Guest guest Posted May 13, 2001 Report Share Posted May 13, 2001 Kim -- Our immuno is Dr. Prudence Krieger, the head of ped infectious diseases and immunology at Lutheran General Hospital. She seems smart but she is extremely practical and blunt. I don't think I realized there was anyone on the list from this area -- where do you live again? Who do you see? Because if Dr. Krieger ticks me off again we might be looking for a change!!!!! Can I ask what 's history was like? You can post privately if you think it will be too long for the group. I'm just eager for knowledge of anyone who's been down a similar road. Did Jess start off with more deficits and settle into her current (because they thought was " worse " off when she was younger but she has seen nice improvement in her IgG)? Has she had any life-threatening illnesses from polysaccharide antigens (and which ones)? Has she ever had reactions to IVIG? Have I asked enough questions? Thanks- (mom to , age 2, polysaccharide antibody def, IgA def) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 , This meningitis thing has definitely got me in a panic. My neighbors Neuro was concerned for us and Children's hospital was also. But I have to say, I am worried about all of us. I took care of her daughter (not in my house, in hers), I let her dog out and I did her dishes when she was in the hospital. (I don't know what I was thinking, I guess I wasn't). As I said previously, they are going to up his IVIG dose a bit for added protection. He said I will be out of the woods three weeks from the last direct exposure with Chris...that was last Friday. So for the next two weeks, the panic state stays. I guess over time, as I see how he responds to his IVIG and being back in school, my panic level will change (hopefully). But as with any chronic illness or problem with your child, it's your baby and we will all worry, always. Thanks to everyone for the support. I needed it. Kim - Mom to Nick, (XLA?/CVID?) and Re: Kim > In a message dated 9/8/01 12:18:41 PM Central Daylight Time, > knmb2@... writes: > << > Maybe it gets easier after a few years of dealing with this, but I walk > around thinking if he gets sick, he will die... > ...I feel like he is a live experiment. I guess in a way he is. > >> > > Oh, Kim, I caught my breath when I read that because that's EXACTLY how I > feel! We almost lost to bacterial meningitis and since she has antibody > problems with that kind of bacteria (strep-pneumo) we live in fear she'll get > it again and not be so lucky next time (even though -knockwoodknockwood- we > hopefully will only draw that card once in this lifetime). > > And we've swung back and forth so much on protecting and not... she was > preemie so we had to keep her isolated, then they said she could do anything > and we put her in daycare and she got meningitis. Then we found out she had a > PID and we had to isolate her until they could figure out how serious is was > or not. Then we had to protect but not totally isolate. Then when some #s > looked bad, isolate again. Then just this May the immuno said to let her do > anything at all except daycare/preschool. And she's been sick ever since. YES > I'M VENTING! > > Sometimes I feel like " panic " is our normal state. And we'll have a week > where she's completely healthy and all of a sudden I'll have this FEELING > like something's different. And I'll realize it's that I'm more relaxed. I'm > not pumping adrenaline and fear watching a big fever thinking, " Is this one > the one that catches us offguard? " > > And our immuno has flip flopped on us multiple times. Last November she gave > us the option of IVIG and we said we wanted to wait until we looked at her > 2yr numbers, and she acted like we were making a big mistake. Then in May > after 827 more illnesses ()) we ASSUMED she'd still give us that option, > and instead she said it was not an option, is not a candidate because > her IgG came up. Yes, it did come up and we're happy about that, but she is > getting sick more than ever! > > Anyway, I think you're doing the right thing in going by instinct. I'd rather > err on the side of caution and never have regrets. My husband didn't think > needed to go to the doctor the morning she had meningitis (well, how on > earth could he know?) but my instinct overruled. In some ways he still > doesn't forgive himself to this day, even though it turned out just fine!!! > (sheesh. MEN!) Heehee. So go with your gut. > > Sorry so long...your words just struck a chord with me. > > (mom to , age 2, polysaccharide antibody def, IgA def) > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 , This meningitis thing has definitely got me in a panic. My neighbors Neuro was concerned for us and Children's hospital was also. But I have to say, I am worried about all of us. I took care of her daughter (not in my house, in hers), I let her dog out and I did her dishes when she was in the hospital. (I don't know what I was thinking, I guess I wasn't). As I said previously, they are going to up his IVIG dose a bit for added protection. He said I will be out of the woods three weeks from the last direct exposure with Chris...that was last Friday. So for the next two weeks, the panic state stays. I guess over time, as I see how he responds to his IVIG and being back in school, my panic level will change (hopefully). But as with any chronic illness or problem with your child, it's your baby and we will all worry, always. Thanks to everyone for the support. I needed it. Kim - Mom to Nick, (XLA?