Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Mikki - You look awesome as usual. Just amazing! Thanks for bringing us up to date and congrats on reaching your goal. Jeanne in WI Age 39 Open RNY - 5/21/02 Dr. Chua 5'8 " - 314/221/150-175 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Sounds like things are fairly normal for you now, Debbie. Thanks for letting us know. That's why they tell us to eat slowly, so we'll stop before we put in that " one too many " bit, but I'm bad at it. Just can't seem to slow down that much. Take care. Jeanne in WI Age 39 Open RNY - 5/21/02 Dr. Chua 5'7 " - 314/218/150-175 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Hey Deb waves glad you are doing OK update > Well, I am way way behind on emails. I had my swallow study done on thurs, and tada, no leak. The drain was left in just incase there was a pin-hole leak and at least the drain would pick up the drainage and I wouldn't get sick. > > I had a little scare because at one point on fri, the drainage increased, and looked different. Emptied that, about 10cc's more, and looked like flecks of something. So, my protein drinks looked like there were shamrock shakes from Micky D's. And green baked pot, was cool. > > Atlas no food in the drain, it came out today, And boy oh boy am I sore. I think he pulled out my pouch........ > > I'm doing ok with food, although I did after eating the baked pot, 2 different times, must have taken that one bite too much, and felt like I was going to hurl. The one time was during a show choir performance. Glad it went away. I am not hungry. I am getting shakes in. The cookies and Creme is wonderful. > > I find I have to remind myself to eat. I'm getting the protein, and I still have the g-tube and can supplement with that. > > I talked today with my surgeon about the protein drinks. He knows I am on them. I took him the label from the PS 100. I think that some of them just don't know what's out there. They don't want you to do the meal replacement. And I know my surgeon after being impressed with the label wanted to know if it was expensive. My reply was no not really and it's less expensive then high blood pressure pills. > > Ok, rambling here. I'm so behind. > > Ciao, > > Deb Sellman > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 Ginny, That is a lot of news to absorb.. I hope you get some definitive answers soon. I find it hard to believe a Dr. you've been seeing for years would simply assume you aren't a patient because you haven't been in to see her. Obviously, no one asked for your records or anything so she can't have thought you were seeing another Dr... Oh well, add one more reason to my Dr. boycotting! Glad to see you are back with us. Hugs, Jo PS - Did I ever tell you that my sister's name is Ginny?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 > Donna...lol...it is not going to snow here at all this winter...lmao ok...well not until the end of November...which gives us this week and next to get a move on...it's only a day trip... We live in New England...it snows in the spring and summer..I doubt it will wait til the end of november LOL..heck it could snow while we are on our way to see Tricia and Barbara and be 80 when we return home LOL!! Love ya too Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 Hi Elisabeth, I am sorry you had to back down on your Methotrexate dose. It must be hard trying to balance treatment for your Stills and your kidneys at the same time. I hope the nephrotic syndrome symptoms get better soon. In a message dated 3/18/2005 6:55:52 A.M. Pacific Standard Time, scalanosh@... writes: Hi everyone, Just wanted to give you some news, I had to go back down to the low dose Methotrexate because the higher dose was causing problems with my kidneys. I haven't had labwork yet, but started getting that nephrotic syndrome fun stuff: swelling, fatigue, just feeling vaguely lousy- been there, done that- so I can regognize the signs. Hopefully going to the lower dose will help things! Best wishes, and everyone hang in there- I know some of you have had some difficult times lately, and I'm thinking of you... -Elisabeth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 Hi Elisabeth, I am so glad you feel better today! Thanks for your kind comments about Jim. We just got word that they are having to call off the search for the night but search and rescue will be back with the dogs tomorrow. I think it will be a very long night. In a message dated 3/18/2005 5:49:07 P.M. Pacific Standard Time, scalanosh@... writes: I feel much better today, and thank you for your well wishes. I'm glad they found Jim's car. Please keep us posted, and hang in there- this is such a difficult situation... My thoughts are with you and also with Jim's family... Best wishes and do hang in there, - Elisabeth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 Elisabeth, Hang in there. I hope they are able to bring things under control for you soon. I know nephrotic syndrome well too, it's not a fun place to be. Sending you some