Guest guest Posted September 30, 2004 Report Share Posted September 30, 2004 Bonnie, I'm sorry that you weren't feeling well! Hopefully that will change soon! Next time you're here we should try to meet for dinner or at the Mall of America or something! I'd be game for that. I hope your appointment goes well! ~Dana Re: Menopause and Prednisone - " watchout " ( & CellCept & Gift of Life Hi , thank you for the kind words. I did hit the sack as soon as I went home last night. Got up at 2:00 am. and now in Bloomington, Minn. I think I'm gonna take a break tomorrow and go to the Minneapolis Zoo. Sounds like fun huh? My appointment at Mayo is on Friday. My appointments are nothing to worry about these days, because I never get my results then. Due to the research study, everything is shipped to New Jersey, then Catie faxes me my results after my appointment. I guess that's a good way to have it in some respects, cause then I don't worry before my appointment. Anyway, better run, there's someone else waiting to use the " shared " computer here at the motel. Pretty cool huh, that they leave a computer for anyone to use... Take good care of your self. Hope you get a vacation pretty soon. Thanks again for all your kind words. Bonnie W4JC@... wrote:Hi Bonnie, Those extreme fatigue days do come unfortunately. Try to get to bed extra early, and have a safe trip to Mayo. Let us know what you find out. In a message dated 9/28/2004 8:49:17 PM Eastern Daylight Time, Bonnie Duran writes: >Sounds cool ! Have to let us know how it comes out..... Well, I'm beat tonight. Although totally unlike me, I'm going home from work without doing any afterwork " honeydews " . Back to Mayo tomorrow. Haven't packed yet, and all I feel like doing is sleeping. Don't know why I'm sooooo tired tonight. Oh well, quick complaining. See you guys..... Hope everyone is doing well. Bonnie > > Cohen wrote:Consider it done (or at least tried). > >A TiVo is a digital VCR (kinda). It's a computer that attaches to your TV, and records the shows you want onto a hard drive instead of tape. The great thing is that the recording is digital, so you can make a large number of copies of the recording without losing the definition. OK, getting techie - gotta stop. > > > >Bonnie Duran wrote: >, that would be cool if you could copy it. What the heck is " tivo " ? ((((double chuckle...))) My kids tell me how behind I am in the times.....Bonnie > > Cohen wrote:I have the first one on my Tivo. I am waiting for all of them, and them I will try to make a VCR tape that we can pass around. I've never copied something off the tivo, but how hard could it be ;-) (chuckling)... > >I am finally getting around to e-mails from last week. Long couple of days at the end of the week and then the holiday. At least I didn't have to fast this year.... > > > >Bonnie Duran wrote: >Any one know if there's any chance they are going to repeat the first of the series of Gift of Life? If so, please, please, please give me a jingle. Also does anyone know the # of the channel on TV for Discovery? One more question, I will be in Minnesota during the next one which I think is scheduled for Sept. 30th, anyone know what time to watch it from there? I know Barb gave us the web site for the series, but I can not " look " at it as I have " fire walls " here at work, so cannot access it. Once again sorry for my stupidity, but just have never been much of a TV watcher. Thanks!! Bonnie > >Rita Nucciarone wrote:Hey Bonnie, > >When I take CellCept on an empty stomach I noticed my legs are very wobbly, especially noticable when walking up and down stairs. I have to really hold on to the railing so not to lose my balance. Also I feel more nausea...so I try to make sure I eat a little something with it. The feeling you had that was similar to an epinephrine reaction is scary...I've had one of those a while back while having dental work done. I don't ever want to feel like that again! > >PS Talk about stupid, I tuned in and was all ready to watch and realized it was on the following day. The following day it skipped my mind totally and I fell asleep. I have a difficult time staying up past 8:00PM. I am so fatigued lately. I think I've caught a little bug. I have a 3-day conference to attend in Seattle next week and I so want to healthy for it! Got my fingers crossed! Hugs, Rita > >Bonnie Duran wrote: >Hi Rita, Hope everything is going well for you. So, you could relate with the old Prednisone/Menopause dilemma, ehh??!! I didn't even want to go there, but I would have if I had too. Glad there is another alternative for me. I hope I will do as well as you with the CellCept, (versus possible placebo), but I'm pretty sure I'm on the " real stuff " . So far, so good. Little bit more edema, still pitting in my shin, but can get my shoes on etc. Weight gain of about 4 #. Little nauseated espec. after the 6 am dose. But here's a weird one...check this out.... around 8:00 am for 3 days in a row this week, I felt like I had taken 150 mg of prednisone (or perhaps epinephrine(((!!)))). I got real tremorous inside, felt like I was gonna jump out of my skin. I had tried to take the CellCept on an empty stomach, since that's the way you're supposed to take it (and thought if I developed problems with GI stuff, I would then change to adminster with food). Anyway when I got this weird >feeling, I thought O.K. I'd better eat, (supposedly slows down the absorption). In about an hour it went away. Ever feel that way on CellCept? It feels mighty weird, but glad it didn't last long. I wasn't prepared for that one. (Although I have felt very similar when I was on 60 mg. of Prednisone, but these episodes were more pronounced than that.) Bonnie >P.S. My stupid question regarding the Gift of Life Series was even more stupid than