How FH Has Affected Four Generations of Our Family
When some people are first diagnosed with FH, they have a hard time believing that they must be on medication to ensure protection of their arteries. There are folks coming to FH groups in disbelief, asking “if I don’t take my statins, or some other therapy, will I really get a heart attack? Will I really get a stroke? Will I be young when these things might happen to me?” Wouldn’t it be nice to know these things regardless of our diagnoses? Life, unfortunately, doesn’t work this way.
I, for one, can only tell you what has happened to the people in my own family who lived with untreated FH. You can view this information however you choose. I am not making a case for medications one way or another, here. I am just sharing what we have been witnesses to as a family. From what I have learned in the past few years, the story of my family repeats, more or less, in every family touched by FH. So, I am adding my voice to the chorus of folks that speak from experience here, in hope that this will be helpful to putting things into perspective for some.
I’ll start by saying that I have seen FH in my family with my own eyes for four generations now. It started with my father’s father and it stops, for now, with my nephew who is almost 9. I have been the first one to be medicated for it, but I started treatment when I was 23. Because I have Homozygous FH, however, even with all the medication available, my numbers are still out of the normal range and you might as well consider me an unmedicated Heterozygous patient now. So, what happened to the generations before me?
I was 3 years old when my grandpa, my dad’s father, had his massive stroke. He was 53. Before then, he had a smaller one, about 4 years prior, before I was born. When he had his first stroke, they learned that it happened because of his cholesterol which was at that time in the lower to mid 300’s. His first stroke was not debilitating, but the second one was. At 53, he was left bedridden from this second stroke. Half of his body (I can’t remember whether it was the left or right) was paralyzed. He walked around the house with a cane, and he never left the home after that, till he died from his last stroke at 65. During the time he was sick, he had many mini-strokes. My grandma being a nurse provided around-the-clock care to him and brought him ‘back’, she used to say, ‘many times.’ By bringing him ‘back; she meant she was doing everything she could to exercise various parts of his body that were becoming weaker and weaker with every stroke.
During all these years that he was sick, his brothers and sisters kept getting older and sick, as well. Out of the 10 living siblings he had, he had 5 affected by FH. He was the sixth one. Out of the 9 people who have passed so far, four of them died from complications from FH (strokes and heart attacks) and two of them died from a combination of complications from FH and diabetes. All of them died in their 50’s and 60’s. For the most part, all their cholesterol levels were in the lower to mid – 300’s, so as far as we can suspect, they all had Heterozygous FH. Most of them, like my grandpa, were not overweight. Grandpa was this stringy man, about 6 feet tall and maybe 150 – 160 lbs. He had been a construction engineer and he spent all his life on construction sites. His specialty was mountain access roads, viaducts and tunnels. He loved the mountains and being outdoors. I learned from my dad that my dad’s grandfather, grandpa’s dad, also died in his early 60’s from a stroke.
My dad’s cholesterol has always been, as far as he can remember, in the upper 300’s and lower 400’s. Grandma, his mother, did not have high cholesterol at all.
My dad’s first signs that something was wrong was in his 20’s. He had heart palpitations, high blood pressure and very elevated liver enzymes. He was diagnosed with a fatty liver at that time and high blood pressure. He refused any kind of medication until he was in his 50’s. And even then, he only started taking medicine for his heart, never for cholesterol. Being of old school upbringing and in a country where little is talked about cholesterol and its management, he does not believe in any of the cholesterol lowering drugs we have available here.
10 years ago, the lower extremities of his legs turned pretty much black from poor circulation. He was 57. He went to see a vascular doctor who determined that his arterial peripheral circulation was extremely poor, and he should probably have surgery to insert stents in his legs to open up the arteries. At that time, his blood pressure was something like 200 over 150 – and it stayed this way till very recently. He chose not to have surgery because he didn’t feel like his heart was going to be able to take the anesthesia.
