Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Hi Bug, I was just wondering how your pulmo appointment went. Have you been able to get a bi-pap or v-pap, and is it working? I have been thinking about you, hoping that you can breathe easier Keep Smiling, Nikki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 Hi Nikki, that was nice of you to ask. My doc cancelled my pulmo appt. since she had already decided she couldn't help my condition. Unfortunately, no one from the office told me so I showed up anyway ! I asked if the doc could still see me given that I had been recently hospitalized for pneumonia and I wanted to discuss what the insurance company said about approving my bi-pap. The doc refused to see me. She said she was too busy and that I could make an appt after she returns from maturnity leave in August. I guess I'm lucky that my breathing hasn't gotten worse. I'm just extremely fatigued and haven't really bounced back after the infection in Feb. How has everything been with you ? I'm finding I don't check the group very often. Too tired and too much joint pain to sit in front of the computer ya know ? Anyway, thanks so much for thinking of me and I'll send happy thoughts your way as well. bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 Bug, That doesn't sound like much fun! They could have least told you the appointment was canceled. I really hope that when you do get to see her, that she and you can come up with a solution that will help you breathe easier. It can be scary to have that feeling that you aren't getting enough air. I am doing pretty good! I am walking more with my walker, and up to an hour and 45 minutes off the vent. That is a big improvement for me. In fact, I have a PT consult soon (hopefully) where the PT is going to help me decide between forearm crutches and 2 quad canes for the next step with my walking. This will get me one step closer to once again walking independantly, so I am very excited!! I will be thinking of you and I hope that the breathing doesn't get worse before you can see the pulmo again. Keep Smiling, Nikki > Hi Nikki, that was nice of you to ask. My doc cancelled my pulmo > appt. since she had already decided she couldn't help my condition. > Unfortunately, no one from the office told me so I showed up > anyway ! I asked if the doc could still see me given that I had > been recently hospitalized for pneumonia and I wanted to discuss > what the insurance company said about approving my bi-pap. The doc > refused to see me. She said she was too busy and that I could make > an appt after she returns from maturnity leave in August. I guess > I'm lucky that my breathing hasn't gotten worse. I'm just extremely > fatigued and haven't really bounced back after the infection in Feb. > > How has everything been with you ? I'm finding I don't check the > group very often. Too tired and too much joint pain to sit in front > of the computer ya know ? Anyway, thanks so much for thinking of me > and I'll send happy thoughts your way as well. > > bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 Bug, All I want to say is your pulmo is a disgrace. There is no other word for it. Can you change? Yikes! Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 Nikki I am pleased to hear you are able to be off the vent and walking some. I would recommend the forearm crutches. I feel you can manuver better with them and your hands can be free to pay for something and still lean on them for balance. Just my opinion. laurie > > Reply-To: > Date: Tue, 08 Jun 2004 22:44:40 -0000 > To: > Subject: Re: Bug -pulmo appointment > > Bug, > That doesn't sound like much fun! They could have least told you the > appointment was canceled. I really hope that when you do get to see > her, that she and you can come up with a solution that will help you > breathe easier. It can be scary to have that feeling that you aren't > getting enough air. > > I am doing pretty good! I am walking more with my walker, and up to > an hour and 45 minutes off the vent. That is a big improvement for > me. In fact, I have a PT consult soon (hopefully) where the PT is > going to help me decide between forearm crutches and 2 quad canes for > the next step with my walking. This will get me one step closer to > once again walking independantly, so I am very excited!! > > I will be thinking of you and I hope that the breathing doesn't get > worse before you can see the pulmo again. > > Keep Smiling, > Nikki > > >> Hi Nikki, that was nice of you to ask. My doc cancelled my pulmo >> appt. since she had already decided she couldn't help my > condition. >> Unfortunately, no one from the office told me so I showed up >> anyway ! I asked if the doc could still see me given that I had >> been recently hospitalized for pneumonia and I wanted to discuss >> what the insurance