DREADFUL INVISIBLE DISEASE / CANADIAN UNIVERSAL SYSTEM COLAPSED
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Sleepless in Canada, I did not realize that your wife is needing a Whipple or I missed it along the posts. My husband had a Whipple and I wanted you to know that yes, it is scary and a big surgery BUT it is not a life threatening surgery like heart surgery. He was 73 at the time and it bought him another 5 years. That was 10 years ago and things have improved. CC patients know that surgery is their best choice no matter what kind. It is also true that a Surgeon does not know what he will find until he gets in and sees it but we even had a man on here who had a Whipple and it bought him 15 years. The morning after surgery they had Teddy sitting up in a chair and the next day walking! Take your break and do what you have to do but when you can please let us know how things are going. Prayers and the best thoughts are flying out to you!
Iowagirl.
less hopelees but sleepless . I simply cant sleep normally for the past 6 months and I am officially the bread winner at home now.
kid just finished university with post grad.
physical problems of my own.
great daughter .
working part time and helping me with her mom.back on an exhaustive 7 day in a row 12 hours shift tomorrow.
nevertheless came across ur post.
sifted briefly through ur 1042 posts and I had no idea as to how sick you are.
I AM profoundly sorry for what is happening to you.
profoundly.
Now this possible nightmare road to leukemia after all that I briefly read u went through and are still going through.
U r a tough and very strong woman and your hubby is a very lucky man to have you as ur wife .
as u know I came here to try to find directions, opinions answers that will be very hard to find.
The only thing I can tell you is that I have no words to express my gratitude to u just by reading my posts while fighting for ur life.
You are right… I have to fight a system together with my wife. side by side till death do us part.
She is everything for me. everything. she always took care of me.
she raised my daughter to be a brave young lady now.
That’s what marriage is IMO… not just the young couples passion that we all have experienced but to live together , go through good times together and in life through bad times also.
I will pray for you too so that may G’D give you the blessing to even see great-grandchildren if you don’t have any yet.
Marion Is the front line warrior of many warriors that see and treat people on a daily basis.
They(nurses) are the ones to care after the patients after brutal and sometimes simple but nevertheless dangerous surgeries.
they see, feel talk motivate, encourage and on top I have seen them treated like trash by “doctors”…… long story…..
Anesthesiologists keeps the patients alive while the surgeon cuts people and do their work .
without the anesthesiologists the surgeons cant do nothing.
Anesthesiologists are crucial in this whole ordeal.
one wrong amount of meds or wrong procedure from their end we die on the table.
I have this issue with surgeons believing that they are the saviors of the patients. absolutely not.
Of course they are key to perform it right. But they are nothing without the other key members of this chess game of medicine.
This is the main issue that my wife and I are fighting for.
the surgeon atm believes that a surgery of this caliber has to be thought thoroughly. More thoroughly then 6 months of several exams in the arsenal and no diagnostic?
the only one not performed was a PET scan.
every other exam was done.
That’s why specially her and I today draw the line and said … I can live with a negative diagnostic… I cannot live without one and she rather take it all out and live with the consequences.
I am praying to the almighty that she does the whipple and it all comes negative… that’s a start.
Maybe for people that will lurk here in the future don’t take a doctors word only.
read .. research… understand what you will face and put the risk reward in balance.May G’D bless you ….. a lot
I am a man of faith and I abbreviate the lords name because I do not say his name in vain just so u understand why I abbreviate his name.My warm and strong from my heart best wishes to u and all your family.
you take care of urself.
I will not be posting for awhile due to time limitations.“sleepless in Ontario”
“a lil less hopeless”,
I’ve been embroiled in my own issues here…..new problems with a possible /probable bone marrow disease to add to the CC problems.
However, I have been following the comments in your strand of posts. Yes, Marion, did say it perfectly IMO.
I am so pleased to hear that you are pressing for better treatment for your wife. She deserves that…and you deserve to be heard. I know that you are so beyond frustrated…and down right mad at the system……but you are doing what you need to be doing to get your wife help. It’s just that it should be a lot easier than this. I always say, “I should not have to be fighting the doctors, as well as the cancer.” It isn’t right…it isn’t fair….but unfortunately, sometimes it is the case. That’s when you dig down and get tough as you are doing.
Please know that I am praying for you (it never hurts) and hope to hear some positive news on getting your wife the treatment she deserves. You’re a loving husband…and she is very lucky to have you on her side.
Julie
Marion.
I read in the corners nurse that you are a nurse.
