Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 yes doing great, my blood pressure is very very low, lol, so we are holding the second dose. Good Idea, had planned on doing that anyway. Going to take my dizzy body to bed. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 yes doing great, my blood pressure is very very low, lol, so we are holding the second dose. Good Idea, had planned on doing that anyway. Going to take my dizzy body to bed. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 yes doing great, my blood pressure is very very low, lol, so we are holding the second dose. Good Idea, had planned on doing that anyway. Going to take my dizzy body to bed. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 Hello Ginny, Now I'll turn to my serious side and say I am pulling for you and want for you the very best. I understand that need to go quietly within to wrestle with bad news. I am glad you are now ready to move through this with the help of support from family and friends. There is a limitless supply of love and compassion waiting for you. With love and caring, Lyn Ginny Barrientos <hisloss123@y...> wrote: > > hi all... > > Last e-mail I sent just told you I was having a rough time and not exactly what was going on...I guess I had to absorb it all in and deal quietly with it a couple of days before telling everyone what exactly was going on. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 Hello Ginny, Now I'll turn to my serious side and say I am pulling for you and want for you the very best. I understand that need to go quietly within to wrestle with bad news. I am glad you are now ready to move through this with the help of support from family and friends. There is a limitless supply of love and compassion waiting for you. With love and caring, Lyn Ginny Barrientos <hisloss123@y...> wrote: > > hi all... > > Last e-mail I sent just told you I was having a rough time and not exactly what was going on...I guess I had to absorb it all in and deal quietly with it a couple of days before telling everyone what exactly was going on. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 Hello Ginny, Now I'll turn to my serious side and say I am pulling for you and want for you the very best. I understand that need to go quietly within to wrestle with bad news. I am glad you are now ready to move through this with the help of support from family and friends. There is a limitless supply of love and compassion waiting for you. With love and caring, Lyn Ginny Barrientos <hisloss123@y...> wrote: > > hi all... > > Last e-mail I sent just told you I was having a rough time and not exactly what was going on...I guess I had to absorb it all in and deal quietly with it a couple of days before telling everyone what exactly was going on. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 Thank you all for your concern, e-mails, thoughts and prayers. I know lots has gone on with a few of you since I haven't been posting and sorry I couldn't respond to all the posts..I just didn't think I would be very positive or supportive like I could have been if I hadn't been going through all of this and it wouldn't have been fair to you. Now that I have absorbed the news I am back to my usual self...and will try to catch up with everyone over the next couple of days...I have saved the posts I really want to respond to them. Thanks again for all the support it really helped me get back on my feet so quickly. Hoping you all better days...Hugs..Ginny Ginny, I can understand you wanting to take a few days to sort all this out. I am glad that you are finally able to tell us what has us what has been going on. But Ginny it is okay every once and awhile to come in and say that you are not going don't worry about responding to anything just get better. I will keep you in my prayers LIn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 > Donna and I will make a trip out to see you before the snow hits here. Ginny This trip BEFORE the snow flies..are you planning this trip like this week Hugs Donna > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 > Donna and I will make a trip out to see you before the snow hits here. Ginny This trip BEFORE the snow flies..are you planning this trip like this week Hugs Donna > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 > Donna and I will make a trip out to see you before the snow hits here. Ginny This trip BEFORE the snow flies..are you planning this trip like this week Hugs Donna > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 Donna...lol...it is not going to snow here at all this winter...lmao ok...well not until the end of November...which gives us this week and next to get a move on...it's only a day trip...Love ya..Hugs..GinnyDonna wrote: > Donna and I will make a trip out to see you before the snow hits here. GinnyThis trip BEFORE the snow flies..are you planning this trip like this week ;)HugsDonna> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 Donna...lol...it is not going to snow here at all this winter...lmao ok...well not until the end of November...which gives us this week and next to get a move on...it's only a day trip...Love ya..Hugs..GinnyDonna wrote: > Donna and I will make a trip out to see you before the snow hits here. GinnyThis trip BEFORE the snow flies..are you planning this trip like this week ;)HugsDonna> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 Donna...lol...it is not going to snow here at all this winter...lmao ok...well not until the end of November...which gives us this week and next to get a move on...it's only a day trip...Love ya..Hugs..GinnyDonna wrote: > Donna and I will make a trip out to see you before the snow hits here. GinnyThis trip BEFORE the snow flies..are you planning this trip like this week ;)HugsDonna> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Thank you for your prayers Tammy! In a message dated 4/7/2005 7:34:40 PM Eastern Daylight Time, " tav110 " writes: > > > >Thanks , for sharing. I had to look back at the notes taken >from the neph. I had asumed that Blake had 100% kidney function, >But the neph didn't say that excately. He said Blake's kidney > function was