strength to get you over this large pothole in the road. Amy G. Update Hi everyone, Just wanted to give you some news, I had to go back down to the low dose Methotrexate because the higher dose was causing problems with my kidneys. I haven't had labwork yet, but started getting that nephrotic syndrome fun stuff: swelling, fatigue, just feeling vaguely lousy- been there, done that- so I can regognize the signs. Hopefully going to the lower dose will help things! Best wishes, and everyone hang in there- I know some of you have had some difficult times lately, and I'm thinking of you... -Elisabeth IgAn Still's disease (rare type of arthritis characterized by a rash that comes and goes, daily fever that 's cyclical and arthritis- someone asked about this I think) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 Dear Amy, Thank you so much for your well wishes. It's going to be fine! I feel better already today- took a walk, took a nap- the perfect recipe to feel better- LOL! Now let's get you to feeling better from the scan. I hope this all resolves very soon... Best wishes, -Elisabeth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 Dear , It is a real balancing act between the kidneys and the Still's. Too bad I don't have just one or the other, but I'm just popular enough to have both, I guess! I feel much better today, and thank you for your well wishes. I'm glad they found Jim's car. Please keep us posted, and hang in there- this is such a difficult situation... My thoughts are with you and also with Jim's family... Best wishes and do hang in there, - Elisabeth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2005 Report Share Posted April 3, 2005 I'm glad you got that second opinion! I can almost feel you relaxing as I read your post. The IgAN site is pretty comprehensive. You might want to consider exploring the " Links " section and " News and Announcements " . Reviewing normal renal function is useful (groan, that stuff from highschool bio). There's also a great article on IgAN on emedicine.com (requires registration, but registration's free). The article is a little dense reading, but worth the time if you are so inclined. Cy Update > > > I want to say thank you for being here as a support group and to all > who answered me. I have enjoyed reading the messages here, and > found them educating on the IgaN. My son, Blake was diagnosed with > this in March of this year, just a few days before his 15th > birthday. . Our first doctor visit with a nephrologist was I a > parent's nightmare. The nephrologists started talking about > dialysis. We have decided to obtain a second opinion from a > nephrologist in Houston, about 2 hours from out home. It gave us > some upbeat news that not all cases progress to the stage of needing > dialysis or transplant. As of now Blake's kidney are still at full > function. I'm excited about that. He has placed Blake on an ACE > inhibitor. I'm going to have to get use to all this > terminology. I've read all the information I could on this IgAN > (also on your sister site). Although there is a lot to absorb, I > still am a little bet confused. I gather in time I will learn more > as this goes on. I'm gathering that there is no way to tell if this > will be aggressive type or not. Is there is any information other > than your sister site that I should as a parent be aware of? Again > thanks to all of you, you guys will always be remembered in our > prayers. > > > > > > > > > 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 7, 2005 Report Share Posted April 7, 2005 Hi First of all, thanks for your nice words of encouragement. Second, your cousin sounds like a wonderful young lady -- certainly not like someone who should die rather than go on dialysis. My goodness, I know plenty of young men and women on dialysis. They take it all in stride. You know, I kept a kind of blog of my first year on dialysis, long before the recent popularity of the word " blogging " since the US presidential election. Do you think it might help if she could read it? It's in the old IgAN Cafe I ran in parallel with this group until last year. The IgAN Cafe is actually still there, just not being actively used or linked to from www.igan.ca . I think my story represents the experience of the majority of people who go on dialysis. Yes, some people do have difficulties, especially at first, but not everyone does... and what difficulties there are can usually be overcome when given the proper attention. I know this because I make it a point to participate in every kidney support group the social workers run here throughout the year. I talk to people before they are on dialysis, after they start, and I see them later on. I hate to have to say this, but some of the for profit dialysis centres are only in it for the money, and they don't seem to take care of their patients very well sometimes - not all, but there are a few bad eggs in the system. Often, that's where the horror stories come from. Let me know if you want to access my log. About the low sodium... In