A friend of ours is a physiotherapist and she said that his breathing should have rung alarm bells with his doctor.

After that visit with you Don faxed in all the material you asked him to send to Dr GW (he is a sleep apnoea person), soon after his visit with you. When he rang last week to find out why Dr GW had not contacted him he was told by the receptionist that the doctor had not looked at the faxed material yet.

Don then saw Dr R (Urologist) and was booked in to have a Cystosophy on 28 Feb.

Today while having a pre op ultrasound the Radiographer saw a fair amount of fluid in the right lung.

Since Christmas Don has been unable to breathe properly and unable to see the Heart Specialist till May 5th.

By then...what?

His lungs filling up with fluid would possibly suggest a problem with the heart as there is no chest infection.

We are disappointed he has been left like this for so long.

Fluid has to be drained from Don's lung to enable him to breathe properly.

Not on May 5th please...
(End letter)

I woke up Wednesday 28th morning at 4am unable to sleep wondering how to get to someone who would start Don's treatment and so faxed this letter to the heart specialist Dr K

"Dear Dr. K,
My husband Don is a patient of yours and saw you for the first time mid 2006. You wanted to see him again in January 2007, but unable to get an appointment till May 2007.

He is a Quadriplegic and has been since 1982. You would have his records but this might save time. He has limited breathing and an inability to cough effectively or to vomit due to Quadriplegia. We have managed to avoid any lung congestion in this whole time and Don has only once had flu, which didn’t settle, and it cleared up.

Since about September last year it has become noticeable that Don was having trouble getting his words finished because of constant shortness of breath and was growing increasingly tired. People commented on this because you could see his shoulders having to go up and down…you would know what I mean.

About a month back Don went to his GP but was told it wasn’t to do with the heart (?)

Some days are better, but most days Don has trouble finishing breakfast, and is sleeping longer and longer.


When Don had an Ultra sound (Monday) on his kidneys pre a day surgery to look at the bladder, the radiographer saw the bottom of Don's right hand side lung and said, "there's a lot of fluid there"

I suspected this because Don sounded like my mother when her lungs also had fluid build up from heart disease.

So the day surgery is off thank God. For him to have had any surgery with fluid on his already compromised lungs would have been a dreadful risk.

A chest X Ray which I can drop in to you if you request showed up the fluid on the right lung (Don sleeps on his right side…so he can sleep; he can’t sleep on his back and too painful for too long on his left).

What is worrying us both is that yet another weekend is coming along and the fluid will continue to build up. Last weekend Don felt too tired and weak to do more than wake up and eat between sleeps but got a little better in the evenings. That was the worst… Monday and Tuesday were a little better.
Irealise I am stepping outside the protocol and hope you will understand this.

If I stand back and do nothing, and my husband dies …I can’t contemplate this.

Don would most likely not survive any complications of fluid on the lungs such as Pneumonia – he can’t cough.

Please when you have time get back to us on this and I ask you respect confidentiality of this fax as Don has a good relationship with his GP. but nothing seems to be moving along."

he did at least look at the X Rays...and suggest a CT scan...which no one has bothered to look at...

in between this Don's GP had replied promptly to defend his Honour...but did not address the fluid which can cause major problems... honour is important to defend I suppose.

27/2/07
Dear Don and Therese,
"I am sorry you do not feel Don has been treated appropriately. Certainly shortness of breath is a concern and requires investigation. On reveiwing the notes from our last consultation I not that most of the discussion centered around fatigue and sleepiness for which I gave him a referral to Dr GW.... (not true...shortness of breath was mentioned ..but once the good Doc centered on Sleep apnoea he wouldn't be stopped) We also discussed the bleeding from his bladder and had a long discussion about his dry mouth (duh!!) and medications. Don has complex medical issues (hm we know this!) and our consultations alwayd cover a multitude of issues. I had certainly not realised that difficulties breathing were a concern of this magnitude based on our recent meetings . (It was visible and a quick listen with a stethescope would have found it).

I have looked back through Don's file and Dr K (heart specialist)'s letter from last July suggesting he see Don again in 6 months, about now. I provided Don with a referral regarding this in August last year, plenty of time to make an appropriate appointment. I will fax Dr K's rooms asking if a more urgent one is available but have no final control over their bookings. This is the same with Dr GW.

(get this next bit)
...unfortunately I will be away for approximately 4 weeks at some stage in the near future.... (the very next day as it turned out...)"

Isn't that just wonderful?

As Don is not well a fair amount of time is spent at home so I replied asap so the good Doc S.O.B. would get the letter before his holiday...

28th Feb 2007

"Dear Dr SOB,
We have learned by years of experience that one has to be proactive when it comes to dealing with health problems. We are very sorry if you felt your professionalism as to Don’s treatment was being questioned. This was not the case. It was just the telling of an experience by way of providing information which is a good thing.

Don was less than a day from Theatre and apart from the Radiologist spotting the fluid on his lung he would be in there today which could have had a drastic outcome.

A Chest X Ray was done yesterday on Dr R’s referral. He would have those results.

Don had seen three Doctors, yourself and the two specialists and all had to observe the manner of his breathing but until Don himself asked the anaesthesiatist Dr Mc ( after being alerted to the fluid by the radiologist) no one listened to his chest. The fluid would have been heard by listening or by percussion. Don’s limited breathing at the best of times and his obvious shortness of breath would mean that this is always going to be a problem, without anything else.

Re Don’s appointment with Dr. Kark –

Don was asked by Dr Kark to make an appointment with him for late Jan. 2007 but he was specifically asked not to ring to make it till December… then he was given an appointment of May 5th. This was not Don’s fault, as he did as he was asked.

Don is just trying to get treated and in his case, he cannot afford to have fluid like this on his lungs and that is the most important thing.

Re DR Williams, we understand we have to wait to get in but he would not have known how urgent it was because he had not looked at the referral and medication list etc we had faxed some time back.

Please don’t take offence at this letter, as none is intended. We would like to continue the good relationship we have with you as you have an understanding of what Don needs and this takes time on both sides to build up. As stated this is intended as only to inform you.

P.S The referral for the CT Scan came through as a blank page last night."

I would have liked to gotten really nasty as I just bloody hate these unctuous bastards...they kill people and stay smiling and cool! I don't think most of you would have any idea how much I so totally hate them and the sick system they serve. They generally do not serve us at all and have so much arrogance it is sickening.

We are no closer to getting the fluid drained as its now the weekend we just have to hope we can get things going on Monday...

People say to me sometimes "who is your doctor? " I tell them why do I need a doctor for, I am as healthy as a horse and plan to stay that way if I can. If I need something I pick a name out and go for it. I don't have to like them, too many of us likt to imagine the kindly doc smiling down on our poor suffering heads... crap. Its when they smile at you and get that high priesty look on their faces that you need to be scared.

So thats last week. My poor bloody cat Archimedes is dying in front of me...she is very old and I hope the poor thing goes when I am with her...she's not suffering too much and knows me...she looks comfortable having her long sleeps. Shit.

And yet I am not sad about all of this... there will be time for that. LIfe is good while you have got it, and a lot of funny things happen, like last week when Don said to me,
"Do you want to know what my GP said to me at the last visit?" I said yes of course.
"It might upset you." I said theres not much anyone can do or say that will upset me these days...

He said" Dr S... said 'And Don just how long do you think (emphasis) you're going to live?' "

Bloody little pukey little prick! I roared with laughter and next thing we both were laughing our gizzrds out... Don with not as much blow as me...

I said or maybe he'll get hit by a Mack truck.

Happy holiday Dr Son of a bitch.