good. Right now we are taking everything one day at a >time. After reading posting on this site, I have learned that I'm >not alone in that theory. Being a part of this group has help me >learn and understand more of what's happening and what to expect. I >keep a pen and paper near, to write questions as it goes for the >next neph visit. Thanks again for the upbeat news . You will be >in my prayers. Tammy > >> I was first symptomatic in my early teens too and 30 years later >am >> just recently getting closer to needing dialysis or a >transplant. >> Statistically only 30-50% reach end stage. That means 50-70% of >those >> with IgAN have a fairly benign form of IgAN that just needs to be >> monitored. Ace Inhibitors are renal protective and keeping BP low >is >> really iimportant to help protect Blake's kidney function. >> >> If his function is at 100% at diagnosis, there is a strong >probability >> he does not have rapidly progressive IgAN. >> >> >> >> Update >> >> >> >> I want to say thank you for being here as a support group and to >all >> who answered me. I have enjoyed reading the messages here, and >> found them educating on the IgaN. My son, Blake was diagnosed with >> this in March of this year, just a few days before his 15th >> birthday. . Our first doctor visit with a nephrologist was I a >> parent's nightmare. The nephrologists started talking about >> dialysis. We have decided to obtain a second opinion from a >> nephrologist in Houston, about 2 hours from out home. It gave us >> some upbeat news that not all cases progress to the stage of >needing >> dialysis or transplant. As of now Blake's kidney are still at full >> function. I'm excited about that. He has placed Blake on an ACE >> inhibitor. I'm going to have to get use to all this >> terminology. I've read all the information I could on this IgAN >> (also on your sister site). Although there is a lot to absorb, I >> still am a little bet confused. I gather in time I will learn more >> as this goes on. I'm gathering that there is no way to tell if >this >> will be aggressive type or not. Is there is any information other >> than your sister site that I should as a parent be aware of? Again >> thanks to all of you, you guys will always be remembered in our >> prayers. >> >> >> >> >> >> >> >> >> 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 7, 2005 Report Share Posted April 7, 2005 Thank you for your prayers Tammy! In a message dated 4/7/2005 7:34:40 PM Eastern Daylight Time, " tav110 " writes: > > > >Thanks , for sharing. I had to look back at the notes taken >from the neph. I had asumed that Blake had 100% kidney function, >But the neph didn't say that excately. He said Blake's kidney > function was good. Right now we are taking everything one day at a >time. After reading posting on this site, I have learned that I'm >not alone in that theory. Being a part of this group has help me >learn and understand more of what's happening and what to expect. I >keep a pen and paper near, to write questions as it goes for the >next neph visit. Thanks again for the upbeat news . You will be >in my prayers. Tammy > >> I was first symptomatic in my early teens too and 30 years later >am >> just recently getting closer to needing dialysis or a >transplant. >> Statistically only 30-50% reach end stage. That means 50-70% of >those >> with IgAN have a fairly benign form of IgAN that just needs to be >> monitored. Ace Inhibitors are renal protective and keeping BP low >is >> really iimportant to help protect Blake's kidney function. >> >> If his function is at 100% at diagnosis, there is a strong >probability >> he does not have rapidly progressive IgAN. >> >> >> >> Update >> >> >> >> I want to say thank you for being here as a support group and to >all >> who answered me. I have enjoyed reading the messages here, and >> found them educating on the IgaN. My son, Blake was diagnosed with >> this in March of this year, just a few days before his 15th >> birthday. . Our first doctor visit with a nephrologist was I a >> parent's nightmare. The nephrologists started talking about >> dialysis. We have decided to obtain a second opinion from a >> nephrologist in Houston, about 2 hours from out home. It gave us >> some upbeat news that not all cases progress to the stage of >needing >> dialysis or transplant. As of now Blake's kidney are still at full >> function. I'm excited about that. He has placed Blake on an ACE >> inhibitor. I'm going to have to get use to all this >> terminology. I've read all the information I could on this IgAN >> (also on your sister site). Although there is a lot to absorb, I >> still am a little bet confused. I gather in time I will learn more >> as this goes on. I'm gathering that there is no way to tell if >this >> will be aggressive type or not. Is there is any information other >> than your sister site that I should as a parent be aware of? Again >> thanks to all of you, you guys will always be remembered in our >> prayers. >> >> >> >> >> >> >> >> >> 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 7, 2005 Report Share Posted April 7, 2005 Thank you for your prayers Tammy! In a message dated 4/7/2005 7:34:40 PM Eastern Daylight Time, " tav110 " writes: > > > >Thanks , for sharing. I had to look back at the notes taken >from the neph. I had asumed that Blake had 100% kidney function, >But the neph didn't say that excately. He said Blake's kidney > function was good. Right now we are taking everything one day at a >time. After reading posting on this site, I have learned that I'm >not alone in that theory. Being a part of this group has help me >learn and understand more of what's happening and what to expect. I >keep a pen and paper near, to write questions as it goes for the >next neph visit. Thanks again for the upbeat news . You will be >in my prayers. Tammy > >> I was first symptomatic in my early teens too and 30 years later >am >> just recently getting closer to needing dialysis or a >transplant. >> Statistically only 30-50% reach end stage. That means 50-70% of >those >> with IgAN have a fairly benign form of IgAN that just needs to be >> monitored. Ace Inhibitors are renal protective and keeping