Guest guest Posted March 4, 2002 Report Share Posted March 4, 2002 > > Ok, I've not felt good all day long. Tried to get up and move around > but that makes it worse. I get short of breath doing the least little > thing. Tonight while sitting up in bed I took my blood pressure because > I felt like my heart was racing... > It was: > > Blood Pressure: 141/68 > Pulse rate: 102 > > I think that pulse rate is high...don't you? > > Vicki Hi Vicki, I had the same breathless, painful, weak day too. Sorry you're feeling so bad! NO, I DON " T THINK 102 IS HIGH, TO WORRY ABOUT. [When I was in danger, I faxed my blood pressure every hr, to my Cardiologist and Rheumy. often it was over 120.] But. If it worries you, I say CALL THE DR.!! Why we feel so bad seems to me to be the main concern1st. God Bless! I'm feeling congested, sore throat, NOT good. It has been 2 mos. since I had Pneumonia last. I go for an IVIG on the 7th. Can I hold on? I'm tryin'! Janie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2002 Report Share Posted March 4, 2002 > > Ok, I've not felt good all day long. Tried to get up and move around > but that makes it worse. I get short of breath doing the least little > thing. Tonight while sitting up in bed I took my blood pressure because > I felt like my heart was racing... > It was: > > Blood Pressure: 141/68 > Pulse rate: 102 > > I think that pulse rate is high...don't you? > > Vicki Hi Vicki, I had the same breathless, painful, weak day too. Sorry you're feeling so bad! NO, I DON " T THINK 102 IS HIGH, TO WORRY ABOUT. [When I was in danger, I faxed my blood pressure every hr, to my Cardiologist and Rheumy. often it was over 120.] But. If it worries you, I say CALL THE DR.!! Why we feel so bad seems to me to be the main concern1st. God Bless! I'm feeling congested, sore throat, NOT good. It has been 2 mos. since I had Pneumonia last. I go for an IVIG on the 7th. Can I hold on? I'm tryin'! Janie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2002 Report Share Posted March 4, 2002 > > Ok, I've not felt good all day long. Tried to get up and move around > but that makes it worse. I get short of breath doing the least little > thing. Tonight while sitting up in bed I took my blood pressure because > I felt like my heart was racing... > It was: > > Blood Pressure: 141/68 > Pulse rate: 102 > > I think that pulse rate is high...don't you? > > Vicki Hi Vicki, I had the same breathless, painful, weak day too. Sorry you're feeling so bad! NO, I DON " T THINK 102 IS HIGH, TO WORRY ABOUT. [When I was in danger, I faxed my blood pressure every hr, to my Cardiologist and Rheumy. often it was over 120.] But. If it worries you, I say CALL THE DR.!! Why we feel so bad seems to me to be the main concern1st. God Bless! I'm feeling congested, sore throat, NOT good. It has been 2 mos. since I had Pneumonia last. I go for an IVIG on the 7th. Can I hold on? I'm tryin'! Janie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2002 Report Share Posted March 4, 2002 I think the pulse is ok, but the BP is a little weird, don't you think? So sorry you are not feeling well...the shortness of breath doesn't sound too good. Tell me, mother hen, you are so good at dispensing good advice like " Call your doctor, " are you going to practice what you preach? Please, Vicki, all teasing aside...call the doc today and let us know how you are! Hugs, Lynn --- anzavic@... wrote: > > Ok, I've not felt good all day long. Tried to get > up and move around > but that makes it worse. I get short of breath > doing the least little > thing. Tonight while sitting up in bed I took my > blood pressure because > I felt like my heart was racing... > It was: > > Blood Pressure: 141/68 > Pulse rate: 102 > > I think that pulse rate is high...don't you? > > Vicki > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2002 Report Share Posted March 4, 2002 Yes Vicki that pulse is high. How are you doing today? Cari >From: anzavic@... >Reply-To: OurMyositis >To: OurMyositis >Subject: Question >Date: Sun, 3 Mar 2002 19:29:32 -0800 (PST) > > >Ok, I've not felt good all day long. Tried to get up and move around >but that makes it worse. I get short of breath doing the least little >thing. Tonight while sitting up in bed I took my blood pressure because >I felt like my heart was racing... >It was: > >Blood Pressure: 141/68 >Pulse rate: 102 > >I think that pulse rate is high...don't you? > >Vicki > > > _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2002 Report Share Posted March 4, 2002 Vicki - I hope you're feeling better today. I've been experiencing the same exact thing. Very short of breath and very rapid heart beat. Also in a lot of pain. I sympathize with you, girlfriend. ((((((hugs))))) Dawn anzavic@... wrote: > Ok, I've not felt good all day long. Tried to get up and move around > but that makes it worse. I get short of breath doing the least little > thing. Tonight while sitting up in bed I took my blood pressure because > I felt like my heart was racing... > It was: > > Blood Pressure: 141/68 > Pulse rate: 102 > > I think that pulse rate is high...don't you? > > Vicki > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2002 Report Share Posted March 4, 2002 Janie, I think if I started undressing in Target, the customers would be running for the hills. LOL I may lose them a lot of business. They may sue!!!!! But what afunny mental image!!! And pantyhose.......................can't even get them on let alone off!!!!! zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2003 Report Share Posted December 6, 2003 Hi , A very warm welcome to you and Jeff. I must say that Jeff is very blessed to have a spouse interested enough to be on this site. We do have a handful of spouses, but most members are patients or parents. I am sorry Jeff has been diagnosed with IgAN, but I hope and pray that he is one who goes with the odds and never reaches end stage renal disease. Welcome again, and my hat goes off to you for being an involved and supportive spouse! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2003 Report Share Posted December 6, 2003 Hi Jeff, My husband was told " something " was wrong back in February after a routine medical, by August we were told it was Cancer of the Bladder and he was in for a cytoscopy - which found nothing. In October it was time for a renal biopsy and he was diagnosed with IGAN, very early stages by the way his numbers look - we walked away from the Nephropaths office, smiling our heads off, and very relieved that that " was all it was! " . So far all they have done is change his Blood Pressure medication to ACE Inhibitors, he remains on the same Cholesterol meds that he has taken for years. The symptoms have all been there for years, he has been treated for Blood Pressure and Cholesterol, the Neph agrees he has probably had it for years and that it is chronic, but very treatable, at this stage they are saying the worst case scenario is dialysis in 10 years or more, as I said this diagnosis was preferable to the initial cancer one, so finding out he had it whilst a little scary it was the better of the original one. With the way things move with research etc we are also confident of the prognosis improving as time goes on, he is back to the Neph in January to see how the new medication is working. He is slowly increasing the dose and I must say one side effect I notice after he increases it is a high after taking it, but after a few hours he can get rather grumpy, this goes on for a few days and then it seems to stabilise. Cheers Message: 8 Date: Thu, 04 Dec 2003 05:09:40 -0000 Subject: Question Was anyone initially told that they had something other than IGAN, such as a prostrate infection, even with gross haematuria (+4), proteinuria (+2), and elevated creatinine (1.5 up from .9 3 years later) present after multiple visits? Jeff Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2003 Report Share Posted December 6, 2003 , That story sounds familiar, although I haven't had a biopsy so I'm suspected. Dr's main concern was ruling out cancer .... hence the cytoscopy, xrays and ultrasound scans I had. I guess the roller coaster part for me was months later we have a neph's opinion - it's described to me so lightly that it seems no worse than a viral infection, and i leave office feeling elated ... potential cancer gone ... just some minor irritation, then I start my research and it's a little bit back downhill!! Monday should give an idea of how far downhill I guess although I've been thinking about that too - I could have only a little reduction in kidney function - and had this thing only a while or a lot and had this thing years so I suppose it'll be sometime before I have a real feel for where I am! Ho hum!! So, did your hubby get popcorn at his cytoscopy? Dave Re: Question Hi Jeff, My husband was told " something " was wrong back in February after a routine medical, by August we were told it was Cancer of the Bladder and he was in for a cytoscopy - which found nothing. In October it was time for a renal biopsy and he was diagnosed with IGAN, very early stages by the way his numbers look - we walked away from the Nephropaths office, smiling our heads off, and very relieved that that " was all it was! " . So far all they have done is change his Blood Pressure medication to ACE Inhibitors, he remains on the same Cholesterol meds that he has taken for years. The symptoms have all been there for years, he has been treated for Blood Pressure and Cholesterol, the Neph agrees he has probably had it for years and that it is chronic, but very treatable, at this stage they are saying the worst case scenario is dialysis in 10 years or more, as I said this diagnosis was preferable to the initial cancer one, so finding out he had it whilst a little scary it was