Guest guest Posted June 12, 2002 Report Share Posted June 12, 2002 bev, Good luck, and welcome. I am a new member also. The group has helped me. Please keep following up with your progress, it really helps others! Oftern times a member of the group will be able to arm you with better questions for the doctor. Everyone has been so helpful to me. Beverley Housego wrote: Hello my name is beverley and i have recently found out that i have Ashermansfollowing a miscarraige/erpc June 01. i had my cervix opened feb thisyear, after 8 months with no period, but still failed to conceive. iwas sent for follicle tracking and measuring my endometrium and i saw onthe ultrasound form "mild asherman's" this is the way i found out i hadashermans. the scan revealed my endometrium is only 5mm. i also haveendometrosis caused by the ashermans and the scan revealed nosignificant follicle for ovulation. im due to see my doc 26 June. thats my sorry story in brief, i feel so fed up can i be helpedlook forward to hearing from you/your site.bev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2002 Report Share Posted June 12, 2002 bev, Good luck, and welcome. I am a new member also. The group has helped me. Please keep following up with your progress, it really helps others! Oftern times a member of the group will be able to arm you with better questions for the doctor. Everyone has been so helpful to me. Beverley Housego wrote: Hello my name is beverley and i have recently found out that i have Ashermansfollowing a miscarraige/erpc June 01. i had my cervix opened feb thisyear, after 8 months with no period, but still failed to conceive. iwas sent for follicle tracking and measuring my endometrium and i saw onthe ultrasound form "mild asherman's" this is the way i found out i hadashermans. the scan revealed my endometrium is only 5mm. i also haveendometrosis caused by the ashermans and the scan revealed nosignificant follicle for ovulation. im due to see my doc 26 June. thats my sorry story in brief, i feel so fed up can i be helpedlook forward to hearing from you/your site.bev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2002 Report Share Posted June 12, 2002 bev, Good luck, and welcome. I am a new member also. The group has helped me. Please keep following up with your progress, it really helps others! Oftern times a member of the group will be able to arm you with better questions for the doctor. Everyone has been so helpful to me. Beverley Housego wrote: Hello my name is beverley and i have recently found out that i have Ashermansfollowing a miscarraige/erpc June 01. i had my cervix opened feb thisyear, after 8 months with no period, but still failed to conceive. iwas sent for follicle tracking and measuring my endometrium and i saw onthe ultrasound form "mild asherman's" this is the way i found out i hadashermans. the scan revealed my endometrium is only 5mm. i also haveendometrosis caused by the ashermans and the scan revealed nosignificant follicle for ovulation. im due to see my doc 26 June. thats my sorry story in brief, i feel so fed up can i be helpedlook forward to hearing from you/your site.bev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Bev, Are you from England? There ate other group members from there that may be able to recommend doctors etc. You can see if there were any highly recommended ones by going to the website. You need to go in were it says"database". You will find a lot of what you need there. I am finally myself just on track and going to the correct doctors. I will attach my story. If you would like to talk to others, read there resonses on the website, and respond. If you have questions, go to the website, and post, and then send. It will come up on the web for people to reply to your specific questions. As for the doctor, be strong from the start! I was not, and should have left my regular OB months ago. ASK HOW MANY CASES LIKE THIS THEY HAVE SEEN. IF THEY ANSWER A LOW NUMBER, DO NOT LET THEM TREAT YOU, BECAUSE THEY WILL NOT GET IT RIGHT THE FIRST TIME. THIS IS WHY WE ARE ALL HERE! Feel free to ask me anything you would like, Kunin’s Story (As of 6/15/02) I was 8 weeks pregnant and miscarried on January 2nd. Immediately afterwards, I had a d and c. After 11 weeks, my period did not resume. I took the progesterone challenge, and failed. I then took the estrogen and progesterone challenge, and failed this too. My doctor scheduled me for a diagnostic hysteroscopy in his office. It was painful, and unsuccessful. He could not get the necessary instruments past my cervix. I was then scheduled for a surgical hysteroscopy on May 23rd. I had a thick layer of scar tissue covering my cervix that was removed. Unfortunately, during surgery, my uterus was punctured. I am hearing that this is common even with A list doctors. My lining in my uterus is thicker. Last