Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Dear Deb, ::Big [careful] hugs:: I'm sooo glad to hear that you are feeling better, girfriend, and that your drain is finally gone. How long are you going to have the g-tube in...? Is this a good/bad thing? Take good care and I know exactly what you mean about the " one bite too many " syndrome. I really do think it pays to stop whenever you feel the first pang(s) of discomfort. Take good care, Deb. Lots of love, Trace Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Trace, The g-tube will come out on Mar. 10th. It's a safety mech. If I need fluids, and I still put protein in it if I feel a little out of it. And he has me putting all my meds via it so I can just do food/water/protein down the regular way. My belly is still sore from the last drain, and oozing some slightly pink tinged drainage. I think it was stuck to something. And he had to tug a little bit to get it out. I was all set for it to be like the drain that fell out a month ago. Don't fret ladies, this drain was in since Dec 15, so it had time to get stuck with the healing process. Normally they don't do that. Plus again, I'm a nurse and we always have the weird /nasty things happen. Love, Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Dear Deb, I'm glad to hear that you are doing so well but sorry to read about your drain getting " stuck " ... ouch. My drain was in for about 3 1/2 days and it still hurt like the dickens (burned) when he pulled it out. About the weird medical things happening to nurses.. I guess it's like the old saying that a Cobbler's son always need shoes, huh...? ::grin:: ::Big Hugs:: Love, Trace Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2005 Report Share Posted April 2, 2005 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 8, 2005 Report Share Posted April 8, 2005 Hi Cathy, I am so glad you had such a positive experience with Jenelle's new Rheumatologist and Nephrologist. I am especially pleased that she is responding so well to the Pred and may be able to go off the Cytoxan. I am rejoicing with you! In a message dated 4/8/2005 6:25:01 AM Eastern Daylight Time, " Cathy Waelty " writes: > > >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 What a great neph visit! It sounds like your neph is wonderful at taking the time to answer questions properly. Thanks for filling all of us in. The new fishoil experiments should be interesting. As an aside, I've heard similar remarks from the docs on NephKids regarding new immunosuppressants. Cy Bhanu Suryadevara wrote: 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 13, 2005 Report Share Posted April 13, 2005 Hi , Thanks for the update, you mentioned spina bifida, is there something they can help you with this? Support is what we do best here, have a great day, Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2005 Report Share Posted April 13, 2005 Hi , Thanks for the update, you mentioned spina bifida, is there something they can help you with this? Support is what we do best here, have a great day, Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Hi Sophia, I did not realize you had bypassed me and had lower function than I do. Last I checked (a couple months ago) I was still at 18%. I am due for some lab work soon and I am hoping I am still stable at 18%. I understand the fear associated with the transplant evaluation. It was like drinking from a fire hydrant the first time I went. I felt very overwhelmed by all the statistics, and the side effects of all the meds sounded scary to me too. On the Epo, I can tell you that it truly is a drug that gave me my life back! I think it is a miracle drug. The difference in energy and how tired I was dramatically improved. The needles they use are very small, and I even have been giving myself the injections the past couple of years with no problem. It was only hard the very first time I gave myself the injection. I do hope you can get the extended insurance to cover it. Keep us informed on how Kris' work-up is going. In a message dated 4/19/2005 4:45:03 P.M. Pacific Daylight Time, yipee_ladybug@... writes: Hi everyone, I've not been around much, it's been very busy here as I am trying to wrap up my term as dance club prez and also dealing with lots and lots of doctors appts for transplant evaluation, donor evaluation (for Kris), and pre-care dialysis stuff. I found that these various seminars on transplant, donor and pre- care very interesting - and also very scary. Honestly, it made me (and still does make me) sad that I have reached this stage. I have raged and cried and been depressed, but am slowly getting over it and accepting my condition. The meeting with pre-care turned out to be the most interesting. My dietician told