Tag: Cystic Fibrosis

  • Cystic Diagnosis Part 6: My nightmare the night after the diagnosis

    The night after we received news that Katie had cystic fibrosis, I had a nightmare. Here are the notes that I took that morning after I woke up:

    I dreamt that I heard Noah calling me from outside. Now I am frightened that I may lose both of my children…

    It was a faint crying, calling out. I thought that it was one of the neighbours. But, I looked out the windows (bedroom & bathroom), trying to see if Noah was there. I didn’t want to check on him in his room in case I woke him.

    But, I had this horrible fear that he was sleepwalking or just walked out the front door on his own. I envisioned him stuck outside, curled up on the porch or field beside the house under the big tree, curled up in a ball, freezing.

    I had a sense of panic, as if I was too late to save him from freezing. It was all I could do not to panic.

    It was pretty upsetting. I was already worried about Katie’s mortality. And now, I was also worrying about Noah’s mortality as well. I felt so helpless. I felt so afraid. I felt frustrated. I felt scared.

    I was processing what CF meant to Katie and to our family and it scared me. As a father, I am supposed to protect my family. But, in this case, I felt that there was nothing I could do. I’m not a doctor. I don’t have a cure. I don’t have the means to fund a cure.

    It took a while for this cloud to lift. But it did. The cloud comes back once in a while. It is what it is. Can’t do much about it.

    Up next: First clinic visit at McMaster

  • Cystic Diagnosis Part 5: Diagnosis

    On Tuesday afternoon (Sept 30) just after noon, Julie called me at work, crying. She said the CF clinic just called, and Katie’s results came back positive for CF. I took the afternoon off. Shortly after I got home, the Celiac doctor (the one that referred us to the CF clinic) called us from his cell phone. He was in Israel on the last day of a vacation and he felt the need to call us to reassure us that even though the results were positive, there was reason for hope. He said he would be back in the office the following day and he would follow up with another phone call then.

    The next day (Wed Oct 1), the Celiac doctor called us from his office at McMaster. He explained what the positive result meant:

    • Katie most likely has CF.
    • There are few, if any, false positives.
    • But, they’d do another test to make sure.
    • He explained that CF isn’t as scary as it once was.
    • Half of CF patients now live into their 30s and beyond.
    • And, he said that the daily regimen of treatments has been key to the increased life span (only 20 years ago, the median life span was only 16 years of age).

    Our lives changed in an instant that day. We entered into a period of mourning for a number of days. We were devastated. We were fearful for what this meant for Katie. We were fearful for what it meant for us as a family. Noah, only 19 months older than Katie, would be impacted by this as well.

    We surrounded ourselves by those that could offer comfort during those first few days after the diagnosis. Our immediate families, friends and our extended church family became our strength in those first few days and weeks after the diagnosis.

    We did our best to put on a brave face though… just two days later, on October 2, we hosted a large family gathering to celebrate Noah’s 3rd birthday. Life had to go on. We couldn’t deprive Noah of joy during this time. So, we did our best to celebrate his birthday on his special day. We did have a good time, but, it was the first time that we had to address having a good time while having sad thoughts always lurking in the background.

    Next week, I’ll conclude this series with a couple of posts on the days following the diagnosis.

    Thanks for reading and talk to you next week.

    Todd

  • Cystic Diagnosis Part 4: Sweat Test at the CF Clinic

    On Thurs Sept 25, we visited the CF clinic at McMaster Hospital.
    Sweat Test machine at McMaster

    The clinic at Mac was fantastic. The CF test itself is pretty archaic, but, apparently, it’s also extremely accurate. They refer to Mac’s test as “the gold standard”. And, I’ve been told that if you get a CF test, McMaster is the place to get it. Other hospitals do the test, but, even if their results come back positive, they still send you to McMaster to “make sure”. The test involves measuring the amount of salt in the patient’s sweat. It goes like this:

    1. They clean the person’s forearm with alcohol or some other cleaning material.
    2. They put a metal plate about the size of a credit card on the arm. They connect this metal plate to a big battery-sized device that looks like a radio from WWII. This machine sends an electrical pulse through the arm, stimulating it and making it sweat. This happens for approx 5 minutes.
    3. They take the plate off and they put a piece of sterile gauze on the arm, cover it with a plastic bandage and wrap the whole thing in a towel and tape the towel over the arm.
    4. You go hang out for a 1/2 hour, while the arm sweats and the sterile gauze soaks it up.
    5. Go back into the clinic room where they take the gauze off and send it off for testing.
    6. Done. Pretty simple.

