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What Is The Most 'weight' You've Gained In A Few Days Because Of Edema? How Do You Prevent It And If You Can't, How Do You Manage With It?
The first time I really had edema was almost a year ago when my daughter was born and I woke up to my entire face black and blue, swollen, I couldn't turn my head because my neck was so tense, and I was swollen in my legs 'til the point I couldn't walk so I decided that was when I was going to the hospital and the long journey to my PAH diagnosis, medication adaptations, etc... and now here we are!
I didn't struggle with it after that. Until the last three weeks or so, I am constantly… read more
@A myPHteam Member Yes, I did call and unfortunately it's always the same advice which most of the time I'm not willing to do because of the issues I am still working through so I just kind of grin and bear it unless I am starting to have other symptoms alongside the weight gain. There isn't much they can do I guess when it comes to this symptom except push IV drugs to make it temporarily go away.
15 lbs in 5 days, hard to handle as fluid pills don't always work :(
Hopefully you have gotten some better results since April. I have PAH and don't need the diuretics often. I'm thankful for that, as I know they are not good for us. We do our best.with this disease. Have a blessed week from Texas.
Do not apologize for venting; I understand the need all too well and came back on here tonight after a long time because I know I'm needing support from people who get it a little bit more than people who live without this condition. I am so very sorry that you can relate to my post; it sounds like we are in the same kind of boat - especially with the ER visits. We moved to a rural town to have help with our baby because I was quite literally dying a year ago... my PH clinic is three hours away on a GOOD day with the Toronto traffic, more like five because it's rush hour all the time. I haven't been up to ding that trek with or without the baby, the ER's around here will not touch me at all even though I've been told to go to them, and all I get is another day trying to do the best i can. Which I'm sure you are doing just that as well. Thank you for sharing some of your story with me, do you ever forget there's other people with this condition? Because I know I do!
Yes, and i take so many directucs to get and keep edema at bay, that then results in other issues. Dr. Indicates each time in CHF takes a toll on my heart. Constant fluid off , and I mean sime Drs do not believe me I can gain 10 lbs fluid in 48 hrs plus more. I hate going to ER as they do not have a clue other then iv lasix of which I also have bladder issues, praise the Lord for the person who invented purewick in hospitals but tgen I have to fight to get it. My pressures have climbed to 78 from 69 over last 6 months. Never smoked in life, my PH, from autoimmune diease, caused also by autoimmume liver, now kidneys being attacked. Please forguve me for venting, somtimes feels good too.
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