Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 Hi , I'm so sorry to learn of that increased creatinine. IHowever, 'm glad that your neph has switched to more frequent monitoring and has you thinking about dialysis. As Pierre has often said, that is not something one wants to get caught off guard about. You are a wise woman to minimize surprises. I am very unfamiliar with home hemo. In the US, a patient has to be well established on regular hemo first before home hemo is considered. I understand that it is also important to have a partner in the home. Pierre recently sent a great piece on different varieties of dialysis - hopefully someone can put their hands on it - and answer your Tums question as well. Here's hoping that sharp decline flattens out a bit... Cy hotchkissm wrote: Hi everyone. Well, I redid my lab tests and my values from 2 weeks ago did not change, so it seems tha I have taken a fairly big leap in creatinine from 3.3 to 4.6 over about 3 months. So, the neph has switched to monthly monitoring and she has recommended that I attend the dialysis info days and transplant info day offered at the hospital in August. I may have a bit of time left, (who knows?)but I want to be completely prepared with as few surprises as possible. If a living donor transplant does not pan out, her advice is to seriously consider Nocturnal Home Hemo. Is anyone on it? It takes a while to train for and there is a waiting list of 2-3 months for the machine. It sounds like a good option, though the responsibility is a bit scary. Of course, I am more or less uneducated at the moment. In addition, for the first time my phosphorus was a bit high. She did not impose any dietary restrictions, but added a phosphate binder to my regimen. I have been given Caltrate tablets that I am supposed to crush and take before meals. Very nasty. On their website they say they have chewables, but I can't seem to find them in Australia. Is this the same as Tums? I would rather take those, even if I have to get my sister to send them from the States. Are there any other alternatives? Thanks everyone, 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 June 25, 2004 Report Share Posted June 25, 2004 Hi , I'm so sorry to learn of that increased creatinine. IHowever, 'm glad that your neph has switched to more frequent monitoring and has you thinking about dialysis. As Pierre has often said, that is not something one wants to get caught off guard about. You are a wise woman to minimize surprises. I am very unfamiliar with home hemo. In the US, a patient has to be well established on regular hemo first before home hemo is considered. I understand that it is also important to have a partner in the home. Pierre recently sent a great piece on different varieties of dialysis - hopefully someone can put their hands on it - and answer your Tums question as well. Here's hoping that sharp decline flattens out a bit... Cy hotchkissm wrote: Hi everyone. Well, I redid my lab tests and my values from 2 weeks ago did not change, so it seems tha I have taken a fairly big leap in creatinine from 3.3 to 4.6 over about 3 months. So, the neph has switched to monthly monitoring and she has recommended that I attend the dialysis info days and transplant info day offered at the hospital in August. I may have a bit of time left, (who knows?)but I want to be completely prepared with as few surprises as possible. If a living donor transplant does not pan out, her advice is to seriously consider Nocturnal Home Hemo. Is anyone on it? It takes a while to train for and there is a waiting list of 2-3 months for the machine. It sounds like a good option, though the responsibility is a bit scary. Of course, I am more or less uneducated at the moment. In addition, for the first time my phosphorus was a bit high. She did not impose any dietary restrictions, but added a phosphate binder to my regimen. I have been given Caltrate tablets that I am supposed to crush and take before meals. Very nasty. On their website they say they have chewables, but I can't seem to find them in Australia. Is this the same as Tums? I would rather take those, even if I have to get my sister to send them from the States. Are there any other alternatives? Thanks everyone, 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 June 25, 2004 Report Share Posted June 25, 2004 Hi , I'm so sorry to learn of that increased creatinine. IHowever, 'm glad that your neph has switched to more frequent monitoring and has you thinking about dialysis. As Pierre has often said, that is not something one wants to get caught off guard about. You are a wise woman to minimize surprises. I am very unfamiliar with home hemo. In the US, a patient has to be well established on regular hemo first before home hemo is considered. I understand that it is also important to have a partner in the home. Pierre recently sent a great piece on different varieties of dialysis - hopefully someone can put their hands on it - and answer your Tums question as well. Here's hoping that sharp decline flattens out a bit... Cy hotchkissm wrote: Hi everyone. Well, I redid my lab tests and my values from 2 weeks ago did not change, so it seems tha I have taken a fairly big