Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 I wish you well -- MY DILEMMA For those of you who don't know me that well, I have had A for 24 years, an open Heller in 1991, and recently was told by a NY City surgeon that I should have an esophagectomy. He said there is time to wait, but not to wait forever. He could also do the surgery this Sept. He correctly observed that I was not ready to "sacrifice" my E to eat better, and I needed to hear it elsewhere. Please excuse me for not giving the surgeon and gastroenterologists names at the moment. Have your "scorecards" ready please. The DILEMMA Last Friday, an appointment was set up with Dr. H, in Baltimore, (BALT) who did my open Heller in 1991 to see him this Friday in Baltimore at 8:45AM. That day and time cannot be changed. Sunday morning I emailed a surgeon (Dr. S) in Philadelphia (PHIL) and asked him if he could see me late Thursday, or Friday afternoon. He actually emailed back within an hour to see him Thursday at 4:30, and would try to set me up with a gastroenterologist (Dr. G,) for around the same time or on Friday. On Monday I was told an appointment was set up to see Dr. G at 11AM, on Thursday at the same hospital in PHIL. So far, so good. Thurs. 11 AM with Dr. G in PHIL Thurs 4:30 PM with Dr. S. in PHIL Friday 8:45 with Dr. H in BALT But, I used to be a patient of the chief of Gastroenterology at s Hopkins until he retired (even though I am from NY). I knew his successor, (Dr. M) and wanted to see him too. Today I asked if Dr. M could see me on Friday. They told me he was out on Friday, but could see me on Thursday at 3PM. I tentatively accepted the appointment. So, it now looks like this: Thurs. 11 AM with Dr. G in PHIL Thurs 3PM with Dr. M in BALT Thurs 4:30 PM with Dr. S. in PHIL Friday 8:45 with Dr. H in BALT It could take, door to door, about 2 hours to travel, or maybe less, but doctors are notorious for starting appointments late. It cannot remain this way. Thoughts To try to move Dr. S to 9am (from 4:30PM) on Thursday, but he is in the O.R. that morning. To try to move Dr. S. to 12 noon (from 4:30PM) on Thursday. Their office will contact me if they can move me up, but not until Thursday. Dr. M, the GI in BALT is not available on Friday at all. The 3PM seems pretty much fixed. If he had an 8AM appointment time available I might be able see him, then drive the 2 hours to BALT, returning there the next morning to see Dr. H, my surgeon. But Dr. M is not available that morning. The office of Dr. M in BALT said I could drop off all my records, the X-rays and review them. I would have to have a copy of my Xrays made. He is the one who is head of the Gastro Dept at Hopkins and was seen by me a couple of times in the 1990's. In spite of his kindness in emailing me back, since Dr. S, the surgeon and Dr. G, the GI, are friends, perhaps they would be of the same mind (simplistic, I know), and I would not need to see both. If I dropped the appointment with Dr. S at 4:30 PM, Dr. G at 11AM may not take too kindly of my canceling out Dr. S at 4:30. "What am I looking for exactly?" I am looking for a surgeon or GI doctor who might tell me that there is a choice other than an esophagectomy, plain and simple, that maybe a lesser surgical procedure can buy me time, or that there is a new surgery that the FDA will approve in a couple of years that will "fix" me. I am presently 57 years old. The descriptions I have read about the surgery (and I profusely thank those on this Board who have had esophagectomies for describing their surgeries), the possible complications, the mortality rates (various), and the risks involved during and after recoveries, lead me to think that I don't want to be a part of this. Like from NY, who is a generation younger than me, we are basically feeling fine, but want to stay in control of our own destinies. I'm still working (more than full time) and just can't hop in the car all the time to go check out doctors' opinions. What are the risks of doing nothing? What kind of "behavior modification" should I do in order to extend the "life" of my esophagus. How much can this thing stretch before other organs become at risk? Can it ever just stretch so far that it disintegrates? These are some of many questions I have for the doctors. I'm sorry if my description was confusing, and hopefully I did not foul up any of the doctors initials. The doctors who I listed as seeing on Thursday can only be seen on Thursday, and the surgeon I am seeing on Friday can only be seen on Friday. I would like, at some time, to send records to Dr. Patti in CA & Dr. Rice at Cleveland Clinic, of course, including the recent Xrays. If anyone, who has survived this post up to this point, and would like to offer their opinion, which I would value, I would be most appreciative. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 IMy last appt was with a doctor in NY presbeterian Hospital and he said more otr less the same . The next step for me would be an Esophagectomy but if i could live with the A as it is now I should because the esophagectomy would be the last resort for me and it would also be dramatically life changing so if your doc says to wait ...you should wait Just my opinion > > For those of you who don't know me that well, I have had A for 24 years, an > open Heller in 1991, and recently was told by a NY City surgeon that I should > have an esophagectomy. He said there is time to wait, but not to wait > forever. He could also do the surgery this Sept. He correctly observed that I > was not ready to " sacrifice " my E to eat better, and I needed to hear it > elsewhere. > > Please excuse me for not giving the surgeon and gastroenterologists names at > the moment. > > Have your " scorecards " ready please. > > The DILEMMA > > Last Friday, an appointment was set up with Dr. H, in Baltimore, (BALT) who > did my open Heller in 1991 to see him this Friday in Baltimore at 8:45AM. > That day and time cannot be changed. > > Sunday morning I emailed a surgeon (Dr. S) in Philadelphia (PHIL) and asked > him if he could see me late Thursday, or Friday afternoon. He actually > emailed back within an hour to see him Thursday at 4:30, and would try to set me > up with a gastroenterologist (Dr. G,) for around the same time or on Friday. > > On Monday I was told an appointment was set up to see Dr. G at 11AM, on > Thursday at the same hospital in PHIL. > > So far, so good. Thurs. 11 AM with Dr. G in PHIL > Thurs 4:30 PM with Dr. S. in PHIL > Friday 8:45 with Dr. H in BALT > > > But, I used to be a patient of the chief of Gastroenterology at s > Hopkins until he retired (even though I am from NY). I knew his successor, (Dr. M) > and wanted to see him too. Today I asked if Dr. M could see me on Friday. > They told me he was out on Friday, but could see me on Thursday at 3PM. I > tentatively accepted the appointment. > > So, it now looks like this: > > Thurs. 11 AM with Dr. G in PHIL > Thurs 3PM with Dr. M in BALT > Thurs 4:30 PM with Dr. S. in PHIL > Friday 8:45 with Dr. H in BALT > > It could take, door to door, about 2 hours to travel, or maybe less, but > doctors are notorious for starting appointments late. It cannot remain this way. > > > Thoughts > > To try to move Dr. S to 9am (from 4:30PM) on Thursday, but he is in the O.R. > that morning. > > To try to move Dr. S. to 12 noon (from 4:30PM) on Thursday. Their office > will contact me if they can move me up, but not until Thursday. > > Dr. M, the GI in BALT is not available on Friday at all. The 3PM seems > pretty much fixed. If he had an 8AM appointment time available I might be able > see him, then drive the 2 hours to BALT, returning there the next morning to > see Dr. H, my surgeon. But Dr. M is not available that morning. > > The office of Dr. M in BALT said I could drop off all my records, the X-rays > and review them. I would have to have a copy of my Xrays made. He is the > one who is head of the Gastro Dept at Hopkins and was seen by me a couple of > times in the 1990's. > > In spite of his kindness in emailing me back, since Dr. S, the surgeon and > Dr. G, the GI, are friends, perhaps they would be of the same mind > (simplistic, I know), and I would not need to see both. If I dropped the appointment > with Dr. S at 4:30 PM, Dr. G at 11AM may not take too kindly of my canceling > out Dr. S at 4:30. > > " What am I looking for exactly? " > > I am looking for a surgeon or GI doctor who might tell me that there is a > choice other than an esophagectomy, plain and simple, that maybe a lesser > surgical procedure can buy me time, or that there is a new surgery that the FDA > will approve in a couple of years that will " fix " me. I am presently 57 years > old. The descriptions I have read about the surgery (and I profusely thank > those on this Board who have had esophagectomies for describing their > surgeries), the possible complications, the mortality rates (various), and the risks > involved during and after recoveries, lead me to think that I don't want to > be a part of this. > > Like from NY, who is a generation younger than me, we are basically > feeling fine, but want to stay in control of our own destinies. > > I'm still working (more than full time) and just can't hop in the car all > the time to go check out doctors' opinions. > > What are the risks of doing nothing? What kind of " behavior modification " > should I do in order to extend the " life " of my esophagus. How much can this > thing stretch before other organs become at risk? Can it ever just stretch > so far that it disintegrates? These are some of many questions I have for the > doctors. > > I'm sorry if my description was confusing, and hopefully I did not foul up > any of the doctors initials. > > The doctors who I listed as seeing on Thursday can only be seen on Thursday, > and the surgeon I am seeing on Friday can only be seen on Friday. > > > I would like, at some time, to send records to Dr. Patti in CA & Dr. Rice at > Cleveland Clinic, of course, including the recent Xrays. > > > > If anyone, who has survived this post up to this point, and would like to > offer their opinion, which I would value, I would be most appreciative. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 said, How much can this thing stretch before other organs become at risk? In my case it stretched so large that it thinned considerably and began to collapse in on itself, it also was putting pressure on my lungs. This from my Dr's. Can it ever just stretch so far that it disintegrates? These are some of many questions I have for the doctors I don't know if it would disintegrate as much as it would thin to the point of perforation. This is just my opinion. The criteria that my Dr. set forth for me was that together we would make the decision for an esophagectomy and that I would be the one to know when that time came, and it would be based on the quality of my life. When I reached a point where I would decide that I can't live this way anymore. I reached that point age 59, after 40 years. Hoping that you can find the Dr. that will give you the information to know when that time will come. Wishing you the best. F. Attachment: vcard [not shown] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 , Sounds like you are biting off more than you can chew (or swallow, in our case…..LOL……come on, you have to keep your humor or you have nothing). Anyway, I would say, if you can pull off the Philly appts on Thursday and hit the Friday am in Baltimore, then that’s 3 other opinions. I think the additional Thursday appt in Baltimore (the 3pm) just isn’t feasible to fit into the schedule, and you are going to make yourself crazy trying to make it work. Go with the original 3, and see what happens. If you need to make additional appts from there, then so be it. in NY From: achalasia [mailto:achalasia ] On Behalf Of cynmark24@... Sent: Tuesday, August 15, 2006 5:36 PM achalasia Subject: MY DILEMMA For those of you who don't know me that well, I have had A for 24 years, an open Heller in 1991, and recently was told by a NY City surgeon that I should have an esophagectomy. He said there is time to wait, but not to wait forever. He could also do the surgery this Sept. He correctly observed that I was not ready to " sacrifice " my E to eat better, and I needed to hear it elsewhere. Please excuse me for not giving the surgeon and gastroenterologists names at the moment. Have your " scorecards " ready please. The DILEMMA Last Friday, an appointment was set up with Dr. H, in Baltimore, (BALT) who did my open Heller in 1991 to see him this Friday in Baltimore at 8:45AM. That day and time cannot be changed. Sunday morning I emailed a surgeon (Dr. S) in Philadelphia (PHIL) and asked him if he could see me late Thursday, or Friday afternoon. He actually emailed back within an hour to see him Thursday at 4:30, and would try to set me up with a gastroenterologist (Dr. G,) for around the same time or on Friday. On Monday I was told an appointment was set up to see Dr. G at 11AM, on Thursday at the same hospital in PHIL. So far, so good. Thurs. 11 AM with Dr. G in PHIL Thurs 4:30 PM with Dr. S. in PHIL Friday 8:45 with Dr. H in BALT But, I used to be a patient of the chief of Gastroenterology at s Hopkins until he retired (even though I am from NY). I knew his successor, (Dr. M) and wanted to see him too. Today I asked if Dr. M could see me on Friday. They told me he was out on Friday, but could see me on Thursday at 3PM. I tentatively accepted the appointment. So, it now looks like this: Thurs. 11 AM with Dr. G in PHIL Thurs 3PM with Dr. M in BALT Thurs 4:30 PM with Dr. S. in PHIL Friday 8:45 with Dr. H in BALT It could take, door to door, about 2 hours to travel, or maybe less, but doctors are notorious for starting appointments late. It cannot remain this way. Thoughts To try to move Dr. S to 9am (from 4:30PM) on Thursday, but he is in the O.R. that morning. To try to move Dr. S. to 12 noon (from 4:30PM) on Thursday. Their office will contact me if they can move me up, but not until Thursday. Dr. M, the GI in BALT is not available on Friday at all. The 3PM seems pretty much fixed. If he had an 8AM appointment time available I might be able see him, then drive the 2 hours to BALT, returning there the next morning to see Dr. H, my surgeon. But Dr. M is not available that morning. The office of Dr. M in BALT said I could drop off all my records, the X-rays and review them. I would have to have a copy of my Xrays made. He is the one who is head of the Gastro Dept at Hopkins and was seen by me a couple of times in the 1990's. In spite of his kindness in emailing me back, since Dr. S, the surgeon and Dr. G, the GI, are friends, perhaps they would be of the same mind (simplistic, I know), and I would not need to see both. If I dropped the appointment with Dr. S at 4:30 PM, Dr. G at 11AM may not take too kindly of my canceling out Dr. S at 4:30. " What am I looking for exactly? " I am looking for a surgeon or GI doctor who might tell me that there is a choice other than an esophagectomy, plain and simple, that maybe a lesser surgical procedure can buy me time, or that there is a new surgery that the FDA will approve in a couple of years that will " fix " me. I am presently 57 years old. The descriptions I have read about the surgery (and I profusely thank those on this Board who have had esophagectomies for describing their surgeries), the possible complications, the mortality rates (various), and the risks involved during and after recoveries, lead me to think that I don't want to be a part of this. Like from NY, who is a generation younger than me, we are basically feeling fine, but want to stay in control of our own destinies. I'm still working (more than full time) and just can't hop in the car all the time to go check out doctors' opinions. What are the risks of doing nothing? What kind of " behavior modification " should I do in order to extend the " life " of my esophagus. How much can this thing stretch before other organs become at risk? Can it ever just stretch so far that it disintegrates? These are some of many questions I have for the doctors. I'm sorry if my description was confusing, and hopefully I did not foul up any of the doctors initials. The doctors who I listed as seeing on Thursday can only be seen on Thursday, and the surgeon I am seeing on Friday can only be seen on Friday. I would like, at some time, to send records to Dr. Patti in CA & Dr. Rice at Cleveland Clinic, of course, including the recent Xrays. If anyone, who has survived this post up to this point, and would like to offer their opinion, which I would value, I would be most appreciative. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 , Goodness knows how you can manage that diary clash. But on your other points; As you know I too am facing this. I decided not to go for the "official" second opinion, although technically my GI doctor and then the Upper GI surgeon both agreed that it was the only real option. Like yourself I have been told this is not too urgent, although some times I am so bad I wonder how bad urgent is. Again, like yourself I do not want this procedure. The thought terrifies me and any conversations about it bring me into a cold sweat. But I know something needs to be done. My oesophagus is affecting other organs, I am breathless this morning as either My oesophagus is occupying the space my lungs wants to be in or I have inhailed (unlikely). I think I also have some malnutrition going on as I feel quite rough this morning. I strongly suggest you keep a diary of how you are feeling. This really is helping me come to terms with the pathway that I am on. I traffic light each day into green, amber or red. Red is I have to do something, amber is Hmmm possibly, green is I'm fine (I have a slightly more complicated system behined that). I have kept it on an excell spread sheet and there is just far too much red on it for my liking. The decision I made with my surgeon was to have the procedure but to wait several months (November). I could then use this time to check with myself that I had made the right decision as I found this easier than still trying to decide what to do. It's just a small play on psychology but it has helped me. Also, the long lead in time is also so that I can suffer slightly this is only so that should I have a post operative complication I do not get angry for having the procedure. I really need to know for myself that there is no othger choice. People search for second opinions for many reasons and sometimes people don't stop until they find the message they are looking for and this isn't necessarily the right opinion. In my case it wasn't so much the words in that I found a surgeon I trusted. I know that professionally he can not offer this procedure if the benefits did not out weigh the risks. Please do find someone you trust rather than find someone who says the right thing. I hope this makes sense. All the best, keep us updated. STEVE (Terrifiied of London) MY DILEMMA For those of you who don't know me that well, I have had A for 24 years, an open Heller in 1991, and recently was told by a NY City surgeon that I should have an esophagectomy. He said there is time to wait, but not to wait forever. He could also do the surgery this Sept. He correctly observed that I was not ready to "sacrifice" my E to eat better, and I needed to hear it elsewhere. Please excuse me for not giving the surgeon and gastroenterologists names at the moment. Have your "scorecards" ready please. The DILEMMA Last Friday, an appointment was set up with Dr. H, in Baltimore, (BALT) who did my open Heller in 1991 to see him this Friday in Baltimore at 8:45AM. That day and time cannot be changed. Sunday morning I emailed a surgeon (Dr. S) in Philadelphia (PHIL) and asked him if he could see me late Thursday, or Friday afternoon. He actually emailed back within an hour to see him Thursday at 4:30, and would try to set me up with a gastroenterologist (Dr. G,) for around the same time or on Friday. On Monday I was told an appointment was set up to see Dr. G at 11AM, on Thursday at the same hospital in PHIL. So far, so good. Thurs. 11 AM with Dr. G in PHIL Thurs 4:30 PM with Dr. S. in PHIL Friday 8:45 with Dr. H in BALT But, I used to be a patient of the chief of Gastroenterology at s Hopkins until he retired (even though I am from NY). I knew his successor, (Dr. M) and wanted to see him too. Today I asked if Dr. M could see me on Friday. They told me he was out on Friday, but could see me on Thursday at 3PM. I tentatively accepted the appointment. So, it now looks like this: Thurs. 11 AM with Dr. G in PHIL Thurs 3PM with Dr. M in BALT Thurs 4:30 PM with Dr. S. in PHIL Friday 8:45 with Dr. H in BALT It could take, door to door, about 2 hours to travel, or maybe less, but doctors are notorious for starting appointments late. It cannot remain this way. Thoughts To try to move Dr. S to 9am (from 4:30PM) on Thursday, but he is in the O.R. that morning. To try to move Dr. S. to 12 noon (from 4:30PM) on Thursday. Their office will contact me if they can move me up, but not until Thursday. Dr. M, the GI in BALT is not available on Friday at all. The 3PM seems pretty much fixed. If he had an 8AM appointment time available I might be able see him, then drive the 2 hours to BALT, returning there the next morning to see Dr. H, my surgeon. But Dr. M is not available that morning. The office of Dr. M in BALT said I could drop off all my records, the X-rays and review them. I would have to have a copy of my Xrays made. He is the one who is head of the Gastro Dept at Hopkins and was seen by me a couple of times in the 1990's. In spite of his kindness in emailing me back, since Dr. S, the surgeon and Dr. G, the GI, are friends, perhaps they would be of the same mind (simplistic, I know), and I would not need to see both. If I dropped the appointment with Dr. S at 4:30 PM, Dr. G at 11AM may not take too kindly of