Andrew's first Thanksgiving

I know I've gotten really bad about updating my blog. What can I say, it's hard to do when you're busy :) and I like it that way :) but this is my late Thanksgiving entry.

I had today off work and didn't have any appointments, so I spent most of the morning catching up on my fellow CF blogs and forums. So much has happened with them, including a lot of CF deaths. It just hits on a deep level that is hard to describe. There's been a few CFers that have received their lung transplants, which always makes me smile. Then there's one cystic who's blog I've been following, she's #1 on her list right now. Maybe she'll get lungs by Christmas! Reading everyone's transplant journeys makes me remember my whole experience and I can't help but smile. While it was one of the hardest things I've ever done, the rewards I've received after have been wonderful!

It all reminds me of all that I have to be thankful for this year. I'm alive... above and beyond anything else, I AM ALIVE! Truth be told, I wasn't sure I was going to be here this year for Thanksgiving. So I leave this entry with just a simple thanks... Thank you to all of the organ donors (especially mine :) ), to all of the members of CF.com which have given me such support, and most of all, my family. Without them I wouldn't have had the strength to get through this last year.

Yay!!

So it's been a month since they biopsied and collapsed my right lung. That's all healed and I'm returning to dance tonight. I didn't quite feel up to dancing since I was dealing with the pain in my lung. It wasn't constant, just when I took a deep breath. Ya know, the thing you do when you're dancing and exercising :)

I started working last week. Most of Sunday I spent with my head in the toilet because of an antibiotic I was taking for infiltrates they saw on my xray when I saw Dr. Trapnell. They stopped the antibiotic and I felt much better. Thought I should give work a try since I was scheduled and knew I wasn't contagious. So Monday I went in and tried to work 11-2. I spent most of my shift sitting in the back office because I kept getting light headed and whiting out... not black out, white. I think it was because I was dehydrated from being sick Sunday. I worked again on Tuesday and only had to take one 5 minute break because I felt a little weak. I worked again on Friday and that went much better.

Thursday I was back up in Cleveland for the repeat/9 month bronch. Cleveland does bronchs with biopsies at 3 weeks, 6 weeks, 3 months, 6 months, 9 months, and one year. Then I'm done unless a problem comes up. It was the never ending day... 7:30 started it all with bloodwork, like always, and my bronch was at 3:30. We finally got in the car around 5:30 and didn't get home until 10pm. Dr. Budev did my bronch this time and said that everything looked wonderful but wouldn't be surprised if I had a slight amount of rejection because of my anti-rejection med levels being pretty low. Well, here's the best part. I talked to Cleveland today and everything about the bronch came back negative. So I have to reduce my prednisone and I'm off all of my antibiotics as of tomorrow! yay!

So off to work I go tomorrow for 3 days and then tap on friday :) Life's good again :)

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.....

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 :)

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!

Rough Days

Is it just me, or is God calling a lot of the CFers back home lately? Every time I log into CF.com anymore there's at least one other post saying someone else has passed.

I found out yesterday that Jessica had passed away. My family met her husband in the ICU waiting area the night I was transplanted, she had received hers that morning. There were a lot of comlications after the surgery and they ended up having the trach her. Come to find out later that she had B. Cepacia which infected the new lungs. She passed away on March 8th.

I've heard of people having survivor's guilt after transplant but I always assumed it was for the donor. I never expected to have such guilt over hearing this news. There's a whole lot of fear attached to all of this too. I'm 6 weeks post tomorrow... Just 6 weeks. It's just hard to think, that could of been me.

On a brighter note, Kelly's competition went well this past weekend. Her team got several overall high scores and she got sterling silver with her solo. Not as good as she wanted it to be, but she did well and we were proud of her. Solos are hard and this is her first year doing them... and it's in lyrical, which in my opinion is the toughest to compete in! She has another competition this weekend, which I will be at again and I'm sure they'll do great like they always do :)

Busy Busy Busy :)

Over this last week I've been pretty active. No marathons yet, but as soon as my legs are strong enough, watch out!!

Got my INR checked today at the anticoag clinic and they said it was perfect :) 2.2 so they don't need to change my coumadin levels, which makes me happy. Got a call from Cleveland about my other drug levels, they're doing great too! Only thing is one of my white blood cells is a little on the high side so they're increasing one of my meds which will knock that number back down. Glad to hear that they're so on top of things like that :D So there's the boring medical part of all this... on to the fun stuff!!

Sunday was my first outing since I've been home. I did it up big, LOL. Cameron and I went to Smokey Bones for lunch. Apparently, if you walk into a restaurant wearing a mask and want a table for 2, you get seated immediately. hmmmm, maybe this mask isn't such a bad thing :P We then went to Kroger's since I've been craving fruit and dairy. I was able to walk around the store for a good while and when I got to the car... I WASN'T SHORT OF BREATH!!! My legs hurt like I was running, but Andrew was nice and strong still. It was amazing!!

Monday was lab drawl day, so I got poked and then got some yummy McDonald's breakfast :) I spent most of the day on the couch though because my legs were a little fatigued, haha! I did go see Karen Vaske (the angel lady) that afternoon though. Just some theta healing to help with the side effects of all of the drugs. Nausea, tremors, hair thinning - ya know, the fun stuff :) Tuesday was boring, but my legs had recovered.

Wednesday Cameron and I decided to tackle Kenwood mall. I only did the lower level so we could finally get his birthday present. His birthday was in September and I just hadn't felt well enough to go to Fossil with him to pick the watch out. I was able to do that, get some new lotion for my face at Clinique, eat dinner, just overall, be normal. Well, as normal as one can be with a mask on their face that has little multicolored bandaid people on it, LOL!!

Thursday was spent doing some laundry and watching the WKU game later that night - GO TOPS!! and Today I had my clinic visit and then Mom and I went to Target (where I walked the whole store without gasping - BEAUTIFUL!) and then met Caroline, Brian and Moo for lunch at El Caporal. It was very yummy and I was actually able to eat quite a bit which was a nice change. Tonight Aunt Pam, Jerry, Aunt Lois, and Uncle Don are all coming over to watch the X game - Let's hope it's a great game!!

This weekend's Kelly's dance competition so we'll all be busy with that. It'll be nice to be able to go to one and cheer her on :D I'll be sure to update about all of that later on.

HAPPY SPRING!!

Blog Changes

Yes, I like changing things around on my blog... just wanted to let everyone know that I have changed things around again. :)

Enjoying Home

I'm back home in Cincinnati for a few weeks until I go back for another surveillance bronch. For right now the family and I are just enjoying being home.

I got the results back from the 1st bronch and showed slight rejection. My nurse said that it's completely normal and laughed saying if I didn't show any they would think I'm weird. We did a 3 day Solumedrol burst followed by a 3 week prednisone taper back to my normal dose.