my experience, all you have to do is to stop adding salt at the table, and stop using anything that is a prepared, manufactured food. All of those things have tons more salt than is needed. If you prepare everything from scratch (not including things like basic staples, such as dried pasta, rice, etc.), you don't add salt, and, you avoid eating salty foods like chips, popcorn (unless you pop your own), olives, pickles, prepared or cured meats, etc., you should be well within your sodium limit, and you can still use regular salted butter or margarine, and you can eat regular bread. Instead of regular cereals, for example, I like regular cream of wheat (not the instant kind). It says to add a pinch of salt when cooking it, but, I can't see how it makes any difference whatsoever. Lots of things are like that. Trust me, your taste buds will adjust to the point that you won't need salt. For some things, there is a health food store item which contains no sodium or potassium salt at all, but which, because it is a special yeast, actually tastes a little salty. It doesn't taste good on everything, but I like it on things like potatoes, eggs, some pastas and other things I can't think of at the moment. It's called Vegit. There's only one brand. It's perfectly fine for anyone with even complete kidney failure. I've even used it on popcorn. Pierre update > > Well I went to see a dietician this week. It was very interesting, very > interesting indeed. I had no idea how much salt is in everything we eat. > As my husband said it's much easier to find things without sugar than > without salt. She has asked that I reduce my protein to 8 ozs a day > including dairy. Therefore, after milk with my cereal its really 6 oz, > which is not very big as I found out. Although I am not near ESRD, the > docs wanted me to have a consult and the things they really want me to > limit is salt and protein. So the protein is a little easier to keep a > handle of. The salt I am allowed is 2000-3000mg a day...this is nothing > since a bowl of tomato soup as about 2000mg of sodium. Wow, did I ever > get a lesson this week. So now I need to begin (slowly) to change my > diet, low salt, low protein and keep eye on potassium and phosphorous > and my husband is diabetic, so no sugar...I think I am glad summer is > just around the corner and we can pile up on raw fruits and veggies. I > guess I am going to learn how to can and freeze them this year. :-) > > > > I eat out a lot because I travel for business and that is going to make > it very difficult to eat low salt. I tried today at lunch and what can > you have other than salad? And fast foods or processed foods are so full > of sodium to add flavour...it's kind of overwhelming, but I am sure I > will get the hang of it. I did learn that my soy milk has only 20mg of > salt compared to skim milk of 130mg...so anywhere I can start making > better choices I suppose. > > > > Otherwise all is well over my world for now. My blood work came back > unchanged from 6 months ago, except for a slight rise in protein in my > urine, everything else was consistent. So that was good news. My BP is > still a little higher than the docs prefer, so we are monitoring that a > little more closely. > > > > Pierre, I am so encouraged by all the progress you are making. You are > an inspiration. I wish my cousin would choose dialysis, but she is not > wanting to at this point. She is 21 has CF and had the first double lung > transplant done at Childrens' when she was 12. They didn't think she > would make it to see 21...but she did. However her kidneys and her liver > are starting to fail and even with diet and regular treatments, she is > really not doing very well. They have offered her dialysis, as she is > not a candidate for tx, but she says she prefers not, she is ready to > die. She is a tough young lady and I admire her strength, she has been > fighting to live since the day she was born. She has been prepared to > die for as long as I can remember, yet does everything she can to enjoy > life to its fullest. I am very proud of her. I just wish there was more > that I could do to show her the dialysis need not be as bad as she > envisions. > > > > I wish everyone good health. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Thanks , for sharing. I had to look back at the notes taken from the neph. I had asumed that Blake had 100% kidney function, But the neph didn't say that excately. He said Blake's kidney function was good. Right now we are taking everything one day at a time. After reading posting on this site, I have learned that I'm not alone in that theory. Being a part of this group has help me learn and understand more of what's happening and what to expect. I keep a pen and paper near, to write questions as it goes for the next neph visit. Thanks again for the upbeat news . You will be in my prayers. Tammy > I was first symptomatic in my early teens too and 30 years later am > just recently getting closer to needing dialysis or a transplant. > Statistically only 