me a lot about what my labs said - now I am on a low sodium-potassium-phosphorus diet, because I was borderline high in all those items and of course it's kinda dangerous. On a surprisingly positive note, the nurse and dietician told me they had never seen a renal patient with such low cholesterol numbers and in all other aspects, I am apparently in good health. My hemoglobin is rather low though (only about 100), so I am waiting for the neph to advise me if I need epo shots. Two things I don't like about this: it's injection only and I hate needles; and it also expensive. My work benefit plan does cover some of it, but it's still hundreds of dollars a month I would need to pay. So we are currently going to apply for additional extended health coverage to coverage that portion also. We'll see what happens. Otherwise, I seem all right for now, stable at 13% function. Not too many physical problems, thank goodness, maybe just a little more tired than usual due to low hemoglobin. Anyways, I've been keeping up with the posts and thinking about all of you. Hope you have a good week! Sophia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Sophia, It's good to hear from you. I was beginning to get a little worried. Thanks for checking in. You must be one awfully strong woman to be dealing with dance club stuff on top of everything else. I'm also very impressed that you're not stuffing your feelings about all this (as I would do) - and I think you'll be a lot healthier for it in the long run. It's scarry stuff to be looking over the edge of this kind of cliff... Hopefully all the positive experiences here will stand you in good stead. We'll all be rooting for you in the weeks and months ahead. A close relative did EPO for non-renal reasons - and if his experience is any measure, it is really the wonder drug that everyone says it is. How long is it going to take to hear back on the extended health coverage? Can you explain a bit more about it? I hate to think of you suffering from any more fatigue than you have to. Big hugs, Cy update > > > Hi everyone, > > I've not been around much, it's been very busy here as I am trying > to wrap up my term as dance club prez and also dealing with lots and > lots of doctors appts for transplant evaluation, donor evaluation > (for Kris), and pre-care dialysis stuff. > > I found that these various seminars on transplant, donor and pre- > care very interesting - and also very scary. Honestly, it made me > (and still does make me) sad that I have reached this stage. I have > raged and cried and been depressed, but am slowly getting over it > and accepting my condition. > > The meeting with pre-care turned out to be the most interesting. My > dietician told me a lot about what my labs said - now I am on a low > sodium-potassium-phosphorus diet, because I was borderline high in > all those items and of course it's kinda dangerous. > > On a surprisingly positive note, the nurse and dietician told me > they had never seen a renal patient with such low cholesterol > numbers and in all other aspects, I am apparently in good health. > > My hemoglobin is rather low though (only about 100), so I am waiting > for the neph to advise me if I need epo shots. Two things I don't > like about this: it's injection only and I hate needles; and it > also expensive. My work benefit plan does cover some of it, but > it's still hundreds of dollars a month I would need to pay. So we > are currently going to apply for additional extended health coverage > to coverage that portion also. We'll see what happens. > > Otherwise, I seem all right for now, stable at 13% function. Not > too many physical problems, thank goodness, maybe just a little more > tired than usual due to low hemoglobin. > > Anyways, I've been keeping up with the posts and thinking about all > of you. Hope you have a good week! > > Sophia > > > > > > > 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 19, 2005 Report Share Posted April 19, 2005 , " Drinking from a fire hydrant " - what a great turn of phrase! Cy Re: update > > > Hi Sophia, > > I did not realize you had bypassed me and had lower function than I do. > Last I checked (a couple months ago) I was still at 18%. I am due for > some lab > work soon and I am hoping I am still stable at 18%. > > I understand the fear associated with the transplant evaluation. It was > like > drinking from a fire hydrant the first time I went. I felt very > overwhelmed > by all the statistics, and the side effects of all the meds sounded scary > to > me too. > > On the Epo, I can tell you that it truly is a drug that gave me my life > back! I think it is a miracle drug. The difference in energy and how > tired I > was dramatically improved. The needles they use are very