Guest guest Posted January 16, 2001 Report Share Posted January 16, 2001 Dear Keri, When do yu go back to your doctor for a follow up? After my first loss, I was told that it probably was a " fluke " that the EP happened and to try again when I was ready. Only after my second loss did they start testing. I had an HSG test that showed no abnormalities and then 3 more losses! So, it's hard to knwo where your doctor will want you start. The best thing I can tell you is to arm yourself with as much knowledge as possible and then ask questions and don't be afraid to speak up if you disagree. My OB/GYN urged me time and again to have my right tube removed. Only after a consult with my RE did I learn that my right tube (the one I'd had all the problems with) was probably my best one and my RE felt that I couldn't even conceive from my left tube. I know that this pregnancy DID come from my right tube. I had an ultrasound early on and could see the corpus luteum still attached to my right ovary. So, to make a long story short, don't be afraid to speak your mind! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2001 Report Share Posted January 16, 2001 Dear Keri, When do yu go back to your doctor for a follow up? After my first loss, I was told that it probably was a " fluke " that the EP happened and to try again when I was ready. Only after my second loss did they start testing. I had an HSG test that showed no abnormalities and then 3 more losses! So, it's hard to knwo where your doctor will want you start. The best thing I can tell you is to arm yourself with as much knowledge as possible and then ask questions and don't be afraid to speak up if you disagree. My OB/GYN urged me time and again to have my right tube removed. Only after a consult with my RE did I learn that my right tube (the one I'd had all the problems with) was probably my best one and my RE felt that I couldn't even conceive from my left tube. I know that this pregnancy DID come from my right tube. I had an ultrasound early on and could see the corpus luteum still attached to my right ovary. So, to make a long story short, don't be afraid to speak your mind! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2001 Report Share Posted January 16, 2001 Dear Keri, When do yu go back to your doctor for a follow up? After my first loss, I was told that it probably was a " fluke " that the EP happened and to try again when I was ready. Only after my second loss did they start testing. I had an HSG test that showed no abnormalities and then 3 more losses! So, it's hard to knwo where your doctor will want you start. The best thing I can tell you is to arm yourself with as much knowledge as possible and then ask questions and don't be afraid to speak up if you disagree. My OB/GYN urged me time and again to have my right tube removed. Only after a consult with my RE did I learn that my right tube (the one I'd had all the problems with) was probably my best one and my RE felt that I couldn't even conceive from my left tube. I know that this pregnancy DID come from my right tube. I had an ultrasound early on and could see the corpus luteum still attached to my right ovary. So, to make a long story short, don't be afraid to speak your mind! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2001 Report Share Posted January 17, 2001 Dear, Thanks for your e-mail. I haven't been to a doctor yet because my ep happened in the er and it wasn't my regular doctor.Also today it has been 6 weeks since it has happened, and I am still a little sore, because they had to cut me open, and I am a little tired of being poked at. I am not going back to the doctor who told me that I was pregnant, because I do not feel comfortable with them. I am looking for a really good one who will take the time and listen because I am scared to death of what they are going to find. See, I didn't know that I had scar tissue in me until this ep, and it was an emergency ep so they didn't really look around in me. You said that I should be reading things and be ready. Do you know of any books that I could get? Or where I could get better Info about ep's? Thanks again for just being here and replying, it means so much to me. ----Keri Find the best deals on the web at AltaVista Shopping! http://www.shopping.altavista.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2001 Report Share Posted January 17, 2001 Keri, where do you live? Someone in the group may know of a good doctor in your area. maria Re: New to the group > Dear, > Thanks for your e-mail. I haven't been to a doctor yet because my ep happened in the er and it wasn't my regular doctor.Also today it has been 6 weeks since it has happened, and I am still a little sore, because they had to cut me open, and I am a little tired of being poked at. I am not going back to the doctor who told me that I was pregnant, because I do not feel comfortable with them. I am looking for a really good one who will take the time and listen because I am scared to death of what they are going to find. See, I didn't know that I had scar tissue in me until this ep, and it was an emergency ep so they didn't really look around in me. You said that I should be reading things and be ready. Do you know of any books that I could get? Or where I could get better Info about ep's? > Thanks again for just being here and replying, it means so much to .. ----Keri > > > Find the best deals on the web at AltaVista Shopping! > http://www.shopping.altavista.