Hope 2.0

I have entered a new phase of CF bad-assery. CF has declared war on me and is trying to drag me down to a very low level of lung and body functioning.

So let’s just say that I am now in The Big Fight.

I spent all of February and March sick, trying to fight the infections that I can (MRSA) at home. I waited too long and the bugs that I cannot treat at home* with oral antibiotics went crazy.

My body was overcome with inflammation.

Facing the Piper

I had a doctor appointment and lung function tests. My lungs are operating at 30%.

30%.

If I was interested in a transplant, this is the time docs start approaching the topic. But for a number of reasons, I am not a good candidate (not everyone is), Which in a way, is good because there are not enough organs to go around. Of course, if people increased the amount of organs available in the national organ donation database, this wouldn’t be a problem for those who need it, but for me, I knew that I would not be a good candidate. So that’s off the table.

Thirty percent – if I stayed at this level – is considered “end stage”. But you can live at end stage for a long time. Kind of weird to think about.

Paying the Piper

I entered the hospital with inflammation levels (measured by a marker called C-Reactive Protein) at 238. Normal is 1.0-3.0.

I was on 4.0 liters of Oxygen.

The Carbon Dioxide in my blood is 66, out of a normal 40ish range.

I began a 14-day course of 3 IV antibiotics, around the clock. I ended up with a kidney injury due to the toxicity of some of the meds, so I had to go on extra IV fluids because no human could have drank enough.

I endured a lot of pokes and sticks and have the battle wounds to share. But I had a lot of love from my husband, cats, family and friends to get me through the moments the tears fell.

It made the drudgery of daily work manageable.

I spent so much time and energy doing airway clearance and exercise – 3 hours of vest, an our of a machine my clinic is trialing, an hour (over course of the day) using a handheld blowing device called the Aerobika, walking 1500-3,000 steps a day (starting around day 6), and doing pilates each day. Plus trying to eat and sleep, despite 5 am blood tests and 11pm vital sign checks. And there was no time to nap unless I begged for an hour or two of no interruptions, but every other department (besides nursing and the doctors) decided that request didn’t affect them.

At day 10, they retested my lung function and it had only improved to 33%.

33%.

Granted, I always continue to improve after leaving the hospital, but this was not encouraging.

I left the hospital on day 15, kidneys still irritated, on 3 liters of oxygen, and feeling like this body of mine is not mine.

The Real Work Begins

Coming home was daunting. I knew I had fallen health-wise, but this time was so different. Everything is much slower.

Let me say that I am recovering, but I have a lot deeper of a hole to climb out of, have to take many more breaks, and sometimes have to ride out a plateau every few ascents.

I am making changes and setting daily goals and have to commit to a walking regimen to keep me as strong as possible, endurance-wise. Keeping up meds, fluids, airway clearance, and a good place for my mind to rest. Demanding that negative energy not affect me. Stress and bad energy is so damaging to the mind, heart, body and soul. No more do I give permission for others’ emotions to attach to me.

So… how much is this from a single exacerbation and how much is progression? There’s no way to tell, it’s a combination of both. I try not to blame myself for waiting a couple of weeks too long, because that does nothing positive for me. It is hard when everything to me seems like a gradual change, especially when your body and your mind or not in the shape they need to be to look at things objectively. But I have learned a lesson in recognizing my limitations sooner. This requires me to lean more on Ken and my doctors and notify them of changes that I might deem as small, as “little losses” might not be so little in impact.

Hope 2.0

Since transplant is not an option, and they treated my infections that were active, and I’ve tried a lot of the other treatments out there without much improvement, pretty much all that’s left for the my doctor to try is to put me on the brand new CF drug, Symdeko.

Like its cousin Orkambi, which I took two and half years ago and had a hard time managing due to side effects and medication interactions, it attempts to fix the defect or the mutation in the way that my cells process salt and water.

There may be a period of adjustment as the mucus thins and my body goes through a “purge”, a period of time where the existing mucus thins out and comes out in large quantities.

This can be traumatizing because it mimics the signs of an infection, it’s physically draining, and there are also side effects that may or may not show up.

So there you have it.

Hope. 2.0.

