Missing Blood Protein and Special Diet

Gillian

New member
Hi:

I am a new member here and I have a missing blood protein making my blood hypercoagulable. I have to limit vitamin K found in any leafy green vegetable. I have my INR tested every few weeks so I do not develop clots. I develop arterial clots that cause heart attacks, strokes and that cut off my circulation leaving me susceptible to losing major limbs. I had my first heart attack 6 years ago when I was quite svelte and I was forty. It happened right at my birthday party, but since I survived such a large clot hitting my coronary artery and hitting my lung, I will always think back on that time as my rebirth.

It set off many red flags to cardiologists and hematologists that I be genetically tested for protein s and c deficiencies. These are genetic and cannot manifest spontaneously -- one of my parents had to have the missing protein and sure enough, my mother also had the same thing but they did not know what to call these diseases at the time. My cholesterol was 160 at the time of the heart attack and it left me and the medical staff baffled. That was six years ago and I now eat the same amount of vitamin K every week so that my blood does not get too thick. I keep my INR (international ratio) between 2 and 3. Normal INR without drug therapy is between 1 and 2.

I have been taking Coumadin, Plavix, and an adult aspirin every day now for six years. The last clot I had was in my popliteal artery and was six inches long. I was in the hospital for two months in and out of the cath lab over and over in order to keep my right foot. New England Medical Center truly saved my life and diagnosed me. I stay on top of this genetic disorder so I can live a normal life. But, my vegetables are limited. I have found I can eat carrots, celery and any veggie that is not dark green like kale, broccoli, spinach, etc. Luckily, I can have a medium large serving of broccoli once a week to keep my blood from getting too thin from the blood thinners. It's a balancing act that I have grown accustomed to.

I wish I could indulge in more exciting foods, so I am looking at fruits as an alternative, but have never been big on fruits. One lucky thing for me is that I love avocados so much, and luckily they are not too high in vitamin K, so I really enjoy my favorite fruit; avocados! I find I get bored with some foods -- or should I say, diets. I want to lose thirty five pounds and even though I won't be thin, it is a goal I have set for myself.

When I joined on March 26th, I was 215 and now I am 211. I have been very cautious not to do a crash or fad diet. I also am limited physically after having five surgeries over the past two years. I had most of my C spine fused through laparoscopic surgery, and now I look like I have had my head removed and sewn back on! They went in through the front of my neck on two occasions and both surgeries were highly successful. I am still wearing a neck brace that comes off in June. I can never use my arms for moderate exercise. Then I had surgery to remove an ovarian tumor that got so big it was hitting my spine in my low back. Again I was lucky that I was only stage one ovarian cancer, which has a high success rate, but I tried walking on my treadmill and it is out of the question. I had such terrible pain that my oncologist put me on pain killers -- which I try and avoid taking as much as possible. I had hernia surgery four months ago because the tumor weakened my abdominal wall.

Now they want to do lumbar back surgery to try and correct the damage from three ruptured discs. The reason I am going into detail is because it really effects how much exercise I can do. I can only walk in the pool, and that does not burn too many calories. I have no way out but to stay on a diet and lose weight for pain control. I am 46 and have a strong marriage. I will get stronger over time, but I have to try and not do any damage to the implants and realize my limitations.

There is so much more going on medically that I just can't get into, but I have covered the stuff that really makes it hard to lose weight. I want to lose weight for my health. I hope to be inspired by being here and on my diet of moderation -- which seems to actually be working so far. I have gotten a lot of strength from other people and their stories. I know this is not going to be easy, but it won't be as hard as staying the way I am.

Thanks for reading,
-Gillian
 
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