small, and I > even > have been giving myself the injections the past couple of years with no > problem. > It was only hard the very first time I gave myself the injection. I do > hope > you can get the extended insurance to cover it. > > Keep us informed on how Kris' work-up is going. > > > > > > In a message dated 4/19/2005 4:45:03 P.M. Pacific Daylight Time, > yipee_ladybug@... writes: > > > > Hi everyone, > > I've not been around much, it's been very busy here as I am trying > to wrap up my term as dance club prez and also dealing with lots and > lots of doctors appts for transplant evaluation, donor evaluation > (for Kris), and pre-care dialysis stuff. > > I found that these various seminars on transplant, donor and pre- > care very interesting - and also very scary. Honestly, it made me > (and still does make me) sad that I have reached this stage. I have > raged and cried and been depressed, but am slowly getting over it > and accepting my condition. > > The meeting with pre-care turned out to be the most interesting. My > dietician told me a lot about what my labs said - now I am on a low > sodium-potassium-phosphorus diet, because I was borderline high in > all those items and of course it's kinda dangerous. > > On a surprisingly positive note, the nurse and dietician told me > they had never seen a renal patient with such low cholesterol > numbers and in all other aspects, I am apparently in good health. > > My hemoglobin is rather low though (only about 100), so I am waiting > for the neph to advise me if I need epo shots. Two things I don't > like about this: it's injection only and I hate needles; and it > also expensive. My work benefit plan does cover some of it, but > it's still hundreds of dollars a month I would need to pay. So we > are currently going to apply for additional extended health coverage > to coverage that portion also. We'll see what happens. > > Otherwise, I seem all right for now, stable at 13% function. Not > too many physical problems, thank goodness, maybe just a little more > tired than usual due to low hemoglobin. > > Anyways, I've been keeping up with the posts and thinking about all > of you. Hope you have a good week! > > Sophia > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2005 Report Share Posted May 6, 2005 Hi Sophia, I am just so glad that you will be getting your anemia treated now. You will be amazed at how much better you feel. To me, Procrit is a miracle drug that gave me my life back. The fatigue associated with anemia can truly be debilitating. It takes a few weeks to work because the life cycle of red blood cells is 21 days, but soon you will feel remarkably better. I am so glad you will get it covered for compassionate reasons. Thanks for sharing your good news! In a message dated 5/6/2005 2:07:00 AM Eastern Daylight Time, " yipee_ladybug " writes: >Hi everyone, > >So I have been talking with the renal clinic nurse about drugs and >stuff. My neph got back from his holidays and determined that I need >aranesp and proferrin to deal with my declining Hb problem. So there >was all this talk about the financial aspects of it, and it looks like >I will be covered for " compassionate " reasons - so I can get the >aranesp for free. At least until this supplemental coverage kicks in >a few months from now. I still have to pay for the proferrin, but >it's not much in comparison. > >I asked about taking supplements. No Vitamin D is necessary at this >time, but I guess I have to be more diligent in taking calcium, since >my phosphrous level is somewhat high. > >So that's me for now. > >Sophia > > > > > >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 May 8, 2005 Report Share Posted May 8, 2005 Thank you, I am looking forward to it. I do feel the fatigue now and then, but I am always amazed how much the body can take. At only about 100, I thought I should feel really tired and terrible about it, but I'm not *too* tired. At least, it doesn't feel that way. Sophia > Hi Sophia, > > I am just so glad that you will be getting your anemia treated now. You will be amazed at how much better you feel. To me, Procrit is a miracle drug that gave me my life back. The fatigue associated with anemia can truly be debilitating. It takes a few weeks to work because the life cycle of red blood cells is 21 days, but soon you will feel remarkably better. > > I am so glad you will get it covered for compassionate reasons. Thanks for sharing your good news! > > > > In a message dated 5/6/2005 2:07:00 AM Eastern Daylight Time, " yipee_ladybug " <yipee_ladybug@y...