All the aches and pains are getting better. The worst part of all of the side effects have been the tremors and my hair's thinning a little. Nothing too horrible and I've been told that within 6 months things should stabilize. Plus, if this is what I have to go through to breathe.... totally worth it!

Oh, and the blood clot thing. They think it's from all of the lines I've had placed over the years. My clotting times have always been fine and I've never had any swelling so no one ever thought anything of clots. After my arm swelled so bad (which is now back to normal - YAY!!) they searched and found several clots. I'm just on coumadin now until a few days before procedures and then switching to lovenox until after the procedure then back to coumadin. And it's only for 3 months they're thinking.

Now comes the fun part of regaining muscles... who knew staying in bed for a week would set me back so much in the physical department :D But that's all that going on here. I plan on taking my demon of a dog for walks this week to enjoy the hopefully nice weather. Plus some blood work, a trip to the angel lady (Karen Vaske) and my first visit at the Coumadin clinic. Busy, but easy week :) Hope all's well with everyone else!! It's just good to be home!

Monday Evening-Surprise!!!!

Hi everyone!
Amazing day! I got to the hospital this morning and the nurse had already told Jennifer that she was being discharged today. The Dr. on the floor came in and said that they were discussing Jennifer in the meeting and said she could go home, but didn't say home, as in hotel, or home, home as in West Chester.
We made a few jokes about it but continued to sit in the room. It was 1:30 and I had not eaten lunch, so decided to go down to the cafeteria to see what special foods they had for today. As I left the wing that Jennifer was in, I ran into KeLynn, the nurse coordinator for the post-transplant and she said we were going home to West Chester. I love that lady! lol She is actually a lovely person and I really do like her, but was thrilled that we were going home. I went downstairs to call Danny, my brother, to let him know that he shouldn't rent a car to come to Cleveland, since we were on our way home! He was in Columbus delivering a load, so told him I would swing by to let him see Jennifer and of course, I wanted to see him too. We spent about 45 minutes to an hour with him, he checked my oil in the car and noticed I was 2 1/2 quarts low. Of course, I got the look over his glasses, like "I thought I taught you better than this" look and said we needed to get oil.

We went to buy oil, we visited for a while and then he had to move down the road to get another load for S. Carolina. We followed him to I-71 and got on the expressway and headed to West Chester. We arrived a little before 9, turning the corner down our street and the whole neighborhood was standing in our driveway all the way into the street. How awesome. I stopped the car at the corner, just shocked, Jennifer and I sat in the car, crying! What an amazing group of friends we have!!!!
There were posters, smiles, hugs and congratulations from everyone.
Jennifer came into the house, afraid to be outside too long. I of course, stood outside talking to everyone and just enjoying everyone being outside and the amazing group of friends and support we have.
So, we've made it back home and so happy to be here. Jack has snubbed Jennifer, but sure he will get over it. Sam has acted like a puppy, turning and running, but can't see. Kelly was crying and excited that we were home, all together again and Ray was just doing his thing, content that we are all home.
We have an appointment on March 24, so she will go back, where they will do the angiogram and not sure if another bronch is part of this or not, but another visit to Dr. Budev. I'm sure that Jennifer and I will sleep well in our own beds tonight. We are beyond thrilled to be home, especially in this wonderful neighborhood with all the wonderful friends that we have. It was truly a moment that we will never forget! And we're HOME!!!!!!
Love to all!
Becky and Jennifer

Lazy Sundays

It's been rainy all day here in Cleveland - perfect nap weather. Cameron and Daddy left about mid-afternoon and Mom and I hung out in my room working on craft things that we brought. She has a tablecloth she's embroidering and I have an angel cross-stitch that has taken over 4 years to complete. Wouldn't want to rush into things :)

Nothing major to report on with health things right now... finally! My INR (international normalized ratio - measures clotting time) is a little low to come off the IV heparin but they aren't sure what to do right now. Whether to increase the Coumadin or to leave things be so that I would be able to have the angio tomorrow. Dr. Hogan and Dr. Yun both came by today and agreed that it would be better to hold off on the angio right now. There's no hurry, it's just a confirmation that the BAR is working. They are pretty sure it is because they keep saying my recovery has been remarkable - tee hee :) Also my Creatine (measures kidney function) has been creeping up. They aren't worried about it and said actually my function is going in this tidal wave. The ideal number is 1.0 and mine is 1.5 - hopefully as my body gets use to all of the meds things will settle. So with this increase in my creatine, they are even more inclined to hold off on the angio since the dye is filtered through the kidneys.

Right now we're just waiting on the biopsy results to come back and for the selection committee to discuss when I can come home finally. Mom and I are so horribly homesick right now. We talk about our dogs and our comfy couch a lot :) This Friday will mark 4 weeks since I've been here. As much as we love this town, it's about time to get out of here!! Oh well, it's in God's time, right?

Saturday Night

Dr. Yun came in this afternoon and drained 600cc of fluid off her left lung. Her said the right lung had a small amount of fluid, but wasn't impressive, so he said it was less than before and would eventually absorb into her body. When he numbed her back, that was the part that didn't feel good. We've asked her if she could breathe better, but she said she couldn't tell the difference. The Dr. said that she has done remarkable with the transplant and was impressed. He said that the reason behind the fluid was that when they do the BAR process, they cut through lymphatic system and the extra fluid wouldn't be re-absorbed.
We went outside on the 9th floor and walked around. The sun even came out for the time we were up there. Cameron took pictures of her and her daddy and then her alone. She hates having her pictures taken, but obliged us with a few. lol
I did ask the nurse why she was running a slight fever and she said that it was because she wouldn't get out of bed, so therefore, that is why we walked around. I know she is glad the tapping of the lung is done and over with. She loves her Dr., but really dreaded having the draining process done. He was planning on scheduling the angiogram either Monday or Tuesday and she should be released from the hospital on Wed. Not sure when we see Dr. Budev again, she did say that she would stop by while she was in the hospital. Im sure we need an office visit before getting our walking papers though. So overall, not a bad day. Would rather have nothing going wrong, but this is ok.

