Re: new here

[Guest guest]

Hey Fred ! I work in town, on Jerico turnpike 989 jerico. small world

huh. nne

trimenow1234 wrote:

Hi ,

I can only say you come to the right place. Support is the

underpinning of slaying the dragon. If he realizes that others like

myself suffer from diseases not common to HCV (CAD Coronary Artery

Disease WPW Wolf Parkenson White syndrome SVT Arrhythmia and

Diabetes) I am on Plavix Atenol and Welchol for my heart. He may see

he is not alone in his plight. I have never taken HCV/Cirrhosis easy

and went along with the program but that is me. I am a fighter and

always looking for another way to fight this disease. You are very

lucky in that you live in the NY metropolitan area as some of the

best doctors and hospitals reside there. I am from the Bronx NY

originally and lived on LI in town. I now reside in Florida. So

there may be some common factors that he could relate to and express

his true feelings in the area of combating his diseases.

Wishing you prayers and hope,

Fred

It's a pleasure having you join in our conversations. We hope you have found the

support you need with us.

If you are using email for your posts, for easy access to our group, just click

the link-- http://groups.yahoo.com/group/Hepatitis_C_Central/

Happy Posting

---------------------------------

[Guest guest]

Hi nne,

I'm from Nesconset. What kind of work do you do in town?

[Guest guest]

Hi nne,

I used to live right off of Veteran's Highway. Used to drive into

the Bronx every day. On on LIE. Man what a trek that was. Had to

leave at 4 am to get to the Bronx at 8 am. Go 20 MPH all the way in.

I don't miss the traffic. Now in Florida a traffic jam is a cop on

the side of the road. But wait till super bowel gets here next week.

It will feel like NYC again.

I used to love the LI sound beach. Still have relatives in

Massapequa (spelling). Used to go to the point to do Stripper

fishing (Stripped Sea Bass)off the beach. Say hello to town for

me. Have friends in St. .

Fred

[Guest guest]

Marilyn,

Don't be mislead honey, sometimes, and I mean just sometimes, there are heated

discussions and 'junk science' here too. But our trusty owners Janet and Doug

and pretty quick off the mark at putting a stop to it. We try to encourage

those who feel they must have a dispute to take it off the list and into private

email.

Please don't be frightened off by others strong opinions ok?

anne

I am really liking what I am reading on this list, and will probably come out of

lurkdom soon. I'm not seeing the arguments and the junk science that I've seen

on some other lists - I just needed to know that I was in a safe place.

Marilyn

[Guest guest]

Marilyn,

I just wanted to say that this email is pure brilliance. We have many, many

very frightened people join this list scared out of their wits about Hep C.

Sometimes its hard to find the right words of comfort. I know that if I'd read

this when my beloved was first diagnosed, there would have been a lot less

anguish in our house.

If it's alright with you, I'd like to keep your email in my files and quote from

it to new members when appropriate. Is that ok?

Love

anne

Re: New here

I agree, Sharon, especially when it's much harder to spread sexually than HIV,

and has 1/2 the incidence of being transmitted in utero as HIV (which is a very

small rate). Good God, when I first got my diagnosis, I thought, OMG, I've had

this since I've been 10 or 12, did I give it to my son and daughter, and what

about my 5 grandchildren? That's what really freaked me out.

I had my second husband get tested - we've been married 26 years and never

thought about protection. He is fine. I was widowed at a young age, not a sad

story, though, more of a liberation. When all of this hit me at the beginning,

I was so worried that I unleashed something on a bunch of wonderful people that

I loved with all my heart. My husband is such a wonderful man, and it would

have broken my heart if I would have infected him. And my children and

grandchildren, I can't even wrap my mind around that!

I am soooo thankful that I had the internet when I got my diagnosis. I

learned so much from people who were " living with " and not " dying from " Hep C.

It makes me nuts that there isn't more media attention given to Hep C - there

are so many more of us dealing with this than people with HIV or breast cancer,

not to take anything away from those people. But it's still thought to be a

disease brought on by unsafe sex or needle use - and who cares about those

people anyway?

I just wish there was a way to give a " face " to all of us for the general

public. And I certainly don't want anyone to think I am pointing fingers at

anyone who shared needles, or got this through unsafe sex. We all did really

stupid things when we were young. That doesn't mean any one of us deserved Hep

C, or that others of us were innocent victims. It's just the luck of the draw

that we get in our lifetimes.

See, I told you all if I came out of lurkdom that I would babble! I can't

believe my fortune that I have found such a loving group! Somehow, I feel like

I have " come home " .

Marilyn

[Guest guest]

anne, been there, done that, too! Strong opinions don't bother me, I look

for good moderators on lists to oversee everything, and the ones on this list

are the best from what I can tell! There was a guy on another list that I was

on that just took an instant dislike for me. If I said the sky was blue, he'd

flame me! I think maybe his ex-wife was named Marilyn? Anyway, it didn't take

me long to figure out the guy was drunk most of the time - smart move with Hep

C, huh? My first husband was an alcoholic, so I could pretty much tell what was

going on. Too freaky to get into, but I left that list. I much prefer normal

people. This was also a list where a woman was hawking the joys of colloidal

silver - she was selling it - it had started out to be a really good list, but

the moderator got a good SRV and turned the list over to someone else so she

could concentrate her time to go to nursing school.

I can remember a couple of years ago on my good list that went downhill, we had

a really interesting discussion about milk thistle - does it help or does it

mask problems? I still don't know, but I welcome the debate. I finally

unsubbed from that list today, and this is the only one I am on. I'm sorry, but

it got on my very last nerve today when this lady named Pam posted yet another

one of her junk science studies, about how if you go into the hospital, you

*will* die from a non-resistant strep infection!

Life is not so dire, nor does it have to be about drama. Yes, I live with Hep

C, I had a really dry spell where I didn't have anywhere to go, and I know I

need others who know what I am going through. Yet I had a really good day

today, playing with and training my little 16 week old puppy. She is such a

joy! I have become such a dog freak - guess that's what happens when the kids

grow up and get lives of their own. My firstborn, Jen, turned 36 today. I love

seeing the mother she is to her four children. Life is so full of boundless

joy, but yet I can't ignore the state of my health if I want to be around to

take it all in.

I feel at home here already! And I'm happy that Kim is here with his Friday

Fight Songs! Hi, Kim!

Marilyn

Re: New here

Marilyn,

Don't be mislead honey, sometimes, and I mean just sometimes, there are heated

discussions and 'junk science' here too. But our trusty owners Janet and Doug

and pretty quick off the mark at putting a stop to it. We try to encourage

those who feel they must have a dispute to take it off the list and into private

email.

Please don't be frightened off by others strong opinions ok?

anne

I am really liking what I am reading on this list, and will probably come out

of lurkdom soon. I'm not seeing the arguments and the junk science that I've

seen on some other lists - I just needed to know that I was in a safe place.

Marilyn

[Guest guest]

Oh, anne, feel free to keep it! I was crazy when I was first diagnosed, and

I don't get rattled easily. When my last list was still good, my role was to

help out the new people who didn't need to go on TX. Gosh, I still miss so many

of those people so much. They went out of their way to get me through my

insanity and to make me believe that this isn't a death sentence. When my

doctor called me with my test results, the first thing that went through my mind

is " now I know what is going to kill me " . Now I know that is probably not true,

but possibly could be, I just have to live my life for what it's worth.

