Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 Hey Derrick, Those are really great results as far as the fact that you are holding steady on the creatinine. Do you still feel ok with a 6.4 serum creatinine? Derrick, I thought you were on Epogen. Do they just need to up your dose a bit? I have found that my levels have had to be altered from time to time. Even a small drop in hematocrit can really impact how fatigued you are. On the potassium that is really great news. Does that mean you can cheat a little bit on the diet and splurge on an orange or potato from time to time :-) Overall, I am really rejoicing that you are holding steady! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 Happy to hear fairly stable results Derrick, and perhaps more importantly, that you are feeling well. Looks like stopping that BP med did the trick as far as potassium goes. Pierre Latest Lab Results > , Pierre and the group, > I have just received my latest Lab > results. > > Serum Creatinine 0.57mmol/L (= 6.44mg/dL USA terms) > Haematocrit 0.34 > Haemoglobin 115g/L > Urea 36.3mmol/L > > Results 3 months ago > Serum Creatinine 0.52mmol/L (= 6.2mg/dL) > Haematocrit 0.36 > Haemoglobin 119g/L > Urea 39.1mmol/L > > I am still showing mild anemia, but the good news is my Potassium is > back in range at 4.7mmol/L. so I am quite pleased with these results. > It will be interesting to see how my neph views these next week. i am > still feeling comparitively well. > > Derrick > Sydney, Australia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 Hi Derrick, My Hematocrit went too high end of September, and I got cut off Epogen for 7 weeks. Boy do I feel it!!!! I told my Neph please never take me off that long again. I seem to be so sensitive now to drops in my hematocrit. It makes such a huge difference in how I feel, like you. I just started up again a week ago yesterday. Since it takes three weeks for red blood cells to mature, that means I will still be very tired on Thanksgiving next Thursday, and we are hosting 22 people here! On the potassium, I am jealous :-) The fatigue and potassium diets are the two things I most hate about having IgAN. Seems most of my favorite fruits and veggies are high in potassium and are therefore off limits. I am so pleased that your potassium went down when they changed your meds. Mine still tends to run high even with my diet, but not to the critical point that it was. I am glad the flavored sodas have helped. The other thing my renal dietitian recommended was hard candies (not chocolate due to phosphorus). Most days, I only feel like eating one meal, and not a large meal at that. I try to drink soda just to get some calories, but I don't even do very well at that. I drink maybe one or two a week is all. I need to try to get one down every day. I try so hard to eat a snack or fruit or something in the evenings, but it is hard to force when you have no appetite. I have also been noticing a mild nausea on many days as of late, which doesn't help matters in maintaining weight either. I did tell my doctor I was having trouble getting down more than one meal a day, so he is aware of it, and they weigh me each time I go in for my Epogen injections to make sure I am not losing too much weight. It is so good to have this support group who understands exactly what you are going through. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 Hi Derrick, From what I have seen, I would agree that Canada absolutely has it right as far as medical care goes. We are in complete agreement there! You are fortunate in that you get to give yourself injections. I have to drive to the doctors office to get mine! Diner is ready, so I guess I better go get some calories! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 , I am on Epogen (Eprex), and yes my neph did up the dose on my last visit but it is not enough, it will need to be increased again just slightly. Initially, the dose was too high and my haematocrit went up to 0.52. That is OK, I felt really good then, but it does make your blood more viscous, thus making your heart work harder. It was even apparant when I gave a sample of blood, took longer to flow through the needle. I have been feeling tired lately, lacking in energy when I walk, (different to the fatigue feeling which I sometimes put down as lack of motivation to do every day things. On the potassium scene, as Pierre said, the Atacand BP drug was the cause and replacing that has done the trick which is pleasing. It was replaced by Tenormen which has the side effect of giving me nightmares and vivid dreams each night, but I can cope with that. Another side effect is that it makes me feel tranquil which is good and as Marty Hall once said, 'it really does slow your heartbeat down.' My neph has never imposed a diet on me. I have asked him about diet because of what I have seen on