leap in creatinine from 3.3 to 4.6 over about 3 months. So, the neph has switched to monthly monitoring and she has recommended that I attend the dialysis info days and transplant info day offered at the hospital in August. I may have a bit of time left, (who knows?)but I want to be completely prepared with as few surprises as possible. If a living donor transplant does not pan out, her advice is to seriously consider Nocturnal Home Hemo. Is anyone on it? It takes a while to train for and there is a waiting list of 2-3 months for the machine. It sounds like a good option, though the responsibility is a bit scary. Of course, I am more or less uneducated at the moment. In addition, for the first time my phosphorus was a bit high. She did not impose any dietary restrictions, but added a phosphate binder to my regimen. I have been given Caltrate tablets that I am supposed to crush and take before meals. Very nasty. On their website they say they have chewables, but I can't seem to find them in Australia. Is this the same as Tums? I would rather take those, even if I have to get my sister to send them from the States. Are there any other alternatives? Thanks everyone, 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 June 25, 2004 Report Share Posted June 25, 2004 I'm sorry to hear the rapid rise was for real. It is great that your neph is getting you prepared for dialysis or transplant. I hope things go as smoothly as possible for you and you can hold out for a while before having to start on things. Amy another update > Hi everyone. > > Well, I redid my lab tests and my values from 2 weeks ago did not > change, so it seems tha I have taken a fairly big leap in creatinine > from 3.3 to 4.6 over about 3 months. > > So, the neph has switched to monthly monitoring and she has > recommended that I attend the dialysis info days and transplant info > day offered at the hospital in August. I may have a bit of time left, > (who knows?)but I want to be completely prepared with as few > surprises as possible. > > If a living donor transplant does not pan out, her advice is to > seriously consider Nocturnal Home Hemo. Is anyone on it? It takes a > while to train for and there is a waiting list of 2-3 months for the > machine. It sounds like a good option, though the responsibility is a > bit scary. Of course, I am more or less uneducated at the moment. > > In addition, for the first time my phosphorus was a bit high. She did > not impose any dietary restrictions, but added a phosphate binder to > my regimen. I have been given Caltrate tablets that I am supposed to > crush and take before meals. Very nasty. On their website they say > they have chewables, but I can't seem to find them in Australia. Is > this the same as Tums? I would rather take those, even if I have to > get my sister to send them from the States. Are there any other > alternatives? > > Thanks everyone, > > > > > > > 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 June 25, 2004 Report Share Posted June 25, 2004 Sorry you've reached this point, , but I'm glad your nephrologist is taking the necessary steps. Attending the pre-dialysis class or classes helps to feel we have more control over what is going on. It's also best to be prepared. I'm not on noturnal home hemo - we have a program here, but with the underfunding of it the way it is, there are way more applicants than they can handle. I don't mind though, because I don't think I would want to do it anyway if I'm not too far from getting a transplant. The requirements for noturnal home hemo are the same as for home hemodialysis in general. First, you have to be a stable dialysis patient. You basically need suitable accommodations (and usually access to plumbing that isn't too complicated or prohibited (like if you rent, for example). You need a partner to train along with you, and that person has to be reliable enough to be there with you when you do your dialysis. The other thing that many people don't realize is that you DO have to needle yourself. Not everyone has the stomach for that. Personally, I like just going to the dialysis centre and letting " them " look after things. I just relax as it's going on. But home hemodialysis is certainly a choice many people make or would like to make. The advantages are mainly that you do it at home, and so you don't have to go to a dialysis centre for a specific time, and because it's done more often, it may be better for you healthwise. On the other hand, you do have to do it yourself all the time, respond to the inevitable alarms for things like poor conductivity, poor blood flow (like when a tube kinks, and many other things. When a problem arises, you have to telephone the nurse, and then do whatever has to be done yourself. Here, they just tell patients to use plain, ordinary TUMS as their phosphorus-binder. It's cheap, and, calcium is calcium. As far as I know, any calcium carbonate is fine, as there's no difference, as long as you have the same dose. For example, I'm using regular TUMS, but some people I know are on the extra strength TUMS, simply because they need more to maintain acceptable phosphorus levels. I've never heard of having to crush them before. I mean, you have