Well, Hell.

So I've just about had it with my luck. Or maybe I should look at this situation as I should start playing the lottery.

So after my last entry, I continued dance classes. My muscles aren't liking me too much, but oh well. I missed classes on Thursday and Friday because I had to go back up to Cleveland. This time was to have a repeat bronch to check to make sure my rejection had cleared. I still don't have the results of this, but I was rewarded with a hospital stay.

On our way home Friday, after the bronch, I felt a little sore. I figured it was just from the biopsy and got in the car and fell asleep. When Mom and I got home, she woke me up and the pain had gotten worse. Wonderful. So I called the clinic to see what they thought I should do. "Go to your nearest ER and get 2 chest x-rays, you probably have a pneumothorax" Great! So Mom and I get back into the car and go to the Children's Liberty campus. They know me well there now...

Sure enough, the doctor came back in and I have a slight pneumothrorax - collapsed lung in fancy terms. After talking with Cleveland, they decided that best course of action was for me to be admitted for observation and to recheck my xray in the morning. I breathed a sigh of relief because they weren't talking about placing a chest tube... which is what I was expecting. So Saturday afternoon comes, it's time for the xray and I can't sit up in my own bed let alone move to a wheelchair. They had to transport me to xray in my hospital bed. I always feel so embarrassed being transported in my bed, I don't know why, just do. But we got the films and surprise, not only has the pneumothorax worsened, I now have fluid building up on the right lung. Fan-freakin'-tastic!

At that point they decided that they were going to observe me one more night and that they would give me real pain meds, not just a couple of tylenol. So once the morphine kicked in I was able to finally lay on my back. Up until that point the only comfortable position was on my left side. Sunday they made the decision that Cleveland wanted me up there, so transport was being arranged. I had an ambulance take me to Lunken airport, the plane flew me up the 40 minute flight, and then an ambulance from the airport in Cleveland to the hospital.

So now I'm back here at Cleveland Clinic. My blood culture results showed that I have some bacterial infection going on, so I'm back on IV antibiotics. Hopefully I'll be able to get home and away from the germy hospital Thursday, but we'll see. Next week I'll resume dance, I've been tutoring my neighbor after school for homework help, and I'll be starting back at Wendy's. Yes, I said it, I'm going back to Wendy's to work. What can I say, I'm poor and I'm bored and I know the manager will take care of me there! I just have to make under $980 a month and it won't touch my benefits at all.

There's more details, but I'm tired and this is getting long. I think it covers the general idea of what I've gone through this last week. Just gotta keep my head above water for right now! right?!

A little sunshine will do you good

So this increase in prednisone is killing me! I can't seem to stop eating and it's making my blood sugars so hard to control. Oh well, if a few extra shots means I gain a few extra pounds, so be it. It can only mean that I get this button out quicker, right?

The 9th was Cameron's birthday and we celebrated by going to P.F. Chang's for dinner. We ate so much food but I was still hungry when we left. Go figure. But that was the extent of what we did. We're trying to save our money so we can go to New Mexico to visit his family. I don't know if that's going to happen though with all of the flu things going on, my center is a little timid about me traveling. Especially with my white blood count doing funny things.

My WBC was low when I had all of my blood levels checked Tuesday, so they wanted it re-checked when I went for my yearly labs on Friday. I also had my full yearly PFT that day and my lung function has increased again! I'm now at 67%, which makes me almost tear up since it's been so long since I've seen those numbers and felt this good. To have a test show that makes all of the struggles I've gone through completely worth it. But anyway, the WBC came back a little higher, but they weren't able to do a differential (tell what kind of white blood cells there are) because the sample was too degraded. Lab error. I understand that this can happen, but dammit!! So Cleveland wanted me to repeat my labs Tuesday. I talked to them today and they said that my prograf levels were high and they had wanted me to have all of the blood tests redrawn, not just the CBC, so back to the lab I go on Monday to be poked again. Just what everyone wants to hear :)

Last Thursday Cameron and I were able to get out of the house and go to a play. We saw Sleuth at Playhouse in the Park. It was good, but I don't think I could see it again. The part that made it good was not knowing what was going to happen next so I think it's a see it once kinda of play.

Sunday I went the to renaissance festival with Adrianne and Sherri. I had never been to it before, so it was nice to finally be able to go and do all of that walking. I was tired after, but I like being this kind of tired. It's so much more rewarding than being tired from simply breathing!

And here's the best news : I took my first full dance class in 5 years!! That was Monday night and I was by far the worst in the class... all of my technique has disappeared! The important thing though is that I was there and I wasn't that short of breath and I finished it!! I'm still so sore though!! Back for more classes tomorrow night and then again Friday afternoon. Kelly and I are in the middle of picking out a song to do a duet to, which I'm pumped about!

Oh, and my neighbor's sister's results have all come back negative! It's been a very good week :) Beautiful sunshine and wonderful news all around!

OI!

