Tuesday, October 4, 2016

Fall: Then and Now

I love fall.  I'm not a pumpkin spice girl, but I am a boots girl.  I bought two new pairs this fall because I love boots so much - I have boots in 4 colors now.  So I think I'm set for awhile.

Today I went and put on my leggings and top, and as I was putting on my socks I had a flashback to last fall - which was pretty damn rough.  So I wanted to make a list of things I am thankful for today that weren't possible last year.

I'm thankful that I was able to put my socks on today - all by myself - and then I was able to walk to a different room and put on my boots - all by myself.  All this, while not wearing oxygen.  Last year I had to have Dan help me get dressed and undressed most days because it was too hard to breathe and get dressed at the same time.  

I'm thankful that I can shower on my own - a real shower, in the shower.  Last year Dan was helping me clean up in the bathtub and washing my hair.  But I'm well enough to do it all by myself.

I'm thankful I can make my meals.

I'm thankful Dan can spend the whole day at work without worrying about me falling or calling him because I'm in some desperate need of help.  

I'm thankful for the dancing I've done so far this fall - and hopefully *fingers crossed* there will be a lot more dancing this month!  I love my dance friends, and I'll continue to go and socialize even when I can't dance, but I love dancing.  It means the world to me.

I'm thankful that I had the energy to put up my fall decorations this year - all by myself.  Last year I think my mom and Dan helped me, but I don't remember.  I know I didn't do much decorating for Christmas, but hopefully that will be different this year as well.  

I'm so very thankful that I just had a virus over the weekend and it wasn't my lungs failing me... because I'm not ready to be as sick as I was last fall.  

Wednesday, April 13, 2016


Last Wednesday Dan and I went to a quaint little restaurant for dinner.  We sat down and ordered, and I told Dan I would go to the bathroom and be right back.  I walked to the bathroom and as I pushed open the door this wave of memories hit me. The peacock wallpaper reminded me how hard it was to push the door open and how I couldn't breathe just from trying to walk the 50ish feet from our table to the bathroom.  The memories were from the last time we were there, about December 26th. We were there for brunch that day, and it was a struggle to get me out of the house.  It was a struggle to get me out of the car and into the restaurant.  I had a coughing spell and had to sit down in the front area of the restaurant and catch my breath before I could hobble and gasp my way to where my friends were seated.  Soon after I sat down, I had to go to the bathroom.  Dan offered to walk me there because I was breathing so poorly, but I refused his help because I thought, "if I can't make it to the bathroom on my own, I should be in the hospital."  The door was so hard to push open and everything I did in the bathroom was hard.  Setting my oxygen concentrator down so I could do my business. Picking the oxygen concentrator back up, washing my hands. Opening the door again. Part of me wondered why the hell I bothered. And four days later we would call 911 because my breathing was so labored, and I would spend the first two weeks of January inpatient and wondering if I was going to survive my trip to Hawai'i. 

Fast forward to last Wednesday.  I walked into the restaurant like a normal person - no oxygen, no coughing spell, just me. I walked from our table to the bathroom without getting out of breath, and opening the door was easy. 

All of that is possible because of pulmonary rehab.  I have been exercising my butt off and it's been paying off. I had a check up on Monday and my lung functions are about the same as when I was released from the hospital - and that was the best they had been since August! 

I feel so lucky to be able to get my lung functions up this much, and I'm hoping to get them up a little more. I feel lucky to be doing lost things without oxygen, and to be able to do things like open doors so much more easily. The strength I've been building in rehab really shows. 

Monday, March 28, 2016


It took me EIGHT months, but I got my FEV1 back up to 40%.  I'm being discharged from the hospital today and don't have to do home IVs this time.

Sunday, September 6, 2015

9-6-2015 Health Update

I’m home!  Can you believe it?  Because I’m having a hard time believing it’s real and it could last.  So much has happened in the last few days, I feel writing a giant update on my blog is the best way to update everyone. 