I thought. I somehow thought the show was on Friday, instead of Thursday, so missed the first of the series. Man was I upset. That will teach me to read my Email, and not miss any days. Did you get to watch it? What were the best points they highlighted?Anyway, better run for now. Happy Friday.... Bonnie > >Rita Nucciarone wrote: >Hi Bonnie, > >I was one of the ones you referred to in your post who was on Prednisone during menopause. It was not a pretty picture. At the time I was taking Black Cohosh for my hot flashes (I prefer to call it " my personal summers " ) when my neph said NOPE - can't take the Black Cohosh. I felt like a woman on the edge - no doubt. Luckily I was placed on CellCept and weaned off of prednisone....I returned to normal - at least I'd like to think so....Rita > >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 September 30, 2004 Report Share Posted September 30, 2004 Bonnie I know that washed out drug change feeling. I don't plan anything for a week after a change in dose just due to feeling icky until my body adjusts to the new stuff. I hope you start to feel better soon. I love the story about the woman you met on the plane. It made me really appreciate what I have and made me realize I need to downsize again...I still have too much stuff out in my garage. Hey are you in Colorado Springs on Mondays? I am in town every Monday morning until about noon...thought maybe we could meet up for lunch, even if it's just in the building you work at. Good luck with your appointments at Mayo. Let us know how things go. Amy G. Re: Menopause and Prednisone - " watchout " ( & CellCept & Gift of Life > > > Hi , thank you for the kind words. I did hit the sack as soon as I went home last night. Got up at 2:00 am. and now in Bloomington, Minn. I think I'm gonna take a break tomorrow and go to the Minneapolis Zoo. Sounds like fun huh? My appointment at Mayo is on Friday. My appointments are nothing to worry about these days, because I never get my results then. Due to the research study, everything is shipped to New Jersey, then Catie faxes me my results after my appointment. I guess that's a good way to have it in some respects, cause then I don't worry before my appointment. Anyway, better run, there's someone else waiting to use the " shared " computer here at the motel. Pretty cool huh, that they leave a computer for anyone to use... Take good care of your self. Hope you get a vacation pretty soon. Thanks again for all your kind words. Bonnie > > W4JC@... wrote:Hi Bonnie, > > Those extreme fatigue days do come unfortunately. Try to get to bed extra early, and have a safe trip to Mayo. > > Let us know what you find out. > > > > In a message dated 9/28/2004 8:49:17 PM Eastern Daylight Time, Bonnie Duran writes: > > >Sounds cool ! Have to let us know how it comes out..... Well, I'm beat tonight. Although totally unlike me, I'm going home from work without doing any afterwork " honeydews " . Back to Mayo tomorrow. Haven't packed yet, and all I feel like doing is sleeping. Don't know why I'm sooooo tired tonight. Oh well, quick complaining. See you guys..... Hope everyone is doing well. Bonnie > > > > Cohen wrote:Consider it done (or at least tried). > > > >A TiVo is a digital VCR (kinda). It's a computer that attaches to your TV, and records the shows you want onto a hard drive instead of tape. The great thing is that the recording is digital, so you can make a large number of copies of the recording without losing the definition. OK, getting techie - gotta stop. > > > > > > > >Bonnie Duran wrote: > >, that would be cool if you could copy it. What the heck is " tivo " ? ((((double chuckle...))) My kids tell me how behind I am in the times.....Bonnie > > > > Cohen wrote:I have the first one on my Tivo. I am waiting for all of them, and them I will try to make a VCR tape that we can pass around. I've never copied something off the tivo, but how hard could it be ;-) (chuckling)... > > > >I am finally getting around to e-mails from last week. Long couple of days at the end of the week and then the holiday. At least I didn't have to fast this year.... > > > > > > > >Bonnie Duran wrote: > >Any one know if there's any chance they are going to repeat the first of the series of Gift of Life? If so, please, please, please give me a jingle. Also does anyone know the # of the channel on TV for Discovery? One more question, I will be in Minnesota during the next one which I think is scheduled for Sept. 30th, anyone know what time to watch it from there? I know Barb gave us the web site for the series, but I can not " look " at it as I have " fire walls " here at work, so cannot access it. Once again sorry for my stupidity, but just have never been much of a TV watcher. Thanks!! Bonnie > > > >Rita Nucciarone wrote:Hey Bonnie, > > > >When I take CellCept on an empty stomach I noticed my legs are very wobbly, especially noticable when walking up and down stairs. I have to really hold on to the railing so not to lose my balance. Also I feel more nausea...so I try to make sure I eat a little something with it. The feeling you had that was similar to an epinephrine reaction is scary...I've had one of those a while back while having dental work done. I don't ever want to feel like that again! > > > >PS Talk about stupid, I tuned in and was all ready to watch and realized it was on the following day. The following day it skipped my mind totally and I fell asleep. I have a difficult time staying up past 8:00PM. I am so fatigued lately. I think I've caught a little bug. I have a 3-day conference to attend in Seattle next week and I so want to healthy for it! Got my fingers crossed! Hugs, Rita > > > >Bonnie Duran wrote: > >Hi Rita, Hope everything is going well for you. So, you could relate with the old