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.

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!

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!!

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