/CVID?) and Re: Kim > In a message dated 9/8/01 12:18:41 PM Central Daylight Time, > knmb2@... writes: > << > Maybe it gets easier after a few years of dealing with this, but I walk > around thinking if he gets sick, he will die... > ...I feel like he is a live experiment. I guess in a way he is. > >> > > Oh, Kim, I caught my breath when I read that because that's EXACTLY how I > feel! We almost lost to bacterial meningitis and since she has antibody > problems with that kind of bacteria (strep-pneumo) we live in fear she'll get > it again and not be so lucky next time (even though -knockwoodknockwood- we > hopefully will only draw that card once in this lifetime). > > And we've swung back and forth so much on protecting and not... she was > preemie so we had to keep her isolated, then they said she could do anything > and we put her in daycare and she got meningitis. Then we found out she had a > PID and we had to isolate her until they could figure out how serious is was > or not. Then we had to protect but not totally isolate. Then when some #s > looked bad, isolate again. Then just this May the immuno said to let her do > anything at all except daycare/preschool. And she's been sick ever since. YES > I'M VENTING! > > Sometimes I feel like " panic " is our normal state. And we'll have a week > where she's completely healthy and all of a sudden I'll have this FEELING > like something's different. And I'll realize it's that I'm more relaxed. I'm > not pumping adrenaline and fear watching a big fever thinking, " Is this one > the one that catches us offguard? " > > And our immuno has flip flopped on us multiple times. Last November she gave > us the option of IVIG and we said we wanted to wait until we looked at her > 2yr numbers, and she acted like we were making a big mistake. Then in May > after 827 more illnesses ()) we ASSUMED she'd still give us that option, > and instead she said it was not an option, is not a candidate because > her IgG came up. Yes, it did come up and we're happy about that, but she is > getting sick more than ever! > > Anyway, I think you're doing the right thing in going by instinct. I'd rather > err on the side of caution and never have regrets. My husband didn't think > needed to go to the doctor the morning she had meningitis (well, how on > earth could he know?) but my instinct overruled. In some ways he still > doesn't forgive himself to this day, even though it turned out just fine!!! > (sheesh. MEN!) Heehee. So go with your gut. > > Sorry so long...your words just struck a chord with me. > > (mom to , age 2, polysaccharide antibody def, IgA def) > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Kim - from what we've been told as a PID family and from what I've been told as a health care worker, viral meningitis is not contagious. And with bacterial meningitis the only one that is contagious is the meningococcal. We treated many children in the PICU with bad cases of viral and I had no worries of taking it home to Macey. I was exempt from the rooms with the meningococcal confirmed cases though. I hope your neighbors child feels better soon. If he is suffering nearly as much as the PID pumpkins who get it with their IVIG infusions then he must be in a great deal of pain. Ursula Holleman uahollem@... and Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Kim - from what we've been told as a PID family and from what I've been told as a health care worker, viral meningitis is not contagious. And with bacterial meningitis the only one that is contagious is the meningococcal. We treated many children in the PICU with bad cases of viral and I had no worries of taking it home to Macey. I was exempt from the rooms with the meningococcal confirmed cases though. I hope your neighbors child feels better soon. If he is suffering nearly as much as the PID pumpkins who get it with their IVIG infusions then he must be in a great deal of pain. Ursula Holleman uahollem@... and Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 Kim is 700 his absolute neutrophil count (ANC)? Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://maceyh.home.att.