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.
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!
Together, our Darts for Cystic Fibrosis and general fundraising through the Great Strides site raised $2,380. We just received another $50 donation, so that puts us at only $70 below our goal. If you wish to help us reach that $2,500 level, please visit our team page.
We cannot thank you all enough – friends, families, coworkers, and strangers – for your support, generosity, helping with the raffle, joining our team, wearing our team t-shirts, sharing the events on Facebook pages, and simply offering encouragement.
We’re back on the roller coaster.
The good news is that I started a new mediation that helps some of my stomach issues. My stomach doesn’t empty properly after eating, so I get a lot of pain, upset stomach and nausea, and get full very easily. The specialist I saw in Boston a couple of months ago put me on medication to help my stomach do what it’s supposed to do, instead of letting the food stay in my belly for hours or even days.
The medication is difficult to get in the U.S., but I’ve found a local doctor who will run interference and treat me locally. The only other challenge is that the medication can cause a problem with the heart, which along wasn’t that high a risk, but I also take another medication daily with the same potential problem, and an entire class of antibiotics that I sometimes take can cause the same problems. I need to have routine EKGs to check for any problems.
The medication has relieved me of more than half my stomach pain and discomfort. It also gave me a sensation that I didn’t recognize at first – a growling stomach. It’s been years and years since I had an empty stomach, even if I hadn’t eaten for a few days. I was sitting with Ken watching a movie and I heard an obnoxious growl, and asked him what that was. He said, “um, your stomach? It’s growling”.
Once again, the infections in my lungs have flared up, and I have active MRSA and Pseudomonas Aeriginosa infections growing, and it’s wreaking havoc on my lungs’ ability to hold oxygen. There’s a simple device that clamps on the finger and sends light waves through the finger to measure Oxygen Saturation. The infections cause high levels of inflammation and my lungs get really twitchy and swollen inside. As a result, there’s less room for Oxygen.
Healthy/normal Oxygen Saturation is 95-100%. Under 90% usually requires supplemental Oxygen. Mine has dropped to as low as 86% but thankfully don’t stay that long. I have been sitting on the border at 90, so I am doing everything I can to help my lungs – medications, airway clearance, etc.
There are several risks associated with chronic low Oxygen levels, so we have to watch them carefully. My O2 levels sometimes drop at night even if I am not sick, so compound that with 2 pneumonia infections and you’ve got a recipe for respiratory distress.
The sensation of low Oxygen is scary. You feel like your body is being squeezed. Your breaths feel like they are stacking on top of each other, getting heavier and heavier, unable to get under them and exhale. It’s the most awful sense of uncomfortable I’ve ever experienced. You literally feel starved for air. It’s a slow, agonizing feeling, and the lungs try to compensate by coughing, which causes more inflammation. Then you have tight, sore, unhappy lungs.
I am waiting for my doctors to schedule a test to see where my oxygen levels go at night. Even if Oxygen deprivation only happens at night, it can affect your body during the daytime. Right now, I am having constant low Oxygen levels. I have to avoid too much activity because that exacerbates it, and am taking a boatload of steroids to help open my airways enough that I wouldn’t need O2 right now.
I’ve been really scared about needing O2, but at this point, I am so tired of air hunger that I don’t care about attaching myself to a canister. I just want my air back.
So that’s it for now. I hope to finish my CF journey soon. Thanks for reading and I hope to be back soon!