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2001 Report Share Posted January 17, 2001 Keri, where do you live? Someone in the group may know of a good doctor in your area. maria Re: New to the group > Dear, > Thanks for your e-mail. I haven't been to a doctor yet because my ep happened in the er and it wasn't my regular doctor.Also today it has been 6 weeks since it has happened, and I am still a little sore, because they had to cut me open, and I am a little tired of being poked at. I am not going back to the doctor who told me that I was pregnant, because I do not feel comfortable with them. I am looking for a really good one who will take the time and listen because I am scared to death of what they are going to find. See, I didn't know that I had scar tissue in me until this ep, and it was an emergency ep so they didn't really look around in me. You said that I should be reading things and be ready. Do you know of any books that I could get? Or where I could get better Info about ep's? > Thanks again for just being here and replying, it means so much to .. ----Keri > > > Find the best deals on the web at AltaVista Shopping! > http://www.shopping.altavista.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2001 Report Share Posted January 17, 2001 Keri, where do you live? Someone in the group may know of a good doctor in your area. maria Re: New to the group > Dear, > Thanks for your e-mail. I haven't been to a doctor yet because my ep happened in the er and it wasn't my regular doctor.Also today it has been 6 weeks since it has happened, and I am still a little sore, because they had to cut me open, and I am a little tired of being poked at. I am not going back to the doctor who told me that I was pregnant, because I do not feel comfortable with them. I am looking for a really good one who will take the time and listen because I am scared to death of what they are going to find. See, I didn't know that I had scar tissue in me until this ep, and it was an emergency ep so they didn't really look around in me. You said that I should be reading things and be ready. Do you know of any books that I could get? Or where I could get better Info about ep's? > Thanks again for just being here and replying, it means so much to .. ----Keri > > > Find the best deals on the web at AltaVista Shopping! > http://www.shopping.altavista.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2001 Report Share Posted January 17, 2001 > Do you know of any books that I could get? Or where I could get > better Info about ep's? > Thanks again for just being here and replying, it means so much to me. This is something I found online: If you find it dry and unuseful, feel free to delete it. This is also just one of like 3 pages of info: Early diagnosis of an ectopic pregnancy is critically important in terms of outcome. When an ectopic pregnancy is detected early in development, especially prior to rupture or damage to surrounding tissue, major morbidity is decreased and the treatment options are enhanced. There is no uniformly accepted diagnostic protocol for the determination of an ectopic pregnancy. Different gynecologists seem to have protocols that " work for them. " These are often modifications of the published flow diagrams found in the major text books. Some of the common themes are discussed here. A universal characteristic of a good " early diagnosis " protocol is a " high index of suspicion. " Even in the absence of known risk factors, ectopic pregnancy may occur as often as 1-2% of pregnancies. If there are multiple risk factors, the risk may be 25% of pregnancies. Sensitive blood hCG assays allow very early diagnosis of pregnancy. Typically these assays have a sensitivity of 1-5 mIU/mL so they can detect the occurrence of pregnancy (not location) about 7-8 days after fertilization (a few days prior to a missed menstrual flow). If the hCG assay is negative (generally less than 5 mIU/mL) then complications from an ectopic pregnancy are generally thought to be ruled out. Exceptions may occur in unusual circumstances, such as when one of my patients was treated for an ectopic pregnancy with medication (methotrexate) and she ruptured a blood vessel from the ectopic pregnancy site after her hCG dropped from a few thousand mIU/mL to negative (less than 5 mIU/mL). Caution should always prevail. Other blood concentrations of pregnancy related polypeptides or steroid hormones have been used for the early detection of ectopic pregnancy. Included are progesterone, early pregnancy factor (EPF), pregnancy specific beta-1 glycoprotein (SP1), and