checked, I was at 5mm, from under 4mm. I am currently on my last day of estrogen. I took 1.25mg for 21 days. I am seeing a local RE in Stamford, CT on the 23rd of June, and will see an A list RE on the 3rd of July in NYC. I will update with new information, as I get it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Bev, Are you from England? There ate other group members from there that may be able to recommend doctors etc. You can see if there were any highly recommended ones by going to the website. You need to go in were it says"database". You will find a lot of what you need there. I am finally myself just on track and going to the correct doctors. I will attach my story. If you would like to talk to others, read there resonses on the website, and respond. If you have questions, go to the website, and post, and then send. It will come up on the web for people to reply to your specific questions. As for the doctor, be strong from the start! I was not, and should have left my regular OB months ago. ASK HOW MANY CASES LIKE THIS THEY HAVE SEEN. IF THEY ANSWER A LOW NUMBER, DO NOT LET THEM TREAT YOU, BECAUSE THEY WILL NOT GET IT RIGHT THE FIRST TIME. THIS IS WHY WE ARE ALL HERE! Feel free to ask me anything you would like, Kunin’s Story (As of 6/15/02) I was 8 weeks pregnant and miscarried on January 2nd. Immediately afterwards, I had a d and c. After 11 weeks, my period did not resume. I took the progesterone challenge, and failed. I then took the estrogen and progesterone challenge, and failed this too. My doctor scheduled me for a diagnostic hysteroscopy in his office. It was painful, and unsuccessful. He could not get the necessary instruments past my cervix. I was then scheduled for a surgical hysteroscopy on May 23rd. I had a thick layer of scar tissue covering my cervix that was removed. Unfortunately, during surgery, my uterus was punctured. I am hearing that this is common even with A list doctors. My lining in my uterus is thicker. Last checked, I was at 5mm, from under 4mm. I am currently on my last day of estrogen. I took 1.25mg for 21 days. I am seeing a local RE in Stamford, CT on the 23rd of June, and will see an A list RE on the 3rd of July in NYC. I will update with new information, as I get it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Bev, Are you from England? There ate other group members from there that may be able to recommend doctors etc. You can see if there were any highly recommended ones by going to the website. You need to go in were it says"database". You will find a lot of what you need there. I am finally myself just on track and going to the correct doctors. I will attach my story. If you would like to talk to others, read there resonses on the website, and respond. If you have questions, go to the website, and post, and then send. It will come up on the web for people to reply to your specific questions. As for the doctor, be strong from the start! I was not, and should have left my regular OB months ago. ASK HOW MANY CASES LIKE THIS THEY HAVE SEEN. IF THEY ANSWER A LOW NUMBER, DO NOT LET THEM TREAT YOU, BECAUSE THEY WILL NOT GET IT RIGHT THE FIRST TIME. THIS IS WHY WE ARE ALL HERE! Feel free to ask me anything you would like, Kunin’s Story (As of 6/15/02) I was 8 weeks pregnant and miscarried on January 2nd. Immediately afterwards, I had a d and c. After 11 weeks, my period did not resume. I took the progesterone challenge, and failed. I then took the estrogen and progesterone challenge, and failed this too. My doctor scheduled me for a diagnostic hysteroscopy in his office. It was painful, and unsuccessful. He could not get the necessary instruments past my cervix. I was then scheduled for a surgical hysteroscopy on May 23rd. I had a thick layer of scar tissue covering my cervix that was removed. Unfortunately, during surgery, my uterus was punctured. I am hearing that this is common even with A list doctors. My lining in my uterus is thicker. Last checked, I was at 5mm, from under 4mm. I am currently on my last day of estrogen. I took 1.25mg for 21 days. I am seeing a local RE in Stamford, CT on the 23rd of June, and will see an A list RE on the 3rd of July in NYC. I will update with new information, as I get it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 K, In the files section "our stories" we have started a folder to add our stories so that if a member wants to read up on someone's story, they can be referred to this section. This will help all members not repeat their story again and again. After I read your story, I was wondering if you could add the story you just sent to us? Would that be possible? Also, this applies to all members who would like to add their stories to this section. Poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 K, In the files section "our stories" we have started a folder to add our