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 Kim, There is a child at my church who has taken neupogen for neutropenia. She did great with it. She was given a shot every so often (once a month I think)for about 6 months and she was able to stop after that. She has been healthy as a horse ever since. I'd be glad to ask her mom questions, if you'd like, just let me know. Kristie From: bunneegirl@... Reply-To: PedPID To: PedPID Subject: Re: Kim Date: Mon, 17 Sep 2001 16:51:34 EDT Kim: I freely admit I have NO IDEA what I'm talking about here, but haven't I heard of something called " neupogen " that they can give Graham for neutropenia? I have no clue about it but remembered someone talking about it awhile back. I'm just hoping there's something they can do and I feel for you, knowing he's so vulnerable. (mom to , age 2-1/2, polysaccharide antibody def, IgA def) This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 Kim, There is a child at my church who has taken neupogen for neutropenia. She did great with it. She was given a shot every so often (once a month I think)for about 6 months and she was able to stop after that. She has been healthy as a horse ever since. I'd be glad to ask her mom questions, if you'd like, just let me know. Kristie From: bunneegirl@... Reply-To: PedPID To: PedPID Subject: Re: Kim Date: Mon, 17 Sep 2001 16:51:34 EDT Kim: I freely admit I have NO IDEA what I'm talking about here, but haven't I heard of something called " neupogen " that they can give Graham for neutropenia? I have no clue about it but remembered someone talking about it awhile back. I'm just hoping there's something they can do and I feel for you, knowing he's so vulnerable. (mom to , age 2-1/2, polysaccharide antibody def, IgA def) This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 Kim, There is a child at my church who has taken neupogen for neutropenia. She did great with it. She was given a shot every so often (once a month I think)for about 6 months and she was able to stop after that. She has been healthy as a horse ever since. I'd be glad to ask her mom questions, if you'd like, just let me know. Kristie From: bunneegirl@... Reply-To: PedPID To: PedPID Subject: Re: Kim Date: Mon, 17 Sep 2001 16:51:34 EDT Kim: I freely admit I have NO IDEA what I'm talking about here, but haven't I heard of something called " neupogen " that they can give Graham for neutropenia? I have no clue about it but remembered someone talking about it awhile back. I'm just hoping there's something they can do and I feel for you, knowing he's so vulnerable. (mom to , age 2-1/2, polysaccharide antibody def, IgA def) This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Kim, I hope that your second injection will be a little easier for you today and that you won't be so sick. Sending pleasant thoughts your way this morning. I will be thinking of you friend. Love, Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Kim, I hope that your second injection will be a little easier for you today and that you won't be so sick. Sending pleasant thoughts your way this morning. I will be thinking of you friend. Love, Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Thank you Sue #2...so far this one has not been as bad. I'll let you know as the day goes on. I've managed to get the second round of tapes out and catch up on a few emails. Love, kim Re: kim Kim, I hope that your second injection will be a little easier for you today and that you won't be so sick. Sending pleasant thoughts your way this morning. I will be thinking of you friend. Love, Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Thank you Sue #2...so far this one has not been as bad. I'll let you know as the day goes on. I've managed to get the second round of tapes out and catch up on a few emails. Love, kim Re: kim Kim, I hope that your second injection will be a little easier for you today and that you won't be so sick. Sending pleasant thoughts your way this morning. I will be thinking of you friend. Love, Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Kim, I am glad that you are having a better time of it today, and I got the confirmation for the video, so I will be looking out for it. THANK YOU!!! Be good to yourself tonight. Love, Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2002 Report Share Posted January 5, 2002 aaahhhh! I see...that could be a problem because once a conversation is started then it just keeps going unless EVERYONE knows it is to be moved to a private conversation....and even then....not everyone reads every email and so on....wow....It's just too bad when that happens because it gets so nasty. You know? Love, Kim --- SaavyN@... wrote: > In a message dated 1/5/02 8:36:16 PM Eastern > Standard Time, > golightlyfredd@... writes: > > << I think someone (maybe > on the board) needs to step in and say " move it to > private conversation " when things get heated. >> > Maybe the board already