Thursday, May 11, 2017

CF Awareness Month Day 11 - "P" Words

Ahhhh, the "P" words!  There really are so many with lung disease!  Let's see what I can come up with here...I'll start with the suggested words in the picture:

Pseudomonas:  One of the most common bacterias that grow in the lungs of CF patients and cause problems.  Personally, I grow about 4 different strains of this bad boy, 2 of which are mucoid strains and are tricky to treat.

Prolapse:  Thankfully, I've never experienced rectal prolapse.  I hear it's painful, though.  I think this can be caused when your enzymes don't work right (or you don't take them!) for a long time, and the stress all that undigested fat puts on your intestines and rectum can cause a prolapse.  I could be completely wrong about that though!

Pancreatitis:  Again, thankfully I've never had pancreatitis (that I know of!).  I do randomly get some pains in the side of my abdomen, but I don't think they've ever risen to the point where it could be pancreatitis causing them.  I believe that, like a prolapse, pancreatitis is very painful.  Pancreatitis is not super unusual in CF patients due to the fact that most CF mutations put a lot of strain on our pancreas anyway.

*I'm not sure what pegs and poopas are, so I'll be skipping those, haha.  I think this "31 day challenge" must have originated in an English-speaking country way cooler than the U.S. 😂  I'm guessing "pegs" are maybe a reference to feeding tubes, but I'm utterly at a loss for "poopas"!*

Ports and PICCs:  I'm going to group these together because they're kind of different versions of the same thing.  A PICC line is a "peripherally inserted central catheter", usually put in a CF patient's arm when they are needing a course of IV antibiotics.  A PICC line is a kind of IV, but it lasts much longer than a peripheral IV.  PICCs can last months and months, whereas peripheral IVs usually only last a few days before they need to be changed.  PICCs are advantageous because they allow the CF patient to do a full course of IVs (which usually lasts at least 10 days, but often for several weeks) without constantly having to get a new IV put in.  PICCs are also great because you can easily draw blood from them for labs, and they're easier to use and maintain at home than a normal IV.  PICCs are usually inserted on the inside of a patient's upper arm, and the catheter runs through a large vein and ends just above the heart.  I've had many PICCS in my adult life - in recent years, I usually keep them in for at least 6 - 8 weeks.  They're a bit annoying to maintain, but for the most part don't really get in the way.

Eventually, a patient's veins get worn out and scarred from too many PICC lines, and a CF patient might need to have a Port put in.  Another reason a CF patient might go ahead and get a port even if their veins aren't worn out is if they are on IVs often (several times a year) and don't want to go through the hassle of getting a PICC line put in each time.  A port is a more permanent IV access.  A catheter is surgically inserted underneath the skin with a "button" that sticks out a bit under the skin where the catheter can be accessed with a port needle.  I don't have a port yet, but I know eventually I will need one.  The veins in my little arms are starting to get worn out and PICCs are getting harder to place these days.

Physio:  Again, a term I'm not completely familiar with, but I think this is talking about either chest percussion therapy (CPT - such as pounding on a patient's chest and back to bring up mucus, or using a therapy Vest which inflates and shakes the mucus loose in your chest), or it's talking about exercise - both of which are very important!  Because CF patients have thick mucus in our lungs all the time, it's important to take daily steps to clear that gunk out so it doesn't build up and cause infections.  Personally, I use a therapy Vest twice a day.  I also should be exercising to get that junk up, but haven't been very good about that for the last few months.  Hopefully that's about to change though!

Pancreatic Enzymes:  Many CF patients have to take supplemental pancreatic enzymes when we eat to help us absorb fat and fat-soluble vitamins and nutrients because the mucus in our body plugs up our pancreas, resulting in a drastically reduced production of pancreatic enzymes needed to break down and digest that fat.  Most of us, myself included, take pancreatic enzymes every time we eat or drink something with fat.  Otherwise we get a really bad tummyache!

My own "P" Words

Pneumothorax:  A pneumothorax is when air somehow leaks from the lungs and get trapped in the chest cavity between the lung and the chest wall, creating pressure on the lung and causing it to collapse, either in part or completely.  I experienced a pneumothorax in November 2016 - it caused a great deal of pain in my shoulder region that I couldn't explain, plus I could notice air bubbles moving around in my ribcage whenever I bent over (!!!).  Correction for a pneumothorax depends on how severe the collapse is - if it is small, bed rest and supplemental oxygen can fix it after a few days.  More extreme collapses require a chest tube to drain the trapped air from the cavity, and those tubes have a large range in sizes, again depending on how large the collapse is.  If chest tubes and rest do not fix the collapse, a surgery called pleurodesis (another "p" word!) may be required, which is where a thoracic surgeon goes in and adheres the the lung to the chest wall to keep it inflated, usually using some kind of talc powder.

Pleurisy:  Pleurisy is another lovely lung/chest wall issue that pops up on occasion with CF.  Basically, it's where the lining of the lung becomes inflamed for some reason, resulting in pain when you breathe and your lung rubs against the inflamed chest wall.  Since breathing is kinda, you know, essential, there's not a whole lot you can do about it.  I've never had an official diagnosis of pleurisy, but now that I know what it is I'm pretty sure I've had at least two or three bouts of it before.  Luckily for me it usually only lasts for a day or two before it clears up on its own, but I know that some people have to live with it for several weeks sometimes.

Pan-resistant Bacteria:  This is the especially yucky kind of bacteria that are not susceptible to antibiotics anymore, which makes treatment for exacerbations much harder and longer.  This kind of bacteria can be picked up by CF patients from various sources, but usually pan-resistance develops over time as antibiotics are used often to treat infections and the bacteria gets "smart" and develops a resistance to antibiotics.

Prednisone:  A lovely little corticosteroid that CF patients either love or hate with a passion!  Personally, I love going on prednisone.  It gives me a crazy amount of energy and I breathe way better, all of which greatly uplifts my mood.  It can have some not-so-great side-effects on some people, too, including mood swings and something called "moon face", which is basically where your face retains a lot of water.  It can also raise your blood sugars while you're on it and lower your bone density if you're on it for a long period of time.  I used to get bad mood swings when I went on it, but fortunately I haven't had many of the bad side-effects for a few years now, so I just get excited about the energy and mood boost when the doctor suggests I do a course.

Pulmonologists:  A lung doctor!  Most CF patients will see many MANY of these doctors throughout our lives! :)  CF centers have pulmonologists who specialize in cystic fibrosis treatment, and I am so very grateful to each and every one of them who chooses to pursue this area of medicine!

PFTs:  PFTs stand for "pulmonary function tests."  Basically, it is a way to measure how well a patient's lungs are working, and a good gauge for when it's time to step up the treatment regimen.

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