Prednisone/Menopause dilemma, ehh??!! I didn't even want to go there, but I would have if I had too. Glad there is another alternative for me. I hope I will do as well as you with the CellCept, (versus possible placebo), but I'm pretty sure I'm on the " real stuff " . So far, so good. Little bit more edema, still pitting in my shin, but can get my shoes on etc. Weight gain of about 4 #. Little nauseated espec. after the 6 am dose. But here's a weird one...check this out.... around 8:00 am for 3 days in a row this week, I felt like I had taken 150 mg of prednisone (or perhaps epinephrine(((!!)))). I got real tremorous inside, felt like I was gonna jump out of my skin. I had tried to take the CellCept on an empty stomach, since that's the way you're supposed to take it (and thought if I developed problems with GI stuff, I would then change to adminster with food). Anyway when I got this weird > >feeling, I thought O.K. I'd better eat, (supposedly slows down the absorption). In about an hour it went away. Ever feel that way on CellCept? It feels mighty weird, but glad it didn't last long. I wasn't prepared for that one. (Although I have felt very similar when I was on 60 mg. of Prednisone, but these episodes were more pronounced than that.) Bonnie > >P.S. My stupid question regarding the Gift of Life Series was even more stupid than I thought. I somehow thought the show was on Friday, instead of Thursday, so missed the first of the series. Man was I upset. That will teach me to read my Email, and not miss any days. Did you get to watch it? What were the best points they highlighted?Anyway, better run for now. Happy Friday.... Bonnie > > > >Rita Nucciarone wrote: > >Hi Bonnie, > > > >I was one of the ones you referred to in your post who was on Prednisone during menopause. It was not a pretty picture. At the time I was taking Black Cohosh for my hot flashes (I prefer to call it " my personal summers " ) when my neph said NOPE - can't take the Black Cohosh. I felt like a woman on the edge - no doubt. Luckily I was placed on CellCept and weaned off of prednisone....I returned to normal - at least I'd like to think so....Rita > > > >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 1, 2004 Report Share Posted October 1, 2004 Bonnie: I'll say some extra prayers for you tonight. Take care. WIsh I could give you a cyber-hug...we are all here for you, ok?? , mom to Rob On Fri, 1 Oct 2004 17:32:31 EDT W4JC@... writes: Hi Bonnie, I am sorry your day is so difficult today. I was so concerned about how you would do with increasing the Cellcept dose to 2000 mg/day. I could not tolerate that dose, and had to have mine lowered to 1000 mg/day. Bonnie, when we are forced to confront the severity of our health (or in my case come out of our cocoon of denial) it is easy to feel overwhelmed emotionally. Add new medications to that, and it is a difficult and dangerous mix as our bodies are trying to adjust to changes both physically and emotionally. I am sending hugs your way dear Bonnie, and I want you to know you are not in this alone. Believe me when I say that we feel one another's pains as well as share in the times of rejoicing over good news. I do pray that your Cellcept will bring you to a place of sharing good news. Be gentle with yourself, and allow yourself time to cry too. That is one of God's ways of releasing emotions, and remember that He sees every tear you cry and is right there with you too. God bless you, In a message dated 10/1/2004 1:38:35 PM Pacific Daylight Time, bd4679@... writes: > Hi Amy, You must have ESP. I'm having a day like you did went you vented > on line. That is sooooo hard for me to do. I was thinking about talking to > off line, but I think you must have had ESP (or a little guardian > angel?) so perhaps a little get together on Monday would be good. Bad day.....I'll > get over it. No actually horrible day, maybe I won't get over it. Thanks > for being there Amy. I'm so tearful I can hardly stand it. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2004 Report Share Posted October 1, 2004 Hi , Thanks for the CyberHug, " just what the NP ordered " , (not the doc), excuse me Dave. HEHEHE. I also need to pray a lot more than I have been. I certainly need a much closer connection right now. Thanks for being there . You guys are truely the best in the world. Bonnie snooksmama@... wrote:Bonnie: I'll say some extra prayers for you tonight. Take care. WIsh I could give you a cyber-hug...we are all here for you, ok?? , mom to Rob On Fri, 1 Oct 2004 17:32:31 EDT W4JC@... writes: Hi Bonnie, I am sorry your day is so difficult today. I was so concerned about how you would do with increasing the Cellcept dose to 2000 mg/day. I could not tolerate that dose, and had to have mine lowered to 1000 mg/day. Bonnie, when we are forced to confront the severity of our health (or in my case come out of our cocoon of denial) it is easy to feel overwhelmed emotionally. Add new medications to that, and it is a difficult and dangerous mix as our bodies are trying to adjust to changes both physically and emotionally. I am sending hugs your way dear Bonnie, and I want you to know you are not in this alone. Believe me when I say that we feel one another's pains as well as share in the times of rejoicing over good news. I do pray that your Cellcept will bring you to a place of sharing good news. Be gentle with yourself, and allow yourself time to cry too. That is one of God's ways of releasing emotions, and remember that He sees every tear you cry and is right there with you too. God bless you, In a message dated 10/1/2004 1:38:35 PM Pacific Daylight Time, bd4679@... writes: > Hi Amy, You must have ESP. I'm having a day like you did went you vented > on line. That is sooooo hard for me to do. I was thinking about talking to > off line, but I think you must have had ESP (or a little guardian > angel?) so perhaps a little get together on Monday would be good. Bad day.....I'll > get over it. No actually horrible day, maybe I won't get over it. Thanks > for being there Amy. I'm so tearful I can hardly stand it. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Bonnie: I continue to keep you in my prayers. This has got to be a tough time for you. I know that the swelling has got to be such a challenge in itself, with trying to work, not to mention the emotional part of dealing with everything. How long till you get the results on all the blood work you sent off?? No news from Dr. Kashtan yet. Yes, they sent the biopsy tissue samples.. It will be a few more weeks for results. We saw Dr. Devarajan on Tuesday. He was going to a nephrology convention in St. Louis on Wednesday, and was going to discuss Rob's case with Dr. Kashtan once more. At the visit, we had great news! The cozaar is working well, no blood or protein in Rob's urine at the visit! Talk about ecstatic! Dr. D. high-fived Rob after he looked at his urine. I was so glad. I didn't want the Cozaar dose to be raised as I know that it would be likely to cause some hypotension for Rob. He already gets lightheaded if he gets up too fast. We are praying that the Cozaar works for a long long time. Once the results are back from Dr. Kashtan, we'll sit down and discuss long term prognosis, I'm sure. Rob knows a little about the Alport's diagnosis, but I haven't told him everything yet. He does know that he faces the possibility of renal failure and dialysis and transplant. He told me that he is going to live his life one day at a time and not worry about that. Which I think is awesome! He also had a visit with rheumatology and his physical exam is soooo much better on his new drug, Enbrel. They increased his dose as he is now up to adult weight (126 lbs, and 5'6). We were discussing the Alport's diagnosis , and the rheumy blurts out " Does deafness run in the family? " And Rob said WHAT?? So we sort of brushed it off, and later I asked Rob what he thought about it, and he said that he was fine. I told him that there was a possiblity that he could have hearing problems later on, but that the hearing test the pediatrician ran in August was perfect, so we didn't need to worry about that now. And I know he won't ! He has the most amazing quality of being so upbeat and positive. I have learned so much from him. Bonnie, I hope that your swelling will ease soon. How is the new grandbaby coming along? , mom to Rob, 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Hi , Sorry it took me a day or so to respond, but I wanted to make sure I had enough time to jot you a few lines. Thanks so much again for all of your support and prayers. It's a bit of a trying time, but you know me, I stay so busy at work, that I don't have time to really dwell on it too much. The hardest thing with the swelling is not fitting into my pants, and just the heaviness, but oh well. Maybe I'm due for new clothes anyway? I know they are just trying to save kidney function by not increasing diuretic, so that's cool. I am ABSOLUTELY ELATED about Rob's blood work. My gosh, how great is that, No Protein, No blood. Double Awesome!!!!! Dr. Devarajan sounds so cool, giving Rob the " high 5 " , I bet Rob was overjoyed!! I am so glad the Cozaar is working well. I wonder what everyone did in the days before ACE i and ARB's. After Dr. Kashton reviews everything, do you guys all sit down together to discuss? Or does Dr. Devarajan discuss the findings of Dr. Kashtan? I can't imagine what it's like to discuss those heavy duty issues with Rob. I just can't imagine. It's hard enough for me to talk to Em about the hereditary component of Fabry's to her while she is expecting. I am going VERY VERY slowly. She knows a little about Fabry's, and the fact that if I do in fact have it, that it is hereditary, and effects the kidneys and other organs, but it is sooooo hard to tell her any details, unless I know for sure that in fact I test positive. I will tell her the results of the repeat alphagalactosidase level as soon as it comes back. Hopefully that will open up some discussion in this area. It will take another 2 - 3 weeks to get the alphagalactosidase level back, then the folks at Mount Sinai (Dana the research coordinator and Dr. Desnick the Fabry guru and anyone else on the team) get together and review the 21 page packet I had to complete, the kidney biopsy, dermatologist report on the angiokeratomas, Echo report, and 3 generation pedigree, then they decide at what level of " chance " I am to have the affected or mutant gene. Then if they think there is enough substantial evidence, then they proceed with DNA assay and Lymphoid Cell line (that was the other 13 vials of blood that I just sent them). Em and Bry want to know if it is a boy or a girl, and they go back to the OB doc next Tuesday, so that will also be a factor in how much and what info I give her and when, since the boys are affected more seriously, (end stage renal disease at age 20 - 30) I am nearly positive this will not affect her pregnancy, but may give them some time to decide regarding if the baby is a boy, if they want to pursue amiocentesis etc. to determine if in fact the boy has the gene as well. I am TICKLED PINK about Rob's success with Embrel. Is he injecting himself, or are you injecting for him? He is one very COOL son indeed. So optimistic. Did he get this characteristic from his Mom? Will the Embrel be long term, or will it put him in a " remission " , then can he go off for a while? Regarding the insensitivity of the " rheumy " as you say... This will change one day. I hope he is never faced with illness, nor anyone in his family, however