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Author Topic: Swelling in my legs is gone!!!  (Read 2658 times)
beachbum
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« on: January 16, 2012, 08:24:08 AM »

I've had really bad swelling in my legs for the past year. It's been so bad I could barely get my shoes on. I also live right across the street from the beach but I couldn't wear shorts all summer because my legs looked like elephant legs. I had been trying to tell my doctors that it's the Norvasc causing all the swelling but they wouldn't listen. My doctor prescribed me a new BP medication because my BP was still too high even after I started D. I noticed my BP was getting too low and I wasn't feeling well so I stopped the Norvasc and continued to monitor my BP a couple times a day.

I'm happy to say my BP has been better than it has been in years and my legs are finally returning to normal! My typical BP before I quit Norvasc was 140/95 and now it's 122/78. I know doctors hate it when patients adjust their own meds or don't take their advice but sometimes the patient has to do what's best for themselves. I was putting my health at risk and dealing with swollen legs. My only worry is I'm trying to get listed and I don't want to be known as noncompliant. Am I doing the right thing? Should I tell my doctors I switched my meds on my own?
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Rain
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« Reply #1 on: January 16, 2012, 08:56:48 AM »

you sometimes have to do what is right for you.  I've adjusted my own meds then told the doc after the fact,
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1988  Diagnosed with reflux and kidney damage
2006-  Diagnosed with Renal Failure and start dialysis in centre with catheter
2007- Fistula created and in centre hemo with fistula
2012- Fistula clotted and central line inserted
May 2014- Received Kidney from deceased donor
lmunchkin
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"There Is No Place Like Home!"

« Reply #2 on: January 16, 2012, 08:57:54 AM »

Howdy Beachbum!  I would not tell Drs anything, as long as you are monitoring frequently.  If BP gets too high, then take a pill.  But only after Dialysising.  If they say things are looking good, just tell them its because of their care!!! Of course, you will know why, but telling them may seem non-compliant, so I wouldnt devulge it. "Especially since you are on the list"

PD must really be working for you!  That is good news and keep up the great job.  Maybe others can comment to this, as hubby is not transplant material!

Great Job it sounds like!
lmunchkin
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« Last Edit: January 16, 2012, 08:59:56 AM by lmunchkin » Logged

11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
beachbum
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« Reply #3 on: January 16, 2012, 09:09:05 AM »

Howdy Beachbum!  I would not tell Drs anything, as long as you are monitoring frequently.  If BP gets too high, then take a pill.  But only after Dialysising.  If they say things are looking good, just tell them its because of their care!!! Of course, you will know why, but telling them may seem non-compliant, so I wouldnt devulge it. "Especially since you are on the list"

PD must really be working for you!  That is good news and keep up the great job.  Maybe others can comment to this, as hubby is not transplant material!

Great Job it sounds like!
lmunchkin
 :kickstart;

I forgot to mention that I am taking the new BP medication and it seems to be doing a better job of controlling it. I think it's called Labaetol (spell?)

PD is going ok. My numbers are coming down but still struggling to pull off fluid. The green bags sometimes pull a little off so I have to do at least one red a day. Last night was a good night. I pulled an extra 1100cc off!
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texasstyle
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« Reply #4 on: January 17, 2012, 05:04:37 PM »

You much feel so much better and I'm glad to hear that. I always say, you have to listen to YOUR body.
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caregiver to husband using in-center dialysis 4 years
billybags
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« Reply #5 on: January 19, 2012, 06:02:47 AM »

As every one says , you have to listen to your body. My husband has been taking satins for about three years and was full of aches and pains. Doctor says keep taking them. Spoke to neph, told him he was coming off them and that's what he did. He has lost the aches and pains, can walk better and his cholesterol is good. Doctors not in pressed, according to him every one should be on the miracle pill. I think you not.
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fearless
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« Reply #6 on: February 13, 2012, 04:56:43 PM »

 You'll have to gauge whether you think your doctor is the agreeable sort, but it's important for your doc/clinic/all medical personnel to know what medicines you're taking and how much.  That's the only way to know how to appropriately treat you in an emergency - or for your doctor to know how to adjust/discontinue your meds.

It sounds like your doc isn't examining your case very closely.  I think it was right of you to stop the medicine (personally).  But I do think you should tell him you did it so that he doesn't think that the reason your blood pressure is OK is because you're using that drug.

Also, on PD, the more salt you take in, the harder it is to pull off fluid and the higher concentration of dialysate you'll need.  Salt also will contribute to high blood pressure. Don't know if this is affecting you or not, it's just something to be aware of.

So happy to hear your swelling is down.  I had horrible elephant legs before I started D.  Sounds like you're like me: I've adjusted my own meds.  After a while my doc accepted that I was able to gauge how much or how often I needed them.
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