stories so that if a member wants to read up on someone's story, they can be referred to this section. This will help all members not repeat their story again and again. After I read your story, I was wondering if you could add the story you just sent to us? Would that be possible? Also, this applies to all members who would like to add their stories to this section. Poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 K, In the files section "our stories" we have started a folder to add our stories so that if a member wants to read up on someone's story, they can be referred to this section. This will help all members not repeat their story again and again. After I read your story, I was wondering if you could add the story you just sent to us? Would that be possible? Also, this applies to all members who would like to add their stories to this section. Poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Poly, I will add my story, and ask others to please do the same. Poly Spyrou wrote: K, In the files section "our stories" we have started a folder to add our stories so that if a member wants to read up on someone's story, they can be referred to this section. This will help all members not repeat their story again and again. After I read your story, I was wondering if you could add the story you just sent to us? Would that be possible? Also, this applies to all members who would like to add their stories to this section. Poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Poly, I will add my story, and ask others to please do the same. Poly Spyrou wrote: K, In the files section "our stories" we have started a folder to add our stories so that if a member wants to read up on someone's story, they can be referred to this section. This will help all members not repeat their story again and again. After I read your story, I was wondering if you could add the story you just sent to us? Would that be possible? Also, this applies to all members who would like to add their stories to this section. Poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Poly, I will add my story, and ask others to please do the same. Poly Spyrou wrote: K, In the files section "our stories" we have started a folder to add our stories so that if a member wants to read up on someone's story, they can be referred to this section. This will help all members not repeat their story again and again. After I read your story, I was wondering if you could add the story you just sent to us? Would that be possible? Also, this applies to all members who would like to add their stories to this section. Poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2002 Report Share Posted October 2, 2002 Hi , glad to hear things have settled down a bit for you did they say exactly what it was? See that your sugery is the same day as mine, I'll be sure to think of you as I count back from 10. Take Care Lesia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2002 Report Share Posted October 2, 2002 Hi , glad to hear things have settled down a bit for you did they say exactly what it was? See that your sugery is the same day as mine, I'll be sure to think of you as I count back from 10. Take Care Lesia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2002 Report Share Posted October 2, 2002 Hi , glad to hear things have settled down a bit for you did they say exactly what it was? See that your sugery is the same day as mine, I'll be sure to think of you as I count back from 10. Take Care Lesia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2003 Report Share Posted September 15, 2003 Congrats! It sounds like you are following the WW points successfully! > [Original Message] > Subject: Hello > > Hello Everyone, > > I wanted to introduce myself to the group and let you know that I've lost 5 > pounds this week. I was at 183 and am now at 178 pounds. I'm trying to > follow the Weight Watcher points. > > Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 Hi y, Those are just fantastic results! That would indicate you are at about 74% kidney function. My clearance is running in the low 20s, and I have still not yet started dialysis. Your protein level also not too bad. They start to get worried if it is over 3 grams a day, and my Neph doesn't panic until I get over 6 grams a day so you are in good shape. The most important thing for you is to make sure you keep your blood pressure in check, and please do not let IgAN define your life. It is only a small part of what you have, it is not who you are. Live each day to the fullest extent possible, and don't forget to count your blessings every day :-) I think that if you have to have IgAN, you are in great shape as far as where your lab results are. I just pray they stay stable where they are for many many years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 Hi