First Tune Up

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welshwitch

Guest
Hi all,

well I am now officially done with my PICC line and have successfully completed my first CF related "tune-up." It was unexpected and certainly a shock to the system to have to take such drastic measures, but I got through it.

The first 2 weeks of February I had a fever that wouldn't go away. I had never had that before. Instead of going to the dr. immediately like I should have, I waited 2 weeks, going to work most of that time. Symptoms I had never experienced: shortness of breath, trouble going up stairs, and extreme fatigue. But surprisingly no increased cough. I thought there was no way this was a pulmonary thing, but rather a severe flu.

When I got to the doctor, they immediately took my vital signs and measured my PFTs. My heart rate was way too high, my blood pressure was off and the worst part: when I blew PFTs they were in the high 40's. I had always had PFTs in the 100's before!

This was an absolute shock and I never imagined this was how my first tune up would go. I was given the choice of going immediately into the hospital or doing IV's at home. Terrified, I opted for the IVs at home option. But it took several days for the IV meds to get ordered. I spent the next several days at my parents' house feeling terrible and fearful. I had to go to the hospital and get the PICC line put in, another new thing for me. Finally, I had to learn how to do the IV's myself from a nurse while I was still incredibly sick.

In retrospect I maybe should have just gone into the hospital. The amount of work and strain it put on myself and my family with this unexpected illness was just awful. But I wanted to be able to be home and not in a scary hospital by myself.

After 2 weeks of home IVs they took the PICC line out yesterday. Admittedly, I feel GREAT and am looking forward to getting my life back. But the whole experience just felt like such a setback. I don't know if I had pneumonia or a CF exacerbation or just a severe infection. All I know is that it scared the crap out of me and was a huge wake up call. CF may finally be starting to catch up with me.

I'm hoping and praying that this doesn't happen again, or if it does, that I have much more control over the timing of this. Like, "Oh, I'm feeling like I need a tune up, let's do two weeks of IV's next month." Instead it was a pseudo-emergency situation. It just seemed to come out of nowhere, like my body just "crashed."

I feel like I had been doing every thing right. I got a flu shot (which probably didn't work in retrospect), I had been running several miles per day, had been working a low stress job. But then this happened anyway. I always imagined my first hospital stay or tuneup would be on my own terms, something I could schedule. This was just the last thing I was expecting.

On a more positive note, I'm MUCH BETTER and grateful to be "back." I'm going to do PFT's next week with my doc and I'm hoping that this experience didn't ruin my 100% numbers. In fact, maybe they will be higher? Overall, I'm a survivor, and this has made me tougher.

Stay strong everyone!
 
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welshwitch

Guest
I feel like the above post is kind of negative. It's pretty cool that I've made it to 35 without any real medical intervention with my CF. Also, I am GRATEFUL GRATEFUL GRATEFUL for my health insurance and great medical care. This is mostly just the shock and unexpected surprise of it all. Power on!
 
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ethan508

New member
Thanks for sharing your experience. PFT from 100 to 40s is scary, let us know how much they came back. I've yet to be hospitalized and it scares me too. I too think I will be able to go in on my own terms, but then again my own terms are to never go in.
 
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believingjesus

Banned
So glad you are doing better! Also glad your family was there to help you through it. I hope your pft's go much higher next week. Thank you for the update!
 
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Melissa75

Administrator
Congratulations on finishing your first tune-up. I've been following your experience and kept meaning to post something like a 'hang in there" and a 'good luck.' Well, I'll post now. :) Thank you for sharing your experience!

It's scary to hear how much your FEV1 dropped, without you realizing. But it's so hard to know what's going on in our lungs, and even taking past experience and expecting the future to have the same rules doesn't always work. Do you know what bacteria were acting up for you? Did they think it was a viral and bacterial combo?