Becky and Jennifer

Saturday

Jennifer is tired today and running a little bit of a temperature. The surgeon is coming in to tap her left lung today, but had to wait 3 hours after the heperin had been stopped. Not sure what the temp. is about, just a little bit, but would rather her not have one at all. Ray is on his way up and should be here within 30 minutes. Cameron came up last night, slept on the pull out here in her room. Kelly is at dance until 4 this afternoon, so she won't be able to come up this weekend. She wants me home, but I just don't want to leave right now, until I'm comfortable with her being here with Ray. Other than that, just a slow day. The weather is warm, 60 degrees, but cloudy and sprinkling, so a good day to sleep. I will post when we have new information. Thanks for everyone posting! It makes me laugh and know that everyone is still here with us!
Love to all!
Becky and Jennifer

Friday Afternoon

The bronch is over and she's sleeping. She keeps waking up, asking how it went and wants to see the pictures of the bronch. She keeps saying her new lungs are so pink compared to the old ones being a grayish color. The Dr. said that it all went well and it would take three days for the biopsy report to come back to show if there is any rejection. Hopefully, that isn't an issue.
I think he said that her heperin level is good so he can switch her to the cumadin pills later today or tomorrow. That was faster than the original 5 days we were told.
I had talked to Lois last night and found out that there were clotting issues on the Buescher side, told the Dr. and he said that still was ok. Not the issue with Jennifer, but would run the tests to see if she had the same thing with the clotting factor, but still not related to how they are treating the clots here. They said her clots were because of the iv's they had done. Jennifer brought up the point that they don't use heperin to flush the iv's and wondered if that was part of the issue. Good point, but I forgot to ask the Dr. Hopefully, he will be back in and we can bring that up.
She looks great and says she feels like she's sleeping off a hangover. Not sure how she would know that! hehehe
That's all the news I have, so thought I would pass the word along to everyone and will post again when we have something different.
Love to all!
Becky

Thursday afternoon

The Dr's. came in this afternoon and said they have re-scheduled the bronch for 10am tomorrow. They ran and ultrasound on her legs, but there are not clots there, so that is good. I also need to correct what I wrote last night. She doesn't have a clot in the coroided artery, but the jugular.
They won't get the results back from the clotting tests until probably sometime mid next week.
They will start her on cumaden for at least 3-6 months, unless it comes back that she needs it because of the clotting and then she will be on it for life.
They will check levels on the cumaden and then let her leave the hospital after a day or so.
We always have to have things exciting, don't we? lol
Love to all!
Becky

Thursday

They canceled the bronch because someone else needed an emergency bronch. I guess they will re-schedule for tomorrow, but the Dr's. haven't come in to tell us anything. They have sent her to vascular maybe for another ultrasound. She was able to eat, so I ran downstairs to get her food and when I came back, she was gone. Will let everyone know what the plan is when they come in to talk to us. Her left arm does look better though, the swelling is significantly less.
Becky

Wednesday Evening-A bump in the road

Well, we started out late this morning. We were supposed to have bloodwork done at 7:30 and didn't get there until 7:45. Then on to x-ray, pulmonary function tests and then Dr. Budev. We finally made the Dr. appt. an hour later, went through all her meds with the nurse coordinator, let them know her issues she wanted answers to and was getting ready for the Dr. to come in. She came in and said that her xray showed that she had fluid on both lungs, so they wanted an ultrasound of the lungs to show just how much fluid was there. Then also wanted another ultrasound on her right arm, because it was swelling again. She said go have those done and then come back and she would see Jennifer. So we did the ultrasound on her arms first. They wanted on both arms and found that there were new blood clots in both arms now along with the corroided artery, so they called Dr. Budev, who decided to go ahead with the ultrasound on the lungs but would have Jennifer admitted back into the hospital and treat everything. She is still scheduled for the bronchoscopy tomorrow, but it will be 2:00 (ish). They will decide if they need to tap into the lungs and drain the fluid off when they do the bronch. The blood clots, they are doing a heperin iv to make sure the clots don't get any larger and said that the body would absorb them eventually. I certainly hope so. Her magnesium is down, so they are doing a bag of that, iv, and changing the dosage of the anti-rejection drugs to stronger, since the level they watch for in the bloodwork is low. Lots of little tweaking going on.
I am personally very disappointed that we aren't coming home this weekend, but so glad that they caught it now and can take care of this while we're here. I trust Dr. Budev very much and so does Jennifer. She will be in the hospital for a couple days and then will let her come back to the hotel and not sure when we will be allowed to come home. Jennifer is ok with this and that's the important part. The Dr. said that the transplant process is going "excellent", so we'll take that. Hopefully, tomorrow will be wonderful with the bronch and see no other problems and can get the clots under control. They are also checking her clotting through bloodwork, so I feel they are doing everything great and on top of things. Keep her in your prayers!
Love to all!
Becky and Jennifer

Tuesday Afternoon

Hi everyone! We really are getting pretty boring here, so that's why there aren't any new posts. Jennifer's blood pressure is running high, so we have a call into the post transplant dept., they are checking with Dr Budev to see what they want to do. The high blood pressure is probably because of the drugs she is on, so assuming that they will put her on meds. They asked if we were monitoring her salt intake, but reminded them she was a cystic fibrosis patient and needed her salt and she agreed.
We go to see the Dr. and do xrays and bloodwork tomorrow at 7:30, but should be done by 10 or so. That will be our first venture out. Jennifer feels guilty because we haven't been out walking, but it's freezing here. She keeps sending me out for food and waits patiently.
She seems to not be feeling the prednisone as much either. I thought that would make her eat mucho food, but she hasn't too much. She did eat well on Sunday, but then her sugar ran high because she had a milkshake. We will find a happy medium soon, I hope. We will post more tomorrow after we talk with the Dr. She's always so upbeat, it will be good to get reassurance that we are doing what we should be and she is doing fine.
Love to all!
Becky and Jennifer

Sunday Evening

Well, Jennifer and I are sitting here alone. Very quiet, compared to the weekend we just had. Ray and Kelly left, then Cameron, then Adrianne and Sherri, then Michelle, girlfriends of Jennifer's. We have switched rooms also. The suite we were in was so cold near the door and kitchen and hotter than blazes in the upstairs, so we switched to a studio room. It felt much better when we came in, but as the day as turned into night, it's cold too. I think it's just Cleveland though. That's ok. Still one of my favorite towns now! hehehe
Jennifer and I have caught up on phone calls to people we have promised to call and I have played this game on her computer that I am completely addicted to.
Now Jennifer is sleeping, trying to catch up on some long needed rest. She is doing well, breathing better than I can't even remember when, and smiles every time someone talks to her about going through the transplant and how much color she has. She isn't hardly coughing and that is a brand new thing for us. I think I cough more than she ever did. lol
So tonight, just a quiet evening, resting,watching tv and trying to get the thermostat on a good temperature.
Love to all!
Becky and Jennifer