my canceling out Dr. S at 4:30. "What am I looking for exactly?" I am looking for a surgeon or GI doctor who might tell me that there is a choice other than an esophagectomy, plain and simple, that maybe a lesser surgical procedure can buy me time, or that there is a new surgery that the FDA will approve in a couple of years that will "fix" me. I am presently 57 years old. The descriptions I have read about the surgery (and I profusely thank those on this Board who have had esophagectomies for describing their surgeries), the possible complications, the mortality rates (various), and the risks involved during and after recoveries, lead me to think that I don't want to be a part of this. Like from NY, who is a generation younger than me, we are basically feeling fine, but want to stay in control of our own destinies. I'm still working (more than full time) and just can't hop in the car all the time to go check out doctors' opinions. What are the risks of doing nothing? What kind of "behavior modification" should I do in order to extend the "life" of my esophagus. How much can this thing stretch before other organs become at risk? Can it ever just stretch so far that it disintegrates? These are some of many questions I have for the doctors. I'm sorry if my description was confusing, and hopefully I did not foul up any of the doctors initials. The doctors who I listed as seeing on Thursday can only be seen on Thursday, and the surgeon I am seeing on Friday can only be seen on Friday. I would like, at some time, to send records to Dr. Patti in CA & Dr. Rice at Cleveland Clinic, of course, including the recent Xrays. If anyone, who has survived this post up to this point, and would like to offer their opinion, which I would value, I would be most appreciative. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2011 Report Share Posted October 29, 2011 Have you contacted your local independent living center? Here's the list: http://www.ilru.org/html/publications/directory/index.html > > So after 14 months of service my home care company is dumping me on Monday. They said their making no money on my case, and don't want the responsibility of my care. I have called tons of home care agencies and none will take me because the state pays so little ($13.50. I believe the state will pay a care giver directly, but am having difficulty finding info on it, and my case manager is one of those social workers who doesn't answer their phone or email. Where do you find good pca's who will only work for $8 an hour? I'm so afraid of being institutionalized or placed in a group home. How do you all find and pay for help? Thank you Doug > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2011 Report Share Posted October 29, 2011 Sounds a very scary position, sorry to hear you are having to go through this doug. How many hours do you get a day? Any room to actually have less hours and use the money saved to pay bit more for the actual hours you do use? I think if I was in this tricky spot I might have to look to see if there was another PA user I could pool limited resources with or maybe even house share with. Thinking of you On Saturday, 29 October 2011, <doug696@...> wrote: > > > So after 14 months of service my home care company is dumping me on Monday. They said their making no money on my case, and don't want the responsibility of my care. I have called tons of home care agencies and none will take me because the state pays so little ($13.50. I believe the state will pay a care giver directly, but am having difficulty finding info on it, and my case manager is one of those social workers who doesn't answer their phone or email. Where do you find good pca's who will only work for $8 an hour? I'm so afraid of being institutionalized or placed in a group home. How do you all find and pay for help? Thank you Doug > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2011 Report Share Posted October 29, 2011 What state are you in doug? On 10/29/11 3:35 PM, " Moss " <lindajmoss@...> wrote: > Sounds a very scary position, sorry to hear you are having to go through > this doug. > > How many hours do you get a day? Any room to actually have less hours and > use the money saved to pay bit more for the actual hours you do use? > > I think if I was in this tricky spot I might have to look to see if there > was another PA user I could pool limited resources with or maybe even house > share with. > > Thinking of you > > > On Saturday, 29 October 2011, <doug696@...> wrote: >> >> >> So after 14 months of service my home care company is dumping me on > Monday. They said their making no money on my case, and don't want the > responsibility of my care. I have called tons of home care agencies and none > will take me because the state pays so little ($13.50. I believe the state > will pay a care giver directly, but am having difficulty finding info on it, > and my case manager is one of those social workers who doesn't answer their > phone or email. Where do you find good pca's who will only work for $8 an > hour? I'm so afraid of being institutionalized or placed in a group home. > How do you all find and pay for help? Thank you Doug >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2011 Report Share Posted October 29, 2011 Doug, I am so sorry this is happening to you. My agency has always supplied my aids with no problem. But there is a program where you can hire your own aids and the state pays the money to you. You could look into using that option and you could probably pay more to your aids You should see if that is available in your state. ---- <doug696@...