I have Cystic Fibrosis – Jacob’s Story


Hi, everyone today’s video is going to be a little different. I wanted to share my personal cystic fibrosis Experience with you I know many of our friends know that I have Cf But they may not know what that means or what my experience has been up to this point? I also wanted to make it clear that. I’m not in any way looking for sympathy I am very lucky to have a mild form of cf and there are people out there who are exponentially worse off than I am So my goal here is to raise awareness for the disease by sharing what I went through I Had a much easier Time than most people so as I tell my story keep in mind, most cf Errs Have to go through much more And now far really it started if you don’t know what cystic fibrosis is it’s a genetic disorder that affects mostly the lungs but also the pancreas liver kidneys and intestines So I’ll let you google it from there for more specific information And also I want to let you know I am reading this So please forgive me forgive me as my eyes bounced all over the screen If I don’t do this, I’ll lose my train of thought and go off on some random unrelated stories and tangents and things so bear with me Once there, and I got married we agreed to wait until I turned 30 before we started trying to have kids so when I day came We got started and after a year with no luck we noticed some issues that We thought might be playing apart and preventing us from conceiving, so we went to a fertility specialist and they ran a couple of tests on Sarah and the one obligatory tests on me and I’ll save you the details and just tell you that I ended up being the one with the fertility issues so that doctor Fertility specialist sent me to a urologist and once again skipping over some details TmI the urologist quickly determined that I must be a carrier for cystic fibrosis His words were there’s no way you have full cf because you’re healthy over 30 and haven’t had any issues So you’re probably just a carrier? so he had a basic genetic test done to determine if I was in fact a carrier and After about a week the tests came back, and it was confirmed that I did have one of the most common genetic mutations associated with Cf So he sent me to a genetic specialist, so I could learn what all that meant A Few days later I got a call from the cystic fibrosis clinic scheduled my appointment It was during that Call that I was told there was still a chance. I could have cf and then I may need undergo more testing and at the appointment the cf doctor explained that there are thousands of genetic mutations and That can cause cystic fibrosis and the genetic tests of the urologist ran only tested for 25 of the most common mutations The Cf doctor wanted to test me for the other possible mutations as well as in theirs administer a sweat test and a kidney ultrasound That meant more blood work and two of the most interesting lab experiences of my life But when I left the Cf clinic that day the nurse told me whatever you do do not Google cystic fibrosis Only look at the Cf foundation website for information, so of course I googled it before I had even left the parking lot That turned out to be a huge mistake because I got myself good and worked up and freaked out I went into all this thinking I was just a carrier and Now there’s a chance. I could have full on Cf This was the start of a pretty rough time for me emotionally Fear really took over my life there aren’t many people in my life that have a good understanding of Cystic Fibrosis and because I wanted to look strong another pressure I didn’t really talk about it, and that meant I really didn’t have a lot of support So this is where the story gets a little funny And first I’ll start with my kidney ultrasound this is what I call the the sexy ultrasound the purpose of this test was check and make sure I have two kidneys Only having one Kidney can sometimes be an unfortunate side effect so for that test They make you drink like 24 ounces of water before you go And you can’t go to the bathroom because that you have to have a full bladder for the test so of course I get to the lab and I need to pee worse than I’ve ever needed to pee before and after they made me wait for What seemed like 15 minutes, but was probably more like 2 minutes a nice nurse takes me back to a dimly lit room With the ultrasound equipment set up in the corner She points to a little room off to the side and tells me I can go Get undressed in there and hands me a gown to change into And my understanding of the human body is very basic But I know where my kidneys are or leah where they’re located, so I’m not real sure why I need to get undressed I’m thinking you you’re doing a kidney ultrasound could I just lift my the back of my shirt up you know but You know this lady the professional so I just kind of accept that she knows what she’s doing and I get changed into the gown and go sit on the table and the nurse pulls out her phone and turns on soft music and then Dims the lights a little more and I start to kind of you know. I’m like what’s going on here, so At this point. I start to fight back the thought that this is turning into an adult film and Just assume that she’s trying to make me comfortable he’s trying to make sure I’m comfortable for the you know for the ultrasound or whatever and uh She’s getting ready to get started, and I look towards her and say okay, we’re looking for two and she says testicles Contested what no kidneys. I had two testicles and Then we both stopped she gives me a little bit of a confused look and it starts shuffling through her papers It says um I’ll be right back you can go ahead and change back into your clothes so The rest of that story goes as it should I got the right ultrasound? finally got to pee and I do have two kidneys so that poor nurse was mortified when she came back and extremely apologetic evidently My ultrasound and someone else’s ultrasound information. God switch my name was on the file that someone else’s procedure was listed, so I’m Glad I kind of made that comment before we got started otherwise she would have been looking for my kidneys in the wrong place, so The next test was a sweat test This was not as funny so much as it was bizarre Just because of you know what had had to do so I had to go to children’s hospital in Downtown Dallas to have this done Because it’s not like blood work that you can do get done anywhere You have to go to a place that has the equipment to do this So this test measures the amount of salt chemicals in sweat, and it’s done to help diagnose cystic fibrosis Normally sweat on the skin surface contains very little sodium And chloride but people with cystic fibrosis have two to five times the normal amount of sodium and chloride and their sweat So they’re saltier than other people so If this test is conducted by applying a medicine that makes skin sweat to a spot on your wrist then electrodes are Hooked up to your wrist over the medicine A mild electric current is sent into your arm and the medicine makes you sweat in that spot Now that’s the web and b explanation, and that’s probably what happened to me But what I remember was being hooked up to what looked