Tuesday June 16th- weathering another bump

Hi everyone! It's been a while since I've written on the blog. This is Becky, Jennifer's mom. We are in Cleveland Clinic and have been since June 8th. Actually came in on Sunday evening, for her surgery. She had fluid in the plural area that had gelled, so they originally were going to go in laproscopic and remove it. When they got in, they had to make a bigger incision (about 5-6 inches) and go in, scrape and peel it out of the area. She has been in severe pain and taking iv pain relievers, oral and using a lidocaine patch along with a fentanyl patch. The pain has bee so bad, that it causes her to have nausea, so they are giving her meds. for that also. She had 3 chest tubes, but now is down to 1, and waiting to have that removed. Hopefully, if not today, they can take it out tomorrow. Just speculating, so not sure. They want to do the angiogram to prove that the BAR procedure they did when she had the lung transplant, worked, so that is today, sometime this afternoon. It was supposed to be yesterday, but didn't happen. They also found that her red blood cells aren't producing fast enough or at all and her white blood cells are low. They gave her a shot for the white blood cells yesterday and that has made it normal. The red blood cells, they have called hemotology in to decide what to do about that. They did blood smears, but it just showed they were low. They have discussed doing a bone marrow test, and Jennifer is less than thrilled about that. Still waiting on the hemotology Dr's to come in. This was supposed to be a 3-5 day stay. They didn't know the surgery would be like it was, so that isn't any one's fault. The angiogram being pushed to today, not sure what happened. I think Dr. Budev saw on my face though that I've had enough and so has Jennifer. I went to buy more clothes to get me through the next day or two and hopefully we will go home. In the meantime, Jennifer is sleeping, which is the best thing for her right now. Hopefully, she will be ready for her party on Sat. In the meantime, we're just waiting.....

Biopsy

The biopsy came back Friday afternoon... no rejection again :) Always nice to have a little bit of sunshine after such crappy news on Wednesday.

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 :)