BP low >is >> really iimportant to help protect Blake's kidney function. >> >> If his function is at 100% at diagnosis, there is a strong >probability >> he does not have rapidly progressive IgAN. >> >> >> >> Update >> >> >> >> I want to say thank you for being here as a support group and to >all >> who answered me. I have enjoyed reading the messages here, and >> found them educating on the IgaN. My son, Blake was diagnosed with >> this in March of this year, just a few days before his 15th >> birthday. . Our first doctor visit with a nephrologist was I a >> parent's nightmare. The nephrologists started talking about >> dialysis. We have decided to obtain a second opinion from a >> nephrologist in Houston, about 2 hours from out home. It gave us >> some upbeat news that not all cases progress to the stage of >needing >> dialysis or transplant. As of now Blake's kidney are still at full >> function. I'm excited about that. He has placed Blake on an ACE >> inhibitor. I'm going to have to get use to all this >> terminology. I've read all the information I could on this IgAN >> (also on your sister site). Although there is a lot to absorb, I >> still am a little bet confused. I gather in time I will learn more >> as this goes on. I'm gathering that there is no way to tell if >this >> will be aggressive type or not. Is there is any information other >> than your sister site that I should as a parent be aware of? Again >> thanks to all of you, you guys will always be remembered in our >> prayers. >> >> >> >> >> >> >> >> >> 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 14, 2005 Report Share Posted April 14, 2005 Sandy - There isn't much they can do for the Spina Bifida defect...basically it has affected me all of my life...but it was not known that it was the cause of my " clumsiness " until they x-rayed my back. My doctor says the only thing it has an impact on is the lack of feeling in my legs...but everything else is definitely a PLS related symptom. Thanks for asking. > Hi , > Thanks for the update, you mentioned spina bifida, is there something they can help you with this? > Support is what we do best here, have a great day, Sandy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 Hi , Well, I'm a little confused myself, my labs say I'm at 13% so they put me on a transplant waiting list. However, if you ask my neph, it's more like 24%, I guess due to giving consideration to my weight as well. I guess that explains somewhat why I don't have these symptoms of approaching ESRD, except for a bit of swelling and the fatigue (which I sometimes still think it's the sleep deprivation from the prednisone). " Drinking from a fire hydrant " ...yes, that is exactly how I would describe it too, ha ha ha! It was a lot of stuff, honestly I felt like I should go home and sleep on it after one of these half-day sessions. But instead I went to work, because it's so busy there. This EPO does sound amazing. I hope I can wait the three months - it takes that long before you are covered. Sophia > > Hi Sophia, > > I did not realize you had bypassed me and had lower function than I do. > Last I checked (a couple months ago) I was still at 18%. I am due for some lab > work soon and I am hoping I am still stable at 18%. > > I understand the fear associated with the transplant evaluation. It was like > drinking from a fire hydrant the first time I went. I felt very overwhelmed > by all the statistics, and the side effects of all the meds sounded scary to > me too. > > On the Epo, I can tell you that it truly is a drug that gave me my life > back! I think it is a miracle drug. The difference in energy and how tired I > was dramatically improved. The needles they use are very small, and I even > have been giving myself the injections the past couple of years with no problem. > It was only hard the very first time I gave myself the injection. I do hope > you can get the extended insurance to cover it. > > Keep us informed on how Kris' work-up is going. > > > > > > In a message dated 4/19/2005 4:45:03 P.M. Pacific Daylight Time, > yipee_ladybug@y... writes: > > > > Hi everyone, > > I've not been around much, it's been very busy here as I am trying > to wrap up my term as dance club prez and also dealing with lots and > lots of doctors appts for transplant evaluation, donor evaluation > (for Kris), and pre-care dialysis stuff. > > I found that these various seminars on transplant, donor and pre- > care very interesting - and also very scary. Honestly, it made me > (and still does make me) sad that I have reached this stage. I have > raged and cried and been depressed, but am slowly getting over it > and accepting my condition. > > The meeting with pre-care turned out to be the most interesting. My > dietician told me a lot about what my labs said - now I am on a low > sodium-potassium-phosphorus diet, because I was borderline high in > all those items and of course it's kinda dangerous. > > On a surprisingly positive note, the nurse and dietician told me > they had never seen a renal patient with such low cholesterol > numbers and in all other aspects, I am apparently in good health. > > My hemoglobin is rather low though (only about 100), so I am waiting > for the neph to advise me if I need epo shots. Two things I don't > like about this: it's injection only and I hate needles; and it > also expensive. My work benefit plan does cover some of it, but > it's still hundreds of dollars a month I would need to pay. So we > are currently going to apply for additional extended health coverage > to coverage that portion also. We'll see what happens. > > Otherwise, I seem all right for now, stable at 13% function. Not > too many physical problems, thank goodness, maybe just a little more > tired than usual due to low hemoglobin. > > Anyways, I've been keeping up with the posts and thinking about all > of you. Hope you have a good week! > > Sophia > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 Thank you Cy, Yes, this month has been an especially difficult time for me, it has been wearing me down with these medical appointments, adjusting to a new diet, dealing with executive/administrative work and