"Sarcoma operation and hospital stay"

I had back surgery late last year at a private hospital which went really well, but the MRI done for that showed a lump on the IVC. Around 2 months later, I started the process of sorting it out. Three different drs, a CT scan, blood tests, MRI, Petscan, and two endoscopies (to get a sample) they decided it was a sarcoma but couldn’t tell if it was malignant or not.

So then I had to go to Sir Charles Gairdner hospital because that was the only place that did that type of operation (even though I tried to get it done privately). The hospital was supposed to get in touch with appointment times, after two weeks I started ringing up getting no response, passed from phone to phone, the call centre that supposedly deals with appointments was worse than useless in my opinion, and hung up on me. Then I got through to someone who said I had an appointment the next day which I had not been informed of. The letter (even though the hospital had my email and phone number) telling me of the appointment came a week after the appointment. The surgeons there decided they wanted to redo all the tests again plus X-rays which didn’t show anything more conclusive than before but the lump had doubled in size in the five months since it was first noted.

Finally they do the operation at SCGH, after three days in ICU when they told me they had done an artificial vein graft and removed the right kidney and ovary they dumped me in a four bed ward with three patients of the other gender. You have no idea how humiliating and degrading and stressful this was. I asked repeatedly to speak to the Private patient liaison officer or get shifted to anywhere, no response. It took four days of constantly asking before someone bought my bag to me so I could use my phone and get some underwear. I had to constantly tell people to draw the curtains properly when they weren’t, I recall the patient opposite was always staring and spent most of their time supposedly peeing into a bottle.

I was sent home after ten days (I believe it was meant to be two/ three weeks) on a weekend, the nurse and porter said the discharge lounge wasn’t open so it seemed they dumped me on a seat out the front and left. I was sent home with one change of Band-Aid for the bottom of the surgical cut which was still oozing copiously, a pamphlet about washing and exercising and some blood thinner tablets . When I got home and had a look in the mirror I was horrified to see large areas around my thighs, groin and crotch area red raw and oozing (there were no mirrors in hospital), these had not been treated at all in hospital and they had left some stitches in that were in the middle of an oozing area. I treated these myself.

After the effects of the hospital drugs wore off a bit I noticed that I was having severe pains in my stomach area and back as well as nausea, copious blood in my urine, bleeding for ages from tiny scratches and continued oozing from the wounds. I did my own research and discovered as I understand it, the blood thinner they put me on has class actions against it in the USA because it can cause permanent kidney damage (and I only had one kidney) as well as causing all the symptoms I was suffering. I stopped taking the xarelto and the symptoms went away.

So I rang the hospital spoke to the nurse who is attached to the surgeons and I recall they said that’s ok come to emergency and we can give you some painkillers, keep taking the xarelto! Not only is it a two hour drive to SCGH then hours waiting in a germ infested room to be given Panadol, so I said that would be a waste of time. I wanted to speak to the surgeons but couldn’t, so I tried the private vascular surgeon, got hold of them after a couple of days trying and told them the story and that I had stopped taking because of the side effects and they sent a script for a different one to my GP who also gave me some proper painkillers because you can’t take nurofen, naprogesic, voltaren rapid etc with the blood thinners and Panadol is useless.

The new drug eliquis was better but the oozing from the bottom of the surgery cut kept on going (this is two months after surgery). So back to GP who took a sample for testing and it came back as a heavy puesdomonas infection, I believe notoriously hard to shift, the GP tried without success to get hold of anybody at SCGH and my private doctor was on holiday so we decided to treat it with ciprofloxacin (after I did my own research again). The infection cleared up along with the oozing.

So it has taken 3 months to clear up the wounds and oozing and I am slowly getter but I am disgusted by the treatment I got in hospital where I went in as a private patient and it seemed to me the the lack of thought put into what drugs they wanted me to take. Based on my experience, I no longer have any faith in the ability of the hospital system to treat me properly or even keep me alive.