Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Christy: Welcome to our family. You sound like a great sister (mine donated to me). I was not on dialysis, so I cannot help with that, but you should be looking for another opinion, and looking at tx centers in CA. A living related donor is the best donor (and non related is still better than cadavaric), so your willingness tobe tested is great. I wish I could help with a doc in CA, but I am buried in the snow in NJ! Good luck with your " education " here, and we're always available for questions. My sister is a member of the board as well, although she's lurking more han posting lately. You can e-mail her at decemberdonor@... directly. I'll also check to make sure she's seen your post if you have questions. cgcall1@... wrote: Hello~~ My name is Christy. I have joined this group to try to help my sister who has IGA. She discovered that she was ill very late. When she started she had 20% function and went to dialysis three times a week. She is still going three times a week but is at 0% function. She has had a real hard time with her connections they keep getting clogged. Today she had her 7 th surgery for connections. They have done tests today to see why. I have concerns about the quality of care she is getting from her Nephrologist. I am looking for the best Dr. in OC California. I have sat back until now and let her do whatever she thought best. I can no longer sit and watch this. My intention is to make sure she gets tested to see if she is a canidate for transplant. If she is I will get tested to see if I can give her a kidney. If I am not a match I will take a proactive stand and help her through finding a kidney if at all possible. Any & all suggestions are welcome. I am sooo new at this and I am willing to take baby steps. Please help...... Thank you. Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Christy, I forgot to ask. I live in Northern CA, but I am not sure what OC stands for. I have a fantastic Neph if you are close to the Bay Area. In a message dated 1/23/2005 4:47:14 PM Eastern Standard Time, Cohen writes: > >Christy: > >Welcome to our family. You sound like a great sister (mine donated to me). I was not on dialysis, so I cannot help with that, but you should be looking for another opinion, and looking at tx centers in CA. A living related donor is the best donor (and non related is still better than cadavaric), so your willingness tobe tested is great. I wish I could help with a doc in CA, but I am buried in the snow in NJ! > >Good luck with your " education " here, and we're always available for questions. My sister is a member of the board as well, although she's lurking more han posting lately. You can e-mail her at decemberdonor@... directly. I'll also check to make sure she's seen your post if you have questions. > > > >cgcall1@... wrote: >Hello~~ > >My name is Christy. I have joined this group to try to help my sister who >has IGA. She discovered that she was ill very late. When she started she had 20% >function and went to dialysis three times a week. She is still going three >times a week but is at 0% function. She has had a real hard time with her >connections they keep getting clogged. Today she had her 7 th surgery for >connections. They have done tests today to see why. > >I have concerns about the quality of care she is getting from her >Nephrologist. I am looking for the best Dr. in OC California. I have sat back until now >and let her do whatever she thought best. I can no longer sit and watch >this. > >My intention is to make sure she gets tested to see if she is a canidate for >transplant. If she is I will get tested to see if I can give her a kidney. >If I am not a match I will take a proactive stand and help her through finding >a kidney if at all possible. > >Any & all suggestions are welcome. I am sooo new at this and I am willing to >take baby steps. Please help...... > >Thank you. > >Christy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Pierre: Thank you for your input. I have been thinking that I should go to Dialysis with her and get the straight information on what seems to be happening. I will do that soon. I am going to talk to her about going to a place by the name of University of California at Irvine. It seems like a really good place and near where she lives. I am hoping she will change Neph's. She and I will have to talk a lot about all this. Up until now I have left things in her hands. Now things are too bad and I have to take the ball and run with it the best I can. You are right she is too tired to manage this whole thing herself. Thank you so much for your input. All the things I have been feeling that I should be doing you and others are encouraging me to do. So here I go watch me!!!! Her husband has been helping her so much. right now he is worn out from hospital visits and dialysis every other day. She gets dialysis three times a week for three and a half hours. I think I need to get her a nurse to help her so her husband can rest some himself. Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Pierre: Thank you for your input. I have been thinking that I should go to Dialysis with her and get the straight information on what seems to be happening. I will do that soon. I am going to talk to her about going to a place by the name of University of California at Irvine. It seems like a really good place and near where she lives. I am hoping she will change Neph's. She and I will have to talk a lot about all this. Up until now I have left things in her hands. Now things are too bad and I have to take the ball and run with it the best I can. You are right she is too tired to manage this whole thing herself. Thank you so much for your input. All the things I have been feeling that I should be doing you and others are encouraging me to do. So here I go watch me!!!! Her husband has been helping her so much. right now he is worn out from hospital visits and dialysis every other day. She gets dialysis three times a week for three and a half hours. I think I need to get her a nurse to help her so her husband can rest some himself. Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 Hi Christy, I was trying to think of a city that was OC, and Orange County never occurred to me. I am down there every month on business, week before last in fact, but my Neph is in Northern CA. Marty is down that way so he might be able to refer you to a good neph if he is still lurking. We have not heard from him in a while. In a message dated 1/23/2005 10:55:24 P.M. Pacific Standard Time, cgcall1@... writes: : OC means Orange County in southern California. Anaheim is a perfect example. That is where my sister lives. Thank you for asking. Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 I hope you don't have it too. There are mixed opinions on IgAN being hereditary or not by the way. Some researchers feel it is, and others feel it is not. I personally think that at least some of the time it is because my paternal grandmother died of kidney failure and my sister has a very mild case of IgAN. Fortunately she just has some protein and blood in her urine, but her kidney function is near normal. I pray your tests will clear you of IgAN and anything else that would prohibit you from donating to your sister. In a message dated 1/23/2005 11:18:06 P.M. Pacific Standard Time, cgcall1@... writes: : Thank you so much. I am learning really fast about some of this important stuff. I was told that Igan is hereditary and that I have to be tested for it also..I know nothing about that. But will find out real soon I guess. I sure hope I don't have it so I can donate to my sister. Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 Betsy: I was wondering what to recuperation period would be and so on. I am 58 and my sister is 57. So we are no spring chickens but I have the heart and energy of a 30 year old. I am over weight right now and I hired a trainer to get me fit. I was going to do it any way. But I thought I might not want to be too small so I have a little back-up weight behind me. I need to have a physical (I do that yearly any way) and really be prepared and pray that we are a match. If not I have to pound the pavement. Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 Betsy: Again thanks so much for sharing. The weight thing is really weird but makes sense. You probably couldn't give a 100 pound person the kidney of a 200 pound person. I gained a lot of weight 6 years ago when I quit smoking and have continued to gain so I am at 180 right now. My sister was 350 when she was diagnosed. She is 274 now which is 6 months later. I have been so upset that I could not get this weight off. So I finally hired the trainer. I better get to the Dr. soon so I can figure out how much weight I really need to loose or NOT. I thank the Lord for leading me to this site and thank you for being so gracious and sharing. Christy Northridge, Ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 Betsy: Again thanks so much for sharing. The weight thing is really weird but makes sense. You probably couldn't give a 100 pound person the kidney of a 200 pound person. I gained a lot of weight 6 years ago when I quit smoking and have continued to gain so I am at 180 right now. My sister was 350 when she was diagnosed. She is 274 now which is 6 months later. I have been so upset that I could not get this weight off. So I finally hired the trainer. I better get to the Dr. soon so I can figure out how much weight I really need to loose or NOT. I thank the Lord for leading me to this site and thank you for being so gracious and sharing. Christy Northridge, Ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 Betsy, As always, thanks for posting. I know I've been concerned about the age thing with donating and you just put that worry to rest. It sounds like you were so lucky to share a room! I know several parents on NephKids who complain about the long distance between themselves and their offspring when they donate. What a heartening way to go! Cy Re: New To Group > > I had had 2 major abdominal surgeries prior to the transplant and was > surprised to find I actually had less pain than I expected. It really > wasn't that bad. Getting my full energy back was a little slow, but > that was probably due at least in part to my age (54 at the time). But > the job of seeing my son feeling so good made the recovery much easier. > We actually shared a room in the hospital (which maybe isn't so common > at other centers) and had a lot of fun the 3 days we were in the > hospital and were able to help and encourage each other quite a bit. I > hardly ever think about having only 1 kidney. Everything seems fine, > and I certainly don't notice any difference. Let me know if you have > specific questions. > > Betsy > > > > > Thanks Betsy...that is my birthday 7/17... good day to do anything > > important > > . Thank you for the encouragement. I have a lot of work to do. As you > > can > > imagine my sister is at zero percentage kidney function so I have to > > work pretty > > fast. She didn't want to bother anyone so she put off telling us how > > bad it > > was. God love her. I just want her life to be the best it can be for > > as long as > > it can be. I will just have to live a very clean life with only one > > kidney. I > > do pretty much any way so no big deal...I may want to find out what > > you went > > through and all that while I am preparing for this. I have had four > > major > > surgeries in my life so maybe it was preparing me for this. > > > > Christy > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 They kept us in separate rooms the first night, supposedly because they had to check hourly and believed it would be too disruptive to my sleep. I thought that was bogus but was too out of it to argue. Then the next morning, they wheeled his bed into my room and we were together the rest of the time. We had talked on the phone the afternoon and evening before, but I hadn't seen him yet and was terribly frustrated