Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 Felicity, sorry to hear you are having such a hard time. There are a few people from Austraila and they might drop a note to you. You need to watch yourself and meke sure you will not get dehydrated. You can have a balloon dilation and that will at least help you untill you can get the surgery. You need to be aware that dilation's and botox treatment can produce scar tissue and that might lower the presentage rate of a successful surgery. It is improtant that you get water and food down. I would suggest realy bothering your doctor and let them know how bad you are getting. You should not have to wait that long if you are in the shape that you are. Most people that have key hole surgery do not stay in hospital that long unless there are some complacations with the surgery. I hope this heps out a little. Please keep us informed of how you are doing and when you will get surgery. in Suffolk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 Thankyou. My name is Felicity and im from melbourne. I have been looking through the site and you seem to have more info where you are then here. For a clearer picture ive lost just under 40 kilos since my son was born can not eat anything at all not even a jelly bean. I cant drink anything except bourbon and told the waiting list is about 2 months. Im having the key hole surgery done and will be in hospital for 4 days. My doctor knows im not keeping water down and i was told i just have to persist and wait for surgery and basically ignored as theres not much more he can do. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 Biljana from Australia -- are you out there? Felicity needs help with getting brought to the front of the list. Others will chime in here, but you need to start rattling cages -- call up and really let the doctor know how desperate this is, how your child needs a healthy mother, call up your political representatives, call the newspaper -- that is what Biljana did and it worked!. Help me remember her story you guys! Peggy > > Thankyou. My name is Felicity and im from melbourne. I have > been looking through the site and you seem to have more info where you > are then here. For a clearer picture ive lost just under 40 kilos > since my son was born can not eat anything at all not even a jelly > bean. I cant drink anything except bourbon and told the waiting list > is about 2 months. Im having the key hole surgery done and will be in > hospital for 4 days. My doctor knows im not keeping water down and i > was told i just have to persist and wait for surgery and basically > ignored as theres not much more he can do. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 Dear Felicity, Hopefully Biljana will help you, maybe we can dig up her old messages, about a year ago. If I may offer some encouragement.... no proof.... but it seems like the worse the symptoms are it may mean it is the earliest stages and treatment is more likely to be successful long term. That is mostly my opinion, based on some comments my gi made. The symptoms seem to moderate over time, but that means your esophagus is more stretched. That doesn't mean you should wait for treatment.... actually you can't. I have to admit when you said bourbon was all you could drink it made me smile, actually cracked me up. Bourbon was my preferred drink in my youth... my grandmother used to say... Bourbon, straight... Irish Catholic from Butte Montana... where St. 's Day is the biggest holiday of the year. Ahhhh memories. Sandy in So Cal.... going back to change my color to St. Patty's green. Now totally in the mood for green beer, who cares about corned beef and cabbage. Fond memories of a college party where we bought a keg of beer, rolled it across our run down college living room carpet, leaving a trail of blue dye across the stained, 20 year old stained yellow shag carpet. By chance there happened to be a bunch of medical students in the units above and below us, my roommate was an art student and I was a business major. You don't take doctors quite so seriously if you knew a few in college, drinking green beer and trying to chase my beautiful blond roommate while they had blue tongues. They didn't get out often. Pretty sure that landlord wasn't happy with us. Oh well. > >> > Thankyou. My name is Felicity and im from melbourne. I have > > been looking through the site and you seem to have more info where you > > are then here. For a clearer picture ive lost just under 40 kilos > > since my son was born can not eat anything at all not even a jelly > > bean. I cant drink anything except bourbon and told the waiting list > > is about 2 months. Im having the key hole surgery done and will be in > > hospital for 4 days. My doctor knows im not keeping water down and i > > was told i just have to persist and wait for surgery and basically > > ignored as theres not much more he can do.