Saturday

Well, we're here in the hotel and Friday was just the day we needed to catch up on much needed sleep and rest. Jennifer sat on the computer, catching up on other cf friends, watching tv, eating, and doing all her new drugs. She truly has this down. She has her cell phone alarm set for the times she has to take her meds. I was a little worried about her blood pressure when we checked on Thursday night, but showed more normal yesterday. That is a side effect of one of the drugs she is on. Hopefully, things will even out and no more high blood pressures.
Cameron made it here last night first. He was so excited to see her and she was him. Ray and Kelly came in after. Ray went straight to Jennifer and by-passed me. Typical! lol Kelly came in and I was so excited to see her! I was tormenting her, smelling her hair, but was just to have her here and all of us in one place, even though it's just for the weekend. Ray finally came back to tell me hello. I know he's worried about his baby, and I certainly understand. It's hard for him to leave and not being able to see her every night.
Jennifer wanted Chinese for dinner last night and had shrimp mango and crab rangoons. She ate all but one of the crab rangoons and most of her dinner. It's so good to see her like to eat again, not just because she has to.
We have a home care nurse coming between 12 aand 1 today to just make sure she's doing ok.
After that 2 girlfiends have driven up here to visit, so I think Ray, Kelly and I will leave and go somewhere to give them time to visit. I need Kelly time too. hehehe
Jennifer has an appt with the pulmonologist on Wed. We have to be there at 7:30 for bloodwork, I think an xray and then the visit to Dr. Budev. On Thursday, is the bronch. where they will take a biopsy to make sure she isn't in rejection. Im sure that day will be a rough one. Even if she is in rejection, they can up the steriods or put her on a couple days of iv's and hopefully stop that, so that will be nice. I hope things are going well and we can go home. If not, then we will stay another week or so. Time will tell!
Love to all!
Becky and Jennifer

Thursday Evening

Jennifer was finally released from the hospital today! yeah!!!! The fluid is still in the bottom of the lungs, but the Dr's. feel that her body will absorb the fluid once it realizes it shouldn't be there. We are staying at a Residence Inn, south of Cleveland. We have a suite, but had to go up 2 flights of stairs, which was questionable, but Jennifer did ok, with a rest at the landing of the first flight.
I walked beside her, holding her waist and hips, but stopped when she wanted to. We finally made it into the room. It is so nice! Has a living area with tv, gas fireplace, kitchen with table and 4 chairs, frig., stove, dishwasher and microwave. The bedroom on the main floor is where Jennifer will stay. it has a bathroom off the bedroom., and then a bedroom upstairs in the loft with a bathroom there also. There's tv's in each bedroom and living room, with a pull out bed in the couch. The people here are so nice. The manager knows that Jennifer is a lung transplant patient from Cleveland Clinic. She said her twin sister had 3 pacemakers placed from there over the years and she said that is the reason that her sister is alive today. They have said they will clean the room however we want, either with bleach or natural products. It was fine the way it is. Just so nice to see that people really care and are willing to do whatever need be, for another person.
Teresa came up yesterday and stayed and lead us to the hotel this afternoon. She said I was a slow driver. I told her the bumps didn't do well with Jennifer so had to drive slower. We are usually racing on the expressway with each other, so I'm sure she was wondering what happened to me. lol Especially after being in the rear on the way up on Friday, the 13th, heading to get the transplant. She never caught up, but was close!
Jennifer seems ok being out of the hospital, but know she is somewhat afraid. We sat and sorted through her pills tonight before dinner, did her blood pressure, spirometer, but haven't weighed her. The blood pressure cuff runs on 4 AA batteries, but that wasn't told to us. Fortunately, I had the batteries for that, but the scale runs on a 9 volt, so I have to go out for that.
The home care nurse is scheduled to visit here on Saturday, unless they have a cancellation and then she will come on Friday.
This journey is so incredible! Jennifer's not ready to run any marathons yet, but is improving
each day. Her legs are weak, but that will improve with the walking and doing a little exercise. There's very few times I've been speechless in my life, but am in such awe over how well she has done and how intelligent and caring the people are at Cleveland Clinic. We couldn't have asked for better care!
Ray, Cameron, and some of Jennifer's girlfriends are coming up this weekend to visit with her. That will be nice for her. I hope that Kelly comes also. It would be so nice to be a family again, if only for the weekend. She is a typical teenager though and not sure what her social calendar has on it. She wants me to come home this weekend, but still new for all of us with Jennifer being out of the hospital and just don't feel overly comfortable leaving her yet. Things will be back to somewhat a normal life again soon.
We will update everyone after a night of good rest!
Love to all!
Becky and Jennifer

Wednesday Afternoon

Ok, so Im packed for the most part and Jennifer wanted to have her hair washed before we left. They don't have a shower chair or anything to sit on, so we used the room chair. I took the shower head and washed her hair and conditioned it. I looked down and my feet and the bottom part of my jeans are completely soaked. I wanted to moved to the other side, so I could finish rinsing, but slipped and she was splashed in the face. (It really was an accident lol)
Anyway, after doing that, the Dr. on the floor came in and said she had some bad news. She was looking at the floor afraid to tell me, but said we can't let you go today and I see you're already packed, but there is a little fluid on the bottom of the right lung, so they want her to stay overnight and be rechecked tomorrow with an x-ray again. If it's still there, they will probably drain the fluid and then maybe discharge her. I can take this news and was fine. Jennifer was fine also. She said at least they found it before we left, which is true.
They've always said we will have bumps in the road and we are prepared for them. If this is a bump, we can certainly accept this, after all, not so horrible. Now if it was going home to West Chester, we may feel different. lol
So, not the day we wanted, but we're ok for another night in the hospital. I feel good they are monitoring her this close and know she is relieved also.
We'll let you know when things change.
Love to all!
Becky and Jennifer

Tuesday morning

Well, we made it through the bronchoscopy with flying colors! They said it looks wonderful. Yeah!!!!!! She slept all day yesterday, but had been up most of the night worrying about the bronch, so i'm glad she slept. I thought about getting into the chocolates. She couldn't stop me, right? lol Just kdding.
The Dr. on the floor came in this morning and told her she was doing well, her blood count is back up, the potassium is in normal range (it was high) and the kidney function is going back down.
We haven't seen the pulmonologists today, but they are planning on releasing Jennifer probably tomorrow. she still has to have an angiogram, so they said they will try to schedule in the morning and then release her in the afternoon as long as everything goes well.
Then she will see Dr. Budev, the pulmonary transplant Dr., in a week, so next Wed. or Thurs., have a bronchoscopy where they will do a biopsy of the new lungs, and if that looks well, they will release her to go home to West Chester by that Friday. It could possibly be the next Friday, which is ok too. As long as she's ok, I don't want to rush things. We are both looking forward to being home with Ray, Kelly and Cameron though. Back to a normal family life, only much better!!!!!
They keep giving her percocet for pain management, but it knocks her out, they want her to walk....doesn't mix. We will walk this afternoon though, maybe after lunch. She ordered Rascals pizza last night. Had half an Italian hoagie, so still has the other half and a salad left to eat, but did well. They have lost her menu she made out for today's food, so she's not happy about that. After all, the prednisone is kicking in. My arm might start looking good to her. lol
Her weight is still climbing. Hoping it's actual good weight gain. They said it's not ALL fluid, so I know at least she weighs more than she did. She is close to high school weight and that was great.
The Infectious disease Dr. came in and is deciding what to do about her coming in on antibiotics pre-transplant. Whether she needs to continue or not, but said it really is more the donors lungs than hers at this point. We will get an answer on that sometime before leaving, Im assuming.
She is so happy to be able to breathe normally. Just to see the smile on her face, the color back in her cheeks and the pink in her nails! What more could a mother ask for?
We love reading everyone's comments. It sure makes us smile and know how much she is loved, so keep them coming.
We can't get on facebook at the hospital, because the have a block on that here, so don't think we're ignoring you. We will hopefully be able to get on when we get to our residence in Cleveland after hospital dismissal.
Love to all!
Becky