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Ten-Week Update

Over the past two months, I have been recovering from a 3-week stay in the hospital for lung infections due to some pretty serious bugs which are tough to treat. I also ended up with a blood infection, and my kidneys suffered some damage from the strong antibiotics I had to take via IV.

When I first came home – for the first time on home oxygen – I was not prepared for how difficult the recovery journey would take.

The ride home from hospital

I had lost significant muscle tone and overall physical strength. I had sapped most of my reserves of hope that I would ever be “well enough” again. I was also on 2L oxygen 24/7.
It was through sheer stubborness, plenty of crying sessions, dozens of prayers for healing and courage, that mentally, I could get through this experience.

Physically – well – we are not quite there yet. The good news is that I only need Oxygen for extreme exertion (such as going grocery shopping, driving, etc.), I don’t need my husband’s help to shower, and I can now cook a few days a week.

I just began driving about 2 weeks ago – my upper body strength wasn’t much to begin with, but one morning, I decided that I was going to run errands by myself. Good thing I brought along the portable O2 concentrator because I ended up having to sit on the floor at the store to rest. But I made it to the pharmacy as well, and carried in and put away all my purchases. It took 2 days to recover, but it began getting the ball rolling.


I actually felt well enough to celebrate Easter and Mother’s day – holidays that fall into one of the times of year that I am sickest.

Mother’s Day with one of my Godsons

The best medicine – one of my cats!

Ken and I at Easter…a rare sunshiny day! My rock!

Unfortunately, I have had to miss some other important family events due to my chronic issues and how strong/not strong enough I felt on those days, which were very difficult. And my CF is trying to take me down again with some very unpleasant belly problems. But my doctor is on top of it and trying to keep me out of the hospital

As spring turns into summer, I hope to enjoy life more, and maybe even have some energy left to enjoy friends!!!! Wouldn’t that be wonderful???

I have to say, if it weren’t for Facebook, I would not have the support and encouragement that I have. Even though I don’t much get to see friends, those who really care have made themselves known. Prayers, memes to make me laugh, cards, care packages, letters – the love behind it all empowers me to keep pushing, to keep fighting.
There are so many people I want to thank, and cannot possibly type that long right now, but you know who you are.

Remember that the smallest victories can make the biggest impacts!

Not My Miracle

“A vacation!” I squealed.

“To where?” my husband asked.

“Anywhere! After Orkambi, I’ll probably be able to go anywhere. I read that someone traveled to Europe after years of being too sick to do much of anything…

…Ohh!! We can also go see Billy Joel at Fenway next summer! Remember how I was in the hospital when we had 7th row tickets 2 years ago and we had to sell them?

Oooohh…We can also visit your parents next Christmas!”

On a random day this past November, we were hanging out in the living room, watching a movie. My husband was sitting on the love seat, and I was laying on the couch, clutching the area of my chest where my lungs felt so tight.

I was taking a new medication, developed specifically for people with my gene mutation of Cystic Fibrosis. The medication with the funny name – Orkambi – held so much promise, but was known to cause chest tightness and shortness of breath in the initial stages of treatment.

My husband and I were okay with that – what’s a week or two, or maybe a couple of months, of discomfort, if it meant it would change my – our – entire lives? Continue reading

Hope is an Amazing Thing

Tomorrow marks the start of my second month on the new CF drug, Orkambi.

Just arrived!

Just arrived!

It’s been one crazy month. Just as I started the Orkambi, I ended up having a flareup of my bugs. It came on kind of slowly.

Prior to starting Orkambi, my doctors warned me that I could experience side effects, so for the first week, I chalked up most of the symptoms to the new medication. But my husband, in his usual crazily-accurate assessment of my symptoms, tried to convince me to contact my doctors. I finally did, when my fever spiked to 103.5, which definitely wasn’t listed on my list of symptoms to monitor. Continue reading

And After the Rain, Sun-filled Adventures

I’m still sick – it’s been about 2 1/2 months now, and am nearing the time when we need to decide as to whether we need to escalate or not. Like the saying goes, “April showers” and all that jazz… I guess I’m in a “rainy” phase, and I’m very much looking forward to sunnier adventures.

