Holly Jolly Christmas

Christmas was wonderful.  I got to see lots of family and eat lots of food.  What more can you ask for?  We technically didn’t do anything special this year.  We did the same things we always use to do.  I wasn’t able to do them last year so it was super special to me.  We spent Christmas Eve with my family and Christmas with Jay’s.

Holiday Flight

Where has the time gone?  I can’t believe that Christmas Eve is only two days away!   I know that Thanksgiving was a week late giving us one less week to prepare, but damn… I can’t believe how fast it has crept up on me.  I wanted to do so much more than I did.  I wanted to more with the cookies, make something homemade in a jar to give away as gifts, do more decorating and then some.  I think my expectations were a little higher than I could actually do.  Next year I will be prepared.  Haha  Too much is still going on.  I am still healing, and I had the infection.  Good news there is I am definitely better.  My spirometry has gone up from 200 to 250.

On the Road Again

This last week has been pretty busy for Jason and me.  Last Monday we drove to NYC.  I had an appointment on Tuesday and he had two court dates.  After that we headed to Cleveland and then back home.  He then left again to NYC for another court date while I stayed home.  While he was gone I went to my mom’s house to bake some Christmas cookies.  It really has been non-stop this week.

Plenty to Be Thankful For

Hope everyone had a great Thanksgiving!  Mine was great.  It is completely different then last years.  What a difference a year makes.  This is kind of like the same idea I mentioned last thanksgiving.  I was so upset because I did not have Thanksgiving with my family and I was unable to do Black Friday with Jay.  This year I was able to do it all!  I have so much to be thankful for this Thanksgiving and every other day of the year.

Braid My Hair

We finally did it!  Erika and I both got our hair cut and we donated it to Locks of Love.  I have wanted to do this for years and I finally had the length to do it.  I was never able to make the length before because my hair would get too scraggly and I would have to cut it.  I was so mad that my hair starting falling out like it did.  Had that not happened my hair would have been thicker and there would have been more to donate.  Hopefully they can use what I was able to give.  Erika was able to donate a lot.  And she was the one nervous that she wouldn’t have enough!

Doctor! Doctor!

The last couple weeks have been nuts.  Not a day goes by that I am not making at least one phone call that has to do with something medical.  It is either speaking with a pharmacy, health agency or a doctor.  Now that I am feeling well enough I am trying to schedule a whole bunch of doctors’ appointments.  I am playing catch up on a few of them, keeping up with others and obviously going to see my transplant doctors.  Plus I am going to PT, I am not happy with my pharmacy, I am sick, and I am having issues with my hair.  Once I catch up and this Pseudomonas goes away things won’t seem so overwhelming.  Feeling sick like this has got me down a little.  I am not writing about this to complain.  As crazy as things seems to be now, I am OK with crazy.  I am able to keep up with everything that is going on.  I would rather be too busy than too sick to do anything.  This side of transplant is much better than the previous.  I just want everyone to understand that a transplant does not alleviate all medical issues. 

Walking On Sunshine

Quite a bit has happened this last week.  In my last post I told you all that I wasn’t rejecting and my cultures were clean.  Well Monday I got a call from the transplant center.  My cultures came back positive for Pseudomonas.  That nasty bug has reared its ugly head again.  I don’t like Pseudomonas.  Why won’t it just leave me alone!  Anyway not only was that bad news it was horrible timing.  I had plans to leave on a plane at 7:00 am the next morning to go to Naples, Florida.  I was going with my grandma to visit her brother Jim.  I could do the IV meds in Naples, but I didn’t have anything set up in order to do so.  I was determined to still be able to go.  This is when I picked up the phone and started the process.

Can't Fight This Feeling Cont...

Tuesday Jay and I drove to NY.  Before we left I had a nurse come over and access my port. I figured this would be easier than having them put an IV in.  I might as well save my veins while I have this port.  Although we weren’t heading to the city on a good note I was still excited to go.  I was excited that I would be able to see Erika!  I hadn’t seen her since I had left the hospital in August.  I hadn’t had time to meet up with her during any of my other appointments.