wrap-up. Actually, only two people (both good friends) on the dance club executive know about my medical condition. Everyone did see my prednisone look, but most don't know what's going on, or think it was because I was married recently or something. The reality is that I tell very few pple about my condition because I still apparently look and act healthier than most pple and with the exception of a few close friends that I look to for support and trust, I guess I am really a private person after all. I try not to think about my own condition, or get obssessed with it. I like to think there is a lot more about life out there, happier things - and I know there are. I am just thankful for what I do have. I am especially thankful for this support group and for my husband. You are all really amazing. The extended health coverage is from Alberta Blue Cross, I don't really know much about it. Somehow the provincial government (who has responsibility to administer the universal health care system we have in Canada) is involved in it. There is a waiting period of 3 months after you apply before you can qualify for coverage. Apparently though, once you get the coverage, it will cover the part that my work health benefits don't (currently my work only covers 80% - I've been told that I would still have to pay $200 as a result without this coverage). So we should apply soon, I guess. Right now, I do notice I get tired a little more easily...then again, I am out four nights a week dancing, and still like to do the social things with my friends on the weekends. Oh yeah, and I still have to do my dance club thing. ; ) So, I hope that by wrapping up my term on the dance club executive, I will have more time for rest - and can wait for some time until my EPO shots are paid. Sophia > Sophia, > > It's good to hear from you. I was beginning to get a little worried. > Thanks for checking in. You must be one awfully strong woman to be dealing > with dance club stuff on top of everything else. I'm also very impressed > that you're not stuffing your feelings about all this (as I would do) - and > I think you'll be a lot healthier for it in the long run. It's scarry stuff > to be looking over the edge of this kind of cliff... Hopefully all the > positive experiences here will stand you in good stead. We'll all be > rooting for you in the weeks and months ahead. > > A close relative did EPO for non-renal reasons - and if his experience is > any measure, it is really the wonder drug that everyone says it is. How > long is it going to take to hear back on the extended health coverage? Can > you explain a bit more about it? I hate to think of you suffering from any > more fatigue than you have to. > > Big hugs, > > Cy > > update > > > > > > > > Hi everyone, > > > > I've not been around much, it's been very busy here as I am trying > > to wrap up my term as dance club prez and also dealing with lots and > > lots of doctors appts for transplant evaluation, donor evaluation > > (for Kris), and pre-care dialysis stuff. > > > > I found that these various seminars on transplant, donor and pre- > > care very interesting - and also very scary. Honestly, it made me > > (and still does make me) sad that I have reached this stage. I have > > raged and cried and been depressed, but am slowly getting over it > > and accepting my condition. > > > > The meeting with pre-care turned out to be the most interesting. My > > dietician told me a lot about what my labs said - now I am on a low > > sodium-potassium-phosphorus diet, because I was borderline high in > > all those items and of course it's kinda dangerous. > > > > On a surprisingly positive note, the nurse and dietician told me > > they had never seen a renal patient with such low cholesterol > > numbers and in all other aspects, I am apparently in good health. > > > > My hemoglobin is rather low though (only about 100), so I am waiting > > for the neph to advise me if I need epo shots. Two things I don't > > like about this: it's injection only and I hate needles; and it > > also expensive. My work benefit plan does cover some of it, but > > it's still hundreds of dollars a month I would need to pay. So we > > are currently going to apply for additional extended health coverage > > to coverage that portion also. We'll see what happens. > > > > Otherwise, I seem all right for now, stable at 13% function. Not > > too many physical problems, thank goodness, maybe just a little more > > tired than usual due to low hemoglobin. > > > > Anyways, I've been keeping up with the posts and thinking about all > > of you. Hope you have a good week! > > > > Sophia > > > > > > > > > > > > > > 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 24, 2005 Report Share Posted April 24, 2005 Hi Sophia, I am so sorry this has been such a difficult month for you. I know that for me, even KNOWING I was going to reach the point where I would need dialysis or a transplant, actually hearing I needed to be referred to the renal care clinic and make my preparations still required an adjustment. My pastor told me, " but ,you have KNOWN this was coming " to which I replied yes, but there was still the small measure of hope that I would beat it and besides actually hearing it forces you to deal with it. So much for my rose colored glasses I love to wear :-) On the Epo, I encourage you to apply for the coverage as soon as you can. I think Epo is a miracle drug that really gave me my life back and freed me from the paralyzing extreme fatigue. I must say that your schedule is amazing to me. I am not able to do more that one or two evenings a week after work. All I can say is you go girl! Re: update Thank you Cy, Yes, this month has been an especially difficult time for me, it has been wearing me down with these medical appointments, adjusting to a new diet, dealing with executive/administrative work and wrap-up. Actually, only two people (both good friends) on the dance club executive know about my medical condition. Everyone did see my prednisone look, but most don't know what's going on, or think it was because I was married recently or something. The reality is that I tell very few pple about my condition