to chew them anyway. We have the Caltrate brand here as well, but I've never looked at it. Pierre another update > Hi everyone. > > Well, I redid my lab tests and my values from 2 weeks ago did not > change, so it seems tha I have taken a fairly big leap in creatinine > from 3.3 to 4.6 over about 3 months. > > So, the neph has switched to monthly monitoring and she has > recommended that I attend the dialysis info days and transplant info > day offered at the hospital in August. I may have a bit of time left, > (who knows?)but I want to be completely prepared with as few > surprises as possible. > > If a living donor transplant does not pan out, her advice is to > seriously consider Nocturnal Home Hemo. Is anyone on it? It takes a > while to train for and there is a waiting list of 2-3 months for the > machine. It sounds like a good option, though the responsibility is a > bit scary. Of course, I am more or less uneducated at the moment. > > In addition, for the first time my phosphorus was a bit high. She did > not impose any dietary restrictions, but added a phosphate binder to > my regimen. I have been given Caltrate tablets that I am supposed to > crush and take before meals. Very nasty. On their website they say > they have chewables, but I can't seem to find them in Australia. Is > this the same as Tums? I would rather take those, even if I have to > get my sister to send them from the States. Are there any other > alternatives? > > Thanks everyone, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 Thanks, Pierre and everyone elso who replied. The Caltrate tablets here are not chewables, so its gross. They do have an option that are 'chews'--like a taffy sort of consistency. They are not like Tums which I equate to chewing chalk. I did find Mylanta tablets which are calcium carbonate and magnesium. Since I take magnesium anyway in an effort to reduce cramping, I guess its OK. Another query--I have read that many kidney failure patients fail to produce much urine, hence the liquid intake restriction while on dialysis. I know that you have mentioned that that is not always the case with IGAN, Pierre. How do you know if your're urine output will decrease? Does it happen gradually? If at 20-25 percent function, since I still have good output, is it likely to get worse quickly? What is 'normal' output anyway? Thanks. > Sorry you've reached this point, , but I'm glad your nephrologist is > taking the necessary steps. Attending the pre-dialysis class or classes > helps to feel we have more control over what is going on. It's also best to > be prepared. > > I'm not on noturnal home hemo - we have a program here, but with the > underfunding of it the way it is, there are way more applicants than they > can handle. I don't mind though, because I don't think I would want to do it > anyway if I'm not too far from getting a transplant. > > The requirements for noturnal home hemo are the same as for home > hemodialysis in general. First, you have to be a stable dialysis patient. > You basically need suitable accommodations (and usually access to plumbing > that isn't too complicated or prohibited (like if you rent, for example). > You need a partner to train along with you, and that person has to be > reliable enough to be there with you when you do your dialysis. The other > thing that many people don't realize is that you DO have to needle yourself. > Not everyone has the stomach for that. > > Personally, I like just going to the dialysis centre and letting " them " look > after things. I just relax as it's going on. But home hemodialysis is > certainly a choice many people make or would like to make. The advantages > are mainly that you do it at home, and so you don't have to go to a dialysis > centre for a specific time, and because it's done more often, it may be > better for you healthwise. On the other hand, you do have to do it yourself > all the time, respond to the inevitable alarms for things like poor > conductivity, poor blood flow (like when a tube kinks, and many other > things. When a problem arises, you have to telephone the nurse, and then do > whatever has to be done yourself. > > Here, they just tell patients to use plain, ordinary TUMS as their > phosphorus-binder. It's cheap, and, calcium is calcium. As far as I know, > any calcium carbonate is fine, as there's no difference, as long as you have > the same dose. For example, I'm using regular TUMS, but some people I know > are on the extra strength TUMS, simply because they need more to maintain > acceptable phosphorus levels. I've never heard of having to crush them > before. I mean, you have to chew them anyway. We have the Caltrate brand > here as well, but I've never looked at it. > > Pierre > > another update > > > > Hi everyone. > > > > Well, I redid my lab tests and my values from 2 weeks ago did not > > change, so it seems tha I have taken a fairly big leap in creatinine > > from 3.3 to 4.6 over about 3 months. > > > > So, the neph has switched to monthly monitoring and she has > > recommended that I attend the dialysis info days and transplant info > > day offered at the hospital in August. I may have a bit of time left, > > (who knows?)but I want to be completely