> writes: > > >Hi everyone, > > > >So I have been talking with the renal clinic nurse about drugs and > >stuff. My neph got back from his holidays and determined that I need > >aranesp and proferrin to deal with my declining Hb problem. So there > >was all this talk about the financial aspects of it, and it looks like > >I will be covered for " compassionate " reasons - so I can get the > >aranesp for free. At least until this supplemental coverage kicks in > >a few months from now. I still have to pay for the proferrin, but > >it's not much in comparison. > > > >I asked about taking supplements. No Vitamin D is necessary at this > >time, but I guess I have to be more diligent in taking calcium, since > >my phosphrous level is somewhat high. > > > >So that's me for now. > > > >Sophia > > > > > > > > > > > >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 October 31, 2005 Report Share Posted October 31, 2005 Dear , I'm glad to hear that Annika's surgery went well. It really breaks my heart when Sierra cries before surgery. I'm glad the oral sedation worked for her, it has the opposite effect on Sierra. She acts like a mad drunk. I hope the time flies between now and her activation. Take care and God Bless. Natasha~Mommy to~ (8/25/97) & *Sierra (11/28/00) *Multiple Craniosynostosis, Crouzon's Syndrome, Syndrome, Asthma, Trach, Tracheamalacia, Bronchomalacia, Subglottic Stenosis, Chonal Stenosis, FTT,GERD, G-tube & Nissan, Strabismus, Profound hearing loss, CI implanted 8/19/04. Activated 9/7/04 Sierra's story: www.cappskids.org/CAPPSCranioKidSierra.htm www.tracheostomy.com/trachkids18.htm www.Caringbridge.org/oh/sierra Update Okay, I am finally home for the night. So now can get an email out to those of you who are wondering. Annika's surgery went fine on Friday evening. We left our little girl in the surgery area about 3:25 and saw the surgeon around 6:25-so basically 3 hours but I can't say for sure whether she was in surgery that whole time(don't ask another confusing story but believes it is just someone who didn't know what he was doing in charge of informing families). Dr. Rimmel said everything went fine. He was able to put the new one in and now the old will be sent in to be dissected. The good news is that her right ear looks good. It was her ear tube pulling out(we saw blood coming out of the ear on Wednesday) and they did check and her eardrum is healthy so she is now without a tube on the right ear. The implant is on the left so we will have to wait to see what happens with that tube. The worst part was that Annika became pretty nauseated after surgery so by Saturday a.m. when the resident came in she had not kept anything down at that point. Which meant that we got to stay another night. I was okay with this because really she just layed in bed and either watched TV or slept. We were able to shut off the IV finally around supper time yesterday and she woke up this morning and started to climb the walls!! Nothing was keeping her in that bed and when Dad and her brother came to pick us up she was ready to go!!! To say that this was an easy experience that would not be true. Annika knew exactly where she was the minute we went back into the pre-op area. We had to fight with her just to get the pj's on her. She refused to let them take her vital signs and since they did not want to make her more upset she did not get them done. I can tell you that there was no doubt from the screams heard that she was very healthy at the time. She got to go to the playroom and that was a good thing until they had to give her the little bit of oral sedation so that Mom and Dad don't have to go back into the surgery area with her. She was already feeling the effects of the dose when we put her on the bed to be rolled into surgery. Of course here is Annika, partially sedated and all, kicking her leg off of the bed and saying, " no, no, no. " At least when they wheeled her off she wasn't crying but she was still telling them she wasn't going with them. They did allow her to keep her right processor on until they had her back in the surgery suite. I can say that this probably helped a lot. Now Annika continued to be a non-compliant patient when it came to her vital signs during her whole hospital stay. She was usually very good and took her medicine without much fuss. Though one time yesterday I finally told her that Dr. Rimmel really wanted her to take the medicine and then she consented to take it. I don't know what pull Dr. Rimmel had at the time but at that point I was taking what I could. Today she has continued to feel and act very much like her normal self. The only thing that I noticed is that we were coming back from dropping off a vehicle tonight and she was looking for her blanket. She had become very attached to her blanket the last few days and must have started to miss it. Well, that is about it. She will have to go back and see the surgeon by the end of this week or