And I don't know if some of you ever got to meet Pete, " Da Yooper " - he was a

Viet Nam vet who was royally screwed over by the VA, like a lot of vets are. He

fought with all his heart, but no matter how bad his Hep C got, the VA turned a

deaf ear. He considered himself a " Yooper " (living in the upper peninsula of

MI, even though he lived in WI on the border). Two months before he died, he

found out he could get health insurance through the state of WI, but he died on

St. 's Day 2 years ago, just a short time before he was to get a liver

transplant.

Pete used to bust my butt all the time because I wouldn't go for the TX. He

used to get all over my case because I had TX available to me when he didn't,

and he thought I should just go for it. He didn't understand the problems of

the people I knew who had permanent sides from the treatment - he never had the

chance. Each of us has such a personal decision to make about how we are going

to go about our lives. And I still miss my good cyberfriend, Pete, and pray for

his soul every day. He was such a bear, but he had so much passion. I don't

meet many people like him.

Tolja I would babble!

Marilyn

Re: New here

Marilyn,

I just wanted to say that this email is pure brilliance. We have many, many

very frightened people join this list scared out of their wits about Hep C.

Sometimes its hard to find the right words of comfort. I know that if I'd read

this when my beloved was first diagnosed, there would have been a lot less

anguish in our house.

If it's alright with you, I'd like to keep your email in my files and quote

from it to new members when appropriate. Is that ok?

Love

anne

[Guest guest]

Hee Hee,

Yah baby, I run this place with a iron fist!!! Just joking.

In fact alot of the people don't even realize that I am one of the owners. I am

pretty quiet for the most part, letting the members help one another and try not

to lead the conversations on the board. Because for the most part, to have over

500 members this group just makes it easy to moderate. Some of the members are

really protective of one another, and I love them dearly.

You will find out that I am the crazy one of the bunch, I am the hot fudge lady,

with a wacky sense of humor. Hey, if you can't have fun then what is life about.

Besides I am on treatment right now, so I consider Laughter as the best

medicine. Sure is healing for me. Specially when them nasty side effects keep me

up running half the night. But even thern I approach that with a sense of humor.

Like the Poot scoot boggie, Hee Hee

Or hanging over the singing sweet uck songs.

My husband thinks I am a nut, and he is so right I am. But he is also proud of

me. He was afraid for me to start treatment again because well the last time was

pretty rough. But you know it wasn't so rough that I couldn't finish it. I am

stubborn that way. If I start something then I will finish it if it kills me.

Fortunately so far I have been lucky, Still here to fight another day.

I am very protective of my member here. I consider them all a part of my family.

Yeah believe it or not. I am even still close with Members that have decided to

leave us for whatever reasons. It is just that I become so close to everyone

here by sharing my story and hearing theirs. We become so intertwined in our

lifes that well it takes on that family feel.

For the most part you will find, that I am the class clown that sometimes gets

serious, Doug is our strong and wise silent type. He is a wonderful friend.

And anne our mother figure who is like a tiger when it comes to the members

here.

And it is funny although Doug, anne and I have never met in real life, we

seem to all gel so well when it comes to making decisions for the group.

So yeah I love this group too, every single member here. Believe me, I remember

each and everyone of the names.

Isn't that a trip, I can forget how to spell names, but I remember all the names

of the group members here that post.

Believe it or not I am sadden when someone decides to leave also. But I figure

that we were not meeting a need that had at the time. Or we did meet their needs

and they moved on.

Now I am rambling. LOL

Love

Janet

anne wrote:

Marilyn,

Don't be mislead honey, sometimes, and I mean just sometimes, there are heated

discussions and 'junk science' here too. But our trusty owners Janet and Doug

and pretty quick off the mark at putting a stop to it. We try to encourage

those who feel they must have a dispute to take it off the list and into private

email.

Please don't be frightened off by others strong opinions ok?

anne

I am really liking what I am reading on this list, and will probably come out of

lurkdom soon. I'm not seeing the arguments and the junk science that I've seen

on some other lists - I just needed to know that I was in a safe place.

Marilyn

[Guest guest]

Check out an article I just wrote about my own experiences with

Doctors and put out for the world to read. If you ladies would like

to do the same thing I can help make it happen. Check out it.

www.hopeforhepc.org

It's called Lessons Learned from Doctors

Dave

> > Marilyn,

> >

> > Good on you for getting out there and doing such research for

your

> own information. What is it with doctors who think their patients

> should blindly go where they're told to????? Makes no sense to

me!

> We are all individuals, even though you're all dealing with the

same

> diagnosis, and you will all respond differently to different

> therapys/ treatments. Are doctors so dumb they haven't worked

that

> out yet? People must have thorough information. How else can

they

> make informed decisions?

> >

> > Oh, and don't " go away " now will you, you're a valuable member

of

> our team now!

> >

> > Love

> > anne

> > Re: New here

> >

> >

> >

> > I *swear* I saw dollar bills with wings on them flying around

his

> head! I *know* he was getting a kickback from Roche. I had

the " Be

> in Charge " nurse from Roche saying I should order the TX drugs

from

> her, I had my insurance company saying I should order the drugs

from

> them, and I had my hepatologist saying I should order the drugs

from

> him. Something was going on here!

> >

> > The doctor told me I shouldn't put any faith in people I met

on

> the internet. Duhhhhh.......aren't we the people living with this

> disease? He told me the studies I found were old and outdated. I

> asked him about Pegasys, and he said it was such a lame rumor and

> wouldn't be on the market for at least 4 years - funny, it was out

> there 2 weeks later! Sheesh, when I got home from that doctor's

> visit, I went on the internet and found a study (since watered

down)

> put out by the NIH that very day - which said that genotypes 1

aren't

> good responders to the TX, and woo, hoo, for women, the younger

girls

> are when they contract it, the less likely they will ever need

> treatment! Well, I was 10 or 12 when I got the transfusions both

> times, and I was 54 when I got the diagnosis. I've been lucky so

> far, but may just be on borrowed time.

> >

> > Marilyn (who is going to go away now!)

> >

> >

> >

[Guest guest]

Hi Kim, Our stories sound very similar. In May had an appointment with our original specialist from Indianapolis. That is when we found out 's curve had gotten ten degrees worse in four months, and casting was suggested. My doctor described to me cast that sounds very similar to the cast all of these kids on this website are getting, but I was not convinced. Over Memorial day weekend I had a severe gall bladder attack and had to get it removed that Wednesday. This added a whole new aspect to getting treated, because for a while I had to focus on getting my self healthy. That next week we got some very shocking news that I am pregnant, again a whole new aspect. As soon as I was feeling better I put the petal to the metal. I called my doctor and talked to his

assistant. I ask her straight up, " Does he do Mehta Casting?" Her response was, "What on earth is that? I have never heard of it, I will ask him ad get back with you." I told her no thank you we will find someone else. That is when I got on the database here and called every doctor that I thought was close enough to me. That was most of them. I told them my story, sent them e-mails of 's x-rays, and a nice little story saying that I need their help and know that they are one of the only doctor's that could help me. I also sent a few family photos to gain their simpathy. Then it was a waiting game to see would called me back first. Two of them did call me back. Salt Lake City and Philidelphia. I worked with both of them explained my story, told them I needed their help and it was sooo important to get my son in ASAP. Then waited again. Finally, after a trip to Disnaeyland, SAlt Lake City called back

and said they would talk him. I told them I wanted to be on the waiting list and two weeks later we were in. I agree that you should not let your child be the guinea pig for this doctor, and that it is best to go to someone that has been doing this for a while, and has had many successes. If the money is what you are worried about with traveling, it is worth it. We had over $12,000 in medical bills from my surgery, so we know what it is like to struggle with money. A lot of these hospitals do the procedures from nothing, so you have to think how much you are saving there. Please be cautious. I hope this does not get to you too late. Beth Rettinger