because I still apparently look and act healthier than most pple and with the exception of a few close friends that I look to for support and trust, I guess I am really a private person after all. I try not to think about my own condition, or get obssessed with it. I like to think there is a lot more about life out there, happier things - and I know there are. I am just thankful for what I do have. I am especially thankful for this support group and for my husband. You are all really amazing. The extended health coverage is from Alberta Blue Cross, I don't really know much about it. Somehow the provincial government (who has responsibility to administer the universal health care system we have in Canada) is involved in it. There is a waiting period of 3 months after you apply before you can qualify for coverage. Apparently though, once you get the coverage, it will cover the part that my work health benefits don't (currently my work only covers 80% - I've been told that I would still have to pay $200 as a result without this coverage). So we should apply soon, I guess. Right now, I do notice I get tired a little more easily...then again, I am out four nights a week dancing, and still like to do the social things with my friends on the weekends. Oh yeah, and I still have to do my dance club thing. ; ) So, I hope that by wrapping up my term on the dance club executive, I will have more time for rest - and can wait for some time until my EPO shots are paid. Sophia > Sophia, > > It's good to hear from you. I was beginning to get a little worried. > Thanks for checking in. You must be one awfully strong woman to be dealing > with dance club stuff on top of everything else. I'm also very impressed > that you're not stuffing your feelings about all this (as I would do) - and > I think you'll be a lot healthier for it in the long run. It's scarry stuff > to be looking over the edge of this kind of cliff... Hopefully all the > positive experiences here will stand you in good stead. We'll all be > rooting for you in the weeks and months ahead. > > A close relative did EPO for non-renal reasons - and if his experience is > any measure, it is really the wonder drug that everyone says it is. How > long is it going to take to hear back on the extended health coverage? Can > you explain a bit more about it? I hate to think of you suffering from any > more fatigue than you have to. > > Big hugs, > > Cy > > update > > > > > > > > Hi everyone, > > > > I've not been around much, it's been very busy here as I am trying > > to wrap up my term as dance club prez and also dealing with lots and > > lots of doctors appts for transplant evaluation, donor evaluation > > (for Kris), and pre-care dialysis stuff. > > > > I found that these various seminars on transplant, donor and pre- > > care very interesting - and also very scary. Honestly, it made me > > (and still does make me) sad that I have reached this stage. I have > > raged and cried and been depressed, but am slowly getting over it > > and accepting my condition. > > > > The meeting with pre-care turned out to be the most interesting. My > > dietician told me a lot about what my labs said - now I am on a low > > sodium-potassium-phosphorus diet, because I was borderline high in > > all those items and of course it's kinda dangerous. > > > > On a surprisingly positive note, the nurse and dietician told me > > they had never seen a renal patient with such low cholesterol > > numbers and in all other aspects, I am apparently in good health. > > > > My hemoglobin is rather low though (only about 100), so I am waiting > > for the neph to advise me if I need epo shots. Two things I don't > > like about this: it's injection only and I hate needles; and it > > also expensive. My work benefit plan does cover some of it, but > > it's still hundreds of dollars a month I would need to pay. So we > > are currently going to apply for additional extended health coverage > > to coverage that portion also. We'll see what happens. > > > > Otherwise, I seem all right for now, stable at 13% function. Not > > too many physical problems, thank goodness, maybe just a little more > > tired than usual due to low hemoglobin. > > > > Anyways, I've been keeping up with the posts and thinking about all > > of you. Hope you have a good week! > > > > Sophia > > > > > > > > > > > > > > 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 24, 2005 Report Share Posted April 24, 2005 Hi Sophia, I am so sorry this has been such a difficult month for you. I know that for me, even KNOWING I was going to reach the point where I would need dialysis or a transplant, actually hearing I needed to be referred to the renal care clinic and make my preparations still required an adjustment. My pastor told me, " but ,you have KNOWN this was coming " to which I replied yes, but there was still the small measure of hope that I would beat it and besides actually hearing it forces you to deal with it. So much for my rose colored glasses I love to wear :-) On the Epo, I encourage you to apply for the coverage as soon as you can. I think Epo is a miracle drug that really gave me my life back and freed me from the paralyzing extreme fatigue. I must say that your schedule is amazing to me. I am not able to do more that one or two evenings a week after work. All I can say is you go girl! Re: update Thank you Cy, Yes, this month has been an especially difficult time for me, it has been wearing me down with these medical appointments, adjusting to a new diet, dealing with executive/administrative work and wrap-up. Actually, only two people (both good friends) on the dance club executive know about my medical condition. Everyone did see my prednisone look, but most don't know what's going on, or think it was because I was married recently or something. The reality is that I tell very few pple about my condition because I still apparently look and act healthier than most pple and with the exception of a few close friends that I look to for support and trust, I guess I am really a private person after all. I try not to think about my own condition, or get obssessed with it. I like to think there is a lot more about