It has been just over a week since we went to see the Gastroenterologist Specialist, Professor Dr Martin Weltman, down at The Prince of Wales Hospital Medical Centre and he took less than a minute to tell me it is not Cirrhosis of the Liver, YET..
but no thanks at all to the local so called specialist Dr David Parkin 🦆 !!!!!
What a quack!!!! HE sent me home only on steroids to reduce the inflammation!!!!
Steroids are NOT a full treatment, more like a bandaid, so as soon as I would have finished the current course of steroids the liver disease would flare up all over again, becoming more damaged with every attack and eventually it would become full on Cirrhosis of the Live!!!!.
Professor Weltman said I have Auto Immune Hepatitis, (not the contagious kind), but even more dangerous.
Auto Immune diseases are caused by a person's body, wrongfully turning on a switch that sees a particular bodily organ as being an alien threat, so it starts attacking it.
Anything can trigger it, including but not limited to: viruses, infections, pain medications, antibiotics, blood transfusions, chemo treatments, etc.
He said I have probably had it for a very long time, and it will be a challenge for his team to try and pinpoint the original cause, which they might never be able to identify.
He and his team will investigate every aspect of my medical history, speaking to my Oncologist, and my numerous other surgeons who have performed surgeries on me in the past.
He wants his Pathologist to retest the liver biopsy samples taken in Wyong Hospital as he doesn't completely trust the accuracy of the report.
He also started me immediately on the correct treatment of the Immuno Suppressant drug, Azathioprine and explained it is a very slow process, over a very long period of time, possibly years!!!
He did say I am not going to die, which gave me great comfort, but then he said I am still not out of danger as my liver is in total distress and appears to be under attack from different sources, but it is also struggling to fight back
He and his team will decide the best way to move forward after they have accessed the liver biopsy samples to do their own tests.
In the meantime, I sacked the local Quack which added another difficult element (in that) I have a PICC line installed in my last remaining good vein, and the only place I can have bloods drawn is at the local hospital. Our stupid public hospital rules state that only doctors with 'booking rights' can authorise procedures to be carried out at the hospital, (that only the hospital can perform) SAY WHAT??? My GP has no authority, Parkin the quack did, but he wouldn't send the reports to my GP, he wouldn't even add tests requested by my GP. He just doesn't play nicely with others and I am glad I sacked him and sought out a better, more informed Specialist.
It is going to be a long battle but at least now we feel we are getting the help I need to fight this.
Diet plays a huge role in maintaining the strength required to recover from liver damage, as a liver in crisis expels protein instead of distributing it to the body's building blocks, so I need 122 grams of protein every day, spread out over small frequent meals, even during the night, hence my sleep is disturbed even more and I find myself micro-sleeping even while trying to do the simplest little chore.
I am so exhausted and battling a Lactose intolerance from the meds so I have frequent, painful, upper abdominal cramps and a constant headache. My legs are swollen painfully with fluid and if they were green you'd mistake the for the HULK's tree trunks.
My hands and fingers have dried out so badly my cuticles are cracked and bleeding as are my lips and now I have mouth ulcers to contend with...
Sheesh! And I thought fighting cancer was tough !!!
I've added a couple of photos of me with my friends, Debra and Paul, taken by them, in Wyong Hospital the day before everything went really belly up.. They kept singing "They call me Mellow Yellow" :-)
Anyway this fight has just begun and I thank you all most sincerely for being here for me once again
Huge hugs and roses xxxxxxx Meg
As the saying goes, "there is no greater fear, than fear itself". Now there is Hope there is no more fear, just sheer dogged determination to beat this. Huge hugs n Love xxxM
When all we have is our Faith and belief in something greater than we are, a hug from a friend brings it all into perspective. Hugs n roses, M
Thank you so much for your support, It is a road I am all to familiar with but at least I know what to expect and now have something to fight. Huge hugs n roses, M
Jo
I would love a neck massage but Ray only has one hand so it never really works when he tries to give me one. LOL!!! I may try and find someone who does Shiatsu, any relief would be a blessing.