The general background:

After I got a cold around the 4th of July I was hospitalized for 3 weeks.  I came home, not really better, and then got slowly sicker. I was home for 2 weeks, and then I ended up being taken by ambulance to a nearby hospital because my pulse ox was so low and my pulse was so high.  I went home on oxygen.  Less than a week after that, I was back at the hospital in Milwaukee and spent almost 2 weeks there. 
The more specific update and recent details:

On Friday I did my PFTs.  I was POSITIVE they were going to be at least a little better.   On Tuesday my FEV1 was 34%, and on Friday I was hoping for at least a 39%.  My reality was 30%.  My FEV1 went down, of all things.
We’re all baffled.  Dan and I, my parents, and my doctors are sort of stumped as to what the hell is going on with my lungs.  My CT scan of my lungs was fairly clear and looked really good for a pair of CF lungs.  It definitely doesn’t match my numbers, how I feel, or why I’m still on oxygen.  My doctor, Dr. B, came to my hospital room and we had a very long chat about what the plan should be and where we go from here.
First, this all could still be viral.  Dr. B said that sometimes it takes up to 12 weeks for a virus to clear the system of a CFer and since we’ve kicked the shit out of both the MRSA and pseudemonas with so many IV and oral antibiotics, it’s probably time to stop the IVs.  I am on one IV at home to treat a couple little other random bugs that were growing in my last culture.  We’re hoping and praying this is viral and will go away in the next 4-6 weeks and I’ll get better.  I will work my butt off and get better.

My parents and I discussed the mannitol, and then I discussed it with Dr. B.  When my mom started making it for me, I started using it more (almost daily) because I was no longer trying to make my supply last as long as possible.  This coincides with needing prednisone more often, so I’m going to back off on the mannitol and go back to doing it 1-2 times per week.  Hopefully this will reduce some inflammation in my lungs. 

The prednisone could also be causing rebound inflammation now because I’ve been on such a high dose for so long, so we’re going to taper down the prednisone very slowly.  It’s going to take about 2 months for me to get off of the prednisone, which is sad.  I’d really like to sleep better, eat less, and have a slimmer face again.

A VERY exciting thing is I got approval for the new AffloVest – the vest that has no tubes or a box.  It can run on a battery so you can wear it anywhere and you can wear it and be active.   Like, I could be ironing and wear my vest.  I could ride my stationary bike and wear my vest.  I could wear it in the car or on a plane.  It’s very exciting!  I’m going to try to do my new vest 1-2 times per day along with 1-2 manual chest PTs.   The more treatments the better! 

When my new vest arrives next week, the first thing I’m going to do is wear it while I ride my stationary bike.  I’m so excited to do that!  The next key part of our plan is exercise.  I must exercise.   First, to kick my lungs into shape and second to lose weight.  I need to lose 10-15lbs before I’d be eligible for transplant.  I thought that was odd, but it’s what Dr. B said.  I’ll talk about the T word in a minute.

I talked to my psychiatrist and Dr. B and we decided I can go back on the antidepressant I had to stop cold turkey to go on an antibiotic for my lungs.  Dr. B and I don’t feel we’re going to use that antibiotic (Zyvox) all that often, since it was a major culprit in causing the terrible tachycardia, and some other reasons.  So I’ll go back on the PTSD/depression/anxiety med that was working pretty well.  Yay serotonin in my brain!

That’s our basic game plan. Med changes, lots of airway clearance and exercise, and good rest at home.  Do those things and wait and see if I get better. 

Dr. B presented me two (well three) other possible options to try. 

1)      Trying a drug called “cystagon.”
2)      Being part of a clinical trial in Canada where I would receive inhaled nitric oxide.
3)      Transplant

The prescription for the cystagon had already been sent out.  We’re waiting to see if my insurance will approve it, or if they’ll need a lot of paperwork to approve it.  I’m not really sure what the drug does, or why I’ll be taking it -  I clearly need to be reading medical journals instead of typing this -  but Dr. Biller said it might help me, so I’ll try it
The clinical trial in Canada is an interesting option.  I’d love to be part of that.  The hard part will be it will require me to go to Vancouver for about 2 weeks with little to no notice.  And inhaled nitric oxide.  I need to read more about that in cystic fibrosis as well. 