life out there, happier things - and I know there are. I am just thankful for what I do have. I am especially thankful for this support group and for my husband. You are all really amazing. The extended health coverage is from Alberta Blue Cross, I don't really know much about it. Somehow the provincial government (who has responsibility to administer the universal health care system we have in Canada) is involved in it. There is a waiting period of 3 months after you apply before you can qualify for coverage. Apparently though, once you get the coverage, it will cover the part that my work health benefits don't (currently my work only covers 80% - I've been told that I would still have to pay $200 as a result without this coverage). So we should apply soon, I guess. Right now, I do notice I get tired a little more easily...then again, I am out four nights a week dancing, and still like to do the social things with my friends on the weekends. Oh yeah, and I still have to do my dance club thing. ; ) So, I hope that by wrapping up my term on the dance club executive, I will have more time for rest - and can wait for some time until my EPO shots are paid. Sophia > Sophia, > > It's good to hear from you. I was beginning to get a little worried. > Thanks for checking in. You must be one awfully strong woman to be dealing > with dance club stuff on top of everything else. I'm also very impressed > that you're not stuffing your feelings about all this (as I would do) - and > I think you'll be a lot healthier for it in the long run. It's scarry stuff > to be looking over the edge of this kind of cliff... Hopefully all the > positive experiences here will stand you in good stead. We'll all be > rooting for you in the weeks and months ahead. > > A close relative did EPO for non-renal reasons - and if his experience is > any measure, it is really the wonder drug that everyone says it is. How > long is it going to take to hear back on the extended health coverage? Can > you explain a bit more about it? I hate to think of you suffering from any > more fatigue than you have to. > > Big hugs, > > Cy > > update > > > > > > > > Hi everyone, > > > > I've not been around much, it's been very busy here as I am trying > > to wrap up my term as dance club prez and also dealing with lots and > > lots of doctors appts for transplant evaluation, donor evaluation > > (for Kris), and pre-care dialysis stuff. > > > > I found that these various seminars on transplant, donor and pre- > > care very interesting - and also very scary. Honestly, it made me > > (and still does make me) sad that I have reached this stage. I have > > raged and cried and been depressed, but am slowly getting over it > > and accepting my condition. > > > > The meeting with pre-care turned out to be the most interesting. My > > dietician told me a lot about what my labs said - now I am on a low > > sodium-potassium-phosphorus diet, because I was borderline high in > > all those items and of course it's kinda dangerous. > > > > On a surprisingly positive note, the nurse and dietician told me > > they had never seen a renal patient with such low cholesterol > > numbers and in all other aspects, I am apparently in good health. > > > > My hemoglobin is rather low though (only about 100), so I am waiting > > for the neph to advise me if I need epo shots. Two things I don't > > like about this: it's injection only and I hate needles; and it > > also expensive. My work benefit plan does cover some of it, but > > it's still hundreds of dollars a month I would need to pay. So we > > are currently going to apply for additional extended health coverage > > to coverage that portion also. We'll see what happens. > > > > Otherwise, I seem all right for now, stable at 13% function. Not > > too many physical problems, thank goodness, maybe just a little more > > tired than usual due to low hemoglobin. > > > > Anyways, I've been keeping up with the posts and thinking about all > > of you. Hope you have a good week! > > > > Sophia > > > > > > > > > > > > > > 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 24, 2005 Report Share Posted April 24, 2005 Hi Sophia, I am so sorry this has been such a difficult month for you. I know that for me, even KNOWING I was going to reach the point where I would need dialysis or a transplant, actually hearing I needed to be referred to the renal care clinic and make my preparations still required an adjustment. My pastor told me, " but ,you have KNOWN this was coming " to which I replied yes, but there was still the small measure of hope that I would beat it and besides actually hearing it forces you to deal with it. So much for my rose colored glasses I love to wear :-) On the Epo, I encourage you to apply for the coverage as soon as you can. I think Epo is a miracle drug that really gave me my life back and freed me from the paralyzing extreme fatigue. I must say that your schedule is amazing to me. I am not able to do more that one or two evenings a week after work. All I can say is you go girl! Re: update Thank you Cy, Yes, this month has been an especially difficult time for me, it has been wearing me down with these medical appointments, adjusting to a new diet, dealing with executive/administrative work and wrap-up. Actually, only two people (both good friends) on the dance club executive know about my medical condition. Everyone did see my prednisone look, but most don't know what's going on, or think it was because I was married recently or something. The reality is that I tell very few pple about my condition because I still apparently look and act healthier than most pple and with the exception of a few close friends that I look to for support and trust, I guess I am really a private person after all. I try not to think about my own condition, or get obssessed with it. I like to think there is a lot more about life out there, happier things - and I know there are. I am just thankful for what I do have. I am especially thankful for this support group and for my husband. You are all really amazing. The extended health coverage is from Alberta Blue Cross, I don't really know much about it. Somehow the provincial