30-50% reach end stage. That means 50-70% of those > with IgAN have a fairly benign form of IgAN that just needs to be > monitored. Ace Inhibitors are renal protective and keeping BP low is > really iimportant to help protect Blake's kidney function. > > If his function is at 100% at diagnosis, there is a strong probability > he does not have rapidly progressive IgAN. > > > > Update > > > > I want to say thank you for being here as a support group and to all > who answered me. I have enjoyed reading the messages here, and > found them educating on the IgaN. My son, Blake was diagnosed with > this in March of this year, just a few days before his 15th > birthday. . Our first doctor visit with a nephrologist was I a > parent's nightmare. The nephrologists started talking about > dialysis. We have decided to obtain a second opinion from a > nephrologist in Houston, about 2 hours from out home. It gave us > some upbeat news that not all cases progress to the stage of needing > dialysis or transplant. As of now Blake's kidney are still at full > function. I'm excited about that. He has placed Blake on an ACE > inhibitor. I'm going to have to get use to all this > terminology. I've read all the information I could on this IgAN > (also on your sister site). Although there is a lot to absorb, I > still am a little bet confused. I gather in time I will learn more > as this goes on. I'm gathering that there is no way to tell if this > will be aggressive type or not. Is there is any information other > than your sister site that I should as a parent be aware of? Again > thanks to all of you, you guys will always be remembered in our > prayers. > > > > > > > > > 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 7, 2005 Report Share Posted April 7, 2005 Cy thanks for the information. I am up to reading anything I can get my hands on. I will check out the site later tonight. As the days move on I get more relaxed with all of this. At first it was a little overwhelming. I had an aunt that died back in the 1940's from a kidney disease, my grandmother would talk about it. I never imaged I'd hear about it again with one of my children. Thanks again for being here and the information. Take Care Tammy > I'm glad you got that second opinion! I can almost feel you relaxing as I > read your post. > > The IgAN site is pretty comprehensive. You might want to consider exploring > the " Links " section and " News and Announcements " . Reviewing normal renal > function is useful (groan, that stuff from highschool bio). There's also a > great article on IgAN on emedicine.com (requires registration, but > registration's free). The article is a little dense reading, but worth the > time if you are so inclined. > > Cy > Update > > > > > > > > I want to say thank you for being here as a support group and to all > > who answered me. I have enjoyed reading the messages here, and > > found them educating on the IgaN. My son, Blake was diagnosed with > > this in March of this year, just a few days before his 15th > > birthday. . Our first doctor visit with a nephrologist was I a > > parent's nightmare. The nephrologists started talking about > > dialysis. We have decided to obtain a second opinion from a > > nephrologist in Houston, about 2 hours from out home. It gave us > > some upbeat news that not all cases progress to the stage of needing > > dialysis or transplant. As of now Blake's kidney are still at full > > function. I'm excited about that. He has placed Blake on an ACE > > inhibitor. I'm going to have to get use to all this > > terminology. I've read all the information I could on this IgAN > > (also on your sister site). Although there is a lot to absorb, I > > still am a little bet confused. I gather in time I will learn more > > as this goes on. I'm gathering that there is no way to tell if this > > will be aggressive type or not. Is there is any information other > > than your sister site that I should as a parent be aware of? Again > > thanks to all of you, you guys will always be remembered in our > > prayers. > > > > > > > > > > > > > > > > > > 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 7, 2005 Report Share Posted April 7, 2005 thanks for the update, good to hear things are staying stable with your labs. Those dietician appointments are eye openers aren't they! I'm on 1500mg of sodium a day and it was rough working out how to eat and not spend my entire day cooking. For eating out, if you avoid fast food joints and go to actual restaurants (like a Denny's for example) you can order off the side dish menu and get a fairly good meal for cheap. Pasta places are also good, just remember to order your sauce on the side, this way you can add smaller amounts and cut down the sodium. Order salads without olives or cheese and ask for dressing on the side to avoid high sodium dressings...better yet reach for the vinegar and olive oil. The national kidney foundation has a good eating out guide...you need Adobe Acrobat installed to view it here: http://www.kidney.org/atoz/pdf/diningout.pdf