placental protein 5 (PP 5). These other factors have not been adequately characterized to allow widespread routine use in ectopic pregnancy detection. The second most common hormone (hCG is the most common) followed in pregnancy is progesterone. Unfortunately, there is a wide overlap between circulating progesterone concentrations in normal intrauterine pregnancy and ectopic pregnancy. Generally, a progesterone concentration of greater than 25 ng/mL is highly correlated (greater than 95%) with a normal intrauterine pregnancy while a concentration of less than 5 ng/mL is highly correlated (almost 100%) with an abnormal and nonviable pregnancy. Concentrations between 10 and 20 ng/mL (the most common concentrations) are of little differential value. Of concern for those who use 5 ng/mL as an indicator of fetal nonviability are the reports of several women with documented very low progesterone concentrations (typically thought to be inconsistent with a viable intrauterine pregnancy) who have gone on to deliver babies at term. These reports force one to reconsider the value of the progesterone concentrations, and include: women with the congenital abnormality known as " abetalipoproteinemia " have cells that are unable to take up and use VLDL-cholesterol. VLDL-cholesterol is a primary source for cellular cholesterol. Since cholesterol is required for the synthesis of progesterone these women have very low circulating progesterone concentrations. There are reports of women with abetalipoproteinemia who have documented low progesterone concentrations throughout pregnancy and have carried their pregnancy to term fetuses with a rare deficiency in one of the enzymes required for progesterone production, such as " 3-beta hydroxysteroid dehydrogenase " or the " cholesterol side M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2001 Report Share Posted January 17, 2001 > Do you know of any books that I could get? Or where I could get > better Info about ep's? > Thanks again for just being here and replying, it means so much to me. This is something I found online: If you find it dry and unuseful, feel free to delete it. This is also just one of like 3 pages of info: Early diagnosis of an ectopic pregnancy is critically important in terms of outcome. When an ectopic pregnancy is detected early in development, especially prior to rupture or damage to surrounding tissue, major morbidity is decreased and the treatment options are enhanced. There is no uniformly accepted diagnostic protocol for the determination of an ectopic pregnancy. Different gynecologists seem to have protocols that " work for them. " These are often modifications of the published flow diagrams found in the major text books. Some of the common themes are discussed here. A universal characteristic of a good " early diagnosis " protocol is a " high index of suspicion. " Even in the absence of known risk factors, ectopic pregnancy may occur as often as 1-2% of pregnancies. If there are multiple risk factors, the risk may be 25% of pregnancies. Sensitive blood hCG assays allow very early diagnosis of pregnancy. Typically these assays have a sensitivity of 1-5 mIU/mL so they can detect the occurrence of pregnancy (not location) about 7-8 days after fertilization (a few days prior to a missed menstrual flow). If the hCG assay is negative (generally less than 5 mIU/mL) then complications from an ectopic pregnancy are generally thought to be ruled out. Exceptions may occur in unusual circumstances, such as when one of my patients was treated for an ectopic pregnancy with medication (methotrexate) and she ruptured a blood vessel from the ectopic pregnancy site after her hCG dropped from a few thousand mIU/mL to negative (less than 5 mIU/mL). Caution should always prevail. Other blood concentrations of pregnancy related polypeptides or steroid hormones have been used for the early detection of ectopic pregnancy. Included are progesterone, early pregnancy factor (EPF), pregnancy specific beta-1 glycoprotein (SP1), and placental protein 5 (PP 5). These other factors have not been adequately characterized to allow widespread routine use in ectopic pregnancy detection. The second most common hormone (hCG is the most common) followed in pregnancy is progesterone. Unfortunately, there is a wide overlap between circulating progesterone concentrations in normal intrauterine pregnancy and ectopic pregnancy. Generally, a progesterone concentration of greater than 25 ng/mL is highly correlated (greater than 95%) with a normal intrauterine pregnancy while a concentration of less than 5 ng/mL is highly correlated (almost 100%) with an abnormal and nonviable pregnancy. Concentrations between 10 and 20 ng/mL (the most common concentrations) are of little differential value. Of concern for those who use 5 ng/mL as an indicator of fetal nonviability are the reports of several women with documented very low progesterone concentrations (typically thought to be inconsistent with a viable intrauterine pregnancy) who have gone on to deliver