Followup on Factor Five Leyden (or Leiden) and No Pictures to Look At!

Had an uneventful and interesting visit with the hematologist today regarding my test results for heterozygous Factor Five Leyden which is a clotting disorder (more clots) of the veins. The biggest danger is pulmonary embolisms. I would usually say first the good news and then the bad news, but for me there is no bad news! As I have had no clots to date or any symptoms, there is no need for any kind of medication or even to watch what I am eating. The only advice was to make sure I keep the circulation going in my legs on long distance driving or flying, but that this was good advice for anyone as they get older! You don't even have to get up and walk around, just flexing the leg muscles especially in the calves will keep that blood moving.

Also my constant sewing on a sewing machine with a foot pedal has probably been giving me lots of the muscle flexing I need! I knew there was a medical reason I needed to keep quilting !

In passing, I mentioned my surprise that there was such a high percentage of people with British ancestry that were carriers of this gene and that I had wondered if there was any selective advantage (as in Darwinian natural selection which is one of the processes that filters our gene pool) for having this gene. The doctor indicated that there were some studies to suggest that it is a favorable gene to have during childbirth as there is some evidence that there is less bleeding. As childbirth bleeding was a major cause of death back in the "olden days" of gene pool cleansing, having a gene that kept you from bleeding to death and therefore providing more children was a good thing! Maybe that is why there were sooooo many children in my father's side of the family (families of 13-16 were common). Of course now that is not a concern and with clots not showing up until after childbearing age for the most part, it won't provide a disadvantage either. So those genes will continue to float around in the gene pool and generally only cause problems if combined with some other bad genes or if a child inherits the gene from both parents. I have always been a proponent of marrying someone of a very different ethnicity because of the problems with recessive genes popping up. Those recessive genes are generally the ones that cause problems if you get them from both parents!

Anyway, I will do more muscle flexing in my travels from now on! I of course continue with my Weight Watchers regimen (weight is not a good thing) and increasing my exercise levels.

Yes, I do have Factor Five Leyden and Day 2 of Raffle Quilt Adventures!

Well, after a week’s wait my tests came back for carrying the mutated gene for Factor Five Leyden. The doctor has recommended I see a hematologist at the University of Rochester to learn what I should or shouldn’t be doing! My sister (also a carrier) highly recommends that I take this step so will make an appointment when I get back from Lisa’s. I am heterozygous (one out of the two parents gave me the gene) which I had figured. I had recently read on one website that high blood pressure during pregnancy might be an indicator. That was the only thing that hinted to me that I might have the defective gene. Oh well, I feel worse for my girls who will now have to be tested as well. Most people never know they have this gene!

Day 2 of the raffle quilt assembly marathon is much more interesting! We had a relatively small group but one new face – Vickie Coykendall. She was a whiz at getting the pieces in the background together into rows! Poor Nancy Hicks came by just to pick up some small quilts from me for an exhibit case RAFA will be having at the Brighton Public Library and she got cajoled into taking out the paper from the back of the pieces (Jenna wasn’t there yesterday). We heard a lot of whining!! The paper isn’t so bad but many were made on this other foundation which was awful to get out! She left before we could find any more jobs for her to do!!

We made tremendous progress yesterday and Pat and Vickie worked effectively to make the 90 degree angle middle fit into the 60% angled background!! It was a challenge! Fortunately, we had decided the week before (thanks Jeanne Simpson) to only make the middle as part of the pattern set on a plain blue background. There is no way you could write instructions for what Pat and Vickie did!!

This is Pat and Vickie with some initial auditioning of the background and rearranging so that we could piece in straight rows.
Beverly Kondolf and Chris Wickert are also madly putting together background pieces. Pat Berardi and I were also madly putting these together and trying to keep Pat from the design wall!!
This is most of half of the quilt up on the design wall. You can see the progress along the edges where the background meets the center. We have one more sewing day scheduled next Monday and hope to have the whole background finished after that.
This is a closeup of one quarter of the background. You can see very little white space here as we made so much progress on sewing the background together. Thank goodness for multiple 8 foot design walls in Pat's studio/family room.

Factor Five Leyden - Do I Have it or Not?

Well, bet you have never heard of this one so I won't keep you in suspense. It is the name of a genetic mutation that occurs on one very specific gene and is present in about 5% of the general population although it is predominant in those of us with very English heritages. A week ago my sister wrote that she had two blood clots which precipitated another bout of her colitis (she had severe life threatening ulcerative colitis as a teenager). One of the clots was near her colon, the other her liver. After blood tests, they found that she was positive for this genetic mutation and that it was the cause of these blood clots. So she notified me so that I could get tested as well.

I head to the doctor's today to find if I have the mutated gene as well. It is inherited either from the mother or father (or both). If inherited from only one parent (heterozygous), then you will have an increased tendency to have blood clots although many people go through life with this gene and never know they have it. It makes birth control pills and hormone replacement therapy a very bad idea though. It can also cause some signficant problems with having children including stillbirths and miscarriages. If you get the gene from both parents (homozygous), you can have some very significant troubles and have about 500 fold risk of getting clots. If I do have the gene, then my girls will have to be tested as well. If not, well then the girls don't have to worry!

Just got back from the laboratory where I got my test so now just have to wait for the results. The doctor said that he had several patients with this and definitely I should have the lab tests. He said about half the patients were on Coumadin and the other half weren't. As I have had no clots (seems this gene causes clots in the veins rather than arteries where most strokes occur), I probably won't have to have a preventive therapy. I will have to be careful about sitting for long periods of time (like on an airplane or in a car). I guess there is some greater risk at high altitudes as well. He said it is just important to keep the blood moving! Fortunately my Internist also has a specialty in hematology so it was "one stop shopping".