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I have IBS symptoms as well as gastroparesis, so I do understand what you and your "precious" IBS sufferers are going through - I'm not saying that to be sarcastic, I'm saying it because it is the truth.
I am sorry that you don't care for the political statement re: the Bush Administration. Unfortunately, there's nobody but that administration who is controlling this, so who else is to blame? That's all I'll say about that.
Lastly, I am not here to stir up trouble or to offend anyone. What upsets me is when people read 3 words out of a post and then respond to it - if she, you, or anyone else reads the post in its entirety, it will make sense.
Lastly, please do not "chastise" me. If I came across as hostile to her, then I will apologize TO HER, as she is the one I wronged. I have no desire for any hostility in here, whether it's from me to someone else or vice versa. Have a nice day.
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And it would seem as I reread my last few posts that I see how the tone that I'm getting across is one that's snippy, and I didn't mean for it to be quite that blunt. I do apologize....
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To whom?
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First, I would like to thank Bonnie for taking the time to put the information out there about gastroparesis. Yes, we may have been diagnosed, but the majority of us still have NO IDEA why we have Gastroparesis. We have other underlying medical problems that cannot be explained, but they are all believed to come from the same place. The majority of those with no known reason are believed to have either major autoimmune or autonomic nervous system disfunction.
Domperidone is one of the only treatments that GP patients have any good results since the FDA alert, it will be nearly impossible to obtain the medication. Once the medication supply is gone, many of those with GP that are still able to eat with Domperidone will be sentenced to alternative means of nutrition either by feeding tube or via a central access IV solution.
I know the fact that it's been stated there is no cure, I think it also should be known that GP has a mortality rate also. Gastroparesis kills.
Many with Gastroparesis also suffer with severe IBS. The IBS medications make the Gastroparesis even slow down the stomach even more causing even more problems.
Consider going to sleep one night healthy and happy only to wake the next day horribly sick. It can literally attack that quickly with no cause being identified knowing no age, gender or race.
I was a very active wife, mom and ER nurse. I woke up July 1, 2000 with severe nausea, vomiting and abdominal pain. It took 9 weeks to diagnose GP and I lost 65 pounds in that 9 weeks. Within 11 days of being diagnosed, I had my first set of feeding tubes implanted (one in my stomach to drain it's contents and one in the small intestine to feed bypassing the non functioning stomach).
With the treatment options being so limited, I have tried EVERYTHING (the whole 5 or 6 options with 3 of the options involving surgery). Now, I not only have the two feeding tubes, but I also have a central line access for IV therapy and IV medications. The medications are only an attempt to control some of the symptoms. Most days, the medication doesn't even take the edge off enough to be functional.
I have not even made mention of the other symptoms GP patients suffer with like the horrible bloating making one look 7 months pregnant, the fullness after only a bite or two of food, the life threatening electrolyte imbalances, sleep disturbances (it's kind of hard to sleep with unbearable pain and relentless nausea), horrible dental problems due to vomiting and acid reflux and situational depression. We have NO control over our bodies. Recent research by one of the top specialists treating GP patients finds a link between blood clots and gastroparesis also.
Imagine taking the other medications to try to control the horrible symptoms and you have NO idea when or if they are going to take effect since there is no way of telling how long it will take the stomach to empty in order for the medications to absorb.
Gastroparesis patients are very active politically, because no one else is going to take up our cause. We are too sick to go to Washington to lobby to get our medication back (I know IBS patients went to DC to fight for their medication). I personally organized a National Awareness Day for Motility Diseases (namely GP since it's symptoms are far worse than the IBS symptoms). Rather than going to Washington DC, our patients went to the local offices of their elected federal officials. Even with going to the local offices, many couldn't participate, so they wrote letters, sent faxes and emailed.
Currently, GP patients are calling a contact at the FDA to voice the fears of having to live without the medication that is needed so badly. GP patients are also writing letters to their members of Congress, and paying special attention to contact the members of Congress involved with the Digestive Diseases Caucus.
The FIRST International Task Force Meeting on Gastroparesis didn't even occur until May 17, 2003!!!
Whether I agree with the current administration in Washington DC doesn't matter one way or the other. I am not using our plight for a political agenda. All GP patients want is a right to take the medication that has helped some.
I was appalled to read that one respondent to the original Domperidone post accused the horribly ill young woman of trying to use this issue to bad mouth those in Washington DC.
I'm not trying to belittle anyone's medical problems. It's just the gastroparesis patients have a sense of urgency since we know the longer we are sick the more likely we will either die from the gastroparesis or complications of gastroparesis.
I lost 4 GP buddies last year alone. I am tired of burying my friends.
Domperidone does nothing for me, but I will help lead the fight to get the precious drug back.
I know I have rambled, but it's 2:30 AM EST, and I have a procedure scheduled in less than 11 hours due GP related problems. The pain is horrible and I'm still awake. I welcome the sedation tomorrow, because I am guaranteed a few hours of uninterupted sleep.
"Being sick is not a competition, if your illess alters your life in any way, YOU ARE SICK!!!"
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Bless you, bless you, and bless you again. Finally, someone who really understands what we are all going through - and it sounds like you have really SEVERE gastroparesis. I'm not at the feeding tube stage but it's a more than likely possibility.
You said it all so well - I certainly wasn't trying to use the board for my political agenda; I have no agenda. I couldn't care less who was in office - all I know is that myself, and thousands of other people are suffering and scared to death.
I hope that you find some relief soon, somehow...
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Dear Becca,
Thankfully, the tube changes went ok today and I got to get a few hours of drug induced sleep. I'll take sleep anyway I can get it.
