lots of intriguing info from a welll educated patient

[Guest guest]

Re: New here and needing support

Hello Debbie

I'm not surprised that the CHF appeared to disappear after discontinuing Avandia. CHF is basically a tipping point, at a certain point, your heart won't be able to provide the blood flow that's being asked of it so it enlarges in order to pump more blood but an enlarged heart is less efficient hence less blood gets pumped ( that's what Ejection Fraction measures, the percentage of the volume in the left ventricle that actually gets pumped out with each beat ), if less gets pumped out, the heart will enlarge more as it has not met the demands and the whole thing spirals out of control. If matters can be brought back on the safe side of the tipping point and you haven't been in CHF too long, then things are good. Stopping the Avandia probably brought you back from the edge of the cliff. Going onto a low sodium diet will probably help big time as sodium causes fluid retention hence forcing the heart to work harder, the average North American diet has 12,000 mg of sodium per day but you shouldn't have more than 2,000 mg of sodium per day.

I'm a bit surprised that they did a stress/echo as an emergency procedure instead of just an echocardiogram. It was about two years before they would risk putting me through the stress portion of a stress/echo, initially I was instructed to not walk more than ten minutes nor lift more than ten pounds which is difficult when it takes longer than that to cross a parking lot and a laptop weighs more than ten pounds. Even now, I think they cut out the stress part short of the mark just to be on the safe side.

I think that they can't tell how close you are to having CHF, just when you're already pretty bad off. Of course, it's nice to hear them say that they can't find any indications of CHF. My last stress/echo report simply said "appears normal with some evidence of left ventricle enlargement".

I would also add "google everything" to your Aunt's advice. The Doctor's just want to see as many patients in a day to increase their billables, no one is going to actually monitor your condition except yourself. Particularly with CHF, the developments in treatment are all very recent; most Doctors would just have outdated information and how often does a GP actually get a CHF patient who's not 95 years old? My GP and even my sister who's also a GP thought I was a goner and would be dead within two years (that was six years ago) but my Cardiologist who had been following the latest news on the subject was reluctant to make any predictions whatsoever, probably an indication of his greater experience and wisdom. When I researched on the net, I found out that the drug regime that he put me on were based on very early preliminary tests and at that time had not been the accepted treatment though it became the accepted treatment within a year.

The pen for Lantus is the Opticlick, there's another one that's available in other countries that's somewhat slimmer, mechanical rather than electronic and I think it's called the autopen. The Opticlick is not available for purchase, the manufacturer will give the Doctor a sample and it's up to the Doctor to hand it out to one of his/her patients, the excuse being that the Doctor can train you on how it works but I would imagine that they have less liability if they don't sell it. It comes with an instructional DVD, a carry case and a sample set of needles. The cartridges are much more expensive than the vials but are convenient in that they only have 3ml each so you don't have to worry about using them up before they go bad. Because the Opticlick is electronic, you can't put it in the refrigerator nor can you get it wet. Frio sells a special travel sleeve with a nylon sleeve to separate the Opticlick from the bulk of the travel sleeve so that it doesn't get wet from the evaporative layers, it still gets a bit wet but I haven't had any problems with it. It's tempting to try and get an autopen since it would fit standard travel bags better and could be refrigerated but that would mean getting a Canadian Doctor to prescribe it and so many Americans had gone to Canadian Doctors without paying that they now charge something like $160 just for a Doctor's visit if you live in the States (used to be $40 if you lived state side, they're not allowed to charge any kind of co-pay to Canadian residents), besides the autopen would also have to be purchased.

Regards,

On Dec 18, 2007, at 12:38 AM, Debstar wrote:

Well, , I went to my family Dr and he put me back on Prozac. It is a good one that worked great for me, unfortunatley for me my great therapist passed in her sleep 2 years ago feb at the tender age of 52. And never found a good one since. I am going to a diabetes education with my husband on WEdnesday, and she has the name of a therapist that specializes in helping those that are chronically ill.

What happened was they did a an emergency stress and echo, and found the enlargement. The cardiologist that came to see me in the observation unit found the water retention and the water in my lungs the same way, listening. She told me the beginning of CHF. And to go off the avandia and see if it goes away.

Well surprise, my Dr (family one for 18 years) said he sees no CHF it appeared to be that with the water in the lungs at first (funny it disappeared with the absence of the Avandia for me but no Dr seems to notice that). He is checking to get my labs from the new endo, and see why they say I have a severe Vit D defecency enough to take 50,000 IU's for 28 days. I took them 2 days and felt more sick, so I called my aunt (she is 72 and has been the family med advisor for my whole life) and she said ask all the questions you need and don't ever take ANYTHING unless your questions are all satisfied. I think that is good advise. So no more til I hear a second opinion. I never heard a first just a call from a med assistant to ask for the pharmacy to call it in to.