babies at term. These reports force one to reconsider the value of the progesterone concentrations, and include: women with the congenital abnormality known as " abetalipoproteinemia " have cells that are unable to take up and use VLDL-cholesterol. VLDL-cholesterol is a primary source for cellular cholesterol. Since cholesterol is required for the synthesis of progesterone these women have very low circulating progesterone concentrations. There are reports of women with abetalipoproteinemia who have documented low progesterone concentrations throughout pregnancy and have carried their pregnancy to term fetuses with a rare deficiency in one of the enzymes required for progesterone production, such as " 3-beta hydroxysteroid dehydrogenase " or the " cholesterol side M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Keri, If you haven't been to Krista's website, it is a good place to start finding out info on eps and it may give you some idea of questions you want to ask you new dr when you find him/her. the site is ectopicpregnancy.com -AmyR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Keri, If you haven't been to Krista's website, it is a good place to start finding out info on eps and it may give you some idea of questions you want to ask you new dr when you find him/her. the site is ectopicpregnancy.com -AmyR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Keri, If you haven't been to Krista's website, it is a good place to start finding out info on eps and it may give you some idea of questions you want to ask you new dr when you find him/her. the site is ectopicpregnancy.com -AmyR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 , i live in Dallas, Tx. so if any one has suggestions for a good doctor? Let me know. Thanks, ----Keri > > > > > > > > Find the best deals on the web at AltaVista Shopping! http://www.shopping.altavista.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 , i live in Dallas, Tx. so if any one has suggestions for a good doctor? Let me know. Thanks, ----Keri > > > > > > > > Find the best deals on the web at AltaVista Shopping! http://www.shopping.altavista.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 , i live in Dallas, Tx. so if any one has suggestions for a good doctor? Let me know. Thanks, ----Keri > > > > > > > > Find the best deals on the web at AltaVista Shopping! http://www.shopping.altavista.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 > He has been with the > same class since the age of three and then all of a sudden when i > picked him up he was heartbroken, It seems that the other children > had started picking on him becuase of his hearing aids. We have felt > that this would happen in time, but I just fell so helpless now. I > don't know what can be done any ideas? I think first of all I would find out if the teacher knew about what was going on and if so, if she did anything to discourage this. I too have found out that the key to avoiding this is to make sure the kids understand hearing loss and hearing aids (or cochlear implants). I used to always go into my son's class during the first week of school and talk to them about hearing loss and even let them listen to their own voices through hearing aids with a special stethoscope set up. I let the kids ask questions, and I was always impressed by the level of their questions. Perhaps at your son's age, reading them one of the children's books available about hearing aids would be helpful. There are many, but there is one from Phonak that you can download for free. The link is too long for an email (I think), but you can find it on this page: http://www.listen-up.org/haid/hear-aid.htm The listings are alphabetical and you're looking for Oliver Gets Hearing Aids. If you want to get one that's published, you can find some listed here: http://www.listen-up.org/h_books/kids.htm Children tend to tease and make fun of things they don't understand, at least that's been my experience. Sorry you're having to deal with this at such an early age. I hope that in some of our answers, you're able to find what works for you and your child. -Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 > He has been with the > same class since the age of three and then all of a sudden when i > picked him up he was heartbroken, It seems that the other children > had started picking on him becuase of his hearing aids. We have felt > that this would happen in time, but I just fell so helpless now. I > don't know what can be done any ideas? I think first of all I would find out if the teacher knew about what was going on and if so, if she did anything to discourage this. I too have found out that the key to avoiding this is to make sure the kids understand hearing loss and hearing aids (or cochlear implants). I used to always go into my son's class during the first week of school and talk to them about hearing loss and even let them listen to their own voices through hearing aids with a special stethoscope set up. I let the kids ask questions, and I was always