15 Weeks Tomorrow

Tomorrow marks 15 weeks since I've been transplanted. It's weird how it doesn't seem like it's been that long, but at times it feels like it's been forever. Then at the same time, my mind wonders when the transplant is going to happen. Guess it's good that my body doesn't recognize what is going on... it just accepts the new lungs as the old and goes on with living.

I got back from Cleveland again last night. It was my 3 month appointment with a bronchoscopy. It was a fairly good visit. I had a chest CT and Dr. Budev said that my lungs looked "stunning" which of course made Dad and I smile. My kidney function and liver function are both completely normal, which means my body is tolerating the drugs well. The only downside to the drugs is the fact that my hair is thinning, but she said that if I drink knox gel mixed with some OJ that it'll help my overall hair/nails/skin health.

My chest xray and CT both showed that I have fluid around my left lung again. I also had a decrease in my lung function which they've contributed to the fluid. Except, they're thinking it's not really fluid in the liquid sense. Turns out that the fluid has solidified and now requires surgery to remove. I thought I was done with all of this surgery and falling lung function garbage. Oh well, maybe after this one, right? The surgery is tentatively scheduled for the week of June 8. I'll post later with the results of the biopsy - here's hoping that it's negative and there's no rejection :D

All the Results

So I'm going to backtrack a little here. I forgot to post about my first appointment with Dr. Trapnell since transplant :)

My weight was down (98lbs) since I'd been so sick. The Tuesday before my appointment I spent the afternoon in the ER getting IV fluids and anti-nausea meds. I wasn't even able to keep water down that day... ack! So I got a prescription for dissolvable anti-nausea pills and those helped to at least get my meds and a little bit of food down. Cleveland had also stopped my Cellcept which they think was the culprit. My lung function is still holding at about 63% and I couldn't be happier!!

The following Monday was when I got the phone call from Cleveland saying that they wanted to admit me. I had my bronch on Tuesday, came home Wednesday. On Friday they called and told me that I had (*drum roll*) No Rejection!! Plus, the fluid from my pleural effusion (the fluid around my lung that they tapped) didn't have any signs of yeast yet. Keep your fingers crossed that those results stay the same!! It takes a long time for yeast to grow, so there's still a possibility that it could show up but I've decided that it's not going to grow anymore ;)

I went for my bloodwork today and my white blood count is still climbing - I'm at 4 now. Remember 7-10 is "normal" so I'm half-way there! I should be allowed to go into public without a mask as of Friday (it marks 3 month post-tx) but I may keep it a while longer with that count being so low. But I'm definitely ready to be without that mask and not have people staring so much. Especially right now with the whole swine flu scare stuff. I guess I really SHOULD keep my mask though with all of this going on... Oh well, gotta have SOMETHING to complain about :P

Back Again

So we had another little bump in the road.

I've been busy getting things together for the CF walk and preparing for my trip to Cleveland on Mother's Day. Well, that trip has been canceled since I just got back from it.

I went for my normal routine blood work on Monday and found out that not only is my white blood count low (2.3 - eek!) but the culture from my last lung tap came back with yeast in it. Great. So Monday night Mom and I drove up to Cleveland and I was admitted to the hospital. Tuesday they went ahead and did my bronch and tapped my lung again. Today (Wednesday) I was discharged since everything is looking great. The only changes I have right now is that they are holding the Cellcept and Valcyte (the Cellcept they think was causing my nausea and vomiting last week and the Valcyte can cause a low white count) and they've changed my antifungal to Voriconizole. I've been on this drug before... it's just a stronger antifungal than the prophylactic one I was on.

I go for more bloodwork here in Cincinnati on Monday to make sure my white blood count is continuing to go up. I should know the results from my bronch by then too. I'll be sure to let everyone know what that all shows as soon as I know :)

Back from Cleveland

We're back from Cleveland now. I've waited on posting so that I had all of the information from Cleveland to avoid multiple non-coherent posts.