Can't Fight This Feeling

The last few days I have been coughing.  I had a few coughs in the morning on Tuesday, but I started noticing it more on Wednesday.  I didn’t think too much of it right away because last Saturday I had a stuffy nose, my ears felt plugged and my whole head just had that congested feeling.  So when I had a couple coughs I assumed it was from all of that. When it didn’t go away by Wednesday I was getting a little worried.  Jason was even more worried.  He immediately said to me, “I think you are rejecting.”  I told him it is probably just a cold or something, but to err on the side of caution I called my doctor.  I talked to the coordinator and we came up with a plan to go to my local CF lung center to get a viral swab.  I immediately called them up and made an appointment for Friday.  It was a good idea I did too because on Thursday it seemed worse.  I was coughing throughout PT and my physical therapist was asking me about it.  On a good note, I am still improving there.  After PT I went for massage and I was able to use my walker and walk in.  The receptionists and my massage therapist were all so excited to see me walking!

Strike it Up

Wednesday I had a neurologist appointment.  I wanted to update him on everything that has happened to me in the last four months.  I haven’t seen him in more than a year.  The last appointment I had, I cancelled because I was too sick to go.  I mostly go to him for follow ups so it was one of the things that got neglected while I was sick.

High on Sunshine

Jay and I just got back home on Friday from a vacation to Florida. We had so much fun. This was my first vacation since camping in August 2012!  I have been so excited about this since Jason brought it up.  I was really looking forward to the Florida warmth, the beach and most of all KELLY!!

Not Settling

The last time I blogged was when I was sick a couple weekends ago.  Well I called that Monday to see what the doctor wanted to do.  Since I was feeling better we decided that it would be fine to go to my originally scheduled appointment.  She still wanted to see an x-ray though.  On the 3rd I got one done locally so they could see it.  A nice thing about this too is we won't have to do it when we go for our appointment.  Anything to make the wait a little less for Joe.

One Day

Wow what a crazy two days.  Not crazy in that a lot happened, but crazy in the up and downs.  I know that living with transplanted lungs I have to be more precautious and diligent about getting sick and such, but when it happens it is like everything else stops.  The only thing on the mind is what do I have and how do we get rid of it now.

Good Times

That last ten days have not been too eventful, but there are a few things to report and talk about.  I want to start by explaining the picture of my fingernail.  The last couple days I have noticed how there is a dip in the nail and how it is growing back straighter.  As you can see in the picture the nail really curves and points down.  Also the side of the nail bed goes back pretty far on my thumb.  I have had clubbing in my nails for as long as I can remember.  Over the last few years however they have gotten significantly worse.  I would see the dip in my nail and the new nail coming in would be even more curved.

Wind Beneath My Wings

Yesterday was Wing Flight of Hope’s big fundraiser.  The title of the blog is the song they use on their website so I thought it would be fitting.  They have a large chicken barbecue every year.  It also included Chinese and Silent Auctions, raffles and more.  There were a few thousand people that showed up to show their support.

Feel Good Inc.

It had been three weeks since I had been there for an appointment.  Last week I went for the bronchoscopy and the week before I was able to skip due to me doing so well.  Yesterday Gram and I headed to an appointment in NYC.  Getting around this time was much easier getting around.  I had no trouble remembering the way to go.  The week before I had been with Dad and he was taking me all over the hospital.  He had no trouble getting from one place to the next.  He was always good with directions.  I was getting better at where I needed to go, but it did help me to have a guide show me.  Lol  After going with him I had it down pat.  Grandma was still a little unsure, but I was confident.

Ho Hey

These last two days have been great!  It feels like things keep getting better.  I continue to get stronger and I am able to do more and more.  Right now I can't keep the smile off of my face because I am loving life so much right now.  I am enjoying everything I am doing and taking it all in.  It has been a while since I have been this happy.  So I will start with yesterday.