company said about approving my bi-pap. The doc >> refused to see me. She said she was too busy and that I could make >> an appt after she returns from maturnity leave in August. I guess >> I'm lucky that my breathing hasn't gotten worse. I'm just > extremely >> fatigued and haven't really bounced back after the infection in Feb. >> >> How has everything been with you ? I'm finding I don't check the >> group very often. Too tired and too much joint pain to sit in > front >> of the computer ya know ? Anyway, thanks so much for thinking of > me >> and I'll send happy thoughts your way as well. >> >> bug > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 Congrats Nikki on your huge accomplishment ! You should be so proud of yourself. I was able to use a cane for a while until I improved my balance (through exercise) and now I rarely use it. Only when I'm having a flare up of my hip bursitis. It's good to set little goals for yourself when it comes to mobility. I think most people can make improvements however small. It's hard work as you well know and it seems like forever just to make those small accomplishments but it can mean the difference in where you're able to go or how dependent you are on others. Big hugs for your ongoing success, bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 Alice, I've seen 5 total pulmo docs and they've all said the same thing bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 WHY on earth do they say they can't help you? What on earth is their reasoning? This I've gotta hear. venomvw wrote: >Alice, I've seen 5 total pulmo docs and they've all said the same >thing > >bug > > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 They've said it's a sub-cellular problem that's causing my breathing difficulty and neuro needs to work on it. Neuro says there is nothing more they can offer me since the cocktail didn't work and cardiology has the same philosophy as pulmo. All of my testing has come out fairly normal so that's their justification. Everyone feels like my rheumatologist can keep track of me every three months so they'll read her report. Naturally, my rheumatologist is changing after two years with a highly respected doc ! Don't know what/who I'll be getting. Thankfully I still have my GI and physical med docs who are doing an excellent job. bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 Hi Bug, I know I am jumping in here late but would you mind describing your breathing problems again? I can't remember what they were, thanks with smiles, Re: Bug -pulmo appointment > They've said it's a sub-cellular problem that's causing my breathing > difficulty and neuro needs to work on it. Neuro says there is > nothing more they can offer me since the cocktail didn't work and > cardiology has the same philosophy as pulmo. All of my testing has > come out fairly normal so that's their justification. Everyone > feels like my rheumatologist can keep track of me every three months > so they'll read her report. Naturally, my rheumatologist is changing > after two years with a highly respected doc ! Don't know what/who > I'll be getting. Thankfully I still have my GI and physical med > docs who are doing an excellent job. > > bug > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 bug I am going through all the pulmo testing to make sure there isn't a problem other than mito. What I have had for many years is due to mito and I have just had to learn to live with it. I don't see my pulmo until Sept. but he keeps writing orders for tests. I will be getting a new CPAP and mask and will continue on O2 with the CPAP. My CPAP settings are being increased. laurie > > Reply-To: > Date: Thu, 10 Jun 2004 15:11:27 -0000 > To: > Subject: Re: Bug -pulmo appointment > > They've said it's a sub-cellular problem that's causing my breathing > difficulty and neuro needs to work on it. Neuro says there is > nothing more they can offer me since the cocktail didn't work and > cardiology has the same philosophy as pulmo. All of my testing has > come out fairly normal so that's their justification. Everyone > feels like my rheumatologist can keep track of me every three months > so they'll read her report. Naturally, my rheumatologist is changing > after two years with a highly respected doc ! Don't know what/who > I'll be getting. Thankfully I still have my GI and physical med > docs who are doing an excellent job. > > bug > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 I don't remember, have you had a sleep study? If not, I'm sure if your neuro recommended it and told why, I would think you should be able to get a sleep study done. Another idea is a case manager if you haven't already gone that route. Hugs, venomvw wrote: >They've said it's a sub-cellular problem that's causing my breathing >difficulty and neuro needs to work on it. Neuro