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Cordelia
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« on: October 17, 2011, 11:40:12 AM »

Are any of you on cholesterol-lowering medications because you are on dialysis even though your cholesterol levels are fine?
« Last Edit: October 17, 2011, 11:43:45 AM by Cordelia » Logged

Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
thegrammalady
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« Reply #1 on: October 17, 2011, 11:42:45 AM »

i'm on medication, but my levels are a touch high. it was prescribed by my gp, not my neph.
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If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

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Cordelia
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« Reply #2 on: October 17, 2011, 11:50:17 AM »

My levels are perfect, so a neph in my unit says, (not my primary neph) he wants to put me on choloesterol meds even though my blood labs for cholesterol are just fine and dandy.

He wants to put me on zocor, just because supposed studies have been done and said that it's safter for a dialysis patient to be on this drug because of dialysis patients developing coronary disease. I understand it could be for "preventative" reasons, but really, since my labs are perfect, I don't see where a nephrologist can justtify that, "Just because there were studies done"

I'm very angry about this. I have had nasty reactions to changing so much as a blood pressure pill and suffered badly from the side effects. I don't eat a huge amount of fatty foods, either.

Everytime I see this !@#$ doctor about every 6 months, he's trying to change something, I've nicknamed him a pillpusher to people in my family and my friends. No other neph is doing this to me, just him.   >:(

I could totally understand if my levels were slightly elevated. This is really bothering me. This doctor doesn't know me well at all, he's not my primary nephrolgist, by any means. He does his "rounds" about twice a year in my unit.   

Thanks for letting me vent.    :grouphug;

« Last Edit: October 17, 2011, 01:57:55 PM by Cordelia » Logged

Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
thegrammalady
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« Reply #3 on: October 17, 2011, 11:54:05 AM »

vent away! and tell the doctor "no way" he can't force you to take anything!
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s
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If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

Meddle Not In The Affairs Of Dragons
For You Are Crunchy And Taste Good With Ketchup
Joe
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« Reply #4 on: October 17, 2011, 12:08:45 PM »

While I typically defer to my neph, his doctorate is in medicine, mine's in computer science, every once in a while I've told him no. If my logic is sound for telling him no, he usually defers to me. If he can convince me otherwise, I go with him. As I see it, it's a partnership we're working on here.
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Cordelia
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« Reply #5 on: October 17, 2011, 01:32:47 PM »

Thanks thegrammalady    :grouphug;   

Joe, I didn't say 'no' and I didn't say 'yes' ....

I explained my concerns to him...........

He said to me, "Think about it" and walked out of the room.       ::)
« Last Edit: October 17, 2011, 01:35:37 PM by Cordelia » Logged

Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
MooseMom
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« Reply #6 on: October 17, 2011, 01:48:17 PM »

Who IS this guy?

You are not his patient; you are A patient.

He is not your neph; he is A neph.

I think it's a bit unprofessional and irresponsible for him to just mindlessly start messing with your meds in this way.  You are not stupid.  You ask valid questions, but he doesn't supply you with reasonable replies.

You have to ask why dialysis patients so often develop cardiac disease.  One main reason is high serum phosphorus levels; this leads to the calcification of blood vessels.  If you keep your phosphorus within normal range, along with your calcium and PTH, then you lower your risk.  And if your cholesterol is normal, I really don't see the point of Zocor.  These statins are effective but they have their own side effects, so they need to be used with caution.

Don't say yes unless and until you are very sure and have done your research.

(BTW, I'm on Zocor, but I really need it!  So I am not against the use of statins, per se; they are very important drugs for the renal community, but first the real NEED must be established.)
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Cordelia
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« Reply #7 on: October 17, 2011, 03:38:38 PM »

I thought the exact, very same things as you, MM! I totally think it's unprofessional for him to do that. Everytime I see the man, he's trying to change something. I'm tired of it. I reallly am.

Yup, I asked perfectly valid questions and he didn't supply reasonable explanations.

My phospher levels are within the 'safe range' as long as I take my binders religiously and watch what I eat, they don't get too high.

I've looked at this cholesterol medication from every angle, and I clearly just do not see the point.