It's hard for those that do not suffer with gastroparesis to understand the horrible suffering we go through. I try to educate then move on if they do not catch on.
I know my story sounds horrible, but I am lucky in some ways. Since I have the tubes, I do not have to worry about how I'm going to get calories into my system. I can drain my tummy, so I only throw up 6-8 times daily as compared to nearly all day long before. The central line makes it nice that I can keep myself somewhat hydrated thus I can avoid the ER a little more now.
Rather than concentrating on what's wrong with me, I spend my time trying to help others in the same boat. That's why I am trying to do EVERYTHING possible to help make Domperidone available again to all that suffer. I remember well the days I would run across the border to Windsor, Ontario, Canada to pick up my Domperidone. At least I had the option of trying it even though it didn't help.
If you need anything even if it's only somewhere to vent, feel free to email me privately. I also make my phone number available, so patients can get instant feedback.
You can email me at bethellen1965@comcast.net
Bethellen
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Gastroparesis, I really had no idea what a horrible, debilitating disease this is, and never heard of it before your posts. It must be terrible to suffer this way, not only for you, but also for family and friends who cannot take it away. It was never my intention to come across as heartless and cold. I apologize to you both, and pray for intervention and access to this and other medications you need!
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Thanks for your post. I know that gastroparesis is a hard disease to understand. Even as a nurse, I didn't know what it was until I was diagnosed. My nursing books had one sentence in regards to gastroparesis, so I can understand that people do not know.
I only hope that making others aware will spread through the community as a whole, so we no longer have to explain every detail of our lives.
If you would like to help, go to www.gpda.net and look at the Domperidone and US polical action. Every letter, email or phone call can make a difference.
Thanks for the apology, I know it's hard to understand a disease that leaves a person unable to eat like everyone else.
Bethellen
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Hey guys,
I just got a response from the Washington Post Health editor. Keep an
eye out for next Tuesday's edition of Interactions column.
Just to make sure they don't change their mind, I am asking for ALL
of you to send off an email to the address provided to ensure that
the article will indeed run next Tuesday:
health@w...
Together WE CAN make a difference!!!
This is so exciting!!! This could be the national news story we have
been hoping for. Those on Domperidone need to speak up about how the
Domperidone has changed your life and the fear you are going through
with the thoughts of it being gone!!!
_____________________________________________________________________
For those of you still on Domperidone it's even more important for
you to contact the Post!!!
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Medicare Payments for Elderly to Rise 17 Percent
By Susan Heavey
WASHINGTON (Reuters) - Older Americans will have to pay about 17 percent more next year -- the largest increase in Medicare's history -- for their government-run health insurance, U.S. officials announced on Friday.
Starting in January, the elderly will pay $78.20 per month for non-hospital services, up $11.60 from $66.60 this year, the Centers for Medicare and Medicaid Services said. nearly $80 premium follows the largest annual hike since Medicare began nearly 40 years ago.
According to CMS records, the hike is the largest annual increase since Medicare was established nearly 40 years ago.
Most of the increase will cover the program's new prescription drug coverage and preventive services, including an initial physical exam and other tests, said Mark McClellan, head of the federal health insurance program for the elderly and disabled.
The remaining amount, about 25 percent, will be used to help build up Medicare's trust fund, he said, adding that the higher upfront costs will help save money elsewhere.
"Medicare beneficiaries are saving money. They're paying a little more in premiums, but they're getting more savings in their out-of-pocket costs as a result," McClellan said.
But the premium increase is likely to renew controversy over the cost of the new Medicare law passed last year.
Robert Hayes, president of Medicare Rights Center, called the increase "a body blow to millions of older Americans living on fixed incomes" and blamed it on poor management.
The Congressional Budget Office estimated the bill would cost less than $400 billion over 10 years. But after the bill was signed by President Bush, the administration revealed that its own expert put the cost at $534 billion.
That expert, Medicare actuary Richard Foster, also correctly forecast in March that the 2005 premiums would rise by about 17 percent.
Last year, Medicare premiums rose about 13 percent from $58.70 to $66.60, the second largest hike.
McClellan said the bill's added coverage led to the premium increase but added that he expected next year's increase would "not be as high as this year."
POLITICAL IMPACT
The new law, which included optional prescription drug coverage and a formal study of drug importation, was initially thought to be a boon for Bush's re-election efforts.
But it has faced criticism from Democrats and Republicans alike, as well as from beneficiaries who say the prescription drug card program is confusing.
Democratic presidential candidate John Kerry has blasted the new Medicare law and has called instead for cheaper drugs to be imported from Canada.
Kerry campaign spokesman Phil Singer said the increase showed that Bush had failed to contain health care costs, adding "when it comes to helping seniors, George Bush has proven that he's taking us in the wrong direction."
Singer and others questioned the timing of the administration's annual announcement, which since 2001 has come in October but this year came late on Friday before the Labor Day holiday weekend and just as Hurricane Frances was hitting Florida, home to many retirees.
"We're getting these numbers out as soon as we can," said CMS's McClellan, who said the increases also reflected higher health care costs in general.
David Certner, director of federal affairs for AARP, said older Americans were "picking up a significant part of the tab" of those costs. AARP is the nation's largest organization representing the elderly.
(Additional reporting by Kim Dixon in Chicago)
I know someone got upset about someone saying something about our president. The good thing is we do live in the USA and there is a thing called Freedom of speach!!!
I'm lucky, Medicaid covers my Medicare Part B premium, but I may still have trouble getting all of my medication due to cost.
My IV Zofran makes Zofran in every other form look cheap. So, you figure you deduct 10% plus I am eligible for the $600 credit, and you still come up with TOO MUCH MONEY to survive!!!
Bethellen
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