this site, and he has said there is no need to restrict yourself at this stage. However, I do not feel like eating huge meals, nor do I have any yearning for specific foods. I have cut down on meat protein and just eat smaller portions generally. My problem, like yourself, is to maintain body weight and I am I using your suggestion of flavoured soda drinks which seems to work. Considering my situation and creatinine of 6.4mg/dL + mild anemea, I feel reasonably well and I am grateful for that. I suppose I am pleased that it has not changed dramatically since July. Sorry about the ramble, but it does help to talk about things. Derrick Sydney, Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 Hi Derrick. I was on Tenormin (atenolol) a long time ago. I didn't get the nightmares and vivid dreams, but his is considered an adverse effect that not everyone gets. If it becomes a problem for you, there are other similar beta blocker drugs out there that your doctor could prescribe which might not do that, for example, metoprolol or acebutolol. I had to stop taking the atenolol because it actually dropped my heart rate way too much (low 40's). My neph (the one I had until I started dialysis) also never said a word about diet, at any time. I saw the renal dietician as part of the overall nephrology system here, but, generally-speaking, nephrologists would rather see their patient well-nourished by the time they reach dialysis (when it becomes inevitable). The reason for this is that it is extremely easy to become malnourished by not eating enough protein when you have advanced renal failure, and this makes it that much harder to catch up on nutrition once you start dialysis. It also makes anemia more likely and more problematic. Pierre Re: Latest Lab Results > , > I am on Epogen (Eprex), and yes my neph did up the dose on my > last visit but it is not enough, it will need to be increased again > just slightly. Initially, the dose was too high and my haematocrit > went up to 0.52. That is OK, I felt really good then, but it does > make your blood more viscous, thus making your heart work harder. It > was even apparant when I gave a sample of blood, took longer to flow > through the needle. I have been feeling tired lately, lacking in > energy when I walk, (different to the fatigue feeling which I > sometimes put down as lack of motivation to do every day things. > On the potassium scene, as Pierre said, the Atacand BP drug was > the cause and replacing that has done the trick which is pleasing. It > was replaced by Tenormen which has the side effect of giving me > nightmares and vivid dreams each night, but I can cope with that. > Another side effect is that it makes me feel tranquil which is good > and as Marty Hall once said, 'it really does slow your heartbeat > down.' > My neph has never imposed a diet on me. I have asked him > about diet because of what I have seen on this site, and he has said > there is no need to restrict yourself at this stage. > However, I do not feel like eating huge meals, nor do I have any > yearning for specific foods. I have cut down on meat protein and just > eat smaller portions generally. My problem, like yourself, is to > maintain body weight and I am I using your suggestion of flavoured > soda drinks which seems to work. > Considering my situation and creatinine of 6.4mg/dL + mild > anemea, I feel reasonably well and I am grateful for that. I suppose > I am pleased that it has not changed dramatically since July. > Sorry about the ramble, but it does help to talk about things. > > Derrick > Sydney, Australia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 Pierre, Yes, the Atacand seems to have been the problem there. I was worried when my potassium went high, I could feel the effect on my heart beat, when I measured my BP. How are you going, Pierre. Now that you have finally arrived, how does it feel? I have heard of a man who lives quite close to me who has dialysis three times a week and works for the same organisation I work for. My next project is to go and see him and get some information on the next stage of my operation. It is something I have been stalling on for a while now but I must bite the bullet. I have also been doing some research on my family history. I have found reference to my grand fathers brother who died in 1915 of Brights disease and Uremea age 40. In those times, Bright's disease would include IGAN would it not? Derrick Sydney, Australia > Happy to hear fairly stable results Derrick, and perhaps more importantly, > that you are feeling well. Looks like stopping that BP med did the trick as > far as potassium goes. > > Pierre > > > Latest Lab Results > > > > , Pierre and the group, > > I have just received my latest Lab > > results. > > > > Serum Creatinine 0.57mmol/L (= 6.44mg/dL USA terms) > > Haematocrit 0.34 > > Haemoglobin 115g/L > > Urea 