“I began to experience severe exhaustion and a host of other symptoms that no one could explain.”
My name is Ceci and I have hemochromatosis. I live in the small community of Picadilly, New Brunswick – one might say a ‘suburb’ of Sussex.
When I was in my early 50s I began to experience severe exhaustion and a host of other symptoms that no one could explain. I felt like I had a case of mononucleosis and just wanted to go to bed and stay there. Since I’m normally the “energizer bunny” type of person, this was most unusual!
Eventually I went to my doctor and she suspected that I might be iron deficient. She sent me for a series of blood tests and called me back in when the results were received. She said she was very surprised to see that, rather than being iron deficient, I did, in fact, have an iron overload. My initial levels were in the 700s (ng/mL).
She explained that she thought I had hemochromatosis and told me about it. We agreed to have another blood sample tested for the mutated gene. Sure enough, that test confirmed her diagnosis.
She explained that, as a woman, I had ‘self-regulated’ my iron levels through menstruation. However, at age 42, due to cervical cancer, I had a hysterectomy so that method of self- regulation had stopped and the iron had been building up ever since.
I was referred to a hematologist in the nearby city of Saint John. Dr. Dornan was familiar with the condition and recommended prompt treatment to prevent any further organ damage.
The only available treatment was phlebotomy. I thought that blood-letting went out in the Middle Ages so imagine my shock when that was what was recommended to me. I dreaded the thought of having to drive into the city (almost an hour away) regularly for treatment but then I found out that it was available at our small local hospital through the IV Day Clinic. Armed with the physician’s letter I made an appointment for my first treatment.
Initially I had to go every week to get my iron levels down. At a certain point the phlebotomies were spread out to every two weeks, then once a month and eventually once every three months – a schedule I’ve maintained ever since for over 15 years.
When I saw the needle the nurse was going to use, my first thought was “it’s a syphon hose”. However, it wasn’t bad – just stung a little going in. For a long time that was the extent of the discomfort. I do find, now, that it seems to hurt more. I’ve had so many phlebotomies that the lovely fat vein in my left arm, that the nurses prefer to use, has developed significant scarring making it difficult to get the needle in. We’re working on that. But, it’s better than developing complications or dying unnecessarily prematurely!
I have a son and as soon as I was diagnosed I asked that he, his wife (who is of Norwegian descent) and their two children get tested. David is a carrier, but his wife is not (thank goodness) so the kids are fine.
My birth mother passed away recently. When I was diagnosed I asked her if other family members had hemochromatosis. She said that several cousins had been diagnosed, but none of my other nine siblings had it. Interesting. Of course, as the eldest, and the one given up for adoption, I had a different father than my half-sisters and brothers. I was the ‘lucky’ one for whom both biological parents were carriers, I guess. I don’t know who my biological father was so I am not able to contact that family. I do know that his background is French and my mother’s family originally came from Wales.
My on-going treatment is monitored by both my family doctor and the specialist, although he is near retirement and a replacement hasn’t been named yet. I gather information from the Canadian Hemochromatosis Society, other volunteers and reputable patient groups and pass it on to my GP to keep him up to date as much as possible. Just in my neighbourhood alone there are three people on my street with hemochromatosis, myself and a man and his son across the street.
Both my husband and I can tell when it’s time for a phlebotomy. I start getting very tired and that increases regularly leading up to a treatment. Once a treatment is done, within about 48 hours I start to feel much better and more energetic. That lasts about two months and then the cycle of exhaustion begins again. We try to maintain my levels between 50-100 ng/mL on-going.
Although I am now in my late 60s I am still very active. I am a professional writer / photographer and not willing to put down my creative tools yet, if ever. I have had to adapt my schedule and commitments to my condition, since the exhaustion is also exacerbated a bit by my age. But, life goes on, and so do I.