impressed by the level of their questions. Perhaps at your son's age, reading them one of the children's books available about hearing aids would be helpful. There are many, but there is one from Phonak that you can download for free. The link is too long for an email (I think), but you can find it on this page: http://www.listen-up.org/haid/hear-aid.htm The listings are alphabetical and you're looking for Oliver Gets Hearing Aids. If you want to get one that's published, you can find some listed here: http://www.listen-up.org/h_books/kids.htm Children tend to tease and make fun of things they don't understand, at least that's been my experience. Sorry you're having to deal with this at such an early age. I hope that in some of our answers, you're able to find what works for you and your child. -Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 > He has been with the > same class since the age of three and then all of a sudden when i > picked him up he was heartbroken, It seems that the other children > had started picking on him becuase of his hearing aids. We have felt > that this would happen in time, but I just fell so helpless now. I > don't know what can be done any ideas? I think first of all I would find out if the teacher knew about what was going on and if so, if she did anything to discourage this. I too have found out that the key to avoiding this is to make sure the kids understand hearing loss and hearing aids (or cochlear implants). I used to always go into my son's class during the first week of school and talk to them about hearing loss and even let them listen to their own voices through hearing aids with a special stethoscope set up. I let the kids ask questions, and I was always impressed by the level of their questions. Perhaps at your son's age, reading them one of the children's books available about hearing aids would be helpful. There are many, but there is one from Phonak that you can download for free. The link is too long for an email (I think), but you can find it on this page: http://www.listen-up.org/haid/hear-aid.htm The listings are alphabetical and you're looking for Oliver Gets Hearing Aids. If you want to get one that's published, you can find some listed here: http://www.listen-up.org/h_books/kids.htm Children tend to tease and make fun of things they don't understand, at least that's been my experience. Sorry you're having to deal with this at such an early age. I hope that in some of our answers, you're able to find what works for you and your child. -Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 Hi Jean! Welcome--you've come to the right place for good info. About the " injection " I think you are referring to Thyrogen, which is a drug given to increase the TSH for scanning. Right now, to my knowledge, it is not approved for RAI. I'm afraid for RAI, you will have to go hypo and follow the Low Iodine diet. I'm relatively new myself -- just over a year--and there are many more people more knowledgeable that me, so I'm sure that you'll get the straight scoop from one of our knowledge stars. Colly To: Thyca Date sent: Fri, 22 Nov 2002 16:40:45 -0000 Subject: New to the group Send reply to: Thyca > Hi, > I joined the group today and would like to introduce myself. I am 46, > wife, mom and artist who was diagosed with > mucoepidermoid ca (small salivary gland/soft tissue) 14 years ago > (right side of neck) and am ca free since. But because of the > radiation treatment, developed papillary ca, TT last October, am > taking Levoxyl, 100mcg and 10 mcg Cytomel. I am interested to know if > anyone has a similiar health history. > Because of my ca history it sounds like I will have to have another > RAI soon, but have heard of an injection that would > do the same thing and you don't have to go off meds. The problem here > in Northern Michigan is convincing BC/BSto pay for it, but it has been > done by other patients of my doctor. > Have a great day! > Jean > > > > For more information regarding thyroid cancer visit www.thyca.org. If > you do not wish to belong to this group, you may UNSUBSCRIBE by > sending a blank email to thyca-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 Hi Jean! Welcome--you've come to the right place for good info. About the " injection " I think you are referring to Thyrogen, which is a drug given to increase the TSH for scanning. Right now, to my knowledge, it is not approved for RAI. I'm afraid for RAI, you will have to go hypo and follow the Low Iodine diet. I'm relatively new myself -- just over a year--and there are many more people more knowledgeable that me, so I'm sure that you'll get the straight scoop from one of our knowledge stars. Colly To: Thyca Date sent: Fri, 22 Nov 2002 16:40:45 -0000 Subject: New to the group Send reply to: Thyca > Hi, > I joined the group today and would like to introduce myself. I am 46, > wife, mom and artist who was diagosed with > mucoepidermoid ca (small salivary gland/soft tissue) 14 years ago > (right side of neck) and am ca free since. But because of