Full Weekend

So the results from the arm ultrasound are back... I have an old blood clot in my elbow, but since it's old and I've had major surgery, they aren't going to treat it. The only treatment they would give would have been blood thinners.... and that's just not going to work. They said not to worry because old clots are tough things which more or less just cling to the wall of the vein and don't do anything. That's the good part of ultrasound. The bad part... I had to go for an ultrasound of my legs looking for new and active clots. They took me down early Saturday morning. When I got to the table I started to cough a little.

I'm still learning the way these new lungs work. And there was a little mucous in the lungs... so I figure, no big deal, right? Nope... huge deal. These lungs don't like the share. I was able to move he secretion, but couldn't get it out. In fact, I did worse... I moved it higher in the airway so I couldn't breathe in. I was terrified. They almost had to call a code blue (pulmonary distress/emergency) but a doc was walking by. What a blessing because it was Saturday morning :) No one works at a hospital on the weekend! I was finally able to move things on my own and have been better moving the gunk, but man.... I knew this wasn't going to be easy, but I never thought I'd be that scared from coughing after surgery!! Great news though... no clots in my legs!

Lois and Don came and I got to spend some time with them, which was nice! They brought be a couple boxes of chocolate which I have yet to open because I don't want to have to share with my Mom... I don't know if many of you know this, but she has a major sweet tooth!!

Teresa, Ron and Trent also came and that was so much fun. I went for walks while they were both here and my second walk was that much better!!! I made it up to the 9th floor and was able to look around the Cleveland from the windows. It was wonderful! I also got some of the best news ever today....

I should be discharged from the hospital within the week. Thursday most likely.... could possibly be Wednesday. Then, I have a week or 2 here for all sorts of lab work and education followed by HOME! In about 3 weeks I should be back in Cincinnati! WOO HOO!! Let the partying begin :)

Friday Evening

Hi everyone. This has been a busy day, so we haven't had time to do any postings. They took Jennifer down for an ultrasound of her left arm. It's still very swollen, more than the right one, so they wanted to check for any additional blood clots. That was this morning, the pulmonologist team came in and said there were old clots there,(they are assuming it is from the many picc lines she has had, but no new ones, so that was a good thing. I had asked if there was an old one, could it break away and cause issues for her. They've reassured us that it won't. they were talking about doing heparin shots for 6 months just to keep things from being a problem, but after consulting the surgeon and going to pathology to discuss with the Dr. the old lungs, they are only doing the shots until she gets up and really starts moving. They found blood in the old lungs, but thought it was because she would cough up blood on occasion and it was probably left from the last time she was sick. They are doing an ultrasound on her leg in the morning, just to double check and make sure things are good.
She's doing very well today, getting up and going to the bathroom on her own, sitting in the recliner to eat her food. She said she's very thirsty but we're assuming it's because of being on lasix an draining all the fluid off her body. She's not eating a lot, but think it's more an issue of swallowing and it hurting in her chest, than it is the food itself. She is also very tired today, but every time she gets into bed to sleep, someone comes in. Just like a hospital, isn't it? lol
We're looking forward to our visitors this weekend. Ray is bringing my car back, Lois and Don are coming and then bringing Ray back home and Teresa, Ron and Trent are coming, provided there isn't a lot of snow.
Teresa and Joe sent me a cooler stocked with beer, water and diet mountain dew, and then a storage box of snacks, everything imaginable. I'll be as big as the house when I get home, but at least happy! lol
Hope everyone has a good weekend and we will post again as soon as we have new info.
Love to all!
Becky

It's me :)

Mom said I should write... so I'm going to try to give a little of my perspective here.

My hands are swollen like little microwaved marshmellows, I bruise so easy and can be knocked off balance by a sneeze from someone else. All of this should return back to normal soon. I'm hoping as I start walking the halls more that I'll slowly regain my strength.

My pain is like wearing a really bad bra that I can't take off. My skin feels very tight where the incision is on my sternum and also where the 2 top remaining chest tubes are. They bottom 2 tubes have been removed and I have two stitches instead.

We've had communication issues on the floor here, but the overall care is good. If people would just do as I asked, life would be good :) Hope all is well back home. I miss you all and we'll have to have a big 'ol party when I get back!! Love you!

Thursday Afternoon

We finally have met the surgeon that did Jennifer's lung transplant, Dr. Merthy and Dr. Yan, whom we have seen every day since the surgery. Dr. Merthy was standing here talking and we asked about possibly getting pictures of her lungs. He said maybe pathology would have some. He made a comment that her lungs looked like Friday the 13th, the movie. He said they were filled with infection and had to be very careful taking them out of her, so there wasn't anything spilled into her body. Then he said that there was a blood clot on top of the heart in one of the arteries that was getting ready to go into her old lungs. He said that when they took the suction out, it was there, with scar tissue over it, showing it was old and probably from her old port. It was at least the size of a quarter or larger. He said that would have caused a major problem. Yeah, I'm sure it would have and glad it didn't. Just such a scary thought. Apparently, the transplant was none too soon.
They have removed the 2 peripheral iv's from her hands and have accessed her port, they are planning on removing the catheter at midnight tonight and hopefully she can pee on her own when she gets up in the morning. They have changed the blake tube containers to little balls, similar to the home pumps she used to do her iv's in. She is overall feeling much better. The fluid is draining well from the right side of the blake tube, the fluid in her body seems like it is going down, other than the left hand and arm. They are going to do an ultrasound to see if there is any other clot that would be in the arm or on that side of her body. The Dr. had said they will do a bronch and angiogram before she leaves and is thinking sometime early next week. They are putting her on more solid food, but so far that hasn't been changed by the Dr. because she keeps getting liquids. I think that is from the resident. She didn't know how to order emla cream to access her port, so it took her 4 hours, until Ray and I went out there and stood at the desk, spelling the cream for her and finally it came up. I guess I will have to spell S O L I D also. hehehe She is eating a cinnamon and raisin bagel and drinking a sprite and that has been good.
That's all the news I have for now. I hope there isn't anything else relating to a blood clot the next time. she is supposed to walk but no one has come in to try to help her. I guess I'll find someone for that also. Ray and Cameron left today for home. They should be home by 6. I think he needs some normalcy and I know Kelly does.