if he does face that path one day, you know as well as I, he will become much more sensitive and compassionate in his care. I'm only sorry you guys had to bear the brunt of his insensitive question. And perhaps not what he asked, but how he asked it. He will learn wisdom, but it always comes with experience and the true desire to become humble. Sometimes it is hard as a patient or family member to accept each care provider in their journey in wisdom. I remember when my mom was dying and on a ventilator in the hospital, (breast CA with mets to the lung) and they were giving her a trial of weaning her off the vent, (directly from 100% O2 if you can imagine). Well the respiratory therapist went to lunch, and NONE of the nurses knew how to adjust the vent settings and put her back on. She went into resp. distress. I about lost it with them. I " balled " them out, and told them how incompetent they were, and they should never be responsible for a vent patient if they don't know what the heck their doing. Then I went down to the lunch room to talk to the resp. therapist. I then hired a private duty nurse to stay with her 24/7. She was GREAT. A recovery room nurse that I clearly remember to the day (20 years ago). Extrememly competent, and would let my mom have anything she wanted, gingerale, a bite of chocolate or whatever. I'll never forget her... It was a humbling experience for the incompetent nurses as well as myself. I had no idea I could be so assertive, but again, it was my mom. Just imagine if it was one of my kids..... Ahh yes, how to learn to be humble..... Bonnie P.S. Tell Rob I said howdy, and thanks for taking such good care of himself and his mom. (((smile))) & (((hugs))) snooksmama@... wrote: Bonnie: I continue to keep you in my prayers. This has got to be a tough time for you. I know that the swelling has got to be such a challenge in itself, with trying to work, not to mention the emotional part of dealing with everything. How long till you get the results on all the blood work you sent off?? No news from Dr. Kashtan yet. Yes, they sent the biopsy tissue samples.. It will be a few more weeks for results. We saw Dr. Devarajan on Tuesday. He was going to a nephrology convention in St. Louis on Wednesday, and was going to discuss Rob's case with Dr. Kashtan once more. At the visit, we had great news! The cozaar is working well, no blood or protein in Rob's urine at the visit! Talk about ecstatic! Dr. D. high-fived Rob after he looked at his urine. I was so glad. I didn't want the Cozaar dose to be raised as I know that it would be likely to cause some hypotension for Rob. He already gets lightheaded if he gets up too fast. We are praying that the Cozaar works for a long long time. Once the results are back from Dr. Kashtan, we'll sit down and discuss long term prognosis, I'm sure. Rob knows a little about the Alport's diagnosis, but I haven't told him everything yet. He does know that he faces the possibility of renal failure and dialysis and transplant. He told me that he is going to live his life one day at a time and not worry about that. Which I think is awesome! He also had a visit with rheumatology and his physical exam is soooo much better on his new drug, Enbrel. They increased his dose as he is now up to adult weight (126 lbs, and 5'6). We were discussing the Alport's diagnosis , and the rheumy blurts out " Does deafness run in the family? " And Rob said WHAT?? So we sort of brushed it off, and later I asked Rob what he thought about it, and he said that he was fine. I told him that there was a possiblity that he could have hearing problems later on, but that the hearing test the pediatrician ran in August was perfect, so we didn't need to worry about that now. And I know he won't ! He has the most amazing quality of being so upbeat and positive. I have learned so much from him. Bonnie, I hope that your swelling will ease soon. How is the new grandbaby coming along? , mom to Rob, 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Bonnie: I am overwhelmed by how you are putting up with all the swelling. And knowing that if you did take a diuretic, it might give at least some temporary relief. That has got to be tempting. But truly understand why it can't be prescribed. You are one strong lady. You know, they never tell you that parenting is one of the hardest jobs you will ever do, do they? I always say it is my greatest joy and my greatest challenge. Here you are facing this diagnosis, yet, you are going very slowly in informing your daughter about the issues it might bring up for your grandchild. I cannot imagine the tightrope you must be walking right now. Actually, I am not at ALL mad at Rob's rheumy. He really wasn't being intentionally insensitive, he just sort of actually blurted out that question without thinking. This man was Rob's THIRD rheumatologist. The first one we saw was so cruel (made him do the duck walk when he had bilateral hip effusions, which was excruciating, and made very cruel remarks when Rob cried after an exam) and Rob begged me never to take him back there. He was the only pediatric rheumy in this metropolitan area. It was a blessing in disguise to leave there, though our journey to this third and final rheumy involved another rheumy first in another city who after 2 visits decided that Rob had NOTHING wrong with him, despite the fact that he had hip effusions and couldnt' walk. Go figure. This current rheumy is the head of the pediatric rheumatology department at Cincinnati Children's, about 1-1/2 hours away from here. He is very conservative, but he is an excellent clinician. He has found subtle things going on with Rob that others have missed. He had suspicions that something was up with Rob's kidneys before the gross hematuria ever started. Tuesday, he