the > radiation treatment, developed papillary ca, TT last October, am > taking Levoxyl, 100mcg and 10 mcg Cytomel. I am interested to know if > anyone has a similiar health history. > Because of my ca history it sounds like I will have to have another > RAI soon, but have heard of an injection that would > do the same thing and you don't have to go off meds. The problem here > in Northern Michigan is convincing BC/BSto pay for it, but it has been > done by other patients of my doctor. > Have a great day! > Jean > > > > For more information regarding thyroid cancer visit www.thyca.org. If > you do not wish to belong to this group, you may UNSUBSCRIBE by > sending a blank email to thyca-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hi Karrissa, I wanted to extend a personal welcome to you. I am not yet on dialysis, so I am not the best person to answer your specific questions, but I did still want to tell you how happy we are to have you in this group. I hope you find us all very welcoming, encouraging and a great source of information. You have already seen the expertise of Pierre, our founder. He is the gem of the group! There is nothing I could add to Pierre's comprehensive response. I do hope they can get things regulated with you BP so your headaches can be alleviated. Welcome again, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hi Karrissa, I wanted to extend a personal welcome to you. I am not yet on dialysis, so I am not the best person to answer your specific questions, but I did still want to tell you how happy we are to have you in this group. I hope you find us all very welcoming, encouraging and a great source of information. You have already seen the expertise of Pierre, our founder. He is the gem of the group! There is nothing I could add to Pierre's comprehensive response. I do hope they can get things regulated with you BP so your headaches can be alleviated. Welcome again, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hi Karrissa Welcome to the group. Being on hemodialysis 3 times per week myself, I can sympathize with your problems. I've been on hemo for a year and a half. While everyone around me at the dialysis centre seems to have low blood pressure after dialysis, like you, mine tends to go higher as soon as I stand after - nowhere near as high as yours though. I tend to feel tired in the hours leading up to my evening dialysis, and I feel a little " wiped out " as you say, after, when I get home. What they call " post-dialysis hypertension " is not really uncommon though. Does your BP stay high for long, or is it more normal a few hours later at home? Many of us on dialysis still have significant kidney function (up to 10%), and we can maintain it for quite a long time (years, in some cases). The kidneys perform various functions, one of which is control of blood pressure. It could be that yours function very well in that regard. When the kidneys sense that blood pressure is too low, they pump out a hormone called " renin " into the bloodstream. This starts of cascade of events in the body - generally referred to as the renin-angiotensin system - that cause blood pressure to rise, sometimes dramatically. The drugs drugs Diovan and prinivil you're already on work on blocking that system from functioning, but they don't block it totally. It might be that it will take some experimenting with other drugs of the same class to see if they work better for you. The body actually has a number of different " systems " that it can use to control blood pressure. Besides the kidneys, another one is what is called the sympathetic nervous system. Sometimes, this system goes into high gear in order to raise the blood pressure. Has anyone of your doctors mentioned the drug " clonidine " (or by its brand name, Catapress)? There are so many possibilities, that it may take some time to work things out. There are other factors too. Does your BP go too low during treatment? You know, they actually add salt to us the first hour or so of treatment to prevent low blood pressure. Maybe that's out of whack, in your case. To deal with either too much renin or too much sympathetic nervous system overactivity that causes high blood pressure, some hemodialysis patients end up having a nephrectomy. Personally, I might consider asking about switching to peritoneal dialysis if I had that problem, and no other contraindications to doing PD. I'm not a doctor though, just another patient like you. Pierre New to the group > Hi all, > > I am very happy to have found this site. I am hoping I can get answers to some of the questions I have from people who have similar situations. > > I was diagnosed with IgaN about a year ago but things werent that bad...About 2 months ago, when my blood pressure started going sky high, the doctors recommended a kidney biopsy. The reports from my regular blood work were getting worse too... 24 hr urine showed my kidney function down to 9%. This was when the doctors said I had to be on dialysis right away. It's been like a month