    NOTE: none of this is uncomfortable for the child. At most, the person will wonder why the plate is buzzing on their arm.

    They told us that the results would be available quite quickly – our doctor would likely get the results back the next day (which would have meant Friday Sept 26 in the afternoon) but we likely wouldn’t hear back until the next week, as it takes doctors FOREVER to follow up on this stuff.
    So… we spent a really long weekend worrying. Me, not so much. I was in denial that this would be something we’d have to deal with. Julie was panicked though. She was certain that Katie had CF. She called it “Mother’s intuition”.
    Monday, still no word. Our doctor hadn’t heard. The clinic was unreachable. We started to get puzzled as to why it was taking so long.
    Up next: Diagnosis

  • Cystic Diagnosis Part 3: Family Doctor & Celiac Clinic

    McMaster Children’s Hospital

    Picking up where we left off, Julie visited our family doctor the following Monday (Aug 25). The doctor reiterated #s 1 to 3 that we were told at the emergency room the Friday prior:

    1. It’s random. It won’t happen again. Don’t worry about it.
    2. Celiac disease – dietary disorder where the body can’t digest wheat properly.
    3. Cystic Fibrosis – but… the odds are quite low on this, so don’t worry about it.

    And, the doctor also repeated her earlier statement that it likely wasn’t CF, because Katie didn’t have any of the other symptoms.

    So… our family doctor booked us to visit the Celiac clinic at McMaster Hospital. We went to the Celiac clinic on Thurs September 11 2008. The clinic took some notes. They examined Katie. They took some blood. And they also spent a fair amount of time looking at her body – looking back, we can now see that they were considering whether she had “failure to thrive”.

    Funny enough, at that time, she had started to look a bit small. It wasn’t a huge deal, but we were starting to notice her slipping a bit in how skinny she looked. This was strange, as she was a pretty chubby baby. We look back at baby pictures and she was always a pretty good weight. But, around the time we started to have her tested for Celiac and CF, she started to look thinner.

    Celiac results came back a week or so later – I don’t have the exact date for that handy. Negative. She did not have Celiac disease. We were down to two options at that point: The prolapsed rectum was a random thing, or, we were looking at Cystic Fibrosis.

    Next step: test for CF. The Celiac clinic booked that appointment for us for Thurs Sept 25.

    Next post: Sweat test at the CF clinic

  • Cystic Diagnosis Part 2: Warning Signs

    Katie’s symptoms were subtle at first. She had colds that took a long time to shake. She had a hard time sleeping at night when she was sick with colds. Looking back, before her diagnosis, she had a LOT of sleepless nights. She was diagnosed at 17 months of age, and up until that point, Julie and I both wondered when she’d start sleeping through the night on her own. We felt that it was taking forever for her to do that.
    But, that in itself wasn’t a big deal. We repeatedly asked our doctor (who had been a pediatrician prior to going into family medicine) if she thought Katie’s constant colds were cause for concern. Our doctor said no, because most kids will get up to 10 colds a year. It didn’t seem unusual. Looking back, we didn’t have any cause for concern as Katie wasn’t exhibiting any of the other symptoms when she was younger (under a year old)… symptoms like failure to thrive, constant appetite, underweight, etc. So, we didn’t worry about it much.
    As well, she has always had a bit of a big belly. Nothing too major, but her belly has always been pretty big compared to the rest of her body.But, that’s not really a big deal and she’ll likely grow out of it.
    The one other symptom that we had always noticed, but didn’t pay much attention to was her poop. It was always really smelly and some of her food seemed to come out pretty undigested. But again, looking back, we didn’t clue in to this until after the diagnosis.
    Then, on Friday August 22, I was changing Katie’s diaper and she had some kind of a brown walnut shaped thing coming out of her bum. I called Julie into the room. She didn’t know what it was either. So, we bundled her up and Julie took her to emergency.
    Note: Katie wasn’t uncomfortable. It didn’t seem to hurt her.
    Julie FINALLY saw the ER doctor after waiting in the ER for about 4 hours. By that time, the walnut sized thing had disappeared. The doctor told Julie that it sounded like a prolapsed rectum. The doctor said it shouldn’t be a cause for concern, but to go see our family doctor the next week to investigate further. The doctor said prolapsed rectums are typically caused by one of three things:
    1. It’s random. It won’t happen again. Don’t worry about it.
    2. Celiac disease – dietary disorder where the body can’t digest wheat properly.
    3. Cystic Fibrosis – but… the odds are quite low on this, so don’t worry about it.

    So… we waited through a long and agonizing weekend before booking a visit with our family doctor the following week.

    Next up: family doctor & celiac clinic