the beginning of next and then hookup will be in about 3 weeks. Thanks to everyone for all the prayers and support. It is all over and now we wait for hookup. Mom of 4 Marcus 15 13 Jon 11 Annika 3 Bilaterally implant 3/1/04 Hookup 3/25/04 re-implanted left side 10/28/05 spastic diaplegic CP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2005 Report Share Posted October 31, 2005 Oh - what an ordeal for Annika and for you guys but I'm so glad it went well. Keep us posted... Barbara Wanha wrote: >Okay, I am finally home for the night. So now can get an email out to those of you who are wondering. Annika's surgery went fine on Friday evening. We left our little girl in the surgery area about 3:25 and saw the surgeon around 6:25-so basically 3 hours but I can't say for sure whether she was in surgery that whole time(don't ask another confusing story but believes it is just someone who didn't know what he was doing in charge of informing families). Dr. Rimmel said everything went fine. He was able to put the new one in and now the old will be sent in to be dissected. The good news is that her right ear looks good. It was her ear tube pulling out(we saw blood coming out of the ear on Wednesday) and they did check and her eardrum is healthy so she is now without a tube on the right ear. The implant is on the left so we will have to wait to see what happens with that tube. > > > Barbara Mellert Manager, Social Science Computing Kiewit Computing Services Dartmouth College 13A Silsby Hall, HB 6121 Hanover NH 03755 Telephone: 603/646-2877 URL: http://www.dartmouth.edu/~ssc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 Hi ! GREAT news on finding a new doctor way over there in Japan with whom you feel comfortable – that’s AWESOME and I can tell you feel better already! I think it’s great you can be treated with just the T4 and don’t have problems converting and have been able to pinpoint that — my question would be, what is the reason for needing more T4 now though? Did something cause the .100 not to work any longer or is that how this disease works, if you know? Glad to hear you are adjusting, though I understand what you mean by you don’t think you will ever REALLY get used to it – I feel that way about Texas. I was born and raised in New York state, lived another six years in Chicago, and even though I have been in Texas 18 years, I STILL feel I am just “ visiting “ -- it’s just too much of a cultural and weather shock to adapt to for me... And many other displace non-Texans! Keep us posted — any new pics of Japan? sue Hi Everyone, I haven't been on much lately, we're trying to unpack and settle in here in Japan. Things are going pretty well, and we're finally getting over the culture shock somewhat. I don't think I'll ever really get used to it, there are so many differences, but we are at least starting to enjoy some of the differences, especially the food. I like most of the Japanese foods that I've tried, and I even want to try to learn to cook some of it myself. They have classes here that they teach you how to make some of the most popular ones. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 Sue, My hypothyroidism was only diagnosed in September, so I'm still fighting to get the levels right. As for the big jump, it wasn't that big when you realize I've been going up by about one Synthroid dose every 6 weeks since September, and I opted to go for a tiny dose increase in April (from 94mcg to 100mcg) because my TSH wasn't that much over where it needed to be, but I was symptomatic, but didn't want to risk going hyper (did that once, overshot the dose increase and it was not fun at all) and then the end of May, 6 weeks later, I needed another dose change, possibly bigger, up to about 125mcg from 100mcg that I went up to in April, but since we had already checked out of the base, I couldn't get the dose changed there,so I had to wait until we got here, which meant I hadn't had a dose change since early April and it is now early August. I basically skipped a dose increase there with the move, and didn't have enough pills to make my own increase along the way, and couldn't "get" them somewhere due to the fact that we were subject to 100% search and my medical records were right there with me showing how much and how many and what kinds of meds I was supposed to be on. So I just sucked it up and stayed on the 100, going hypo again, until we got here and the first thing I did was check into medical here and got myself an appointment, which wasn't for 2 more weeks at that point. I'm so glad to finally have the dose change I've been needing, and the doc realized that I needed a jump to get me back on track to where I should be. I asked myself the same question though. Why am I