by that. My husband went back and forth between the 2 rooms, which were next door to each other, and gave me reports, but it was so great to see him the next morning, and he already looked 100% better - good color in his face (I thought at first he had a fever - had forgotten how he looked before ESRD), great appetite, etc. Betsy > Betsy, > As always, thanks for posting. I know I've been concerned about the > age > thing with donating and you just put that worry to rest. It sounds > like you > were so lucky to share a room! I know several parents on NephKids who > complain about the long distance between themselves and their > offspring when > they donate. What a heartening way to go! > Cy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2006 Report Share Posted September 17, 2006 Welcome Colleen, I am sorry to hear about all of your relatives with breast cancer. It certainly IS scary. Some people say if you have the genetic testing and they find you positive you can get denied for insurance. I think there may be a few ladies here that have had it done. You might also want to talk to your family dr. Be sure to keep up with your mammos and self exams and report anything unusual to your dr immediately. I will keep you in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html BreastCancerStories.com http://www.breastcancerstories.com/content/view/433/161/ Angel Feather Loomer www.angelfeatherloomer.blogspot.com Check out my other ornaments at www.geocities.com/chucky5741/bcornament.html Lots of info and gifts at: www.cancerclub.com New to group Hi, I am new here. I do not have breast cancer but have a very stong family history of breast cancer on my moms side. The first person to have breast cancer was my moms oldest sister who was diagnoised in 1990. She died in 1991 because the cancer had spread to other parts of her body. About 2 years later my moms youngest sister sister was also diagnoised with breast cancer. She had several kinds of treatments for this and is a survivor. She had a cancer scare again this year and was treated with oral meds. Last month I had a 34 year old cousin also on my moms side of the family only this time it was her brothers daughter. My cousin was diagnosed 4 years ago and it spread to her brain, spine, and lungs. It was a very difficult time because she sufferd so much. She left behind a 12 year old and 13 year old. We have yet another cousin who again is on my moms side of the family another brothers daughter was found to have cancer. We are still realing from the death of my other cousin and now we have this new diagnosis. The cousing that was just diagnosed had a double mastectomy this week and will be have reconstructive surgery at another time. She is doing really well right now. She had the double mastectomy because she didn;t want to go through what my other cousin did. This is a scary time right now and I am not sure what to think about all of it. I was wondering if I should have the genetic testing done. I get yearly mammograms done and do a breast exam every month or try to. I have not spoken to my doctor about the genetic testing yet because I am hoping I can talk to some one who has had it done and what they went through. I am sorry this is long but this is the first time I had talked to any one about this who is outside my family. Any help will be appreciated. Colleen ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.405 / Virus Database: 268.12.4/449 - Release Date: 9/15/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2006 Report Share Posted September 17, 2006 Welcome Colleen, I am sorry to hear about all of your relatives with breast cancer. It certainly IS scary. Some people say if you have the genetic testing and they find you positive you can get denied for insurance. I think there may be a few ladies here that have had it done. You might also want to talk to your family dr. Be sure to keep up with your mammos and self exams and report anything unusual to your dr immediately. I will keep you in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html BreastCancerStories.com http://www.breastcancerstories.com/content/view/433/161/ Angel Feather Loomer www.angelfeatherloomer.blogspot.com Check out my other ornaments at www.geocities.com/chucky5741/bcornament.html Lots of info and gifts at: www.cancerclub.com New to group Hi, I am new here. I do not have breast cancer but have a very stong family history of breast cancer on my moms side. The first person to have breast cancer was my moms oldest sister who was diagnoised in 1990. She died in 1991 because the cancer had spread to other parts of her body. About 2 years later my moms youngest sister sister was also diagnoised with breast cancer. She had several kinds of treatments for this and is a survivor. She had a cancer scare again this year and was treated with oral meds. Last month I had a 34 year old cousin also on my moms side of the family only this time it was her brothers daughter. My cousin was diagnosed 4 years ago and it spread to her brain, spine, and lungs. It was a very difficult time because she sufferd so much. She left behind a 12 year old and 13 year old. We have yet another cousin who again is on my moms side of the family another brothers daughter was found to have cancer. We are still realing from the death of my other cousin and now we have this new diagnosis. The cousing that was just diagnosed had a double mastectomy this week and will be have reconstructive surgery at another time. She is doing really well right now. She had the double mastectomy because she didn;t want to go through what my other cousin did. This is a scary time right now and I am not sure what to think about all of it. I was wondering if I should have the genetic testing done. I get yearly mammograms done and do a breast exam every month or try to. I have not spoken to my doctor about the genetic testing yet because I am hoping I can talk to some one who has had it done and what they went through. I am sorry this is long but this is the first