Clinic Results

I mean to post this update yesterday, but got busy! I had my follow-up transplant clinic appointment Wednesday from when I was in the hospital recently. Unfortunately, it didn't go quite as I expected....wasn't horrible, but not good either.

My PFT's were slightly lower than the visit in December, but higher compared to September/ last Fall. My FVC was 1.58/47% and FEV1 was 0.99/37%. I usually don't have that big of a gap between the two numbers...so I was a little surprised. My midflow (FEF 25-75%) was 0.33 or 10%. Performing the tests today definitely stirred me up....evidently I've got a lot of junk inside (sorry, probably TMI).

In December, my FVC was 1.49/44% and my FEV1 was 1.10/40%. My midflow/FEF 25-75% was 1.05/31%. In November, my FVC was 38% and FEV1 34%. In September, my FVC was 35% and FEV1 33%. So today's #'s were better than September and November of last year. They weren't really concerned and neither was I. And plus, my PFT's don't always accurately reflect the way I'm feeling.

My WBC count was really high @ 15 something. Mine usually runs around 3 or 4...so definitely indicative of an infection. I haven't had a WBC count that high in probably 2 years. But the weird thing is, my WBC count with this last pneumonia was only 8 something...which is still pretty elevated for me. So we were all definitely shocked to see this number. I don't think I'm contagious in that aspect since I've been on antibiotics. However, I'm going to pay extra attention to those around me that might have colds, the sniffles, etc., right now.

I'm really frustrated and "tired" of being sick and not being able to knock out this dang infection. I knew I had pseudomonas growing in my sinuses from my ENT visit (and more than likely in my lungs again), but didn't expect it to be that bad. My xray looked ok, about the same as it was in December, and much clearer than with this past pneumonia. I am very dehydrated as well...which I had a feeling I would be because I've been thirsty like crazy. Also, in the lab this morning, it took them 5 sticks to get blood...UGH. They said my veins were dehydrated. Of course I'm not sure exactly how much of the dehydration caused the difficulty verses the skills of the lab technicians. One tech did get a vein, but I didn't have any pressure/blood flow to get into the lab tubes--weird.

I have completed 2 weeks of Cipro and about 1 week of inhaled TOBI. We (my doc and I) are hoping the TOBI as well as the final week (week 3) of the oral Cipro will help clear this infection up. I also did another sputum culture to check sensitivities, since we are now dealing with a lung infection and not just sinuses. I didn't realize you could have different sensitivities in the lungs verses the sinuses. If I haven't improved much in the next week, then my doc said we would probably have to do IV antibiotics...which STINKS that this is happening again so quick. Hopefully though, if that is necessary, we will be able to arrange home IV antibiotics. That will allow me to still attend classes. I definitely don't feel as bad as I did with this last pneumonia... I'm not as SOB and are not running any fevers. So as long as I don't feel worse, the home IV's will work (of course this is only if the TOBI doesn't kick in). So we'll see what happens over the next week. If you feel led, please pray that this infection resolves quickly, and that it won't interfere or put me behind in my classes again.

My doctor that I saw today did mention that it seems like these infections are brewing when I'm on my "off month" of the TOBI or not on any kind of oral antibiotic. He suggested alternating the inhaled TOBI with inhaled Colistin. I'm not too thrilled, as I don't want to be on antibiotics 24/7. But I guess if that is what it takes to keep me out of the hospital this semester, then I will do it. I haven't used the Colistin since before my transplant....so I'll be interested to see how it works.

My weight was up 5 pounds from December, which is really good, considering I had lost about 10 pounds with the gallbladder issues/surgery (which is a lot for someone my size). I'm very happy that the weight is starting to come back on :)

My back pain is doing better...still there and extremely painful at times...but definitely getting better. I've had to cancel my 2 therapy appointments this week due to a school exam and today due to not feeling well. I'm really going to try to be pro-active and stay well (which may include missing some classes if it is really cold weather outside). We are supposed to have possible SNOW (not just flurries) on Friday. I'm anxious to see if the weather people are right this time :)

At last but not least, I have a neurology appointment on Friday morning to evaluate the extensive shaking I'm having. I thought it was much better, but has been worse the last few days. Although I'm mostly noticing it in my hands verses my entire body like it had been doing awhile back. I'm sure this will be an interesting appointment...not looking forward to answering a million questions :)

Ok...so a long post...sorry. I hope everyone has a great Thursday...almost the weekend.