y, Just so you know, this is still a very positive result. You have 74 function and that is great, even with a protein spill at 0.4 which is at the very manageable stage. I kind of got a little chuckle about your world being kidney, kidney, kidneys! I think that everyone here can identify with those feelings. No matter where you're at in the kidney disease process, when the diagnosis comes, it can consume a lot of your daily thoughts. Read what you can, keep yourself informed, maintain a positive attitude and you will be able to emotionally cope with this disease. Many of us here are in the 25 year club! (meaning still no dialysis after 25+ years) Here's hoping that your function will remain at 74% for many years to come and that we will be able to induct you into our club someday! Connie Hello Hello all, Well, I got a urine test back today and it was like this: Clearance 74 Proteinuria: 0.4 grams Is this okay? It's amazing how different my life has become since diagnosis. I find myself thinking about kidneys ALL the time, and obsessing over my diet. I, sadly enough, even will pass a person on the street and think " I wonder what their creatinine is? " ...My world is all KIDNEY KIDNEY KIDNEYS! Besides my son, that is Oh and that little thing called work. Anyways, just wondering what the labs mean. Hope everyone had a good weekend and is feeling well, thank you. y To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 Hi y, Just so you know, this is still a very positive result. You have 74 function and that is great, even with a protein spill at 0.4 which is at the very manageable stage. I kind of got a little chuckle about your world being kidney, kidney, kidneys! I think that everyone here can identify with those feelings. No matter where you're at in the kidney disease process, when the diagnosis comes, it can consume a lot of your daily thoughts. Read what you can, keep yourself informed, maintain a positive attitude and you will be able to emotionally cope with this disease. Many of us here are in the 25 year club! (meaning still no dialysis after 25+ years) Here's hoping that your function will remain at 74% for many years to come and that we will be able to induct you into our club someday! Connie Hello Hello all, Well, I got a urine test back today and it was like this: Clearance 74 Proteinuria: 0.4 grams Is this okay? It's amazing how different my life has become since diagnosis. I find myself thinking about kidneys ALL the time, and obsessing over my diet. I, sadly enough, even will pass a person on the street and think " I wonder what their creatinine is? " ...My world is all KIDNEY KIDNEY KIDNEYS! Besides my son, that is Oh and that little thing called work. Anyways, just wondering what the labs mean. Hope everyone had a good weekend and is feeling well, thank you. y To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 Hi y, Just so you know, this is still a very positive result. You have 74 function and that is great, even with a protein spill at 0.4 which is at the very manageable stage. I kind of got a little chuckle about your world being kidney, kidney, kidneys! I think that everyone here can identify with those feelings. No matter where you're at in the kidney disease process, when the diagnosis comes, it can consume a lot of your daily thoughts. Read what you can, keep yourself informed, maintain a positive attitude and you will be able to emotionally cope with this disease. Many of us here are in the 25 year club! (meaning still no dialysis after 25+ years) Here's hoping that your function will remain at 74% for many years to come and that we will be able to induct you into our club someday! Connie Hello Hello all, Well, I got a urine test back today and it was like this: Clearance 74 Proteinuria: 0.4 grams Is this okay? It's amazing how different my life has become since diagnosis. I find myself thinking about kidneys ALL the time, and obsessing over my diet. I, sadly enough, even will pass a person on the street and think " I wonder what their creatinine is? " ...My world is all KIDNEY KIDNEY KIDNEYS! Besides my son, that is Oh and that little thing called work. Anyways, just wondering what the labs mean. Hope everyone had a good weekend and is feeling well, thank you. y To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 y, I think all of go through that. At least for the first few months, kidneys were a dinner conversation topic every night. It's gotten better now, even though I feel like, right now, I'm living from doctor's appointment to doctor's appointment, anxious to know if anything has changed. But, when the next appointment is still 2 weeks away, I just have to suck it up and deal with it. I THINK your labs sound o.k. I'm not sure about the creatinine, but the proteinuria isn't bad at all. _____ From: scootercarlson Sent: Monday, April 12, 