Mother Of Rettinger 60+degrees

Scheduled for casting Tuesaday in SLC

From: <kim221998yahoo (DOT) com>Subject: [infantile_scoliosi s] New HereTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, July 15, 2009, 7:00 PM

Hey everyone...I' m Kim...mom to 2 1/2 year old Destiny. She was diagnosed with infantile scoliosis shortly after her first birthday. They put her in a brace for a while to slow down the curving, but it didn't help much. Her last regular appointment she measured at 72 degrees. They were going to do the growing rod surgery on her but because she had problems with bumps on her eyes, they cancelled in. During the time waiting for her eyes to be fixed, she has not been in a brace as they did not prescribe a new one since she was scheduled for surgery, but it ended up taking several months to get anything done. Then one day I ran into her doctor(I work at the hospital) and he said he had sent her films to a doctor's conference a friend of his was attending and they all recommended casting. So we were referred to Children's Hospital in New Orleans(we live in Pensacola, FL). The doctor there believes her to be a great candidate for casting, but says the

casting table they have is to big for her, but he wants to attempt it anyway and just make adustments. So that's where we are now. Tomorrow she is scheduled for her first cast and I'm scared to death. I keep doubting that we made the right choice, but reading some of the stuff I've found online the past few days has been encouraging that maybe it is the right choice. I guess I've come here looking for some support, because this is all really stressing me out. Can't wait to get to know some of you and hear some of your experiences.

Kim

Find me online!

www.myspace. com/kim221998

www.twitter. com/kim221998

[Guest guest]

Hey , Glad to see you made it on here. This is an amazing group. You will learn so much and it is a wonderful support group. Keep your head up!!! Belinda

[infantile_scoliosi s] New HereTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, July 15, 2009, 7:00 PM

Hey everyone...I' m Kim...mom to 2 1/2 year old Destiny. She was diagnosed with infantile scoliosis shortly after her first birthday. They put her in a brace for a while to slow down the curving, but it didn't help much. Her last regular appointment she measured at 72 degrees. They were going to do the growing rod surgery on her but because she had problems with bumps on her eyes, they cancelled in. During the time waiting for her eyes to be fixed, she has not been in a brace as they did not prescribe a new one since she was scheduled for surgery, but it ended up taking several months to get anything done. Then one day I ran into her doctor(I work at the hospital) and he said he had sent her films to a doctor's conference a friend of his was attending and they all recommended casting. So we were referred to Children's Hospital in New Orleans(we live in Pensacola, FL). The doctor there believes her to be a great candidate for casting, but says the casting table they have is to big for her, but he wants to attempt it anyway and just make adustments. So that's where we are now. Tomorrow she is scheduled for her first cast and I'm scared to death. I keep doubting that we made the right choice, but reading some of the stuff I've found online the past few days has been encouraging that maybe it is the right choice. I guess I've come here looking for some support, because this is all really stressing me out. Can't wait to get to know some of you and hear some of your experiences.

Kim

Find me online!

www.myspace. com/kim221998

www.twitter. com/kim221998

[Guest guest]

Hi Steve, welcome!

Our child is 2, we also wash his hair over the kitchen sink- we lay down towels and lie him on the counter, with a rolled up towel under his neck and a water resistant bib and towel covering his front from splashes. We use Burt's Bee's baby wash and shampoo- it's no tears and all in one bottle. We really like the scent and it's gentle.

We also do a sponge bath with baby washcloths and some of the Burt's Bees mixed in warm water in a pot or bowl. We lay a towel on our bed and just wash him on that. Our sweater in cast #2 can actually be pulled up to expose his tummy, so we can wipe his belly button, etc., then pull it back down through. Not all casts can do this, though, our last one couldn't- and you don't want to lose the sweater up there!

If there is a food spot or a pee leak on the sweater, we spot clean with an unscented wipe and a bit of Cetaphil cleanser. It's unscented and I read in a heath column that it has antifungal and antibacterial properties- it's safe and recommended for babies. You can also use the drugstore brand with the same ingedients. It seems to work wonders, it even spot cleaned out a bit of #2 and left no smell.

A big diaper leak involves using both Cetaphil mixed with some of the Burt's Bees, we pull the sweater out as far as possible, mix that combo in with some water and rinse over a small plastic garbage can, then towel dry and blow dry the sweater.

It takes 2 people, one to hold the child and one to wash. You have to be careful not to get the cast wet, and to put towels under the sweater to protect the child's skin from the heat. It helps a ton if you've duct taped the bottom of the cast itself.

You can swtich to a cool setting on the dryer, too, it takes longer, so we sort of switch back and forth, making sure his skin is okay. Most parents say you can't prevent any smell at all, because they sweat under the cast a bit, but this sure helps to keep it at bay. Hope this helps!Heidi, Bexon's Mama, (2 years old, in 2nd cast from Salt Lake City Shriners, currently down from 61 degrees to 29)

Subject: New HereTo: infantile_scoliosis Date: Thursday, July 16, 2009, 10:44 PM

Hi,I am new here, my 2 year old daughter Madison just had her first cast put on yesterday. She was at about 35 degrees before cast and then 15 degrees in the cast. She seems to be doing pretty well with the cast so far. She gets frustrated because she can't move as well as before but I'm sure she will get the hang of her new limitations soon.Does anyone have any bathing tips? or products that can make things easier.Thanks,Steve

[Guest guest]

Or DASH to the max. Certainly begin 1 cup of low sodium V-8 a day at least. Now would be good. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension

My experience from this group is that increase Inspra to 200 and continue K

120 mEq and stop all other drugs ...they don't do anything in PA.

Max.

|

|Hi,

| New to this group, but glad I found it. It's nice to know that my husband

is not

|the only one that had a long road to diagnosis and treatment.

|

|My husband is 42 yo., slightly overweight. Started having severe BP issues

about

|4 years ago out of the blue after being completely healthy. Also started

having

|anxiety and depression at same time. Diagnosed w/ PA 2 years ago after

|undergoing testing/labs for PA. Had to take 120meq of K per day x 6 mo

when

|first dx d/t levels around 2.2. Thankfully His K has been pretty stable

recently on

|20 meq twice daily. He is currently managed by nephrologist. They did a CT

scan

|1.5 years ago and did not see any tumors. Managed w/meds OK (with frequent

|adjustments) until about 6 months ago when nothing he takes seems to work

at

|all except prn clonidine which we recently found out causes rebound

|hypertension. A "good" BP for him lately has been anything below 160/100.

|Spikes often as high as 190 for systolic and 156 for diastolic. Crazy. He

can barely

|make it through the work week, is exhausted and just drained all the time.

|

|His nephrologist order the AVS in Sept. AVS showed the left adrenal

producing

|way excessive amounts of aldosterone. He was referred to surgeon and set

for

|adrenaletcomy in middle of Dec.

