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!


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.

Growing Stronger

Activity. Our bodies are made to move. Even when I’m in the hospital with lung infections/pneumonia, my doctors expect me to exercise regularly (as tolerated, of course). At my hospital, CF patients now usually stay on the Pulmonary floor, have visits from Physical therapy to walk in the hall or up and down stairs, and a stationary bike moved into the hospital room. This is in addition to Respiratory Therapy six times a day.

I am not a fan of the stationary bike, as it’s really uncomfortable to sit on, so I walk the halls several times a day, and I do Pilates right there in my bed, when it’s safe to do so (as in I don’t have low blood pressure, low oxygen levels, or low blood sugar, all of which can happen during these infections).

Last fall, during and post hospitalization, I had lost a lot of my muscle tone. Pilates has brought me back from a state of weak muscles and as a result, even poorer levels of endurance.


What is Pilates?

It’s a series of movements, designed to stretch, lengthen, and strengthen your muscles, especially your core – the center of your body, including the abs and your back. It helps you strengthen and sculpt your muscles and gain flexibility.

Some people use pilates machines at the gym, resistance bands, or simply, their own bodies, to create resistance. This is what makes Pilates so simple – you can do it anywhere, even in bed!

In fact, physician Joseph Pilates created the exercise regimen for bedridden patients,rigging springs to the hospital bed to create resistance . Its effectiveness was tested during a flu epidemic that struck England in 1918, when thousands of patients died, but not a single patient trained in Pilates. Interestingly, Dr. Pilates’ movements influenced the curriculum of modern dance training and techniques.

The Basics

Many people simply use an exercise mat on the floor, and use their own body for resistance. It looks easy, but it takes practice to not only learn the movements, but to learn what muscles you’re supposed to be feeling, where they are, and how everything’s connected.

I learned Pilates through watching DVDs created by instructor Mari Winsor. I wore out my first set of DVDs after a few years and bought a second set. After another few years, I pretty much knew the movements and routines by heart, so I didn’t have to watch them to complete a workout.

Although it’s not an aerobic exercise routine, prepare to sweat! Imagine holding your arms out straight in front of you, gently reaching them as far as they can go, and seeing how long you can hold them out. That’s what Pilates feels like.

Getting Started

The first step is to learn the movements. They look simple, and they are, logistically. It’s a series of stretching, reaching, and performing gentle movements in repetition.

Once you learn the movements – some might take a few weeks before you can actually perform them all – you can move on to performing repetitions. Some of the movements are done in a set of 3, others in a set of 10. Many are done forwards and backwards, up and down, left and right.

After gaining enough strength to complete all of the reps, you can start working on increasing your resistance – whether it’s on a machine, using an exercise band, or your body’s own weight. I prefer using my own body for resistance, but just recently started to experiment with exercise bands.

A Lifetime of Growth

When I watched those DVDs the very first time in 2003, I remember thinking that I must be crazy. Although I had studied dance for several years, had been through ACL reconstruction and rehabilitation, and knew a lot about stretching and leg exercises, the movements were excruciating to master. I thought that I was pretty good at exercising – I was a gym rat during college and my 20s, and could do 50 sit ups, but this was like sit ups on crack, in every part of my body.

What was great, though, was that this particular program – Winsor Pilates – had 5 training DVDs, beginning with the “Basic” 20-minute learning workout, and specific workouts for the Abs, Upper Body, “Buns & Thighs” and Advanced Slimming. I later purchased an Aerobic version which was intense, non-stop movement, and it wiped me out.

It took a few weeks just to learn the movements and develop muscle memory. It took another month or two to work up to getting through the entire beginner 20-minute workout.

I tend to go through phases when I do it 3-6 days a week for several months, only to have to stop for a while due to a setback like a bad infection, belly problems, etc.

A ToniV Tradition

Regardless of where I am health-wise, however, I always come back to Pilates when I need to regain lost strength and/or endurance. Since restarting several months ago and focusing on my core and legs, I have gained enough strength to carry me up the stairs without putting all of the onus on my lungs and heart. The gains I have made have inspired me to start working on my arms this past week. A pair of 10-pound weights and determination are all I need to start building some lean muscle in my upper body.

I look forward to continuing to grow stronger, which will provide me with more endurance and support when I am not well.

What do you do to stay or get stronger during or after a flareup?