Hope Sinks

Remember my last post, when I was so full of hope and excitement that if I can get myself as fit as I can, my life could change.

In my head, I had visions of hiking, doing normal household stuff and running errands, going out socially for more than 40 minutes, and even feeling well enough to go on a vacation (it has been 11years…we have planned so many trips that we had to cancel because I had to go into the hospital or was close to it).

Then I got sick. Too sick to start working out. MRSA sick with constant fevers, cough, sinus issues, and fatigue. Oh and the Flu. I took the Tamiflu and also started antibiotics. By the end of week 2 on antibiotics, I told the doctor I wasn’t feeling quite better and that probably I needed another week.

I finished week 3, and felt marginally better. Stronger. And as fate worked out, the weather was warming up enough to use my treadmill in the basement (it is not heated).

Three days after finishing the antibiotics, I started coughing, but figured that it was just left over stuff from the recent infection.

After another three days, I suddenly began coughing uncontrollably, felt my fever coming on, was feeling very junky in my lungs, and I knew that my MRSA was ramping up again.

I spoke to my doctors on Monday, who put me on a different antibiotic, and tonight – 24 hours later, laying on the couch unable to sleep, coughing which sounds like a pipe has burst, and having to wear my oxygen (which is a huge bummer because it had been weeks since I needed it more than a few hours at a time).

In the meantime, several members of my family have had their own issues to deal with, and I find myself having difficulty keeping my head above water.

I am tired of being sick. I’m tired of coughing. I’m tired of fevers ravaging my body with aches. I’m tired of having to judge whether doing a little laundry is going to force me to nap for three hours later That day or have to rest the entire day tomorrow.

I’m sorry that this is not a positive sounding post, but it’s almost midnight, I feel too awful to sleep, and my mind is racing with all the things that I am probably never going to get to do. Thanks I’ve been trying to do for years, thinks that any 46-year-old should be able to do. I’m sorry that this is not a positive sounding post, but it’s almost midnight, I feel too awful to sleep, and my mind is racing with all the things that I am probably never going to get to do. Things that I’ve been trying to do for years, things that any 46-year-old woman should be able to do.

The cliché about having your health being everything, is so damn accurate that it hurts. And what makes it worse is that I am watching the world go by. Outside, kids are playing and people are walking their dogs. The movies and TV shows I watch because I’ve read everything that I have and honestly cannot concentrate on anything else at this point – keep telling me where to go for vacation, parties I should be attending every weekend, planning for summer, etc., On Facebook, and in articles, I get to read about life as a parent, exotic places to travel to, and the cool/ fun/ amazing adventure others are experiencing.

I feel like there really isn’t much more to look forward to, when every time I try to plan something, whether it’s to go to the store myself, to work out, or to do something big like visiting my in-laws, my health blocks me from having a life.

Losing hope again.

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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.

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!

The Top 5%

I’ve recently realized something profound.

When I was diagnosed in 1972 – a month after my first birthday, the data showed that most patients wouldn’t reach their teen years.

Amazingly, though, as of 2014,  of all CF patients currently living, 50.7% are older than 18. That’s incredible news. However, the median age at death in that same year was only 29.1 years.

I am 44 years old. In the general population, most people would consider that middle-aged. But in the CF population, I’m an anomaly.

The fact is, only 5 percent of Cystic Fibrosis patients are older than 40.*

*According to info published in the most recent Cystic Fibrosis Patient Registry, information collected from 28,676 patients seen at accredited CF care centers. Most, but not all, CF patients attend such centers.


I have so many questions, but I know that I will not find any real answers.

So I will share the three things that I DO know.

1. I am beating the odds.

  • Whether you believe in luck, fate, chance, karma, punishment, or a higher being’s plan for you…
  • Whether you believe that those who live longer are more compliant with their medications and treatments than those who don’t live as long (note that I do NOT subscribe to this theory)…
  • Whether it’s due to my environment and lifestyle, such as the way or what I eat, how I manage certain issues, my BMI, the type or amount of exercise I do, my airway clearance regimen, how much sleep I get each night, or some concoction of supplements that help me recovery from flare-ups or that slow overall progression…
  • Whether it’s because, in addition to my mutated genes that cause CF, I have some crazy fabulous genes that compete with the bad ones, and many times win the battle….heck, my two grandmothers did not pass until they were in their 90s, so I have some good genes in me.

2. CF is taking its cumulative toll on my body

As I age, my body is battling the effects of decades of malfunctioning, infections and organ disease, and toxic medications to help me to the most basic things such as breathing and eating.

My lungs, digestive system, and other organs – in fact, every cell in my body – have been fighting the imbalance of salt channels and the thick mucus that causes disease in our bodies for more than 4 decades. As my organs deal with the dysfunction and disease, they become inflamed with every exacerbation. The frequency of exacerbations and the shorter recovery times between them mean that my body is often in a state of constant inflammation. And unfortunately, the number one medication that treats inflammation is also really, really bad for people with CF. It weakens our immune system and also negatively affects those of us with CF related Diabetes.

3. Having CF doesn’t preclude me from what’s considered normal symptoms of aging. Name a body part and it changes with age. CF doesn’t stop those things from happening.

My body has been fighting – since before I was born – to perform normally. Now, in what is considered middle age for healthy people, I’m starting to experience regular “growing old” stuff. The kind of stuff that make you think, “I’m not as young as I used to be”. The things that slaps you into coherence that you’re really NOT 23 anymore. Or even 33.

At least I can laugh and commiserate with my sisters when we notice one another’s white hair spreading across our foreheads, or deal with puffy eyes or a quicker-to-twinge back muscle.

Back to the white hair thing – I recently came across an online group for people with CF who have gray hair. As much as I have been fighting this sign of aging, others have reminded me that our predecessors didn’t get the chance to have their first gray or white hair!! What a privilege is it to actually have reached a point in life that indicates you’ve survived into adulthood! While I still haven’t given up the color battle, I do feel like it’s my own little secret, my own little victory that I get to wear every day (there’s always a new stray white hair popping out, somewhere on my head!).

Next-to-last final thought

All of this also reminds me that I need to give myself a break sometimes. I have high expectations of what I should be able to do and so many things that I want to do. And the reality is, that my body has been fighting for so long just to be alive, that sometimes I think I expect too much from it.

If, on any given day, my biggest accomplishment is taking a shower, I need to be OK with that. I always talk about celebrating the small victories, and I think it’s important to view all aspects of my life that way. I am proud of what I have accomplished – not just physically, or professionally, but spiritually, mentally, in the way that I view and live my life.

But the real point I am making…

I am 44 years old, I have CF, and I am still here.

And I feel damn lucky.

The Anatomy of an Interruption

There I was, getting better from my recent lung infection, when the other part of my body that Cystic Fibrosis likes to mess up – my belly – decided to stir up some trouble.

I was seriously at a point in my life where I was beginning an “overhaul” of me – ToniV. It sounds silly, but a few days prior, I had actually taken a poster-sized foam board and outlined my plan for overhauling 7 areas of my life. 

Some of the Gastro Intestinal problems that patients with CF can face, that I have, include Pancreatic Insufficiency (the mucus blocks digestive enzymes from leaving the pancreas), CF related Diabetes, GERD, chronic Distal Intestinal Obstructive Syndrome (called DIOS, which is frequent bowel blockages caused by mucus and poor digestion), Chronic Pancreatitis, and Gastroparesis (slow emptying gut). 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