Dr. B brought up transplant.  I’ve talked to her about transplant before, but it’s always been brought up by me because I had a specific question.  Dr. B said that it’s an option, but she “doesn’t think we’re there yet.”  And she told me that I need to lose about 10 pounds because my BMI is a touch too high to qualify for a lung transplant.   Honestly, I’d rather be in this boat than needing to gain weight to qualify for transplant.  I think losing is easier than trying to gain weight when you’re sick - and I’ve been on both ends. 

So that is the update on my physical health.  I’m home, but not well.  I’m still happy to be home and working hard here to get better.  It’s much better for my mental health – which I’m hoping to discuss in a different post soon.  

Wednesday, December 31, 2014

10 Years

I've been wanting to write this post since November, but about that time I put up an item on my etsy store and got overwhelmed with orders.  I've finally found a moment to sit down and write this (despite having about 3 quilts I still need to make), so here it is.

November 17th marked 10 years.  Ten years since I almost died.  Not "almost got hit by a bus" almost died, but "lost half my blood volume and needed emergency surgery" almost died.  I was in my first semester of college and one day on my way to my Intro to Engineering class I had a sharp pain that caused me to double over.  I called my mom and let her know that I had the pain, but I was still going to class.  I went to class, and then I went my chemistry lab.  I informed my TA that I probably had an appendicitis, so if I doubled over in pain or collapsed, they should call an ambulance.  But I really wanted to be there and to complete my lab.  After chem lab I walked back to my dorm basically doubled over in pain the whole way.  I decided to go to the ER.   I took my backpack full of books (because I had a calculus midterm the next day and I needed to study, duh), and hopped on the bus to the ER.  I TOOK THE BUS TO THE ER.  Looking back, I was way too stubborn and dedicated to my studies.

I waited in the ER for a long time, and studied for my midterm while doubled over in pain.  I called my mom and asked her to drive the two hours to where I was going to college.  She arrived as I was being taken to CT. I was so relieved.

This is getting long, so I'm going to make a REALLY long story shorter and focus on the important parts.

A mess of things happened in the ER.  They said I was full of poop and that was causing my pain.  I disagreed.  I pooped all the poop out and the pain wasn't any better.  Mom and I were sent home from the ER around 4 am, We ate from the vending machines.  Cheetos.  Mom slept on the floor of my dorm room.  Once they were open, we went to my CF clinic to get some actual help.  They called a surgical consult and then I was on my way to have my appendix out.

I woke up from surgery and made sure I could still do a triple integral, and then went back to sleep. Because midterms were still incredibly important at this point.  In the morning, a med student woke me. He jabbed my surgical site; I backhanded him. I was given a med I didn't want to take.  My mom fed me some Jell-O, and I fainted.  I wanted more Jell-O but it got spilled when I fainted.  I had no blood pressure. My mom DEMANDED that surgery come see me.  They didn't come for hours. Finally she demanded I be seen by pulmonary, and they demanded that surgery do something,  I was almost dead.  My pupils fixed and dilated. I was in and out of it. I felt a darkness pulling at me and I fought it off. I fought hard. I thought, "My parents, my doctors and I haven't fought my CF this hard for 18 years for me to die from an appendectomy." The darkness faded. I gave my mom a "thumbs up" with all the strength I had, and she began to cry. I was trying to tell her I knew I would be okay. I had a CT that showed a ton of blood in my abdomen. I wanted my mommy to sign the surgical consent form for me, but I had to do it.  I was barely able to lift my arm, but I made an 'x'-like thing on the paper.  I had emergency surgery.

I woke up.  I couldn't remember how to do a triple integral. It didn't matter. A nurse was wiping vomit off my face because I had thrown up in the OR.  I had a garden hose in my nose.  I was panicked.  I thought they had punctured a lung. They hadn't, but my lungs were full and weak. I had three blood transfusions. The rest is a blur.

It was a long time, but when I could finally lift my head and whisper, I said to my mom, "Call. Sarah." My mom had already saved my life, but somehow I knew I would need the support of my childhood best friend.

