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.
Wednesday, December 17, 2014
Has it really been that long? Guess I need to sneak in a blog post in December, so here I am. The picture you may ask? Thats "The Zell family from Ann Abor, MI!" HAHA....as most of you know my family tried out for Family Feud, and should know soon if we got on the actual show! Helping Mom work on her Cancer Sucks bucket list!
First I will say thanks for everything everyone did for my Lungiversary. It was a good week of spoiling the crud out of my lungs, whatever they wanted they got. I am alive because of my donor, and even though I know nothing about them, they are a person close to my heart. I am still hoping one day that the family will want to read our letters and that they will want to write us back. I pray often about that.
Thanksgiving was nice. After much mulling we decided to hop in the car for a crazy 36 hour trip to the Mitten so we could see family and be thankful with all of them. Good food, good laughs, good company! I brought a sled back that I fell in love with, its outside our house right now with a wreath. So cute, if you drive by check it out. I hunted for that!
Added a neurologist to my list of Doctors to see. He said there is no reason I should be having migraines and wanted me to make sure I don't have a tumor. Well, as most patients who are on tons of meds know...you get side effects and I just happen to get the "migraine side" one. So, right now, I am not going to get the MRI. He gave me some medicine and it has been working so, well, literally haven't had a migraine in 7 days. Since the day I started this medicine. Only down fall...its suppose to make you sleepy but since I have been taking it...I don't fall asleep until about 4. The insomnia was getting better but...WIDE EYED right now. Naps about 8 am come in handy for that!
Shannon and Francesca are still doing great! I had my "one year out" appointment earlier this month. I once again broke my own records and my Doc said I had the highest numbers so far. All I need to do is drink more water and exercise a bit more. And, yes, after the Christmas season, I do plan on getting my body is better shape and using my treadmill more than I do. I want to keep this girls around.
The best news that I smiled and started tearing up about was....drum roll...(ok it may not sound like a big deal to most people who read this, but honestly its huge!)...I don't have to go back to the doctors for 6 months (unless something comes up and I need help with it!) 6 MONTHS!! I have never gone that long since...since forever. I have never done that, I have always had my normal appointments every 3 months since I can remember...and now they say I'm "healthy" enough for the time to double. 6 months. Count them...6!
Now for the not so cool news. The following day I had my bronch and psh it kicked the crud out of me this time. While I was still sleeping they had informed Jeremy that I had infection but everything looked good for a negative rejection. BOO and infection. This was coming off the cusp of a cold I was trying to kick without help, as was doing it well. So my doctor just said I can try to kick this infection off by myself too. Well, that lasted all of 6 hours. SIGH, that evening I started to run a fever over 100 and chills...which are two big NO NOs in transplant land. So I took some Tylenol to relax my body around 4 am so I could sleep. Called the doctor bright and early in the morning to inform them and they gave me the sad news of admission. So, yes, I cried. This was my first December in 4 years I could do everything with my daughter and make it magical for her. I didn't want to spend anytime in the hospital let alone Christmas. So after talking to Jeremy, I convinced them to try oral antibiotics on me first. After awhile Kelly called back and gave me the deal, but would have to call back in 2 days if I was better.
Not much else to report, and, as always, no news is good news!
Tuesday, November 18, 2014
Today is the day! I am 1 year from this very day that this wonderful gift was given to me. A shiny, blinged out, only blows glitter, pair of lungs. I will not even begin to count the number of times I have cried today. I started to count but have already stopped because all the texts, messages, phone calls, cards, posts, well they all make me cry. A wonderful, crazy, mixed emotion sort of cry.
But in honor I thought instead of hearing me write on about how excited I am (that can wait until tomorrow and the week of celebrating) and things that I sort of maybe remember...I decided to hand over my blog for the day. I gave it to the person who was with me from the moment the phone rang to, well, the person who is still by my side. I thought this person needed to write how it all went for him, his feelings. So here we go. Presenting...Jeremy Jon...
I was groggy. We had taken a family nap.
We took a lot of family naps. Cassie was tired all the time. When she wasn’t sleeping, she was on her oxygen more and more—and when she wasn’t, I was telling her that she should be. Even dropping her off at the door for things like Wal*Mart and church (yes, we live across the street) wasn’t working anymore. Those “exciting” outings took too much out of her and she would have to relax, use her oxygen, and, eventually, fall asleep.