says there is >nothing more they can offer me since the cocktail didn't work and >cardiology has the same philosophy as pulmo. All of my testing has >come out fairly normal so that's their justification. Everyone >feels like my rheumatologist can keep track of me every three months >so they'll read her report. Naturally, my rheumatologist is changing >after two years with a highly respected doc ! Don't know what/who >I'll be getting. Thankfully I still have my GI and physical med >docs who are doing an excellent job. > >bug > > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 Sub-cellular meaning mitochondria? Don't they know that support treatments and equipment make our lives livable? What about Mattie that has mito for MDA? Are they doing to say his vent doesn't help him? I'm sure he had something like a c-pap or bi-pap before he had to go to the vent. If they won't start with a sleep study, what about at least a pulse-ox study? That could be done at home. I am so very angry in your behalf!!! This is ridiculous. Hugs, venomvw wrote: >They've said it's a sub-cellular problem that's causing my breathing >difficulty and neuro needs to work on it. Neuro says there is >nothing more they can offer me since the cocktail didn't work and >cardiology has the same philosophy as pulmo. All of my testing has >come out fairly normal so that's their justification. Everyone >feels like my rheumatologist can keep track of me every three months >so they'll read her report. Naturally, my rheumatologist is changing >after two years with a highly respected doc ! Don't know what/who >I'll be getting. Thankfully I still have my GI and physical med >docs who are doing an excellent job. > >bug > > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 Hi . I have shortness of breath which can come on suddenly with or without exercise. I also get just plain tired, especially as the evening progresses. I've had all the tests to show I don't have sleep apnea or anything. They just call it Dyspnea. Bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 Thanks ! I appreciate your concern. I've had the sleep study which didn't show anything other than very poor sleeping patterns. I've had the exercise tests, breathing tests etc... not a darn thing comes up (nothing significant anyway). That is their justification. Oddly enough, at my request they supposedly ordered BiPap for me and stated the insurance denied it. When I called the insurance company they said all I needed was an RX for it to go right through ! I'm trying to straighten it out and maybe my GP could just order it for me...I'm not sure. bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 I sure hope you get the Rx!!! Did you get the name of the person that told you this at the insurance company? Let us know. I'll keep my fingers crossed for you. BTW, was this testing before or after the mito dx? If it was more than a year ago, things can change drastically, even though I wish that wasn't the case. I had NO cardiac problems but went for a yearly echo and after about 5 normal ones, the last one showed left ventricular diastolic dysfunction. If I had not gone for yearly echos despite no clinical symptoms I never would have known. Hang in there! venomvw wrote: >Thanks ! I appreciate your concern. I've had the sleep >study which didn't show anything other than very poor sleeping >patterns. I've had the exercise tests, breathing tests etc... not a >darn thing comes up (nothing significant anyway). That is their >justification. Oddly enough, at my request they supposedly ordered >BiPap for me and stated the insurance denied it. When I called the >insurance company they said all I needed was an RX for it to go >right through ! I'm trying to straighten it out and maybe my GP >could just order it for me...I'm not sure. > >bug > > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 bug Someone will also need to determine the settings for the bi-PAP. I hope that doesn't become a problem. I had to have another sleep study last week to determine the settings I should now have. I'll keep my fingers crossed for you. laurie > > Reply-To: > Date: Sat, 12 Jun 2004 23:26:16 -0000 > To: > Subject: Re: Bug -pulmo appointment > > Thanks ! I appreciate your concern. I've had the sleep > study which didn't show anything other than very poor sleeping > patterns. I've had the exercise tests, breathing tests etc... not a > darn thing comes up (nothing significant anyway). That is their > justification. Oddly enough, at my request they supposedly ordered > BiPap for me and stated the insurance denied it. When I called the > insurance company they said all I needed was an RX for it to go > right through ! I'm trying to straighten it out and maybe my GP > could just order it for me...I'm not sure. > > bug > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.