Father and Daughter

I went to NYC with my dad for my first outpatient bronchoscopy.  My dad went with me because Jason has just gone back to work and didn’t want to take a day off already.  My dad’s work has gone above and beyond for us.  They said if he needs to take a day off to help me with something all he had to do was tell him.  We decided to drive to this one instead of fly with Wings.  I had no idea how long this procedure was going to take outpatient and I didn’t want to keep the pilot waiting.  So Dad said we would leave after he got out of work on Tuesday.

The Party's Just Begun

I had three parties this weekend three days in a row.  It was a lot of fun seeing everyone.  It was also such a welcome change that I could do it all!  Two months ago I could not do one party let alone three.  It is quite a difference being able to make plans to go somewhere instead of saying, “We will see how I feel that day.”  Being able to jump in a vehicle and go somewhere is awesome too.  I use to bring so much with me when I went anywhere.  I still have that feeling like I am forgetting something whenever I go out.  All I bring with me now is my pill case, hand sanitizer and a mask.

Cruise

This week has been very eventful.  My last blog I talked about getting my staples taken out. I decided to take a picture to show everyone how the incision has come along.  It really has healed so nicely.  It is not sensitive to the touch, but internally it is still sore.  I am able to sleep on my side more and more, but I am not able to sleep on my stomach yet.  Getting in and out of bed is a lot easier since the staples have been removed too.  I still have to be careful when moving into different positions, but it is much easier and smoother.

The Maze

Yesterday was another appointment for NYC.  I have to go to there every week for about ten weeks and then they will be a little less frequent.  Before I talk about the appointment however I will briefly mention last week.

Doing Too Much

I didn’t feel too great on Monday.  I was tired and worn out.  I think I might be trying to do a little more than my body is able to just yet.  I feel fine and I want to go, go, go!  I have been sitting around for too long and there is so much to do.  I have to keep reminding myself that my body is still healing and to take it easy for a little while longer.  I have to at least take more breaks... so that is what I did on Monday.  My brother came over to visit and we had some TV series on my DVR that we had to catch up on.  So all we did was hang out on the couch watch those.  We were both very lazy, but we both really needed it.  He had put a lot of hours into work so he wanted a break himself.    Plus I had a busy day coming up on Tuesday.  It was my first appointment to NYC after my transplant and I had to get up really early the next morning.

Up

My spirometry is up to 1500!  I get stronger everyday and those numbers are getting higher.  The stairs are still hard work, but every day it is getting a little easier.  There are a few things that are giving me a little trouble, but I am working through them.  Rome wasn’t built in one day.  I look at where I was just a little over a month ago and there are no complaints here.  Those oxygen tanks are just some of the things I got to unload recently.  Having those things gone is an amazing feeling all in itself.

Home

I am home!  It feels so good to be here.  I missed my family, my friends and my kitty. Courtney came over when she was done with work.  My family was going to meet me here on Monday too, but we got home too late so they came over on Tuesday and today.  I haven’t seen most of them since right after my transplant.  Everyone is amazed at how different I look.  I look healthy!  It has been awhile since I could say that.

Clarity

Tonight will be my last night here in the hospital.  Jason is on his way here now and tomorrow he will be taking me home.  I have been here for almost a month, but it definitely does not feel like that.  This month really has gone by so fast.  Being out of it for a little over a week sure made it seem like less time, but even the time I was fully aware has really gone by fast.  I am really grateful for everything I have accomplished here at rehab, but I am so ready to go home!  The title is clarity because at PT they had a radio on and without fail this song played every day.

The Climb

Everything is going good and still on track for me to go home on Monday.  My body is healing and recovering beautifully and my breathing continues to get stronger.  I had a little scare Thursday, but it turned out to be nothing.

