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Thu, Jan 17 10:08pm · Familial hypercholesterolemia in Heart & Blood Health

Single gene? I’m HeFH with APOB defect. Does he have to be careful about when to exercise or is it a matter of just when he feels good enough to? I’m concerned about my grandkids and not getting my kids to address it. Are your grandkids treating? I have nieces and nephews that have to have it. No one but me has confirmed it.

Thu, Jan 17 6:32pm · Familial hypercholesterolemia in Heart & Blood Health

Great to connect with you. I had my first run yesterday. It’s going to be a lot more than I realized and I’m overwhelmed. How long has he been doing it? I found out my small veins will be a challenge so I’m interested to learn from others what they do, if anything to make that part of it easier.

Sun, Jan 13 6:57pm · Familial hypercholesterolemia in Heart & Blood Health

They say each “run” will be 2-3 hours. The first will be 3 because they start slow. The plan is every two weeks indefinitely. They will want to see how long it takes my body to replace what is removed. I think I’ve read it takes a body anywhere between 4 days to 4 weeks. Yes, I hope other commenters come back here. Thank you, Colleen.

Sat, Jan 12 8:19pm · Familial hypercholesterolemia in Heart & Blood Health

Hello! I would love to connect with others that have familial hypercholesterolemia and/or recieve apheresis treatments. I have an APOB gene defect that has caused premature cardiovascular disease, FH confirmed by genetic testing and a heart cath last year at age 52. I have always had high cholesterol and my doctors flipped a switch to be aggressive to treat it once new drug options (PCSK9 inhibitors) became available. I have since run through all medical options and currently am not treating. My highest untreated LDL has been around 300. I am scheduled to begin LDL apheresis next week. I’ve had such wonderful care at Mayo since 2006 figuring this out and I am so thankful for everyone that has been a part of my care team there. It is not practical to drive to Mayo every other week for treatment so I was referred to a clinic closer to me. I am told that apheresis not only reduces cardiac crisis risk but will also reduce fatigue and stress on my body that I haven’t really recognized since it’s been with me since before birth. My struggle is to manage progression of buildup in my arteries while I maintain my mental health and remain active. It has been super isolating and has included working through a fibromyalgia diagnosis as part of this. My hope is apheresis will be a magic bullet for me.

Jul 4, 2018 · High Calcium Score and PCSK9 in Heart & Blood Health

Yes! Thank you getting thisnarrowed down . It's https://connect.mayoclinic.org/webinar/video-qs-heart-health/ specifically at 23:00 minutes begins discussion about calcium testing then specifically about retesting is at 26:20 into the video.

Jul 4, 2018 · High Calcium Score and PCSK9 in Heart & Blood Health

A recent Q&A online by Mayo cardiologists addressed repeat calcium tests. Maybe a moderator can find a link to a recording of it. I recall them saying there is no value to repeating. It is the unstable plaque that we treat and the calcium test measures stable, or calcified plaque. The goal of the drugs we take is to stabilize the bad stuff moving through our arteries so the calcification can actually increase as that happens, or at least that is my understanding.

Jun 11, 2018 · High Calcium Score and PCSK9 in Heart & Blood Health

Hello there! My initial calcium score was 400 last year and I have had extremely high cholesterol at least since my 20’s when it was first checked. I started a statin at age 28. I am 52 now. It is super important to develop a relationship with a doctor who can help you. The keys are for you to understand what is happening and to develop a personalized treatment. There is so much good and also bad information available for us to access. It is a silent killer that creeps up on us meaning we have to be diligent to address it, and sooner than later. On the flip side, we are extremely fortunate to have the opportunity to address it super early, unlike so many other diseases. Knowledge is critical to our anxiety level and treatment! Hope I am encouraging you and not scaring you. 🙂

May 23, 2018 · High Calcium Score and PCSK9 in Heart & Blood Health

It really is well tolerated and no down side in trying. It’s expensive but do not let that stop you. There are options that open up as you go through the process. It’s a process to get approved and I would recommend going down that path ASAP. You always can say no at any step. Your life is worth the immediate priority to commit to the process.