Tuesday, April 7, 2015
I hope that everybody had a great Easter. We had a relaxing one filled with jammies, steak, and peeps in our yard. Yeap, we got peeped. Ha, its actually pretty funny...Laila loved it! Church services where very nice, and it was great to sing in choir. Jeremy had sunrise service so during festival I was up and down the stairs so I could sit with the family.
I had a doctors appointment yesterday and it was probably the best yet. I once again blew all numbers out of the water. Jeremy actually laughed as I dusted my shoulder off on the way back from PFTs. 116%...so as I brag once again, my lungs are probably better than yours. My oxygen was 100% my entire 6 minute walk, which I managed to step over 2,000 steps. My XRay was clear. My weight could probably get better, but nothing was said. The only thing is that my BP is still a little high so they bumped up my meds again, and may need to add another "agent" to help lower it if this doesn't work. The Dr. pretty much said I was one of the best cases...blush.
My team is finally realizing that even though I am a great case, that I never do things easily...like weird blood in my throat, or asking for a dog, or getting sick on holidays. But, this has pretty much been me since I was a child, just ask my mom, dad or sister. I have great timing. So after a few more questions yesterday Dr. Sonetti smiled and said, "Anything else? You want to travel to a third world country? Live in a dirt house underground?" HA, no...I think I am pretty much done asking to break the rules.
It is April of 2015 and its the first time I have been feeling "healthy" this year. Praise the Lord for giving me all the necessary therapies, meds, team, loved ones to help me fight CF and become a transplant patient. But of course, also for my hero I will never know...my donor. For his/her family for giving my a more than awesome gift.
Transplant isn't easy, the road is difficult, both physically and mentally. I've fought all my life and now, today, I get to breathe a little easier. Relax my stressed out mind and body. I am doing well, very well. I get to clean, run errands, do laundry, pack, bath Laila, and get ready to catch a train to Michigan. And I won't run out of breath, I can do it all and still have energy to entertain my child on the train.
Praise the Lord, for wrapping me in his arms. That tiny prayer I said over and over before transplant, is still being answered.
Tuesday, March 17, 2015
After a little visit and a one night stay they finally told me what they thought was wrong...they weren't sure.
I stayed overnight in order to run tests through the night and figure out what was going on. Nothing showed up in all the tests they did. All they knew was that the antibiotics were working, so they sent some orals home with me and said call if it doesn't get better. It did get better. I am just glad that I am healed up and my lungs never took a huge hit. Praise the Lord!
So, yes, I am doing better but not without getting side affects from the meds. I am so dryed out...like I had blisters on my hand because I was so dry. This winter just wasn't my winter. But again Praise the Lord that I survived it and warmer weather is coming. Windows are opened in our house and the germs are flying out.
This Saturday, Jeremy and I are talking to WELS nurses about our experience and how nurses made those times easier. I am looking forward to this one so much, not just because Jeremy will be there doing most of the talking (we all know I like to talk but I do get nervous) but because I love talking about my nurses. Heck, I named my lungs after 2 of them. Nurses work hard, next time you see one you should just thank them for all the work they do.
These next few months are so busy...so busy. And I am so excited for every part of them. Next week my Mom flys in to help with Laila's birthday party. Thats right everyone, my little turns the big 6 in a few weeks. Oh she is as sweet as ever but she is growing way too fast. But more about that later.
I am working on my 100 list but these things are taking time. I love that I can accomplish things. Where do you all think my sister and I should fly this summer to knock a number off my list?! My goal is to cross off about 10 by the end of the summer, so I guess I should be hitting it harder than I am. One of the easiest ones has really become a hard one...I can not cook Country Fried Steak. For real, it turns out nasty!! But I am still working on it, I have tried it about 6 times now and am so gun shy.
Hope everyone has enjoyed the last few days of nice weather. And I have convinced myself it isn't getting cold anymore...ha!
Friday, February 27, 2015
(TBT to pre transplant fighter...trying to get some motivation here!)
It really does amaze me how sick everyone is this year. I have never seen my family as sick as we have been. And I, like I am sure most of you are, am so sick of it.
I have been to the labs and doctors office (a more local one, my primary dr) a few times this week, my throat has been so swollen and sore that I can barely swallow. All they can tell me is that I don't have strep. UGH! Well, what the heck is it?!
I have been coughing out actual blood clots that are forming anywhere from my sinus to my throat. And its not pretty. I took a picture and showed it to my mom (gross I know but she is like one of the only people I can show who doesn't get totally nastied out) because I needed somebody else who if necessary could tell the doc how bad it looked! Its not pretty guys so when you start to get sick, don't wait too long because it can get bad....fast.
But I am blessed with an awesome team in Madison because they threw me on antibiotics asap so whatever this is would be get put in the hospital and I could feel like a normal person again. After taking only 1000mg my throat is already less sore and not as much blood coming from wherever.
But this brings up the point I have always said for years. The reason I will wait an extra 12 hours in pain instead of going the the ER. Why I would rather drive to Madison to see my doc vs drive to a primary. My doc knows me, knows I know my body, has my charts, knows CF, knows transplant.