It goes over all the different options for restaurants and gives you ideas for good food choices. Most of the fast food places also have their nutritional guide online so you can check them out before you go. Like I know I can eat a 5pc chicken nugget with no sauce and side salad at 's without going over my 500mg of sodium allowed for lunch. Other things you can do is if you know you will be eating out for one meal you can make no-sodium or very low sodium choices for your other two meals which allows you a little more freedom ordering. Like Pierre said you will get used to it and once you have learnt what foods you CAN eat, you won't miss the salt. Amy G. update Well I went to see a dietician this week. It was very interesting, very interesting indeed. I had no idea how much salt is in everything we eat. As my husband said it's much easier to find things without sugar than without salt. She has asked that I reduce my protein to 8 ozs a day including dairy. Therefore, after milk with my cereal its really 6 oz, which is not very big as I found out. Although I am not near ESRD, the docs wanted me to have a consult and the things they really want me to limit is salt and protein. So the protein is a little easier to keep a handle of. The salt I am allowed is 2000-3000mg a day...this is nothing since a bowl of tomato soup as about 2000mg of sodium. Wow, did I ever get a lesson this week. So now I need to begin (slowly) to change my diet, low salt, low protein and keep eye on potassium and phosphorous and my husband is diabetic, so no sugar...I think I am glad summer is just around the corner and we can pile up on raw fruits and veggies. I guess I am going to learn how to can and freeze them this year. :-) I eat out a lot because I travel for business and that is going to make it very difficult to eat low salt. I tried today at lunch and what can you have other than salad? And fast foods or processed foods are so full of sodium to add flavour...it's kind of overwhelming, but I am sure I will get the hang of it. I did learn that my soy milk has only 20mg of salt compared to skim milk of 130mg...so anywhere I can start making better choices I suppose. Otherwise all is well over my world for now. My blood work came back unchanged from 6 months ago, except for a slight rise in protein in my urine, everything else was consistent. So that was good news. My BP is still a little higher than the docs prefer, so we are monitoring that a little more closely. Pierre, I am so encouraged by all the progress you are making. You are an inspiration. I wish my cousin would choose dialysis, but she is not wanting to at this point. She is 21 has CF and had the first double lung transplant done at Childrens' when she was 12. They didn't think she would make it to see 21...but she did. However her kidneys and her liver are starting to fail and even with diet and regular treatments, she is really not doing very well. They have offered her dialysis, as she is not a candidate for tx, but she says she prefers not, she is ready to die. She is a tough young lady and I admire her strength, she has been fighting to live since the day she was born. She has been prepared to die for as long as I can remember, yet does everything she can to enjoy life to its fullest. I am very proud of her. I just wish there was more that I could do to show her the dialysis need not be as bad as she envisions. I wish everyone good health. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Hi , My heart just breaks for your young cousin. It really puts IgAN in perspective doesn't it? My good friend's wife died of CF so I know what a struggle CF can be. I do hope she will consider dialysis though. What a very brave young lady she must be. I am glad your labs looked good . Pierre had some great suggestions for your diet. I also travel for work (WAY too much lately) and I mainly eat salads except for something like a bagel for breakfast. The other option for low protein is pasta, but often that is higher in sodium. It is a good thing I like my fruits and veggies! As Pierre said, cooking from scratch vs canned soups for instance really helps keep the sodium content lower. I just so not use any prepared foods. It really does not take all that much longer, then you can use herbs and spices instead of salt for flavor. In a message dated 4/7/2005 6:29:50 PM Eastern Daylight Time, " Schorn " writes: > >Well I went to see a dietician this week. It was very interesting, very >interesting indeed. I had no idea how much salt is in everything we eat. >As my husband said it's much easier to find things without sugar than >without salt. She has asked that I reduce my protein to 8 ozs a day >including dairy. Therefore, after milk with my cereal its really 6 oz, >which is not very big as I found out. Although I am not near ESRD, the >docs wanted me to have a consult and the things they really want me to >limit is salt and protein. So the protein is a little easier to keep a >handle of. The salt I am allowed is 2000-3000mg a day...this is