The Fluid Battle

The fluid battle goes on. Not everyone with PH has the battle. I have PAH which means I also have right heart failure. I have problems in my left side too as I have two mechanical heart valves. Your heart is a pump and mine is not working well right now. As a consequence I retain too much fluid. I have lowered my salt intake significantly, at times drastically. I take diuretics each day to help remove the fluids. Still, I can take on several pounds of fluid overnight. It is so frustrating at times. When I have fluid the PH medicine can't work. When the PH medicine can't work and my heart is working harder I get more fluid. A vicious cycle. Right now I am carrying at least five pounds of fluid. I am using peanut butter with no sodium, buy low salt everything I can and still have the problem. As a result, the past few days I have been SOB (no not a son of a b*tch but short of breath.) I have learned all kinds of these things from fellow Phers, aka PHriends. I love them. They know where I am coming from and understand what a bad day can be like.

This past week I was disappointed when an old friend was going to lunch with other friends. I used to be asked to join them but she doesn't anymore because she doesn't want me to feel bad that they are going if I'm not up to it. So instead I felt left out. She has another friend dealing with another lung issue, COPD, who stopped being her friend because she smokes and smells of smoke. I have told her that she cannot smoke in my presence. We usually meet at a diner or something so I don't have to smell the smoke. I would think seeing two other people on oxygen would be a huge incentive to stop smoking. People her age no less.

We have a new car. I am enjoying that. Last night we went to run errands, pick up a few groceries and I love the XM radio so much that I didn't want to get out to go in Home Depot. We had to pick up screen as the cat knocked out my screen door on the kitchen slider yesterday. He jumped, it fell on a chair and the old screen split. The cat seemed pleased at this. I would have thought it would have startled him but not at all. He's so adventurous. My husband, Rob has begun the job of replacing the screen. It's on our kitchen table and the cat is bolding announcing his presence as if to say "I'm here if you need help." Either that or "No screen can contain ME!" He is full of mischief and he's ten years old.

I go to Philly on Wednesday to see the PH specialist team. Wish me luck. They have to decide whether or not to change my medicine. I am kind of hoping not as it would mean adjusting to something else and they all have side effects for me. On Thursday I see my lung doctor to make sure that the pneumonia has completely gone. Last Friday I was running a low grade fever and they put me on another course of antibiotics. That could also make me feel tired and SOB. It's so hard to determine what is the cause. I'm a puzzle and the pieces don't always fit with ease.