government (who has responsibility to administer the universal health care system we have in Canada) is involved in it. There is a waiting period of 3 months after you apply before you can qualify for coverage. Apparently though, once you get the coverage, it will cover the part that my work health benefits don't (currently my work only covers 80% - I've been told that I would still have to pay $200 as a result without this coverage). So we should apply soon, I guess. Right now, I do notice I get tired a little more easily...then again, I am out four nights a week dancing, and still like to do the social things with my friends on the weekends. Oh yeah, and I still have to do my dance club thing. ; ) So, I hope that by wrapping up my term on the dance club executive, I will have more time for rest - and can wait for some time until my EPO shots are paid. Sophia > Sophia, > > It's good to hear from you. I was beginning to get a little worried. > Thanks for checking in. You must be one awfully strong woman to be dealing > with dance club stuff on top of everything else. I'm also very impressed > that you're not stuffing your feelings about all this (as I would do) - and > I think you'll be a lot healthier for it in the long run. It's scarry stuff > to be looking over the edge of this kind of cliff... Hopefully all the > positive experiences here will stand you in good stead. We'll all be > rooting for you in the weeks and months ahead. > > A close relative did EPO for non-renal reasons - and if his experience is > any measure, it is really the wonder drug that everyone says it is. How > long is it going to take to hear back on the extended health coverage? Can > you explain a bit more about it? I hate to think of you suffering from any > more fatigue than you have to. > > Big hugs, > > Cy > > update > > > > > > > > Hi everyone, > > > > I've not been around much, it's been very busy here as I am trying > > to wrap up my term as dance club prez and also dealing with lots and > > lots of doctors appts for transplant evaluation, donor evaluation > > (for Kris), and pre-care dialysis stuff. > > > > I found that these various seminars on transplant, donor and pre- > > care very interesting - and also very scary. Honestly, it made me > > (and still does make me) sad that I have reached this stage. I have > > raged and cried and been depressed, but am slowly getting over it > > and accepting my condition. > > > > The meeting with pre-care turned out to be the most interesting. My > > dietician told me a lot about what my labs said - now I am on a low > > sodium-potassium-phosphorus diet, because I was borderline high in > > all those items and of course it's kinda dangerous. > > > > On a surprisingly positive note, the nurse and dietician told me > > they had never seen a renal patient with such low cholesterol > > numbers and in all other aspects, I am apparently in good health. > > > > My hemoglobin is rather low though (only about 100), so I am waiting > > for the neph to advise me if I need epo shots. Two things I don't > > like about this: it's injection only and I hate needles; and it > > also expensive. My work benefit plan does cover some of it, but > > it's still hundreds of dollars a month I would need to pay. So we > > are currently going to apply for additional extended health coverage > > to coverage that portion also. We'll see what happens. > > > > Otherwise, I seem all right for now, stable at 13% function. Not > > too many physical problems, thank goodness, maybe just a little more > > tired than usual due to low hemoglobin. > > > > Anyways, I've been keeping up with the posts and thinking about all > > of you. Hope you have a good week! > > > > Sophia > > > > > > > > > > > > > > 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 24, 2005 Report Share Posted April 24, 2005 I don't know how it works in Alberta, but most places, coverage for epo in the case of renal failure is free if it's given in hospital or at dialysis (this would apply to people who are actually esrd, not pre-dialysis), and for the rest, it's covered by drug plans not based on any time period, but based on a certain level of hemoglobin or hematocrit. The level is lower than normal hemoglobin, but high enough for the needed effect. You never get back to normal levels of hemoglobin when you're esrd, but you are maintained at was is considered an adequate level, and a good balance between the benefits and the risks of epo (higher blood pressure, risk of clotting). Pierre Re: update > > > Thank you Cy, > > Yes, this month has been an especially difficult time for me, it has > been wearing me down with these medical appointments, adjusting to a > new diet, dealing with executive/administrative work and wrap-up. > > Actually, only two people (both good friends) on the dance club > executive know about my medical condition. Everyone did see my > prednisone look, but most don't know what's going on, or think it > was because I was married recently or something. The reality is > that I tell very few pple about my condition because I still > apparently look and act healthier than most pple and with the > exception of a few close friends that I look to for support and > trust, I guess I am really a private person after all. > > I try not to think about my own condition, or get obssessed with > it. I like to think there is a lot more about life out there, > happier things - and I know there are. I am just thankful for what > I do have. I am especially thankful for this support group and for > my husband. You are all really amazing. > > The extended health coverage is from Alberta Blue Cross, I don't > really know much about it. Somehow the provincial government (who > has responsibility to administer the universal health care system we > have in Canada) is involved in it. There is a waiting period of 3 > months after you apply before you can qualify for coverage. > Apparently though, once you get the coverage, it will cover the part > that my work health benefits don't (currently my work only covers > 80% - I've been told that I would still have to pay $200 as a result > without this coverage). So we should apply soon, I