nothing >since a bowl of tomato soup as about 2000mg of sodium. Wow, did I ever >get a lesson this week. So now I need to begin (slowly) to change my >diet, low salt, low protein and keep eye on potassium and phosphorous >and my husband is diabetic, so no sugar...I think I am glad summer is >just around the corner and we can pile up on raw fruits and veggies. I >guess I am going to learn how to can and freeze them this year. :-) > > > >I eat out a lot because I travel for business and that is going to make >it very difficult to eat low salt. I tried today at lunch and what can >you have other than salad? And fast foods or processed foods are so full >of sodium to add flavour...it's kind of overwhelming, but I am sure I >will get the hang of it. I did learn that my soy milk has only 20mg of >salt compared to skim milk of 130mg...so anywhere I can start making >better choices I suppose. > > > >Otherwise all is well over my world for now. My blood work came back >unchanged from 6 months ago, except for a slight rise in protein in my >urine, everything else was consistent. So that was good news. My BP is >still a little higher than the docs prefer, so we are monitoring that a >little more closely. > > > >Pierre, I am so encouraged by all the progress you are making. You are >an inspiration. I wish my cousin would choose dialysis, but she is not >wanting to at this point. She is 21 has CF and had the first double lung >transplant done at Childrens' when she was 12. They didn't think she >would make it to see 21...but she did. However her kidneys and her liver >are starting to fail and even with diet and regular treatments, she is >really not doing very well. They have offered her dialysis, as she is >not a candidate for tx, but she says she prefers not, she is ready to >die. She is a tough young lady and I admire her strength, she has been >fighting to live since the day she was born. She has been prepared to >die for as long as I can remember, yet does everything she can to enjoy >life to its fullest. I am very proud of her. I just wish there was more >that I could do to show her the dialysis need not be as bad as she >envisions. > > > >I wish everyone good health. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 Thank you , words can not express our joy. The new doctors were great and we are really looking forward to working with this team, we have a really good comfort with them which is more than I can say for her past doctor at least he is willing to be part of a team and the other one wasn't. Two heads or more is always better than one. God Bless and thank you Cathy....Jennell's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 Thank you , words can not express our joy. The new doctors were great and we are really looking forward to working with this team, we have a really good comfort with them which is more than I can say for her past doctor at least he is willing to be part of a team and the other one wasn't. Two heads or more is always better than one. God Bless and thank you Cathy....Jennell's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 Cathy, It's wonderful to hear your doctors interview went well. I do hope this new team can work out a treatment plan that works well for Jennell. Sometimes finding the right doctor (or doctors) makes all the difference in the world. Amy G. Update Good morning everyone, My prayers as always are with all of you for strength and heaalth. We went to see the new doctor yesterday for Jennell. We were very impressed with the final results. He is a great docotr (Rhumatologist) After the interview and exam he then brought us 2 doors down to the office of the Chief of the Renal Department and set an appointment with him for Friday the 15th. They are truely a team that work together for the health of their patients. He acually said that because Jennell's numbers have come down so fast he does not believe that it is the Cytoxan that did it, said it was too soon for it to be working, he believes that it is the prednisone and after we see the neph on the 15th if he is in agreement they may take Jen off the Cytoxan which will make us very happy because that drug really scares us. I liked the fact that he spoke directly to Jennell as the patient and that made her feel really good. Typically he does not take people under 18 yrs old but because s Hopkins recommended us is why I believe her took Jennell's case on. My prayer was that he would diagree with the diagnosis from Children's Hospital but that prayer didn't get answered. He is in complete agreement with the diagnosis but not totally agreeing with the Cytoxen drug. Well, have to go and drive Jennell to the bus stop. Have a great day everyone, keep on smiling God Bless Cathy.....Jennell's Mom 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 11, 2005 Report Share Posted April 11, 2005 Hi Bhanu, You must have a very good Nephrologist to be so thorough and take so much time to talk things out with you. Prednisone is most commonly a 6 month course, but I am sure your Neph will