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 I wonder how much your doctor knows about this disease and the surgery. What kind of tablets did he say you would have to be on? Why would you need surgery again in two years? There should be a way to get things moving faster for you? Call your local council, contact your local paper something. You need help and you need to get a doctor that knows what is going on with the disease and can give you the best advice. in Suffolk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 Well, you can get a full wrap or partial wrap and that should help in the acid reflux. I understand that the surgery does not cure the disease. It is to help in being able to eat better. I do have an understanding about the waiting time for surgery. That is a big problem you and people here in England have to face. It is a shame that it is that way. There have been several people that have live for 20 plus years after getting the surgery. There is help and if you get it there is no reason that this disease should kill you. Keep your head up things can and will get better. in Suffolk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 I hope they can get things going for you. Where in England? I bet you have felt a lot of relief finding this group. We are glad you did. in Suffolk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 >Ive just went and saw my surgeon and he cannot hurry the waiting list up and told me theres nothing more he can do. I asked him why do i have to spend so long in hospital and he said because they are cutting the layers of the sphinter muscle and are cutting some of the stomach lining to place there they wont send me home till i can drink and handle eating puree food. then i was told ill be on tablets for the rest of my life and will need the operation in another 2 years. If i had private health cover id be in and out but as im public i have to wait. oh well this has been going on for 2 years so whats another couple of months. > Felicity, sorry to hear you are having such a hard time. There are a few > people from Austraila and they might drop a note to you. You need to watch > yourself and meke sure you will not get dehydrated. You can have a balloon > dilation and that will at least help you untill you can get the surgery. You > need to be aware that dilation's and botox treatment can produce scar tissue and > that might lower the presentage rate of a successful surgery. It is > improtant that you get water and food down. I would suggest realy bothering your > doctor and let them know how bad you are getting. You should not have to wait > that long if you are in the shape that you are. Most people that have key > hole surgery do not stay in hospital that long unless there are some > complacations with the surgery. > > I hope this heps out a little. Please keep us informed of how you are doing > and when you will get surgery. > > in Suffolk > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 Well, there is several people around England in the group. So if you come here I think they would enjoy meeting with you. I am glad we could help you out. even if it is just talking or knowing that there are others that know just how you are feeling. in Suffolk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 --- apparently hes the best in melbourne and has only stuffed two operations up by putting a hole in the osophagus. I was told that its still very new in australia and that because its so rare they havent been able to get enough people to do research and different trials. he said ill need it in two years as the operation wont fix the problem. basically he said ill never eat as i used to and will suffer reflux after the operation. the tablets are Tazac which is nizatidine 150mg and the problem is not only the sphinter muscle its my hole osophagus. Then he said that it will eventually kill me. so i was really angry that they first put what i had down to morning sickness then told me i wont see my son grow up then i start my own research and australia is so far behind in the medical field. I dont know if you have heard but hospitals over here are really stuffed up. People that need surgery for a life and death matter are on a two year waiting list as they cant get the doctors, surgeons or nurses to work. A lot of them have come from overseas. In achalasia , muellmeris@... wrote: > > I wonder how much your doctor knows about this disease and the surgery. > What kind of tablets did he say you would have to be on? Why would you need > surgery again in two years? There should be a way to get things moving faster > for you? Call your local council, contact your local paper something. You > need help and you need to get a doctor that knows what is going on with the > disease and can give you the best advice. > > in Suffolk > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 --- my head is held high and im not embarrassed anymore i eat in public (im always near a toilet) and i dont care about comments that i have an eating disorder. That it im going to be on the phone tomorrow and pestering again. my mums family is all in england. In achalasia , muellmeris@... wrote: > > Well, you can get a full wrap or partial wrap and that should help in the > acid reflux. I understand that the surgery does not cure the disease. It is to > help in being able to eat better. I do have an understanding about the > waiting time for surgery. That is a big problem you and people here in England > have to