|

|So, my only goal in life is to ensure he does not have a stroke between

down and

|then. He has been trying to adapt to the dash diet (admittedly he has some

work

|to do on this). He has a huge family hx of strokes and high BP. HIs

nephrologist

|has been responsive to the need for med changes, but difficulty finding a

combo

|that works. Just added the hydralazine last week which has helped quite a

bit,

|but still having really high spikes. He's currently taking the following

for BP:

|

|inspra 100mg once daily

|atenolol 100mg once daily

|lisinopril 20mg once daily

|imdur 60mg once daily

|hydralazine 40mg three times daily

|clonidine 0.1mg (prn for systolic BP over 160)

|

|Any other recommendations for managing BP until surgery? We are grateful

for

|the light at the end of the tunnel w/adrenalectomy. I read several of the

posts

|here on adrenalectomy stories which have been very helpful.

|

|Thanks!

|

|

|

|

|

[Guest guest]

Just reviewing meds for BP and note that 5 of them do not work well and mayhem even raise BP. See article/ref by Alderman in our files. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension

Hi,

New to this group, but glad I found it. It's nice to know that my husband is not the only one that had a long road to diagnosis and treatment.

My husband is 42 yo., slightly overweight. Started having severe BP issues about 4 years ago out of the blue after being completely healthy. Also started having anxiety and depression at same time. Diagnosed w/ PA 2 years ago after undergoing testing/labs for PA. Had to take 120meq of K per day x 6 mo when first dx d/t levels around 2.2. Thankfully His K has been pretty stable recently on 20 meq twice daily. He is currently managed by nephrologist. They did a CT scan 1.5 years ago and did not see any tumors. Managed w/meds OK (with frequent adjustments) until about 6 months ago when nothing he takes seems to work at all except prn clonidine which we recently found out causes rebound hypertension. A "good" BP for him lately has been anything below 160/100. Spikes often as high as 190 for systolic and 156 for diastolic. Crazy. He can barely make it through the work week, is exhausted and just drained all the time.

His nephrologist order the AVS in Sept. AVS showed the left adrenal producing way excessive amounts of aldosterone. He was referred to surgeon and set for adrenaletcomy in middle of Dec.

So, my only goal in life is to ensure he does not have a stroke between down and then. He has been trying to adapt to the dash diet (admittedly he has some work to do on this). He has a huge family hx of strokes and high BP. HIs nephrologist has been responsive to the need for med changes, but difficulty finding a combo that works. Just added the hydralazine last week which has helped quite a bit, but still having really high spikes. He's currently taking the following for BP:

inspra 100mg once daily

atenolol 100mg once daily

lisinopril 20mg once daily

imdur 60mg once daily

hydralazine 40mg three times daily

clonidine 0.1mg (prn for systolic BP over 160)

Any other recommendations for managing BP until surgery? We are grateful for the light at the end of the tunnel w/adrenalectomy. I read several of the posts here on adrenalectomy stories which have been very helpful.

Thanks!

[Guest guest]

Thanks for your response. He's never been on spiro. Only reason is he was given choice by MD to go w/spiro or inspra and inspra  seemed to have less side effects.Did read your article which was helpful in understanding PA, however have not had an opportunity to share w/his neph. Plan to this week.

Will ask neph for the urine Na and K to see what he needs to on the dash plan and have him start V8.Thank you for getting the info needed to start conversation w/his doctor!

 

Yes have Neph  check urine Na and K to see what he needs to do on the DASH PLAN.  Strong FH of stroke suggests GRA ESP if  I bump on adrenal scans. Eplerenone does is low for severe PA WAS HE EVER on Spiro?  

I can assure you once he begins to DASH TO the max as validAted by urine N and k Bp will become much better and he will feel like a new man. Many of the meds he is on do not work on PA. HAVE you or your Neph  not yet read my evolution of PA Article. If not you will not understand

The problem. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension

 

Hi,

New to this group, but glad I found it. It's nice to know that my husband is not the only one that had a long road to diagnosis and treatment.

My husband is 42 yo., slightly overweight. Started having severe BP issues about 4 years ago out of the blue after being completely healthy. Also started having anxiety and depression at same time. Diagnosed w/ PA 2 years ago after undergoing testing/labs for PA. Had to take 120meq of K per day x 6 mo when first dx d/t levels around 2.2. Thankfully His K has been pretty stable recently on 20 meq twice daily. He is currently managed by nephrologist. They did a CT scan 1.5 years ago and did not see any tumors. Managed w/meds OK (with frequent adjustments) until about 6 months ago when nothing he takes seems to work at all except prn clonidine which we recently found out causes rebound hypertension. A " good " BP for him lately has been anything below 160/100. Spikes often as high as 190 for systolic and 156 for diastolic. Crazy. He can barely make it through the work week, is exhausted and just drained all the time.

His nephrologist order the AVS in Sept. AVS showed the left adrenal producing way excessive amounts of aldosterone. He was referred to surgeon and set for adrenaletcomy in middle of Dec.

So, my only goal in life is to ensure he does not have a stroke between down and then. He has been trying to adapt to the dash diet (admittedly he has some work to do on this). He has a huge family hx of strokes and high BP. HIs nephrologist has been responsive to the need for med changes, but difficulty finding a combo that works. Just added the hydralazine last week which has helped quite a bit, but still having really high spikes. He's currently taking the following for BP:

inspra 100mg once daily

atenolol 100mg once daily

lisinopril 20mg once daily

imdur 60mg once daily

hydralazine 40mg three times daily

clonidine 0.1mg (prn for systolic BP over 160)

Any other recommendations for managing BP until surgery? We are grateful for the light at the end of the tunnel w/adrenalectomy. I read several of the posts here on adrenalectomy stories which have been very helpful.

Thanks!

[Guest guest]

And until surgery, he should DASH 100% because his life depends on it. Salt will kill him. When I was seriously controlling sodium, I ate <800 mg/day. That meant I never ate even a slice of bread. If I had a hamburger, it was without the bun. I was very serious and my urinary sodium was too low to quantitate. For right now, rice, potatoes, vegetables, fruit, meat that is not sodium infused (i.e., has about 60 - 70 mg sodium per serving). I have not found any pork that is not infused and have to look carefully to find chicken and beef that is not infused. I kept track of everything that went into my mouth with FitDay www.fitday.com Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of StudyCircleMy experience from this group is that increase Inspra to 200 and continue K120 mEq and stop all other drugs ...they don't do anything in PA.|Hi,| New to this group, but glad I found it. It's nice to know that my husbandis not|the only one that had a long road to diagnosis and treatment.||My husband is 42 yo., slightly overweight. Started having severe BP issuesabout|4 years ago out of the blue after being completely healthy. Also startedhaving|anxiety and depression at same time. Diagnosed w/ PA 2 years ago after|undergoing testing/labs for PA. Had to take 120meq of K per day x 6 mowhen|first dx d/t levels around 2.2. Thankfully His K has been pretty stablerecently on|20 meq twice daily. He is currently managed by nephrologist. They did a CTscan|1.5 years ago and did not see any tumors. Managed w/meds OK (with frequent|adjustments) until about 6 months ago when nothing he takes seems to workat|all except prn clonidine which we recently found out causes rebound|hypertension. A " good " BP for him lately has been anything below 160/100.|Spikes often as high as 190 for systolic and 156 for diastolic. Crazy. Hecan barely|make it through the work week, is exhausted and just drained all the time.||His nephrologist order the AVS in Sept. AVS showed the left adrenalproducing|way excessive amounts of aldosterone. He was referred to surgeon and setfor|adrenaletcomy in middle of Dec.||So, my only goal in life is to ensure he does not have a stroke betweendown and|then. He has been trying to adapt to the dash diet (admittedly he has somework|to do on this). He has a huge family hx of strokes and high BP. HIsnephrologist|has been responsive to the need for med changes, but difficulty finding acombo|that works. Just added the hydralazine last week which has helped quite abit,|but still having really high spikes. He's currently taking the followingfor BP:||inspra 100mg once daily|atenolol 100mg once daily|lisinopril 20mg once daily|imdur 60mg once daily|hydralazine 40mg three times daily|clonidine 0.1mg (prn for systolic BP over 160)||Any other recommendations for managing BP until surgery? We are gratefulfor|the light at the end of the tunnel w/adrenalectomy. I read several of theposts|here on adrenalectomy stories which have been very helpful.||Thanks!|||||