A few months earlier we got together with the Husbys at a condo in South Haven. Cassie spent 90 percent of the time in the room, sucking down air. My mom told me afterwards that when the MI Husbys got back to the east side (the RIGHT side) of Michigan, the prayer chains started. They saw what I was seeing every day. Cassie was dying. She was not breathing. She could not keep this up.
So, yeah, Laila and I got to do a lot of things together. And, no, I wouldn’t trade it. I’m positive that having that daddy/daughter time while mommy napped or relaxed is why Laila still has her days where she follows me around and completely ignores anything Cassie does or says. I love it. But, still, there were times, particularly J, but when I do, preaching takes a lot out of me!), where I needed my rest, too. So, Cassie in bed, Laila with her, me on the couch, we took a nap.afternoons (I know I only work one day every three weeks
We were trying to figure out what to have for dinner. It was snowing. I didn’t want to trudge through the snow to start the grill, even though we had steaks thawed in the fridge. That meant a tiring trip to the grocery store. That meant me cooking. That meant me washing the pots and pans and the dishes right away afterwards because I’d have a busyand wouldn’t be able to get to them for a couple days…plus I was out of underwear and undershirts. We decided we’d go out to eat instead. And then it happened. Cassie’s phone rang. She looked. Lungs.
It’s gonna be ok, Cass. Step one, I’ll call Marquardts to see if they can take Laila. I remember trying to explain like 6 or 7 different things to Mike and then realizing I wasn’t making any sense. Can I bring Laila over now? Look back at Laila and Cass. Laila is running around and jumping all over the place. She’s singing about how her mommy is going to be able to run with her. God, I hope so. Don’t cry. Be strong. Go hug your wife. She’s gotta be going crazy.
Ok, Cass has her transplant bags ready. I need to figure out what I am going to wear, knowing that it is cold outside, but I’ll probably be inside for the next three weeks. I just need something comfortable to wear that won’t make me sweat, that I can wear for about the next 36 hours. Stop focusing on this silly problem. Go hug your wife. She’s gotta be going crazy. It’s gonna be ok, Cass. I promise. Jesus promises. It’s gonna be ok. I love you.
Remember your wallet. Remember your phone and your charger. Grab your laptop.
We got in the car. It was snowy. I called my mom. Don’t cry. I called my brothers. Don’t cry. I called my fellow pastors. Don’t forget to drive carefully…
We arrived about 90-100 minutes after we got the call. It usually takes about 90 minutes…but somehow we got packed, took Laila next door, and still got there in the same amount of time.
We got there around. They said surgery was planned for . Yeah, right. Ok, surgery is now planned for . Yeah, right. Ok, at the latest. Yeah, right. They poked and prodded Cassie. Hug her. Tell her everything’s gonna be ok. . Time to go to surgery prep. We went down. Everywhere we went, there was NO ONE around. It looked almost like a Walking Dead hospital. Lights in hallways were only halfway on, if on at all. Went to a prep/waiting room. And boy, did we wait. Alone. No nurses checking in. No Dr. DeOlivera saying everything was ready. No nothing. Just me and Cass. Talking. Silence. Tears. Talking. Tell her everything’s gonna be ok. Smile.
We took silly pictures. We looked at the clock…a lot. Then, finally, around—a nurse! We said good morning and she about jumped out of her crocs! She was just there to weigh herself while no one was watching. She didn’t know anybody was down here. She’d check in to see what was going on.
I made sure they had my cell number. I’ve given them that cell number 20 times. I give it again. To three people. I go get another coffee. And another.
Last time, it was about an hour and a half in when Dr. Maloney came and told me the surgery didn’t happen. I looked around.. Nobody. . Nobody. . My phone rang. Surgery started about 20 minutes ago. What?! It’s actually happening!! Call your parents. Call your inlaws.
Facebook, Twitter, and Email. 7 hours of updating TONS of people (NOT complaining. I was overwhelmed with how many people cared). I counted 70 emails—just from the kids at school. About every 90 minutes I’d get a call. One lung in. One lung in?! They took one lung out and put another one in. How does that work?! More coffee. Second lung in. I cried. I was walking to get an energy drink and I could no longer see where I was going. They put new lungs in my wife. I updated. Constance texted me back. I sat down. I texted back. I was overwhelmed. I couldn’t function. I couldn’t see anything.