like a car battery with little jumper cables coming off of it and It was just like jumping off a car I’m pretty sure I’m not qualified to run this test on other people It would be but they even had little red and black cables and Electrodes little things I hooked to your arm are red and black just like they are on a car So anyway once the nurse took me up I? Asked her you know will is hurt because I’m Jimmy to a car battery so will this hurt and she said no But I won’t lie to you. It’s not going to be pleasant And at that point she flipped this switch like the mad scientist and every frankenstein movie. You’ve ever seen I May have heard her laugh a little So this part of the test went on for 10 long minutes in Each arm so they do one arm You have to wait you have to be electrocuted for 10 minutes And then they hook you up pick up your other arm, and then they do it again So I won’t lie to you. It wasn’t pleasant, but thanks to a little TV in the corner I was able to focus on something other than being electrocuted So after that part is done they wrap your wrist up with lots of gauze. I’m talking like Lots you have big noticeable Superhero Armband type amounts of gauze on and they’re on both wrists And then they send you back out into the waiting room Where you wait for 30 minutes while your wrists sweat underneath all that galls? And that’s really aren’t that bad Unless you’re a thirty year old man sitting in a room full of children Who are all waiting to have other tests done on them then it’s just a little bit awkward anyway Once your 30 minutes is up the gauze is removed. They take a little piece of gauze. That’s been absorbing your sweat They put it in a little capsule and it’s sent off to have the sodium and chloride measured and you go home and wait Depending on how salty the skin is the how salty the sweat has excuse me They’re able to turn determine whether or not you have cystic fibrosis About a week after all that I got a call from the cf doctor with the test results the sweat test is inconclusive So he wanted to run a full genetic test that would test all tests for all genetic mutations not just the 25 that the previous genetic tests tested for So I agreed and the next day. I had more blood drawn which was something. I was getting very used to at this point After about two weeks the Cf doctor called me again this time to tell me that they did in fact find a second mutation however this mutation was very rare and So rare in fact that he needed to consult with other physicians on how to move forward with my treatment Now about a week after that. I was back at the lab having more blood drawn giving a stool sample Getting a bone density scan and finally a chest ct All the test results came back normal for a regular 31 year old man There was a small amount of damage in one airway in my lung, but other than that Things look good the doctor told me that based on The test results and my personal history and the type of mutation pairing that I have he doesn’t expect he didn’t expect my cf to affect my VCF to affect my lifespan They gave me an albuterol inhaler With an acappella which is this device I? Blow into this and it vibrates my chest and which helps not lose any mucus That’s building up, so after I use the inhaler. I have to blow into this For about 20 minutes, and it’s supposed to loosen shake loose any mucus. That’s building up in my lungs that could lead to infection My other option is to run I use the inhaler and then I can go run For 20 minutes, so I try to run a couple miles after I use my inhaler Every day, and that’s supposed to work even better than this device, so I End up doing that more often than not because it’s good for everything. I’m running Since that time my life has changed somewhat because of my genetic mutation pairing is rare there isn’t a ton of information out there and If you remember I said my doctor wasn’t sure if I needed treatment or not So in my mind there’s lingering possibility that something could develop one day I’ve decided to treat myself. I’m maintaining a healthy lifestyle and really focusing on staying strong and fit So my body is in the best position to fight off any infections that may come along I Do this in addition to the inhaler and acapPella sessions that I do daily Emotionally, it’s depressing Again my cf isn’t bad So far. I haven’t been hospitalized. I don’t need to carry oxygen. I’ve lived a full life however those two letters Cf are always in the back of my mind Someone who’s been cured of cancer never really stops thinking about that cancer It may think below the surface of their mind for a period of time, but it always comes back up Now I have a son now, and I worry every time he coughs I know, they’re normal baby coughs but my mind makes them into something worse Sarah isn’t a carrier sister Fibrosis so at worse the worst Gabriel could just be a carrier Sarah and I both would need to have a genetic mutation in order for him to have full cystic fibrosis and that’s not the case, but I still worry about it and Also, you may not know this But cystic fibrosis is really a lonely disease see efforts can’t get together in person because of the immune system issues that Cf causes After I was diagnosed I wanted to meet other cf errs in my area and see what sort of support systems there were but sadly we Can’t have weekly meetings or anything like that and because we don’t always look sick or in my case. I rarely ever look sick People don’t consider us to actually be sick It’s hard for me personally because my friends and my family don’t think of me as sick So helping to raise awareness of this disease isn’t always at the forefront of their minds But I’ve connected with several see efforts through Social Media And were able to offer each other encouragement and Sarah really keeps not on me She can tell when it started to weigh on me And she’s good about helping me retreat from it and take my mind off of it for a little while Now that being said I have a family now, and I don’t take a single day for granted I’ve met a lot of awesome Cf Errs And they’re the most positive people you’ll ever meet even when they’re going through some truly hard times They haven’t had the opportunities that I’ve been blessed with and that keeps me grounded I don’t complain about the bloodwork And I try to find the humor and as many of the doctor visits and the tests that I can I’m not as bad off as some of my Cf friends but they keep smiling through it all and that pushes me to smile as well, and Because I’m capable of doing more. I owe it to them to help raise awareness about the disease I’m not asking for an ice bucket challenge or a 5k. I’m just asking that you remember cystic fibrosis If you know me that means you have a friend with a disease that doesn’t have a cure yet Now I would appreciate it If you would remember me as well as with thousands of others Cf is around the world from more information about cystic fibrosis you can visit the cystic fibrosis Foundation’s website at Cf f dot org On that site you can also find out ways to help raise awareness as well as money for research I Appreciate you watching this video, and I’ll see you next time. Thank you