see what your labs look like after you wean down. Sometimes, such as in Amy and 's case, the IgAN appears to be Prednisone dependent, or at least a longer course is warranted. Please make sure that you keep an eye on your blood pressure to make sure it does not inch up as you wean off the prednisone. It is important that your BP not go higher because that is hard on the kidneys. In a message dated 4/11/2005 11:39:46 AM Eastern Daylight Time, Bhanu Suryadevara writes: > >Hello, > >Just thought I will share my discussion during my Neph appointment on >Friday. I am currently on Prednisone 60 mg alternate day...and the >Neph suggested that I go off of it at the end of 6 months by first > going down to 20 mg alternate day for a week and then 10 mg alternate >day for another week and stop. He just wants me to go off of it I >guess...and is not really going to wait for the test results as such >(he wrote a barrage of tests that I will go for later this week). > >I discussed about our arriving child and if he has any information on >genetic predisposition. He said that he feels that the chances of >this appearing in the child are very remote and almost the same as any >body else getting it. He indicated that he heard evidence of IGA >being more genetically predisposed among families that are of >'spanish' heritage. Don't know what that means...but just sharing >what I heard. > >We discussed fish oil...he suggested that I go on fish oil after I am >done with Prednisone as it does not really do any harm. He said that >there is currently a study on fish oil versus prednisone versus ACE >inhibitor and that results are not out yet. We also discussed >cellcept but he said that nephs he know have not had good result with >it (atleast pre transplant). > >Then, there was a small conversation on transplant's life...and he >said that the protocols for post transplant drugs have changed in past >2 years or so and that as a consequence they are expecting the average >life of transplant to increase much more than before (especially for >living related donors). He said that the previous drugs used were >now know to cause damage to kidneys and that the new protocol calls >for Prednisone and another drug...and that hopefully results in the >coming years shows that the life of transplant is increased. > >In terms of history...I was initially only on BP medication (ramipril, >avalide...) and my case was discussed with an expert from Cleveland >Clinic (apparently a friend of this neph) after which the prednisone >treatment was started. My BP has been good but off late the lower >number is creeping to 88 or so while the systolic is around 130. The >Neph was not too concerned at this stage (last time around, the lower >one was 75 range) as he said that once I go off of Prednisone..the BP >should also come down a bit. > >Well, it was a good appointment where he actually spent time with me >explaining all these stuff. I told him about this group and how much >it has helped and he was encouraging in terms of me finding more >information (I was skeptical if he would tell me to not go out and >seek too much information). > >Well..that is another long post from me. Just thought I will share >what I learnt and felt was a good session with my doctor and am glad >to have this neph who really took time and keeps saying " If this was >to my brother...I would do this... " . > >Regards, >Bhanu. > >PS: Pierre...yes, I type very fast and with both hands...that is how >I end up with long mails. > > > >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 14, 2005 Report Share Posted April 14, 2005 , So very sorry to hear this and you will be in my thoughts. Let us know how you are as soon as you can. Peace, dale update > > > Hello All, > > After a long, long discussion, my Pulmanologist, Neurologist and Primary > Care > Physician they all agree, that because of my severely reduced vital > capacity >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 Hi Pierre, Thanks for the info, yes they did mention the risks of taking EPO. I don't see my neph until July, the recommendationf or EPO is based on what the pre-dialysis nurse and the social worker are saying. I do have some coverage for EPO through work, but it only covers 80% or $800 a month. I still have to pay the $200 until I go for this extended health program, because I'm on pre-dialysis. I could ask my HR or work health plan to see if they cover 100%, but I don't think they do. Sophia > I don't know how it works in Alberta, but most places, coverage for epo in > the case of renal failure is free if it's given in hospital or at dialysis > (this would apply to people who are actually esrd, not pre- dialysis), and > for the rest, it's covered by drug plans not based on any time period, but > based on a certain level of hemoglobin or hematocrit. The level is lower > than normal hemoglobin, but high enough for the needed effect. You never get > back to normal levels of hemoglobin when you're esrd, but you are maintained > at was is considered an adequate level, and