Radioactive

 So I finally got to see Erika again!  She hasn’t been able to visit me in about a week because she has been sick.  That and this girl is busy so I told her to take a break from visiting me and take care of herself.  The fact that she was sick shows that I wore her out.  I tend to do that to people.  LOL

Knocked Out

These last three days I have done nothing but go to PT and OT, eat and sleep.  We have found that it was probably caused by the steroids.  My doctor told me that some people get hyper on them and others get very tired.  Well it is obvious which side affect I got.  Lol  I was asleep more hours of the day than I was awake.  I would come back from PT, eat lunch and then go back to sleep until OT would wake me up.  There are some times I had a hard time staying awake in PT and OT.  Speaking of PT and OT though, I am making great progress there.

Rehab

This last week has been pretty eventful, but for the most part a good one.  I spent the whole weekend with Erika and Dad and we got to watch some movies.  I have more energy and have recovered completely from the stroke.  I have started rehab and I am on my way to being able to go home.

I Will Survive Cont...

Wednesday July 17th

Both Grandma and I got up pretty early.  Neither one of us slept too well the night before.  I could tell she was tired, but I was doing better.  I was using words correctly, but I was still having a hard time finding them.  I would want to say something and the word would be on the tip of my tongue, but I could not come up with it.  I was also off with the present date.  I really had no idea what year it was.  When Dad got there he went out and got me a doughnut for breakfast.  He brought me back this huge glazed doughnut.  It was so good. Lol  I ended up eating the whole thing and both Grandma and Dad were surprised.  After the doughnut I still ate some of the breakfast that the hospital gave me.  I say some because most of it did not taste that great.  I was trying out what they had and still wasn’t sure what was good and what wasn’t.  Hospital food is far from great, but after trying things I learn what is good and what I should avoid.  The one problem I had from eating the doughnut was my blood sugar.  When the nurse checked it before lunch, it was a little over 400.  A normal blood sugar should not be above 200 after eating.  The Prednisone really affects blood sugar. I am use to being able to eat what I want when I want so this is going to be a learning curve.

I Will Survive

I was moved to floor seven on Monday July 15th and was there for five days.  Although I was better health wise, this was probably the hardest time for me.  I was alert and knew what was going on, but physically I was sore and could not do anything for myself.  I lost any independence that I had and I had to lose my modesty.  I needed help with everything. I knew things would get easier as days went by, so that is what I did.  I went day to day knowing things were already better.  I knew it would be a journey even after I got the lungs. I didn't expect it to be easy.  I got the lungs so there was not much to complain about.

Weak and Confused

This is going to be written in blocks of time, because this is how I remember it.  My mind was a mess through this whole time and I only remember things in chunks.  I will do my best to explain myself to everyone and hopefully you will all be able to follow along.  If not please feel free to ask me anything.

A Second Chance

For me, waiting for the lungs was the excruciating part.  I was completely lost when I got the call...sitting on my bed while Jason was running around crazy.  Then when I was on the plane I could not sleep because my mind was in so many places.  I will admit that I was nervous.  I could feel my heart beating (not as hard as when I realized I was getting the call) and I could not settle down.  I wanted these lungs more than anything at the moment, but I was scared too.

Hanging By a Moment

This whole transplantation has been surreal to me.  Part of me can't believe that this has happened.  I know it has, I feel it has, the breathing is amazing but the like I said, it doesn't feel real.  This is something that we have been talking about for more than a year now, but I was so use to not being able to breathe that part of me didn't know if it would ever chance.

Pittsburgh Evaluation

Last week I spent four days in Pittsburgh, PA for a lung transplant evaluation.  As most of you know, New York wanted me to be double listed because after a year of being on the list, I still have not gotten a call.  My doctor wants to increase my chances of getting lungs sooner so she made this suggestion to me.  NY Presbyterian sent a referral along with some files to University of Pittsburgh Medical Center (UPMC).  After collecting all my medical information and getting insurance approval, I was given an itinerary to come to Pittsburgh.