guess. > > Right now, I do notice I get tired a little more easily...then > again, I am out four nights a week dancing, and still like to do the > social things with my friends on the weekends. Oh yeah, and I still > have to do my dance club thing. ; ) So, I hope that by wrapping up > my term on the dance club executive, I will have more time for rest - > and can wait for some time until my EPO shots are paid. > > Sophia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 I don't know how it works in Alberta, but most places, coverage for epo in the case of renal failure is free if it's given in hospital or at dialysis (this would apply to people who are actually esrd, not pre-dialysis), and for the rest, it's covered by drug plans not based on any time period, but based on a certain level of hemoglobin or hematocrit. The level is lower than normal hemoglobin, but high enough for the needed effect. You never get back to normal levels of hemoglobin when you're esrd, but you are maintained at was is considered an adequate level, and a good balance between the benefits and the risks of epo (higher blood pressure, risk of clotting). Pierre Re: update > > > Thank you Cy, > > Yes, this month has been an especially difficult time for me, it has > been wearing me down with these medical appointments, adjusting to a > new diet, dealing with executive/administrative work and wrap-up. > > Actually, only two people (both good friends) on the dance club > executive know about my medical condition. Everyone did see my > prednisone look, but most don't know what's going on, or think it > was because I was married recently or something. The reality is > that I tell very few pple about my condition because I still > apparently look and act healthier than most pple and with the > exception of a few close friends that I look to for support and > trust, I guess I am really a private person after all. > > I try not to think about my own condition, or get obssessed with > it. I like to think there is a lot more about life out there, > happier things - and I know there are. I am just thankful for what > I do have. I am especially thankful for this support group and for > my husband. You are all really amazing. > > The extended health coverage is from Alberta Blue Cross, I don't > really know much about it. Somehow the provincial government (who > has responsibility to administer the universal health care system we > have in Canada) is involved in it. There is a waiting period of 3 > months after you apply before you can qualify for coverage. > Apparently though, once you get the coverage, it will cover the part > that my work health benefits don't (currently my work only covers > 80% - I've been told that I would still have to pay $200 as a result > without this coverage). So we should apply soon, I guess. > > Right now, I do notice I get tired a little more easily...then > again, I am out four nights a week dancing, and still like to do the > social things with my friends on the weekends. Oh yeah, and I still > have to do my dance club thing. ; ) So, I hope that by wrapping up > my term on the dance club executive, I will have more time for rest - > and can wait for some time until my EPO shots are paid. > > Sophia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 I don't know how it works in Alberta, but most places, coverage for epo in the case of renal failure is free if it's given in hospital or at dialysis (this would apply to people who are actually esrd, not pre-dialysis), and for the rest, it's covered by drug plans not based on any time period, but based on a certain level of hemoglobin or hematocrit. The level is lower than normal hemoglobin, but high enough for the needed effect. You never get back to normal levels of hemoglobin when you're esrd, but you are maintained at was is considered an adequate level, and a good balance between the benefits and the risks of epo (higher blood pressure, risk of clotting). Pierre Re: update > > > Thank you Cy, > > Yes, this month has been an especially difficult time for me, it has > been wearing me down with these medical appointments, adjusting to a > new diet, dealing with executive/administrative work and wrap-up. > > Actually, only two people (both good friends) on the dance club > executive know about my medical condition. Everyone did see my > prednisone look, but most don't know what's going on, or think it > was because I was married recently or something. The reality is > that I tell very few pple about my condition because I still > apparently look and act healthier than most pple and with the > exception of a few close friends that I look to for support and > trust, I guess I am really a private person after all. > > I try not to think about my own condition, or get obssessed with > it. I like to think there is a lot more about life out there, > happier things - and I know there are. I am just thankful for what > I do have. I am especially thankful for this support group and for > my husband. You are all really amazing. > > The extended health coverage is from Alberta Blue Cross, I don't > really know much about it. Somehow the provincial government (who > has responsibility to administer the universal health care system we > have in Canada) is involved in it. There is a waiting period of 3 > months after you apply before you can qualify for coverage. > Apparently though, once you get the coverage, it will cover the part > that my work health benefits don't (currently my work only covers > 80% - I've been told that I would still have to pay $200 as a result > without this coverage). So we should apply soon, I guess. > > Right now, I do notice I get tired a little more easily...then > again, I am out four nights a week dancing, and still like to do the > social things with my friends on the weekends. Oh yeah, and I still > have to do my dance club thing. ; ) So, I hope that by wrapping up > my term on the dance club executive, I will have more time for rest - > and can wait for some time until my EPO shots are paid. > > Sophia > Quote Link to comment Share on other sites More sharing options...
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