36.3mmol/L > > > > Results 3 months ago > > Serum Creatinine 0.52mmol/L (= 6.2mg/dL) > > Haematocrit 0.36 > > Haemoglobin 119g/L > > Urea 39.1mmol/L > > > > I am still showing mild anemia, but the good news is my Potassium is > > back in range at 4.7mmol/L. so I am quite pleased with these results. > > It will be interesting to see how my neph views these next week. i am > > still feeling comparitively well. > > > > Derrick > > Sydney, Australia > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 Pierre, I take your point, and I can see how easy it is to become malnourished. My happetite has dropped considerably and I did lose weight, but I have stabalised now and my weight has held steady over the past year. The tenormin has slowed my heartbeat down to a steady 62 and the nightmares I can handle so I will leave well enough alone. I become concerned when my BP is not under control. Derrick Sydney, Australia > Hi Derrick. > > I was on Tenormin (atenolol) a long time ago. I didn't get the nightmares > and vivid dreams, but his is considered an adverse effect that not everyone > gets. If it becomes a problem for you, there are other similar beta blocker > drugs out there that your doctor could prescribe which might not do that, > for example, metoprolol or acebutolol. I had to stop taking the atenolol > because it actually dropped my heart rate way too much (low 40's). My neph > (the one I had until I started dialysis) also never said a word about diet, > at any time. I saw the renal dietician as part of the overall nephrology > system here, but, generally-speaking, nephrologists would rather see their > patient well-nourished by the time they reach dialysis (when it becomes > inevitable). The reason for this is that it is extremely easy to become > malnourished by not eating enough protein when you have advanced renal > failure, and this makes it that much harder to catch up on nutrition once > you start dialysis. It also makes anemia more likely and more problematic. > > Pierre > > > Re: Latest Lab Results > > > > , > > I am on Epogen (Eprex), and yes my neph did up the dose on my > > last visit but it is not enough, it will need to be increased again > > just slightly. Initially, the dose was too high and my haematocrit > > went up to 0.52. That is OK, I felt really good then, but it does > > make your blood more viscous, thus making your heart work harder. It > > was even apparant when I gave a sample of blood, took longer to flow > > through the needle. I have been feeling tired lately, lacking in > > energy when I walk, (different to the fatigue feeling which I > > sometimes put down as lack of motivation to do every day things. > > On the potassium scene, as Pierre said, the Atacand BP drug was > > the cause and replacing that has done the trick which is pleasing. It > > was replaced by Tenormen which has the side effect of giving me > > nightmares and vivid dreams each night, but I can cope with that. > > Another side effect is that it makes me feel tranquil which is good > > and as Marty Hall once said, 'it really does slow your heartbeat > > down.' > > My neph has never imposed a diet on me. I have asked him > > about diet because of what I have seen on this site, and he has said > > there is no need to restrict yourself at this stage. > > However, I do not feel like eating huge meals, nor do I have any > > yearning for specific foods. I have cut down on meat protein and just > > eat smaller portions generally. My problem, like yourself, is to > > maintain body weight and I am I using your suggestion of flavoured > > soda drinks which seems to work. > > Considering my situation and creatinine of 6.4mg/dL + mild > > anemea, I feel reasonably well and I am grateful for that. I suppose > > I am pleased that it has not changed dramatically since July. > > Sorry about the ramble, but it does help to talk about things. > > > > Derrick > > Sydney, Australia > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 You know , nausea at your stage can actually be caused by not eating enough, especially protein. I went through that myself. My pre-dialysis renal diet called for so many " energy boosters " (which would include sodas), that I couldn't possibly eat or drink them all every single day. I just did the best I could. But they aren't called energy boosters for nothing. You really do need them. Pierre Re: Latest Lab Results > Hi Derrick, > > My Hematocrit went too high end of September, and I got cut off Epogen for 7 > weeks. Boy do I feel it!!!! I told my Neph please never take me off that > long again. I seem to be so sensitive now to drops in my hematocrit. It > makes such a huge difference in how I feel, like you. I just started up > again a week ago yesterday. Since it takes three weeks for red blood cells > to mature, that means I will still be very tired on Thanksgiving next > Thursday, and we are hosting 22 people here! > > On the potassium, I am jealous :-) The fatigue and potassium diets are the > two things I most hate about having IgAN. Seems most of my favorite fruits > and veggies are high in potassium and are therefore off limits. I am so > pleased that your potassium went down when they changed your meds. Mine > still tends to run high even with my diet, but not to the critical point that > it was. > > I am glad the flavored sodas have helped. The other thing my renal dietitian > recommended was hard candies (not chocolate due to phosphorus). Most days, I > only feel like eating one meal, and not a large meal at that. I try to drink > soda just to get some calories, but I don't even do very well at that. I > drink maybe one or two a week is all. I need to try to get one down every > day. I try so hard to eat a snack or fruit or something in the evenings, but > it is hard to force when you have no appetite. I have also been noticing a > mild nausea on many days as of late, which doesn't help matters in > maintaining weight either. I did tell my doctor I was having trouble getting > down more than one meal a day, so he is aware of it, and they weigh me each > time I go in for my Epogen injections to make sure I am not losing too much > weight. > > It is so good to have this support group who understands exactly what you are > going through. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 , That's an interesting point, I give myself the Eprex injection and my neph never weighs me. He does know I keep an eye on my weight though. It is interesting comparing notes around the world and differing levels of care. I would judge that Canada has an excellent National Health Care Service judging from what Pierre has said. Derrick Sydney Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 Bright's disease could have been just about any glomerular-type kidney disease, IgAN among them, and uremia was just another word for the symptoms of what we call end-stage renal failure nowadays. In 1915, if you had uremia, you just died. There were no treatments, and this pretty much was the situation for most people with kidney failure until the late 1960's, when practical hemodialysis started being more available. That's not very long ago when you stop to think about it. I mean, I was already a teenage by that time. Practical PD didn't come along until about a decade later. I'm feeling better Derrick, little by little. Last night was the best dialysis session I've had. It took a while to get the right things in place, like adjust the dialysis prescription, etc. So far, the nephrologist has changed the potassium level in my dialysate, dramatically increased my calcitriol prescription, added IV iron which is given to me each dialysis treatment (just inserted into a line), changed the one BP med I remained on to another one. We've also figured out by trial and error that taking enough fluid off me to achieve a dry weight of 56 kg is too much - causing cramps every time, but 56.5 kg is Ok. I still void almost normally, and so far, I don't need to watch my potassium intake, nor my fluid intake. I'm glad my nephrologist started me when she did. Now, I've got over a month and a half under my belt, and I'm no longer a newbie at the dialysis centre. One thing that has helped tremendously is that I have had no problems at all with my fistula. It has worked well from day one. A few times the tip of the needle went through the other side, but that happens, and it's another fear of mine that turned out not to be a big deal at all. A good fistula means that I'm already running at flows that are higher than that of people who dialyze via a catheter - which means better cleaning of the blood in the same period of time. There are always little problems, but you learn to take them in stride. And I'm actually getting used to the 3 evenings per week schedule. In the waiting room of the dialysis centre, the walls are decorated with pictures and descriptions of dialysis as it developed over the years. When I look at those, it's easy to remind myself that I'm glad I'm doing this now rather than 20-30 years ago. And there are better dialysis machines coming, ones with which it will be necessary only to dialyse for 2 hours (half the normal time). I'm getting to like the chit chat with the nurses too. I would find it lonely dialyzing by myself at home. There's a guy here in Ottawa who is reportedly one of the longest-lasting people on hemodialysis in the world, and the longest in Canada - 33 years continuously, and still going strong. I'm planning to go after that record, unless I can get a transplant first : ) Pierre Re: Latest Lab Results > Pierre, > Yes, the Atacand seems to have been the problem there. I was > worried when my potassium went high, I could feel the effect on my > heart beat, when I measured