the better of the original one. With the way things move with research etc we are also confident of the prognosis improving as time goes on, he is back to the Neph in January to see how the new medication is working. He is slowly increasing the dose and I must say one side effect I notice after he increases it is a high after taking it, but after a few hours he can get rather grumpy, this goes on for a few days and then it seems to stabilise. Cheers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 I'm not exactly sure but the pill your neph may be referring to is CellCept. It supressed the imune system. I've been taking it since January 1st and it has been working very well for me. Previously I had been on high doses of prednisone, which didn't not help me much. Rita Is the CellCept a form of Chemo? Someone mentioned to me that if he took a Chemo pill it would cause him to be sterile?????? Thanks for your reply! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 I'm not exactly sure but the pill your neph may be referring to is CellCept. It supressed the imune system. I've been taking it since January 1st and it has been working very well for me. Previously I had been on high doses of prednisone, which didn't not help me much. Rita Is the CellCept a form of Chemo? Someone mentioned to me that if he took a Chemo pill it would cause him to be sterile?????? Thanks for your reply! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 I'm not exactly sure but the pill your neph may be referring to is CellCept. It supressed the imune system. I've been taking it since January 1st and it has been working very well for me. Previously I had been on high doses of prednisone, which didn't not help me much. Rita Is the CellCept a form of Chemo? Someone mentioned to me that if he took a Chemo pill it would cause him to be sterile?????? Thanks for your reply! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 Thank you Pierre! I totally had this cancer chemotherapy drug in my brain. I'm thinking my son will lose his hair, lose his ability to father children, be sooooooooo sick, etc. His Neph has just done a HORRIBLE job at explaining anything to us. Thank God for this group!!!! They refer to these kinds of pills as chemotherapy, but don't get too caught up with that word. It's nothing like chemotherapy for cancer. It's an immune system suppressant that sometimes helps calm down the inflammation in the kidneys that leads to heavy proteinuria. It's not too different in concept than being on prednisone, except the side effects are probably less for most people (from what I've heard, as I've never been on any of these drugs myself). It's often part of the drug cocktail kidney tranplant recipients have to take. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 Thank you Pierre! I totally had this cancer chemotherapy drug in my brain. I'm thinking my son will lose his hair, lose his ability to father children, be sooooooooo sick, etc. His Neph has just done a HORRIBLE job at explaining anything to us. Thank God for this group!!!! They refer to these kinds of pills as chemotherapy, but don't get too caught up with that word. It's nothing like chemotherapy for cancer. It's an immune system suppressant that sometimes helps calm down the inflammation in the kidneys that leads to heavy proteinuria. It's not too different in concept than being on prednisone, except the side effects are probably less for most people (from what I've heard, as I've never been on any of these drugs myself). It's often part of the drug cocktail kidney tranplant recipients have to take. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 They refer to these kinds of pills as chemotherapy, but don't get too caught up with that word. It's nothing like chemotherapy for cancer. It's an immune system suppressant that sometimes helps calm down the inflammation in the kidneys that leads to heavy proteinuria. It's not too different in concept than being on prednisone, except the side effects are probably less for most people (from what I've heard, as I've never been on any of these drugs myself). It's often part of the drug cocktail kidney tranplant recipients have to take. Pierre Re: Question > > I'm not exactly sure but the pill your neph may be referring to is CellCept. > It supressed the imune system. I've been taking it since January 1st and it > has been working very well for me. Previously I had been on high doses of > prednisone, which didn't not help me much. Rita > Is the CellCept a form of Chemo? Someone mentioned to me that if he took a > Chemo pill it would cause him to be sterile?????? > Thanks for your reply! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 They refer to these kinds of pills as chemotherapy, but don't get too caught up with that word. It's nothing like chemotherapy for cancer. It's an immune system suppressant that sometimes helps calm down the inflammation in the kidneys that leads to heavy proteinuria. It's not too different in concept than being on prednisone, except the side effects are probably less for most people (from what I've heard, as I've never been on any of these drugs myself). It's often part of the drug cocktail kidney tranplant recipients have to take. Pierre Re: Question > > I'm not exactly sure but the pill your neph may be referring to is CellCept. > It supressed the imune system. I've been taking it since January 1st and it > has been working very well for me. Previously I had been on high doses of > prednisone, which didn't not help me much. Rita > Is the CellCept a form of Chemo? Someone mentioned to me that if he took a > Chemo pill it would cause him to be sterile?????? > Thanks for your reply! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 They refer to these kinds of pills as chemotherapy, but don't get too caught up with that word. It's nothing like chemotherapy for cancer. It's an immune system suppressant that sometimes helps calm down the inflammation in the kidneys that leads to heavy proteinuria. It's not too different in concept than being on prednisone, except the side effects are probably less for most people (from what I've heard, as I've never been on any of these drugs myself). It's often part of the drug cocktail kidney tranplant recipients have to take. Pierre Re: Question > > I'm not exactly sure but the pill your neph may be referring to is CellCept. > It supressed the imune system. I've been taking it since January 1st and it > has been working very well for me. Previously I had been on high doses of > prednisone, which didn't not help me much. Rita > Is the CellCept a form of Chemo? Someone mentioned to me that if he took a > Chemo pill it would cause him to be sterile?????? > Thanks for your reply! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 HI , I think Pierre and Amy have both pointed you in the right direction, but don't hesitate to ask if you have any other questions. Amy referred to a great resource that Cy put together. It has a list of things that will be good for you to track. Please keep us posted on how he is doing. I can only imagine how hard it has to be as a parent to watch your child go through this. I would rather I have it (which fortunately, I do) than to have one of my girls have IgAN. It has to be heartbreaking to know your child has a chronic disease. My heart goes out to you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 Hi Rita, Your email encouraged me because I am starting on Cellcept tomorrow. Did you have any side effects? I am glad to know it is working well for you. I tried Prednisone in 2001, but did not have good results with it. In a message dated 3/1/2004 10:46:19 AM Pacific Standard Time, ritanuch1014@... writes: > I'm not exactly sure but the pill your neph may be referring to is > CellCept. It supressed the imune system. I've been taking it since January 1st and > it has been working very well for me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 there is a list of questions to take to your nepthrologist in the files section on the Yahoo site. Log into the Yahoo Groups site, click on " Files " on the left hand side of the screen, the list is under " Questions to ask your Nephrologist.doc " a little ways down the page. It's a good starting point for questions to bring with you for the next appointment. Also ask your nepthologist for COPIES of all lab work and biopsy reports. They are your property and you should keep copies in your records. I have mine copy any new lab reports at each of my appointments and I keep them in a folder here at home. They come in very handy when you have to go into your regular doctor for other things such as colds....that way they can see at a glance where you are at regarding lab values without having to bother your nepthrologist for them. It seems that many nepthrologists leave you hanging until your next appointment. I don't know if they do it so that things can sink in and you can research stuff before they answer any questions but mine did the same thing. I came home from my appointment and started to look up everything I could regarding IgA on-line. It still took me a good 2 months after starting treatments to get my head around things and start asking many of the " right " questions. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 What I do is have a Doctor notebook that I take with me every time I go to the doctors. And when I come up with a question for him I write it down in my notebook and don't date it till I ask him the next time I see him. Its helps a lot (I have 4 doctors and a pt) It is also acts like a journal for me. I can keep track of weight, blood pressure and other things going on. and then bring it with me and we can go over it. I hope this helps and when I was first dianosed with IGA one kidneys doctor did tell me about chemo but said at the time they didn't think it would work for me. Good luck and hope this helps. Martha -- In iga-nephropathy , LSummers@a... wrote: > My son was recently diagnosed with IGAN. One of the things I specifically > remember his Neph saying is something about a Chemo Pill.........when the time > came. I have not heard anyone on this list mention anything about having to do > Chemo??? > We see the Neph again March 12th. We were pretty much blown away with the > diagnosis to start with. Then he says " Do you have any questions " . DUH! But I > had no clue what to ask or where to start. Can anyone give me advice on what > to ask him when we go back? I mean, I have no clue how far advanced my son > is with this disease. I know nothing!!!!! All he said was " Your son has an > uncureable kidney disease called IgA Nephrapathy, 5 of the 15 cells were dead, > I'm putting him on blood pressure meds (didn't say why), possibly next visit > we'll put him on fish oil, he may have to do Chemo Pills, possibly kidney > diaylsis and then kidney transplant............any questions? " > ARGH *SCREAM* > We go today for more bloodwork with a follow up appointment on March 12. I > need to know what to ask him. Any advice??? > Thanks!! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 What I do is have a Doctor notebook that I take with me every time I go to the doctors. And when I come up with a question for him I write it down in my notebook and don't date it till I ask him the next time I see him. Its helps a lot (I have 4 doctors and a pt) It is also acts like a journal for me. I can keep track of weight, blood pressure and other things going on. and then bring it with me and we can go over it. I hope this helps and when I was first dianosed with IGA one kidneys doctor did tell me about chemo but said at the time they didn't think it would work for me. Good luck and hope this helps. Martha -- In iga-nephropathy , LSummers@a... wrote: > My son was recently diagnosed with IGAN. One of the things I specifically > remember his Neph saying is something about a Chemo Pill.........when the time > came. I have not heard anyone on this list mention anything about having to do > Chemo??? > We see the Neph again March 12th. We were pretty much blown away with the > diagnosis to start with. Then he says " Do you have any questions " . DUH! But I > had no clue what to ask or where to start. Can anyone give me advice on what > to ask him when we go back? I mean, I have no clue how far advanced my son > is with this disease. I know nothing!!!!! All he said was " Your son has an > uncureable kidney disease called IgA Nephrapathy, 5 of the 15 cells were dead, > I'm putting him on blood pressure meds (didn't say why), possibly next visit > we'll put him on fish oil, he may have to do Chemo Pills, possibly kidney > diaylsis and then kidney transplant............any questions? " > ARGH *SCREAM* > We go today for more bloodwork with a follow up appointment on March 12. I > need to know what to ask him. Any advice??? > Thanks!! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 Just a thought. I started a notebook for my son . I got a 2 " and purchased a package of 12 tabs. When I got all his medical records for when he was in the hospital for 2 weeks during Christmas and New Year, the hospital charged us $157.50. Then the ndoc office said we could have medical records faxed to their office and it would not cost anything. They have to send the doctor a copy for no charge. So now I have all records not done at this ndoc faxed to her. I would advice getting all medical records to keep for your records. I also keep all insurance payments, bills paid and not paid in there. His whole medical life since Dec 22, 2003 is in his notebook. Deborah Bowman/tn *Ü* deborah@... Our 17yo son Bowman is in (ESRD) End Stage Renal Disease with IGaN Please sign his guestbook at this site http://www.caringbridge.org/tn/dbowman > Also ask your nepthologist for COPIES of all lab work and biopsy reports. > They are your property and you should keep copies in your records. I have > mine copy any new lab reports at each of my appointments and I keep them in > a folder here at home. > > Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2009 Report Share Posted September 9, 2009 Thank You! I feel better now! > > >I am on armour thyroid. I also forgot that when I took this test I had taken my armour. > > Then this is a perfectly normal lab, you need to not take the Armour > on the day of the lab until after the blood draw > > >My lab also said I was low in my Tsh and normal with my T4. > > Then that's normal for Armour, most people feel best with TSH > suppressed. > > There is a list of typical lab numbers on the STTM site. > > Nick > Quote Link to comment Share on other sites More sharing options...
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