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
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Megmy heart goes out to you but know that I will add you to my prayer list and the Lord has this all under control if only we ask for his help.
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
1 comment
by meganne
05 Sep 2018
Thanks Lynne, we humans sure do go through the grinding mill here on earth and it saddens me that so many people suffer so terribly.
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
2023Goodness! You have been thru it!!! Praying that this new dr. will help you get on the road to recovery very quickly!
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35675God's got this Meg I have seen to that everyday. You need your own Pvt. duty RN. Do they not have Home Health Care, where a nurse can come in look after you, draw blood, take care or your picct line etc. Wish I was able, would come over and do all that for you if I could. Not licensed for that area though. If only I were 20 yrs younger, be 80 in Dec.,. I would come in a heart beat. You will get over this! My GP recently told me (in July) I was a tough old buzzard, He's a darling and I dearly love him, but he says I've put all those grey hairs he has in his head. Here's a good one, I was asked last week was I 65 when I asked for Sr's discount. Mind you to myself I look 90 every time I look in the mirror. . Meg PM me please your address. Cannot find the one I had but don't think it would be the right one now. Love you bunches,
1 comment
by meganne
05 Sep 2018
You are ever and always such a beautiful person and wonderful friend and your words always inspire me to be better than I am. For this I give you my humble thanks Miss Lillian 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
145791As always, Megann, you are in my prayers. Something similar happened in the early 70's to my mom. They said she had cirrossis of the liver, but she never drank. Years of poking and prodding, they found it was genetic fatty liver syndrome......
1 comment
by meganne
03 Sep 2018
Thank you Maleah xxxx.
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
35167Keeping you in my prayers. Glad to hear you have a diagnosis and are moving forward with a proper treatment. Can't your insurance carrier get the test results and reports? You paid for them and so you should be able to get a copy for not only your new Dr but your self as well. Hugs. Nan W
1 comment
by meganne
03 Sep 2018
Thanks for your thoughts Nan. Public hospital outpatient services (here) are covered under Medicare and all reports go directly to the Doctor on the Authority Request, so I have no rights to the reports other than if I was still in hospital, then they would give me a copy of everything on being discharged.
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
11927good to see your laughing face. You are a special and strong woman, an example for many. Great a special team will treat you now. Prayers will continue and hugs with love are coming your way.
1 comment
by meganne
03 Sep 2018
Thanks so much Gerri, it's been a tough 6 weeks so far but I am in a better head space now, just knowing what I am fighting and knowing there actually has been something wrong this last three and a half years. It just goes to show, unidentified pain is not normal and we have to push until we get a real answer. Hugs n love, M
743281Hello Meg, Your positive attitude inspires me ALL the way. Janette
1 comment
by meganne
03 Sep 2018
Thanks Janette. That and our Faith is all we really have to fight the unknown.
It isn't over, 'til it's over. :-) hugs n roses, M
1290Well here it is the Rose Dear Margaret (Meg is of course short for Margaret)
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
2 comments
by meganne
03 Sep 2018
Thank you so much my very dear friend. As I mentioned to you on the phone, I have to be extra careful now I'm on Immuno Suppressant treatment as it is designed to lower your body's immune system to stop it killing off your good organs. But that in itself makes one more susceptible to infections, where contact with Chicken Pox or Shingles in particular could actually kill the patient. :-0
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
234496It's good that you are so proactive in your healthcare. We must these days, and that is unfortunate. You ARE a lovely yellow. Is there a yellow rose named Meganne?
1 comment
by meganne
edited 03 Sep 2018
Thanks Jerrilyn, yes it is sad when we practically have to take over our treatment and force doctors to listen, if we want to get help to survive. Just tonight, on the local news, a 19 year old girl died from Meningitis after the hospital said they found nothing wrong, suggested she take Nurofen and sent her home. She's the second one in 3 months. So very sad!
Hugs n love, M
158715You have been through so much since I have met you. I totally admire your innate spirit! Best wishes on your slow recovery.
1 comment
by meganne
03 Sep 2018
Thanks Christine, I do seem to have had a bit more than my share of illness since I survived breast cancer. I guess that's the pay off. :-) LOL!!! Hugs n love, M
173692Nice to hear from you. Have been wondering how you were. Pleased to hear you have found a good specialist doctor who has given you hope to a full recovery. A good doctor that you can put your trust in is not easy to find. My GP left here last year and I don't get the right vibes with the one that has taken his place. I am trying another Dr at the same practice but am afraid he is on borrowed time. So pleased you are getting the care you need. Keep looking after yourself and sleep when you need it. Other things can wait. You are most important. Hugs
2 comments
by meganne
03 Sep 2018
Thanks so much Shirley. It is so annoying when our first line of defence, doctors move on.