[Guest guest]

We need some sodium though so I would stick to keeping it at or just under 1500 a day. Many of us when we went too extreme ended up hitting the floor or nearly fainting as the BP got too low.

Subject: RE: new hereTo: hyperaldosteronism Date: Sunday, November 6, 2011, 9:23 PM

And until surgery, he should DASH 100% because his life depends on it. Salt will kill him. When I was seriously controlling sodium, I ate <800 mg/day. That meant I never ate even a slice of bread. If I had a hamburger, it was without the bun. I was very serious and my urinary sodium was too low to quantitate. For right now, rice, potatoes, vegetables, fruit, meat that is not sodium infused (i.e., has about 60 - 70 mg sodium per serving). I have not found any pork that is not infused and have to look carefully to find chicken and beef that is not infused. I kept track of everything that went into my mouth with FitDay www.fitday.com

Val

From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of StudyCircle

My experience from this group is that increase Inspra to 200 and continue K120 mEq and stop all other drugs ...they don't do anything in PA.|Hi,| New to this group, but glad I found it. It's nice to know that my husbandis not|the only one that had a long road to diagnosis and treatment.||My husband is 42 yo., slightly overweight. Started having severe BP issuesabout|4 years ago out of the blue after being completely healthy. Also startedhaving|anxiety and depression at same time. Diagnosed w/ PA 2 years ago after|undergoing testing/labs for PA. Had to take 120meq of K per day x 6 mowhen|first dx d/t levels around 2.2. Thankfully His K has been pretty stablerecently on|20 meq twice daily. He is currently managed by nephrologist. They did a CTscan|1.5 years ago and did not see any tumors. Managed w/meds OK (with frequent|adjustments) until about 6

months ago when nothing he takes seems to workat|all except prn clonidine which we recently found out causes rebound|hypertension. A "good" BP for him lately has been anything below 160/100.|Spikes often as high as 190 for systolic and 156 for diastolic. Crazy. Hecan barely|make it through the work week, is exhausted and just drained all the time.||His nephrologist order the AVS in Sept. AVS showed the left adrenalproducing|way excessive amounts of aldosterone. He was referred to surgeon and setfor|adrenaletcomy in middle of Dec.||So, my only goal in life is to ensure he does not have a stroke betweendown and|then. He has been trying to adapt to the dash diet (admittedly he has somework|to do on this). He has a huge family hx of strokes and high BP. HIsnephrologist|has been responsive to the need for med changes, but difficulty finding acombo|that works. Just added

the hydralazine last week which has helped quite abit,|but still having really high spikes. He's currently taking the followingfor BP:||inspra 100mg once daily|atenolol 100mg once daily|lisinopril 20mg once daily|imdur 60mg once daily|hydralazine 40mg three times daily|clonidine 0.1mg (prn for systolic BP over 160)||Any other recommendations for managing BP until surgery? We are gratefulfor|the light at the end of the tunnel w/adrenalectomy. I read several of theposts|here on adrenalectomy stories which have been very helpful.||Thanks!|||||

[Guest guest]

And Val...you know that NO salt can kill him too, especially if the ticker has some issues. Even all the animals in nature find something to "lick". So moderate is the key. Now when your urine was so low, did you kind of feel it? I know you had a myriad of things going on, but did your pressure get low, or was it actually good for you?

Subject: RE: new hereTo: hyperaldosteronism Date: Sunday, November 6, 2011, 9:23 PM

And until surgery, he should DASH 100% because his life depends on it. Salt will kill him. When I was seriously controlling sodium, I ate <800 mg/day. That meant I never ate even a slice of bread. If I had a hamburger, it was without the bun. I was very serious and my urinary sodium was too low to quantitate. For right now, rice, potatoes, vegetables, fruit, meat that is not sodium infused (i.e., has about 60 - 70 mg sodium per serving). I have not found any pork that is not infused and have to look carefully to find chicken and beef that is not infused. I kept track of everything that went into my mouth with FitDay www.fitday.com

Val

From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of StudyCircle

My experience from this group is that increase Inspra to 200 and continue K120 mEq and stop all other drugs ...they don't do anything in PA.|Hi,| New to this group, but glad I found it. It's nice to know that my husbandis not|the only one that had a long road to diagnosis and treatment.||My husband is 42 yo., slightly overweight. Started having severe BP issuesabout|4 years ago out of the blue after being completely healthy. Also startedhaving|anxiety and depression at same time. Diagnosed w/ PA 2 years ago after|undergoing testing/labs for PA. Had to take 120meq of K per day x 6 mowhen|first dx d/t levels around 2.2. Thankfully His K has been pretty stablerecently on|20 meq twice daily. He is currently managed by nephrologist. They did a CTscan|1.5 years ago and did not see any tumors. Managed w/meds OK (with frequent|adjustments) until about

6 months ago when nothing he takes seems to workat|all except prn clonidine which we recently found out causes rebound|hypertension. A "good" BP for him lately has been anything below 160/100.|Spikes often as high as 190 for systolic and 156 for diastolic. Crazy. Hecan barely|make it through the work week, is exhausted and just drained all the time.||His nephrologist order the AVS in Sept. AVS showed the left adrenalproducing|way excessive amounts of aldosterone. He was referred to surgeon and setfor|adrenaletcomy in middle of Dec.||So, my only goal in life is to ensure he does not have a stroke betweendown and|then. He has been trying to adapt to the dash diet (admittedly he has somework|to do on this). He has a huge family hx of strokes and high BP. HIsnephrologist|has been responsive to the need for med changes, but difficulty finding acombo|that works. Just added

the hydralazine last week which has helped quite abit,|but still having really high spikes. He's currently taking the followingfor BP:||inspra 100mg once daily|atenolol 100mg once daily|lisinopril 20mg once daily|imdur 60mg once daily|hydralazine 40mg three times daily|clonidine 0.1mg (prn for systolic BP over 160)||Any other recommendations for managing BP until surgery? We are gratefulfor|the light at the end of the tunnel w/adrenalectomy. I read several of theposts|here on adrenalectomy stories which have been very helpful.||Thanks!|||||

[Guest guest]