my BP. > How are you going, Pierre. Now that you have finally arrived, > how does it feel? I have heard of a man who lives quite close to me > who has dialysis three times a week and works for the same > organisation I work for. My next project is to go and see him and get > some information on the next stage of my operation. It is something I > have been stalling on for a while now but I must bite the bullet. > I have also been doing some research on my family history. I > have found reference to my grand fathers brother who died in 1915 of > Brights disease and Uremea age 40. In those times, Bright's disease > would include IGAN would it not? > > Derrick > Sydney, Australia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Pierre, Thanks for that informative update, you sound to have it well under control and if you can do it then I can. Canada seems to have an excellent Health Care System, I thought Australia was good but it would appear that Canada is the best. Guess we're lucky eh? I am expecting my neph to make arrangements for a fistula when I see him next week and judging by your experience, the sooner the better. I think I will be disappointed if he delays it now though Christmas is on the horizon and it is our summer holiday time coming up. Yes, 1960 is not all that long ago for me, I remember it well, we are lucky to be lumbered with this problem today rather than 40 years ago, the mind boggles when you think about it in that light. I often used to think it would be good to see into the future, but having had this experience with IGAN, I am not so sure I could really handle it. We have been given the priveledge of looking into the future with IGAN in that we know that some time in the distant future we will probably go ESRD and most of us worry about it perhaps subconciously until it happens. What would be be like if we knew our life was to end in 4 weeks? Interesting thought. Derrick Sydney Australia > Bright's disease could have been just about any glomerular-type kidney > disease, IgAN among them, and uremia was just another word for the symptoms > of what we call end-stage renal failure nowadays. In 1915, if you had > uremia, you just died. There were no treatments, and this pretty much was > the situation for most people with kidney failure until the late 1960's, > when practical hemodialysis started being more available. That's not very > long ago when you stop to think about it. I mean, I was already a teenage by > that time. Practical PD didn't come along until about a decade later. > > I'm feeling better Derrick, little by little. Last night was the best > dialysis session I've had. It took a while to get the right things in place, > like adjust the dialysis prescription, etc. So far, the nephrologist has > changed the potassium level in my dialysate, dramatically increased my > calcitriol prescription, added IV iron which is given to me each dialysis > treatment (just inserted into a line), changed the one BP med I remained on > to another one. We've also figured out by trial and error that taking enough > fluid off me to achieve a dry weight of 56 kg is too much - causing cramps > every time, but 56.5 kg is Ok. I still void almost normally, and so far, I > don't need to watch my potassium intake, nor my fluid intake. I'm glad my > nephrologist started me when she did. Now, I've got over a month and a half > under my belt, and I'm no longer a newbie at the dialysis centre. One thing > that has helped tremendously is that I have had no problems at all with my > fistula. It has worked well from day one. A few times the tip of the needle > went through the other side, but that happens, and it's another fear of mine > that turned out not to be a big deal at all. A good fistula means that I'm > already running at flows that are higher than that of people who dialyze via > a catheter - which means better cleaning of the blood in the same period of > time. > > There are always little problems, but you learn to take them in stride. And > I'm actually getting used to the 3 evenings per week schedule. In the > waiting room of the dialysis centre, the walls are decorated with pictures > and descriptions of dialysis as it developed over the years. When I look at > those, it's easy to remind myself that I'm glad I'm doing this now rather > than 20-30 years ago. And there are better dialysis machines coming, ones > with which it will be necessary only to dialyse for 2 hours (half the normal > time). I'm getting to like the chit chat with the nurses too. I would find > it lonely dialyzing by myself at home. > > There's a guy here in Ottawa who is reportedly one of the longest- lasting > people on hemodialysis in the world, and the longest in Canada - 33 years > continuously, and still going strong. I'm planning to go after that record, > unless I can get a transplant first : ) > > Pierre > > Re: Latest Lab Results > > > > Pierre, > > Yes, the Atacand seems to have been the problem there. I was > > worried when my potassium went high, I could feel the effect on my > > heart beat, when I measured my BP. > > How are you going, Pierre. Now that you have finally arrived, > > how does it feel? I have heard of a man who lives quite close to me > > who has dialysis three times a week and works for the same > > organisation I work for. My next project is to go and see him and get > > some information on the next stage of my operation. It is something I > > have been stalling on for a while now but I must bite the bullet. > > I have also been doing some research on my family history. I > > have found reference to my grand fathers brother who died in 1915 of > > Brights disease and Uremea age 40. In those times, Bright's disease > > would include IGAN would it not? > > > > Derrick > > Sydney, Australia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2002 Report Share Posted November 25, 2002 Pierre, I find it interesting that you said to dialyze at home would be lonely. I'm sure there is a lot to be said for the personal interaction with not only medical personnel, but other patients experiencing the same thing helps with the adjustment. If you continue to see the same nurses and technicians, you should develop a rapport with them. It's like the old lab I used to use, they knew me by name, talked to me on a personal level and I really liked it. The lab I use now, the girls checking you in don't even smile and the lab technicians know me but they are all business and there is no personal or even polite chatter and I would switch but the lab stays open until 6:00pm and is 5 minutes from my house, so I put up with it. My guess is with your personality and thirst for information, you're taking in so much new material that you're soaking it up like a sponge! I have been into the web-site to read your dialysis experiences and I find it very informative and plan on keeping up with your progress. Good Luck. Connie, USA Re: Latest Lab Results Pierre, Thanks for that informative update, you sound to have it well under control and if you can do it then I can. Canada seems to have an excellent Health Care System, I thought Australia was good but it would appear that Canada is the best. Guess we're lucky eh? I am expecting my neph to make arrangements for a fistula when I see him next week and judging by your experience, the sooner the better. I think I will be disappointed if he delays it now though Christmas is on the horizon and it is our summer holiday time coming up. Yes, 1960 is not all that long ago for me, I remember it well, we are lucky to be lumbered with this problem today rather than 40 years ago, the mind boggles when you think about it in that light. I often used to think it would be good to see into the future, but having had this experience with IGAN, I am not so sure I could really handle it. We have been given the priveledge of looking into the future with IGAN in that we know that some time in the distant future we will probably go ESRD and most of us worry about it perhaps subconciously until it happens. What would be be like if we knew our life was to end in 4 weeks? Interesting thought. Derrick Sydney Australia > Bright's disease could have been just about any glomerular-type kidney > disease, IgAN among them, and uremia was just another word for the symptoms > of what we call end-stage renal failure nowadays. In 1915, if you had > uremia, you just died. There were no treatments, and this pretty much was > the situation for most people with kidney failure until the late 1960's, > when practical hemodialysis started being more available. That's not very > long ago when you stop to think about it. I mean, I was already a teenage by > that time. Practical PD didn't come along until about a decade later. > > I'm feeling better Derrick, little by little. Last night was the best > dialysis session I've had. It took a while to get the right things in place, > like adjust the dialysis prescription, etc. So far, the nephrologist has > changed the potassium level in my dialysate, dramatically increased my > calcitriol prescription, added IV iron which is given to me each dialysis > treatment (just inserted into a line), changed the one BP med I remained on > to another one. We've also figured out by trial and error that taking enough > fluid off me to achieve a dry weight of 56 kg is too much - causing cramps > every time, but 56.5 kg is Ok. I still void almost normally, and so far, I > don't need to watch my potassium intake, nor my fluid intake. I'm glad my > nephrologist started me when she did. Now, I've got over a month and a half > under my belt, and I'm no longer a newbie at the dialysis centre. One thing > that has helped tremendously is that I have had no problems at all with