I didn't fully recover for 8 months.  I tried to go back to college and my classes about a week after my surgeries.  I'm going to blame that decision on complete determination to not let anything medical derail my college dream and the brain damage I had from lack of blood.

I did have brain damage.  I was lucky I was young so I recovered.  I had problems following conversations, and figuring out puns.  Fast TV shows confused me and wore me out.  I once told my mom, "I feel like I'm a Monet painting.  From far away I look pretty and put together, but once you get up close I'm fuzzy and messed up."

My mom literally saved my life during this ordeal, and she nursed me back to health in the following months.  I was so sick for a while my parents couldn't leave me alone.  They had to go to a closing a couple hours away, and if I remember correctly, they had my brother stay home from school to babysit me.  He might have had a day off, but I know Darin babysat me - his older sister.

Socially, recovery was hard. My college friends were amazing.  I had only met them months before, but they were so supportive and wonderful.  One friend took me to the doctor, they all came to check on me in my dorm room, and they would go to the grocery store with me so I could get the milk I needed to keep my weight up.  When I was at school I did better, but I was honestly too sick to be away from home, so I went home.

Home was a disaster.  What few friends I had in my hometown were away at school, and one friend in particular was awful to me.  I thought she was my best friend, and the first time she came to visit after my surgery she brought her new best friend to meet me.  I was so weak I couldn't follow their conversation and when they left I just cried. We had an ugly parting of ways, and I didn't know if I was going to be well enough to go back and be with my new amazing friends at college.

The only person in my hometown who came to visit me more than once after I got home was Sarah.  Whenever she was home over that holiday season she would come visit.  She was wonderful.  If I just wanted to rest she would just sit with me.  She took me to visit my favorite teachers - even our favorite elementary school teachers.  She invited me to go sledding, and when I was too weak to walk back up the hill she told me to sit on the sled and she pulled me up the hill and suggested we just go home and watch a movie.  She was, and is, the best.

My mom saved my life physically, but I was really depressed after my surgery - I had brain damage and was so weak and frustrated.  I lost the person I thought was my best friend, but my TRUE best friend showed her colors and pulled me out of my funk.  She gave me a reason to keep fighting every day.  I had to fight very hard, but she helped me see it was completely worth it and I was loved.

Right about this time ten years ago Sarah took me sledding.  She pulled me up the hill and helped pull through the toughest time in my life.  I am forever grateful for her.

I could never thank my family and Sarah enough for getting me through that ordeal.  I owe them my life and all the happiness and joy I have experienced since.  I love them all infinitely.  I am infinitely grateful.  As awful as everything that happened was, it brought me and Sarah back together and gave me perspective on how short and wonderful life is - and I gained that wisdom much earlier than I probably would otherwise.  And I am grateful.

I can't believe it's been 10 years.

Friday, August 29, 2014

My Life Story, Abridged

I'm really tired of this dance I have to do with my CF clinic.  I don't know what else to say, other than that.  My parents and I have always had to dance with the CF clinics in one way or another.  My best CF clinic was the pediatric clinic at UW Madison, but eventually we had to dance with them too.

I'm just so fed up and annoyed because being sick is hard, and then dealing with doctors and clinics is hard.  I would rather just do things on my own and not deal with doctors at times, because they and their staff make my life more difficult.

This is the story of my two week dance (thus-far) with my current clinic:

Last Tuesday I called CF clinic because they had never scheduled my follow-up appointment from my hospital stay and it has been a month.  I requested to do PFTs locally and go from there.  I got a call on Wed. saying my doc is out of town, but the NP would like to see me in clinic. I don't really like her because she's been rude to me about a couple issues, and I would prefer to wait to see my doctor. They gave me orders to do PFTs locally, so I was mildly content.

Friday I do my PFTs locally and am not happy with the results... I don't hear anything from clinic.

Called CF Clinic Monday because I felt horrible - knew it was allergies, wanted an Rx for Prednisone and my doc's opinion.