About 15 years or so ago he had a minor stroke. He had minor symptoms of a stroke and when he saw a neurologist they confirmed that he probably had a stroke. This year, he had a second one. He is 67 now. This time, he has little feeling in his arms and legs, barely feeling the pedals under his feet when he drives and not feeling too sure he can safely shift gears. He gets very dizzy and has fallen several times even when just walking around the house. He is very stubborn to press on and he drives the car in this state and moves about town although not daily anymore. He is taking new medication now for better circulation as well as for improved nerve function. His cholesterol was in the upper 300’s last time he checked, and his liver functions are very high.
Dad’s only sister’s cholesterol has always been in the upper 200’s and lower 300’s. She had stents inserted in her legs about 10 years ago and her lower circulation improved after that. She had a stroke three years ago, when she was 66 which visibly slowed her down.
Dad also has another cousin whose father was grandpa’s brother. She had a significant stroke when she was in her 40’s. Like grandpa, half of her body was paralyzed, but in her case only the upper part. Her legs are still mobile, but one of her arms, her neck and half of her face were very affected by the stroke. Like dad, she also has a fatty liver.
Weight does not seem to be a factor in this disease, at least not in my family. Dad used to be very skinny until way into his 40’s. Now, dad and his sister are overweight. But his cousin is a 5ft – 110 lbs. woman and has been even lighter in her younger years. As I mentioned, grandpa was never heavy. I knew two of his brothers affected by FH and one of them was skinnier than him.
As far as everyone has been told so far, all the events happened because of atherosclerosis caused by FH.
We did not find out for absolute sure that my mother also has FH until I was diagnosed with Heterozygous FH thanks to a genetic test at age 40. Her cholesterol has always been in mid to upper 200’s and she always compared her numbers to dad’s and mine and she decided hers are probably because of a poor diet. She was not overweight till she reached her late 50’s, so she never really looked into any medication for cholesterol. Thankfully, she has not had any events yet, but she does have a calcified aorta and aortic valve. She is taking a statin now with Ezetimibe to control her cholesterol. Because her mother did not have high cholesterol, we suspect that hers came from her father. He died when she was 7 from lung cancer and her mother never kept in touch with his family, so we don’t know what FH did on that side of the family.
My sister’s cholesterol is in the low to mid-200’s normally, but now she takes a statin and has brought it closer to the normal range. Her 9-year-old son has an LDL of 148 mg/dl with a total cholesterol of 223 mg/dl. They live in Canada and although they measure his cholesterol frequently, they don’t recommend that he should take a statin yet. We try to educate him as much as we can and even at 9, he reads labels and knows what foods are healthier to eat. Neither my sister nor my nephew is overweight and they are both extremely active. My sister is 40 and thankfully has had no events so far.
Another FH “marker” are xanthomas, but just like the varying weight, they are not 100% present in all of us. Grandpa, dad, mom and myself all have had xanthomas, but my aunt, my sister and my nephew do not.
You know my history, or can look it up on this blog to see when my complications appeared and what my levels are … All I can say is that complications from cholesterol do appear. That is a fact, as far as I can tell from my own experience and that of my own family. The ages at which some of them may appear may vary from one person to another. I do believe lifestyle has something to do with how well you manage those complications. I had a pretty massive surgery and an MI after that almost 4 years ago when I was 40. But I manage to stay pretty active after all that. I think a healthy diet and staying active helped me bounce back as much as possible (never fully) from all that.
If I could share a piece of advice at all, I would say: know your numbers and your heritage, learn from previous experiences and read the research and the testimonies. Always remember that there are not two people alike. So, whatever happens to one person might not happen to you. But I have found that learning from one another, from my family, and from the research available prepared me better for what did happen eventually. The rest is fate, luck, and the big unknown and there is a little bit of all of these in each one of us …
Stay healthy, you all! And make it a great Holiday Season!
This blog is reprinted with permission from A. Wilson. To view original post visit:
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About this Blog
This blog by A. Wilson follows her everyday journey of living with familial hypercholesterolemia (or FH). She shares her own persona experience with this inherited disorder, and how she manages it daily - from what literature she reads on the topic and what her doctors say to how she lives her life. This blog does not offer advice, in any way, to anyone suffering from this disease.