Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Momma Jo, Hope you don't mind the name. Just thought it fit for me at the moment. I to feel it's hard to tell someone to try some type of trmt. or drug knowing that it didn't work for me or the side effects where unreal. Hate to dash that persons hopes. But in the other hand ya never know is what I like to think. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Saw this as deleting emails and wanted to tell you that went for acupuncture within the first 8 months of being diagnosed with rsd. She tried many types of things to help but finally stopped the acupuncture as did not help but short time if at all. Of course does not mean won't help others greatly. I find it so hard to even respond sometimes to someone asking about a med or any treatment as always have to understand that what works for one does not work for other and kind of makes me feel like either getting someone up to try something or discouraging someone about even trying specific treatment. Am I alone on this? Perhaps just find it frustrating to find something that helps and know may do nothing for other person or persons. Oh well, take care all. Hope each has had good day. Hugs JoAnn s Momma Re: an Update Ginny, I happen to agree with your Dr. I also agree that "alternative medicine" is a wonderful idea. I am very tempted to try acupuncture again myself. A lot of people have had very positive results. My Drs. believe that my RSD is not as bad as it could/should be because of several things. The first is that I stopped smoking (seven years ago already!). The next is that I do try and stay as active as possible, including mentally. Everyone has their own limits, of course. The next is that I have tried to take supplements and eat well. I take a plethera of things, some of the things that have been suggested included cherry extract, coral calcium, coromega oils, etc. I usually suggest the website of my local health food store, as it's a wonderful site that gives a lot of suggestions for different ailments. RSD-CRPS is NOT specifically shown, but there are still numerous, including "chronic pain" conditions. That site is www.EarthlightNaturalFoods.com I received an email from Debbie/DJ the other day about alternative medicine and treatments, and would be happy to forward it (or ask her to if I've lost it) if you are interested. Hope this helps some.. JO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Saw this as deleting emails and wanted to tell you that went for acupuncture within the first 8 months of being diagnosed with rsd. She tried many types of things to help but finally stopped the acupuncture as did not help but short time if at all. Of course does not mean won't help others greatly. I find it so hard to even respond sometimes to someone asking about a med or any treatment as always have to understand that what works for one does not work for other and kind of makes me feel like either getting someone up to try something or discouraging someone about even trying specific treatment. Am I alone on this? Perhaps just find it frustrating to find something that helps and know may do nothing for other person or persons. Oh well, take care all. Hope each has had good day. Hugs JoAnn s Momma Re: an Update Ginny, I happen to agree with your Dr. I also agree that "alternative medicine" is a wonderful idea. I am very tempted to try acupuncture again myself. A lot of people have had very positive results. My Drs. believe that my RSD is not as bad as it could/should be because of several things. The first is that I stopped smoking (seven years ago already!). The next is that I do try and stay as active as possible, including mentally. Everyone has their own limits, of course. The next is that I have tried to take supplements and eat well. I take a plethera of things, some of the things that have been suggested included cherry extract, coral calcium, coromega oils, etc. I usually suggest the website of my local health food store, as it's a wonderful site that gives a lot of suggestions for different ailments. RSD-CRPS is NOT specifically shown, but there are still numerous, including "chronic pain" conditions. That site is www.EarthlightNaturalFoods.com I received an email from Debbie/DJ the other day about alternative medicine and treatments, and would be happy to forward it (or ask her to if I've lost it) if you are interested. Hope this helps some.. JO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Saw this as deleting emails and wanted to tell you that went for acupuncture within the first 8 months of being diagnosed with rsd. She tried many types of things to help but finally stopped the acupuncture as did not help but short time if at all. Of course does not mean won't help others greatly. I find it so hard to even respond sometimes to someone asking about a med or any treatment as always have to understand that what works for one does not work for other and kind of makes me feel like either getting someone up to try something or discouraging someone about even trying specific treatment. Am I alone on this? Perhaps just find it frustrating to find something that helps and know may do nothing for other person or persons. Oh well, take care all. Hope each has had good day. Hugs JoAnn s Momma Re: an Update Ginny, I happen to agree with your Dr. I also agree that "alternative medicine" is a wonderful idea. I am very tempted to try acupuncture again myself. A lot of people have had very positive results. My Drs. believe that my RSD is not as bad as it could/should be because of several things. The first is that I stopped smoking (seven years ago already!). The next is that I do try and stay as active as possible, including mentally. Everyone has their own limits, of course. The next is that I have tried to take supplements and eat well. I take a plethera of things, some of the things that have been suggested included cherry extract, coral calcium, coromega oils, etc. I usually suggest the website of my local health food store, as it's a wonderful site that gives a lot of suggestions for different ailments. RSD-CRPS is NOT specifically shown, but there are still numerous, including "chronic pain" conditions. That site is www.EarthlightNaturalFoods.com I received an email