skip to main |
skip to sidebar
(This picture cracks me up for a few reasons, including: Laila has a fake smile on her precious little face and also because she had her My Little Ponies totally PHOTO BOMB the picture without me knowing! Love it and her!!)
Today was my last day of Pulm Rehab...and I am gonna kind of miss it. Now let me explain: I will NOT miss getting up and out of the house to work so hard in the morning and I will be glad to get most of my mornings back; but I will miss the fact that I am making my body stronger which means healthier in the long run. But now that the weather is turning nicer, I will be able to walk and bike outside. Plus I may join the gym there so that I can be monitored.
I have been in the mood to clean my house and get rid of all the clutter in my life. So I am very much looking forward to Tues so I can have my arm back, put my oxygen on, and work my little CF butt off. Yes, Tuesday can not come soon enough. It is the day that I have my ENT appointment and I am hoping that he can just look and see what needs to be done, without too many tests. Just say if I need to be cleaned out and schedule it so my name can be on the transplant list sooner.
Now its such an odd thing because I only know how to breathe with these lungs, my lungs. I am not sure how to breathe with somebodys lungs...but anxious to learn how. To take in a deep breath..one that just keeps going and going. WOW its just crazy to think this way!! Anxious! I love my lungs...they have worked so hard and have had the crud beat out of them, yet they just keep fighting so I can breathe. Thanks for all the hard work they have done, now its time for them to retire, they have done their job.
I have crossed off a few more things on my 100 list, but I do need to blog about them. Its been so long since I have blogged out it and people have helped in many ways...I just need to be in HIGH spirits to give it the best attention. And now that the eval is over, and the PICC is almost over, ITS TIME! Sorry to those who have helped me...I do appreciate it and thank you so much!
Today is suppose to be a nice day here in Hartford (its about time!!) so I am keeping this short and go out and live a life without being sick today!
This is just gonna be a short little blog, now that I have had a day to digest it!
THE TRANSPLANT TEAM THINKS I'M A PERFECT CANDIDATE!!
And there aren't too many hoops to jump through. I just have to work on my weight (no biggie),start some immunizations, and go see my ENT (ears nose throat) doctor to make sure everything is ok there. The awesome thing is I already set up appointments for those things last week, so on the 30th I head to Madison again to see the dr.
He is going to be looking and testing for infection in my sinuses and we will see what he says from there. So the transplant team would like to wait until after all this to go on to the next step and enlist me. They want me to be as infection free as possible before the big surgery. So it may mean a minor surgery to clean up some junk...a little battle to win the war.
So many emotions yesterday, from happy tears to scared tears to jumping up and down to just not knowing what to do! So after a few phone calls to people who care...with a happy heart today I get to say I DID IT!
It has been a few crazy weeks, thats for sure. As you all know the evaluation is all over and so far so good with the results. We will hopefully find out more tomorrow.
I am sitting in a comfy chair with comfy clothes on, eating candy, drinking milk and sucking down some good oxygen. Yeap, my O2 showed up today and boy does it feel amazing to get the good stuff into my body again. I mean, it feels so much better than most of you could imagine. I am not sure how I went so long without the help of it. So if you see my around wearing my gear, don't worry I am feeling good and happy to be out walking around and doing the normal things easier again!
For those of you who may have seen it, I went to the ER (in Michigan) this past Friday. My right rib had been hurting so badly that my mom, the nurses in Madison, and yes me too, thought my gallbladder was acting up and I needed to have it removed. Even some people in the ER were pretty sure. PHEW...that was a false alarm. Thanks to Jer Jon for jumping in the car ASAP to be by my side. But they did say that my rib was bruised from gagging so hard on those 2 tubes down my throat during the eval. I guess its kind of a long and painful road to recovery on a bruised rib, but at least I know what it is now.
Tomorrow I go in for another PICC and am very much looking forward to 2 weeks from right now...when I will have the infection on the back burner and oxygen down deep in these beautiful deteriorated lungs of mine. No more headaches, dizziness, hurting eyes, purple nails, or crackling lungs (at least for awhile!)
Looking forward to having life settle down and get back to normal!
Some family pics we got taken while in MI:
The Husbys!
The Zells!
Today I woke up and could really use a tank of oxygen. I can NOT catch my breath for the life of me and all I have done is walked down stairs, made an english muffin, ate it, coughed and now sitting at the table. CF, you are a pain in my everything!
Luckily, I did call my NP to kind of follow up on a few plans, including things I know I need done before the transplant and this Tuesday Jer Jon and I will be headed off to Madison, yet again, to get a PICC placed in my arm. Am I happy about that...no, but happy to start feeling better again so I am not too upset. Then in 2 weeks we will head back for an ENT (ear nose throat) appointment to see if I need to have sinus surgery. Plus get some vaccinations, pull my PICC and maybe even have a port placed. And I get to set up my home oxygen today too (still bittersweet, but with the way I feel this AM I am ready to have a tank to help out.)