actually thanked Rob for making his day, since his physical exam was soooo much better. He has scratched his head over Rob many a time, and we have never really had significant improvement in the arthritis until the Enbrel was started. So the rheumy was grinning from ear to ear! I have a card I bought today that I am going to send him to thank him for being so patient in working with Rob and figuring out the best course for him. I have so much gratitude for his excellent management of Rob's care. Rob is likely to be on the Enbrel for some time. Rob gives himself 2 injections of Enbrel weekly and 7 injections of growth hormone (1 daily). He gives them all himself. I was drawing up the Enbrel for him since we were using part of a vial at a time, but now he is on the whole vial so I am going to have him draw it up himself. The growth hormone is given with an injector device. Rob is excellent at giving his shots and never ever complains about them. When he started growth hormone, he was 13 and was 4'10 " and weighed only 78 lbs. They doubted he would get to 5 feet without the GH, the arthritis had stunted his growth so badly, and he was producing little growth hormone on his own. Now he is at 5'6 " and 126 lbs after 18 months on it! He is thrilled to be taller. Even if he grows little more he is still so happy to be taller than 5 feet. Lack of growth can also cause cardiac and other endocrine issues, and Rob had osteopenia as well, so the GH wasn't just for growth. But it sure is a nice side effect! Rob's nephro and I are on email. He is likely to email me when he has results and then we'll probably talk by phone. I like that better, as when we go for visits Rob is in the room and I don't like to get too realistic...and Dr. D. really watches what he says. I need to know the whole picture and then dispense the info slowly, as you are doing with your daughter. My mother died of breast cancer with mets to the lungs. I am so sorry for your own mother's illness. I am glad that you found someone to properly care for her when she was on the vent. Isn't it amazing the incompetent people who are out there? I see so much every day. It is my job to screen patients for acute rehab and make sure they are medically stable before they are transferred. I see so many things that are brushed aside or not taken seriously, especially in the elderly. I have angered a few docs when I go to bat and refuse to accept patients for transfer when they still have testing that needs to be done or issues addressed. It is my major pet peeve! But it is up to us to make sure that people who don't treat patients properly are called to the carpet. Bonnie, take care, and I hope that you are able to get some rest this weekend. Sorry about this long email!! , mom to Rob On Fri, 29 Oct 2004 17:04:17 -0700 (PDT) Bonnie Duran writes: Hi , Sorry it took me a day or so to respond, but I wanted to make sure I had enough time to jot you a few lines. Thanks so much again for all of your support and prayers. It's a bit of a trying time, but you know me, I stay so busy at work, that I don't have time to really dwell on it too much. The hardest thing with the swelling is not fitting into my pants, and just the heaviness, but oh well. Maybe I'm due for new clothes anyway? I know they are just trying to save kidney function by not increasing diuretic, so that's cool. I am ABSOLUTELY ELATED about Rob's blood work. My gosh, how great is that, No Protein, No blood. Double Awesome!!!!! Dr. Devarajan sounds so cool, giving Rob the " high 5 " , I bet Rob was overjoyed!! I am so glad the Cozaar is working well. I wonder what everyone did in the days before ACE i and ARB's. After Dr. Kashton reviews everything, do you guys all sit down together to discuss? Or does Dr. Devarajan discuss the findings of Dr. Kashtan? I can't imagine what it's like to discuss those heavy duty issues with Rob. I just can't imagine. It's hard enough for me to talk to Em about the hereditary component of Fabry's to her while she is expecting. I am going VERY VERY slowly. She knows a little about Fabry's, and the fact that if I do in fact have it, that it is hereditary, and effects the kidneys and other organs, but it is sooooo hard to tell her any details, unless I know for sure that in fact I test positive. I will tell her the results of the repeat alphagalactosidase level as soon as it comes back. Hopefully that will open up some discussion in this area. It will take another 2 - 3 weeks to get the alphagalactosidase level back, then the folks at Mount Sinai (Dana the research coordinator and Dr. Desnick the Fabry guru and anyone else on the team) get together and review the 21 page packet I had to complete, the kidney biopsy, dermatologist report on the angiokeratomas, Echo report, and 3 generation pedigree, then they decide at what level of " chance " I am to have the affected or mutant gene. Then if they think there is enough substantial evidence, then they proceed with DNA assay and Lymphoid Cell line (that was the other 13 vials of blood that I just sent them). Em and Bry want to know if it is a boy or a girl, and they go back to the OB doc next Tuesday, so that will also be a factor in how much and what info I give her and when, since the boys are affected more seriously, (end stage renal disease at age 20 - 30) I am nearly positive this will not affect her pregnancy, but may give them some time to decide regarding if the baby is a boy, if they want to pursue amiocentesis etc. to determine if in fact the boy has the gene as well. I am TICKLED PINK about Rob's success with Embrel. Is he injecting himself, or are you injecting for him? He is one very COOL son indeed. So optimistic. Did he get this characteristic from his Mom? Will the Embrel be long term, or will it put him in a " remission " , then can he go off for a while? Regarding the insensitivity of the " rheumy " as you say... This will change one day. I hope he is never faced with illness, nor anyone in his family, however if he does face that path one day, you know as well as I, he will become much more sensitive and compassionate in his care. I'm only sorry you guys had to bear the brunt of his insensitive question. And perhaps not what he asked, but how he asked it. He will learn wisdom, but it always comes with experience and the true desire to become humble. Sometimes it is hard as a patient or family member to accept each care provider in their journey in wisdom. I remember when my mom was dying and on a ventilator in the hospital, (breast CA with mets to the lung) and they were giving her a trial of weaning her off the vent, (directly from 100% O2 if you can imagine). Well the respiratory therapist went to lunch, and NONE of the nurses knew how to adjust the vent settings and put her back on. She went into resp. distress. I about lost it with them. I " balled " them out, and told them how incompetent they were, and they should never be responsible for a vent patient if they don't know what the heck their doing. Then I went down to the lunch room to talk to the resp. therapist. I then hired a private duty nurse to stay with her 24/7. She was GREAT. A recovery room nurse that I clearly remember to the day (20 years ago). Extrememly competent, and would let my mom have anything she wanted, gingerale, a bite of chocolate or whatever. I'll never forget her... It was a humbling experience for the incompetent nurses as well as myself. I had no idea I could be so assertive, but again, it was my mom. Just imagine if it was one of my kids..... Ahh yes, how to learn to be humble..... Bonnie P.S. Tell Rob I said howdy, and thanks for taking such good care of himself and his mom. (((smile))) & (((hugs))) snooksmama@... wrote: Bonnie: I continue to keep you in my prayers. This has got to be a tough time for you. I know that the swelling has got to be such a challenge in itself, with trying to work, not to mention the emotional part of dealing with everything. How long till you get the results on all the blood work you sent off?? No news from Dr. Kashtan yet. Yes, they sent the biopsy tissue samples.. It will be a few more weeks for results. We saw Dr. Devarajan on Tuesday. He was going to a nephrology convention in St. Louis on Wednesday, and was going to discuss Rob's case with Dr. Kashtan once more. At the visit, we had great news! The cozaar is working well, no blood or protein in Rob's urine at the visit! Talk about ecstatic! Dr. D. high-fived Rob after he looked at his urine. I was so glad. I didn't want the Cozaar dose to be raised as I know that it would be likely to cause some hypotension for Rob. He already gets lightheaded if he gets up too fast. We are praying that the Cozaar works for a long long time. Once the results are back from Dr. Kashtan, we'll sit down and discuss long term prognosis, I'm sure. Rob knows a little about the Alport's diagnosis, but I haven't told him everything yet. He does know that he faces the possibility of renal failure and dialysis and transplant. He told me that he is going to live his life one day at a time and not worry about that. Which I think is awesome! He also had a visit with rheumatology and his physical exam is soooo much better on his new drug, Enbrel. They increased his dose as he is now up to adult weight (126 lbs, and 5'6). We were discussing the Alport's diagnosis , and the rheumy blurts out " Does deafness run in the family? " And Rob said WHAT?? So we sort of brushed it off, and later I asked Rob what he thought about it, and he said that he was fine. I told him that there was a possiblity that he could have hearing problems later on, but that the hearing test the pediatrician ran in August was perfect, so we didn't need to worry about that now. And I know he won't ! He has the most amazing quality of being so upbeat and positive. I have learned so much from him. Bonnie, I hope that your swelling will ease soon. How is the new grandbaby coming along? , mom to Rob, 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2004 Report Share Posted November 1, 2004 Bonnie, You're welcome to join our Thanksgiving dinner! E-mail me off-line if you're interested or want my number for when you're here-call if you need anything! I am in the Twin Cities. ~Dana Re: Its me again Priya, I'm sorry, I can't really help you on the M spike either, perhaps Dave or others will be able to respond to this. But I wanted to welcome you to this great support system here. We are all in varying stages of Ig A and you will learn tons here from everyone. I had my biopsy in April of this year. I did not receive any " preop " medication. My neph was great, and I felt very comfortable with him. He explained the whole procedure twice to me (once in his office, then once right before the procedure when my husband was there). Steve went in the room with me at first, but then waited in the waiting room during the procedure. I think the most enlightening thing that they told me was about the " spring loaded " biopsy " needle " and the sound it makes which is a kinda loud click. They obtained 3 specimens for me, all of which were great quality. The procedure took about 40 minutes total maybe, and you will probably have an IV started before the procedure. I think several people on site have been premedicated before their procedure, but I have a pretty high pain threshold, (took only 3 aspirin for childbirth 20 years ago, but only because I had braces put on my teeth the same day and my teeth were sore, Hehehe, true!). I think my neph was afraid my BP would go way down after the procedure so he didn't want to