I want to put it on record that I am sure all these docs are wonderful on "normal
cases on "normal" people. I would trust them to look at Laila, I would trust them if Jeremy, or any other family member went there. But not for me. Do any of you other sick/chronic disease people feel this way?
Two examples in these few short days that make me frustrated (just two but there were more...)
I tell the nurse taking my vital signs, "My blood pressure is going to be a little high, but thats pretty normal for me right now." Just letting her know since I know, really nothing to question. But she did anyways with an, "You think so?" to which, well, I am not proud but when I dont feel well my patience isn't as high so, I straight looked her with an, "I know so." Ooops may have been a little snarky, because she is doing her job as a nurse. But when I come in and tell you, since its been a battle for over a month now, don't question my like I'm dumb. There is a way to ask without questioning my ability to know my own body.
When you have a disease in which you have to often OFTEN follow and know your body and what feels right or whatever....you learn it very well. I can now after years tell you when I even have a fever of 99. Crazy but you learn how to listen to signs.
The other thing is that the prim doc said he didn't want me to just take antibiotics because they are only saved for situations that need it, and since I was showing negative for strep, not to take any. Its probably just viral. Yes, he is 100% correct and would never argue that if was taking a look at, again, Laila, Jeremy or somebody "normal" but guess what, I am not normal (haha very funny guys...I was only talking health here) and need a little extra attention.
I not only have CF, and a lung transplant, but because of the later I have NO immune system. You need to fix this, make sure its not bacteria. Insert call into my transplant coordinator and BOOM I'm only Levaquin and heading back so I can get more labs done. PHEW.
So here I sit at home fighting yet another illness of some sorts. Coughing out blood, and I can tell you the color red remind me of CF and my fears...of death...and I am done with that for awhile. Hurry up spring and heal me fast meds, I am ready and beyond ready to be that healthy girl in a healthy girl body again!
Thursday, February 12, 2015
Its been over a month and today is the first day that I have said the words out loud, "I think my virus is finally gone." Praising the Lord for that number above.
This was from my spiro this morning. Not only is it my transplant normal, but it is even better. This is the highest number I have ever created on my machine. I just about cried. Not only that but tonights blood pressure was lower (at a whopping 148/88) plus my blood sugar was 75 without taking insulin.
My Tac has been lowered to about half of what it was. So the shakes, and anxiety, and sleepless nights are getting so much better. Which in return will help all of the above issues. This Monday I am getting it checked and as much as I want a normal level, it would be sort of, kind of, nice if it was high a bit because it would mean I coud get it lowered again.
The hard work is really starting to pay off. I am still avoiding big crowded areas, this weekend will be my first time is a large crowd but am so prepared for it. Trying to stay in as much as possible so I feel I haven't see anyone in so long, except Connie who comes over...thanks Friend. I have been walking and running on the treadmill (tonights run was done to Micheal Jacksons PYT...good running song. Yesterday was MMMBop) I lift weights. I listen to my alarm 5 times a day, swallowing a handful of pills. I am training myself to breathe deep from the diaphragm. I am eating better (for the most part...peanutbutter and chocolate covered kettlecorn is ok, right?!) and really just trying to get healthy again.
Now that I am getting back to me, I am hoping that my house can finally get cleaned and organized. Anybody know of somebody really good at doing this?! :)
Another plus is that our family got chosen to be on Family Feud! OH MY WORD!! We tape this summer (not sure when yet) and will let you all know when it airs. Is this crazy or what? I am pretty sure my mother is the most excited person I know, followed closely by Jeremy. Now don't get me wrong, I am excited too, but those two are geeked to the max.
March brings another talk, and this one is one I am excited to be asked to do. We get to talk to a bunch of nurses about our experience in the hospital, how and what we liked that our nurses did. Thanks to all the hard working nurses out there, us chronic patients love what you do!
Sunday, January 25, 2015
I am on the mend! I had a doctors appointment on Friday and things are starting to look like I will make a complete recovery from all of this. All the hard work I have put into myself these past few weeks are showing!
My lung function in up to 112%...only 2% away from where I was. I know that it may not sound like that much, but I only get a 10% change before its not good. I need that 2%, and honestly I want even higher. I am a transplant patient and that has been my major role this month. Everything I do, I think of how it will affect my body.
I go out, but not often and not in large crowded crowds, I for sure am avoiding those the rest of this nasty season. There is just too much out there. People come over, but I screen for health first..."how healthy are you?" It has been a roller coaster and I feel like a brand new baby when in comes to germs. But honestly, I am totally OK with it....for the first time ever.
My chest X-ray looked better, my 6 minute walk was still good, my heart rate normal, temp normal....but oh that blood pressure! Still so high. I have never feared the BP cuff until now, it just gives me anxiety thinking about it. But they are changing my meds in order to (hopefully) lower it back to a good number. Breathe, it will be OK. My Tac (an anti-rejection med) is high too, so this week I have check it 3 times and waiting to hear whether or not I can lower that. This would be, in one word, AWESOME. The lower that med is the better my kidney levels (also on the higher side) will be and better my blood pressure and blood sugars will be. Saying prayers and crossing fingers.
