Recent content by dmac

Amber, this is a lovely idea. It is so good to remember our gratitude. I try to give thanks each day for the wonderful things that have happened, the people I've meet and interacted with and the beautiful things I have seen. Right now it is somewhat more difficult as my mother passed away a...

My sodium number is always down and I have to add salt to everything I can. Unfortunately, my cardiologist would like me to stop using so much salt as I have HIGH blood pressure and have to take a medication for it. So there goes the "low blood pressure" idea for all cf patients. I have CF.

Just wanted to join in. I celebrated my 65th birthday a few days ago. I was diagnosed at age 40 through the gene test. Sick all my life with respiratory issues and had hemoptysis often all through life. Doctors would give different diagnoses. Sweat tests were done twice but both came back...

Hi, Some do come fragrance free but I've found that name brand versions of FF products still have an odor to them. Someone mentioned 7th generation. I used to use that but have since gone to Grab Green products found online. They have all sorts of things available. Also, Smarty Method brand...

Yes, I have experienced that in the past. I, too, switched to all fragrance-free products, green ones when possible. It helps a great deal. Even if I wasn't the one doing the cleaning but someone else in the house was, the smells used to make me cough horribly to the point of bleeding. Now I...

So sorry you are going through so much pain. One member mentioned pleurisy and that pain is horrible. There are so many things it could be. Another mentioned a collapsed lung, that sounds so serious. Over time (I'm in my 60's now) I have broken at least 4 ribs on different occasions from...

Do you take Mephyton? It's a prescription strength vitamin K. My dose is 5mg every day. On days when I cough up blood I can take a second pill if I need it. I've been on this for years now. I used to cough up blood a lot. When my doctor realized the frequency and amount of hemoptysis was...

I meant to add to my post that I am now 64 yrs old. Having the diagnosis helped a great deal and being treated by real CF doctors is the way to go. Thanks. Donna

When I was first tested in my thirties I didn't have hardly any sweat but the pulmonologist did it anyway and said the tests didn't show anything, whatever that meant. I switched to another pulmonologist when he began talking about exploratory surgery in my lungs. Next time I had a sweat test...

I sometimes get those dry hacking coughs and it is hard to catch a breath sometimes. I, too, find that cold, fizzy, club soda helps. Also I take Tylenol #3 as it helps relax my chest and helps suppress the coughing. However, I've been on Tylenol #3 so many years now that it takes more as my...

Sorry to hear things have gotten you down. One of the other members mentioned exercise -- very important. Keep trying when you can. If its hard, then do walks. Get out of the house and walk. Another avenue, if you cannot get a job because you keep getting ill, then perhaps look into one of...

Have they checked your potassium and magnesium levels? Last time I was on the IV antibiotics I started feeling lightheaded, nauseous, and so forth. At the ER they checked both, my potassium level was critically low - I ended up in the hospital and it took them 4 days and many bags of potassium...

When I have had to deal with a persistent, unproductive cough, my CF doctor has told me I'm experiencing something similar to an asthmatic cough and that I am probably inflamed. I am highly allergic to prednisone so can't take that. My regimen for dealing with that cough is a supplement...

Both my cf doctor and primary doc test my electrolytes a couple times a year to make sure sodium level doesn't fall below normal -- it's almost always at the bottom number of normal or just below. I salt my food but don't go crazy. It's a balancing act for me because my cardiologist doesn't...

I agree with others to get to a CF center and get the gene test. I had lung troubles my whole life, hemoptysis, coughing up green gunk all the time, shortness of breath etc. I had a sweat test that came out negative when younger then later on another one, but on that day I had a temp of 102...