take a chance, so didn't really want to give me any premed. I borrowed my son's MCD (correct initials?) player, and asked my neph if I could just block him and the other nurses out for awhile, and listen to music. Hehehe.... he thinks (knows?) I'm a nut.... he said " Sure " just as long as you can hear me say " Take a deep breath and hold it " . Anyway the jazz helped tons, I just concentrated on the music, and not anything else, and before I knew it, he was done. Perfect specimens every time. As Trent mentioned you lie down on your belly on the Xray table with a sand bag under your left mid abdomen. The neph will be gowned in surgical attire and will wear probably wear a mask. He will then wash the area off really well (usually at the left mid/lower back above your left hip area), then numbs the area first with a drug like you get at the dentists office. (Providing you have never been allergic to it in the past). This medicine burns a bit, but then numbs the skin and surrounding area pretty darn well. Then he will wait a little while before obtaining the biopsy, to let the medicine fully work to numb the area. They will darken the room a bit so they can see the ultasound screen well, (Looks like a T.V. screen). You can even watch the ultrasound portion of it if your neph lets you. He'll tell you to " take a deep breath and hold it " , a couple of times as he obtains the tissue from the kidney. I was a bit nervous, as I'm sure everyone else is too, especially the first time, but it is quick and the more you are able to relax, (like Trent said) the easier it will go. They usually do a repeat ultasound while you're still in the Xray room to check for any bleeding in the kidney, as it is a very vascular organ (full of blood vessels). You have to lie flat on your back for about 6 hours after the procedure with the sand bag directly at the site of the biopsy, to decrease any chance of bleeding. Some people go home the same day, others stay over night. My neph " warned " me even before the procedure, I would be staying overnight. (He knows me too well, and knew I'd be a hard one to keep down unless he hospitalized me). But I was kind glad I did stay overnight. I got wayyyyy nauseated and " dry heaves " when I tried some pain med about 12 hours after the procedure. But the nurses were very good, and gave me some antinausea meds through the IV, and that helped tons. I went home the following day by noon. I had a bit of a " hematoma " (bruise) in the kidney, but didn't really bother me much till the next day or two when I was back at work and was moderately swollen and a bit sore. You will not be able to lift anything heavy for awhile, and your neph will tell you how long. Perhaps a week or two. I am so glad you found this site before your biopsy. I unfortunately hadn't found it till after my biopsy, so didn't know hardly anything about what to expect when I went in. But like everyone will tell you, you will be greatly relieved when it's all done, and then you will wish you hadn't worried quite so much, cause it is not as bad as you anticipate it might be. Hope that helps a bit. Take good care! Ask any questions or vent any concerns here at all. Everyone is great! Bonnie kalyanav wrote: Hi, i am so sorry for posting messages this quickly, but I am so nervous abt this whole thing. I went to my neph today and he told me that I had to undergo a kidney biopsy. I am not sure how painful it is. Did anyone undergo a biopsy?? if so, is it painful??? Also, I have a high M-Spike...not sure what that really means...I have searched over the internet but couldn't find a link btw IgAN and M-Spike. If anyone knows ,pl let me know...I have never been this scared in my life...My protein level in the urine was falling initally(from 2.6gm to 1.06gm) and it is up again at 3.3gm...is this common that the protein can vary??? Thx once again. Priya 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 November 15, 2004 Report Share Posted November 15, 2004 Bonnie: I was just wondering how you are doing. I am having major computer problems (I use a 1996 'era' Compaq 'dinosaur' and it is just barely creeping along). I am trying to figure out a way to get a newer one, hopefully soon. I haven't been able to keep up with posts for that reason. I was wondering if your swelling has gotten any better. Also if you heard any more from Mayo. I know that you go there next week. Rob had strep throat, sinus infection and bronchitis last week. I expected the hematuria to reappear, but he swears it hasn't! Guess the Cozaar is doing its job. , mom to Rob, 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Hi , Isn't it frustrating how quickly computer technology goes out of date? I hope you can get a new computer soon. I wanted to say I am sorry Rob got so sick with Strept, sinus infection and bronchitis, but wow is that great news that he managed to not have a flare up with it! That is fantastic news. I do hope he is feeling much better. In a message dated 11/15/2004 9:01:50 PM Pacific Standard Time, snooksmama@... writes: > Bonnie: > I was just wondering how you are doing. I am having major computer problems > (I use a 1996 'era' Compaq 'dinosaur' and it is just barely creeping along). > I am trying to figure out a way to get a newer one, hopefully soon. I haven't > been able to keep up with posts for that reason. I was wondering if your > swelling has gotten any better. Also if you heard any more from Mayo. I know > that you go there next week. > Rob had strep throat, sinus infection and bronchitis last week. I expected > the hematuria to reappear, but he swears it hasn't! Guess the Cozaar is doing > its job. > , mom to Rob, 15 Quote Link to comment Share on other sites More sharing options...
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