Guest guest Posted May 15, 2002 Report Share Posted May 15, 2002 Well Pierre, it seems congratulations are in order. Staying the same, in your case anyway, is a very good thing. Maybe next time your number will be even better!! Hopefully you won't need that fistula for a long time yet. Curtis in Ontario, Canada Pierre's update Had my monthly follow-up at the Progressive Renal Insufficiency Clinic today (that's what they call it, PRI clinic for short). Things are pretty stable. All my numbers are pretty much the same. Phosphorus is low, so, my dietary restrictions regarding phosphorus have actually been relaxed. That was a pleasant surprise. I've been told to eat more cheese and dairy products, small amounts of legumes and nuts, have a beer, etc. For example, I had been restricted to a single ounce of cheese (not processed of course) 3 x per week. Now I can have an ounce every day, plus more milk in my coffee and tea. Cheese counts as protein though, so it's still limited to some extent, and legumes are still limited because everything that has lots of protein tends to have a lot of potassium and phosphorus. Therefore, I still have to watch the limits in terms of protein and potassium. But, I'm not complaining! My condition took a turn for the worse last May 01 to Jan 02, but since then, it has become absolutely stable - so much so that I'm back on 3 month follow-up instead of monthly. The only negative about the whole appointment is that she upped the dosage of one of my BP meds (felodipine). My systolic was 140, and they like to see it at under 130. Now, my lab numbers aren't better (except for the phosphorus) - just not worse, but at this stage, that is very good news indeed. For the newer members who haven't been following my story, I've had the IgAN for almost 25 years. Only started on the " renal diet " last Fall, once my serum creatinine had passed 300 umol/L. I absolutely do not self-treat in any way. Only do what they tell me. Over the years, my conditon has gone through " dead slow " periods many times, when things change very little for months and even years at a time. My nephrologist is a little surprised (but happy) that it is so stable at this point. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2002 Report Share Posted May 15, 2002 Thanks Curtis. I don't want to be too optimistic, in case things might change. You never know with these things! I forgot to mention about the fistula. This was the first time anyone looked at it since the surgery a month ago. It's looking good too. The incision is healing very well, and the vein is developing nicely. At this point, I have no restrictions at all, except to not sleep on my left side in case pressure on the arm might cause it to clot, and not lifting heavy objects. Things like grocery bags are fine. The only restrictions that always remain are to not let ANYONE check my BP in that arm, or draw blood from it, and I have to check to make sure the buzz is still there once a day. If I ever don't feel it, I have to call the clinic or dialysis centre right away, depending on what time of day it is. This is because if they catch it in time, they have a good chance of declotting it. Pierre Pierre's update > > > Had my monthly follow-up at the Progressive Renal Insufficiency Clinic today > (that's what they call it, PRI clinic for short). Things are pretty stable. > All my numbers are pretty much the same. Phosphorus is low, so, my dietary > restrictions regarding phosphorus have actually been relaxed. That was a > pleasant surprise. I've been told to eat more cheese and dairy products, > small amounts of legumes and nuts, have a beer, etc. For example, I had been > restricted to a single ounce of cheese (not processed of course) 3 x per > week. Now I can have an ounce every day, plus more milk in my coffee and > tea. Cheese counts as protein though, so it's still limited to some extent, > and legumes are still limited because everything that has lots of protein > tends to have a lot of potassium and phosphorus. Therefore, I still have to > watch the limits in terms of protein and potassium. But, I'm not > complaining! My condition took a turn for the worse last May 01 to Jan 02, > but since then, it has become absolutely stable - so much so that I'm back > on 3 month follow-up instead of monthly. The only negative about the whole > appointment is that she upped the dosage of one of my BP meds (felodipine). > My systolic was 140, and they like to see it at under 130. Now, my lab > numbers aren't better (except for the phosphorus) - just not worse, but at > this stage, that is very good news indeed. > > For the newer members who haven't been following my story, I've had the IgAN > for almost 25 years. Only started on the " renal diet " last Fall, once my > serum creatinine had passed 300 umol/L. I absolutely do not self-treat in > any way. Only do what they tell me. Over the years, my conditon has gone > through " dead slow " periods many times, when things change very little for > months and even years at a time. My nephrologist is a little surprised (but > happy) that it is so stable at this point. > > Pierre > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2002 Report Share Posted May 15, 2002 Hi Pierre You don't know how good it is to hear this news, well done you I say. Will write more on your private address later. Suffering from shingles at the moment, so pretty incapacitated. Stress....who needs it huh!!! Love Pierre's update Had my monthly follow-up at the Progressive Renal Insufficiency Clinic today (that's what they call it, PRI clinic for short). Things are pretty stable. All my numbers are pretty much the same. Phosphorus is low, so, my dietary restrictions regarding phosphorus have actually been relaxed. That was a pleasant surprise. I've been told to eat more cheese and dairy products, small amounts of legumes and nuts, have a beer, etc. For example, I had been restricted to a single ounce of cheese (not processed of course) 3 x per week. Now I can have an ounce every day, plus more milk in my coffee and tea. Cheese counts as protein though, so it's still limited to some extent, and legumes are still limited because everything that has lots of protein tends to have a lot of potassium and phosphorus. Therefore, I still have to watch the limits in terms of protein and potassium. But, I'm not complaining! My condition took a turn for the worse last May 01 to Jan 02, but since then, it has become absolutely stable - so much so that I'm back on 3 month follow-up instead of monthly. The only negative about the whole appointment is that she upped the dosage of one of my BP meds (felodipine). My systolic was 140, and they like to see it at under 130. Now, my lab numbers aren't better (except for the phosphorus) - just not worse, but at this stage, that is very good news indeed. For the newer members who haven't been following my story, I've had the IgAN for almost 25 years. Only started on the " renal diet " last Fall, once my serum creatinine had passed 300 umol/L. I absolutely do not self-treat in any way. Only do what they tell me. Over the years, my conditon has gone through " dead slow " periods many times, when things change very little for months and even years at a time. My nephrologist is a little surprised (but happy) that it is so stable at this point. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2002 Report Share Posted May 16, 2002 That is so nice to hear, and I relly hope that you stay like this for a very long time. I also just got my labs back and everything its same which for me it's great, because that means that I will not need prendisone for now, last time I saw my doc. he was considering that. In iga-nephropathy@y..., " Pierre " <placha073@r...> wrote: > Had my monthly follow-up at the Progressive Renal Insufficiency Clinic today > (that's what they call it, PRI clinic for short). Things are pretty stable. > All my numbers are pretty much the same. Phosphorus is low, so, my dietary > restrictions regarding phosphorus have actually been relaxed. That was a > pleasant surprise. I've been told to eat more cheese and dairy products, > small amounts of legumes and nuts, have a beer, etc. For example, I had been > restricted to a single ounce of cheese (not processed of course) 3 x per > week. Now I can have an ounce every day, plus more milk in my coffee and > tea. Cheese counts as protein though, so it's still limited to some extent, > and legumes are still limited because everything that has lots of protein > tends to have a lot of potassium and phosphorus. Therefore, I still have to > watch the limits in terms of protein and potassium. But, I'm not > complaining! My condition took a turn for the worse last May 01 to Jan 02, > but since then, it has become absolutely stable - so much so that I'm back > on 3 month follow-up instead of monthly. The only negative about the whole > appointment is that she upped the dosage of one of my BP meds (felodipine). > My systolic was 140, and they like to see it at under 130. Now, my lab > numbers aren't better (except for the phosphorus) - just not worse, but at > this stage, that is very good news indeed. > > For the newer members who haven't been following my story, I've had the IgAN > for almost 25 years. Only started on the " renal diet " last Fall, once my > serum creatinine had passed 300 umol/L. I absolutely do not self- treat in > any way. Only do what they tell me. Over the years, my conditon has gone > through " dead slow " periods many times, when things change very little for > months and even years at a time. My nephrologist is a little surprised (but > happy) that it is so stable at this point. > > Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2002 Report Share Posted May 16, 2002 Good to hear your situation is stable too. Pierre Re: Pierre's update > That is so nice to hear, and I relly hope that you stay like this for > a very long time. > I also just got my labs back and everything its same which for me > it's great, because that means that I will not need prendisone for > now, last time I saw my doc. he was considering that. > > > > > > > In iga-nephropathy@y..., " Pierre " <placha073@r...> wrote: > > Had my monthly follow-up at the Progressive Renal Insufficiency > Clinic today > > (that's what they call it, PRI clinic for short). Things are pretty > stable. > > All my numbers are pretty much the same. Phosphorus is low, so, my > dietary > > restrictions regarding phosphorus have actually been relaxed. That > was a > > pleasant surprise. I've been told to eat more cheese and dairy > products, > > small amounts of legumes and nuts, have a beer, etc. For example, I > had been > > restricted to a single ounce of cheese (not processed of course) 3 > x per > > week. Now I can have an ounce every day, plus more milk in my > coffee and > > tea. Cheese counts as protein though, so it's still limited to some > extent, > > and legumes are still limited because everything that has lots of > protein > > tends to have a lot of potassium and phosphorus. Therefore, I still > have to > > watch the limits in terms of protein and potassium. But, I'm not > > complaining! My condition took a turn for the worse last May 01 to > Jan 02, > > but since then, it has become absolutely stable - so much so that > I'm back > > on 3 month follow-up instead of monthly. The only negative about > the whole > > appointment is that she upped the dosage of one of my BP meds > (felodipine). > > My systolic was 140, and they like to see it at under 130. Now, my > lab > > numbers aren't better (except for the phosphorus) - just not worse, > but at > > this stage, that is very good news indeed. > > > > For the newer members who haven't been following my story, I've had > the IgAN > > for almost 25 years. Only started on the " renal diet " last Fall, > once my > > serum creatinine had passed 300 umol/L. I absolutely do not self- > treat in > > any way. Only do what they tell me. Over the years, my conditon has > gone > > through " dead slow " periods many times, when things change very > little for > > months and even years at a time. My nephrologist is a little > surprised (but > > happy) that it is so stable at this point. > > > > Pierre > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2002 Report Share Posted May 16, 2002 Pierre, I am absolutely rejoicing in your great news, especially since I seem to be following pretty closely in your footsteps :-) Ok, here is the goal, let's both strive to last another 10 years before dialysis! Congratulations!!! in California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2002 Report Share Posted May 16, 2002 It is marvelous that your system is stable, i am happy for you, going to the Neph is like going for a sentencing ..you never know the outcome.But i know the feeling and i am very happy that your numbers are stable.MORE CHEESE PLEASE!!!. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2002 Report Share Posted May 16, 2002 Hi Pierre, So nice to hear that your condition is stable. Maybe your body is recognizing the wrong doing of IgaN, and make a right turn! Wonder why you have mild IgaN but so severe high BP. Do you have a family history of high BP? I know you exercise regularly so lifestyle couldn't contribute to this. Also in your personal story: you've noticed your serum cretinine is borderline high when you were 24. But at that time your kidney function is normal, why your cretinine is a little bit high? Have you ever checked blood in urine before your were 24? Enjoy cheese! April Quote Link to comment Share on other sites More sharing options...
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