Mom and I left Sunday afternoon and stopped at the outlet malls on the way up. It was a beautiful day and I was able to walk the entire mall!!! Plus, I was able to hold a conversation while doing it - so awesome!! As a reward, I bought myself a new dress and some chocolate :) We then got in the car and finished our trek up to Cleveland. When we got there we ordered Rascal's pizza (which, if any of you remember, is the place that kept my family well fed with wonderful pizza while I was in the hospital... plus delivering beer while I was in surgery - haha!!) and then trying to get some sleep. Mom and I don't share bedrooms easily - I'm a light sleeper and she snores (tee hee)

So Monday we get up and get ready. I was more than ecstatic to be able to get ready in under an hour since I didn't have breathing treatments to do!! Plus, my overnight bag was smaller than Mom's! NO MORE HUGE ROLLING SUITCASE WOO HOO!!!

I had bloodwork at 7:45, got breakfast at the little cafe there (yummy breakfast sandwiches), xray at 9. Mom stayed down in xray and waited for my films to be printed while I went for my pft at 9:30. My pfts are at 63%!!! They haven't been like in almost 10 years! Now if I could just have my weight and muscles be the same, life would be perfect ;)

I met with Dr. Budev and she was very happy with how I am doing. The only issue that she saw was I had a little fluid building up around my left lung again. No big deal, it's normal, but they wanted an ultrasound to see if it needed to be drained again. So on my way to Infectious Disease I had an ultrasound of my back to mark where the fluid was and more bloodwork to check my INR level to see if we could even tap with with the blood thinners. My INR was 2.2, which is therapeutic for treating clots but doesn't work for sticking a needle into my back. They've decided that they're just going to see me back in 3 weeks and deal with the fluid then since I'm still improving and feeling well.

I also had an ultrasound of my arms and all of the clots have resolved except the one near my port. This one has shrunk though and there is good blood flow around it, so they're happy :) and so am I.

I had to go to infectious disease since my old lungs had histoplasmosis (a yeast) and they just want to follow me a while to make sure that the yeast doesn't find it's way back to my new lungs. Being that I live in the Cincinnati area and this yeast is naturally around the river, I run the risk of culturing it again. Being that they know this, I'll just be monitored and they have a plan for treatment should I show symptoms. It's always reassuring to hear that they have a plan before things become an issue than to have them be reactive about things.

Mom and I finally got to the car at around 4:30 and were desperate to find food since we hadn't had lunch yet. With all of the appointments and running, there wasn't time to stop! We managed to find a Skyline just a few minutes from the hospital and got some conies and I got a 3-way potato - YUM!! Poor Mom was trying to drive in rough weather and heavy traffic, so she kind of had to watch me inhale my potato before she got to start her food. I did eventually give her a packet of crackers though... she's lucky she got that being I'm on prednisone and well, you don't mess with food near me when I'm on that stuff! My cheeks will eat your first born before giving up any food :)

So overall, we had a wonderful visit and I got back in about 3 weeks for my bronchoscopy, angiogram (for the BAR study - the extra blood vessel that was attached), and possibly tapping my lung again. I don't have the date yet, but will let everyone know as soon as I do!

Also, I plan on doing Great Strides this year... and actually walking!! It's May 16th and would love for everyone to come and walk with me. I'll see most of you Saturday at the Egg Hunt, so expect to be hit up for a shirt order and a commitment to walk :)

Quick Updates

So not much to report on, which I'll take :D

I got my blood levels drawn yesterday and my magnesium has fallen, yet again. Right now we're just going to increase my oral Mg intake to 3 times a day. If that doesn't work (they'll re-check the levels Monday at Cleveland) we'll either change magnesium tablets to a different compound or do IV magnesium. No big deal, at least we have a plan.

Cleveland has also decided to cancel the broncoscopy for the time being since I'm on coumadin. It would just be more difficult to admit me in the hospital for the 5 days prior to do the IV heparin to do the bronch and then stay to get my coumadin levels back to where they need to be... sheesh. The alternative would be to switch me to heparin or lovenox injections, but my kidney function isn't where it should be in order for me to have this option.

So Mom and I will leave Sunday night and go up to Cleveland for our appointments on Monday. We'll be home Monday night hopefully by dinner... I know that's wishful thinking, but we'll see :)

Kelly's competition this past weekend went much better than the weekend before. She scored a 1st place with her solo and the group dances scored "ultimate victories" - it was a weird scoring system... but the group dances also placed overall in the age categories! I was so proud of her!!

That's it for now, I'll post again after we get home from Cleveland!