now that I have been on haemodialysis ..but things are getting very complicated. I have dialysis three times a week. On days when I dont have dialysis, I seem to be normal and feel good...but on dialysis days, I am totally wiped out...specially because of a very bad headache. On these days, my bp goes up to 190-200/120-125. I am on loads of meds such as hydralazine (now 100mg, 3 times a day), labetalol (600mg, 2 times a day), prinivil (40mg, once a day), and diavan (320mg once a day). The doctors havent been able to figure out the cause of the increaasing bp after dialysis and also why the meds havent been > working as it should. They also did some blood work to find out the hormone levels (since the kidneys shoot out some kind of hormomes when they are not functioning well), which is also believed to cause the high bp. > > I am on a very restricted diet..plus dont retain any fluid in my body. My dry weight is maintained at 96.8lb (44kg). I have completely lost my appetite (probably because of the strong meds I am on).... This is really frustrating since the doctors dont really have an answer to any of these problems. > > Anybody gone through similar situations?? Any inputs/suggestions would be highly appreciated. > > > Karrissa > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hi Karrissa Welcome to the group. Being on hemodialysis 3 times per week myself, I can sympathize with your problems. I've been on hemo for a year and a half. While everyone around me at the dialysis centre seems to have low blood pressure after dialysis, like you, mine tends to go higher as soon as I stand after - nowhere near as high as yours though. I tend to feel tired in the hours leading up to my evening dialysis, and I feel a little " wiped out " as you say, after, when I get home. What they call " post-dialysis hypertension " is not really uncommon though. Does your BP stay high for long, or is it more normal a few hours later at home? Many of us on dialysis still have significant kidney function (up to 10%), and we can maintain it for quite a long time (years, in some cases). The kidneys perform various functions, one of which is control of blood pressure. It could be that yours function very well in that regard. When the kidneys sense that blood pressure is too low, they pump out a hormone called " renin " into the bloodstream. This starts of cascade of events in the body - generally referred to as the renin-angiotensin system - that cause blood pressure to rise, sometimes dramatically. The drugs drugs Diovan and prinivil you're already on work on blocking that system from functioning, but they don't block it totally. It might be that it will take some experimenting with other drugs of the same class to see if they work better for you. The body actually has a number of different " systems " that it can use to control blood pressure. Besides the kidneys, another one is what is called the sympathetic nervous system. Sometimes, this system goes into high gear in order to raise the blood pressure. Has anyone of your doctors mentioned the drug " clonidine " (or by its brand name, Catapress)? There are so many possibilities, that it may take some time to work things out. There are other factors too. Does your BP go too low during treatment? You know, they actually add salt to us the first hour or so of treatment to prevent low blood pressure. Maybe that's out of whack, in your case. To deal with either too much renin or too much sympathetic nervous system overactivity that causes high blood pressure, some hemodialysis patients end up having a nephrectomy. Personally, I might consider asking about switching to peritoneal dialysis if I had that problem, and no other contraindications to doing PD. I'm not a doctor though, just another patient like you. Pierre New to the group > Hi all, > > I am very happy to have found this site. I am hoping I can get answers to some of the questions I have from people who have similar situations. > > I was diagnosed with IgaN about a year ago but things werent that bad...About 2 months ago, when my blood pressure started going sky high, the doctors recommended a kidney biopsy. The reports from my regular blood work were getting worse too... 24 hr urine showed my kidney function down to 9%. This was when the doctors said I had to be on dialysis right away. It's been like a month now that I have been on haemodialysis ..but things are getting very complicated. I have dialysis three times a week. On days when I dont have dialysis, I seem to be normal and feel good...but on dialysis days, I am totally wiped out...specially because of a very bad headache. On these days, my bp goes up to 190-200/120-125. I am on loads of meds such as hydralazine (now 100mg, 3 times a day), labetalol (600mg, 2 times a day), prinivil (40mg, once a day), and diavan (320mg once a day). The doctors havent been able to figure out the cause of the increaasing bp after dialysis and also why the meds havent been > working as it should. They also did some blood work to find out the