And that is likely playing a major role in why u are doing so well. Guess you. Could test This by going back on a high salt diet for a few days. But don't recommend this. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension

And until surgery, he should DASH 100% because his life depends on it. Salt will kill him. When I was seriously controlling sodium, I ate <800 mg/day. That meant I never ate even a slice of bread. If I had a hamburger, it was without the bun. I was very serious and my urinary sodium was too low to quantitate. For right now, rice, potatoes, vegetables, fruit, meat that is not sodium infused (i.e., has about 60 - 70 mg sodium per serving). I have not found any pork that is not infused and have to look carefully to find chicken and beef that is not infused. I kept track of everything that went into my mouth with FitDay www.fitday.com Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of StudyCircleMy experience from this group is that increase Inspra to 200 and continue K120 mEq and stop all other drugs ...they don't do anything in PA.|Hi,| New to this group, but glad I found it. It's nice to know that my husbandis not|the only one that had a long road to diagnosis and treatment.||My husband is 42 yo., slightly overweight. Started having severe BP issuesabout|4 years ago

out of the blue after being completely healthy. Also startedhaving|anxiety and depression at same time. Diagnosed w/ PA 2 years ago after|undergoing testing/labs for PA. Had to take 120meq of K per day x 6 mowhen|first dx d/t levels around 2.2. Thankfully His K has been pretty stablerecently on|20 meq twice daily. He is currently managed by nephrologist. They did a CTscan|1.5 years ago and did not see any tumors. Managed w/meds OK (with frequent|adjustments) until about 6 months ago when nothing he takes seems to workat|all except prn clonidine which we recently found out causes rebound|hypertension. A "good" BP for him lately has been anything below 160/100.|Spikes often as high as 190 for systolic and 156 for diastolic. Crazy. Hecan barely|make it through the work week, is exhausted and just drained all the time.||His nephrologist order the AVS in Sept. AVS showed the left

adrenalproducing|way excessive amounts of aldosterone. He was referred to surgeon and setfor|adrenaletcomy in middle of Dec.||So, my only goal in life is to ensure he does not have a stroke betweendown and|then. He has been trying to adapt to the dash diet (admittedly he has somework|to do on this). He has a huge family hx of strokes and high BP. HIsnephrologist|has been responsive to the need for med changes, but difficulty finding acombo|that works. Just added the hydralazine last week which has helped quite abit,|but still having really high spikes. He's currently taking the followingfor BP:||inspra 100mg once daily|atenolol 100mg once daily|lisinopril 20mg once daily|imdur 60mg once daily|hydralazine 40mg three times daily|clonidine 0.1mg (prn for systolic BP over 160)||Any other recommendations for managing BP until surgery? We are gratefulfor|the light at the end of

the tunnel w/adrenalectomy. I read several of theposts|here on adrenalectomy stories which have been very helpful.||Thanks!|||||

[Guest guest]

Ah but some will not get BP TO GOAL till they get down to 250 mg which is what we evolved on. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension

We need some sodium though so I would stick to keeping it at or just under 1500 a day. Many of us when we went too extreme ended up hitting the floor or nearly fainting as the BP got too low.

Subject: RE: new hereTo: hyperaldosteronism Date: Sunday, November 6, 2011, 9:23 PM

And until surgery, he should DASH 100% because his life depends on it. Salt will kill him. When I was seriously controlling sodium, I ate <800 mg/day. That meant I never ate even a slice of bread. If I had a hamburger, it was without the bun. I was very serious and my urinary sodium was too low to quantitate. For right now, rice, potatoes, vegetables, fruit, meat that is not sodium infused (i.e., has about 60 - 70 mg sodium per serving). I have not found any pork that is not infused and have to look carefully to find chicken and beef that is not infused. I kept track of everything that went into my mouth with FitDay www.fitday.com

Val

From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of StudyCircle

My experience from this group is that increase Inspra to 200 and continue K120 mEq and stop all other drugs ...they don't do anything in PA.|Hi,| New to this group, but glad I found it. It's nice to know that my husbandis not|the only one that had a long road to diagnosis and treatment.||My husband is 42 yo., slightly overweight. Started having severe BP issuesabout|4 years ago out of the blue after being completely healthy. Also startedhaving|anxiety and depression at same time. Diagnosed w/ PA 2 years ago after|undergoing testing/labs for PA. Had to take 120meq of K per day x 6 mowhen|first dx d/t levels around 2.2. Thankfully His K has been pretty stablerecently on|20 meq twice daily. He is currently managed by nephrologist. They did a CTscan|1.5 years ago and did not see any tumors. Managed w/meds OK (with frequent|adjustments) until about 6

months ago when nothing he takes seems to workat|all except prn clonidine which we recently found out causes rebound|hypertension. A "good" BP for him lately has been anything below 160/100.|Spikes often as high as 190 for systolic and 156 for diastolic. Crazy. Hecan barely|make it through the work week, is exhausted and just drained all the time.||His nephrologist order the AVS in Sept. AVS showed the left adrenalproducing|way excessive amounts of aldosterone. He was referred to surgeon and setfor|adrenaletcomy in middle of Dec.||So, my only goal in life is to ensure he does not have a stroke betweendown and|then. He has been trying to adapt to the dash diet (admittedly he has somework|to do on this). He has a huge family hx of strokes and high BP. HIsnephrologist|has been responsive to the need for med changes, but difficulty finding acombo|that works. Just added

the hydralazine last week which has helped quite abit,|but still having really high spikes. He's currently taking the followingfor BP:||inspra 100mg once daily|atenolol 100mg once daily|lisinopril 20mg once daily|imdur 60mg once daily|hydralazine 40mg three times daily|clonidine 0.1mg (prn for systolic BP over 160)||Any other recommendations for managing BP until surgery? We are gratefulfor|the light at the end of the tunnel w/adrenalectomy. I read several of theposts|here on adrenalectomy stories which have been very helpful.||Thanks!|||||

[Guest guest]

The real test is to lower Na intake till you begin to feel faint when standing then add back a little. For some 1500 mg will do it others will need to go lower. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension

And Val...you know that NO salt can kill him too, especially if the ticker has some issues. Even all the animals in nature find something to "lick". So moderate is the key. Now when your urine was so low, did you kind of feel it? I know you had a myriad of things going on, but did your pressure get low, or was it actually good for you?

