I am so lucky.
Lucky, lucky, lucky. I’m not sure how I’ve lived this long. Better people haven’t.
My clinic appointment went pretty well. It’s funny now my blood pressure goes up during the visit, especially if they take it before I do my PFTs, which make me nervous as I can’t tell which way they’re going to go. They end in happiness or dejection. No in-between for me.
When I was in the hospital for my two embolizations and 20 straight days of partying, my PFTs when down to level unseen since another doctor ruled the clinic years ago. In the span of my hospital stay, I lost over 20% of my lung function. The good news is – and why I am lucky – most of my lung function returned. I worked my ass off trying to get it back over the past weeks, even succumbing to twice a day pulmozyme, a drug has may cause me to bleed and one which my doctor and I discussed for 10 minutes. (Does twice a day make a difference? He says it’s only a 1 to 2% gain twice a day and wants me to take it once a day.) But I was desperate to use any tool in the tool box to get my numbers up. I’ve been doing my treatments three times a day, as always, with more vest time. Flutter, of course. And I used the big gun of Cayston the minute I got out of the hospital.
Lucky me.
I also had a great visit because the doctor is top notch – outstanding from a medical standpoint – and human, caring and understanding. It wasn’t a busy day and he listened to me vent about the last hospital stay and we came up with ways that future stays for all CFers can be improved – measured cups for hemoptysis volumes to reduce guessing; faster decisions to embolize. I’ve never met a doctor with a better understanding of what it’s like to stay in the hospital. He’s awesome. Bromance in the air? Kidding.
I’ve avoided a oral glucose test for the past three years. I’ve never had the time to go to the lab for two hours, or I haven’t wanted to take the time to do it. They’ve written me a dozen Rx’s for the test and it’s kind of a joke when I ask them for a new one each time. Tired of that game, they made me do the test at clinic and skip my morning McGriddle, which made me McMad. Not sure how I did, but I know I’ll find out soon. Scary waiting for results for that test, which is why I’ve avoided it.
I hate questionnaires – especially CF-related questionnaires. I’m at the point in my life that if I don’t like a question, I don’t answer it. When they asked me about sexual intercourse and my family history, I said “next, please.” Let’s concentrate on the questions that have some chance of making me well, people. I don’t give a sh** about zoo experiment statistics that you discuss over lunch and have no bearing on my health. Some of what I go through is none of your business. And the less I talk about certain members of my family, the happier I am.
The social worker visit? Hi. Nothing to say. Bye. Don’t take it personally. (They are my dark thoughts. I don’t need to share them with the world. Does a blog count?)
Here’s a mini-story about irony. The clinic visit, which was my “annual” visit even though feel like I live there, went fast. Usually they go slow and I’m there three hours. I could have been out in 90 minutes if not for the glucose test. ARGH. And I promised to complete a six-minute walking test for a study they were doing, which also included a questionnaire. And I completed that questionnaire while the nurse was asking me questions from another questionnaire. Two birds, baby. I’m the zen master of multitasking questions. Ask away. I won’t answer, but you can ask.
I completed the six-minute walking test, back and forth in the waiting area. 9 complete laps and some extra feet for good measure. A month ago in the hospital my results were not good and I “desatted.” Not this time because I am full of luck to the point it’s falling out of my pants. And I’ll feel that way until the next time I cough up blood on a Saturday afternoon or have to be admitted. But until then, it’s all gravy, baby. Gravy.
The Unknown Cystic 
You feel like sharing some of that luck 😉 I’m happy things are going well for you. You deserve a problem free 100,000 miles to soak in the warm so cal sun that we’ve all been blessed with.
It’s fleeting. I’ll probably cough up blood tomorrow for tempting fate and talking about a few good days. That’s what happened the last time I felt good. I never learn.
Think happy thoughts – they release endorphins. But don’t you know all of this bad luck… it’s going to be canceled out when we win the lottery one day. (I wish)
I spoke to soon. Friday, I had SOB most of the day. I hate CF.
😦 (((hugs)))
I am totally that way with blood pressure, but they have a specific order for me, being the first appointment every time: check-in, weight, CF solitary confinement, lab room. I always have my laptop bag, so I’m hoofing it with luggage and the nurses do nothing to lower my pressure b/c they act like it’s my first time there. Hello? I expect special treatment after you stuck a tube up my butt to clear a clog. I’m sorry, but we’re at a different level of “Hi, how are you?” than 99.999999999% of the country.
Glad your bromance is doing well.
I do Pulmozyme 2x/day and “have” since 7th grade.
