Monday, January 23, 2012

Fears and Peace

My new motto this week is faith and positive thinking.

John 14:27
New International Version (NIV)
27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

After last weeks upside down week of rejection, infection fears I was a little blah. I think I handled it all very well. But the problem I found is that I think I have been focused too much on the idea that things are going to go wrong. The bible version above was on a website that I read and it gave me great pause. The website was about fear and how if we let fear in it will take over our lives and that which we fear will indeed become reality. 

My biggest fear right now is actually going home, to my house to live amongst my things with my husband, as a wife. For nearly eight months I have been away from home, I have not had to maintain a house, or cook, or clean, or be a full time wife. I am not sure how to get mentally prepared but I am going to do my best not to let the fear take over. 

If given the choice today I would stick my head in the sand and let the world wash by and hope that when I come out everything will be beautiful and fine, and what's not so funny is that is exactly what I have been doing for eight months. I have been hiding from the realities and now I have to face them. For those who think marriage is easy, they are mistaken, it takes work, on both parts and it is easy to fall into a game of tit for tat. When so many things seem wrong it's hard to see them right again, how to find your way back to what once brought you ultimate joy.

In my quest toward this new life I have had a hard time focusing on what to do each day, part of it is the medications but some of it has to do with having a new life that allows you to do more but knowing something's must remain the same.

For this week I will try to curb my fears, I will try to find a bit of outward joy each day that I hadn't realized the day before.

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Wednesday, January 18, 2012

What a week!

So to update the world or my part of it today the life of me is ever increasingly changing. 

So my bronch, for those who don't follow me on Carepages, showed up with A3 rejection again. Today I was back at the doctors to discuss this and I have learned a couple or more things. I also have an infection, be it a fungal or bacterial we do not know at this point but are treating it as both along with the infection. Until we get labs back on the secretions they pulled during the bronch, we don't know what we are fighting. We can't do many these rejections too many more, ideally not again as rejections can cause damage. So my maintenance dose of daily prednisone will go back up to ten twice a day, as when we drop below seven I end up with rejection it appears. 

With that said by upping my prednisone we are reducing my ability to fight infection and increasing my chance of the Ebv/Cmv from my donor to rear it's head. Which to jog memories, the Cmv is treatable fairly simply, the Ebv can lead to lymphoma which is treatable with chemotherapy, in any case these to are the lesser a better option than rejection.

So, never great news but always worse possible. I am more worried about my two days of no exercise due to all my time at the clinic and zero night feeds due to all this fasting I have had to do. Whew. My first week since transplant that I wasn't to be at the clinic, I will, by Friday have been there everyday.

I am heading off to bed. And if you happen to be reading this while sitting in the Carribean please enjoy some of that sun for me.

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Monday, January 16, 2012

Monday, Monday!

Just when you think it's safe to go back in the water.

My Monday started out that I was to have an meeting with the director of CE to discuss my coming back to work. Instead I found myself at the clinic, the place I was not suppose to be this week and now I find I will be there in some capacity everyday but Friday. 

I've had this stupid wheezy feeling and something is stuck sort of feeling in my chest for s few days now and last night I decided today I would call in and get an answer. My answer was to have blood drawn, a PFT, a CT, and meet with the doctor, and meeting with the doctor has led to a bronchoscopy on tuesday, another CT, then blood Wednesday and another dr. Appointment on Thursday. Throw in that I will likely end up on iv antibiotics. The bronchoscopy will do a couple things tomorrow as it is also a biopsy, it will tell us whether what they saw on the CT is rejection or not, or infection. I believe they think infection and I hope that's what it is.

What sucks is I just spent the weekend at my house and Chris and I talked about me coming home more frequently as I am not at the clinic as much, and we can start setting things in motion for my arrival, well this throws a wrench in that plan. Welcome to the always unsure, never set in stone life of Sarah Hackenmiller.

So, as I sit here pedaling my bike to no where, I hope and pray tomorrow brings good news, either way I know an iv is in my future and more therapies and drugs. I shall take it in stride as that is what I signed up for with new lungs. One step forward, three back, eventually I will find even ground, or at least good shoes for the journey.

Friday, January 13, 2012

The Week in Review

I was at the doctor this week, as I am every week and each doctor is different and tells me different things. My doctor last week was all excited for me to go back to work, this week my doctor was a little more reserved on the idea. I think I have mentioned Dr. Scott before, he was my CF doctor long before transplant. I have known him for more than 10 years, so he knows my history inside and out, which makes me happy when rotation falls in transplant that he will be my doctor that week. 

So when I told him I needed a letter to go back to work he gave me his usual sideways glance "of really," then proceeds to have me stand up. I have been down this road before, so I knew that I should stand up without using my hands to push off the bench and I did beautifully, then he asked me to stand on one foot, then the other and as I performed these tasks without falling I commented that I was not required to do these things at work. In the end I surprised him with my standing skills and proceeded to tell him I wasn't starting work Monday i was just going in to have the conversation about starting back, and that seemed to make him happy.

I also learned this week that I am type-2 diabetic and now give myself an insulin shot every morning. I thought it would be hard giving myself a shot but it isn't. I am just hoping it makes me feel a bit more energetic and help with the water retention issue. In the end the biggest thing I learned is how this body is extremely complicated and how one thing can effect something else, which effects something else, which effects something else...