You could not have said better in the statement above.Met with doctor and hospital staff manager for decision on this conundrum.
second opinion is getting arranged via hospital with PM Oncologist/surgeon.if that does not work two other doctors (secretaries) at PM replied in 5 minutes time after my 10 phone calls to different doctors and administrative staff.
they can try and expedite my wife’s transfer based on documentation that is already on their way to see if they accept the case.I am fighting for her…. day and night … 24/7.
hugs back at ya
a lil less hopeless
hopeless….your points are well taken.
Ultimately, wherever one resides, the key to diagnosis and subsequent treatment lays in the opinion of experts. The reality is that too many physicians are not qualified to handle suspected cholangiocarcinoma patients and ultimately treat them. And it causes financial toxicity to the patient and his/her family as well as unneeded suffering.
I wish for a speedy road ahead.
Hugs,
MarionHi Iowa girl.
Thank you for the reply.
Believe me that you are not country bashing.
To add to my story, I have 2 brothers . Both are doctors.
one practiced in Pittsburgh .
He passed away from Thyroid cancer.
He was trained here in Canada after finishing medical school back home and during his training as an Anesthesiologist back in the 80’s at Mount Sinai hospital in Toronto he left to the USA.
You may ask why right? they could not hire him here because he needed to return back home and then , maybe they would hire him.
My oldest brother which already resided in Georgia told him to simply cross the street, go the US embassy and apply for a resident visa since he had finished his residency as an anesthesiologist in Canada.
one week later his visa was issued and he then went to work in a small community in your Country called Johnstown Ohio.
So you would think. wait a minute. the Canadian Government spent thousands of dollars during 4 years of residency for him and he couldn’t practice in Canada due to a technicality.
to add insult to the injury the American government says … well … thank you very much Canada … we will brain drain your country… welcome to the USA and please start practicing and take care of our citizens.
My oldest brother still practices anesthesiology in the USA in Georgia .
He sleeps in the hospital and he is an impressive example of dedication in regards to medicine. he just turned 74. still rolling.
He would gladly obtain all the doctors that he knows to take care of my wife for free.
the problem is for myself even with him to pay for the hospital bills and surgery which I simply cannot afford.
otherwise I would have flown there and taken care of my wife.
I personally do not think that there is nothing wrong with the American system.
when I was very young I was insured under the American system but I insured myself when I had absolutely NO pre existing conditions.
for several reasons along my life I cancelled my insurance.
Going back to my deceased brother, he was here about 15 years ago when my wife needed a different surgery at mount Sinai.
He went to the hospital to meet his old chief while he was a resident and his comment was as follows: ” I am shocked as to how much and how fast the Canadian medical system deteriorated”
Yes.. during his residency the system was still working but we are talking 30 years ago.
Nowadays you would be appalled how the triage is done at ER rooms in any hospital you go to.
It is sad and shameful IMO.
But that is me and my life and my wife suffering through this system.one would ask, why does the system work in France or in Germany/ forget about England and Australia… things are way worse there.
I could enter into details as to why it works in France and Germany(socialized and tiered) but I don’t live there.
My reality is here.
tomorrow I am going to try and contact TGH and PM to see how can I help my wife.Thanks for replying.
sorry for misspellings or confusing statements but I am trying to stay sane through this nightmare.
all the bestHopeless……I don’t know what to reply right now to your post…..I’m still absorbing it all. I had felt for a long time that the “sound” of the Canadian health care system wasn’t as great as it was set up to be. Our system has it’s own problems….so I am not “country bashing.” But, basically, socialized medicine does not have the welfare of the patient at heart. The waits you have gone through are ridiculous with a critically ill person. I don’t get it.
I hope that someone else will be along soon to reply with some suggestions for you there in Canada.
Julie….fellow patient.
Hi everyone.
sorry for the double post.
good luck to all and I am also praying to all that are suffering from this dreadfully disease.
Hello everyone.
As you can see by my nickname I am hopeless.
hopeless with the Canadian health care system and hopeless with all the doctors that since May have misdiagnosed and mistreated my loved wife.
Not to mention how the majority of nurses and triage personnel treated her .
The so called “Universal and socialized medical system in Canada WHICH IS NOT FREE (we pay on average CAD 12500 dollars per 2 adults in a study through our overall taxation.
I am going further to say because of the CAP (doctors malpractice insurance )which ironically is little known by the Canadian population as a not for profit organization protects them from malpractice with OUR tax dollars and some payment from their own pocket.
The Nurses association is just as powerful to do and undo whatever the heck they want and keep their wallets fat with taxpayers money and also stay untouchable.
Yes ladies and gentleman CAD 12500 dollars in taxes for a collapsing system.
I am sure my fellow Canadians will bash me for the above statements. nonetheless it is the reality, not a fantasy and neither a fiction.Her story is ongoing and it all started with an acute abdominal pain and severe pruritis for which her and I thought was an allergic reaction.
