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!!
Wednesday, January 7, 2015
But lets all back up...
Christmas was really nice this year, the whole season including the New Year. It was mellow. Jer, Laila and I stayed In Wisconsin for Christmas Day, to be leaving on the 28th to go see family. This planned seemed to be perfect since Jeremy and Laila both had the flu. Rest, liquids, pajamas, eating whatever sounded good, bing watching tv and tons and tons of games were exactly what was needed. Plus we could spread the wealth of the holiday out longer, turkey dinner was the 26th, my birthday the 27th and we would leave the 28th.
My birthday was an entire day of surprises. Like seriously and entire day. From presents at 8 am, to lunch with friends, to Connie taking me everywhere with new friends at each stop, to roller skating, to a trip to the ER for a broken ankle (sorry April, hope you are healing quickly!) I did it all with ease and excitement.
Now to travel to the mitten, the low-key, non-stop trip. We had a blast seeing everyone, laughing, eating, exchanging presents (I was spoiled this year for sure) and even though everything was great and I wouldn't have changed much of it...I started to get run down, caught the MI flu and spiked a major fever. Bummer. So, even though I was in the mitten I called back to my transplant team to see the next step. "Sounds like the flu...lots of rest and liquids." OK, I can do that, I can beat this one my own. Well, that was dashed hard when they called the next morning (Sunday) to say I should get evaluated...and possibly Sunday night in Madison.
Unfortunately, Mother Nature came those past 2 days to both states and the drive was longer than expected so we stopped in Hartford. I woke up shipped Laila off to school and went to the doctors. I brushed my teeth, but thats about it.
The short story is: my normal lung function of 114, is now down to 101. Yes, I am in awe that I went DOWN to 101...but that 13% change is a huge problem, couldn't get my oxygen to 100, 6 minute walk wasn't the norm, and eek that chest xray! My doctor walks in surprised I drove myself, which told me it wasn't good. I was right, that flu settled to a massive bought of pneumonia. PNEUMONIA. I had to be admitted. I had to go home, get bags, shower, and have Jeremy drive me back up.
So here I sit.
I have been here since Monday and still feel all cruddy. They are pumping me full of 3 different antibiotics, liquid in between, treating me for the flu, gave my lungs a bronc "wash", been poked more now than during transplant, testing everything they can on me. But am praying I turn the corner soon.
I want my glittery 114. I was all the oxygen I can have. I want to end the holidays ok I want to be home. I want my lungs to not hurt again. Pneumonia hurts. Little did I know when I kept saying my lower back hurt on my right side, it wasn't that I twisted or slept funny...it was the pneumonia.