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
by shirley124
03 Sep 2018
Thanks Meg. I will keep looking for a good GP. I am sure there is one out there somewhere. Please take care and look after yourself. My prayers are with you. Hugs
52686And such a pretty shade you are! You look beautiful, Meg...loving your hair color, too....what a lovely smile as well, even with all you have endured, you can still muster a smile...you are one strong lady!
3 comments
by meganne
03 Sep 2018
Thanks Vicki, I actually matched the hospital wall colour. LOL!!!
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
by basketkase
03 Sep 2018
Yes, I know exactly what you mean....did the boys punish you at all....ours will run from us and not want to be snuggled by us for a couple of hours....don't know if that is a feral thing...
So happy you have that hospital behind you!
by meganne
05 Sep 2018
Yes, they both ignored me and Tiddles ran away from me, near broke my heart. Then he started doing his business in the stairwell and the bath instead of the litter tray. :-(
It took nearly a week for him to come around but I was expecting it and they DID come around. :-)
261163oh, wow!!! So sorry that you are going thru all of this but thankful for some answers. My son would get the mouth ulcers and was told to swish with mylanta. It seems to work - I have had to use it also. God Bless you with your continued recovery and we will continue prayers
1 comment
by meganne
03 Sep 2018
Thanks so much Tonya. My gums are actually bleeding too, as well as the ulcers so when I went to the Doctor's today he discovered I have mouth Thrush and he has prescribed drops to heal it all up.
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
20088keep up the good fight. will keep you in our prayers.
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4443One battle at a time, seems you do have a big battle. I am so glad you post to us, it's the only way I knew to pray for you. Bless you for being so strong and feisty. I will be expecting a word or two of progress from you, from time to time. Be well.
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40397Thank you, Meg for the update - I am certain you probably don't feel like signing in and posting - but we all want to know how you are - so again, thank you! Bless you, Meg - I am happy you are receiving help. Liver complications are awful! Hope your recovery will be easy and you receive relief soon!! Take good care - you continue to be in my prayers - loads of hugs and love, Laura
1 comment
by meganne
03 Sep 2018
Thank you so much Laura, I WILL beat this, I've grabbed it by the horns and I'm fighting back, when I can stay awake long enough, that is. LOL!!!
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
96265Dear Meg, you will get through this. Sending you much cyber love.
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255050Meganne, I will continue to pray for your pain, care, and recovery. When I had medication-induced headaches there was nothing they could add to the IV that helped. A friend came to visit who knew Shiatsu and she asked my permission to try to help. In fewer than 10 minutes she had massaged my leg and made my headache go away. I hope you can find someone!
1 comment
by meganne
03 Sep 2018
Thanks Betsy, I've lived with migraines all my life and when I have no migraine I just have bad headaches, mostly contributed to sugar and all sugar derivatives, it really sucks! But they are just my normal.
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
66907I'm glad you have found the right help and support . And good friends right there are a godsend. You are always in my prayers.
Jo
1 comment
by meganne
03 Sep 2018
Thanks so much Jo. We are as nothing without our friends and each one is loved beyond measure. Hugs hugs n love, M
32948Well I am so happy you finally got properly diagnosed! It will be a long road to recovery, but at least you are finally on the right road! Hugs to you, Meg.
1 comment
by meganne
05 Sep 2018
Sorry Kim, I know I replied to you, I must have forgotten to hit the submit button. :-0
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
318427Megann, if I could be there I would just like to give you one great big (gentle) bear hug, praying for you, girl....He (God) IS in control
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by meganne
03 Sep 2018
Thanks Shirl, that would be most welcome any time.
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
19823Now there is this glimmer of hope. Prayers are continuing to be with you on this path. Hugs
1 comment
by meganne
03 Sep 2018
Thanks so much Angie.
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
109774So very happy for you God answered prayer one more time hugs and roses Carolyn xxoo
1 comment
by meganne
03 Sep 2018
Thanks so much dear friend, he sure has and through all my beautiful Angel sisters at Cute I shall garner their strength to help me fight this. Huge hugs n love xxxx M
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