In my case (non-CF bronch for anyone wondering. I need to make a signature again:), what surprises me is that my most acute infections--high fever, pleuritic chest pain, chills, SOB, blood--grow run-of-the-mill bacteria. And my CF-pathogen infections (PA, Steno) creep up on me with a slight drop in FEV1 (maybe 10 points) and more gurgles and rattles. Nothing so dramatic as to warrant a tune-up, so I appreciate learning from your first one.

I wish you the best in getting your strength and numbers back up. It sometimes takes me a lot of months to get to baseline. Years...I recaptured my early-thirties baseline last year at 39, but it felt oddly won because my FEV1 in liters was/is still dropping each year. It just didn't drop as fast as the cohort of normal 39 year olds. Whatever, I'll take the gain!
 
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Oboe

New member
welshwitch said:
I'm hoping and praying that this doesn't happen again, or if it does, that I have much more control over the timing of this. Like, "Oh, I'm feeling like I need a tune up, let's do two weeks of IV's next month."
Click to expand...

You get to a point where this is the case. For me, I start running these stupid little temperatures every night. Not fevers, just like 99.5-99.9 and my head's kinda fuzzy, then increased mucus and decreased appetite on top of it. At that point, I start expecting to need it then a simple call to my clinic is usually enough to schedule an admission.

welshwitch said:
Instead it was a pseudo-emergency situation. It just seemed to come out of nowhere, like my body just "crashed."
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This one happens too, though. Two of my last three admissions started out as simple sinus infections that just drained down into my lungs causing some pretty nasty infections over the course of like a week. Fortunately, I think I have that under control now.

It's not something anyone should have to get used to, but you do. Glad you're feeling better.
 
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windex125

Guest
Glad to hear you are so much better, I had my first picc line at the same age wow, I turned 60 in December I don't think I ever had pft in 100 range, as I don't remember even askg about them. I lived a long time in denial, took all the meds did the treatments but my early 20's into 30's never had a major issue to call for IV meds. I will not write anything more negative abt how life changed over the next 30yrs. as we all hv different situations. I always love to read that their are runners with CF I cannot run now even if I wanted too. I never had the interest in running other when I was mugged for my pocketbook (do we still say pocketbook) I chased that guy for blocks fell a few times knees all bloody, but I got it back. (I was in my20's) I had just bought that bag the week before, I was not giving it up...Now at 60 I just say hey I woke up today I feel good, another day to deal with my retired husband, and 24yr old son AHHHHHH life is good. You take care now. Pat-60/CF
 
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windex125

Guest
I am losing my mind when I ckd back I saw I wrote you previously I guess I did not ck that first lol
 
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welshwitch

Guest
windex125 said:
Now at 60 I just say hey I woke up today I feel good, another day to deal with my retired husband, and 24yr old son AHHHHHH life is good. You take care now. Pat-60/CF
Click to expand...

Thank you for this, Pat! I need motivation to keep going. Your life sounds pretty nice, I hope I too can have that one day! <3
 
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jaimers

Super Moderator
So glad you're feeling better! I had a similar experience with an unexpected and drastic drop in PFTs. And although it wasn't my first admission it was still scary! It seems like generally your health is pretty good and I would expect your PFTs to bounce back. If I recall correctly you're a runner right? Or at least exercise regularly. Even though it really sucks sometimes exercising while doing IV antibiotics can really help boost your PFTs back up faster--or at least this is the case in my personal experience.
Its impressive that you took on home IVs from the get-go for your first course of IVs! It can be really difficult to be nurse and patient at the same time so I'm glad your family was there to help you. Even though my doctors would like it if I stayed in the hospital for the full 2 weeks of treatments I don't feel like I get as much benefit as when I go in for a few days or a week and then finish out the remaining time at home. I'm significantly less active in the hospital so I find that I get deconditioned pretty quickly and returning to my normal routine is much harder. So for me the few days in and then the rest at home is best. It's nice too for those first few days to only focus on treatments, airway clearance, etc. and not have to think about house/regular life things.
 