Subject: RE: new hereTo: hyperaldosteronism Date: Sunday, November 6, 2011, 9:23 PM

And until surgery, he should DASH 100% because his life depends on it. Salt will kill him. When I was seriously controlling sodium, I ate <800 mg/day. That meant I never ate even a slice of bread. If I had a hamburger, it was without the bun. I was very serious and my urinary sodium was too low to quantitate. For right now, rice, potatoes, vegetables, fruit, meat that is not sodium infused (i.e., has about 60 - 70 mg sodium per serving). I have not found any pork that is not infused and have to look carefully to find chicken and beef that is not infused. I kept track of everything that went into my mouth with FitDay www.fitday.com

Val

From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of StudyCircle

My experience from this group is that increase Inspra to 200 and continue K120 mEq and stop all other drugs ...they don't do anything in PA.|Hi,| New to this group, but glad I found it. It's nice to know that my husbandis not|the only one that had a long road to diagnosis and treatment.||My husband is 42 yo., slightly overweight. Started having severe BP issuesabout|4 years ago out of the blue after being completely healthy. Also startedhaving|anxiety and depression at same time. Diagnosed w/ PA 2 years ago after|undergoing testing/labs for PA. Had to take 120meq of K per day x 6 mowhen|first dx d/t levels around 2.2. Thankfully His K has been pretty stablerecently on|20 meq twice daily. He is currently managed by nephrologist. They did a CTscan|1.5 years ago and did not see any tumors. Managed w/meds OK (with frequent|adjustments) until about

6 months ago when nothing he takes seems to workat|all except prn clonidine which we recently found out causes rebound|hypertension. A "good" BP for him lately has been anything below 160/100.|Spikes often as high as 190 for systolic and 156 for diastolic. Crazy. Hecan barely|make it through the work week, is exhausted and just drained all the time.||His nephrologist order the AVS in Sept. AVS showed the left adrenalproducing|way excessive amounts of aldosterone. He was referred to surgeon and setfor|adrenaletcomy in middle of Dec.||So, my only goal in life is to ensure he does not have a stroke betweendown and|then. He has been trying to adapt to the dash diet (admittedly he has somework|to do on this). He has a huge family hx of strokes and high BP. HIsnephrologist|has been responsive to the need for med changes, but difficulty finding acombo|that works. Just added

the hydralazine last week which has helped quite abit,|but still having really high spikes. He's currently taking the followingfor BP:||inspra 100mg once daily|atenolol 100mg once daily|lisinopril 20mg once daily|imdur 60mg once daily|hydralazine 40mg three times daily|clonidine 0.1mg (prn for systolic BP over 160)||Any other recommendations for managing BP until surgery? We are gratefulfor|the light at the end of the tunnel w/adrenalectomy. I read several of theposts|here on adrenalectomy stories which have been very helpful.||Thanks!|||||

[Guest guest]

Val, Do you have some salt craving? I can hold myself for several days and after that eat the whole pickle or the can of marinated mushrooms. Aftermath is not only feeling badly, but feeling also guilty :-) Natalia To: hyperaldosteronism Sent: Sunday, November 6, 2011 9:37 PMSubject: RE: new here

And Val...you know that NO salt can kill him too, especially if the ticker has some issues. Even all the animals in nature find something to "lick". So moderate is the key. Now when your urine was so low, did you kind of feel it? I know you had a myriad of things going on, but did your pressure get low, or was it actually good for you?

Subject: RE: new hereTo: hyperaldosteronism Date: Sunday, November 6, 2011, 9:23 PM

And until surgery, he should DASH 100% because his life depends on it. Salt will kill him. When I was seriously controlling sodium, I ate <800 mg/day. That meant I never ate even a slice of bread. If I had a hamburger, it was without the bun. I was very serious and my urinary sodium was too low to quantitate. For right now, rice, potatoes, vegetables, fruit, meat that is not sodium infused (i.e., has about 60 - 70 mg sodium per serving). I have not found any pork that is not infused and have to look carefully to find chicken and beef that is not infused. I kept track of everything that went into my mouth with FitDay www.fitday.com

Val

From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of StudyCircle

My experience from this group is that increase Inspra to 200 and continue K120 mEq and stop all other drugs ...they don't do anything in PA.|Hi,| New to this group, but glad I found it. It's nice to know that my husbandis not|the only one that had a long road to diagnosis and treatment.||My husband is 42 yo., slightly overweight. Started having severe BP issuesabout|4 years ago out of the blue after being completely healthy. Also startedhaving|anxiety and depression at same time. Diagnosed w/ PA 2 years ago after|undergoing testing/labs for PA. Had to take 120meq of K per day x 6 mowhen|first dx d/t levels around 2.2. Thankfully His K has been pretty stablerecently on|20 meq twice daily. He is currently managed by nephrologist. They did a CTscan|1.5 years ago and did not see any tumors. Managed w/meds OK (with frequent|adjustments) until

about

6 months ago when nothing he takes seems to workat|all except prn clonidine which we recently found out causes rebound|hypertension. A "good" BP for him lately has been anything below 160/100.|Spikes often as high as 190 for systolic and 156 for diastolic. Crazy. Hecan barely|make it through the work week, is exhausted and just drained all the time.||His nephrologist order the AVS in Sept. AVS showed the left adrenalproducing|way excessive amounts of aldosterone. He was referred to surgeon and setfor|adrenaletcomy in middle of Dec.||So, my only goal in life is to ensure he does not have a stroke betweendown and|then. He has been trying to adapt to the dash diet (admittedly he has somework|to do on this). He has a huge family hx of strokes and high BP. HIsnephrologist|has been responsive to the need for med changes, but difficulty finding acombo|that works. Just added

the hydralazine last week which has helped quite abit,|but still having really high spikes. He's currently taking the followingfor BP:||inspra 100mg once daily|atenolol 100mg once daily|lisinopril 20mg once daily|imdur 60mg once daily|hydralazine 40mg three times daily|clonidine 0.1mg (prn for systolic BP over 160)||Any other recommendations for managing BP until surgery? We are gratefulfor|the light at the end of the tunnel w/adrenalectomy. I read several of theposts|here on adrenalectomy stories which have been very helpful.||Thanks!|||||

[Guest guest]

Update: My husband has been faithfully doing the DASH diet @1000mg-1200mg/day and V-8 x 2 days (which I know is not long enough to have a huge difference). Tolerating well. Lots of plain baked potatoes, salad, almonds and eggs. It's hard to believe how much sodium is in food until you really look. I have always looked at fat and calories on food labels, but never really gave sodium too much thought. Will try to see if he can tolerate a little less sodium every few days. His BP has been still really high in the morning which it always is (183/121 this morning) but much more stable during the day with fewer spikes (averaging 145/90) which is MUCH improved. Will keep you posted, but thanks for all the great advice. Maybe he can even get off of some of the meds pre-surgery!

Anyone else have the issue w/extremely high BP when waking up in the morning? Is that common w/hyperaldosteronism an/or just HTN in general?

 

,I think for someone on 6 - 7 BP medicines and raging HTN, waiting for surgery, can afford very, very low salt.  I think the Rice Diet is only 250 mg/d.  He can easily get enough  sodium that naturally occurs in food.  I think celery is pretty high sodium.

 I have excess aldosterone but I don't know if it is PA and don't know if it is permanent.  On so little sodium, my BP still ran about 152.  Before I got on Lyme treatment, a salty meal caused paralysis in the night and intense anxiety.  Dr. Grim probably remembers how I used to frequently write about being " brittle. " ( I've been here for about a hundred years.)    Now, I can eat quite a bit of salt and have never had the paralysis since.  I still occasionally have " brittles " from eating too much salt.  On Lyme treatment, my BP has nearly constantly fallen and my ingestion of Inspra (spiro) is now only 25% of where it was.  I'm thinking my serious reaction to sodium had something to do with Lyme, but will never know.

 Val

 _______________________________________________________________________________________________________

Female, hypothyroidism, hyperparathyroidism, hyperaldosterone (all endocrine, BTW), and Lyme + HTN that have responded very well to IV antibiotics; breast cancer caught early and probably cured.

  

From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Bingham

  And Val...you know that NO salt can kill him too, especially if the ticker has some issues. Even all the animals in nature find something to " lick " . So moderate is the key. Now when your urine was so low, did you kind of feel it? I know you had a myriad of things going on, but did your pressure get low, or was it actually good for you?