I have suffered from severe leg cramps from just changing my bp meds and that made me absolutely miserable.    >:(    That was a only a few weeks ago.    ::)

I clearly understand where you're coming from when you say the real NEED must be established!    :thumbup;  He has failed to do that.   
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
sullidog
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« Reply #8 on: October 17, 2011, 04:51:58 PM »

time to find a new neph!
Never heard such crap in my dialysis life.
If I told my neph this he'd say that neph is full of sh*t!
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May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
august 25, 2009, access placement
January 16, 2010 thrombectomy was done on access
monrein
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Might as well smile

« Reply #9 on: October 17, 2011, 05:23:16 PM »

I was only put on statins once my cholesterol and lipids became elevated.   
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
Cordelia
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« Reply #10 on: October 17, 2011, 05:26:21 PM »

Unfortunately, because I'm at what's called a 'satellite' unit, a team of about 6 nephrologists, rotate and take turns. Each covers for one month at a time, over the phone but only visit once a month. I'm stuck with this guy when he does his twice yearly rounds at my hospital. I agree with you, Sulli, I sure wish I could have a different one! I do much prefer my own neph when mine comes in for his twice yearly rounds too.

Me too, I thought the same thing, never heard such ridiculous crap in all my 14 months of dialysis life, either!     :boxing;     :rant;

Monrein, thanks for letting me know your situation too. I'm getting the sensing feeling here so far is that one should really only go on statins if deemed absolutely necessary.
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Sax-O-Trix
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« Reply #11 on: October 17, 2011, 07:04:15 PM »

I am not on dialysis, but was on 80 mgs of Zocor for 12 years... Yeah, I know, they just said 80 mgs long-term is not a good idea, lol.  Perhaps it contributed to my CKD.   I just switched to 40 mgs. of Crestor.  Statins are not candy and can have very serious side-effects.  I would NOT take them if I did not have genetically high cholesterol, which is now even higher (over 300 at times) because of post-transplant drugs. 

You thought about the 2x a year nephs suggestion .  You won't see this guy for another 6 months.  Will he follow through and try to give you the script?  If not, I'd ignore the suggestion and wait to speak with your real neph about it the next time you see him. 
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Preemptive transplant recipient, living donor (brother)- March 2011
Cordelia
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« Reply #12 on: October 18, 2011, 03:14:07 AM »

Hi Sax-O-Trix,

I agree. They can have very serious side effects. I agree, why go there, if its not necessary? I'm thinking the same thing......

Hmmmm I've been thinking about the scenario with the script. I'm sure he'll raise the question again once I see him. I am planning to say no and explain my reasons why.
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
monrein
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« Reply #13 on: October 18, 2011, 05:25:38 AM »

Also say that you agree that it's an important and serious issue and you'll have your cholesterol checked as often as they like and then do something.  You might also suggest that you would take fish oil supplements (excellent for cardiac health) in the meantime.  Good quality fish oil can be expensive but it really is an excellent thing for us all to take and it controlled my cholesterol levels for a good two years post trx, after they already showed signs of rising.  My neph agreed that we would delay the statins if the oil worked.  I'm now on Prevastatin but still take high potency fish oil every day, twice a day.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
mcclane
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« Reply #14 on: October 18, 2011, 07:47:47 AM »

i'm on 2 kinds of cholesterol meds, both max doses too.

I've been taking those meds for gods knows how long now, I think ever since I was on pd years ago.  They never lowered my cholesterol meds even with my first transplant.  I figure by now my body is soooo royally screwed up that it doesn't matter anymore. :rofl;
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Cordelia
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« Reply #15 on: October 18, 2011, 12:29:19 PM »

Never thought of fishoil, thanks for the idea, I'll definitely keep it in mind, Monrein!   :thumbup; 

I'm so sorry to hear that, Mcclane.   :cuddle;     So, if your levels are elevated pre transplant and then once going on the anti-rejection meds, the choloesterol rises?       :(
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
mcclane
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« Reply #16 on: October 18, 2011, 12:41:02 PM »

Never thought of fishoil, thanks for the idea, I'll definitely keep it in mind, Monrein!   :thumbup; 

I'm so sorry to hear that, Mcclane.   :cuddle;     So, if your levels are elevated pre transplant and then once going on the anti-rejection meds, the choloesterol rises?       :(

I honestly can't remember, I think so, the immunosuppressants cause cholesterol levels to rise, hence the cholesterol meds.
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malaka
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« Reply #17 on: October 18, 2011, 12:42:33 PM »

I'm predialysis, so I don't know if this information is valid for you or not.  I tried Lipitor, but couldn't take it as it showing bad muscle/heart enzyme levels with mel.  So, is fish oil per the nephro and his rx of Welchol which lowers cholesterol in a different way than statins do. Damn horse pills, but no bad side effects so far.
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Cordelia
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« Reply #18 on: October 18, 2011, 03:56:28 PM »

Thanks, Mcclane    :cuddle;

Malaka, I've never heard of Welchol, either.

My husband's step dad is taking Lipitor, I'm familiar with that one.
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
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