From the Blogposts » inbox

Annual CF Clinic Visit 2010

TGHToday was my annual clinic visit. Not the dreaded annual, but it was not my favorite day, until just about half an hour ago when I found joy despite the bad or discouraging things of the day. I have to preface this with acknowledgment that Sue (my coordinator) told me that I wasn’t allowed to blog about today while I was still sad or upset about the visit. Now that I’ve found my joy, I’ll start writing – you know I’ll still be transparent with you about all of my ups and downs, though. Just know that I still will go to bed a very happy man despite CF and despite some things that made me feel less of myself.

What the annual involves

At the Tampa CF Center at TGH, the annual visit includes a full blood workup, urinalysis, sputum, PFT, doctor consult, dietician, social worker, and chest x-rays. They drew 9 vials of blood in the time it takes me to donate a pint – a hilarious 2 minutes to me. Next is the standard PFT that I showed from my last clinic visit. Then I went to radiology in the main hospital for my x-rays and hoofed it back as soon as I could (about 20 minutes later) for what is usually the doctor. He was running late because they were a doctor down and I got the impression that there was a recent transplant that he was attending to. I got to see the social worker before the doctor, but then it was him (head of pulmonolgy), the dietician, a surprise test, and then a second consult, and off to my next thing. I got there a tad before 7am and was out at 11am, but I’m usually out by 8:30 when both doctors are there and it’s not an annual.

Not a happy camper

My day pretty much started out bad with my PFT results. Full PFT resultsLast clinic was yet another progressive increase in my stats in order since February: 27%, 34%, 36%, 37%, and then today happened. I blew a 35%. Over and over and over. I was fuming at myself. Livid. I tried to rationalize the data as a result of running last night and being tight. Sue could tell I was upset and looked at the numbers and held the sheet up and very matter-of-factly informed me that the doctor doesn’t just go by the numbers. I’m not necessarily sliding just because the PFT says I am. Quality of life, activities, and general well-being are just as much a factor – within reason. Blow a 24% and I guarantee you an IV dose before you leave clinic (been there, done that, got the t-shirt).

Also of slight concern to me has been my weight loss, however my 123.5lbs this morning, whilst representing a 9lb drop since August, does not concern either Sue or the doctor a bit. He actually thought I was too “fat” then, retaining water. Now I am wearing my weight well and representing true weight gain on considerable proportion from my adult baseline of ~105lbs. I still want to get up to a much higher weight, but I must not be discouraged at the time it takes to gain true weight, not just becoming a bloated pig like over the summer.

Another theory about the PFTs

The BoxBoth Sue and the doctor believe that my CFer diaphragm is blowing too hard and resulting in collapsed airways. They said there are some weightlifting brothers in clinic who can do that because they are so fit. They can run and lift with no problems, but their test results suck, whereas a normal person who blows a 100% doesn’t have the equipment we do. I am, in fact, well-endowed in the diaphragm department.

To be sure, they ran me through a full PFT in “The Box.” I recorded the whole thing, but there is a lot of dialog waiting for the computer and our mandatory wait times between certain sections. After the whole thing, which lasted about 30 minutes, I left with nearly identical numbers to the earlier test and also to each other during the testing, which even included 4 puffs of albuterol. Nothing on the test showed any suspicions of foul play within my lungs due to advancement of the disease and even confirmed that what lungs I do have left are performing quite well (94%) despite having issues with FEV1 and my small airways. My peak flow was even far above baseline. I just can’t get the air out in the time both allotted and required for good numbers for the test. One second is a long time when you can blow 5.7L/s but only have 2.4L of volume. Of course my numbers are falling short. That revelation took over an hour of studying ALL of my numbers from both tests and my historical numbers. I finally feel okay about them now.

What the future holds

The plan is to continue gaining some weight despite the training, come back for clinic in February before the 5K race, and see how my lungs are performing then. The doctor wants me to get a finger pulse oximeter off eBay to wear during running because he says I shouldn’t de-saturate during exercise because of my 94% oxygen efficiency. I found a nice one for about $87 that I’m considering, but that’s not exactly cheap. Medical is medical, though.

Also very exciting, I had both Sue and my respiratory tech tell me they will be training and running with me in the 5K!! I even have the RT on camera saying it, which made Beautiful smile and laugh when she saw it unfold on my phone replay. Now I really, REALLY have to do this, eh?

The joy I found tonight? That will have to wait until I make sure Beautiful is okay sharing. No, there is nothing in the oven.

Comments

  1. Barry Moltz says:

    Keep bouncing!

  2. Come on man, you can’t beat yourself up about a few % points. The weight change really skews the % pred as you know. Plus there are so many other variables, temp, pressure, when they last calibrated the machine. I love your tenacity, but you are doing your best and that is all we can ever do. Chin up and kick some ass.

  3. Ken Ballou says:

    Jesse, you continue to impress me..you are a true champion. I can relate to the feelings that you are having while visiting the clinic, especially since we share the same condition, site and dr’s. I purchased a pulse ox before my transplant…it was one of the best purchases that i ever made. I think its exciting that the coordinator and respiratory tech is going to be running in the 5K with you. I would like more information on that? ttyl my friend. Keep up the good fight!

  4. Keep at it dude! PFT’s annoy the crap out of me, especially when it feels like I’m blowing a good number. But guess what? Incentive to train harder and really get your lungs into shape.

  5. Kristi Bowers says:

    can’t wait to hear about your joy. sorry about the pft’s. keep your head up. praying for you.

  6. Don’t get hung up in the numbers hun. There are so many factors that can play into your PFTs. For example, Greg’s PFTs just went up. Why? Because he is a year older and the scale changed. It’s just a numbers game.

    Let your body tell you how you are feeling. You and Beautiful know how your body is doing better than any machine out there. Follow the doctor’s advice but look inside to find your true status.

  7. I know PFT numbers can be so discouraging, esp if you’re feeling great and you don’t blow a number that is as great as you feel. 🙁 I wish you the best in training for the 5K! That is totally awesome!

  8. At some points in our lives it’s amazing to find our joy, or even recognize it if it came to us with a bow and a gift tag. Great that it’s there for you- whatever it is.