face. It is a shame that it is that way. There have been several > people that have live for 20 plus years after getting the surgery. There is > help and if you get it there is no reason that this disease should kill you. > Keep your head up things can and will get better. > > in Suffolk > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 --- Its a big relief things are so much clearer and a big weight has been lifted off my shoulders. Wokingham, Manchester? mum was born in Belper and sussex. Probably other places i just cant remember cause theres quite a big family. In achalasia , muellmeris@... wrote: > > I hope they can get things going for you. Where in England? I bet you have > felt a lot of relief finding this group. We are glad you did. > > in Suffolk > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Prognosis " Most patients with achalasia can be treated effectively. Achalasia does not reduce life expectancy unless esophageal carcinoma develops. " .... " Cancer of the esophagus occurs as a complication of achalasia in 2-7% of patients. " from http://www.healthatoz.com/healthatoz/Atoz/ency/achalasia.jsp > There have > been several > people that have live for 20 plus years after getting the > surgery. There is > help and if you get it there is no reason that this disease > should kill you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 WHOA! - when you wrote 'Then he said that it will eventually kill me', I had to respond. While there is no cure for 'A', it is also NOT a disease that will kill you if you have proper treatment. A while back in this group, someone posted that you will not die from 'A', but you will die with it. There is no reason anyone with achalasia cannot live a full and happy life. But we do need proper treatment. This surgeon of yours gives me the 'willies'. Is there no way you can see someone else?mike in WI Use Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Or run over by a horse. That is what I always told my mom cause we lived out in the county and she woud never let me go accross the street...lol in Suffolk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 "Cancer of the esophagus occurs as a complication of achalasia in 2-7% of patients." I believe other studies have shown that these numbers could even be artificially inflated because some people actually have the cancer before 'A', or that it is 'secondary achalasia' due to E cancer. I know I saw (sorry, I don't recall where) that some studies even show that there is no significant increase in E cancer occurrence in 'A' patients. mike in WI Travel Find great deals to the top 10 hottest destinations! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Felicity wrote: > ... Then he said that it will eventually kill me. ... If you have secondary achalasia, which is caused by another known disease, then that other disease may kill you. Most of us in this group have primary achalasia, which has no known cause, and most likely will not kill us. A few die from complications such as pneumonia or cancer but most of us will not. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Dear Lord I have had "A" for 18 + years I am 71 Full of life and spunk Yes I have "BAD" days but that doesn't stop me for having a full life And I am gonna live till 100+ My Mom is 95 ........ Stop and smell the roses Cause life is toooo short -- Re: Re: martin in suffolk Felicity wrote:> ... Then he said that it will eventually kill me. ...If you have secondary achalasia, which is caused by another known disease, then that other disease may kill you. Most of us in this group have primary achalasia, which has no known cause, and most likely will not kill us. A few die from complications such as pneumonia or cancer but most of us will not.notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Ca of the esophagus is rare from "A" Hey anything could happen I could get hit by a bus too -- Re: martin in suffolk Prognosis"Most patients with achalasia can be treated effectively. Achalasia does not reduce life expectancy unless esophageal carcinoma develops."...."Cancer of the esophagus occurs as a complication of achalasia in 2-7% of patients."fromhttp://www.healthatoz.com/healthatoz/Atoz/ency/achalasia.jsp> There have> been several> people that have live for 20 plus years after getting the> surgery. There is> help and if you get it there is no reason that this disease> should kill you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 I would dump him but fast I had 2 that I left thanks to this group And THEY were right who is being very out spoken -- Re: Re: martin in suffolk WHOA! - when you wrote 'Then he said that it will eventually kill me', I had to respond. While there is no cure for 'A', it is also NOT a disease that will kill you if you have proper treatment. A while back in this group, someone posted that you will not die from 'A', but you will die with it. There is no reason anyone with achalasia cannot live a full and happy life. But we do need proper treatment. This surgeon of yours gives me the 'willies'. Is there no way you can see someone else?mike in WI Use Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
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