Getting Ready

 

It has been a week of getting ready...getting ready for our trip, getting my lungs in shape for a vacation, getting everything set that we are leaving behind (pets and house.) We are now two days away and things are in pretty good shape.

I was reflecting today on what a journey this has been. Back in April, when my surgery got postponed because my lungs were not doing well, I was afraid the trip might be jeopardized.

By the time of my rescheduled surgery, my lung functions were some of the highest they have been in the past three years. Surgery was flawless. Preventative IVs for it were a pain, but things went so well that I stopped them only 10 days after surgery instead of 2-3 weeks like I might have. Yay trip!

It was between that time of stopping IVs and still being on a lot of exercise restriction that my lungs started acting up again. When I was able to do pulmonary function tests about a month after surgery, my numbers were one of the lowest they have been in about five years. (Cue the 'CF is a roller coaster' cliche.) I was getting short of breath with hardly any exertion, but otherwise I felt okay. How was I going to manage being out west with the higher elevation (which can be an issue for me even when healthy) and what about all of the hiking and bumming around we wanted to do outdoors? Not to mention running around with all of our nieces and nephews.

The last few weeks have been a cautiously optimistic "Yay trip!" My lung functions, which I have been tracking every day, have inched slowly upward, but have also kind of stagnated. I have been exercising at about the limit that my back will allow, I am still on a decently elevated Prednisone. In short, I'm doing pretty much all I can do - and I'm still not where I would like to be.

BUT, as we set out on our trip, saddled with duffel bags of medication, supplies, oxygen tanks and my less-than-ideal but stable health I am thinking, I did it. We're going on the trip. We're going on the trip! We're going on the trip!! 

That, I guess, is the point of everything. Life happens, you have to adjust. If you're are lucky, you can keep moving forward. And if you're really lucky, you can go on a 5,000-plus-mile road trip with your favorite person, see all kinds of amazing things and visit the people you love most in the world.

See ya on the flip side.

L

By the Numbers

With CF, sometimes it feels like I live life gauging my health by numbers: Oxygen saturation, PFTs, temperature, weight, Tobramycin levels, white blood cell count, etc. These are all things that my doctor and I keep fairly close tabs on.

However, one of the first lessons of CF is to not just rely on the numbers. Sometimes we are sick but the numbers haven't caught up to that, and same thing with being on the mend. You need to treat the symptoms. Sometimes lab reports say that your body is resistant to antibiotics, but they may actually work for you. The lab reports are just a guide. Thus, there is a good amount of detective work involved with this disease and - I believe - this is why many cystics have a very fine tuned intuition when it comes to their health.

It hasn't been a good few weeks for my numbers. Oxygen sats, which usually run 98% or so, have been low-to-mid 90s causing me to need supplemental oxygen during exercise. My PFTs, which usually live in the mid-40s, have gone well into the 30s. (To give you an idea of what this means, an FEV1 of 70% or higher means very little lung involvement; an FEV1 of 30% or lower means you are starting to think about needing a transplant.)

This happened to me once before - a large, scary, unexplained dip - about five years ago. We did course after course of IVs with very little impact. I had a picc line in for almost three months. I went to Duke for a second opinion and they said I should think about transplant which scared the hell out of me.

Eventually, a combination of starting to cycle some new inhaled antibiotics, starting on allergy and Xolair shots, Prednisone and exercise were what got me out of it. I will never forget the thrill, the elation, the triumph! that came from finally getting my PFTs back up five years ago. It took nine months and a lot of hard work. My doctor and I proved that Duke doctor wrong. 

This time, I am already cycling all of the mainstream antibiotics, I am still doing the allergy and Xolair shots, so increasing my Prednisone and exercise are all we really know to do. (Of course I still have to be careful with my back and exercise...can't do vigorous cardio more than every other day.) We did an xray (unchanged) and a CT scan (normal) last week to rule out blood clots in the lung or other things we might not otherwise be able to see.

All of this has left me feeling down and discouraged. This sucks! I'm not ready to be more sick, more of the time. I'm not ready to be that person who is always gone from work, who eventually needs to give up working, who needs to be on oxygen. I'm not ready to slow down, to stop traveling, to do less with my friends, to be tired at the end of the day from nothing.

But I think this important stuff for me to process - even, as I hope, if this does eventually just become another bump on my journey. I am so fortunate to be surrounded by an amazing support system of friends, family and co-workers who want nothing but for me to put my health first. I don't know how I could do this otherwise. THANK YOU!!

It helps having something to look forward to

In approximately three weeks, Todd and I are scheduled to leave for our excellent northern/western adventure driving to Cleveland, Michigan and Montana to visit family and vacation. We are planning to be gone for a total of three weeks, which makes it the longest vacation we will have ever had together!

Leading up to that, it has not been the easiest last couple of months with my back surgery and then getting a pretty severe lung exacerbation a couple of weeks after that. I have been on IV antibiotics for over two weeks now and while I have improved, I haven't improved tremendously.

I usually keep a fairly positive attitude about my health. But I have definitely struggled some the last couple of weeks. See, it is one thing to get sick, need time off work, have to go on IVs and have life disrupted for a couple of weeks. It is quite another to get sick, have your sats go so low and get short of breath just doing normal things, feel good enough to be working some but not be able to work enough to get everything done that you want to, feel like you are doing everything to get better only to see teeny tiny steps in the right direction. I guess what I'm describing is getting "CF sick" versus getting "super CF sick."

In my experience, getting super CF sick often involves oxygen, lots of antibiotics and a lot of time...as in months. Unfortunately, with this trip coming up, it's not the best time for my oxygen saturations to be running low (they are better than they were but still not really getting above the mid-90s consistently) since 1) being on vacation we like to do things like go out and hike, which requires exertion and 2) my sats run lower out west anyway because of the higher elevation.

I can make arrangements for oxygen, and we can probably figure out the antibiotic thing - if I still need to be on something, a combination of orals and inhaled would probably tie me over - but time is the tricky thing. I guess it wouldn't be the first time going on vacation when I wasn't feeling optimal. But I wish it was different.

All this is really to say that when I am sick - especially super CF sick - it helps having things like cool trips to look forward to. I feel fortunate that I have been able to do so much traveling because I know there will come a day when that is not possible. Sometimes I feel like Todd and I are foolish to plan so much. But what the hell. When you stop making plans, then what are you really waiting for?