Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 Hi Don, A very warm welcome to the group. I am sorry you have been diagnosed with IgAN and that is has progressed this far. I want to check with you to make sure that your doctor talked to you about a low potassium diet. If not, please call your Neph and inquire about a referral to a renal dietitian. My potassium has a tendency to run high as well and it is important to be diligent with potassium intake. Do you recall if your blood pressure was OK? A couple of dangers with kidney disease that has advanced are high blood pressure and also anemia. Hopefully your doctor checked both for you. It is very important to keep an eye on your BP to protect the kidney function you have remaining because high BP is a risk factor for kidney failure all by itself. Please keep us posted and let us know how you are doing. Welcome again! In a message dated 5/24/2005 10:48:59 A.M. Pacific Daylight Time, cochi30@... writes: Well Hello all, I am Don and I was just diagnosed with IgAN today from a biopsy. I am 58 yrs and was told there is significant inflammation in the fibrosis (whatever). Looks like I've had this for a while. Creatnine is about 2.7, potassium about 6. I am looking at end-stage renal repl briefings and such around July. I suppose the drs will know more about progression in about 6 months since they have no historical data on me. Thanks for listening. Don Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 Hi Don, Your blood pressure is great. Keep a close eye on it to make sure it does not rise too much. Hopefully your doctor will check your potassium levels again on your Thursday draw after you adjust to the lower dose of Lisinopril. My doctor just told me to avoid high potassium foods and limit my overall potassium intake to no more than 2000 mg/day but it is important that you get specific recommendations from your Nephrologist so that your diet is customized according to your individual lab results. I am a big advocate of exercise. I am down to 18% kidney function now and it is harder for me but I still try to get on the treadmill for 3 miles several times a week. In a message dated 5/24/2005 12:34:37 P.M. Pacific Daylight Time, cochi30@... writes: Hi , My blood pressure is around 122/65 and I am on lisinopril to keep it low. The dr is also starting me on fish oil therapy. He didn't mention a low-potassium diet but I printed out something from the internet. I will be seeing my dr in mid-June and will ask about the renal diet; maybe prior to that. I have to give more labs on Thursday. What about exercise? Vigorous/strenuous - doesn't that increase bp?? Thanks! Don Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 Hi Don. Welcome to the group that nobody hopes to join unless they have to. I think that pre-dialysis treatment options briefings is a good idea. You could still end up being years away from actually needing to make a decision, but it's better to be prepared early and know what the options are than otherwise, just in case kidney function should decline faster. Everyone's different, but to give you an idea, I was at about that serum creatinine around 1999-2000, and I started dialysis in late 2002 (when my creatinine was approaching 6, which was the appropriate time to start for my size). Your potassium is high though. Have you been told to limit potassium in your diet at this point? Pierre My Intro > Well Hello all, > I am Don and I was just diagnosed with IgAN today from a biopsy. I am > 58 yrs and was told there is significant inflammation in the fibrosis > (whatever). Looks like I've had this for a while. Creatnine is about > 2.7, potassium about 6. I am looking at end-stage renal repl briefings > and such around July. I suppose the drs will know more about > progression in about 6 months since they have no historical data on me. > > Thanks for listening. > > Don > > > > > > > > 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 May 24, 2005 Report Share Posted May 24, 2005 Welcome Don you have found a good place... --- cochi30 wrote: > Well Hello all, > I am Don and I was just diagnosed with IgAN today > from a biopsy. I am > 58 yrs and was told there is significant > inflammation in the fibrosis > (whatever). Looks like I've had this for a while. > Creatnine is about > 2.7, potassium about 6. I am looking at end-stage > renal repl briefings > and such around July. I suppose the drs will know > more about > progression in about 6 months since they have no > historical data on me. > > Thanks for listening. > > Don > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 Hi Don, I was 57 when my IGAN was diagnosed my readings was very simular to yours and progressed very slowly until I started having problems with my heart. I got to a point that I needed a heart cath. to determine blockage. On July 1st 2004 I had a quadruple bypass on my heart. My kidnays wasn't able to filter the dyes they used and it put me in ESRD. I have been on dialysis since July. I am on home hemo dialysis or will be when I get back from vacation the first week in June. My advise is watch your diet and listen to your doctors. Ray cochi30 wrote: Well Hello all, I am Don and I was just diagnosed with IgAN today from a biopsy. I am 58 yrs and was told there is significant inflammation in the fibrosis (whatever). Looks like I've had this for a while. Creatnine is about 2.7, potassium about 6. I am looking at end-stage renal repl briefings and such around July. I suppose the drs will know more about progression in about 6 months since they have no historical data on me. Thanks for listening. Don 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 May 24, 2005 Report Share Posted May 24, 2005 Hi Pierre, The dr didn't mention a diet but thought the high potassium level could be attributed to the dosage of the ACE Inhibitor (LISINOPRIL); I was taking 7.5mg daily, but was backed off to 5mg daily because of the potassium. The dr is starting me on fish oil therapy as well. So, I'll see how it goes. I have printed a low-potassium diet from the internet today so that I can watch