from Debbie/DJ the other day about alternative medicine and treatments, and would be happy to forward it (or ask her to if I've lost it) if you are interested. Hope this helps some.. JO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 JoAnn - You are comlpetely not alone in that. I've had some pretty out there experiences with the meds and treatments, so it is difficult. I just try to remember to limit myself to what the actual med may be or what the known side effects of them are, etc without putting too much personal info in. Heaven knows I hope ya'll have better luck with the meds and treatments that I have....no need to add to the complications Hugs, TriciaJoAnn & Russ Ford wrote: Saw this as deleting emails and wanted to tell you that went for acupuncture within the first 8 months of being diagnosed with rsd. She tried many types of things to help but finally stopped the acupuncture as did not help but short time if at all. Of course does not mean won't help others greatly. I find it so hard to even respond sometimes to someone asking about a med or any treatment as always have to understand that what works for one does not work for other and kind of makes me feel like either getting someone up to try something or discouraging someone about even trying specific treatment. Am I alone on this? Perhaps just find it frustrating to find something that helps and know may do nothing for other person or persons. Oh well, take care all. Hope each has had good day. Hugs JoAnn s Momma Re: an Update Ginny, I happen to agree with your Dr. I also agree that "alternative medicine" is a wonderful idea. I am very tempted to try acupuncture again myself. A lot of people have had very positive results. My Drs. believe that my RSD is not as bad as it could/should be because of several things. The first is that I stopped smoking (seven years ago already!). The next is that I do try and stay as active as possible, including mentally. Everyone has their own limits, of course. The next is that I have tried to take supplements and eat well. I take a plethera of things, some of the things that have been suggested included cherry extract, coral calcium, coromega oils, etc. I usually suggest the website of my local health food store, as it's a wonderful site that gives a lot of suggestions for different ailments. RSD-CRPS is NOT specifically shown, but there are still numerous, including "chronic pain" conditions. That site is www.EarthlightNaturalFoods.com I received an email from Debbie/DJ the other day about alternative medicine and treatments, and would be happy to forward it (or ask her to if I've lost it) if you are interested. Hope this helps some.. JO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2005 Report Share Posted April 2, 2005 Good luck. Home hemo is an attractive option when it's available. It allows more dietary freedom, and it's easier on the heart... and if it's long nocturnal hemo, virtually complete freedom from any diet or fluid restrictions (a very big deal!). There is nothing else that can touch it in that regard except a transplant, but we can't all get one of those right away. It's important to look at all the options though. I wonder if PD will be available to you, given the previous abdominal surgery? You seem to have a positive attitude about it, and that probably is the single most important advantage to have going in. Keep in touch. Pierre Re: An Update > > > > > > Hi everyone. I am the diabetic who had the pancreas transplant five years > > ago, but it unfortunately didn't stop my progression to kidney failure. > You > > have all been very kind in allowing me to lurk on your list and to answer > > any questions I have posted. So I thought it only fair to give you an > > update on my first nephro appt. today. > > > > He said that my GFR was 15. You all know what that means. I am to see > him > > again in six weeks. He said at that time we will discuss transplant and > > dialysis options. In the meantime, I am to start getting the necessary > > tests to be cleared to be placed on the transplant list. > > > > I just want to say that because of this list, I was able to have a very > > informative dialog with him. I knew what questions to ask. (And what the > > answers meant, smile). It was a very satisfying appointment. > > > > In some ways I feel relieved, because having so many questions running > > through my mind has been almost worse than hearing the answers. > > > > Well so I guess the next phase of my life begins. It ain't over till it's > > over, smile. > > Thank you. > > Debbie > > > > > > > > > > To edit your settings for the group, go to our Yahoo Group > > home page: > > http://groups.yahoo.com/group/iga-nephropathy/ > > > > To unsubcribe via email, > > iga-nephropathy-unsubscribe > > Visit our companion website at www.igan.ca. The site is entirely supported > by donations. If you would like to help, go to: > > http://www.igan.ca/id62.htm > > > > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2005 Report Share Posted April 2, 2005 Hi . Thank you. And I want to say how amazed I have been reading your posts about how well you manage at 18%. No surrender, no retreat, right, smile? I am not sure if my transplant meds will change or not. I had my pancreas transplant at the University of Minnesota. They call themselves FUMC now. (Fairview University Medicical Centeer). My immunosuppresants are rapamune and cellcept. I will more than likely be having my kidney transplant at Florida Hospital Medical Center in Orlando. I don't know what their immunosuppressant regime includes. Debbie Re: An Update Hi Debbie, I am just so sorry your progressed down to the point where you will need a transplant or dialysis. I am only slightly behind you at 18% so I have a pretty good idea of how you feel. Just know you will have so much support as you transition to this next phase. I am curious, since you have already had a transplant, will your post Kidney transplant meds change at all? In a message dated 4/1/2005 12:17:50 P.M. Pacific Standard Time, debbie@... writes: Hi everyone. I am the diabetic who had the pancreas transplant five years ago, but it unfortunately didn't stop my progression to kidney failure. You have all been very kind in allowing me to lurk on your list and to answer any questions I have posted. So I thought it only fair to give you an update on my first nephro appt. today. He said that my GFR was 15. You all know what that means. I am to see him again in six weeks. He said at that time we will discuss transplant and dialysis options. In the meantime, I am to start getting the necessary tests to be cleared to be placed on the transplant list. I just want to say that because of this list, I was able to have a very informative dialog with him. I knew what questions to ask. (And what the answers meant, smile). It was a very satisfying appointment. In some ways I feel relieved, because having so many questions running through my mind has been almost worse than hearing the answers. Well so I guess the next phase of my life begins. It ain't over till it's over, smile. Thank you. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2005 Report Share Posted April 2, 2005 Pierre, that is my biggest concern that home hemo won't be available to me. I have looked at the home dialysis website and it seems to be offered only in ville and Miami which are both far from Orlando. My husband is willing to take family medical leave in order for us to go to the six weeks of training if that would be an option for us. I am indeed concerned that PD won't be an option for me. I don't know if I mentioned but this is actually my second pancreas transplant. The first one got infected and had to be removed. I got the second one a year later. So I have had a number of abdominal surgeries and have a lot of scar tissue and a hernia to make matters even worse! I really hope I can find a way to do some sort of home hemo though. I am somewhat of a loner and a private person and I really don't want to go to a center. On top of that I am legally blind and so it isn't as if I could kill time reading or watching TV. At home I have a large screen monitor and a big screen TV and could at least keep myself somewhat entertained! Debbie Re: An Update > > > > > > Hi everyone. I am the diabetic who had the pancreas transplant five years > > ago, but it unfortunately didn't stop my progression to kidney failure. > You > > have all been very kind in allowing me to lurk on your list and to answer > > any questions I have posted. So I thought it only fair to give you an > > update on my first nephro appt. today. > > > > He said that my GFR was 15. You all know what that means. I am to see > him > > again in six weeks. He said at that time we will discuss transplant and > > dialysis options. In the meantime, I am to start getting the necessary > > tests to be cleared to be placed on the transplant list. > > > > I just want to say that because of this list, I was able to have a very > > informative dialog with him. I knew what questions to ask. (And what the > > answers meant, smile). It was a very satisfying appointment. > > > > In some ways I feel relieved, because having so many questions running > > through my mind has been almost worse than hearing the answers. > > > > Well so I guess the next phase of my life begins. It ain't over till it's > > over, smile. > > Thank you. > > Debbie > > > > > > > > > > To edit your settings for the group, go to our Yahoo Group > > home page: > > http://groups.yahoo.com/group/iga-nephropathy/ > > > > To unsubcribe via email, > > iga-nephropathy-unsubscribe > > Visit our companion website at www.igan.ca. The site is entirely supported > by donations. If you would like to help, go to: > > http://www.igan.ca/id62.htm > > > > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2005 Report Share Posted April 2, 2005 Hi Debbie, I do agree, no surrender, no retreat! Even at 18%, I refuse to let IgAN dictate my life to me. The only concession I have been forced to make over the last month is giving up my running. That was very hard to give up because I have run 3-4 miles usually four days a week for more than a decade, but my body just cannot take it anymore. But, I am determined to pick it back up as soon as my transplant is behind me. Keep us informed on how your transplant evaluation is progressing! Re: An Update Hi . Thank you. And I want to say how amazed I have been reading your posts about how well you manage at 18%. No surrender, no retreat, right, smile? I am not sure if my transplant meds will change or not. I had my pancreas transplant at the University of Minnesota. They call themselves FUMC now. (Fairview University Medicical Centeer). My immunosuppresants are rapamune and cellcept. I will more than likely be having my kidney transplant at Florida Hospital Medical Center in Orlando. I don't know what their immunosuppressant regime includes. Debbie Re: An Update Hi Debbie, I am just so sorry your progressed down to the point where you will need a transplant or dialysis. I am only slightly behind you at 18% so I have a pretty good idea of how you feel. Just know you will have so much support as you transition to this next phase. I am curious, since you have already had a transplant, will your post Kidney transplant meds change at all? In a message dated 4/1/2005 12:17:50 P.M. Pacific Standard Time, debbie@... writes: Hi everyone. I am the diabetic who had the pancreas transplant five years ago, but it unfortunately didn't stop my progression to kidney failure. You have all been very kind in allowing me to lurk on your list and to answer any questions I have posted. So I thought it only fair to give you an update on my first nephro appt. today. He said that my GFR was 15. You all know what that means. I am to see him again in six weeks. He said at that time we will discuss transplant and dialysis options. In the meantime, I am to start getting the necessary tests to be cleared to be placed on the transplant list. I just want to say that because of this list, I was able to have a very informative dialog with him. I knew what questions to ask. (And what the answers meant, smile). It was a very satisfying appointment. In some ways I feel relieved, because having so many questions running through my mind has been almost worse than hearing the answers. Well so I guess the next phase of my life begins. It ain't over till it's over, smile. Thank you. Debbie Quote Link to comment Share on other sites More sharing options...
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