We know that living in Tennessee has taken a toll on my health in the area of lung function. I have dropped 24% in the 22 months living here. I have asthma along with CF so that is a double whammy. I did skin allergy testing about a year ago and it showed that I wasn’t allergic to anything. I was hoping that it would show something so I could have some answers as to why I was having such a hard time. I was bummed. I wanted answers. Continue reading
I am guilty of watching someone park in a handicapped parking spot and judging whether or not they should be parking there. They get out and they look completely fine. Hello Shannon, you can’t see all disabilities, CF included! Pretty much the only sign that there is a disability in someone with CF is if they wears oxygen. I have been thinking about when is the right time to apply for/get a handicapped placard as my lung function has declined 24% since moving to TN 22 months ago. It has been a battle in my mind of accepting the fact that my lungs are as sucky as they are and being ready for even more stares from people. I know there will be people who make comments that I am “perfectly healthy” or even leave nasty notes on my car saying that I should be ashamed that I am taking a parking spot from someone who actually needs it. You may be saying that won’t happen. Well it does, has and will. It has happened to friends of mine and I’m sure it will happen to me at some point. I just have to be prepared mentally for it. Continue reading
It has been a busy few weeks. Heck, it’s been a busy few months.
I was on IVs, then in the hospital for kidney failure then a few weeks of recovery and energy storing for my trip to Florida this past weekend. My sister and I went to Miramar Beach in Destin, FL this weekend. We arrived Friday morning and left Monday evening. We packed in a lot of time on the beach laying in the sand, enjoying the water and soaking up the sun. We also visited some of the “famous” places there like McGuire’s and AJ’s. We even got tattoos! My sister’s says “With Every Breath” and mine says “Every Breath Counts.” They are on our ribs under the bra line. To seal the weekend we went for a helicopter tour to see some sharks and dolphins. It was beyond beautiful! I could have stayed up there all day. Continue reading
CFRLD/CFLD or CF related liver disease is yet another common thing in CF. Mild liver involvement with abnormal liver blood tests or fat in the liver is common. In some patients, the liver problems caused by CF are much more important than the lung disease. Advanced liver disease in individuals with CF is called CF liver disease (CFLD). Severe scarring of the liver, called cirrhosis, can occur in CFLD. Many CF patients with liver involvement do not have any symptoms. In patients with advanced CFLD, patients may have a large liver and spleen. Problems with weight gain can occur. As the scarring in the liver becomes more severe, the pressure in the vein leading to the liver (the portal vein) rises and complications of portal hypertension can occur. These can include a large spleen, fluid accumulation in the abdomen (ascites) and bleeding from dilated veins (varices) in the esophagus or stomach. Rarely jaundice and bleeding problems can occur. Basically because of the thick sticky mucus it makes it hard for all things to flow and work correctly in our bodies. They can do a abdominal CT scan to see if there is any narrowing of the ducts and other areas affected. Continue reading
The last thing I will talk about is infertility and all that goes along with that. Unfortunately, men with CF get the raw end of the deal. Upwards of 97% of men with CF are infertile. That’s not to say that through the magic of medicine that they can’t reproduce. It just take a lot more time, effort and money to do so. Once again the dang thick sticky mucus puts a stop to things in our bodies. There is mucus throughout your body which is to include the cervix of women. With that said, the thick mucus doesn’t allow the sperm to get where it needs to go to fertilize the egg. The egg itself might have trouble traveling down the fallopian tube also. So needless to say it could take a real miracle of God for some CF women to get pregnant. Continue reading
CFRD or CF related diabetes is also common in people with CF. Due to the pancreas not functioning properly, it throws many things off whack, to include blood sugars. People with CF take a lot of steroids like prednisone to help with inflammation in the lungs. Steroids throw blood sugars all out of sorts, usually resulting in really high blood glucose numbers. With the diet needs in people with CF the amount of monitoring of blood sugars is high. Our bodies pull so much from us to fight infection and just to breathe that we can bottom out and have really low numbers and also go really high in the matter of hours. Continue reading
Nasal polyps are very common in CF. I, myself, have had a number of sinus surgeries to remove polyps. I have lost count how many surgeries. During the surgery they go up through your nose into the sinuses and remove all the polyps and make bigger openings if needed. It is not a fun surgery by any means.
There have been cases where an ENT (Ear, Nose and Throat) doctor has noticed polyps and suggested that the person be tested for CF because polyps are so profound in people with CF. Then they tested positive for CF. It is interesting how different signs/symptoms are prominent in some and nearly undetectable in others. The reason for that is that CF is very unpredictable. Continue reading
People with CF are very prone to having osteoporosis, or any degree of osteopenia. Osteopenia is a condition where bone mineral density is lower than normal. Osteoporosis is where there is a loss of bone mass and density. This means that you are more prone to fractures. CFers are prone to these bone conditions because of the absorption issues with digestion. We don’t get all of the nutrients from the foods we eat because they can’t be digested correctly. Most all CFers should take a multi-vitamin, whether it is the vitamins specifically for CF or an over the counter one. Extra vitamin D and calcium should also be taken to help keep bone health strong. Continue reading
CF is not only a disease that affects the physical body but also affects your mental/emotional state. Many people with CF have depression and/or anxiety or other mental health issues. It is a hard fight mentally as well. I have not been shy with my depression diagnosis. It hasn’t always been peaches and cream. It is a fight. I have clinical depression. There others that have situational depression meaning that depression takes over when they get sick with a CF exacerbation or other CF related health situation. There is no shame in having Depression but there is a lot of stigma that comes with it.