Also I need a sleep test, to see if I have sleep apena. My Dr said try to go without the reg oxygen and I did one night, and felt horrible so I will keep on it, I am scared without it, I do feel clogged up and hoarse etc, in the morning after no oxygen. That is why he said if I want to, to try without it, but don't send the machine back unless I am sure I am fine without it.

Also I am THRILLED to be bloaty from the surgery, I tried to go shopping for a pretty new shirt after losing 18 pounds. Unfortunately my tummy is bigger. All I can think is I still have swelling from all the trama of surgery and the gas they pump you up with to remove the gall bladder, they said mine was bad and I was sick a long time before the removal.

I also want to say I am on Lantus, and Novalog. I know they make a pen for the Lantus I would like to see why I can't use that? The syringe drive me nuts, but the pen I can handle. I do also just stick and bear with it. I tried moving it once, but the needle is dull by then and it just plain stings anyways.

I also have special needs kids, and an 11 year old. It is hard for them too. The night home from the ob at ER, I just peeled up my jammie sleeve to peel off the tape from the iv, and my daugher (eleven and tender hearted) started crying a lot, I didn't realize my arm was bruised and it had the needle marks, etc all that lovely trama they do to you with EMT's hospitals etc. Also when I got the oxygen, she slowly backed away from me. She is used to it now, but it is sure hard with younger kids I spend my time smiling and pretending to them it is not so bad so they are not scared.

The helicopter ride is over rated, when you are in severe pain then on moriphine, but being in Utah, flying over the mountains in a windstomr was not my cup of tea. I can think of a lot of things I'd rather do with that money. And as for the expenses, my husband collects them up and says don't worry about it, I will take care of it. Well I know our money was bad before all this, but I will leave it for now, he is being over protective, and I am sure feels now he can see how easily he could lose me.

Debbie Bullock

AVON Independent Sales Representative

AVON Beauty Advisor

Unit Leader

harleydiva.debbiegmail

www.youravon.com/dbullock

RECENT ACTIVITY

7

New MembersVisit Your Group

Get cancer support

Connect w/ others

find help & share

FruitaBü Group

A Parent´s Place

to share ideas on

family cooking.

Health

Looking for Love?

Find relationship

advice and answers.

..

[Guest guest]

whoops meant to send to me to keep with different header

sorry, Jean

Re: New here and needing support

Hello Debbie

I'm not surprised that the CHF appeared to disappear after discontinuing Avandia. CHF is basically a tipping point, at a certain point, your heart won't be able to provide the blood flow that's being asked of it so it enlarges in order to pump more blood but an enlarged heart is less efficient hence less blood gets pumped ( that's what Ejection Fraction measures, the percentage of the volume in the left ventricle that actually gets pumped out with each beat ), if less gets pumped out, the heart will enlarge more as it has not met the demands and the whole thing spirals out of control. If matters can be brought back on the safe side of the tipping point and you haven't been in CHF too long, then things are good. Stopping the Avandia probably brought you back from the edge of the cliff. Going onto a low sodium diet will probably help big time as sodium causes fluid retention hence forcing the heart to work harder, the average North American diet has 12,000 mg of sodium per day but you shouldn't have more than 2,000 mg of sodium per day.

I'm a bit surprised that they did a stress/echo as an emergency procedure instead of just an echocardiogram. It was about two years before they would risk putting me through the stress portion of a stress/echo, initially I was instructed to not walk more than ten minutes nor lift more than ten pounds which is difficult when it takes longer than that to cross a parking lot and a laptop weighs more than ten pounds. Even now, I think they cut out the stress part short of the mark just to be on the safe side.

I think that they can't tell how close you are to having CHF, just when you're already pretty bad off. Of course, it's nice to hear them say that they can't find any indications of CHF. My last stress/echo report simply said "appears normal with some evidence of left ventricle enlargement".

I would also add "google everything" to your Aunt's advice. The Doctor's just want to see as many patients in a day to increase their billables, no one is going to actually monitor your condition except yourself. Particularly with CHF, the developments in treatment are all very recent; most Doctors would just have outdated information and how often does a GP actually get a CHF patient who's not 95 years old? My GP and even my sister who's also a GP thought I was a goner and would be dead within two years (that was six years ago) but my Cardiologist who had been following the latest news on the subject was reluctant to make any predictions whatsoever, probably an indication of his greater experience and wisdom. When I researched on the net, I found out that the drug regime that he put me on were based on very early preliminary tests and at that time had not been the accepted treatment though it became the accepted treatment within a year.