On Wednesday I had an infusion of Reclast for my bone density issue, I wasn't thrilled about putting another chemical in my body but in the end I decided for now it is the right thing. Having lost 25% of my bone density while on the vent I needed to do something to stop the progression and Boniva isn't a good option.

The thing about new lungs is they don't come without risk and they do not come with a guarantee. I wake up every morning wondering how I will feel for the day, if I will feel energetic or not, if my pain will be tolerable, or if I will feel something weird or new in my lungs. Ironically it's a lot like my old lungs. New lungs also come with a workout each day, I can't sit back and expect them to make my life better, I have to be in charge of moving and motivating myself. The hardest part is knowing that there is no guarantee from day to day, I only have this moment and even though that is all each of us has, until you live with that knowledge it doesn't become real or weigh on your daily thoughts. 

The other thing I have come to realize is that life isn't all rosy when you get new lungs and you start transitioning back into life. The problems that were problems before still exist, they were just put on hold and on the back burner, where everyone put issues aside and now they return and it makes me so sad. This world is beautiful and full of promise but it is also full of heartache and disappointment and I forgot for awhile about the hard parts. I try each day to stay focused and positive but there are days when I reach the point as I close my eyes that I can, for at last a little while tune out reality and what lies ahead of me.

We've only had three days of winter but I am so ready for spring, or the other winter we were having. I miss the outdoors and I just don't do cold well.

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Sunday, January 8, 2012

Minnesota Winter...Really!

What a way to start a new year with temps that are way beyond beautiful. Today we went to Quarry Hill for some outdoor recreation time, we were actually muddy, well the shoes were and it was fabulous. I am sure somewhere along the line the weather will pay us back, like a mid-July cold snap or something, and I will do my best to not complain when winter actually does arrive apparently later this week.

I was given the okay this week to do two things I haven't done in months, drive and work. Guess which one I am most excited about? I am not going to say, but I will say I am a little nervous about driving, that is a big responsibility and lucky for me neither of our cars is automatic so my legs need to be more ready than anything and I think they are. I wish there would have been some way to track my progress with my legs and muscles along the way. The first time I tried to walk stairs with rehab in the hospital was about ten days after my transplant and I thought I would walk right up, I was wrong and instead I nearly fell flat on my face. Fast forward ten weeks and I walk up from the basement 16 steps without too much thought. I can now get off the floor without too much effort and I can stand on one foot and put on my socks. These simple things we all take for granted are very monumental when at one point they couldn't be done.

Work is a different story. I made a promise to myself that when I go back to work I will take the stairs, I work on the third floor and haven't taken the stairs in years. But I look forward to the challenge. I however am not looking forward to packing my lunch. It's at times like lunch time I wish we had a cafeteria.

We shall see what this week brings. I'll let you know how my first drive goes, probably fall on the first day of snow. I almost forgot my baby got new tires on last winter and she's waiting for me to get back out and give a good burn...or just a leisurely drive.

Saturday, January 7, 2012

It's a New Year

It was brought to my attention that I haven't written since December 16, so for those avid readers I apologize. I guess we could look at it as good, that I have been so busy, things have been stable, and I haven't had much to say. But I will do my best to keep up on this again.

I am now at the clinic only once a week as I am nearing my three months post transplant on January 23. This weeks appointments were uneventful, I am not requiring a transfusion as my hemoglobin has gone up, thankfully, and everything else is stable. Oh the best news was yesterday in the lab I blew an Fev1 of 2.28 that comes out to a 71% lung function, I am very close to what is considered "normal" for lung function, not that I plan or want it to stop raising once I get there. The highest number I ever recall seeing for me goes back to when I was about 18 and that was 83%. let's take a moment of pause and put this whole thing in

Since I have picked up my new hobby of knitting, I have completed five dishcloths and currently have three scarves, one dishcloth, and one afghan in the making. I bought a knitting loom, the loom is much quicker than hand knitting, but I am still using my knitting needles for one of the scarves. Although I should say depending on the type of project you do on the loom, the type of knitted pattern you want, it can take a long time. One of these days I will post my some of my projects, if I can get photos to come up.

I have also been trying to paint, or in this case create a piece of multiple- media art, I reserve judgement on my project right now as I seem to take a fly by the seat of my pants attitude when it comes to creating art the requires paint and other mediums. Not only that but I started the biggest project of my life a couple weeks ago, which I will not share with you what it is at this moment as it is still way too early. Finally I have three books to read, but only one have I started. I seriously do not have enough time in my day to do all these things on top of eating, exercising, and doing my daily maintenance chores, whew. 

Last week I started using my feeding tube again, in hopes to gain some weight. My goal right now is to reach 115 pounds, and when I do then I will be happy to have my peg tube removed. I also told my pregnant friend that I would gain 20-25 pounds right along with her. She gets a new bundle of joy and I get a new wardrobe...not sure who's luckier! 

I hope this new year finds you all doing well and that things go your way this year. I don't know what each new day brings but looks like I am trying to fill it up and make the most of each day, I hope you do the same. As we all know, today is the only day we know we have.

Happy New Year, here's to new adventures!

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