My body really has started to hate me this last week. I shake even more (this can be related to the high Tac level) and there seem like times I can't move off the couch, I get dizzy, and my legs just don't want to work. I am carrying water weight and get a little sore due to that...maybe even a little swollen. Oh the joys of being on so many meds!
Let my clarify that although this seems like I am complaining, I really am not. Yes, I do get super frustrated and annoyed to the point of tears, but I am just glad to be here swallowing all those pills. Living. I will gladly do this transplant life for many many years if it means I am still alive. I have had a few reminders that, yeah, I wouldn't be here today if I hadn't had that call. I know that. I know I would be in heaven without these lungs and pills. Would you complain about that, probably not!?
Thank you all for the many prayers, not just in the last few weeks, but for the last few years. I got my miracle. I have my hero. You can be someones hero too...register to be a donor. You won't need any of the parts when you pass away, but there are so many people fighting to stay alive for those parts. Donate Life.
Monday, January 19, 2015
I have been home from the hospital for over a week and my workload is wonderfully hard. My life is all about being a transplant patient trying to get back to her high standards. It seems as if my alarm on my phone in going off so much, the treadmill and weights are getting more use, my devotion book, regular books, and my house is getting clean. Thanks Prednisone for giving my the energy for all of it.
That evil love of mine: prednisone. Its amazing how much it helps my lungs...crazy amazing. They aren't as tight and I am able to be getting more junk moved around and out of my gift. But nothing is all good. This comes with non stop eating (as a matter of fact I am eating peanut butter/chocolate kettlecorn as I type), a halo of weight, mood swings,high blood pressure, high blood sugar, and very irritated. I am blessed that my husband and child understand. I have been taking 5 minute breaks when I need to sit and breathe and just get my act together. It will all be ok.
I have a doctors appointment this Friday and am hoping things have started to turn around and that massive white blob on my xray has shrank....a lot. NO WHITE! I know my PFTs are higher, but am still working on getting them even higher. I am going to have them check out my arm, sigh I am very nervous I may have another blood clot after being poked way too much in the hospital. Please say an extra prayer that everything is ok there...that it will pass without having to get on blood thinners. I also have to get my blood pressure looked at because my heart is working too hard and my pressure is so high. Never thought I would be a person to have to worry about this.
About 2 hours after I was released from the hospital and happy with my child home from school...she got the stomach bug. She couldn't keep anything down in her tiny tummy. I felt awful. Plus, I was so worried that I would nab that bug along with the metapneumovirus and would end up back in the hospital. My hands are still raw from all the hand washing and sanitizer. Praise the Lord that it didn't spread in this house. SOAPBOX: if you or your child are sick...STAY HOME!! It isn't worth being miserable and spreading the virus to everyone else.
I am still staying away from most crowded crowds and staying in the house. I can't be too safe. Its ok with me, my house is getting kind of clean and organized (slowly) and going out is fun when I go.
Sorry this is an odd blog, but I just knew I needed to update....and I am tired! I just had a little playdate with Connie and we rocked out to some Just Dance and had some girl talk. Hope you all are well and everyone is beating this winter blue with a little extra fun here and there.
Thursday, January 8, 2015
The drama of it all!
I am saying blessings today for sure. I went through all my tests and finally got all the results back, and I am so ok with them.
I tested negative for the flu, they are saying no pneumonia (YES!!!) and nothing else cultured....meaning no bacteria. I have a nasty nasty virus called Metapneumovirus. It is much like RSV, and just needs to run its course. But seeing as I am compromised, due to lack of immune system, I am getting a little bit of help. Help from...(swallows hard)...a large amount of Prednisone.
I take 5 mg of it every morning as part of my anti-rejection med. But now I am taking 20 mg a day. Please, I beg all of you to have a bit of patience with me. My body hates this stuff and I get all those reactions you hear about. You know like I eat everything in front of me, I gain weight, and worse of all....roid rage. If I see you and just wave a polite hi, don't take it to heart. It just means I am raged up and need some space. You can say hi and I will say hi back, its just that I am focusing on not losing it for the little things (like sharing a sharpie with my sister, or Jer beating me in a game.) I, knowing I can be a little, well, MEAN, have been working on my roid reactions and irritability. I'm trying.
I got to get my IV pulled this afternoon, stopping the antibiotics and fluids all together. All my levels are back to normal, happy times. I get to sleep well tonight, I get to itch my arm, I get to wash up! Best yet, I get to go home tomorrow....hold your applause, please HAHA!
I woke up after my first higher dose of meds and I could remember what breathing was like a little more. What a bright face was. How my legs do work. How my voice can be chipper again. Now, don't get me wrong...I still have a road of work ahead of me. I need to exercise, work the lungs, eat, rest, sanitize, wash hands even more, and UGH mask up...trust that pretty much everyone has a bug I can get. Its a good things my home is so cozy :)
Hope you all are surviving this chilly weather!!