Friday, April 26, 2013
(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!
Thursday, April 18, 2013
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!
Monday, April 15, 2013
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:
Friday, April 12, 2013
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!
Wednesday, April 10, 2013
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!
Tuesday, April 9, 2013
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 :)
Monday, April 8, 2013
Sorry this took so long. I was told yesterday I needed to update because I left people hanging.
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.
Thursday, April 4, 2013
Day 3 was such a breeze in comparison to the first 2 and what I can assume tomorrow will be like. I wasn't so grumpy and I actually had a few smiles!
10:30 Financial Consult
11:00 Nutrition Consult
12:00 Lunch Break
12:45 Manometry & PH Impedance
1:00 Health Psych Consult
The financial consult was only about 10 minutes. The woman who helped us was so on top of things and already had called insurance and had paperwork for us and just knew what she was doing and told us once I am on the list that she will proceed with the next step and we didn't have to worry about it.
The nutrition consult was pretty much the same way but instead of talking insurance she talked about weight and vitamins. I weighed in at 97.3 lbs and am teetering on the border between the 17 and 18% BMI that I need to be at. Luckily she said that since I had a GTube and that I was going to start using it, and since I am so close to the correct weight...it would be easier for them to be able to recommend me and get approved. Nice to hear. She also gave me all the rules about what not to eat post transplant. No buffets. No summer picnics or things where food as been sitting out. East leftovers the next day. But I, being me, asked about eating at Mongo and she said with a few rules that I would be able to have the occasional lunch there. WOO HOO! I was excited that I would be able to eat there once in awhile. With so much changing in my life it was nice to be able to have something like that as a treat. Now to just gain some weight!!
11:45 brought on more labs. 10 more vials of blood drawn and a cup for a sputum culture to do in the morning before I go in. One of the pretty and girlie parts of CF...spitting up nasty stuff to save (yeah that grossed me out just typing it!)
I was so excited when it was 12 because yesterday I was given the OK to pull the tube out of my nose and throat by myself. So Jeremy set an alarm and as soon as it was 12 we found a private bathroom and I quickly pulled that sucker out. RELIEF! My throat was so sore that it was starting to bother me to talk...I think Jeremy was ok with that (KIDDING JER JON) So I didn't need to go to my 12:25 and could have a little longer for lunch. I honestly think that was the best milk and frosted flakes I had ever tasted (Yes I do eat more for lunch but Jeremy took me for a late breakfast and I hate pancakes and coffee then!)
The health pysch was nothing to worry about. I am PRETTY sure I passed with flying colors. They asked the kind of questions like: how often do you drink? Are you anxious about this? How do you feel about having somebody elses organ in your body? But then just had a few tests as well...and I did them all correctly. Jeremy also had to go talk to her and he passed too...guess he isn't crazy :)
My godparents came over from the town near by and took us out to dinner. I scarfed it down and it tasted very good. And through Aunt Pam I got a much needed Mom hug...looking forward to getting a mom and dad hug tomorrow. Every girl still needs there parents.
Day 3 over and only one more to go. Another battle almost over to win the war!
Wednesday, April 3, 2013
I am such a grump...plain and simple...a grump.
9:30 Single View Chest Xray
10:45 Chest CT
11:1 Maxiface CT
11:45 Infectious Disease Clinic
12:45 Manometry and PH Impedance
So the first four are no big deal, they are all xray and CTs. Panorex is an xray of my teeth and the maxiface is more of my sinuses. This is all things I can do and I know I don't have to worry about. I got this :)
Infectious disease went well. It was just talking about post transplant things that I can and can not do in order to prevent getting more infections and therefore rejection. No animals. No yard work. New vacuum with a different filter...either that or I can't be home for an hour after Jeremy vacuums (or both would be best.) Wear a mask so people avoid you. When Laila is sick stay 6 feet away from her and if you HAVE to go close wear a mask then wash wash wash. Just a ton of rules to follow. But he did tell me I should see my ENT to make sure there was nothing starting up there and most likely have to have sinus surgery before transplant. SIGH...wonderful. I also have to get 4 plus immunizations to make sure I can stay as healthy as possible. Just some hoops I was warned about.
Now to the Manometry: YUCK. So I had a tube (and I not kid about this) the size of a cord for your computer was put up my nose and down my throat and into my stomach in order to measure how well my esophagus is working. So I thought I could do this if I just put my mind to it. HAHA well, I gagged and gagged and gagged and my eyes watered, i almost threw up and my throat killed. But after about 20 minutes it was in place and the test could start. PHEW I did the test and the tube was removed...and I guess my esophagus is weak. SAD. I told Jeremy that was one of the worst things I've had to do. I felt like a baby.
PH Impedance was next which is pretty much the same thing. A tube the width of like a coffee stir straw was placed up my nose and down my throat. Luckily the tube is smaller because this one has to stay in for 24 hours (see the lovely picture above of grumpy me.) It is hanging out of my nose and plugged into a little machine that I have to carry around and use as a diary of when I lay down, eat, stop eating, what I eat, when I burp, cough, clear my throat, take pills, drink. So again I say...I'm grumpy. I am counting the hours until noon tomorrow when I can pull it myself. And trust me it will be noon exactly. This is very uncomfortable and there is no way around it. YUCK. GRUMPY.
