Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 Congratulations on another month! You gotta keep holding the line. I'm counting on you :-) It is remarkable that your are not having problems with potassium , sodium, calcium, hemoglobin, and phosphorus all look good. In that regard, you are doing much better than I am. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 Here's my situation report. Well, it looks like I've bought myself at least another month before dialysis. My latest lab results show some improvement in serum creatinine. So, still right on the threshold of end-stage, but, my kidneys are hanging on to about 15% kidney function. Remarkably, potassium, sodium, calcium, hemoglobin, phosphorus, etc. all look good, and blood pressure too. No changes in diet needed. The only thing that doesn't look as good is the 5 grams/day of proteinuria. I've never had heavy proteinuria during the past 25 years, until just these past few months. Apparently, in my case, it's simply due to the damage in there, and it probably won't improve. Some of you may recall it was 5 grams last month too. No chance of being on prednisone for it -- it wouldn't make any difference, since I'm so close to needing dialysis. I have a bit of ankle swelling, but my neph thinks it's a side effect of the felodipine I'm taking for blood pressure, rather than fluid retention. Hold the congratulations though. The situation at this stage can change rapidly. If it does, I'm ready. They tell me I have a fistula of Olympic proportions! It is a bit snakey however. I go for an ultrasound of it next week, so they will have a clearer picture as to where to insert the needles when I start dialysis. By the way, I've been told I can do just about anything with my fistula arm short of inflicting a direct trauma on it, and, unfortunately for me, sleeping on that arm. Other than that, I can lift anything, or do anything. And only six months after the surgery, the incision scar is nearly invisible. Pierre It was almost suppertime by the time I got out of there, so, I rewarded myself for the good results with a 6 inch meat ball sub from Subway : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 It is good to hear that you have bought yourself another month. I just went for my monthly today as well and my prognosis is similiar. I still have 12% left, my serum raised to about a 9.5, but all other things stayed about the same, blood pressure was down even. They did however start me on EPO shots, to begin friday, but I'm looking foreward to that because I can barely climb stairs without having to sit down and rest. I know how you feeling going each month, having blood drawn, then holding your breath until the next day when the labs come in. I wish you continued good fortune in avoiding dialysis, though I fear it will come soon for us both. > Here's my situation report. > > Well, it looks like I've bought myself at least another month before > dialysis. My latest lab results show some improvement in serum creatinine. > So, still right on the threshold of end-stage, but, my kidneys are hanging > on to about 15% kidney function. Remarkably, potassium, sodium, calcium, > hemoglobin, phosphorus, etc. all look good, and blood pressure too. No > changes in diet needed. The only thing that doesn't look as good is the 5 > grams/day of proteinuria. I've never had heavy proteinuria during the past > 25 years, until just these past few months. Apparently, in my case, it's > simply due to the damage in there, and it probably won't improve. Some of > you may recall it was 5 grams last month too. No chance of being on > prednisone for it -- it wouldn't make any difference, since I'm so close to > needing dialysis. I have a bit of ankle swelling, but my neph thinks it's a > side effect of the felodipine I'm taking for blood pressure, rather than > fluid retention. > > Hold the congratulations though. The situation at this stage can change > rapidly. If it does, I'm ready. They tell me I have a fistula of Olympic > proportions! It is a bit snakey however. I go for an ultrasound of it next > week, so they will have a clearer picture as to where to insert the needles > when I start dialysis. By the way, I've been told I can do just about > anything with my fistula arm short of inflicting a direct trauma on it, and, > unfortunately for me, sleeping on that arm. Other than that, I can lift > anything, or do anything. And only six months after the surgery, the > incision scar is nearly invisible. > > Pierre > It was almost suppertime by the time I got out of there, so, I rewarded > myself for the good results with a 6 inch meat ball sub from Subway : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 Pierre, Thanks for sharing. You (and your kidneys!) are such a fighter (s) ... your indomitable spirit and positive attitude is such an inspiration to me, as to all of us here in this group I'm sure. You're in my prayers, all the best and take care... grace ----Original Message Follows---- Reply-To: iga-nephropathy To: <iga-nephropathy > Subject: Another month Date: Wed, 18 Sep 2002 19:48:53 -0400 Here's my situation report. Well, it looks like I've bought myself at least another month before dialysis. My latest lab results show some improvement in serum creatinine. So, still right on the threshold of end-stage, but, my kidneys are hanging on to about 15% kidney function. Remarkably, potassium, sodium, calcium, hemoglobin, phosphorus, etc. all look good, and blood pressure too. No changes in diet needed. The only thing that doesn't look as good is the 5 grams/day of proteinuria. I've never had heavy proteinuria during the past 25 years, until just these past few months. Apparently, in my case, it's simply due to the damage in there, and it probably won't improve. Some of you may