2004 1:11 PM To: iga-nephropathy Subject: Hello Hello all, Well, I got a urine test back today and it was like this: Clearance 74 Proteinuria: 0.4 grams Is this okay? It's amazing how different my life has become since diagnosis. I find myself thinking about kidneys ALL the time, and obsessing over my diet. I, sadly enough, even will pass a person on the street and think " I wonder what their creatinine is? " ...My world is all KIDNEY KIDNEY KIDNEYS! Besides my son, that is Oh and that little thing called work. Anyways, just wondering what the labs mean. Hope everyone had a good weekend and is feeling well, thank you. y To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 y, I think all of go through that. At least for the first few months, kidneys were a dinner conversation topic every night. It's gotten better now, even though I feel like, right now, I'm living from doctor's appointment to doctor's appointment, anxious to know if anything has changed. But, when the next appointment is still 2 weeks away, I just have to suck it up and deal with it. I THINK your labs sound o.k. I'm not sure about the creatinine, but the proteinuria isn't bad at all. _____ From: scootercarlson Sent: Monday, April 12, 2004 1:11 PM To: iga-nephropathy Subject: Hello Hello all, Well, I got a urine test back today and it was like this: Clearance 74 Proteinuria: 0.4 grams Is this okay? It's amazing how different my life has become since diagnosis. I find myself thinking about kidneys ALL the time, and obsessing over my diet. I, sadly enough, even will pass a person on the street and think " I wonder what their creatinine is? " ...My world is all KIDNEY KIDNEY KIDNEYS! Besides my son, that is Oh and that little thing called work. Anyways, just wondering what the labs mean. Hope everyone had a good weekend and is feeling well, thank you. y To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 y, I think all of go through that. At least for the first few months, kidneys were a dinner conversation topic every night. It's gotten better now, even though I feel like, right now, I'm living from doctor's appointment to doctor's appointment, anxious to know if anything has changed. But, when the next appointment is still 2 weeks away, I just have to suck it up and deal with it. I THINK your labs sound o.k. I'm not sure about the creatinine, but the proteinuria isn't bad at all. _____ From: scootercarlson Sent: Monday, April 12, 2004 1:11 PM To: iga-nephropathy Subject: Hello Hello all, Well, I got a urine test back today and it was like this: Clearance 74 Proteinuria: 0.4 grams Is this okay? It's amazing how different my life has become since diagnosis. I find myself thinking about kidneys ALL the time, and obsessing over my diet. I, sadly enough, even will pass a person on the street and think " I wonder what their creatinine is? " ...My world is all KIDNEY KIDNEY KIDNEYS! Besides my son, that is Oh and that little thing called work. Anyways, just wondering what the labs mean. Hope everyone had a good weekend and is feeling well, thank you. y 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 13, 2004 Report Share Posted April 13, 2004 Sharon, I just wanted to tell you that if you happen to be in Midland or Odessa, Dr. Oliver is the one you need to see. He's pretty great. _____ From: tomas juarez Sent: Monday, April 12, 2004 9:59 PM To: iga-nephropathy Subject: Hello Hello ! With all that is happening in your life, to take the time and notice my little " ya'll " slip, I had to giggle. I've been in Texas for the last 10 or 11 years. My dad was in the military so we traveled a lot. I've always had the bad habit of picking up different accents in each place we lived. I am praying right along with you as you go on your job hunt. I've always believed that God will not give us any more than we can handle. My husband is also the financial woorier [sp?]. I truly hope things go well for you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Sharon, I just wanted to tell you that if you happen to be in Midland or Odessa, Dr. Oliver is the one you need to see. He's pretty great. _____ From: tomas juarez Sent: Monday, April 12, 2004 9:59 PM To: iga-nephropathy Subject: Hello Hello ! With all that is happening in your life, to take the time and notice my little " ya'll " slip, I had to giggle. I've been in Texas for the last 10 or 11 years. My dad was in the military so we traveled a lot. I've always had the bad habit of picking up different accents in each place we lived. I am praying right along with you as you go on your job hunt. I've always believed that God will not give us any more than we can handle. My husband is also the financial woorier [sp?]. I truly hope things go well for you. Quote Link to comment Share on other sites More sharing options...
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