After an injection of epipen and a trip to our small town hospital inside an ambullance , her never ending nightmare and horror story starts.
in a nutshell on day 2 after a battery of blood work was performed and ALL her liver panel functions showed numbers that were through the roof she was transferred to a larger hospital in Hamilton l. At that hospital the initial resident had an excellent plan that never took place, (that man one day will be an excellent doctor but he was shut out of the treatment)
They would do an MRCP on the following morning and further blood-work would be performed along the way.
Then I ask all the members here. did that MRCP ever happened until she was discharged?
NOPE.
After 13 days in the hospital vomiting pure bile and not eating with 3 antibiotics being administered to her and just an ultrasound that could see absolutely nothing they finally decided to perform an ERCP.
ERCP done. sphyncterectomy done. result. bile duct dilation.
Did the doctor request to do a follow up? NOPE.
They went on to discharge her with elevated liver enzymes, pain, jaundice but offered her an Xray. How kind of them.
we immediately called her previous surgeon that performed her cholecystectomy and on we went to see him in less then 5 days.
first exam : blood work and an MRCP with Gadolinium.
Since the exam was performed at night and my wife has severe allergy to IV iodine the Gadolinium was not administered because at this particular hospital they did not want to take the chance of an allergic reaction.result. a pancreas cyst on the head area.
back to the surgeon and he asks to repeat it with gadolinium this time no matter what. Its a hospital she has an allergic reaction then have to take care of her he said.
Its a hospital he said. we are here to treat people he said.
in the meantime we requested the ERCP specialist to see her.
how long would you people think it took for an appointment with this doctor after basically begging to see her? 30 days.
In 3 days her previous gallbladder surgeon obtained another repeat of the MRCP.
how is that possible if the system is the SAME FOR ALL?
either way. the MRCP as we would know lit like a Christmas tree showing an anomaly in the distal area of the bile duct plus a better view of the pancreatic cyst.
now going back to the ERCP doctor consultation. Actually it felt more like an INSULTATION , untill we showed her the MRCP result which WAS DENIED AT THE HAMILTON HOSPITAL SINCE IT WAS CONSIDERED A WASTE OF RESOURCES. Yes. welcome to the socialized and well managed Canadian health care system .
THEN this doctor face jaw fell and SHE actually turned yellow. from treating my wife like trash at the appointment she goes and says. “Oh . i am so sorry” furthermore … she arranged in less then 24 hours a stent placement by another doctor” if I can call him that” and a series of blood exams plus an FNA for the cyst and a brushing pathological study.
WOW one would say. that’s fast. not really.
all this was done under intense stress and lack of care for a human being.
It took another surgeon (not oncologist) to point to her that HEY are you really looking at what you need to look for? NO.
over 3 months went by for ALL the above to happen through basically a battle with the system and abusive doctors nurses and the list goes on.at the end of the whole ordeal…. FNA NEGATIVE .
Brushing : Atypical ductal cells with mitotic figures. suggesting follow up with clinical findings.after that has any of the doctors did anything else?
no.symptoms remained. RUQ pain persists , elevated ALP, pruritis and more loss of weight.
On we go to a larger center in Mississauga where she was submitted to a spyglass exam: inconclusive
MRCP : the doctor is not worried about the cyst… yes that is what he keeps saying
Distal area of bile duct: remains dilated.In his initial consultation and just based on the initial exams presented to him he wanted to perform a whipple procedure RIGHT AWAY, meaning on the following week….. well…. he changed his mind.
Now he doesn’t want to do it at all.
and bedridden she remains and now i am trying to transfer her to Toronto .
ITS been 6 months since the horror story started and thousands of dollars spent in repetitive exams at no avail.
there are more details but since I have been lurking and reading very interesting posts from people that are going through this EVASIVE AND CHALLENGING carcinoma to be detected, here is my wife that MAYBE is in the early stages of the disease and no surgery on the way to PREVENT this DREADFULL AND LETHAL disease for which ONLY 3 to 4 thousand cases are diagnosed in the USA which has a population of 300 million people?
imagine us Canadians with 30 million people only.sorry for the ranting , misspelling etc.. but I needed to let this off my chest.
I read a lot about bile duct and pancreatic cancer that I almost look like ELI which carried his suitcase with information. I think that Eli’s wife was properly taken care in Ottawa slow move but taken care off although she was diagnosed.my wife remains undiagnosed and that is why I believe that the doctors are being negligent.
we know the severe risks of this surgical intervention but the rewards are higher if the pathology shows CC or shows nothing. She can live with that.thank you for listening.
any, but any ideas or help are more then welcome.
sincerelyfrom a hopeless husband
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