Comments 7

  • Jacob, so sorry to hear you have CF. I love watching Mary and Peter on The Frey Life. They are a young Christian couple and she has CF – very positive and encouraging – thought you might want to check out their channel. I'm a friend of your Mom's from way back in her Kingsley, MI days.

  • Hey Jacob. Thanks so much for visiting our channel. Decided to check out your channel with you and your wife. This video also intrigues us. Like to know peoples story. What a journey you have been through. Look forward to getting to know you both and your son.

  • How old were you when you were diagnosed?

  • Thank you so much for sharing your story. I will be subscribing now & you maybe interesting in checking out another channel I follow with a young lady with CF. Her name is Mary & she & her hubby Peter have the channel "The Frey Life" here on YouTube. She's 27 years old. I think Peter may be turning 30 this year, but I'm not 100% sure. Mary is severely affected by her CF, which having CFS (chronic fatigue syndrome, also known as ME), POTS, chronic asthma, allergies, chronic migraines & other (mostly) less serious medical issues, I'm pretty much on the same level functioning wise as Mary. So she really helps me get through my chronic illnesses, even though they're different. Peter is a Pastor at a small congregational Church & also puts his sermons up on his other channel, "Peter Frey", also here on YouTube. They're such a fun couple. Mary has a cute poodle as a service dog & he's fun. Mary's sister also has CF & so sometimes she talks about growing up in a CF family, like she did in today's vlog. And your little boy may also like to watch Ollie, Mary's service dog. Apparently, a lot of kids like to watch their vlogs to see Ollie. Mary & Peter also do fund raising for CF Research occasionally on their channel. They also have fun merch that manly comes from Mary's artwork that she's done when she's in hospital. This video of yours popped up when I clicked on Mary's vlog for today & I had to check out your story. I also had a school friend with CF, who sadly passed away 11 years ago at the age of 27. Treatments weren't as good as they are now & she missed out on some really good treatments that would have made a huge difference to her.

  • You are very brave for sharing your story and bringing awareness about CF. This could not have been easy…. I have so much respect for you! You have a friend in me 🙂

  • Thanks making this video Jacob and further raising my awareness about CF.   You are the first CFer that I have learned about that was diagnosed well into adulthood.   You are truly blessed to only have a mild form of CF.  As I am sure that you know there are approx. 30k people living in the U.S. that have been diagnosed with cystic fibrosis…   Most CFers being diagnosed within the first two years of life. Learning about your diagnosis @ age 30 leads me to believe that there are more CFers in the world than 100k.   I added this video to the Claire Wineland Cystic Fibrosis Playlist on my youtube channel and shared it on twitter @afxm  BTW, I think that Gabriel wants a cap like yours. Take care Man.

  • This video was what made me following no matter how mild a chronic illness is it's hard to manage

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