my > fistula. It has worked well from day one. A few times the tip of the needle > went through the other side, but that happens, and it's another fear of mine > that turned out not to be a big deal at all. A good fistula means that I'm > already running at flows that are higher than that of people who dialyze via > a catheter - which means better cleaning of the blood in the same period of > time. > > There are always little problems, but you learn to take them in stride. And > I'm actually getting used to the 3 evenings per week schedule. In the > waiting room of the dialysis centre, the walls are decorated with pictures > and descriptions of dialysis as it developed over the years. When I look at > those, it's easy to remind myself that I'm glad I'm doing this now rather > than 20-30 years ago. And there are better dialysis machines coming, ones > with which it will be necessary only to dialyse for 2 hours (half the normal > time). I'm getting to like the chit chat with the nurses too. I would find > it lonely dialyzing by myself at home. > > There's a guy here in Ottawa who is reportedly one of the longest- lasting > people on hemodialysis in the world, and the longest in Canada - 33 years > continuously, and still going strong. I'm planning to go after that record, > unless I can get a transplant first : ) > > Pierre > > Re: Latest Lab Results > > > > Pierre, > > Yes, the Atacand seems to have been the problem there. I was > > worried when my potassium went high, I could feel the effect on my > > heart beat, when I measured my BP. > > How are you going, Pierre. Now that you have finally arrived, > > how does it feel? I have heard of a man who lives quite close to me > > who has dialysis three times a week and works for the same > > organisation I work for. My next project is to go and see him and get > > some information on the next stage of my operation. It is something I > > have been stalling on for a while now but I must bite the bullet. > > I have also been doing some research on my family history. I > > have found reference to my grand fathers brother who died in 1915 of > > Brights disease and Uremea age 40. In those times, Bright's disease > > would include IGAN would it not? > > > > Derrick > > Sydney, Australia > > To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ Visit our companion website at www.igan.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2002 Report Share Posted November 25, 2002 Hi Connie. Of course, others might feel differently, but I do enjoy the interaction with the nurses and other patients. In one evening, I might have 3 or 4 different nurses attending to me. Once seated for dialysis, you can't really talk to other patients, because of the noise level (think of 30 dishwashers running in the same room) and the layout (the machines themselves are between each patient, and the ones across are too far), but I do see the same ones in the waiting room every night, and people wave or nod hello as I walk through the room. It's not my idea of a fun evening, but if I have to do it, I would rather be somewhere where there's a lot of activity, rather than just sitting at home. It's amazing how quickly you can develop a rapport with people in a situation like that. The other thing is that, when there are little problems, the nurses are right there to take care of it. There's a good mix of very experienced and newer ones, older and younger ones, and honestly, I don't know if they pick them for their personality, but I've never encountered friendlier nurses, both male and female. They really do help to make a rather undesirable situation as pleasant as possible. Pierre RE: Latest Lab Results > Pierre, I find it interesting that you said to dialyze at home would be > lonely. I'm sure there is a lot to be said for the personal interaction > with not only medical personnel, but other patients experiencing the same > thing helps with the adjustment. If you continue to see the same nurses and > technicians, you should develop a rapport with them. It's like the old lab > I used to use, they knew me by name, talked to me on a personal level and I > really liked it. The lab I use now, the girls checking you in don't even > smile and the lab technicians know me but they are all business and there is > no personal or even polite chatter and I would switch but the lab stays open > until 6:00pm and is 5 minutes from my house, so I put up with it. > > My guess is with your personality and thirst for information, you're taking > in so much new material that you're soaking it up like a sponge! I have > been into the web-site to read your dialysis experiences and I find it very > informative and plan on keeping up with your progress. Good Luck. Connie, > USA > Quote Link to comment Share on other sites More sharing options...
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