time I had talked to any one about this who is outside my family. Any help will be appreciated. Colleen ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.405 / Virus Database: 268.12.4/449 - Release Date: 9/15/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2006 Report Share Posted September 17, 2006 Morning Everyone! I wanted to introduce myself - I am Sharon, 36 years old from Las Vegas, NV. I was just diagnosed with inductile carcinoma in situ (invasive) this past Tuesday (found the lump in my monthly exam). I have my appointment with the surgeon this Wednesday, so we are praying for the best of news and preparing for the worst. I think I have been through every emotion possible in the past week, and for each of them, my husband was there, stitching silver linings into my black clouds. I have finally hit the acceptance part of this, and have realized that this does not have me, I have it. I am attacking this problem, head one, one step at a time - knowing in the end I am going to come out a better person on the other end, with a huge full life ahead of me, and will now stop sleepwalking through most of it (spending a beautiful weekend on the couch watching TV is NOT going to be part of my new future). I beleive I have been put in this position for a reason - and I am going to use that to get me and my family and friends through this! Thanks for listening!!!! And thank you for letting me be a part of all of this - it really does help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2006 Report Share Posted September 17, 2006 Hi Sharon and welcome! You have a wonderful attitude. I also had a great attitude and it sure does help. I have had people ask if there was one thing I could change in my life what would it be. I have never said my breast cancer. I believe it was a blessing in disguise. It made me stop and smell the roses and enjoy the little things in life that I had been missing. I will keep you in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html BreastCancerStories.com http://www.breastcancerstories.com/content/view/433/161/ Angel Feather Loomer www.angelfeatherloomer.blogspot.com Check out my other ornaments at www.geocities.com/chucky5741/bcornament.html Lots of info and gifts at: www.cancerclub.com New to Group Morning Everyone! I wanted to introduce myself - I am Sharon, 36 years old from Las Vegas, NV. I was just diagnosed with inductile carcinoma in situ (invasive) this past Tuesday (found the lump in my monthly exam). I have my appointment with the surgeon this Wednesday, so we are praying for the best of news and preparing for the worst. I think I have been through every emotion possible in the past week, and for each of them, my husband was there, stitching silver linings into my black clouds. I have finally hit the acceptance part of this, and have realized that this does not have me, I have it. I am attacking this problem, head one, one step at a time - knowing in the end I am going to come out a better person on the other end, with a huge full life ahead of me, and will now stop sleepwalking through most of it (spending a beautiful weekend on the couch watching TV is NOT going to be part of my new future). I beleive I have been put in this position for a reason - and I am going to use that to get me and my family and friends through this! Thanks for listening!!!! And thank you for letting me be a part of all of this - it really does help! ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.405 / Virus Database: 268.12.4/449 - Release Date: 9/15/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2006 Report Share Posted September 17, 2006 Hi Sharon and welcome to the group! These ladies are the best and you should get a lot of good info here. Best of luck with your surgeon visit on Wednesday. Sounds like you are surrounded by support and love and that's soooooo important - and that you have such a positive attitude already! That's so great. I have generally had a pretty good attitude about my B/C from the start (diagnosed March of this past year) but there have been up's and down's along the way. In those times, lean on your friends and family and they'll pull you through. Best of luck this week and keep us posted. Ellen > > Morning Everyone! > > I wanted to introduce myself - I am Sharon, 36 years old from Las > Vegas, NV. I was just diagnosed with inductile carcinoma in situ > (invasive) this past Tuesday (found the lump in my monthly exam). I > have my appointment with the surgeon this Wednesday, so we are praying > for the best of news and preparing for the worst. I think I have been > through every emotion possible in the past week, and for each of them, > my husband was there, stitching silver linings into my black clouds. I > have finally hit the acceptance part of this, and have realized that > this does not have me, I have it. I am attacking this problem, head > one, one step at a time - knowing in the end I am going to come out a > better person on the other end, with a huge full life ahead of me, and > will now stop sleepwalking through most of it (spending a beautiful > weekend on the couch watching TV is NOT going to be part of my new > future). I beleive I have been put in this position for a reason - and > I am going to use that to get me and my family and friends through > this! Thanks for listening!!!! And thank you for letting me be a part > of all of this - it really does help! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2010 Report Share Posted March 20, 2010 On you r higjh cortisol dosing the chances of high RT3 are pretty high. Ritalin causing high coritlls and then buring out adnreals can cause this too by the fluctuating hormoens . -- Artistic Grooming- Hurricane WV http://www.stopthethyroidmadness.com/ http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/ http://health.groups.yahoo.com/group/RT3_T3/ http://groups.yahoo.com/group/HypoPets/ Quote Link to comment Share on other sites More sharing options...
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