New to the group

[Guest guest]

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!

[Guest guest]

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!

[Guest guest]

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!

[Guest guest]

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

[Guest guest]

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

>

>

>

>

[Guest guest]

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

>

>

>

>

[Guest guest]

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

>

>

>

>

[Guest guest]

> 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

[Guest guest]

> 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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

, 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

[Guest guest]

, 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

[Guest guest]

, 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

[Guest guest]

> 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

[Guest guest]

> 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

[Guest guest]

> 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

[Guest guest]

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

>

>

>

[Guest guest]

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

>

>

>

[Guest guest]

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,

[Guest guest]

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,

[Guest guest]

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

>

[Guest guest]

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

>

[Guest guest]

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

>