hormone levels (since the kidneys shoot out some kind of hormomes when they are not functioning well), which is also believed to cause the high bp. > > I am on a very restricted diet..plus dont retain any fluid in my body. My dry weight is maintained at 96.8lb (44kg). I have completely lost my appetite (probably because of the strong meds I am on).... This is really frustrating since the doctors dont really have an answer to any of these problems. > > Anybody gone through similar situations?? Any inputs/suggestions would be highly appreciated. > > > Karrissa > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hi Karrissa Welcome to the group. Being on hemodialysis 3 times per week myself, I can sympathize with your problems. I've been on hemo for a year and a half. While everyone around me at the dialysis centre seems to have low blood pressure after dialysis, like you, mine tends to go higher as soon as I stand after - nowhere near as high as yours though. I tend to feel tired in the hours leading up to my evening dialysis, and I feel a little " wiped out " as you say, after, when I get home. What they call " post-dialysis hypertension " is not really uncommon though. Does your BP stay high for long, or is it more normal a few hours later at home? Many of us on dialysis still have significant kidney function (up to 10%), and we can maintain it for quite a long time (years, in some cases). The kidneys perform various functions, one of which is control of blood pressure. It could be that yours function very well in that regard. When the kidneys sense that blood pressure is too low, they pump out a hormone called " renin " into the bloodstream. This starts of cascade of events in the body - generally referred to as the renin-angiotensin system - that cause blood pressure to rise, sometimes dramatically. The drugs drugs Diovan and prinivil you're already on work on blocking that system from functioning, but they don't block it totally. It might be that it will take some experimenting with other drugs of the same class to see if they work better for you. The body actually has a number of different " systems " that it can use to control blood pressure. Besides the kidneys, another one is what is called the sympathetic nervous system. Sometimes, this system goes into high gear in order to raise the blood pressure. Has anyone of your doctors mentioned the drug " clonidine " (or by its brand name, Catapress)? There are so many possibilities, that it may take some time to work things out. There are other factors too. Does your BP go too low during treatment? You know, they actually add salt to us the first hour or so of treatment to prevent low blood pressure. Maybe that's out of whack, in your case. To deal with either too much renin or too much sympathetic nervous system overactivity that causes high blood pressure, some hemodialysis patients end up having a nephrectomy. Personally, I might consider asking about switching to peritoneal dialysis if I had that problem, and no other contraindications to doing PD. I'm not a doctor though, just another patient like you. Pierre New to the group > Hi all, > > I am very happy to have found this site. I am hoping I can get answers to some of the questions I have from people who have similar situations. > > I was diagnosed with IgaN about a year ago but things werent that bad...About 2 months ago, when my blood pressure started going sky high, the doctors recommended a kidney biopsy. The reports from my regular blood work were getting worse too... 24 hr urine showed my kidney function down to 9%. This was when the doctors said I had to be on dialysis right away. It's been like a month now that I have been on haemodialysis ..but things are getting very complicated. I have dialysis three times a week. On days when I dont have dialysis, I seem to be normal and feel good...but on dialysis days, I am totally wiped out...specially because of a very bad headache. On these days, my bp goes up to 190-200/120-125. I am on loads of meds such as hydralazine (now 100mg, 3 times a day), labetalol (600mg, 2 times a day), prinivil (40mg, once a day), and diavan (320mg once a day). The doctors havent been able to figure out the cause of the increaasing bp after dialysis and also why the meds havent been > working as it should. They also did some blood work to find out the hormone levels (since the kidneys shoot out some kind of hormomes when they are not functioning well), which is also believed to cause the high bp. > > I am on a very restricted diet..plus dont retain any fluid in my body. My dry weight is maintained at 96.8lb (44kg). I have completely lost my appetite (probably because of the strong meds I am on).... This is really frustrating since the doctors dont really have an answer to any of these problems. > > Anybody gone through similar situations?? Any inputs/suggestions would be highly appreciated. > > > Karrissa > Quote Link to comment Share on other sites More sharing options...
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