has and you just don't know > it---because it was moved > to a private conversation.???? However, keeping it > a private conversation is > yet another task at hand. ;-) > Love, K > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2002 Report Share Posted January 5, 2002 aaahhhh! I see...that could be a problem because once a conversation is started then it just keeps going unless EVERYONE knows it is to be moved to a private conversation....and even then....not everyone reads every email and so on....wow....It's just too bad when that happens because it gets so nasty. You know? Love, Kim --- SaavyN@... wrote: > In a message dated 1/5/02 8:36:16 PM Eastern > Standard Time, > golightlyfredd@... writes: > > << I think someone (maybe > on the board) needs to step in and say " move it to > private conversation " when things get heated. >> > Maybe the board already has and you just don't know > it---because it was moved > to a private conversation.???? However, keeping it > a private conversation is > yet another task at hand. ;-) > Love, K > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 Don't you love having that kind of relationship with your doctor. That's what I have with Dr. Murray. He's wonderful, as is his whole family. Thank you for the encouragement. I look forward to having that kind of relationship with my Rheumy...whomever that may be in the end. Dr. Cush is very much that way. He really listens and we are building quite a good repoire. I think if you tell your Rheumy that you just want a consultation visit with Dr. Cush...not that you doubt the treatment that he is giving you, but you would just like to share your case with Dr. Cush...that he will respond in a positive way. Dr. Cush is very good about talking to other Dr.'s and his patients...he's so down to earch. Dr. Murray, my PCP was shocked that Dr. Cush even returns calls. He thought someone of his notiriaty would have a no call policy...or have residence return calls. Have a great Sunday and I'm gonna write you to your personal email....in a bit. Just to catch up on some things...thanks for being such a great friend. Love, Kim --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 Don't you love having that kind of relationship with your doctor. That's what I have with Dr. Murray. He's wonderful, as is his whole family. Thank you for the encouragement. I look forward to having that kind of relationship with my Rheumy...whomever that may be in the end. Dr. Cush is very much that way. He really listens and we are building quite a good repoire. I think if you tell your Rheumy that you just want a consultation visit with Dr. Cush...not that you doubt the treatment that he is giving you, but you would just like to share your case with Dr. Cush...that he will respond in a positive way. Dr. Cush is very good about talking to other Dr.'s and his patients...he's so down to earch. Dr. Murray, my PCP was shocked that Dr. Cush even returns calls. He thought someone of his notiriaty would have a no call policy...or have residence return calls. Have a great Sunday and I'm gonna write you to your personal email....in a bit. Just to catch up on some things...thanks for being such a great friend. Love, Kim --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 Don't you love having that kind of relationship with your doctor. That's what I have with Dr. Murray. He's wonderful, as is his whole family. Thank you for the encouragement. I look forward to having that kind of relationship with my Rheumy...whomever that may be in the end. Dr. Cush is very much that way. He really listens and we are building quite a good repoire. I think if you tell your Rheumy that you just want a consultation visit with Dr. Cush...not that you doubt the treatment that he is giving you, but you would just like to share your case with Dr. Cush...that he will respond in a positive way. Dr. Cush is very good about talking to other Dr.'s and his patients...he's so down to earch. Dr. Murray, my PCP was shocked that Dr. Cush even returns calls. He thought someone of his notiriaty would have a no call policy...or have residence return calls. Have a great Sunday and I'm gonna write you to your personal email....in a bit. Just to catch up on some things...thanks for being such a great friend. Love, Kim --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 Kim, I don't know about this Rheumy where you live, but I don't like the sounds of him, and you know from the experiences that I have had up here, it was almost the same type of attitude until I approached him on his thinking and put him right on the spot. YES...one would think, that a doctor would want to act as a " team " with another doctor and converse upon your disease, but it doesn't sound like that in this case, and it really doesn't sound like this doctor knows much about Stills at all or could be totally the