still needing steady dose increases? The only thing I can come up with is, that I began being hypo back around 1997 when I had mono (there is a link between the virus that causes mono and people later developing hypothyroidism; I wonder if it's an adrenal link, because mono surely taxed my adrenals, I was sick for two years on and off with complications and it should not have taken that long to get over it, and why on earth nobody ever checked adrenal and thyroid functions at that time I'll never know). Also, my mom his hypothyroid, but hers showed up at the onset of menopause. Mine...well, I'm 27 now, so I was 26 last September when mine was caught, and was probably around 19 or 20 when I developed symptoms and started having weight gain problems. I weigh around 230 now, and thanks to the move and not having a vehicle for the first 2 weeks we were here, I haven't gained any more than that. I am worried now that the 100 to 150 dose change might be too much, too suddenly. Even though I increased the dose myself the first week to 125mcg, so I'm hoping that will help ease the transition. We'll see...if it's too much, I'll back off down to 125 again for another week and put off going for blood work by one more week. I'm already feeling warmer. Crazy, but it was 90 degrees here and with our A/C on low, I was freezing. I couldn't just go outside to get warm or turn off the a/c completely though, because I don't tolerate heat well, either. It makes me feel sick to my stomach when it's that hot out. This has been one very hot summer, even here in Japan. Web Sites, Pictures: www.Lane.com www.IwakuniMCAS.com http://stewartlane.com/gallery/ Be sure to check at the bottom of every set of pictures for more pages in the set. Re: Update Hi !GREAT news on finding a new doctor way over there in Japan with whom you feel comfortable – that’s AWESOME and I can tell you feel better already!I think it’s great you can be treated with just the T4 and don’t have problems converting and have been able to pinpoint that — my question would be, what is the reason for needing more T4 now though? Did something cause the .100 not to work any longer or is that how this disease works, if you know?Glad to hear you are adjusting, though I understand what you mean by you don’t think you will ever REALLY get used to it – I feel that way about Texas. I was born and raised in New York state, lived another six years in Chicago, and even though I have been in Texas 18 years, I STILL feel I am just “ visiting “ -- it’s just too much of a cultural and weather shock to adapt to for me... And many other displace non-Texans! :)Keep us posted — any new pics of Japan?sueOn 8/1/06 9:44 PM, " " <stewlis (AT) gmail (DOT) com> wrote: Hi Everyone, I haven't been on much lately, we're trying to unpack and settle in here in Japan. Things are going pretty well, and we're finally getting over the culture shock somewhat. I don't think I'll ever really get used to it, there are so many differences, but we are at least starting to enjoy some of the differences, especially the food. I like most of the Japanese foods that I've tried, and I even want to try to learn to cook some of it myself. They have classes here that they teach you how to make some of the most popular ones. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 Hi , It makes sense your dosage is still being adjusted since you are newly diagnosed — as far as the 100 to 150 that is a pretty big jump, but how do you feel? Did you find you got hungrier with a dose increase? I sure do the first week or so and I hate it but it’s happened all three times these past 2 years... I think I am on the perfect dose now but I still can’t get the weight to come off. My endo told me I have a metobolic disorder and that makes sense and for me it really does come down to something as “simple” as carbs — if I eat carbs, I gain weight no matter how low my caloric intake is and if I drop carbs, or at least the high glycemic ones, I lose weight without dieting at all --- it’s a bummer cuz I LOVE carbs and they make me “happy” and “satisfied” but they do my body no good. The heat is something that’s always bothered me as well — I have gotten heat-stroke before — never frost bite and I grew up in the Northeast but heat stroke for sure. The fact that I am naturally blonde and fair skinned and burn like a piece of toast on high setting doesn’t help matters! LOL! When is your next blood test to check your TSH? Sue I asked myself the same question though. Why am I still needing steady dose increases? The only thing I can come up with is, that I began being hypo back around 1997 when I had mono (there is a link between the virus that causes mono and people later developing hypothyroidism; I wonder if it's an