I feel the EXACT same way about social workers. Do you really think this ring on my “I’m taken for life” finger means nothing in the way of support network? I have nothing to say to you or ask you because you know nothing about what it is to be a CFer if you stop in once per year and it’s a different person EVERY time. EVERY. No relationship, no talky. Stick a tube up my butt, and then maybe you can hear something about me asking about the cheapest way to adopt is.
Okay, so what is your FEV1, Mr. McMad?
Jesse,
Are there any studies that show Pulmozyme twice a day yield greater results?
UC
Oh man! First Browns bashing and now Social Work bashing!!! I have to admit that even though I am an Oncology Social Worker, I refuse to see the CF Social Worker when I’m in. SO glad to hear some good news. I’m betting you will keep riding this wave through the holidays and beyond 🙂
I’m not bashing social workers. I have a soft spot in my heart for them, especially one I know who lives in Ohio and roots for the lowly Browns.
Thanks for sharing the news about your clinic visit. Always nice to hear how it goes at other clinics.
I also have bp issues at CF clinic. Why do they check your bp while you’re staring at the PFT machine?!? It evokes the same anxiousness from me. At my old childhood clinic, PFTs were down the hall in another room a good ways away from CF clinic, so you were only there for two purposes: to blow into the elephant trunk hose connected to the magical black box and to get your sticker.
As for social workers… I’ve spent most of my life feeling annoyed by the questions, feeling they were irrelevant and unnecessary. And then I moved to a clinic that didn’t have a full time social worker during that critical phase of life when I was embarking on my life as an independent adult. There were many issues that the old clinic’s social worker would’ve had an instant answer to or advice about (i.e. understanding/navigating insurance, trying to get an upgrade to my ancient vest approved, dealing with CF when entering the workforce, etc.). I had to figure out all these things on my own with a teeny bit of advice from my CF clinic’s nurse. (Vest upgrade got denied and paid out of pocket, but otherwise I skated through unscathed.) As annoying as the questions about your feelings are, I think there’s a necessary role of social workers in CF clinics.
And a final comment on questionnaires. My childhood clinic had a standard form to fill out when you arrived at clinic about your recent symptoms. It was mortifying as a preteen to have your mom ask you outloud while filling out the form for you how many times you go #2 a day and how you’d describe it. I learned quickly that the correct answer was always “2” and “formed” regardless of whether it was true in order to avoid discussing it with the doctor (and whichever herd of residents and/or med students he brings with him).
Glad you are doing better than when you were in the hospital. Looks like your hard work is paying off. Wishing you continuing, bleed-free improvement of your lung function!
WordPress.com needs a “Like” button. “2 and formed,” so true!!
Question for you. MAL asked me if there was a way to subscribe to all comments on a WP blog. Do you subscribe to all the comments on my blog? Or do you have to subscribe to comments when you enter a comment?
I’m sure there is a necessary role for social workers at the CF clinic. I really like the regular one at my clinic. She’s super nice. I’m positive she helps a great number of the patients. So I agree 100% with you. It’s wasn’t my intention to say they’re not a good addition to clinic. If anyone is in the wrong, it’s me, the crazy person writing the blog.
Yes, we have the same pre-visit check list, most of which I just cross out – do you smoke? Are you pregnant? But I do fill in the relevant information.
Thanks for the good wishes. I appreciate it very much.
so happy to hear the great news!
Thanks. You and I both know it can always go the other way.
I’m really pleased that your lung function has returned to it’s previous level, it seem’s that this week has been a good clinic week for you and Robyn, I just hope that it last’s until the 17th when Lauren goes. Enjoy the California Sun while we freeze our brass monkeys off in the UK. 🙂
Do Brits keep brass monkeys in their houses just so they can say the “freezing the balls off a brass monkey” line every winter?
Oh, brass monkeys are everywhere now. Can’t get rid of the things.
I am happier for Robyn. Glad you posted the info. Crossing my toes and eyes for Lauren.
Brass monkeys? WTH does that mean? Are you using foul British terms on my blog? If you are, I’m damn happy you decided to. You just have to let me know what they mean.
I’m surprised you haven’t heard the phrase before? It’s cold enough to freeze the balls of a Brass Monkey! It’s an old one going back to the 19th century. My Grandad was a true cockney and used to use rhyming slang quite a bit so I picked up a few saying’s over the years!
I have never heard that phrase. I did guess the correct part of the body it referred to.
Oh, I’m so thrilled for the increased PFTs!! What a psychological boost. This is the most unpredictable disease. I understand your cautious optimism. Hope the glucose levels will be OK. I absolutely hate that test! Makes me sick for weeks…
MAL, Thank. PFTs not where I want them to be, but at least they went in the right direction.