Around 3 they called again. They were closing her up. It was successful. I was going to meet with the surgeon and talk about how it went. So I updated and then I went to the waiting room. And then I waited. About, Cassie’s dad said he arrived at the hospital. I met him and we walked together toward the waiting room and, on the way, ran into Dr. D. He smiled. That’s a good sign, right?! The three of us went into the waiting room. He talked. I listened. I tried to process. I tried to think of good questions. Over and over Dr. D said that everything went really, really well, but, we can’t get excited yet. Things WILL go wrong. Be prepared. Stuff WILL happen that is unexpected…expect it anyway. One thing in particular (make a mental note of this, this is gonna be important) that Dr. D is not worried about, but will keep a close eye on, is that she is draining a LOT of dark red thick sticky blood. They’d like it to be a little more translucent…a little more watery and pink. But not worried. Again, set backs WILL happen. My father in law and I, both at about the same time asked the important question…CAN WE SEE HER NOW?
We saw her. We wore gowns and gloves and masks. I told her I loved her. I told her the surgery happened. I told her everything went well. I watched as 4 different nurses were checking 40 different things and realized that the best thing for Cassie right now was for me and Cassie’s dad to be out of the room. We exited.
“You ready for a beer?” What?! Am I ready to drink? My wife just had major surgery and you want me to drink?! And then it made a little more sense. It was time to celebrate. It happened and it went well. Not to mention that, amid all of the coffee and energy drinks, I forgot to get food in my belly too. My tummy started to rumble. I excitedly agreed. We gave my cell number…again…and we left. In the car, we went over everything that Dr. D said with a fine toothed comb. We couldn’t find anything in what he said to worry over…except that she was draining too much dark red thick sticky blood.
I ate. I drank two big beers. My nerves calmed. My adrenaline went back to normal. It was time to, finally, sleep. I got gowned, gloved, and facemasked. I told Cassie I loved her again. I told the nurses my cell number…again…and told them where I would be sleeping. It was. I fell asleep.
Atthe light in the room turned on. “Jeremy?” Check my phone. . No phone calls. 30 emails. I asked the nurse what was up. They had called. They needed to take Cassie back into surgery. There was too much dark red thick sticky blood draining. As we walked back to Cassie’s room, I tried to process what she was saying. They were going to give her a “wash.” They had to open her back up and “wash” through the area to make sure that it would drain the way they wanted it to drain. I was confused, to say the least. They were going to take her in 15 minutes. God, NO! She made it through. Do NOT let her die NOW!! How serious is this procedure? How long will it take? Explain the process again? That didn’t help. This very kind, pretty nurse, for the third time, explained what was going to happen. I still don’t get it!
“Listen, I know you are doing your job, and you’re doing a great job. I just need you to tell me, should I be calling my inlaws to get back here? They are in Lake Mills. Sleeping. Should they be here for this?”
“Well, Jeremy, really that’s up to you.”
“Listen again…uh..well…ok fine….Is my wife going down there to die!?”
So I went back to the room. I chose to let Zells sleep. I opened my bible. I laughed. Someday, picture yourself waiting while your spouse is in major surgery and read the first 90 psalms. It is insane how much of it had a direct correlation to the feelings I was experiencing. I laughed. God knew what he was doing. He is in charge. We should fear, love, and trust in God above ALL things. Never in my life did Luther’s explanation to the 1st Commandment mean so much to me. Trust in him above all my feelings. Trust in him above all the medical jargon. Trust in him above the days and weeks and months of Cassie dying. Trust in him above all things. Recognize his almighty power…power he promises to use for your good. Love him. Love his care and concern. Love his providence. Love him for the fact that no matter what happens in the next 4 hours, you and Cassie (and Laila) will eventually be together forever.
They knocked again around 6. Procedure done. It went so well. Cassie is resting.
I wish you could have seen the difference that I saw between post surgery Cassie and post wash Cassie.
They put a 5th (!!!!!) chest tube in her tiny torso, but out of each one of those tubes was trickling tiny drops of watery, pink drainage.