adrenal link, because mono surely taxed my adrenals, I was sick for two years on and off with complications and it should not have taken that long to get over it, and why on earth nobody ever checked adrenal and thyroid functions at that time I'll never know). Also, my mom his hypothyroid, but hers showed up at the onset of menopause. Mine...well, I'm 27 now, so I was 26 last September when mine was caught, and was probably around 19 or 20 when I developed symptoms and started having weight gain problems. I weigh around 230 now, and thanks to the move and not having a vehicle for the first 2 weeks we were here, I haven't gained any more than that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2006 Report Share Posted August 5, 2006 That does sound like Hashi cycling.. you should nag them into testing your antibodies..... rein... I'm slow today... I had to stare at that a minute to get it! But when it clicked I got the giggles... thanks! hehehehee Topper () On Sat, 5 Aug 2006 12:59:37 -0700 (PDT) DerSpiff writes: I don't know if I have the hashimoto version, haven't been tested, but I do have quite a few of the symptoms. I first read about it in Ann Landers, or whatever they call her column now, and so I thought I'd look it up online. I took the test and wasn't really happy with the results I must say. The symptoms seem to come and go and on occasion I get hyper. Sometimes this'll last for about a week, then the bottom drops out. Then it evens out. Then who knows what. Lately I've been too "tired" to even want to go riding! I've got a barrel run to go to tomorrow and am thinking of taking a rein check ( heheheh.,.....I know, bad pun ) on going cuz I just don't have the umph. And for me to forgo anything horse is unheard of.Spiff Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Hi to everyone on here, This is just an update on me. Back in June I found out that I had IBC and needed a Double Mastectomy. I was 47 at the time. I had surgery on Aug. 1st, had chest expander's placed under the chest muscles that lay flat on your chest wall under my breast that are gone now. But I'm okay with this. I've had my share of complications with lots of pain. Breast Cancer runs in my family, with 2 survivors so far. My half sister and I, she had her five year clean the day that I found out that I had breast cancer. Our grandma a mastectomy back in the early 50's. Then in 1953, the cancer came back in her other breast. She had a mastectomy on the remaining breast. I was born in 1958, in between the last mastectomy my Mom told me that she kept getting headaches and blacking out. It turned out that she had a brain tumor and it took our Grandmother's life. I only remember her from watching her holding and playing with me in movies that Mom took of us after I was born. I feel like I knew her through them and wish she would have survived it. Any way here I am wandering far from my update. After my surgery, I met with my oncologist on August 22, 06 to find out what kind of chemo treatments I should have. She tells me 16 weeks followed with radiation. Aug. 28th I started my chemo. Sick as h__l through them. Sept 3rd my 48th birthday. Complications with my expander's on Sept. 20. Oct. 18th my dog of nine years, Phantom who was diagnosed with Disease when he was 4yrs. To keep him healthy he has to be on meds for the rest of his life. On the 18th of Oct in-between my 3rd and 4th chemo treatments, Phantom got very sick and I had to make a decision to put him to sleep or put him through more pain. I put him to sleep and I was with him, I miss him so much but I have his ashes now so he is in doggy heaven with no more pain. I did my 2nd treatment of Taxol Chemo today Nov 7th. I now can look back at how many treatments are now behind me and I only have 2 more to go. The first one at first felt like I was going to breeze through this until on the 3rd day it hit me like a freight train. It lasted 5 days for me. My Dr. told me to try to cut my pain pills in half and take with a glass of milk on day 2 and hopefully I can control my pain. For this reason when I took them the last time I threw up 3 times. Please pray for me. My Dr. also told me that I may not need radiation. Won't know until I meet with my Radiation Dr. I had a spot that showed up before on my left ovary. So in between chemo treatment s she sent me back again for the good old pelvic ultra sound and while there he did the wonderful Uterus scrap, THAT HURT AND I BLEED FOR DAYS. But everything turned out well, Spot on ovary GONE, uterus looked GOOD. I started crying in the office when I was told the spot was gone. It felt like the weigh was lifted off my shoulders. So I guess this is why she felt that I might not have to face radiation treatments. With