I made a list of things I’d like to do this summer – some things to think about when I’m in pain or feeling weak, something to smile about when I’m feeling low, and something that will build memories and moments with those I love.

So now, as I sit here on my third hour of Airway Clearance today, I have compiled this list, as emotional inspiration and motivation to get better.

May

  • Plant an Herb Garden. It won’t be big; it will just be some of the stuff we like. I have a black thumb, which means most stuff I try to grow dies on me. But this might be different…I hope!! I love cooking with fresh vegetables and herbs, especially my homemade tomato sauce!

    Fresh tomatoes, fresh basil, fresh oregano...

    Fresh tomatoes, fresh basil, fresh oregano…

  • Fundraising! My husband plays competitive darts and he is running the second annual Darts For Cystic Fibrosis competition fundraiser. The actual event falls over the weekend in mid-May. (This means that if I have to go into the hospital, I need to make sure I am out in time for this!).
  • Opening the pool!! Last summer was a dud, considering temperatures never once rose about 93 degrees, the many days in the 70s and cold evenings that made the pool water relatively freezing, along with two separate week-long hospitalizations, separated by 4 days and for 2 different health crises. I use my pool as a place to exercise (it’s gentler on my body) and to cool off (CF patients often lose too much salt in their sweat, so it’s easy to get heat exhaustion/heat stroke). Otherwise, going outside in the summer is really difficult.

    This duck tells us when the water is the perfect temperature!

    This duck tells us when the water is the perfect temperature!

June

  • The Gala. This is a biggie. My college is holding a 50-Year Gala celebrating the Student Center – bringing together everyone who worked on campus activities such as the newspaper (me), campus programming, Student Government, etc. This the place where I blossomed academically, socially, and professionally, during a time when I felt my most creative, energetic and looking forward to where life would take me next. I can’t miss it. I just can’t. I will get to see so many of my old friends, some who I haven’t seen since college 20 years ago.

    Dress shopping - an added bonus of having a swanky event to attend!

    Dress shopping – an added bonus of having a swanky event to attend!

July

  • Beach Birthday. Last  year, we held a birthday celebration for my niece on the beach. My sisters and I LOVE the beach, and it was perhaps one of the very best days the three of us (and their families) had spent together in EONS. We hope to do it again this summer.

    Sisters at the beach

    Sisters at the beach

  • A Wedding! One of my very best guy friends in the world is getting married. (To the sweetest girl I think I’ve EVER met), and I am so happy to share in their special day. I am pretty excited for them both, and to celebrate with some of our close-knit group.

August

  • Balloons! The Plainville Hot Air Balloon Show. I’ve always wanted to go to this. I have never ridden in a balloon but there’s a first time for everything, right? Plus, it seems like a great photography excursion. I am hoping that the stars align and that A. It’s great weather and B. I’m healthy enough to go.

Miscellaneous

  • Walks along the local trails. Our city and the surrounding towns has a really nice trail system. They’re well shaded and perfect for those warm Saturdays when the air is clean and the skies are clear.
View from the Red Bridge along the trail.

View from the Red Bridge along the trail

  • Grilling!! We love cooking outside and eating in the fresh air.
  • Clamming! A new experience that I hope to have this summer. Ken’s buddies go to RI in the summer in search of clams and I wanted to tag along both to see what it’s like, and to find another excuse to go to the beach. Plus, I imagine that I could find some amazing shells up there.

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    SHAMELESS PLUG TO HELP ADD TO MY COLLECTION!!

I collect sea shells. I thought  I’d mention it here since maybe some people will see it – if you’re ever at the beach, especially one along bigger open waters or foreign shores, and you find an interesting shell that you don’t fancy keeping, please keep me in mind. I love the ocean and shells remind me of that happy place. I already have a few vases full of shells I’ve collected. I would love more. I have very special plans for my sea shells, that I can’t disclose at the moment.

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Well, that’s my hope for summer. Obviously, it’s always my health that dictates what I’ll be able to do, but I am tying out this new thing called “fortitude” – I’m setting personal goals and then (trying) to do everything I can to reach those goals. I find that I am more positive and motivated when I have something to look forward to, and this list is full of fun things!!

I’d love to hear about any plans you are making, or things you hope to do.