New Picture

Here's a new picture for everyone. She's sitting up!

Wednesday Evening

Jennifer has had a pretty good day. Nothing like last night with the pain. She made a comment today about how swollen she is. She said she looked like a "pink peep". Quite the character.
She is actually as I sit typing, having a massage for her neck and back. The massage therapist is actually rubbing her feet, (which if anyone knows Jennifer at all) that's funny. She hates anyone touching her feet, but was willing to try it to stop the archness in her back and neck. She has eaten jello, drank broth, iced tea and lemon ice and cranberry juice. She said that they all tasted good, better than ice chips. I don't know, but she probably won't be quite as picky with her food anymore, since she hasn't eaten in almost a week. I think anything will taste good. she wanted fries and a coke from McDonalds yesterday, but thought maybe that wouldn't be a wise move. Good call, don't you think? We were sitting here right around 6 or so, and Jennifer noticed that her gown was becoming wet Jennifer thought that it was her chest tube that had come loose, I thought it may have been her catheter leaking. I called the nurse, but there were 3 emergencies on the floor, so we really weren't top priority. The nurse finally came in, looking a little frazzled They had to send a couple patients back to icu. she checked Jennifer, who was right about it being her chest tube. It had come apart at the connection that laid on her stomach and was leaking. So the nurse came in, put it back together, taped it and went back to the other crisis'. Overall, if that's all we have to deal with today, it was a pretty good day. Im thinking in the next day or so, you'll have Jennifer writing on her blog again. It will be nice to hear firsthand from her again. We have been so blessed with family and friends that have prayed and been concerned for Jennifer. I can never tell you what it has meant to us! Thank you from the bottom of all our hearts!
Ray, Becky, Jennifer, Kelly and Cameron

Wednesday-a calmer day

Today seems to be a better day than yesterday. Jennifer has a tray of jello, juice, hot tea and broth in front of her. She ate some of the jello and drank a little of the juice, but asked her dad to bring her a small iced tea from the cafeteria. she would rather have cold tea than hot, so didn't think that would be a big deal, if that's what she wants. She's back on the oxygen, but watching her breathe as she is sleeping, and doing much better, taking bigger, deeper breaths. That helps us as much as it helps her. They gave her morphine last night in addition to the pain pump, so hopefully that will be a big help. They think they can get her a recliner also, so know that will help when they get her up to sit up. They only have 5 recliners on the floor and I guess once you get one, you don't want to let it out of the room. There is a patient that is leaving at 1 today from the floor, so the PCA said she knew she could get one, just didn't know exactly when. That's good enough for me!
Please keep the prayers going and comments. Jennifer loves to hear from everyone. She hasn't felt well enough to talk to everyone on the phone, but sure that will change again in a couple of days.
Love to all!
Becky

The pain becomes reality

Tonight's not a great night for Jennifer as far as pain goes. The nurse had her up in a chair for about 30 minutes and I think that was a little too long. She is hitting her pain med. button on a regular basis. I just think it's all caught up to her. She's still doing great, just alert and realizing how bad this hurts. Hopefully, in a couple of days things will start to even out. She loves hearing what everyone has said on the comment section. It usually makes her smile. I wanted to get a picture of her sitting in the chair, but she looked at me with the "I don't think so" look, so Cameron wouldn't take it. Maybe in a day or so, we can post more pictures. Talk to everyone soon!
Becky

Well, we have finally moved to a regular room. She is having trouble today with pain. Her body is achy, neck is hurting, you can only imagine. I have read her all the comments from everyone and that put a smile on her face! Now, the healing begins. She still has 2 "blake" tubes, not sure if that's how you spell it, but smaller tubes than chest tubes, but similar. She wants to sit up in a chair and hoping that will help her body to stop hurting. Her arms, hands, and feet are swollen, so think they will give her lasix today and that may help the hurting feeling. We are in J-building, Wing 2 of the 8th floor, room 1. Now if you can figure that out, you're pretty smart! hehehe
She isn't allowed anything that would hold dust in the room. A friend of Jen and Cameron's, Evan, came last night with artificial flowers in a vase and they said she couldn't have them. He brought in the vase though. A whole new thought process! Her telephone # in he room is 216-636-4300. Someone will be with her, so it's ok to call and if she's awake and feeeling ok, I'm sure she'd love to hear from everyone! Thank you for all the continued prayers and concerns! You all will never know how much it means to our entire family!
Love to all!
Becky

Settling In

Jen was moved out of the ICU and is now happily sleeping in a normal (without tons of noises, nurses, and crazy medical stuff happening all around her) room. Everything seems more calm and relaxed, and she seems to be much more comfortable.

I'm probably thinking all of this because we have finally exited the mayhem of the ICU.

I have a feeling that Jen may be the one posting from here on out, so thank you again and forever for your support and prayers. Your comments and responses did wonders.

Standing Tall (sitting sleepy)

Jen is now out of bed and is sitting up in a chair. She's alert, but sleepy and nodding off frequently. She had two more chest tubes removed, and while I wasn't in the room for it, Jen said that it didn't hurt as bad as she thought it would. There are only two smaller drainage tubes remaining and from what I understand those will stay in for a while. The docs would like to move her from the ICU today to a regular room, so we're waiting for a room to open up and for her to become stable enough to move. Overall things are going great. we'll keep you posted. Thanks again for all your responses and prayers.

Transplant (With A Smile)

We are all thrilled that Jen is off the ventilator. She's awake and talking and says she feels good. We are catching her up on all the things that have happened while she was asleep. She as always more concerned with our comfort than hers. We just finished eating dinner and we're headed back to continue visiting with her. We just thought you'd like to see her.

The ventilator is out!!!!!

We let Jennifer rest because she was getting so anxious about the tube in her throat. She has a very sensitive gag reflex and it was really beginning to show! She fell asleep for an hour or so and then the nurse woke her up to start the whole process over again with removing the ventilator. Ray had gone back and was with her and I decided to walk back to check on her. She was awake and started gagging and thought she was throwing up. I went to get the nurse, the therapist came along with the Dr. that assisted in the surgery and they noticed that she had an air leak in the tube, plus the tube was larger than should have been, but used it for the bronch they performed. Anyway, they pulled it and put her on oxygen and she's smiling and trying to talk, but she can only whisper for now. She's actually very happy, like the rest of us. Another hurdle accomplished!!!!!