And until surgery, he should DASH 100% because his life depends on it.  Salt will kill him.  When I was seriously controlling sodium, I ate <800 mg/day.  That meant I never ate even a slice of bread.  If I had a hamburger, it was without the bun.  I was very serious and my urinary sodium was too low to quantitate.  For right now, rice, potatoes, vegetables, fruit, meat that is not sodium infused (i.e., has about 60 - 70 mg sodium per serving).  I have not found any pork that is not infused and have to look carefully to find chicken and beef that is not infused.  I kept track of everything that went into my mouth with FitDay www.fitday.com

 ||

[Guest guest]

,

I had lots of high bp reading in the mornings....when I had tests with the cardo doc my bp was very high...he wanted a stress test, they wouldnt put me in the treadmill because my bp was high.( 160ish/110ish)....they gave me this shot and I didnt like it.....so he told me I could take one of my bp pills then he asked me if I took my bp meds the night before....ummmm yeah!!!!!

() Marie51 w f Florida, AVS showed unilateral on the left Adrenal.....Laparoscopy left adrenal December 15, 2010, doing much better...heart valve leakage.... had LVH before surgery do not have it now.....

Re: new here

Update: My husband has been faithfully doing the DASH diet @1000mg-1200mg/day and V-8 x 2 days (which I know is not long enough to have a huge difference). Tolerating well. Lots of plain baked potatoes, salad, almonds and eggs. It's hard to believe how much sodium is in food until you really look. I have always looked at fat and calories on food labels, but never really gave sodium too much thought. Will try to see if he can tolerate a little less sodium every few days. His BP has been still really high in the morning which it always is (183/121 this morning) but much more stable during the day with fewer spikes (averaging 145/90) which is MUCH improved. Will keep you posted, but thanks for all the great advice. Maybe he can even get off of some of the meds pre-surgery!

Anyone else have the issue w/extremely high BP when waking up in the morning? Is that common w/hyperaldosteronism an/or just HTN in general?

,

I think for someone on 6 - 7 BP medicines and raging HTN, waiting for surgery, can afford very, very low salt. I think the Rice Diet is only 250 mg/d. He can easily get enough sodium that naturally occurs in food. I think celery is pretty high sodium.

I have excess aldosterone but I don't know if it is PA and don't know if it is permanent. On so little sodium, my BP still ran about 152. Before I got on Lyme treatment, a salty meal caused paralysis in the night and intense anxiety. Dr. Grim probably remembers how I used to frequently write about being "brittle." ( I've been here for about a hundred years.) Now, I can eat quite a bit of salt and have never had the paralysis since. I still occasionally have "brittles" from eating too much salt. On Lyme treatment, my BP has nearly constantly fallen and my ingestion of Inspra (spiro) is now only 25% of where it was. I'm thinking my serious reaction to sodium had something to do with Lyme, but will never know.

Val

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Female, hypothyroidism, hyperparathyroidism, hyperaldosterone (all endocrine, BTW), and Lyme + HTN that have responded very well to IV antibiotics; breast cancer caught early and probably cured.

From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Bingham

And Val...you know that NO salt can kill him too, especially if the ticker has some issues. Even all the animals in nature find something to "lick". So moderate is the key. Now when your urine was so low, did you kind of feel it? I know you had a myriad of things going on, but did your pressure get low, or was it actually good for you?

And until surgery, he should DASH 100% because his life depends on it. Salt will kill him. When I was seriously controlling sodium, I ate <800 mg/day. That meant I never ate even a slice of bread. If I had a hamburger, it was without the bun. I was very serious and my urinary sodium was too low to quantitate. For right now, rice, potatoes, vegetables, fruit, meat that is not sodium infused (i.e., has about 60 - 70 mg sodium per serving). I have not found any pork that is not infused and have to look carefully to find chicken and beef that is not infused. I kept track of everything that went into my mouth with FitDay www.fitday.com

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[Guest guest]

Husband is on day 6 of DASH, V8, high K diet. Highest morning BP (upon waking) has been 140/100 (down from 170/115). Daytime BP's for the first time in YEARS in the 120-130/80-90 range (was rarely below 160/100 during the day). He feels great I am SO relieved that his BP is stable. Working on weaning off of BP meds (except Inspra). Less than a month until adrenalectomy and grateful his BP is now stable going into surgery. Will keep you posted, but wanted to update and thank you!

 

Suspect he needs more eplere and diet K and less Na. Many of themeds uHe is on don't work IN. PA and most can control BP WITH only MCB and DASH

May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension

 

Thanks for your response. He's never been on spiro. Only reason is he was given choice by MD to go w/spiro or inspra and inspra  seemed to have less side effects.Did read your article which was helpful in understanding PA, however have not had an opportunity to share w/his neph. Plan to this week.

Will ask neph for the urine Na and K to see what he needs to on the dash plan and have him start V8.Thank you for getting the info needed to start conversation w/his doctor!

 

Yes have Neph  check urine Na and K to see what he needs to do on the DASH PLAN.  Strong FH of stroke suggests GRA ESP if  I bump on adrenal scans. Eplerenone does is low for severe PA WAS HE EVER on Spiro?  

I can assure you once he begins to DASH TO the max as validAted by urine N and k Bp will become much better and he will feel like a new man. Many of the meds he is on do not work on PA. HAVE you or your Neph  not yet read my evolution of PA Article. If not you will not understand

The problem. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension

 

Hi,

New to this group, but glad I found it. It's nice to know that my husband is not the only one that had a long road to diagnosis and treatment.

My husband is 42 yo., slightly overweight. Started having severe BP issues about 4 years ago out of the blue after being completely healthy. Also started having anxiety and depression at same time. Diagnosed w/ PA 2 years ago after undergoing testing/labs for PA. Had to take 120meq of K per day x 6 mo when first dx d/t levels around 2.2. Thankfully His K has been pretty stable recently on 20 meq twice daily. He is currently managed by nephrologist. They did a CT scan 1.5 years ago and did not see any tumors. Managed w/meds OK (with frequent adjustments) until about 6 months ago when nothing he takes seems to work at all except prn clonidine which we recently found out causes rebound hypertension. A " good " BP for him lately has been anything below 160/100. Spikes often as high as 190 for systolic and 156 for diastolic. Crazy. He can barely make it through the work week, is exhausted and just drained all the time.

His nephrologist order the AVS in Sept. AVS showed the left adrenal producing way excessive amounts of aldosterone. He was referred to surgeon and set for adrenaletcomy in middle of Dec.

So, my only goal in life is to ensure he does not have a stroke between down and then. He has been trying to adapt to the dash diet (admittedly he has some work to do on this). He has a huge family hx of strokes and high BP. HIs nephrologist has been responsive to the need for med changes, but difficulty finding a combo that works. Just added the hydralazine last week which has helped quite a bit, but still having really high spikes. He's currently taking the following for BP:

inspra 100mg once daily

atenolol 100mg once daily

lisinopril 20mg once daily

imdur 60mg once daily

hydralazine 40mg three times daily

clonidine 0.1mg (prn for systolic BP over 160)

Any other recommendations for managing BP until surgery? We are grateful for the light at the end of the tunnel w/adrenalectomy. I read several of the posts here on adrenalectomy stories which have been very helpful.

Thanks!