Thanks again for all of you have have said prayers, sent thoughts, texts, messages, phone calls...just everything you did to show your support during this crazy time. Jer Jon and I appreciate it more than we will ever be able to fully put into words. And it is so humbling and comforting to know that you will be with us while we head off into this next crazy journey as well!!
Taking a deep breath in order to just, well, breathe!
THIS IS HOW WE CELEBRATED! With everything going on in our Schnister lives, and this kind of being a final piece to the puzzle, we celebrated hard. We got tatted up!
Now the 3 of us have been talking about doing this for over a year and have known what we have wanted for that long too. So this wasn't quite the impulse that one might think. And now I have a piece of these girls with me forever and ever. No matter how homesick I get, no matter where I am in life, no matter what is going on...those 2 girls will be with me always.
We all 3 got the same tattoo on an anchor to symbolize "Faith, Hope, Love" and I am sure it was the perfect choice. I have been with my Schnisters for 28 years, not too many people can say they have those friendships that are seriously A LIFETIME. Well, I can. And how lucky that I can say my sister is one part of that. They have seen me through every step of my life and without fail have supported me and never left me.
To put into the exact words what our friendship is like, or the feelings, the inside jokes, the love, the bond we all share would never work. There are no words. I think I could type a story our our lives together and it would never end nor would it really explain. If one of us would ever leave, the other 2 wouldn't know how to be. So doing this together just seems right.
It was one of those moments that I will remember forever (and not just because I have a tattoo that will last forever!) Thanks to my girls for helping me get a step closer to crossing off something else on my list, and making memories that will last!
So I was too impatient to wait for a call from Kelly today so I ended up calling her. And, SIGH, I am sooooo glad that I did.
She was working on my paperwork as I called her, so it was nice to be able to have her have it so fresh in her brain and get an honest, whatever she was thinking, opinion. I will not drag this blog on long, or make it dramatic. Because lets be honest, the last week was full of drama!
In a sentence (and quote from her), "I think you are a perfect candidate for a transplant. Its people like you that we do this for, and do so well afterwards." Well, you can all guess what I did as she was saying this, bawled like a little girl. The tears were so automatic, it was crazy. So she said that she was proud of everything I have done, to get on the few things I need to do, and that she would go to the team next week and see what they say. So lets just hope they all agree with what Kelly had to say.
I am on such a high right now. So you will have to watch the blog later to see how me and my Schnisters are celebrating....we talk our celebrations pretty serious :)
Sorry this took so long. I was told yesterday I needed to update because I left people hanging.
Todays Itinerary:
8:30 EKG
9:00 ECHO
10:00 Lung Perfusion Scan
11:00 Right Heart Catherterization
The EKG and Echo really was first come first serve. So I was called into my Echo first. It was ok, nothing to it but lay on your side while they find your heart with an ultrasound. But since my ribs had been so sore it wasn't fun to get pushed around and jabbed with the machine. But it lasted about a 1/2 hour and I was off to my EKG.
It was about 9:30 when I finally got to register for my EKG and they didn't call me into until 10 (which of course made me cry because it meant I was late for my next appointment, which meant the possibility of being late for the heart cath as well...that and to tell you the truth I was so tired and drained at this point and hadn't eaten yet, that I would have cried if a person breathed on me wrong!) But they called me in around 10:15 and I was hooked up to about 7 wires for 5 minutes and it was that simple. No biggie!
I feel I need to tell you what the lung perfusion is, because I had no idea until now. They give you an IV and inject you with some radioactive dye so that they can get a great picture of your lungs from all different angles, and it measures them much better. PLEASE measure them well, so I can get the right size when its my time. So now I have 1 IV in my arm for the day, and I am off to the heart cath.
I will save you all the tears I had, drama that was there, waiting period while I was there, and loopy Cassie stories so that you don't get bored reading this update! The heart cath went really well itself. They luckily didn't have to go through the groin area and just put another IV into the other crook of the arm and accessed it from that. But Jeremy and I did have to wait 3 hours until it was my turn. So I was sitting there, with out any article of clothing (besides socks) under this short hospital gown, an IV in the crook of each arm, hadn't had food or anything to drink, and just wanting in to be done so I could get in the car. But, my name was called and the procedure went well. Recovering was quick and I got to pig out on food and entertain Jer Jon the entire time.
Kelly our coordinator will call on tomorrow to tell us how things look so far and tell me if there is any big hoops I need to jump through that she can see so far. Then the following Tuesday she will call us again and give us word on whether I "passed" or not.
This was by far one of the hardest things I have ever gone through. Ever. The stress level and emotions that went through my body were unreal. It took a toll that now I am slowly regaining through hugs, family time, good laughs and chocolate shakes. Thanks to all of you who where there with my this entire time. Sending love and thought, prayers, texts, cards. Just thank you.
I DID IT. I SURVIVED.