My wife had an excellent surgeon. She had a superb group of assistants (other docs and nurses). She had a donor family that made a loving, kind, and selfless decision and gave my wife the best present that she could ever receive in a time when their hearts sank in sadness and grief.
Today, November 18th, 2014, my wife woke up and got Laila ready for school. As I’m writing this, she just got back from driving, out in this wonderful 9 degree weather, to get Laila’s favorite lunch from Panera. She’s going to walk over to school and sit with her 5 year old and laugh. And then she’s going to come back home. She’s going to finish up some laundry. She’s going to wash some dishes and tidy up the house a bit. We are going to go out to eat tonight to celebrate. And then,, she’s gonna do much of the same…because she can. Because she can breathe.
1 I will exalt you, O Lord,
for you lifted me out of the depths
and did not let my enemies gloat over me.
2 O Lord my God, I called to you for help
and you healed me.
3 O Lord, you brought me up from the grave;
you spared me from going down into the pit.
4 Sing to the Lord, you saints of his;
praise his holy name.
5 For his anger lasts only a moment,
but his favor lasts a lifetime;
weeping may remain for a night,
but rejoicing comes in the morning.
6 When I felt secure, I said,
“I will never be shaken.”
7 O Lord, when you favored me,
you made my mountain stand firm;
but when you hid your face,
I was dismayed.
8 To you, O Lord, I called;
to the Lord I cried for mercy:
9 “What gain is there in my destruction,
in my going down into the pit?
Will the dust praise you?
Will it proclaim your faithfulness?
10 Hear, O Lord, and be merciful to me;
O Lord, be my help.”
11 You turned my wailing into dancing;
you removed my sackcloth and clothed me with joy,
12 that my heart may sing to you and not be silent.
O Lord my God, I will give you thanks forever.
Tuesday, November 11, 2014
Has it really been that long since I blogged? Well, you can all assume that no news is good news right now. I am still doing very well. I have been keeping myself pretty busy around here.
Cold season is here so I am trying keep it out of my house and out of my lungs. They are still doing blinged out and I am still blowing high numbers on my spiro. My weight is still up, my shakes are still on and off again, and my sleeping is still well, not there. My face still has aged about 20 years over this last year.
Yeap, its been almost a year since I was blessed with the gift of new lungs, oxygen, and new life. Jeremy and I still talk about it at least once a week. This week we talked about how tramatic of a thing we went through. I got to hear the parts that he personally were the worst. I got to tell him what the worst was for me. He wins this round, I slept through most of the scary parts HAHA!
But all month we have things lined up to celebrate, starting with the actual date (Next Tuesday...the 18th) and I am not sure how I am going to make it through everything without tearing up each time. I have said it a million times this month but I will say it a million times again...I am blessed. I got my miracle in a miracle.
I am able to tell my story (was asked to do a talk in Lansing, MI a few weeks ago and now am lined up to talk to a group on Nurses in March) and not cough during it. I can go to Walmart and put the groceries away. I can wake up in middle of the night with Laila and not cough for 3 hours after. I can eat like a normal person and keep weight on easier. I can work. I can travel. I can walk across my house. I can carry Laila. I can laugh with Jeremy. I can keep up with my family. I can live. All those things I can do where as last year at this time I couldn't, I was dying and planning on how to get things accomplished before that time was here.
"I still forget how sick I really am. I wonder if I need to give in more and just decide that this is the life I have right now, dying." This was part of my blog entry on Nov 10 from last year. I look at it now and wonder how I didn't see how sick I was. I was either just that naive/dumb or just that much of a stubborn German who kept up her fight....you can decide for yourself. But either way you decide, I was glad at the time that God made me what I was, because it got me through what I needed to get through.
Thank you again to all those who have so graciously helped me with whatever it was my family needed help with. Whether it was a meal, a good laugh, watching Laila even for that little hour so I could breathe, taking her on her "forever stay", cleaning, gardening, donating to Team Cassie, praying, writing encouraging words, or for even my little penny on a post-it-note. THANK YOU THANK YOU THANK YOU!
Hope you all have a as much of a great month as I am about to have. LET THE CELEBRATING BEGIN!!