> wrote: > So after 14 months of service my home care company is dumping me on Monday. They said their making no money on my case, and don't want the responsibility of my care. I have called tons of home care agencies and none will take me because the state pays so little ($13.50. I believe the state will pay a care giver directly, but am having difficulty finding info on it, and my case manager is one of those social workers who doesn't answer their phone or email. Where do you find good pca's who will only work for $8 an hour? I'm so afraid of being institutionalized or placed in a group home. How do you all find and pay for help? Thank you Doug > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2011 Report Share Posted October 30, 2011 I’m in Michigan. I get 128 hours a month. The problem seems to be no one wants 1 hr shifts (my morning and bed). Most of my girls have been within half to 1 mile distance so they didn’t mind. Hopefully my advocate will have some encouraging news tomorrow. I have 3 tentative people lined up for Tuesday but that’s strictly out of pocket, I can only afford to do that a couple days tho. Can a home care co. just drop someone if they don’t have a new one lined up? Apparently yes since I’m about to find out tomorrow lol. Thanks everyone Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2011 Report Share Posted October 30, 2011 I get 84 hours a month. I need to be for extra hours privately. I think you are lucky to get 128 hrs. ________________________________ From: Doug <doug696@...> Sent: Sunday, October 30, 2011 5:36 PM Subject: Re: My Dilemma  I’m in Michigan. I get 128 hours a month. The problem seems to be no one wants 1 hr shifts (my morning and bed). Most of my girls have been within half to 1 mile distance so they didn’t mind. Hopefully my advocate will have some encouraging news tomorrow. I have 3 tentative people lined up for Tuesday but that’s strictly out of pocket, I can only afford to do that a couple days tho. Can a home care co. just drop someone if they don’t have a new one lined up? Apparently yes since I’m about to find out tomorrow lol. Thanks everyone Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2011 Report Share Posted October 30, 2011 Hmm I personally dont think either of you sound lucky to have less than 5 hours of assistance a day if you need the level assistance I do as a 48 year old with sma 2. On Monday, 31 October 2011, Aul Pedajas <aulpedajas@...> wrote: > > > I get 84 hours a month. I need to be for extra hours privately. I think you are lucky to get 128 hrs. > > ________________________________ > From: Doug <doug696@...> > > Sent: Sunday, October 30, 2011 5:36 PM > Subject: Re: My Dilemma > > > I’m in Michigan. I get 128 hours a month. The problem seems to be no one wants 1 hr shifts (my morning and bed). Most of my girls have been within half to 1 mile distance so they didn’t mind. Hopefully my advocate will have some encouraging news tomorrow. I have 3 tentative people lined up for Tuesday but that’s strictly out of pocket, I can only afford to do that a couple days tho. Can a home care co. just drop someone if they don’t have a new one lined up? Apparently yes since I’m about to find out tomorrow lol. Thanks everyone Doug > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2011 Report Share Posted October 30, 2011 I agree. I am also 48 and I have SMA 2. ________________________________ From: Moss <lindajmoss@...> " " < > Sent: Sunday, October 30, 2011 9:28 PM Subject: Re: My Dilemma Hmm I personally dont think either of you sound lucky to have less than 5 hours of assistance a day if you need the level assistance I do as a 48 year old with sma 2. On Monday, 31 October 2011, Aul Pedajas <aulpedajas@...> wrote: > > > I get 84 hours a month. I need to be for extra hours privately. I think you are lucky to get 128 hrs. > > ________________________________ > From: Doug <doug696@...> > > Sent: Sunday, October 30, 2011 5:36 PM > Subject: Re: My Dilemma > > > I’m in Michigan. I get 128 hours a month. The problem seems to be no one wants 1 hr shifts (my morning and bed). Most of my girls have been within half to 1 mile distance so they didn’t mind. Hopefully my advocate will have some encouraging news tomorrow. I have 3 tentative people lined up for Tuesday but that’s strictly out of pocket, I can only afford to do that a couple days tho. Can a home care co. just drop someone if they don’t have a new one lined up? Apparently yes since I’m about to find out tomorrow lol. Thanks everyone Doug > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2011 Report Share Posted October 30, 2011 If I am not mistaken - they can not drop you as a client with out giving you ample time to get a replacement (I think at the very least 2 weeks)I had one agency tell me they were going to drop me because I made to many demands on them. (Sorry but I am not about to go to bed at 8pm and not get up until 8 or 9 the next day and a few other limitations they wanted to put on me) Then I also had another agency tell me they were going to drop me for the same reason and the fact that I wouldn't let one of the workers in. She was over 2 hours early and sorry but I wasn't having it. Well she called her boss and her boss told her to come back and tell me that I HAD to let her in. I told her I didn't HAVE to do any such thing. Well she started cursing