raye

Forum Replies Created

Viewing 15 posts - 1 through 15 (of 74 total)
  • Author
    Posts
  • in reply to: Guidelines Urge Exercise for Cancer Patients, Survivors #46417
    raye
    Member

    Marion,

    Helen and I were down to London to see my GI surgeon and it was decided to immediately have surgery for my stomach problems. I’ll be admitted tomorrow afternoon and have the surgery Sunday. Hopefully this should fix my problems. My digestive system has completely shut down finally and this needs to be done ASAP.

    The doctor figures that the passage to the intestine is blocked by radiation damage during the treatment for the bile duct cancer tumor that was treated. Life is good. Time to heal.

    I’ve had a blockage problem at the exit from the stomach to the intestine ever since the transplant was done. It steadily grew a little worse each month until it finally became unbearable, and to the point where a gastric bypass that entails a loop of intestine from the stomach to the intestine needs to be built. The liver and the pancreas need to be re-aligned also so its not an easy task. Finally I’ll get the relief I require from this little nightmare!

    I’ll see you in a few weeks.

    Raye

    in reply to: Transplantation in the UK #45730
    raye
    Member

    Raye here.

    I had the Mayo transplant protocol performed in Rochester MN and I’m almost 3 years out from the surgery and doing fine so far. If it was not for the live donor transplant graciously provided by my oldest daughter Jennifer I have my doubts I would be here today. It was very close for my survival up to surgery since I constantly battled malnutrition and jaundice 24/7, and there was practically ‘nothing’ left of any muscle mass on my body because of this.

    The live donor transplant got me back on track within two weeks and I’ve been great ever since, even though the malnutrition effects impeded me for some time after the operation. But I’m here and I consider myself very fortunate.

    The live donor transplant has been used for CC at the UBC hospital in Vancouver and recently a live donor was accomplished at McGill University Hospital in Montreal. These are a great leap from when I was diagnosed in my province of Ontario 4 years ago where I was denied the operation and a live donor. Only through our efforts here at home and through applications to our health system in Ontario did we get the opportunity and the funding to go to the Mayo Clinic in Rochester MN.

    The lack of donations for transplants is very low here in Canada and I don’t know why with the advertising the government and hospitals provide.

    Live donor permission may be the only way to go for any type of transplants in Canada when the governments and medical associations change their outlook on helping transplant patients.

    Merry Christmas everybody!!

    in reply to: ONTARIO, CANADA – Regional Cancer Centre Locations #38543
    raye
    Member

    Marion,

    I’ll poke around on the web and see what I come up with. The closest care to NB would be McGill University Hospital in Montreal. That is an excellent hospital that has the expertise for CC patients.

    in reply to: New to this website #45538
    raye
    Member

    Tommy,

    Where is the CC located so we can help you and your Dad better. Somebody told me I had no hope with my CC. Rubbish. I’m here because I refused to believe their verdict.

    Thats the reason your Dad is still hanging in there.

    in reply to: Sorafenib #45390
    raye
    Member

    Money blocks the way again. Thats a real problem in socialist medical systems is that budgets are always at the mercy of bureaucrats in more ways than you can count. The same problems occur here in Canada and we could discuss this all night long and argue the merits of social medicine and private medicine.

    I’m a Canadian and I was treated at the Mayo Clinic in the U.S. It was there that my health care system of my province did fund my CC and liver transplant costs. Unfortunately I saw many U.S. patients struggle with their private insurers to the point of tears.

    Its 6 of one and half dozen of the other about government and private health care systems.

    Raye

    in reply to: transplants in europe #45361
    raye
    Member

    Epato,

    The Charite’ hospital system in Berlin follows the Mayo protocol. A friend in Toronto I’ve dealt with had her German friend placed in their care and he is now a one year CC transplant survivor.

    Here is the link for info.

    Raye

    http://www.charite.de/en/international/

    in reply to: Any bile duct specific cancer survivors out there? #43754
    raye
    Member

    I’m a Klatskin tumor survivor. Diagnosed Dec.10 2006, my 54th birthday, and entered the Mayo Clinic’s liver transplant protocol in April of 2007. The protocol worked its magic with many episodes of dropping red blood cell counts , blocked j-tubes and bad jaundice, repeating cholangiograms, angiogram, teeth pulling, cracked vertabrae, 1/2 body weight loss, radiation, chemo, etc.etc. and finally the transplant itself on Helen and my 32nd wedding anniversary,March 20, 2008.

    My eldest daughter Jennifer was my live donor donating 60% of her lver on the day of the transplant. She’s my savior and we all love her very much.

    I’m in remission today over 2-1/2 years later. Looking forward to the 5 year remission mark as my gift of life. After that its all a gift.

    in reply to: new here, in trouble #44452
    raye
    Member

    Tom,

    I’ve sent you an e-mail.

    Raye

    in reply to: Mayo newsletter – Bile Duct Cancer #44412
    raye
    Member

    I will support Ashleys observation re: transplant. I am a Klatskin tumor / CC survivor now for over 2-1/2 years. I was probably one of the best candidates the Mayo had for the liver transplant protocol.

    I am more than glad to hear that you have persued the transplant agressively. That was exactly what my wife and I did when I became a CC patient. Fortunately I was a ‘perfect candidate’ if there ever was one for the liver transplant protocol.

    Good luck and keep pushing forward.

    Raye

    in reply to: Taking a vacation #41167
    raye
    Member

    Just GO Rick. GO!!!

    in reply to: recently diagnosed #40449
    raye
    Member

    sallypa,

    My only advice is to continue on the course you are on. Never take a negative opinion. Never give up. I didn’t and I’m still here.

    Good luck and prayers for all of you.

    in reply to: sad news re:live donor transplant #39864
    raye
    Member

    This is a known risk, but a low risk, to the donor when participating in a live donor transplant procedure.

    I can assure you the hospitals take more than just precautions when candidates are finally selected for this surgery. My oldest daughter Jennifer was my live donor and she went through the identical battery of tests I did when I was testing for entry to the Mayo transplant program.

    in reply to: UNOS approves treatment protocol for liver transplantation #40554
    raye
    Member

    Thank you for the post Marion. Now we have another center for transplant. For those in Canada, University of British Columbia Medical Centre is providing liver transplant for CC, McGill University Hospital in Montreal, and apparently over the last year or so the Toronto General Hospital system along with Princess Margaret Hospital has provided several transplants.

    in reply to: New treatment plan #40126
    raye
    Member

    Keep strong Rick and rest up. That radiation sure can put you to sleep. Falling asleep in church is okay too. God knows what you’re treatment is. LOL

    in reply to: Progress Toward an Artificial Liver Transplant, NIH #39778
    raye
    Member

    Marion, I enjoyed myself greatly travelling back home the long way to Canada ( Idaho, Nevada, Utah, Colorado, Death Valley, Grand Canyon, Arches National Park, etc.etc.) Kansas. What a nice bit of country the western states are, and such vivid and unusual terrain. All the little flowers in Death Valley in bloom during the spring are so beautiful, and the sunsets out west are just beyond words.

    I’m so happy to be here for all that I was given during my trip home.

Viewing 15 posts - 1 through 15 (of 74 total)