Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 Hi , Sorry that I didn't answer sooner about the Arava. It worked very well for me, but it added to the decline in white blood cell count that methotrexate had started. I also had the rare side effect of increased cholesterol. I guess my body didn't like methotrexate or Arava, either. Hopefully there'll be something else that your body will like. I'm on Enbrel now, and it's my wonder drug so far. I also live in NC, in son County in the piedmont section. Where are you located? Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2006 Report Share Posted May 25, 2006 Thanks, . I appreciate the prayers and the concern. God bless. Rhue >From: " A. " <queenkellywilliams@...> >Reply- > >Subject: Re: Promised update >Date: Wed, 24 May 2006 11:35:17 -0700 (PDT) > >Rhue, > > I'm sorry to hear that you have had such a rough time of it. I'll add >you to my prayer list and cover you with healing prayers! > > in NC > 5/2/06 - High Point > 305/296.5/275.5 - 29.5 pounds gone! > High/surgery/now > >Rhue Green <rhuegreen_76@...> wrote: > I haven't posted since 4/19/06, at which time I was preparing to undergo >a >routine gall bladder surgery. i had the surgery on 4/20, went home on 4/21 >and did fine for a day or 2. On 4/25/06 I was admitted through the ER to >the >hospital with double pneumonia, pleuresy, dehydration, 2 infected port >sites >with " the smell " , etc. I stayed in the hospital almost 2 weeks (unheard of >these days) and was sent home with home health care for antibiotics IV for >5 >days. A week later I was back in the ER, on Mother's Day, for 7 hours doing >all of the previously run tests plus more. They pretty much left the final >decision to be admitted to me. I asked them to please remove all that > " stuff " off me and let me go home. I still have not driven yet. Tomorrow >will be my first day. I am goiing in for a much needed haircut. I told some >of you I would post after surgery to let you know how things went, so here >it is. I have never been so sick in my life. I am still recouping and have >to go back to the lung specialist in a month. This has been and still is a >long road to recovery. > >I haven't seen any mention of me on the boards, but if anyone sent anything >to me or asked for anything, please forgive me. I eventually got thrown off >when I didn't open any emails for weeks. I hope all of you are doing well >and looking forward to enjoying Memorial Day with family and friends. > >Take care and stay well, >Rhue Green >5/6/04 >Dr. Dasher > >_________________________________________________________________ >Is your PC infected? Get a FREE online computer virus scan from McAfee® >Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2007 Report Share Posted August 16, 2007 When I had mine in March, I was in ICU for 3 days, and then in the regular unit for another 10 days. Honestly, it wasn't great being in the hospital for that long, but I wouldn't have been ready to go home sooner - you will have tubes for quite a few days following surgery, and just need time to get up and get moving around and stuff. As much as you will miss the kids (I certainly did), you won't be ready to deal with them any sooner than that anyway. in NY Re: Re: in NC achalasia > Hi , > > Have you got any idea as to how long you need to be in hospital > normally? I guess over in the States it's different again then > here in The Netherlands. I have been told to be in Intensive Care > for a couple of days, to then stay in hospital for at least 2 to 3 > weeks... Pffffft, being away for 1 week for the myotomy seemed > ages to me, so this one is going to feel like forever I guess... > > Love, > Isabella > > michelle <mcnairmichelle@...> wrote: > Hey Tonia - thanks. I may take you up on the hotel thing > once I get > closer to thinking about a time frame. I'm also thinking I may try > to > find somewhere 1/2 way-ish to stop for a night and rest. I have > family > in WV and northern Va. so that may work. It's going to depend on > how > long I'm in the hospital. I've never been apart from my kids for > more > than 3-4 days. > > Thanks for the offer! > > Happy Swallowing! > - in NC > > > > > > Hey girl- Sorry to hear of what future battles you may be going > up > > against.Let me know if you have any questions about going to > > Cleveland.I can give you details on info with traveling home and > > hotels. > > We are about 8 1/2 hours away and after 's OPEN myotomy and > 8 > > days in ICU he done fine coming home with no pain and he wasnt > taking > > pain meds.I have a Volkswagon Jetta and he put his seat belt > > on,cushioned it with a pillow across his chest and actually laid > in > > the back seat balled up and slept almost the whole time and was > fine > > with that.I know a ectomy is much diffrent but just wanted to > share > > with you our experience with traveling after a little more > serious > > procedure than the normal myotomies. > > Let me know if I can be of any help,you were alot of help to us > and I > > thank you for that. > > Tonia in Va > > > > > > > > > --------------------------------- > Park yourself in front of a world of choices in alternative vehicles. > Visit the Auto Green Center. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2007 Report Share Posted August 17, 2007 > ***Of the people that have had -ectomies recently, how long were you all in and did you have open or lap surgery?? Reply: I was in Mt. Sinai Hosp., NYC, 7 nights total, that included 4 nights intensive care. After I passed the " leak test " to check the anastomosis, I was moved to the step down unit of Mt. Sinai. My esophagectomy was laparoscopic in May 2007. Ginny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2010 Report Share Posted July 28, 2010 Thanks for your story. You've been through a long struggle with this disease, I know the pain and sorrow of it all. For DECADES I never met another soul that could relate to me until I came here. A few years ago a couple of the gals from this group met with me for a star bucks! We had a good time and it just felt wonderful to meet them and feel like I had people that could relate. From that point on, I knew I had to eventually go back and try to find help. I learned early on how to hide this side of my life and appear normal during social settings. Now, I just can't, it's too hard to swallow normally. A friend told me the other day, it's torture to watch you eat...gosh that kinda hurt my feelings, but I think she meant it in a compassionate way. My husband says he feels guilty eating meals with me. He feels that he is stuffing himself with food, while I pick at my plate and drink constant water barely finishing 1/4 of anything set before me. The thought of being able to eat better is an amazing thought!!!! Thanks and take care I will keep you posted, million hugs! Julee So calif. ________________________________ From: zlmmom1 <mcnairmichelle@...> achalasia Sent: Wed, July 28, 2010 6:37:21 AM Subject: Re: Julee in SoCa  Hey Julee - Dr. L does more ectomies than I think ANYONE in the country. I can't prove it but his staff told me that and I believe it. He does 150 ectomies a year - obviously the VAST majority are for cancer so I figured I was just going to be easier for him. He was very good and I'm thrilled with my results. I traveled 10 hours to see him. I started having symptoms in about 1980 at age 12. Got diagnosed finally at age 15, had 2 or 3 dilations then a myo in 1989 at age 20. I had 2 or 3 post-op dilations over the next 5 or so years and then just had routine follow ups every couple of years until 2007 when my E had just gotten so saggy and sigmoid. Glad to be of help. Good luck finding a surgeon and keep us posted. ~ in NC > > Hi , > > I read about Dr. Luketich, he seems like the best doctor around?  I WISH I > could see someone like him!!! I'm so glad that you are doing so well. Did >you > > have A for a long time? Did you ever have the myotomy? What age range are >you > > in? I am now 52 yrs old. I first started having the swallowing issues at >30. > > A life long problem for me. > > > Yours is an amazing story and it sure gives many hope! I am so glad that you > are here and thanks so much for the support. Believe it or not, there is not > that many qualified doctors for A in my area. Most seem to be east. I pray >and > > I just take it one day at a time right now. I'm getting all my info in order >so > > that I can questions a doctor once I finally get to that point. Your help is > very appreciated. > > > Julee, So Calif. > > > > > ________________________________ > From: zlmmom1 <mcnairmichelle@...> > achalasia > Sent: Tue, July 27, 2010 6:59:35 AM > Subject: Julee in SoCa > >  > Hey Julee - my rule of thumb for 'how many myos have you done' is a REAL >answer. > > Not some vague, 'plenty' or 'lots'. When I had my -ectomy, Dr. Luketich gave me > > actual numbers and then expanded on those breaking them down into how many open > > and how many he had done minimally invasive. I agree with though, I > wouldn't step foot near anyone who had done less than say 50 or 100 - where you > > are located, you should have no problem finding a real expert. > > As far as how I'm doing? FABULOUS!! I had an ectomy in Jan. of 2008 and while >it > > was no walk in the park, 2 1/2 years later, I eat even better than I used to - > just smaller portions but I get to eat all day long!! I am at a healthier > weight, I have fewer food restrictions and I have NO MORE SPASMS!! I do take 20 > > mg prilosec daily and still sleep with my wedge but if you didn't know it - > you'd never know I have no E. I truly feel that I no longer have achalasia! > > good luck in your journey and I'm glad you're back - we'll be here for you. > > ~ in NC > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2011 Report Share Posted September 8, 2011 Hi , Just to keep you posted and other parents with school going kids. I did speak with the nurse over the summer and they asked us to have doctor fax over a note that can carry & administer the antacid medicine (Gaviscon) as need, The nurse has a copy and has one with him. Thanks for the suggestion as this will avoid any complication of any kind. Priti ________________________________ From: Preeti Mahajan <priti19.mahajan@...> " achalasia " <achalasia > Sent: Wednesday, August 3, 2011 2:43 PM Subject: Re: Priti  Hi , Thank you for your suggestion. I absolutely agree with you. We will be speaking with the school nurse so she is aware of it. Thanks, Priti ________________________________ From: zlmmom1 <mcnairmichelle@...> achalasia Sent: Sunday, July 31, 2011 9:28 AM Subject: Priti  have you spoken with your sons school yet and set up his medical 504 designation? although the doctor tells you that his spasms will subside and that gaviscon may work - what too many of us here know is that, when discussing spasms - there is never anyway to be sure what's going to happen. Even if finds that the gaviscon works for him, most schools do not allow medications of ANY kind to be carried around without doctors notes. The last thing you want for him is to have a raging spasm and not have anything with him to help. At the very least, you and need to speak with the school nurse - he is not going to want to have to explain what's happening during a spasm. Glad to hear he's recoving well. ~ in NC Quote Link to comment Share on other sites More sharing options...
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