Missed a call Tuesday from my NP, but she said she'd call me back.  She didn't.  I left a msg with the RN - but she NEVER EVER calls me back.

Wednesday, nothing. I started leftover Prednisone and within a couple hours was feeling better.

Thursday, nothing.  Felt much better, and still have no idea what my doc thinks.  Don't really care now.

Friday (today) - it's going to be a 3 day weekend and I still haven't heard from clinic.  I also am going to Europe in about 20 days, and I'd like their opinion on some stuff - like, what the plan should be. I call and leave a passive aggressive message for the RN because she's the bane of my existence.
It may have included "Well, I know you're probably not going to call me back, but it would be AWESOME if you could this time."

Doin' what I have to do, whether I have support from my docs or not, since 1986.  What can I say? I'm still here!

Wednesday, August 13, 2014

Depression Dave

On Monday, a man I have always loved committed suicide.  While I never met him in person, Robin Williams seemed like a friend.  I saw him (as characters on TV and in movies) more often than I would see some friends and relatives.  He made me laugh - a lot.  I remember one depressive episode where Mrs. Doubtfire was the only movie that could make me smile.  I included lyrics from "Friend Like Me" in my vows when Dan and I renewed them in June.  Robin Williams was always around and could always cheer me up.  

And now he's gone.  He took his own life, and that reminds me that on occasion, I think about taking my life.

Someone else's horrible depression can trigger thoughts of my own depression.  Who thought that would be fair?  One cancer patient talking to another cancer patient doesn't make either cancer worse.  In fact, it's probably almost always cathartic.  Now, talking about my depression to people who really understand depression can be very cathartic, but it can also be horrible and, well, depressing.  

I am depressed.  

I don't know what to do about it.  

I feel like I'm drowning.

The last couple months have been a roller coaster for my husband and I.  My health has been up and down, and then down and down and down and maybe it's almost coming up again?  We've been busy.  We've moved, are trying to sell a condo and construction on our new house begins soon.   I've been completely crazy at times. The prednisone is mostly to blame for that, and I made some mistakes because of the highs and lows that come with taking prednisone.  I made some mistakes that caused a "parting of ways" with some friends, and parting ways with those people completely devastated me.  My eye is twitching thinking about it and I can't talk about it.  

I am depressed.  I keep thinking it's mainly related to current stress and recent events and that I'll pull through it soon.  So I keep waiting.  I'm also waiting because I don't know what to do if it doesn't go away.  I don't just have depression.  I have anxiety that is completely like quicksand - it sucks me in and keeps pulling and I can't get out.  The more I try to escape the worse it gets.  I can't escape it.  I am anxious about almost everything.  Right now I am anxious because I'm thinking about depression and anxiety.  I am anxious because my depression is bad and I might need more medication, but I'm already on a really high dose of anti-depressant, and I think my brain is too broken to fix.  

I am anxious because my brain is telling me that I will always be depressed and my life will just suck.  Even the best times will suck a little because depression will always be there.  I might as well give my depression a name - like, Dave - and just accept the fact that Dave lives in my brain and always will.  Maybe I'll try to make friends with Dave and Dave will become more of an acquaintance that you pass in the hall and say "Hi" to and then ignore the rest of the time, instead of being that constant nosy upstairs neighbor who is always judging you and making a ton of noise in the middle of the night and ruining everything including your sleep pattern. 

I wish I could move.  I wish I could move away and no longer have Dave living upstairs.  He follows me everywhere, telling me how horrible I am and how I screw everything up. He lies to me - tells me things I know aren't true and convinces me they might be true.  He makes me second guess myself and the people around me who tell me they love me and that things will get better.   Dave is the worst.  I HATE YOU DAVE! GO AWAY!

Depression sucks and I'm mad as hell about it.  I want to fight it - not just my depression, but help everyone else who is suffering fight, too.  And then Depression Dave tells me that I won't succeed and I should just go back to bed... so maybe I'll sew, or play a video game to distract myself for now.  Because at least when I'm doing those things I'm not thinking about my depression.  I'm at least just numb instead of incredibly sad. 

And that's how I feel about my depression today.   

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