So much has happened in the last month. It started out great with being able to go to a Red's game with Cameron and Jesse - a friend from WKU. They lost pretty bad, but I had a blast,even though I ripped my jeans falling on a curb! Cam and I went to his wedding a few months ago and it was great to be able to see him since he lives farther away.

A couple weeks after that I made my first road trip without a ton of medical supplies. It kind of made me giddy to just have a tiny duffle bag :) I went up tp Columbus to visit my friend Michelle. Other than the meds making me feel super sick when I was heading back home, it was a wonderful trip!

Once I got home I repacked for Cleveland for my 6 month visit/bronch/biopsy. I had such nerves going in to that visit but everything went fine during the exam. When I got home my Mom told me that one of my CF friends was sick and on a vent. His name is Danny and had his transplant almost 2 years ago. The following day Cleveland called and told me I was in the early stages of rejection again. Nothing big, just increased my prednisone and I have to go back October 2 for a repeat bronch to make sure it clears.

That Friday my boys came in from WKU and we all went out to dinner at a fancy restaurant. It was so much fun to see all of them (4 guys and me for dinner - kind of interesting) and it reminded me of how much I miss seeing them all the time like I did at school. The bad side to the night was I was home just a few hours after dinner sick in the bathroom. It was either food poisoning or a "gallbladder" attack. I say that in quotes because I no longer have one, but that's what it felt like. I spent the rest of the next day puking and in bed. Oh, did I fail to mention that it was my 25th birthday that day? Happy freaking Birthday! I felt better on Sunday and we celebrated everything then. I was even able to blow out all 25 candles on my cake in one breath - because I GOT NEW LUNGS!! It was awesome :)

Found out recently that my neighbor's sister has breast cancer so please keep her and her family in your prayers. Also, keep Danny's family in your prayers - his funeral was today. That's all I can really talk about those things, it's all still too new, too close, and too painful right now.

That's all of things for now. I should have more next week after a few more doctor appointments, Cameron's birthday and a play. Gotta stay busy and keep my mind off things. I may have to find a job to keep this much off my mind :)

Lots to report in on....

A lot has happened since June 8th when I had my surgery. I spent a total of 10 days in the hospital after that surgery when they gave me my last dose of pain meds and sent me home. That was on a Wednesday and Thursday morning I woke up in my own bed at home in agony. We ended up taking me to Children's emergency room for pain meds. They got me under control and then transported me to University hospital. If anyone has ever seen my face when I hear about that hospital, you'll know how much I hate it.

I was released on Saturday and arrived back home at 3:10. My "Yay Lungs" party started at 3 that day. It was an amazing party and I'm still trying to write thank you notes to those who attended. We had over 100 people show up - including Dr. Trapnell and his son. It was so touching to see everyone there, even though I was drugged up to the moon at that point. I did well for about a week and then Thursday rolled around again.

I woke up and couldn't get my pain under control again. I went back to Children's ED (They were starting to recognize me at this point - never a good sign) and after much talking, Mom and I drove to Cleveland to let them take care of things. I spent another 10 days there where they started some other drugs that were to help with pain and suggested maybe a nerve block would be the best course of action. My white blood cells were also improving slightly so there was no need for the bone marrow sample (THANK GOD!! I've seen 2 at St. Elizabeth and almost fainted during one... and if anyone knows me well enough knows that I have a sick fascination with surgery/procedure things so for this to get to me, it must be huge!) They got my pain and most of my nausea under control and sent me home. I got home on July 4th just in time to see my neighbors set off fireworks. Awww... fireworks for my homecoming :P

Now this time I only made it to Wednesday and I couldn't stop throwing up. I was taking the pain meds regularly and they caused my GI system to slow down to the point I couldn't take anything by mouth since I was already so full. So back to the Children's ED I go. They gave me pain meds IV again and then put mucomyst through my gtube. Now... For those out there that know, mucomyst is disgusting on it's own being inhaled... but in the gtube... *shudders* it's horrible!! It smells of rotten eggs and if you get the pleasure of getting sick on it, it tastes exactly how you would think it would... horrid. But, it did the trick and I was able to have a good bowel movement. That wasn't enough to make them happy though, so they admitted me and I then had GoLytely pumped into my gtube for the next 2 days. Now I know the general population knows what that is and it's effects. Finally Saturday they allowed me to eat... that grilled cheese and tomato soup and cottage cheese and applesauce never tasted so good in my life! I continued to eat like a little piggy all day Sunday.

Sunday night Cameron and I were able to make it to the last showing of Mamma Mia! which was amazing. We had box seats that were fairly high up and close to the stage. We could see everything and had so much fun! Nothing like cutting close twice with admissions and previously planned events!

Now I'm home and starting to get back to a normal routine. I made dinner the other night, which felt great to be cooking again! Dance classes will be starting up again soon and next week I'm re-joining my gym. They have trainers for free at this gym that help you get started with all of the machines, so that'll be nice. I'm just so excited that this is all behind me and that I can get some good use out of these lungs now!! Watch out world, here I come!!

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.....