opposite and he does know a lot about it, but his " ego " comes first, before his patients. I feel if he was really up on Stills, he would welcome Dr. Cush with open arms and be very happy that you are seeing him. I would go in and have an open conversation with him Kim about your feelings and the need for Dr. Cush in your life as well through this disease, and why you feel that it is important that you have both doctors helping you together and that they do work as a team, but if he fails to do so or gives you some type of attitude, then I would be upfront and honest with him and say my " good-byes " and be on my way. I think that possibly I would search elsewhere for a new Rheumy closer to you for the in-between months of Dr. Cush, but I am sure that you have done the long searching as I have done, and are probably starting to run out of good, secure choices in your area or surrounding towns. Remember, you are going through this disease, not him, and it's so hard to be taking all of these drugs at such a young age...doesn't he see that? I had really got upset with my Rheumy because I didn't think that he was approaching things fast enough, but when I went in and sat down and had a heart to heart talk with him, he made me understand why we aren't jumping in as fast as I would like, and I understood more. Mostly, because I am young yet, and he doesn't want to see my organs hurt at such a young age, since I have already had bad kidney and bladder problems. He feels that the body is still re-cooperating and needs them to heal some more before I start these drugs, so he is trying other things in the meantime, hoping that my body will respond. My body went through intense surgeries and it is just starting to come back fine now, so he is trying to give my kidneys a rest and is worried about my liver as well, so we are approaching things a little slower than I would like, but I will say that after he explained things to me and really sat down and looked into my eyes and he let my " cry " and express my feelings, I think that he very much understood me and my feelings and I understood him as well and a new respect came over both of us, and I feel that your rheumy should be doing the same Kim. It sounds like his " ego " is just a little bent in the wrong direction. Kim, I know it's so hard to find a new doctor, it's so frustrating, but it doesn't sound too good right now friend. Keep me posted Kim....how frustrating! Love you. Love, sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 Kim, I don't know about this Rheumy where you live, but I don't like the sounds of him, and you know from the experiences that I have had up here, it was almost the same type of attitude until I approached him on his thinking and put him right on the spot. YES...one would think, that a doctor would want to act as a " team " with another doctor and converse upon your disease, but it doesn't sound like that in this case, and it really doesn't sound like this doctor knows much about Stills at all or could be totally the opposite and he does know a lot about it, but his " ego " comes first, before his patients. I feel if he was really up on Stills, he would welcome Dr. Cush with open arms and be very happy that you are seeing him. I would go in and have an open conversation with him Kim about your feelings and the need for Dr. Cush in your life as well through this disease, and why you feel that it is important that you have both doctors helping you together and that they do work as a team, but if he fails to do so or gives you some type of attitude, then I would be upfront and honest with him and say my " good-byes " and be on my way. I think that possibly I would search elsewhere for a new Rheumy closer to you for the in-between months of Dr. Cush, but I am sure that you have done the long searching as I have done, and are probably starting to run out of good, secure choices in your area or surrounding towns. Remember, you are going through this disease, not him, and it's so hard to be taking all of these drugs at such a young age...doesn't he see that? I had really got upset with my Rheumy because I didn't think that he was approaching things fast enough, but when I went in and sat down and had a heart to heart talk with him, he made me understand why we aren't jumping in as fast as I would like, and I understood more. Mostly, because I am young yet, and he doesn't want to see my organs hurt at such a young age, since I have already had bad kidney and bladder problems. He feels that the body is still re-cooperating and needs them to heal some more before I start these drugs, so he is trying other things in the meantime, hoping that my body will respond. My body went through intense surgeries and it is just starting to come back fine now, so he is trying to give my kidneys a rest and is worried about my liver as well, so we are