a good balance between the > benefits and the risks of epo (higher blood pressure, risk of clotting). > Pierre > > Re: update > > > > > > > > Thank you Cy, > > > > Yes, this month has been an especially difficult time for me, it has > > been wearing me down with these medical appointments, adjusting to a > > new diet, dealing with executive/administrative work and wrap-up. > > > > Actually, only two people (both good friends) on the dance club > > executive know about my medical condition. Everyone did see my > > prednisone look, but most don't know what's going on, or think it > > was because I was married recently or something. The reality is > > that I tell very few pple about my condition because I still > > apparently look and act healthier than most pple and with the > > exception of a few close friends that I look to for support and > > trust, I guess I am really a private person after all. > > > > I try not to think about my own condition, or get obssessed with > > it. I like to think there is a lot more about life out there, > > happier things - and I know there are. I am just thankful for what > > I do have. I am especially thankful for this support group and for > > my husband. You are all really amazing. > > > > The extended health coverage is from Alberta Blue Cross, I don't > > really know much about it. Somehow the provincial government (who > > has responsibility to administer the universal health care system we > > have in Canada) is involved in it. There is a waiting period of 3 > > months after you apply before you can qualify for coverage. > > Apparently though, once you get the coverage, it will cover the part > > that my work health benefits don't (currently my work only covers > > 80% - I've been told that I would still have to pay $200 as a result > > without this coverage). So we should apply soon, I guess. > > > > Right now, I do notice I get tired a little more easily...then > > again, I am out four nights a week dancing, and still like to do the > > social things with my friends on the weekends. Oh yeah, and I still > > have to do my dance club thing. ; ) So, I hope that by wrapping up > > my term on the dance club executive, I will have more time for rest - > > and can wait for some time until my EPO shots are paid. > > > > Sophia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 I was on metformin for 6 months, now just diet and exercise controlled. Once my A1c hit 5.2 I asked my doctor if I could try it without drugs and she agreed. The next A1c was 5.4. The one after that was 4.9. Don't worry if you need metformin to help you gain control now. You're not necessarily stuck on it forever if you are willing to be very disciplined with diet and exercise. As with everything, YMMV (your mileage may vary). Christy > I called the doctor and she wants me to start Metformin? Two times a > day and come in for an appointment in one month. hmm, I was hoping to > not start any meds right now but of course, I was too chicken to say > anything to the nurse when she called. So this leads me to another > question. Is this a :no turning back " type of thing? Once I start the > meds will I be on them for good? Or is there a chance to get things > under control and go off of the meds? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Glass, in order for your insurance to pay for testing supplies, you have to get a prescription for them. Make sure you ask your doctor to make the prescription for enough testing strips to do a lot of testing, maybe 10 times a day, especially initially. After you find out how different foods affect you, you might be able to test less often. If the metformin causes diarrhea, eat some yogurt every day. That's what I did, and it worked like a charm for me. It gets all of those gut bacteria in balance or something. Good luck, Sue On Wednesday, October 5, 2005, at 04:48 PM, anonglass62 wrote: > > Also I know all insurance is different but how do you get them to pay > for the testing supplies? I have Blue Cross HMO if anyone has any > experience with them, I would love to hear from you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Glass, in order for your insurance to pay for testing supplies, you have to get a prescription for them. Make sure you ask your doctor to make the prescription for enough testing strips to do a lot of testing, maybe 10 times a day, especially initially. After you find out how different foods affect you, you might be able to test less often. If the metformin causes diarrhea, eat some yogurt every day. That's what I did, and it worked like a charm for me. It gets all of those gut bacteria in balance or something. Good luck, Sue On Wednesday, October 5, 2005, at 04:48 PM, anonglass62 wrote: > > Also I know all insurance is different but how do you get them to pay > for the testing supplies? I have Blue Cross HMO if anyone has any > experience with them, I would love to hear from you. Quote Link to comment Share on other sites More sharing options...
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