all that I've been reading about it, I was scared to have them. I do have chemo brain that I read about. But that's OK, I feel I'm going to be a survivor and be here for a long time to keep bugging my family. lol. I'M SO HAPPY TO SAY I ONLY HAVE 2 MORE CHEMO TREATMENTS TO GO. So I will keep everyone in my prayers that you will also be survivors with me and all the rest here too. Please keep me and my family in your prayers. I'm sorry to write a book and to ramble on and on. Please forgive me for this, God Bless everyone here and hugs go out to all of you here. Cat from IN --------------------------------- Sponsored Link Try Netflix today! With plans starting at only $5.99 a month what are you waiting for? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 Cat, Sorry to hear you got sick form the chemo and also that you have had such a rough time with everything else. I will keep you and your family 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 Update Hi to everyone on here, This is just an update on me. Back in June I found out that I had IBC and needed a Double Mastectomy. I was 47 at the time. I had surgery on Aug. 1st, had chest expander's placed under the chest muscles that lay flat on your chest wall under my breast that are gone now. But I'm okay with this. I've had my share of complications with lots of pain. Breast Cancer runs in my family, with 2 survivors so far. My half sister and I, she had her five year clean the day that I found out that I had breast cancer. Our grandma a mastectomy back in the early 50's. Then in 1953, the cancer came back in her other breast. She had a mastectomy on the remaining breast. I was born in 1958, in between the last mastectomy my Mom told me that she kept getting headaches and blacking out. It turned out that she had a brain tumor and it took our Grandmother's life. I only remember her from watching her holding and playing with me in movies that Mom took of us after I was born. I feel like I knew her through them and wish she would have survived it. Any way here I am wandering far from my update. After my surgery, I met with my oncologist on August 22, 06 to find out what kind of chemo treatments I should have. She tells me 16 weeks followed with radiation. Aug. 28th I started my chemo. Sick as h__l through them. Sept 3rd my 48th birthday. Complications with my expander's on Sept. 20. Oct. 18th my dog of nine years, Phantom who was diagnosed with Disease when he was 4yrs. To keep him healthy he has to be on meds for the rest of his life. On the 18th of Oct in-between my 3rd and 4th chemo treatments, Phantom got very sick and I had to make a decision to put him to sleep or put him through more pain. I put him to sleep and I was with him, I miss him so much but I have his ashes now so he is in doggy heaven with no more pain. I did my 2nd treatment of Taxol Chemo today Nov 7th. I now can look back at how many treatments are now behind me and I only have 2 more to go. The first one at first felt like I was going to breeze through this until on the 3rd day it hit me like a freight train. It lasted 5 days for me. My Dr. told me to try to cut my pain pills in half and take with a glass of milk on day 2 and hopefully I can control my pain. For this reason when I took them the last time I threw up 3 times. Please pray for me. My Dr. also told me that I may not need radiation. Won't know until I meet with my Radiation Dr. I had a spot that showed up before on my left ovary. So in between chemo treatment s she sent me back again for the good old pelvic ultra sound and while there he did the wonderful Uterus scrap, THAT HURT AND I BLEED FOR DAYS. But everything turned out well, Spot on ovary GONE, uterus looked GOOD. I started crying in the office when I was told the spot was gone. It felt like the weigh was lifted off my shoulders. So I guess this is why she felt that I might not have to face radiation treatments. With all that I've been reading about it, I was scared to have them. I do have chemo brain that I read about. But that's OK, I feel I'm going to be a survivor and be here for a long time to keep bugging my family. lol. I'M SO HAPPY TO SAY I ONLY HAVE 2 MORE CHEMO TREATMENTS TO GO. So I will keep everyone in my prayers that you will also be survivors with me and all the rest here too. Please keep me and my family in your prayers. I'm sorry to write a book and to ramble on and on. Please forgive me for this, God Bless everyone here and hugs go out to all of you here. Cat from IN --------------------------------- Sponsored Link Try Netflix today! With plans starting at only $5.99 a month what are you waiting for? Quote Link to comment Share on other sites More sharing options...
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