Waving the White Flag

Tomorrow, Tuesday, my doctors are admitting me for severe lung infections due to my cystic fibrosis.

Interestingly, it has been eight months since my last admission. I have been taking oral antibiotics to treat my MRSA infections, but after three months and several courses of these antibiotics, my lung function continues to drop and I continue to be actively sick. Aside from the MRSA, I have a handful of other bacterial strains that often Colonize CF lungs.

What stinks is that every time I go on antibiotics, I would start to feel a bit better, but within a week of finishing my 2 to 3 week course, I get sick again. I have to say it’s really hard to know when to wave the white flag and admit to my doctors that yes, I do need their intervention.

I will get a PICC line IV (long term, semi permanent) inserted into my arm or chest, which allows medication to go into my bigger veins were they won’t irritate the smaller veins closer to the surface.

The PICC line is usually a double lumen kind, which means that there are two tubes entering my vein so that I can have two medications or fluids running at the same time.

I will likely be taking a cocktail of three IV antibiotics, each with their own schedule.

Considering one of my medications runs for 12 hours a day, there are two other medications that have to run on their own schedules, and I usually receive IV fluids 24 hours a day to protect my kidneys, both IV lines are close to constantly being used.

Hence is the typical process of the 2 to 3 week hospitalization for a CF lung exacerbation.

It’s uncomfortable on so many levels, it can be painful, I get a lot of undesirable side effects, and I become sleepless and invariably stressed out. I feel bad for my nurses and my physician team because I get very emotional when I’m inpatient.

Depression and anxiety make things worse, as it does for many CF patients. Imagine being stuck in a 10 x 10 room, being allowed to leave the room only when scheduled for a test, having to eat, sleep, and do everything else from a lumpy bed in a tiny room with a window that often faces a bleak city scape. Oh, and going no longer than 10-20 minutes without someone walking into my room.

Despite all of the things I can and often do go wrong, however, I know that I am going inpatient to get better and to slow down the progression of the past few months. I am to the point where even getting up to shower by myself is a huge challenge, let alone being able to do do anything like cooking or cleaning or the basic stuff that people do when they live their lives.

So for the next few weeks, I will be doing everything in my power to stay calm and sane. I still have this option in my arsenal, so I am thankful. Not ready to think ahead to a point when no more antibiotics work for my bugs. Until then, I continue to fight.

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Climbing back up the Mountain

I was discharged from the hospital 10 days ago, after nearly 3 weeks of intense antibiotic and airway therapy for a lung exacerbation due to Cystic Fibrosis.

It was the sickest I have ever been in my entire life – and I have had some doozies over the past several decades.

And it isn’t over yet. 

Since coming home, I had to get used to being on oxygen full-time. I am hoping and praying that I will not need it indefinitely, and that it is just a matter of recovery. But in the meantime, I depend on a machine to create the O2 and recieve it via a nasal cannula.

At home, I am attached to this…


But we bit the bullet and decided to get a portable Oxygen concentrator to allow me to leave the house without those heavy canisters. It runs on electricity and batteries, and when fully charged, lasts 8-9 hours (based on the amount of oxygen I need right now).


With batteries, it is about 7 pounds. It seems a whole lot better than worrying about filling canisters and having enough around.

I do have a giant canister that lasts about 6 hours, in case of power outage, sitting in the corner just in case. 


I have some more tests to get done this week and will see my CF doctors next week to see how my lungs and kidneys are doing. As soon as my creatine levels are back in a healthy range, I am going back on inhaled Coliston (the last resort antibiotic) for a month or so, to try to keep one particular bug from blowing up again.

My priorities now are getting stronger, trying to regain some of the 8 pounds I lost, keeping my lungs as clear as possible, resting, and tryig to do some “normal” things. Folding laundry, fixing a meal, walking to and from the kitchen to keep my water bottle filled…seriously, I have to super hydrate, so I fill it up every hour or so.

Then there is the very important task of reorienting my kitties to a mommy-ruled domicile. Daddy has a tendency to spoil them when I am not around! I admit that it has been hard not to spoil them since I came home – I missed them so much!!

I am also dealing with a lot of conflicting feelings – gratitude over my recovery, fear about how sick I was, dread that this isn’t the worst I will face, but joy that right now, I feel safe and relatively comfortable.