Jennifer and the vent

Hi everyone! It was a long day yesterday. We all took turns going back to see Jennifer, talking to her, holding her hand, rubbing her hair, you know all the things that probably irritate the hell out of her! lol She is doing wonderful! The color is coming back into her face, which helps me and everyone else that sees her. We hardly slept at all Friday night and Sat. morning. Then was ready to get a hotel room, take a shower and lay down for a little bit, when the Drs had come in and then decided to try taking her off the vent. That's certainly not the normal that soon, but the medical people all said she was doing so well, they were going to try. They backed the pain and sedative drugs down and she started becoming a little more alert. She was breathing fairly well, but the more she came off the drugs, the more "panicky" she became. She has this huge vent tube down her throat and has to control her breathing through this tube. We were coaching her, telling her to calm down, breathe slowly, etc. She was doing well but the panic set in and I think she had a full blown panic attack, so they started her sedative and pain med. back up, started back up on the vent with the air and it made her go back into a deeper sleep.
That was excruciating to watch as parents. Afterwards, we left, once we realized she was ok and sleeping and went to get a hotel, take a shower, get some food and then check back with her again before we finally said goodnight. Cameron slept in the icu waiting room, wanting to be neaar her. Ray of course, had to come back and check one more time before he could relax and sleep.
Today, we were in there visiting and once again, they are backing down the meds and trying to get her off the vent. They want to take this slow, reminding us we're not in a hurry, which I so know, and then said they were taking 2 chest tubes out and the iv in her neck. That was great news! They decided if we would agree, for us not to be in there when they are trying to get her off the vent. They said it's hard on the family to watch, which is SO true!
So, were in the waiting room, waiting......
Becky

We went to see Jennifer in recovery. She looked pale still, the nurse said that was very normal. She was breathing normal, instead of the short belly breathing. That was so cool to see. They have her on a paralytic so she can't move and pull the ventilator out, but she was moving her legs and arms and nodded when I spoke to her. She didn't open her eyes though. As soon as I told her she was ok and doing great, she would quit moving. The nurse said that they would have her use a c-pap and if she did ok with that, they would take her off the ventilator, starting sometime after 6pm or so. That was her worst feer, waking up on the ventilator. Hopefully things will move along at a good speed and she can start to recover. I will let you know when we have some new information.

Becky

In recovery

The receptionist called from the icu and said that Jennifer is back, they are cleaning her up and we could call in 30 minutes to come back and see her. She said she looked great! I love those encouraging words!

When the Dr. called and spoke to Ray he said there are 3 things to be concerned about. The bleeding, oozing, fear of rejection and her body has been through alot, so how strong she is to fight and heal. She is a fighter, so hopefully things will go smoothly for her. She sure has a cheering section all over the United States!!!!

We will continue to update once we have a chance to see her. Thanks for the continued prayers! That has gotten us this far and she still has a long road ahead.

Becky (Jennifer's mom)

Still in the OR

It's about 2:30am. Jen is still in the OR, but we heard from the DR about 30 mins ago, and he said he was finishing up the transplant. I'm sure he'll want to talk with us after it's finished to give us the run down on how everything went. I'll keep everyone posted.

Jen is in the OR, the wait is over, the wait begins

This is Cameron, Jen's boyfriend. The waiting is over. She got the call for lungs around 11:30am. I drove back from work and Ray (Dad) did as well. We met Caroline (neighbor) and Teresa (aunt) and her Mom at the house and left. Our friend, Michelle, met us on the way up, and her sister, Kelly, is also came. They allowed us to drive instead of flying which gave everyone a little more time to breathe. She sent out a text message to some of her friends, and apparently one of the numbers was wrong. A guy messaged her back asking who she was. After she figured out she had the wrong number, he said she sounded cute and asked her how old she was. She replied that she was married. We laughed about that all day. After a long (mileage) and quick (speed) trip to Cleveland, Jen was admitted to the OR at 7:30pm. We found out the lungs were in good shape about an hour ago, and we were with her waiting until she left for the surgery. She was in EXCELLENT spirits, cracking jokes with whole time. Minutes before she left she had a typical bout of coughing, looked at her Dad and said, "It's ok, I'm going to go cough up a lung now." She will be in surgery for the next 8-12 hours. If I get any updates throughout the surgery, I'll post them here.

IVs yet again

Just a quick little blip about what's going on at home right now.

Most of our nerves have settled since "the call," but we still jump a bit when the phone rings.

I've gone back on IV antibiotics. My cough was incredibly croupy and I overall just wasn't feeling well. I also have been using my O2 more, but that was something Dr. Budev had told me to do anyway. Being on IVs will not change my chances of receiving my transplant. If the lungs are available, I still get them. What it does change is my post-op care. They want to make sure that I'm on the drugs afterward to make sure I'm clear of infection. While I'll have new lungs, I still keep some of my old airways. Sinuses, throat, and a small portion of the bronchi. They all still have CF and the mucous that comes with it... don't want those things ruining those beautiful lungs I'm about to receive :D

I'm as ready as I'm going to be for all of this... so if it's going to happen, it needs to happen soon!


Oh, and update on Garren - He's doing great, is now able to eat and is down to 2 chest tubes. He has a slight upper respiratory infection so they're waiting on that to clear. He should be able to go home on Friday or Monday though. I can't wait for this little man to start living life!

And That's What We Call A "Dry Run"

Ok, so not really a TRUE dry-run, but close.

It's 3am Saturday, February 7th. Just a couple of hours ago I got the call that I've wished for/dreaded. Mike from Cleveland called... sheesh! I picked up the phone, saw the caller ID and immediately sat down. I was all ready to yell at whoever was calling. In hindsight, I'm glad I didn't pick up the phone yelling :) I'm guessing so was he, haha!

He said he had lungs and was 97% sure that they were going to be mine. He'd run a bunch of tests and it was a great match. There were a few tests left and he'd do those while I got my things together. Time wasn't an issue for this pair and he told us he was going to have us drive up. It made things a little more easy going. I said a little... it was still chaotic! I went to wake Mom up and then decided I desperately needed a shower. Poor Kelly stood in her room and stared at her bed saying "I just don't know what to do!" - She's had a tough few days, but she did get her driver's license today (AAAAAAHHHHHHHHHH!!!!!! So SCARY!!!) And then I called Cameron to tell him to come back over so we could all drive together.