prepared with as few > > surprises as possible. > > > > If a living donor transplant does not pan out, her advice is to > > seriously consider Nocturnal Home Hemo. Is anyone on it? It takes a > > while to train for and there is a waiting list of 2-3 months for the > > machine. It sounds like a good option, though the responsibility is a > > bit scary. Of course, I am more or less uneducated at the moment. > > > > In addition, for the first time my phosphorus was a bit high. She did > > not impose any dietary restrictions, but added a phosphate binder to > > my regimen. I have been given Caltrate tablets that I am supposed to > > crush and take before meals. Very nasty. On their website they say > > they have chewables, but I can't seem to find them in Australia. Is > > this the same as Tums? I would rather take those, even if I have to > > get my sister to send them from the States. Are there any other > > alternatives? > > > > Thanks everyone, > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Hi Kristy, A creatinine of 1.3 is still pretty good. The important thing will be to keep your BP under control to protect your kidney function. It sounds like your Neph is keeping a close eye on you so you must be in good hands. In a message dated 7/8/2004 4:16:59 PM Eastern Daylight Time, " nursekris04 " writes: >Hey, everybody: >Just wanted to let you know how my neph visit went today. My >creatine was 1.3 - which is good, although it originally was 0.6 in >the beginning (2 yrs. ago). He said the UA looked about like last >time - plenty of blood and protein. He seems to think that I am now >in the early stages of CRF. My blood pressure has been going all >over the place...one day it will be extremely high and the next it >will be low. I guess that is to be expected. I now have to take 2 >more months of antibiotics, at least. He also increased my Altace >and started me on a BP medication. I have to go back in 3 wks. and I >have to have another biopsy in August (he's waiting because I don't >have any health insurance right now). So, I'm taking my fiance's >advice and just taking it one day at a time...that's all I can do. >That and look to God for the strength to get through this. Thanks >again for listening to me...it really helps. I'll be talking to you >soon... > > >Kristy > > > > >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 July 8, 2004 Report Share Posted July 8, 2004 Hi Kristy, A creatinine of 1.3 is still pretty good. The important thing will be to keep your BP under control to protect your kidney function. It sounds like your Neph is keeping a close eye on you so you must be in good hands. In a message dated 7/8/2004 4:16:59 PM Eastern Daylight Time, " nursekris04 " writes: >Hey, everybody: >Just wanted to let you know how my neph visit went today. My >creatine was 1.3 - which is good, although it originally was 0.6 in >the beginning (2 yrs. ago). He said the UA looked about like last >time - plenty of blood and protein. He seems to think that I am now >in the early stages of CRF. My blood pressure has been going all >over the place...one day it will be extremely high and the next it >will be low. I guess that is to be expected. I now have to take 2 >more months of antibiotics, at least. He also increased my Altace >and started me on a BP medication. I have to go back in 3 wks. and I >have to have another biopsy in August (he's waiting because I don't >have any health insurance right now). So, I'm taking my fiance's >advice and just taking it one day at a time...that's all I can do. >That and look to God for the strength to get through this. Thanks >again for listening to me...it really helps. I'll be talking to you >soon... > > >Kristy > > > > >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 July 8, 2004 Report Share Posted July 8, 2004 Hi Kristy, A creatinine of 1.3 is still pretty good. The important thing will be to keep your BP under control to protect your kidney function. It sounds like your Neph is keeping a close eye on you so you must be in good hands. In a message dated 7/8/2004 4:16:59 PM Eastern Daylight Time, " nursekris04 " writes: >Hey, everybody: >Just wanted to let you know how my neph visit went today. My >creatine was 1.3 - which is good, although it originally was 0.6 in >the beginning (2 yrs. ago). He said the UA looked about like last >time - plenty of blood and protein. He seems to think that I am now >in the early stages of CRF. My blood pressure has been going all >over the place...one day it will be extremely high and the next it >will be low. I guess that is to be expected. I now have to take 2 >more months of antibiotics, at least. He also increased my Altace >and started me on a BP medication. I have to go back in 3 wks. and I >have to have another biopsy in August (he's waiting because I don't >have any health insurance right now). So, I'm taking my fiance's >advice and just taking it one day at a time...that's all I can do. >That and look to God for the strength to get through this. Thanks >again for listening to me...it really helps. I'll be talking to you >soon... > > >Kristy > > > > >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...
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