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TreasureGoddess

Member
Thanks for sharing your experience! Glad you're feeling better for sure. My son does Tune-Up's about 2 times a year, in fact we're heading in tomorrow for one for him. He asked to move up the scheduled appointment as he wanted to feel better and he's able to realize when he needs them, which is pretty cool. We always start in the hospital as it's SO much easier to get the medicines going and have things monitored there as well as be able to receive the respiratory treatments and such. Often we finish the 2nd week at home or part of the 2nd week if he's showing signs of bouncing back, feeling better, higher energy, lower coughs, rising PFT's etc. Though it can be hard to check into the hospital, and you don't get a lot of uninterrupted sleep, it's worth it for our family to get blasting on the extra attention & meds we need.

The point you made of having to deal with all the medicines and things when you were feeling so sick was a big part of why we go in for the admission. Both my son and I are usually exhausted when it's time for IV meds and sometimes it's much nicer to be able to doze and rest as much as possible while others are taking care of the meds. I will say I always check what IV meds and pills are being given to my son and now that he's a teen ager, he checks as well. I don't mean check in and "check out", but just don't rule out the hospital as being too much to deal with when it can actually be a real help to your healing.

YAY for you feeling better! Hope those PFT's are rising back up again. Extra nebulizers and extra chest clearance therapies will help there as well, check with your team to see what the plan is for improving that day by day!
 
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welshwitch

Guest
Hi all,

wanted to update you all on my progress. My PFT's are back to 92%, which is good but I'm still not satisfied. Usually they are over 100%. My weight is still down 10 pounds, they said my heart rate was a bit high. The only other thing was that my doc saw something funny on the Xray (looked like a hole) so we're going to do a CT scan to see what's going on. He said I may have a new fungus of some sort that we'd have to treat using a variety of methods. But, one step at a time. I'm not 100% recovered, but almost there!
 
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triples15

Super Moderator
welshwitch said:
Hi all,

wanted to update you all on my progress. My PFT's are back to 92%, which is good but I'm still not satisfied. Usually they are over 100%. My weight is still down 10 pounds, they said my heart rate was a bit high. The only other thing was that my doc saw something funny on the Xray (looked like a hole) so we're going to do a CT scan to see what's going on. He said I may have a new fungus of some sort that we'd have to treat using a variety of methods. But, one step at a time. I'm not 100% recovered, but almost there!
Click to expand...

Oh darn, sorry you're not back where you want to be. :/ I just wanted to mention that sometimes I'm not quite back to baseline when we finish IVs, but by my next appointment or so I am. I always think my body needs a little time to recover from the IVs etc. I know you mentioned you were exhausted from the med schedule and you also worked some too. I'd try not to worry that the loss is permanent just yet. ;)

As for the spot on the xray, that stinks, but we'll hope it's nothing much. Let us know what you find out. Keep fighting the good fight!! :)

Good luck and take care,

Autumn

PS. Also glad to hear the PICC line and everything went pretty well for your first go round! It is definitely a learning curve, but it sounds like you picked it up quickly!
 
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welshwitch

Guest
Thanks Autumn! It's a process, but this is all new to me so I'm trying not to beat myself up too much about it :)
 
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welshwitch

Guest
Hi all,

time for another update. Turns out the spot on the X-ray was nothing. My doc doesn't think there is a new "invasion" of fungus or what have you. However, my CT scan (a more detailed view than an Xray) showed scarring and holes in my lungs in the upper lobes. But my lower lobes still looked good. Not ideal news, but on the other hand, not a surprise for a 35 year old with a chronic lung condition. So, I'm happy to be "back" and I'm feeling 120% now. I'm back to running my daily 4 mile runs up a STEEP STEEP hill. I didn't do a PFT but I would bet that my #s would be back to the 100's. My energy level and appetite is back to where it needs to be so I am happy! (L)(L)(L)
 
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