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?!

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.....

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 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 :)

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 :)

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