recall it was 5 grams last month too. No chance of being on prednisone for it -- it wouldn't make any difference, since I'm so close to needing dialysis. I have a bit of ankle swelling, but my neph thinks it's a side effect of the felodipine I'm taking for blood pressure, rather than fluid retention. Hold the congratulations though. The situation at this stage can change rapidly. If it does, I'm ready. They tell me I have a fistula of Olympic proportions! It is a bit snakey however. I go for an ultrasound of it next week, so they will have a clearer picture as to where to insert the needles when I start dialysis. By the way, I've been told I can do just about anything with my fistula arm short of inflicting a direct trauma on it, and, unfortunately for me, sleeping on that arm. Other than that, I can lift anything, or do anything. And only six months after the surgery, the incision scar is nearly invisible. Pierre It was almost suppertime by the time I got out of there, so, I rewarded myself for the good results with a 6 inch meat ball sub from Subway : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 Thanks Grace. That's nice to read. I post these updates because I know some in the group are following behind at various stages, and it's nice to know what to expect and how it all works. Hopefully, before most of you reach that point, they will have found the cure for IgAN. Pierre Another month > Date: Wed, 18 Sep 2002 19:48:53 -0400 > > Here's my situation report. > > Well, it looks like I've bought myself at least another month before > dialysis. My latest lab results show some improvement in serum creatinine. > So, still right on the threshold of end-stage, but, my kidneys are hanging > on to about 15% kidney function. Remarkably, potassium, sodium, calcium, > hemoglobin, phosphorus, etc. all look good, and blood pressure too. No > changes in diet needed. The only thing that doesn't look as good is the 5 > grams/day of proteinuria. I've never had heavy proteinuria during the past > 25 years, until just these past few months. Apparently, in my case, it's > simply due to the damage in there, and it probably won't improve. Some of > you may recall it was 5 grams last month too. No chance of being on > prednisone for it -- it wouldn't make any difference, since I'm so close to > needing dialysis. I have a bit of ankle swelling, but my neph thinks it's a > side effect of the felodipine I'm taking for blood pressure, rather than > fluid retention. > > Hold the congratulations though. The situation at this stage can change > rapidly. If it does, I'm ready. They tell me I have a fistula of Olympic > proportions! It is a bit snakey however. I go for an ultrasound of it next > week, so they will have a clearer picture as to where to insert the needles > when I start dialysis. By the way, I've been told I can do just about > anything with my fistula arm short of inflicting a direct trauma on it, and, > unfortunately for me, sleeping on that arm. Other than that, I can lift > anything, or do anything. And only six months after the surgery, the > incision scar is nearly invisible. > > Pierre > It was almost suppertime by the time I got out of there, so, I rewarded > myself for the good results with a 6 inch meat ball sub from Subway : ) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2002 Report Share Posted September 21, 2002 Hi Pierre, I am glad to know that you will be off dialysis at least for another month. I have a friend, who reached renal failure because of a renal obstructive desease, who remained at 10 % renal function for 9 months. Hope this encourages you. Yours, Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2002 Report Share Posted September 21, 2002 > Thanks Rita. > > On a day when I feel good, yes, that's very encouraging. However, I think if > they left me off dialysis at 10% for 9 months, I'd have to kill my doctor! > : ) > Your message made me laugh!!. My friend must be a saint because he did not kill his doctor. Anyway, just in case this happens to you, please do control yourself and do not become a murder. We do need you here in the group, and I am not so sure how you will moderate this group from prison. Good luck, Rita > Pierre > > Re: Another month > > > > > > > > Hi Pierre, > > > > I am glad to know that you will be off dialysis at least for another > > month. I have a friend, who reached renal failure because of a renal > > obstructive desease, who remained at 10 % renal function for 9 > > months. Hope this encourages you. > > Yours, > > Rita > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2002 Report Share Posted September 22, 2002 > > > Thanks Rita. > > > > > > On a day when I feel good, yes, that's very encouraging. However, > > I think if > > > they left me off dialysis at 10% for 9 months, I'd have to kill my > > doctor! > > > : ) > > > > > > Re: Another month > > > Your message made me laugh!!. My friend must be a saint because he > > did not kill his doctor. Anyway, just in case this happens to you, > > please do control yourself and do not become a murder. We do need > > you here in the group, and I am not so sure how you will moderate > > this group from prison. > > Good luck, > > Rita > > > > > Pierre > > Well, as long as it's in the Canadian prison system, I'm sure I would have > Internet access, as well as a jacuzzi, 500 channels on satellite TV, tennis, > golf, weekend barbecues, etc. All the comforts I don't have at home : ) > Pierre Oh, that´s very interesting!!. You have convinced me! I will kill my neph in my next appointment with 50 % renal function. I can not wait until I reach 10 %. Please let me know if you decide to take the dive also. Rita Quote Link to comment Share on other sites More sharing options...
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