The pen for Lantus is the Opticlick, there's another one that's available in other countries that's somewhat slimmer, mechanical rather than electronic and I think it's called the autopen. The Opticlick is not available for purchase, the manufacturer will give the Doctor a sample and it's up to the Doctor to hand it out to one of his/her patients, the excuse being that the Doctor can train you on how it works but I would imagine that they have less liability if they don't sell it. It comes with an instructional DVD, a carry case and a sample set of needles. The cartridges are much more expensive than the vials but are convenient in that they only have 3ml each so you don't have to worry about using them up before they go bad. Because the Opticlick is electronic, you can't put it in the refrigerator nor can you get it wet. Frio sells a special travel sleeve with a nylon sleeve to separate the Opticlick from the bulk of the travel sleeve so that it doesn't get wet from the evaporative layers, it still gets a bit wet but I haven't had any problems with it. It's tempting to try and get an autopen since it would fit standard travel bags better and could be refrigerated but that would mean getting a Canadian Doctor to prescribe it and so many Americans had gone to Canadian Doctors without paying that they now charge something like $160 just for a Doctor's visit if you live in the States (used to be $40 if you lived state side, they're not allowed to charge any kind of co-pay to Canadian residents), besides the autopen would also have to be purchased.

Regards,

On Dec 18, 2007, at 12:38 AM, Debstar wrote:

Well, , I went to my family Dr and he put me back on Prozac. It is a good one that worked great for me, unfortunatley for me my great therapist passed in her sleep 2 years ago feb at the tender age of 52. And never found a good one since. I am going to a diabetes education with my husband on WEdnesday, and she has the name of a therapist that specializes in helping those that are chronically ill.

What happened was they did a an emergency stress and echo, and found the enlargement. The cardiologist that came to see me in the observation unit found the water retention and the water in my lungs the same way, listening. She told me the beginning of CHF. And to go off the avandia and see if it goes away.

Well surprise, my Dr (family one for 18 years) said he sees no CHF it appeared to be that with the water in the lungs at first (funny it disappeared with the absence of the Avandia for me but no Dr seems to notice that). He is checking to get my labs from the new endo, and see why they say I have a severe Vit D defecency enough to take 50,000 IU's for 28 days. I took them 2 days and felt more sick, so I called my aunt (she is 72 and has been the family med advisor for my whole life) and she said ask all the questions you need and don't ever take ANYTHING unless your questions are all satisfied. I think that is good advise. So no more til I hear a second opinion. I never heard a first just a call from a med assistant to ask for the pharmacy to call it in to.

Also I need a sleep test, to see if I have sleep apena. My Dr said try to go without the reg oxygen and I did one night, and felt horrible so I will keep on it, I am scared without it, I do feel clogged up and hoarse etc, in the morning after no oxygen. That is why he said if I want to, to try without it, but don't send the machine back unless I am sure I am fine without it.

Also I am THRILLED to be bloaty from the surgery, I tried to go shopping for a pretty new shirt after losing 18 pounds. Unfortunately my tummy is bigger. All I can think is I still have swelling from all the trama of surgery and the gas they pump you up with to remove the gall bladder, they said mine was bad and I was sick a long time before the removal.

I also want to say I am on Lantus, and Novalog. I know they make a pen for the Lantus I would like to see why I can't use that? The syringe drive me nuts, but the pen I can handle. I do also just stick and bear with it. I tried moving it once, but the needle is dull by then and it just plain stings anyways.

I also have special needs kids, and an 11 year old. It is hard for them too. The night home from the ob at ER, I just peeled up my jammie sleeve to peel off the tape from the iv, and my daugher (eleven and tender hearted) started crying a lot, I didn't realize my arm was bruised and it had the needle marks, etc all that lovely trama they do to you with EMT's hospitals etc. Also when I got the oxygen, she slowly backed away from me. She is used to it now, but it is sure hard with younger kids I spend my time smiling and pretending to them it is not so bad so they are not scared.

The helicopter ride is over rated, when you are in severe pain then on moriphine, but being in Utah, flying over the mountains in a windstomr was not my cup of tea. I can think of a lot of things I'd rather do with that money. And as for the expenses, my husband collects them up and says don't worry about it, I will take care of it. Well I know our money was bad before all this, but I will leave it for now, he is being over protective, and I am sure feels now he can see how easily he could lose me.

Debbie Bullock

AVON Independent Sales Representative

AVON Beauty Advisor

Unit Leader

harleydiva.debbiegmail

www.youravon.com/dbullock

RECENT ACTIVITY

7

New MembersVisit Your Group

Get cancer support

Connect w/ others

find help & share

FruitaBü Group

A Parent´s Place

to share ideas on

family cooking.

Health

Looking for Love?

Find relationship

advice and answers.

..