my intake. In your case, it took two years to go from 2.7 creatnine to close to 6. How did you deal with this major life change? Is a transplant in your future? > Hi Don. Welcome to the group that nobody hopes to join unless they have to. > I think that pre-dialysis treatment options briefings is a good idea. You > could still end up being years away from actually needing to make a > decision, but it's better to be prepared early and know what the options are > than otherwise, just in case kidney function should decline faster. > Everyone's different, but to give you an idea, I was at about that serum > creatinine around 1999-2000, and I started dialysis in late 2002 (when my > creatinine was approaching 6, which was the appropriate time to start for my > size). Your potassium is high though. Have you been told to limit potassium > in your diet at this point? > > Pierre > > > My Intro > > > > Well Hello all, > > I am Don and I was just diagnosed with IgAN today from a biopsy. I am > > 58 yrs and was told there is significant inflammation in the fibrosis > > (whatever). Looks like I've had this for a while. Creatnine is about > > 2.7, potassium about 6. I am looking at end-stage renal repl briefings > > and such around July. I suppose the drs will know more about > > progression in about 6 months since they have no historical data on me. > > > > Thanks for listening. > > > > Don > > > > > > > > > > > > > > > > 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 May 24, 2005 Report Share Posted May 24, 2005 Hi , My blood pressure is around 122/65 and I am on lisinopril to keep it low. The dr is also starting me on fish oil therapy. He didn't mention a low-potassium diet but I printed out something from the internet. I will be seeing my dr in mid-June and will ask about the renal diet; maybe prior to that. I have to give more labs on Thursday. What about exercise? Vigorous/strenuous - doesn't that increase bp?? Thanks! Don > > Hi Don, > > A very warm welcome to the group. I am sorry you have been diagnosed with > IgAN and that is has progressed this far. > > I want to check with you to make sure that your doctor talked to you about a > low potassium diet. If not, please call your Neph and inquire about a > referral to a renal dietitian. My potassium has a tendency to run high as well > and it is important to be diligent with potassium intake. > > Do you recall if your blood pressure was OK? A couple of dangers with > kidney disease that has advanced are high blood pressure and also anemia. > Hopefully your doctor checked both for you. It is very important to keep an eye on > your BP to protect the kidney function you have remaining because high BP is > a risk factor for kidney failure all by itself. > > Please keep us posted and let us know how you are doing. > > Welcome again! > > > > In a message dated 5/24/2005 10:48:59 A.M. Pacific Daylight Time, > cochi30@y... writes: > > Well Hello all, > I am Don and I was just diagnosed with IgAN today from a biopsy. I am > 58 yrs and was told there is significant inflammation in the fibrosis > (whatever). Looks like I've had this for a while. Creatnine is about > 2.7, potassium about 6. I am looking at end-stage renal repl briefings > and such around July. I suppose the drs will know more about > progression in about 6 months since they have no historical data on me. > > Thanks for listening. > > Don > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 Hi Ray, Wow. I didn't realize kidneys could affect the heart until today after being told about the potassium! How old are you now? Have you started the home dialysis yet? How will that work for you. Can one still keep a job as well? You said you were on vacation, so I assume you still are working. I'll need to work till I drop, if you know what I mean:)!!! Regards, Don > Well Hello all, > I am Don and I was just diagnosed with IgAN today from a biopsy. I am > 58 yrs and was told there is significant inflammation in the fibrosis > (whatever). Looks like I've had this for a while. Creatnine is about > 2.7, potassium about 6. I am looking at end-stage renal repl briefings > and such around July. I suppose the drs will know more about > progression in about 6 months since they have no historical data on me. > > Thanks for listening. > > Don > > > > > > > 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 May 24, 2005 Report Share Posted May 24, 2005 Hi Ray, Wow. I didn't realize kidneys could affect the heart until today after being told about the potassium! How old are you now? Have you started the home dialysis yet? How will that work for you. Can one still keep a job as well? You said you were on vacation, so I assume you still are working. I'll need to work till I drop, if you know what I mean:)!!! Regards, Don > Well Hello all, > I am Don and I was just diagnosed with IgAN today from a biopsy. I am > 58 yrs and was told there is significant inflammation in the fibrosis > (whatever). Looks like I've had this for a while. Creatnine is about > 2.7, potassium about 6. I am looking at end-stage renal repl briefings > and such around July. I suppose the drs will know more about > progression in about 6 months since they have no historical data on me. > > Thanks for listening. > > Don > > > > > > > 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 May 24, 2005 Report Share Posted May 24, 2005 Don I am 69 yrs old. I amretired from my secular job. I do pastor a church. I have been on training for the past eight weeks. The plans are to bring the equipment to my home when I get home and it will be done here from then on. My helper and I are ready there was a delay in delivery of my machine. the RO failed a culture test and had to be disassembled, cleaned and rechecked which has been done. We will use my machine tomorrow for our dialysis.We will go in and turn on the RO let it settle check the water purity, conductivity, PH, and make sure all jugs are clean and no cholorine anywhere. We then turn on the dialysis machine and let it self test, install the tubing and prime the same, and run final test on it. At this