at me and peeled out of my parking lot. Went and called her boss again this time her boss called me. I told her the same thing. I called one of my other girls and she said she was on her way and not to let her in til she got there (they didn't work for the same company) So when she got there I let the other girl in while my other girl witnessed how the other girl was acting. I let her in finally and she was mad as hell. I told her " You do not and will not curse at me in my house and you may leave. " My other girl just stood there didn't do anything basically letting me handle her and stood by in case she needed to step in. (the crazy one had no Idea who this person was that I had standing in my kitchen waiting to take her down if need be lol) anyway she was refusing to leave and I told her that we can do this the easy way or the hard way the choice was hers. She decided to leave LOL Well I got a call from her boss telling me they were gonna drop me. I told them you CAN NOT drop me that would be putting my life in danger and that is abandonment. You have to give me time to replace you and if that takes a month then it takes a month. I told both agencies this (both agencies didn't work for me at the same time) The first agency didn't mess with me too much because they knew how I fought and learned I fight hard. Plus I was on the advocacy committee for Aging and Long Term Care of Eastern Washington. Which the agencies head person recommended me to them for election (which when interviewed they elected me in) anyway my point is.....Say what you mean and Mean what you say! True or not as far as I am concerned it is all in how much fight you have in you. The only thing is - when you say something you must be willing to put forth the effort in backing what you say. Like one time I told my landlord that he could NOT kick me out of my house when I haven't done anything wrong or violated the lease in anyway and that if he choose to pursue the matter that I could make him find me a house equally accessible and for the same price I was paying him. (That was impossible in the small town that I lived in lol) None of what I said was true - he was the owner and could kick me out for any reason he wanted to lol Well Century 21 which were his property managers believed me. The man decided to put his house up for sale and I told him the same thing. Well they were selling the house for $60,000 - Shall I tell you he sold the house to me for $20,000 - the value of just the land the house was on lol (He was pissed cuz i kept making him fix or replace my fridge that kept breaking)So don't panic - just fight like you are fighting for your life because basically you are! > > I get 84 hours a month. I need to be for extra hours privately. I think you are lucky to get 128 hrs. > > > > ________________________________ > From: Doug <doug696@...> > > Sent: Sunday, October 30, 2011 5:36 PM > Subject: Re: My Dilemma > > >  > I’m in Michigan. I get 128 hours a month. The problem seems to be no one wants 1 hr shifts (my morning and bed). Most of my girls have been within half to 1 mile distance so they didn’t mind. Hopefully my advocate will have some encouraging news tomorrow. I have 3 tentative people lined up for Tuesday but that’s strictly out of pocket, I can only afford to do that a couple days tho. Can a home care co. just drop someone if they don’t have a new one lined up? Apparently yes since I’m about to find out tomorrow lol. Thanks everyone Doug > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2011 Report Share Posted October 30, 2011 I am 48 and have SMA3 ******************************** Never mistake MOTION for ACTION ******************************** http://www.myspace.com/kayspalace http://www.angelfire.com/sd/LP35/home.html > > > I get 84 hours a month. I need to be for extra hours privately. I think you are lucky to get 128 hrs. > > ________________________________ > From: Doug <doug696@...> > > Sent: Sunday, October 30, 2011 5:36 PM > Subject: Re: My Dilemma > > > I’m in Michigan. I get 128 hours a month. The problem seems to be no one wants 1 hr shifts (my morning and bed). Most of my girls have been within half to 1 mile distance so they didn’t mind. Hopefully my advocate will have some encouraging news tomorrow. I have 3 tentative people lined up for Tuesday but that’s strictly out of pocket, I can only afford to do that a couple days tho. Can a home care co. just drop someone if they don’t have a new one lined up? Apparently yes since I’m about to find out tomorrow lol. Thanks everyone Doug > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2011 Report Share Posted October 31, 2011 Alana, you need to tutor us what to expect from an independent living center. I haven't figured out what ours do, except answer the phone. Pamela, is there such a program in our state? I could get much better help without the agency! My agency cannot get and keep people for me. It's 5-6 hour shifts, morning and evening, and the workers say it doesn't pay to come for that little amount. Yes, I'm in the country so they must drive to get here. I had a no-show-no-call yesterday morning, and she KNEW I was teaching Sunday School that morning. . Yes, I started with 3 hours a day. Took about 7 years to get these hours. It's ridiculous, but that's the system dance. Doug, call the Medicaid office above the case manager 's head? If she doesn't help? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2011 Report Share Posted October 31, 2011 They actually abandoned me this afternoon with no food or way to use the toilet........... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2011 Report Share Posted October 31, 2011 Doug, this group will know if the agency can dump you like that: http://www.mpas.org/HomePage.asp > > They actually abandoned me this afternoon with no food or way to use the toilet........... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2011 Report Share Posted October 31, 2011 Hi Doug, I don't know if this will help but this website has a list of various agencies in Michigan related to personal care: http://www.pascenter.org/state_based_stats/agencies_home.php?title=Agencies%20Re\ lated%20to%20PAS & state=michigan Alice > > > > > > > > > I get 84 hours a month. I need to be for extra hours privately. I think > > you are lucky to get 128 hrs. > > > > > > ________________________________ > > > From: Doug <doug696@...> > > > > > > Sent: Sunday, October 30, 2011 5:36 PM > > > Subject: Re: My Dilemma > > > > > > > > > I’m in Michigan. I get 128 hours a month. The problem seems to be no one > > wants 1 hr shifts (my morning and bed). Most of my girls have been within > > half to 1 mile distance so they didn’t mind. Hopefully my advocate will have > > some encouraging news tomorrow. I have 3 tentative people lined up for > > Tuesday but that’s strictly out of pocket, I can only afford to do that a > > couple days tho. Can a home care co. just drop someone if they don’t have a > > new one lined up? Apparently yes since I’m about to find out tomorrow lol. > > Thanks everyone Doug > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2011 Report Share Posted October 31, 2011 OMG!! Are you OK From: Doug <doug696@...> Subject: Re: My Dilemma Date: Monday, October 31, 2011, 1:55 PM Â They actually abandoned me this afternoon with no food or way to use the toilet........... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2011 Report Share Posted October 31, 2011 Wow, I feel blessed to be living in California where I get 272.9 hours per month of attendant care. (It used to be 283 hours, but our budget crisis took a bite out of it.) Even with that, most people use less hours in order to pay a better hourly rate. It's never easy to get someone for an hour, but I look for students or young moms to whom a little extra cash means a lot. Sometimes even advertise at churches. As for agencies - anathema! Hate them and haven't used one in over 20 years, though I realize not everyone has that choice. Praying for you as you search, Ellyn > > I’m in Michigan. I get 128 hours a month. The problem seems to be no one wants 1 hr shifts (my morning and bed). Most of my girls have been within half to 1 mile distance so they didn’t mind. Hopefully my advocate will have some encouraging news tomorrow. I have 3 tentative people lined up for Tuesday but that’s strictly out of pocket, I can only afford to do that a couple days tho. Can a home care co. just drop someone if they don’t have a new one lined up? Apparently yes since I’m about to find out tomorrow lol. Thanks everyone Doug > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2011 Report Share Posted October 31, 2011 Yes, my 279.7 hours here are precious. And I'm grateful that my partner can supplement for additional hours I need. Keep us posted, Doug. > > Wow, I feel blessed to be living in California where I get 272.9 hours per month of attendant care. (It used to be 283 hours, but our budget crisis took a bite out of it.) Even with that, most people use less hours in order to pay a better hourly rate. It's never easy to get someone for an hour, but I look for students or young moms to whom a little extra cash means a lot. Sometimes even advertise at churches. As for agencies - anathema! Hate them and haven't used one in over 20 years, though I realize not everyone has that choice. > Praying for you as you search, Ellyn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 Doug, Where in Michigan do you live? Do you have family nearby? Please let us know if you are okay. Amy Re: My Dilemma They actually abandoned me this afternoon with no food or way to use the toilet........... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 Just letting the state pay my workers directly is not without its woes either I’m finding, my one lady is already balking because their only paid monthly and she’s losing a dollar an hour. Starting today I’ll be paying $40 a day til things kick in, I just can’t do it. I tell ya I have never felt so alone and abandoned in my life. Special thanks to everyone who sent links and words of encouragement. Well back to the phone and my list of agencies.....Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 Sending positive vibes doug. If you send me your pay pal details I can send you $40 to buy you another day to fight for your freedom. On Tuesday, 1 November 2011, Doug <doug696@...> wrote: > > > Just letting the state pay my workers directly is not without its woes either I’m finding, my one lady is already balking because their only paid monthly and she’s losing a dollar an hour. Starting today I’ll be paying $40 a day til things kick in, I just can’t do it. I tell ya I have never felt so alone and abandoned in my life. Special thanks to everyone who sent links and words of encouragement. Well back to the phone and my list of agencies.....Doug > > Quote Link to comment Share on other sites More sharing options...
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