I got in the shower and washed my hair and shaved my legs - 2 things that should have been done a while ago - and a million things passed through my head. It's amazing what you think of in times like this. "I still need to return that DVD from Christmas" "I haven't finished my cross-stitch yet!" "It's too early, I still need more time to prepare" "I wonder if Dr. Budev got all of my paperwork from the fax" "But I have a dentist appointment Monday" "Guess I won't have to call Dr. Trapnell about IVs on Monday".... and the list goes on. I sat in the bathtub and said a quick prayer and placed everything in God's hands. As I tried to figure out what clothes I was going to wear, Cleveland called back. The lungs weren't good enough. Apparently Cleveland is INCREDIBLY picky about accepting lungs, and I couldn't be happier for it. They called me back before I had too much time invested in the anxiety. We had made a few phone calls. A couple aunts and my neighbor. So Mom sat and called them all back, letting them know it just isn't time yet.

Caroline came over and sat with us for a while. It was a while before any of our heart rates had returned to some "non-stroke" range of normal. Finally my eyes are getting heavy again, my body tired, and it is time for me to lay here and attempt to get sleep.

Garren

Garren is a young boy with CF. 7 years old to be specific. For being so young, this kid has been through more than I have. For a while now he's been having some serious trouble and last July he was listed for a double lung transplant.

For children, the allocation system is different. It's the old system. The crappy system. I think I heard it best when someone referred to it as the delicatessen system. Take your number and wait. Complete garbage if you ask me. Don't we all deserve to get lungs when we need them the most?! Luckily, this boy did.

As of 2:30AM February 2nd, he has new lungs. And as of tonight, he's already gone on 3 small walks on the unit. Granted, one of those walks was only 50 feet, but seriously, the lungs have been in there for less than 24 hours!

I'm writing this to ask whoever is reading this to please say a prayer for him and his family tonight. That his recovery continue to be as speedy and smooth. Also, to pray for his donor's family. For as great as it is that Garren has received his second chance... we all know what has to happen. God Bless you G-Man, you are quite the amazing kiddo!

Got Spoons?

So as most of my friends, neighbors and Mom know by now, I've been doing a lot of online reading. Mostly blogs and message boards. Mostly about transplant experiences. I've seen multiple people's scars, learned of their struggles before transplant, wiped tears from my eyes as I read about their recovery, and had this strange mix of jealousy and eagerness as they talk about life after transplant. It's funny, the more I read about it and talk to people... the more I want it.

Even after reading about horrible experiences people have had during their recovery - bad hallucinations, extreme pain, early rejection battles, etc. - I want this. Even if it's just a month of easy breathing... it has to be better than where I'm at. Right now I live a life of waiting on the sidelines. I'm a spectator in my own life and I'm just sick of it. Which brings me to the "Spoon Theory." It's a concept that's been around for a while but was brought back to my attention after reading a fellow CFers blog. She brought her life into the theory and I thought I would do the same. For those not familiar with the theory, check here

For those who are lazy (tee hee), I'll sum it up quick. A girl with Lupus goes out to dinner with a friend who wants to know what it's like to have Lupus. Quickly the girl gathers all of the available spoons in the diner and hands them to her friend. She then explains that everything during the day that the friend did cost the friend a spoon. From showering to getting dressed to walking to her car to eating her dinner or even skipping a meal... each cost a spoon. By the end of the day, the friend was down to one spoon and began to realize that all parts of life is a planned choice.

So on to me. I've noticed over the last few years, the number of spoons that I start with in the morning has slowly declined. For arguments sake, I'm going to assign numbers... but who really knows :) When I was at my healthiest, I think I was about 15 years old. It was before the yeast, before the bad pneumonia which took so much, before I quit seriously dancing. I think at that point in my life I had about 20 spoons. Maybe what happened was instead of borrowing from "tomorrow", I borrowed them from 10 years in the future.... oh well...

But each year took more and more spoons away from me. And these weren't just "spent" spoons, these were "lost" spoons. I think in comparison, I have maybe 10 spoons now. Here's a small peak into a typical day for me...

• I get up in the morning (some days I get dressed, some days I take a shower. You can tell how well I'm feeling by these 2 things alone.), unhook from my machines (BiPAP, tube feeds, turn oxygen off... it's a small production) and I go down stairs. -1 spoon unless I shower and dress, then -3. But on average, it's just -1.
• Now I do a breathing treatment. While I know this helps me, it's one of the hardest things I do of the day. It's a conundrum. I need to cough so that I can clear my lungs and breathe better, but in order to clear them I cough so hard that I can't breathe. -2 spoons for having to prepare and do treatments.
  
• I eat lunch and try to make a decision on what to eat. If I did a good feed at night, I'm not hungry until late in the afternoon. If I did a smaller feed I'm hungrier earlier, but again... another spoon is lost to make the additional meal. It's a balancing act. So most days I don't eat breakfast or if I do, it's a yogurt cup. So there's another spoon. Unless it's a large or heavy meal... then it's -2. and with CF, they're always telling us to eat large and calorie dense food. Great, but the more full I am the harder it is for me to breathe, the larger the meal, the harder for me to finish. So, on average, -2 spoons for eating. I'm down to 5 spoons left and it's only about 3 in the afternoon.
• Sometimes I can take a nap and conserve energy, most of the time I lay around and watch bad TV reruns and wait for dinner. But let's not forget the afternoon breathing treatment. -1 spoon ( it's not as hard as the first one in the morning)
  
• The rest of my family gets home and it's time for dinner. They usually do all of the work - preparing the meal, setting the table, doing the dishes - and I just sit and watch and wait. -1 spoon for dinner.
• Then comes the sitting around the TV, sometimes sitting on the computer, very lazy , relaxing activities which allow me to conserve my energy for the rest of the night.
  
• When I'm tired, but not too tired, I finally make it up the stairs, and prepare my nightly machines. I pour formula for my tube feeding, I put fresh water into my oxygen humidifier, more water goes into my BiPAP machine, do my nightly pills, and my final breathing treatment. - 2 spoons. This leaves me with one spoons for the night... just in case I have a coughing fit in the middle of the night, or a bout of insomnia. Let's not forget the mid-night bathroom run which requires unhooking from my machines and then re-hooking when I get back to bed. Heaven forbid that more than one of those things happen!
  

Just like the girls with Lupus, some days I may wake up feeling good. My chest doesn't feel so heavy, I'm not so congested. I slept great the night before and I have the strength to strap on the O2 and get my butt out into the world of the living. I have "extra" spoons that day that don't cost me spoons from tomorrow. There are other days I wake up and I don't have as many spoons. Those days I don't eat as well and I require a lot more care. I need someone to set up my night machines, I need someone to prepare my meals. But I'm lucky. I don't and WON'T need someone to bathe me or dress me. I may have given up a lot during my transplant journey, but won't sick to the point of being an invalid. I have to keep moving, I need to keep moving. If I can push myself now when I can't breathe, pushing myself when it feels like I've been run over with semi, but taking deep beautiful breaths, should be cake... right?