point I will put the cream on my arm to numb the area. After the machine finish. I insert the needles into the graft insert heparin to prevent clotting. Then I connect the tubing to the needles and set up and run the dialysis. per the calculations of my gain from dry waight. I will continuie at three per week (4 hours) until I get back home then we go daily. Ray cochi30 wrote:Hi Ray, Wow. I didn't realize kidneys could affect the heart until today after being told about the potassium! How old are you now? Have you started the home dialysis yet? How will that work for you. Can one still keep a job as well? You said you were on vacation, so I assume you still are working. I'll need to work till I drop, if you know what I mean:)!!! Regards, Don > Well Hello all, > I am Don and I was just diagnosed with IgAN today from a biopsy. I am > 58 yrs and was told there is significant inflammation in the fibrosis > (whatever). Looks like I've had this for a while. Creatnine is about > 2.7, potassium about 6. I am looking at end-stage renal repl briefings > and such around July. I suppose the drs will know more about > progression in about 6 months since they have no historical data on me. > > Thanks for listening. > > Don > > > > > > > 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 May 25, 2005 Report Share Posted May 25, 2005 Ray, Sounds like a whole lot to do and be concerned about and very complicated and precise. Do you feel confident about using this method? Apparently you do and you are thoroughly familiar with it. Did you choose this option over the other? Looks like in July I will be going to some briefings about all of this and what to look forward to. Good that you are pastoring a church - faith matters! God bless you in your ministry. REgards, Don > > Well Hello all, > > I am Don and I was just diagnosed with IgAN today from a biopsy. I am > > 58 yrs and was told there is significant inflammation in the fibrosis > > (whatever). Looks like I've had this for a while. Creatnine is about > > 2.7, potassium about 6. I am looking at end-stage renal repl briefings > > and such around July. I suppose the drs will know more about > > progression in about 6 months since they have no historical data on me. > > > > Thanks for listening. > > > > Don > > > > > > > > > > > > > > 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 12, 2006 Report Share Posted April 12, 2006 In a message dated 4/12/2006 11:13:49 A.M. Central Standard Time, ann_gatewood@... writes: I am really concerned about his social skills. He has a shy personality. Because of his hearing loss and delay in lauguage, he often does not know what to do when placed in a group setting. Does any one have any suggestions to overcome this ? Hi Ann, welcome back! My youngest son was extremely shy for a long time. His teachers were great about not forcing him into situations but encouraging him to gain confidence with activities that suited him. They always paired him up with a buddy that he was comfortable with and this went a long way in helping him in group situations. Group situations are often difficult for deaf/hh kids because the conversation moves at a faster pace and it can be tough to follow what is being said. Using a pass around mike with the FM system can help to slow down the discussions. Having the teacher repeat or paraphrase what is being said helps also. Putz Illinois Families for Hands & Voices _www.handsandvoices.org_ (http://www.handsandvoices.org/) _www.ilhandsandvoices.org_ (http://www.ilhandsandvoices.org/) Email: support@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 hi all. my name is sandy i live in south australia i am 55 , this yr i had my normal mammogram and found abnormal tumour(no lump), yeps turned out to be stage 1 cancer i have had lumpectomy and rads, i do not have any support gone through this alone, hope to make new friends here and help anyone that has not had this experrince. I am taking arimidex and not coping well on it the hot flashes are like i am in my sauna really bad, dizzy,feel very sick, aches and pains does anyone else have these problems with this drug??? hugs sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 hi all. my name is sandy i live in south australia i am 55 , this yr i had my normal mammogram and found abnormal tumour(no lump), yeps turned out to be stage 1 cancer i have had lumpectomy and rads, i do not have any support gone through this alone, hope to make new friends here and help anyone that has not had this experrince. I am taking arimidex and not coping well on it the hot flashes are like i am in my sauna really bad, dizzy,feel very sick, aches and pains does anyone else have these problems with this drug??? hugs sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 hi all. my name is sandy i live in south australia i am 55 , this yr i had my normal mammogram and found abnormal tumour(no lump), yeps turned out to be stage 1 cancer i have had lumpectomy and rads, i do not have any support gone through this alone, hope to make new friends here and help anyone that has not had this experrince. I am taking arimidex and not coping well on it the hot flashes are like i am in my sauna really bad, dizzy,feel very sick, aches and pains does anyone else have these problems with this drug??? hugs sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2006 Report Share Posted December 1, 2006 Hi Sandy, I just wanted you to know, you are in no way alone any longer. We on the list are here for any support you might need! The ladies are so special. They have so much knowledge, love and all to share with you. I myself do not have an answer about chemo as I only had 2 mastectomies, but that was 21 years ago. There is life after breast cancer and with the support you'll get on this list, you'll enjoy the life after breast cancer too! -- Angel (A.K.A. Mari) mfgershman@... Please click each day to help others, IT'S FREE! http://www.thebreastcancersite.com/cgi-bin/WebObjects/CTDSites Quote Link to comment Share on other sites More sharing options...
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