Deterioration of the Fight or Flight Response

I failed at being able to tolerate the NG tube.  It was my first try though and I am not going to give up on it completely.  I am going to try again tonight to see if I can get it down all the way and tolerate it.  This is a snapshot of one of the attempts.  Here is what happened.

What a Difference a Day Makes

CF Awareness Month is coming to an end.  Thank you to everyone who walked and donated to the CF walk.  And thank you to those who changed their profile pictures to spread the word.  It is all appreciated.  :)  I have wanted to write an update, but I was hoping to get my itinerary from Pittsburgh before I did.  Sadly that still has not happened.  I called earlier this week and found out that they were missing some medical files they needed before they could make all the appointments.  I really wish they would have called me to let me know what the holdup was.  So sorry to say there is no news to report on that front, but there has been other things going on....

Double Shot

The hospital stay went smoothly and I was able to come home last Friday.  I am so grateful I am able to do that because after a little while in there I am ready to get out.  If it wasn't for some of the respiratory therapists, the procedures that go along with them and the food, I wouldn't mind being there as much.  Even if everything was perfect in the hospital, it is still nice to be home.  I am able to sleep in my own bed and be able to actually do things.  I would do the whole thing at home except that first week I really am too sick to do it all by myself.  It is better to let my nurses set everything up with the port and allow them to nurse me back to health those first few days. 

Candles on the Cake

Today is my 27th birthday.  I am still in the hospital, but to everyone's surprise not too upset about it.  It is not where you are, but the people you are with and today many people have made this day special for me....

Thank You for Being a Friend

I am back in the hospital for an exacerbation.  I made it a little longer than last time and this month was a good month.  My coughing has gotten rougher.  I have a lot of unexpected coughing fits that bring me to the verge of passing out, but I am learning to get through those.  I can't complain about this because I had some energy to go out and do things with people the last few weeks.  I did not have this luxury the previous month and it was horrible.  My friends and family have been coming over and taking me out a lot, even if it's for a little while.  It isn't always easy or go smoothly, but I am grateful they all put up with it for me.  And when I am too tired and can't go out they just come over and we have a good time here.

Stronger

I am home, off the IV's and feeling OK for the time being.  There are a few things to catch everyone up on including my hospital stay and my appointment in NYC.

What Doesn't Kill You

I am back in the hospital again.  I came in Friday and should be out next Friday.  Earlier today my Aunt Belinda came and visited me for quite a while.  She brought that adorable teddy and flower arrangement with her.  It was so nice to be able to talk and catch up.  I don't get to see her often so I was very happy she was able to stop today.  Coming in here isn't always all bad.  I decided to come in for a few different reasons.  The most obvious being I was feeling pretty miserable.  To be honest, I never felt good after this last admission.  Ceftazidime doesn't cut it.  It kills the bugs, but the fevers went away for maybe a week.  I never got the increase in energy I get after admissions when on Zosyn.  I have noticed this has been the case for awhile.  My doctors know this, but they have to rotate my antibiotics so the bugs don't get resistant.  It sucks, but it would be worse if Zosyn didn't work anymore.

Wake Me Up When September Ends

I am back in the hospital on IV meds.  I knew it was coming especially because I am following a schedule of two weeks on IV meds, four weeks off, but I am obviously not too happy about it.  I feel like a fish in a fish tank.  Keep going around and around the tank, just continuing to follow the same routine over and over again.  Trapped in the tank unable to go or see anything else.  There is the occasional change, like when the rock is taken out and a boat is put in its place.  The boat is cool, but the rock is missed.  Nothing can be done about this though because I'm a mere fish in a fish tank.  I am not going to have much control of anything until someone comes with a net, scoops me out, and sets me free in the ocean.  I don't know when that day will come, but lately it seems like the fish tank is getting smaller and smaller and I want out.  I am just so tired of everything...