Huge hugs and love, M
huge hugs n roses, M
The professor said he sees three new cases like mine every week, I can't help wondering why.
Over use of Antibiotics???? Pain killers????
Something seems amiss to me.
Huge hugs dear friend xxxx
I'm afraid to say my body doesn't handle drugs, of any kind, very well, and if there are any side effects to be had, I will surely run the whole gamut of them as my GP is now learning about me. LOL!!!
I'll definitely give the Mylanta a try, after we heal the Thrush, it would have to taste better than gargling with Bi-carb soda. Hugs hugs, M
Every day in there was sheer hell as I missed my boys so very much and I was afraid of them fretting and acting out after three weeks apart, which of course they did.
They're back to their normal boisterous selves now, and all is good, they keep me going as I can't bear the thought of leaving them behind. I know you will understand this. Hugs and much love, dear friend.xxxxxx
So happy you have that hospital behind you!
It took nearly a week for him to come around but I was expecting it and they DID come around. :-)
We are onto our 5th GP since moving back here 8 years ago and we are so lucky my Chiropractor told us about our current GP because Ray and I both love him.
We both also felt really comfortable with the Professor, then my sister told me he was my Niece's specialist until she died in December 17.
She couldn't fault his treatment of my niece, he did everything he could for her even though she was terminally ill when he took her on.
I hope you find a doctor you are more comfortable with soon, they are out there. :-) Huge hugs, M
Hugs n love, M
I am so pleased you've finally got some help. So sorry I couldn't come down last Friday but as you know I've been crook with this bad cold. I hope to come down this Friday, but only if you're up to it. I do hope that your mouth ulcers and cracked fingers and lips are healing. You're one strong woman. Praying for you all the time. Love always Chris
It also means I am at greater risk of tumours, skin cancers and many other nasties, I'm also not allowed to go out in the sun. :-(
But I so look forward to your visits my friend, you always bring a breath of Spring with you. xxxxxxxxxx
It isn't over, 'til it's over. :-) hugs n roses, M
It really is a stupid system when a GP can't Authorise a request for pathology from the local public hospital when it is a special case involving PICC line access that only the hospital can do..
We have found a way around the problem by using a local Specialist Haematologist, who does have hospital booking rights, who does know my GP and who will gladly act as a go between to authorise the blood tests and make sure my GP gets a copy.
It will all work out I'm sure, but it sure involved a lot of running around, back and forth to both doctors, and the procedure won't be in place in time for me to have the next blood test, which is due tomorrow. But it will happen now. :-) hugs n love, Meg
I’m sorry to hear your Mum suffered through that, I wouldn’t wish it on my worst enemy.
Cirrhosis of the liver has many causes besides alcohol, so it is sad that alcoholism is the first thing we think of when Cirrhosis is mentioned.
I have learned so much in the last few weeks of researching, it has been a real eye opener.
Huge hugs and love xxxx
When you say it, I BELIEVE God has got this and it will give me strength to fight.
Our medical system has some very funny quirks and home nursing is limited to changing dressings, administering needles and giving comfort. Sadly they are not qualified nor permitted to draw bloods through the PICC line or even a Port Catheter.
I did receive some good news today, the Haematologist I approached to help me has agreed to authorise for my bloods being drawn at the hospital, I'm just waiting for an appointment. At least I know my GP will get all the results sent to him as they have worked together for other patients.
Wouldn't it be fun if we all could get together. :-)
Thank you so much my dear friend, huge hugs and much love always xxxxxxxxx
Hugs n roses, Meg
Having had my own share of medical crisis, I pray you will find some relief from your pain and discomfort and best of all a decent night's sleep - makes all the difference on how one copes with everything else.
Lynne NSW
Still, I believe in silver linings and looking onward and up towards the beautiful blue sky, and hope.
Tomorrow is another new day to be thankful for, despite the pain, life is good and so worth embracing.
Huge hugs and roses, Meg