The good news is that the last one got cancelled so I could leave after this appointment and go eat and relax in my hotel room. (That appointment is now my last one on Friday!)
CF can for sure suck it today. Lets find a cure.
Worst part of the day: The Manometry and the Impedance
Best part of the day: Eating Olive Garden for lunch (even if it was uncomfortable!)
Tuesday, April 2, 2013
I woke up and hated CF so much this morning. Plain and simple and there is no way around it. I wanted to curl up back in bed and not think about it. But then that thought beat everything out, "you gotta do what you gotta do when you gotta do it."
The itinerary for the day:
8:00 Pulmonary Function Test
9:00 6-Minute Walk
9:30 Dental Consult
10:00 Social Work Consult
11:30 Lunch Break
1:30 Health Pysch to fill out paperwork for the next appointment
I just want to say that I wasn't able to eat since 7:15 last night because I had to fast for my labs...and for those of you who know me know I LOVE TO EAT! But thats all I will say about that!
So yes, the day started with Labs and blood being drawn. I am def not scared of a needle so this was no big deal to me. I was fine. I did have to get poked 3 times because they needed to test different things and when all was said and done they took 23 vials of blood. My arm started to go a little numb. It was a ton of blood and it was a little odd to see so many vials filled with your dark red blood. But like I said, poke away because those things I do not fear.
My PFTs went well. They started off at 24% and went up after they gave me my medicine. Now I have started to hate PFTS because now that I don't get as much oxygen and still want to get a good number I have started to get very light headed and feel like I could black out. But again, I fear not the PFTS so bring them on.
The 6 minute walk started out really well but I did dip down to 87% for my o2 which now means I qualify for at home oxygen. This is very, for lack of better words, bittersweet for me. Yes, I will love having it around for when I work my lungs off and need help catching my breathe. Yes, I will love being able to walk farther easier. Yes, I will love knowing it is there for those times I feel like I am suffocating. But, that also means that I AM suffocating enough to need it. That my lungs can't work as well on there own...basically saying that I am getting sicker. A thing I needed to BREATHE about today.
Not too much to say about the dentist. I got a huge thumbs up and he said I have very good teeth. But did say that once transplant is done he would recommend getting my wisdom teeth pulled because they are hard to clean and I don't need them. But come on, not too many people still have those suckers. Its like a badge of honor!
Now for the social work. What can I say about this. Its the time they tell you how you will be on expensive meds for life. And how, as my loved ones affectionately call me, "FAT CASSIE" could return for awhile post transplant. I will be diabetic. I could hallucinate. Jeremy has a huge job ahead of him. Laila may not want to see me in the hospital. You could die. Do you have a support team. Why do I want a transplant. The questions could go on. And SIGH luckily "Hospital Cassie" showed up and I didn't shed a tear hearing all the craziness. I saved those for later. I did sign up to be part of a research study for after so I was excited to be able to be part of that. I can help others out. My SW did say that she would recommend me to the team for a transplant!!!
The health pysch paperwork was what you think it was. 165 questions about what I thought of myself and to see how I am handling life and my illness. We will see on Thursday what they think of that.
Day 1 over and I am just breathing.
Best part of the day: hearing that I my SW would recommend me.
Worst part of the day: Hearing all the scary "you could die" things.
Monday, April 1, 2013
One crazy week is over and the second has just begun.
Laila had an awesome birthday this year!! And it was awesome because it was the first year that she was into her birthday and knew what it was all about...HER! I took her for her first mani/pedi and the little girl was smiling and giggling the whole time, well, in between talking I mean. She got to pick her own colors and even had sparkles put over them. It melts my heart just thinking of how happy she was. Then we took her to get rice at PF Changs and to go shopping at the mall (2 of her fav things) and whenever somebody would talk to her she would smile and say "Its my birthday..." HAHA love it. She was more spoiled than ever and I would have it no other way. With as crazy as her life is going to be I am glad she got to have a day that was all about her and we didn't say no to her requests!!
Easter was nice too. We sang one of my favorite hyms and even though I didn't get to sit with Jeremy because he was working (for those who don't now he is a Pastor!) it was still great to be with Laila (and my mother in law came over too.) We had a very nice dinner with some family and then I had to say goodbye to my sweet little lady for about a week. Because now its time to focus on those words I hate.
I went into pulm rehab this morning and a couple who works out there heard that I was going into my eval tomorrow and stopped to tell me that they were praying for me and that they could tell I am much better since I started working out. I smiled and agreed...yeah it has really built my body up for fighting and yeah I am doing better since my lungs are expanding.
Today I have been just relaxing, re reading everything, making my lists, packing, and trying not to tear up so much. I had a weak moment last night that I just sat and teared up and had to talk to Jeremy and hear his supporting words over again. I think the poor guy needs a medal after all this because his wife has been a mess the last week.
It is becoming real now. Today is the last day before that time is here. My life and the life of my husband and daughter, no matter if I get put on the list right away or not, will be turned sideways after the next 4 days. It will be either waiting by a phone or working hard to fix everything I need to fix to be able to sit wait by the phone.
Its real. The start is here.