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.
The gut (belly/bowel/intestines) are greatly affected by CF. There are a lot of issues that can come up. Like I have said before, not all CFers have the same symptoms and problems, nor do they have them at the same rate/severity. I am going to add some pictures to help describe all of these gut related this. The pictures will help describe some of the different aspects of these areas that are affected. I have included information about feeding tubes because maintaining weight is something many pancreatic insufficient CFers deal with. We have to keep the weight on so that we can fight infections. Continue reading
The lungs are a delicate thing. They are sacks of air that keep you alive. It is an understatement to say that breathing with crappy lungs is hard work. There are many things besides just the standard crappy CF lungs that can happen in someone with CF. A short list is the following; muscle/skeletal pain from all the coughing, collapsed lung (pneumothorax), pneumonia, pleurisy and lung bleeds (hemoptysis).
One thing people with CF are good at is hoarding bugs in our lungs. If you have seen the Mucinex monster commercials, our bugs are kind of like that but on steroids! They like to hang out in there and not budge. The problem is, that once the bugs are in there, it is hard to get them out. The bugs thrive in a wet environment which is defiantly our lungs. All of the thick sticky mucus in there holds onto the bugs and doesn’t let them go. Therefore we have to take antibiotics to help kill the bugs, whether it is pills, IV or inhaled. It can be a combo of those 3 methods also. Reoccurring infections lead to scaring in the lungs which leads to lung damage. Once again CF is progressive so it will get worse over time. I like to describe my lung infections like this, “it’s like mono (the kissing disease), once you have it, it’s always there, it’s just whether it is active or not.” So yes my lungs will most likely always have these bugs in them but it is whether or not it is making me show signs and symptoms of an active exacerbation (infection). I have not had a clear sputum culture in too many years to count. It was when I was a kid. Don’t worry you “normal people” don’t get bugs like us. We are special. Continue reading
There is no cure for CF. There has been leaps and bounds in research for medicines to help treat CF. They have made headway in research for a cure but nothing solid. The saying, “the cure is right around the corner!” has been around for many many years. My parents heard it when I was diagnosed 34 years ago and “they” (CFF, docs, etc.) are still saying it today. With that said, we are closer to a cure than we were 34 years ago. I don’t think I will see a cure in my lifetime but who knows, someone may surprise me with that. If I can live my life as an example and do my part for research then that is all that matters for the generations behind me. They are doing research with stem cells in hopes of helping correct the defective CF gene, which is promising. Continue reading
Airway clearance is a big part of life with CF. There are many different ways to do airway clearance. Pictured are a few handheld devices. All of these you either inhaled into to expand your lungs or you breathe into to help vibrate the lungs, which loosens up mucus and makes you cough. There is also the vest, which, I use. There are others not pictured or mentioned. The goal of airway clearance is to loosen up all the mucus in the lungs so that you can cough it out. It only has one way out and we have to work for it. I joke that I wish I had a spit release valve, like on a trumpet, so that I could open it and blow it all out. It is a lot of work coughing out all the junk. We don’t have control over when we cough. Well I should say that doesn’t mean that we sure don’t try to control it. My husband likes to park in the “back 40” in parking lots. When he pulls in the spot he says, “AIRWAY CLEARANCE!” (in a sweet singing voice) Exercise is also another great form of airway clearance.
Some CFers dislike the VEST and prefer the old standard of clapping (PD&C=postural drainage and clapping). That is where you lay down or sit up (depends on what you prefer) and someone claps with cupped hands on your back and sides to help loosen the stuff up so you can cough it out. When I was growing up we called it “beating,” heck we still do. Many times I would hear my mom says, “Shannon, come here I need to beat you.” I have been known to ask my husband to beat me. The kids like to joke that “dad beats Shannon and she takes drugs.” There is also a percussor (pictured below) that does the same thing as clapping through vibration. It vibrates the lungs to loosen the junk so make it easier to cough out.