CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

recent posts

  • Most Common Questions I’m Asked

    I get a lot of the same questions about CF which is no big deal but I thought I would type some of the most common questions I’m asked here and answer them in case you were an inquiring mind and just haven’t asked yet. haha

    How long do the IVs take to start working? Unfortunately with the stage of my CF (end stage if you want to put a label on it, more on that later) the IVs are basically “band-aiding” me until the next lung exacerbation. There is not going an overnight change in the sense that I’ll wake feeling all better. With the damage my lungs already have there’s not going to be big changes. IVs provide more of a relief in some symptoms more than taking them away if that makes sense.

    How are you feeling? That’s a loaded question. I’m so used to not feeling “good,” everyone’s version of “good” is different depending on what they are used to dealing with day to day. When I feel worse, more consistently, I know it’s time to do IVs with/without prednisone. Mornings are rough so if you ask me how I’m feeling in the morning right after getting up I’ll most likely tell you I feel like hot doo doo. After laying down all night and having all the junk in my lungs laying there stuck to my lung wall is no fun. I have to get it moving (aka coughing like crazy). As the day goes on, do breathing treatments and I’m up moving more it gets easier and I feel less like hot doo doo. Many times my response to “how are you feeling” is “the same,” “decent” or “hanging in there.” I don’t like saying “good” because everyone’s version of “good” is different and many people take “good” as “all better.” I can be feeling better per se but once again I don’t like saying “better” too often because many take that as I’m “all better.” Unfortunately I will never be “all better” because CF is a daily struggle. Yes, I can feel better than I was when I was sick/sickest but that means I’m just not as bad as I was. I guess I don’t want to give people false hope if I say “I’m better” because I live in my reality which is with not great days and days that aren’t as bad. I just want don’t want anyone to be surprised when I “get sick” or end up listed for transplant. If I tell you I’m feeling good and the next day I end up on IVs or in the hospital you might be discouraged/disappointed. It’s just how life with CF goes.

    Are you worried with all your health stuff? No, I’m not worried. I call all of these things that pop up in my CF journey speed bumps. You can’t really except to go through life with a chronic illness without having something go “wrong.” I learned early on in life that is what life with CF looks like. I can make the best of a crappy situation or I can make myself miserable by dwelling on all the crap. I choose to make the best of it. I want to live my life with no regrets and make all the memories I can. There’s no reason to worry about the things you have no control over. Worrying doesn’t change the outcome of the situation. If I’m not worried, there’s no reason to worry. Haha

    How do you do it all? I just do it because I have no other choice. No, I don’t like all the crap I have to deal with but I’m going to keep living every day to the fullest that I’m given. Giving up has never been in my vocabulary so I’m not about to start now.

    Is it scary? It can very scary. I don’t get medical anxiety for the most part. I educate myself on all the things I go through so that I know what to expect, good and bad. It’s the unknown that is scary. I’m not a big fan of going through procedures that I haven’t done before just because I don’t know what to expect. That is more of my type A personality thing and wanting to know all the things and to have everything in order. Hence the reason I do lots of research and ask for first hand experiences so I can be more informed. With that said, transplant is the big one. I’ve been along side many friends that have gone through a lung transplant and I know a lot of the ups and downs but everyone’s transplant journey is very different. It is not going to be an easy journey at all and it will definitely be scary but that’s doesn’t mean I don’t want to go forward with transplant. It’s just part of it.

    Why can’t you just get a transplant now? You have to be “sick enough” to get a transplant and “healthy enough” to endure the surgery and recovery. It plays into survival rates and all that. Transplant is not a fix all or a cure all by any means. You are trading CF lung issues for transplanted lung issues like rejection. The transplanted lungs will NOT have CF DNA and will not “get/develop” CF. The rest of my body will still have CF and all the issues (ie digestive, sinuses, osteoporosis, arthritis, etc) that go with it. Transplant is a big deal and takes a lot of work. Transplant has come a long way.

    What’s the magic lung function number for you to get a lung transplant? There isn’t a magic number. Many things come into consideration when qualifying for a transplant. Most people think because I have 30% lung function that I should be getting new lungs now. That’s not how it works. Some of the factors taken into consideration to qualify for a lung transplant are lung function, resistant bacteria, limited treatment options like running out of antibiotics to use, BMI (not too skinny or too heavy), mental health (able to handle the recovery process) and others but I’m drawing a blank. So there is no special number I have to get to in order to be listed. There are many people with less lung function than me still living life on their God given lungs. Everyone is different.

    That’s a good start. If you have a question for me please ask away. As you know I’m an open book.

    Until next time…

  • Hello IVs…It’s not been long enough

    I received an unwanted wedding anniversary gift today, such is life with CF. I’ll back up to fill you in.

    I started the lisinopril (blood pressure med) at my last CF clinic appointment 2 weeks ago. I followed up with my primary care doctor regarding my elevated BP issues last Wednesday. She upped my dose of lisinopril from 10mg to 20mg. A dry hacky cough is a very common side effect of lisinopril and of course I got that side effect. It increased when we increased my dose. This brings me to Sunday night. I was coughing all night and tried sleeping sitting up on the couch to see if it would help me stop coughing as much. No such luck.

    Monday I slept off and on all day because I was so sore and worn out from coughing. I had also pulled some chest muscles from coughing so hard. I was also running slight fevers off and on that would break with Tylenol. I didn’t take the lisinopril Monday through today (Wednesday). My primary doctor was of course ok with me not continuing it. She changed my BP med to Losartan 25mg. I’ll be starting that tomorrow morning.

    Now to the reason home IVs are back in the picture. I had a sick appointment with one of the nurse practitioners in the CF clinic today. My thoughts are that all the coughing I was doing because of the lisinopril aggravated my CF bugs (pseudomonas) that live in my lungs all the time. They were like, “hey, you didn’t forget about us did you!?”

    My lung functions were .80L/29%. Not to shabby considering the lung pain I have at the moment. She initially suggested oral antibiotics and a prednisone taper. I had to let her know oral antibiotics don’t really work for me anymore. She’s not one of the NPs that I usually see, so she didn’t know how complicated my body is. haha. She agreed that I should start IVs at home and do a prednisone taper. She sent a message to my doctor to verify this was the course of action he would go with.

    She suggested IV cefepime (2g) because my last sputum culture showed my pseudomonas was sensitive to it. It will be every 8 hours via IV push for 14 days. IV push is fancy wording for it’s in a 30cc syringe and I’ll push it in my port over about 10 minutes. I often do IV zosyn but your bugs can build up a resistance to different antibiotics if they are used a lot. We are trying to not let that happen since we are so limited in my drug sensitives and my long list of allergies.

    That’s it for now. I’ll update more later on the MRI I had of my brain that was to make sure we weren’t missing anything regarding my headaches, which the headaches have been better by the way. I just wanted to get this update posted so you were up to date.

    Until next time…