Yesterday I received the lowest, or the lowest blows. We are talking gut wrenching, heart breaking reality. I was given the news yesterday that I had cystic fibrosis. Now you may be wondering " Am I missing something here, ? " Yes, six years ago I sat in front of one of the leading doctor's in cystic fibrosis care in Canada, while she explained to me" Genetically you have cystic fibrosis, but from a medical stand point, you are symptom free, and we will only monitor your care once a year for statistical purposes. Just for the benefit of clearing things up, to this date my lung function has been amazing, I had full pancreatic function, and besides having some bowel issues ( which only one doctor would admit it was a complication of cystic fibrosis) I was symptom free.So I had cf, but I didn't have cf. Year after year I would go to my cf clinic. I would do my bone density scan, fecal studies, blood work, x-rays, and my pulmonary function tests. All would come back wonderfully, with averages above average even for a "regular" woman of my age. I turned 39 this year, and my body started to fight me in so many functions. I noticed colds hung on longer, my bowels were too frequent ( 4-6 a day) and my belly pain was horrible. I started to pay more attention to my stomach ( besides the fact that it forced me to notice with the worshipping of the porcelain queen) I pretty well chalked this up to my body healing from gallbladder surgery and just being run down. At Annika's appointment last week I had advised the doctors to take extra care in washing their hands, as I have been fighting a cold for about 4 weeks. The whole family had it, and I joked that I am sure Annika will come down with something soon.
Well after all my yearly tests at London, I was ushered into a clinic room, the norm for my yearly clinic. The difference was I was feeling like crap. I couldn't get warm, and I just felt generally weak. I couldn't believe how this cold got the better of me. It was getting really frustrating from my point of view, and I voiced my concern to my nurse. Well after a kind, but stern tongue lashing, I was advised that from blood, xrays and PFT's, the evidence was there that I had a chest infection. I was also told my pancreatic function was gone, and this was the explanation for my bowel issues.
Do you know what a brick to the side of the head feels like.....I sure as hell do! My new doctor came in. A very kind gentleman that stated he understood that I have been told alot in the last few minutes, but from his point of view, I was full blow cystic fibrosis status......WHAT, WHAT, WHAT????? He wanted me to start seeing him every three months. The dietitian and the physiotherapist would be in to go over my care. They wanted a glucose tolerance test, because my blood showed CFRD. My first reaction to this was shock! All these years, and all the remarks from doctors stating this was just a formality, I wish all my cf patients were as easy to care for as you. So after a 5 hour appointment and a bag full of new prescriptions , I made the journey home to process everything with my family.
All these years, under the belief that I was one of the lucky ones. I was untouched from this silent stranger cf! I HATE CF! I HATE CF! I HATE CF!
All these years I have fought for my daughter's cure, my daughter's control, my daughter's future. Never knowing I was fighting for my own.
All these years of misleading me, of no treatment, of no physio!
So now my lung function is half of what it was 6 years ago. Now my pancreas doesn't work, now I have to do physio everyday like my child. I am sure there will be many that will read this and think " Welcome to my world!" but what they don't understand is I was told by many cf doctors, your mutation in little lung problems and full pancreatic function.
WTF?
I asked my doctor......why was I told this? Why was I given false information? Why?
I had access to a vest for the last 6 years, yet my old cf doctor told me there was no need. Proof was in the history....I went 33 years without knowing I had cf. Why should I change anything now.
The doctor replied" Your mutations are in the top 32 mutations tested for. From our research , less that .08% of people with cf have my genetic makeup. So that limits the doctors and their resources. Of those .08% of the cf population, I am one of the oldest with this makeup from what he can see. Most are infants or teenagers. Of all those with my mutation, none are showing any symptoms of cf. So I guess in a way I am a matriarch....lol. Oh lucky me! He then went on to say it is possible with these mutations, that cf doesn't present itself until a person's more mature years. I guess a way of saying I am old!
So basically he will use my information , to place in the cf data banks, so future cf patients with my mutation will receive preventative care. His fear is that in 6 years my lung function has decreased 50%, he doesn't want that trend to continue on. He doesn't want me on the transplant list in 6 years.
Annika was diagnosed, I went through all these. I know next comes depression, mourning what once was. But the best of all after all that comes the fight. The fight to prove all statistics wrong! This cf messed with the wrong bitch!
To all reading this, give me some time to process this, give my family time to process this. Thanks for your support. So now my silver lining is gone. Truth be told, I always had a thing for gold anyways~
