Well! It's that time of year! Thanksgiving is now less than a week away, and the black Friday ads are popping up everywhere. Turkey Day is truly one of my favorite holidays (and I would imagine many other cysters and fibros might agree with me). Any holiday which encourages high fat, high calorie, super-filling meals, which I don't have to prepare, is perfection! I can't wait to sit down to a nice huge plate of turkey smothered in gravy, smooth whipped potatoes bathed in butter and gravy, creamy green bean casserole topped with crunchy fried onions, sweet potato casserole, corn casserole, cranberries, Jello fluff, and pumpkin pie. Anybody else hungry yet?
This year we will be celebrating with my parents and sister the day before Thanksgiving, and then will celebrate with David's family on Thanksgiving day. I'm planning on making something for each get together, though I have no idea what to bring. I'm just glad we will all be together as a family and able to enjoy a filling and delicious meal!
Until then, I will continue to worry about my lungs a bit. Last week I had blood in my mucus which quit after laying off of the Cayston and hypertonic saline for a day or two. Yesterday, I coughed up more mucus with blood in it. I really really hate seeing that. I'm grateful that it's not pure blood, but it's still scary, that's for sure. Today I've been extremely exhausted and my lungs are sore so I'm hoping it's not a sign of a bad lung infection coming on. I have been coughing way more than normal the past few days so that could easily be the reason for both of those feelings.
I did get in touch with my CF nurse practitioner, Penny. She was the one who suggested laying off of the hypertonic and Cayston to begin with which did help. I found out I have 3 different strains of MRSA in my lungs and I'm allergic to one of the best drugs to fight off MRSA. This means if I have to do a PICC line it will be massive..huge...last-resort kind of antibiotics. That might be why coughing up bloody sputum scares me so much. So, hopefully as the week continues my lungs will heal up and start feeling better!!
Today I am thankful for clean drinking water. I know this seems odd but I really think that too many of us take this for granted. I was putting a new filter into my PUR water pitcher and I realized that we are so blessed to have an abundance of clean, delicious, water. There is nothing that tastes better than ice-cold water when you're thirsty (at least in my opinion).
Sorry you are feeling so lousy! I am actually feeling GREAT, which is unusual for me this time of year, but I am SO glad because I felt lousy for so much of the year! My last round of steroids+levaquin+cayston+antifungal seems to have totally done the trick for me. What antibiotics would they put you on if you did IVs? I'm allergic to almost everything, but they usually will de-sensitize me and use one of them anyway (since there are so few options left).
ReplyDeleteI'm so glad you're feeling well, Cindy. You deserve it after such a rough time this year. I'm glad that the drugs really did the trick for you. I'm not 100% sure of everything I get put on when I get IVs. I know (forgive my spelling in advance) that last time I was on Tobi, vancomyacin, and another drug. If I went on again it would be to treat the MRSA which means I would also have to had lenazolid (I think?) and they really want to save that one if they can. Gotta love being resistant/allergic to others.
ReplyDeleteWhat was the desensitizing process like?
ReplyDeleteBasically, over teh course of half a day they administered gradually increasing doses of the med I was allergic to - starting with a teeny amount, and then doubling that, doubling again, etc. It was long and boring but it did get me to tolerate the medication okay. Since the meds I am allergic to are also the most effective for me, it's worth it. I definitely recommend asking your doctor if they can desensitize you to the one you're allergic to if you need it.
ReplyDeleteI'm praying that you'll be able to kick it soon and not need IVs. I hate IVs around the holiday season... I react REALLY strongly to them and they wipe me out for weeks afterwards! This is the first year in 3 that I have NOT had IVs right before the holidays and I am LOVING it. What do you think the chance you'll need them is?
Sending healing thoughts your way! I really hope you feel better soon and that you can avoid a PICC. Rest as much as you can and enjoy the extra Thanksgiving calories!!!
ReplyDeleteThank you so much Inhaling Hope. I have been eagerly waiting to see a new blog and hear how you're feeling. I'm thinking of you all the time! I hope you have a fantastic Thanksgiving week!
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