approaching things a little slower than I would like, but I will say that after he explained things to me and really sat down and looked into my eyes and he let my " cry " and express my feelings, I think that he very much understood me and my feelings and I understood him as well and a new respect came over both of us, and I feel that your rheumy should be doing the same Kim. It sounds like his " ego " is just a little bent in the wrong direction. Kim, I know it's so hard to find a new doctor, it's so frustrating, but it doesn't sound too good right now friend. Keep me posted Kim....how frustrating! Love you. Love, sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 Kim, I don't know about this Rheumy where you live, but I don't like the sounds of him, and you know from the experiences that I have had up here, it was almost the same type of attitude until I approached him on his thinking and put him right on the spot. YES...one would think, that a doctor would want to act as a " team " with another doctor and converse upon your disease, but it doesn't sound like that in this case, and it really doesn't sound like this doctor knows much about Stills at all or could be totally the opposite and he does know a lot about it, but his " ego " comes first, before his patients. I feel if he was really up on Stills, he would welcome Dr. Cush with open arms and be very happy that you are seeing him. I would go in and have an open conversation with him Kim about your feelings and the need for Dr. Cush in your life as well through this disease, and why you feel that it is important that you have both doctors helping you together and that they do work as a team, but if he fails to do so or gives you some type of attitude, then I would be upfront and honest with him and say my " good-byes " and be on my way. I think that possibly I would search elsewhere for a new Rheumy closer to you for the in-between months of Dr. Cush, but I am sure that you have done the long searching as I have done, and are probably starting to run out of good, secure choices in your area or surrounding towns. Remember, you are going through this disease, not him, and it's so hard to be taking all of these drugs at such a young age...doesn't he see that? I had really got upset with my Rheumy because I didn't think that he was approaching things fast enough, but when I went in and sat down and had a heart to heart talk with him, he made me understand why we aren't jumping in as fast as I would like, and I understood more. Mostly, because I am young yet, and he doesn't want to see my organs hurt at such a young age, since I have already had bad kidney and bladder problems. He feels that the body is still re-cooperating and needs them to heal some more before I start these drugs, so he is trying other things in the meantime, hoping that my body will respond. My body went through intense surgeries and it is just starting to come back fine now, so he is trying to give my kidneys a rest and is worried about my liver as well, so we are approaching things a little slower than I would like, but I will say that after he explained things to me and really sat down and looked into my eyes and he let my " cry " and express my feelings, I think that he very much understood me and my feelings and I understood him as well and a new respect came over both of us, and I feel that your rheumy should be doing the same Kim. It sounds like his " ego " is just a little bent in the wrong direction. Kim, I know it's so hard to find a new doctor, it's so frustrating, but it doesn't sound too good right now friend. Keep me posted Kim....how frustrating! Love you. Love, sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 Kim I am sorry, I don't know any information about massage and fever, but I am sure that someone will have an answer for you. I am worried about you and will check on you late today to see how you are feeling. Remember to get plenty of rest so you don't go into a huge " flare " . Be well friend and I will talk to you later. Love, Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 Kim I am sorry, I don't know any information about massage and fever, but I am sure that someone will have an answer for you. I am worried about you and will check on you late today to see how you are feeling. Remember to get plenty of rest so you don't go into a huge " flare " . Be well friend and I will talk to you later. Love, Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 Kim I am sorry, I don't know any information about massage and fever, but I am sure that someone will have an answer for you. I am worried about you and will check on you late today to see how you are feeling. Remember to get plenty of rest so you don't go into a huge " flare " . Be well friend and I will talk to you later. Love, Sue #2 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.