I just have to remind myself from where I’ve traveled. And that my husband and family are here to help me along this journey.

Back at the Hospital…

I am on day six of yet another stay at “Club Med”.

“Club Med” is how many Cystic Fibrosis patients affectionaty refer to the hospital.

This is becoming a bad habit. I was just here in May for pneumonia infections and IV antibiotic treatment, as well as last December, and June, and 3 days later, back into the hospital for an intestinal blockage a week later…

You get the idea. Continue reading

The Marathon Continues

My life has become a marathon. Whereas in the past, through my childhood and teen years, and even well into adulthood, my health was a series of stops and starts – a lot of sprints and then recovery time. But now, there’s no clearly defined periods of wellness or sickness. It’s all one, long, nonstop flight to infinity.

Big Hill Ahead!

My doctor appointment last week showed that I’m experiencing another lung flare-up/exacerbation/active infections. With more bugs than I can count on one hand, it’s a crap shoot to figure out which of the bacterial strains actively growing are making the loudest noise.

My lung functions are down, I’ve lost weight, and I’m worn out. My doctor suggested that they admit directly from my appointment, but I begged them to give me some time with oral antibiotics (hoping that they some of the bacteria that’s acting up responds to them) and increasing my airway clearance (as close to six hours a day as I can do). Continue reading

Back in the Hospital

So after being home for just a few days, I am back in the hospital. I’ll post something longer once I get home, because it’s kind of hard to write an entire blog post using just my phone.

My bowel is obstructed and I have a blood clot in my spleen. I am still being treated with IV antibiotics for my pneumonia, so it’s basically a trifecta of hell.

I am feeling better each day, but it’s been pretty grueling, physically and mentally. It gets pretty lonely – counting the minutes until each medication infusion is done, or agonizing over each second until medication brings relief for my various discomforts.

I watch the sun rise and set out this window, stuck in this box of four walls that seem to close in inch by inch, moment by moment.

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I apologize for the utterly depressive nature of this post, but right now, my mind just feels so dark.

These feelings are some of the most intolerable aspects of my disease – the isolation, the feeling of imprisonment, the sense that I am left behind.

I know that my feelings will likely elevate with tomorrow’s sunrise, but right now, I can’t see the light.

The Anatomy of a Hospitalization

I just got back from five days in the hospital. I thought I’d share exactly what goes into a typical hospitalization for me.

I had been sick for about two weeks when I called my doctor this past Monday morning. We had tried several different medications to treat my lung infections at home, but when my heart started overworking itself to compensate for my sick lungs, I knew where I was going.

As always, I tried my best to avoid going into the hospital, but I reached a point where there was nothing left that they could do for me at home.

Another Day in Paradise

This was a particularly inconvenient time because Ken and I had planned (what was going to be) an amazing night in Boston – seeing Billy Joel play Fenway Park. I couldn’t have imagined anything more exciting than this event. Anyone who knows me knows how much I love Billy Joel, and at Fenway, well, you couldn’t get much closer to a perfect night. So when it became clear that I needed IV antibiotics, I had to buck up and accept that we’d miss the show. (I’m so happy that we were able to sell the tickets to a friend who is also a huge Billy Joel fan. News flash – they had an amazing time!!)

Me and my stuffed dog. He's a great arm rest!

Me and my stuffed dog. He’s a great arm rest!

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Great Strides, Darts Tournament, and Health Update

I know that I still have six more years to cover for my “CF Journey,” but life got really crazy this month and I wanted to catch you all up with what’s happening.

Fundraising Update

First, the wonderful news. May was Cystic Fibrosis Awareness Month and we returned to do the annual Great Strides walk on Sunday, May 18. We renamed our team “Toni’s Titans” and generated a souped-up fundraising campaign.

We also planned a dart tournament at a local pub to benefit the CF Foundation, the proceeds which we’d present the next day at the Great Strides walk. We had 22 dart players and over 40 people attend. For an event that Ken put together in less than 3 weeks, it was wildly successful. Local businesses and residents donated prizes that earned additional funds and attracted people to the event. Everyone loves a prize!

Toni's Titans Team Photo 2014.

Toni’s Titans Team Photo 2014.

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