My DGD and unexpected blood clotting disorder

[Mrs.Milo]

Last June my DGD graduated, and 2 weeks later came for a visit with siblings here in the Orlando area. She hadn't felt well for several months, and then had trouble keeping up with her younger siblings while at the parks. Her leg hurt and she was short of breath doing even minor tasks. She also had a bout with throwing up, so thought maybe a virus. She returned home to Dallas after 2 weeks, and within a few days got much worse as her left leg turned purple and was in severe pain. A visit to the first available doctor's office, and she referred her immediately to the ER as she suspected infection or blood clots.

There the ER doctor ran several tests and discovered that she had DVT in her left leg, and clots in her lungs. She was admitted to ICU and had her first surgery the next morning, and they inserted an IVC filter to catch the clots. I got a text the next morning and was shocked. Unknown to us, there was a family blood clotting disorder called Factor 5 Leiden. I flew in Saturday morning, and her 2nd surgery was Sunday. The surgery again was to open her veins and filter her blood to catch the clots. They were unable to get them all still and did a 3rd surgery Tuesday. There were problems with her surgery because of her age and reaction to anesthetic to keep her calm for the procedures, but she did great and was a trooper.

When I told family about Caitlyn's struggles, I found out I have a niece that had a similar situation years ago and at that time learned about Factor 5 Leiden (F5L). I had known that my paternal grandmother died of a blood clot in her lungs at 62, and my sister had DVT in her leg after a long airplane flight. I had no clue that this could all be related and that I could pass this on to my daughter or her family. I've read everything I can find online about F5L, and the chance of developing a DVT is 2 to 5 percent over a lifetime. I would encourage anyone with a family history of blood clots to be tested for a clotting factor disorder. Many have the DNA for it but never develop it. Before having any hormonal/estrogen treatments which can increase chances of a problem, check with your doctor.

Caitlyn visited this month and is doing much better. Just wanted to post this as a caution. No flames please. Thanks for reading.

 

[katie01]

I'm so glad your granddaughter is ok! It's very good that they found it, now she can be treated and hopefully not have further problems. One thing she should know if the doctors haven't already brought it up, is never to take hormonal birth control pills, as that will greatly increase her risk of a stroke or another blood clot. Also, they can treat her with blood thinners if she ever decides to have children. I have a different medical issue that causes potential blood clots, so I injected myself with a blood thinner with one of my pregnancies (I found out after having our DS that I had the issue). Best of luck to her and good health!

 

[Pea-n-Me]

I hope your grandaughter is doing better soon.
We see these cases in the hospital all the time.

 

[3smithboys]

I’m so glad she’s ok! We have 2 blood clotting disorders in our family and found out about them when my son was an infant. He was really sick in the NICU and kept clotting off his lines. We never knew that our family had this disorder. My sister also has the two plus the same one your granddaughter has and had to take shots during both of her pregnancies.

 

[bushdianee]

Glad to hear your DGD is doing well. My family also has F5L, it was discovered in my niece during her pregnancy and treatment for thyroid cancer. Luckily she is now fine. I have 7 siblings and half of us are negative and half positive for it. We think it comes from my dad but he was already gone by the time it was diagnosed. He'd had a DVT the doctors didn't tst my mom as she was on blood thinners at the time. None of his siblings are known to have it but he never knew who his biological father was so we figure it came from him. Ironically of the 4 siblings who do not have it 3 of us have had blood clots. I had multiple pulmonary embolisms in both lungs, a brother has had several superficial clots on his legs and a sister had a clot in her arm. A sister who is positive has had some minor ones but none of the others have. I have 2 brothers who are twins one was positive and one negative.

 

[BLAZEY]

Glad to hear you DGD is doing well after her lengthy stay in hospital. A co-worker of mine has Factor 5 L as well, found out she had while pregnant with her daughter. She was told to avoid pregnancy again as it could be very dangerous for her and the baby. She does have 2 other "step" kids that she raised as her own. She still had issues but works hard to prevent symptoms and get to the doctor at fist sign.

 

[Dan Murphy]

Good to hear your granddaughter is now doing well, Mrs. Milo. s And thanks for the heads up for others.

 

[cvjw]

Factor 5 also runs in my husbands family. It was discovered when his sister almost died of a blood clot after a routine surgery. Scary stuff. All the females in the family tested positive for it. Only 1 male has tested positive.

Sister with blood clots had to take anti clotting medicine for years.

Younger female was advised no birth control pills, as they can exasperate the situation.

Glad you figured out what was wrong with your grand daughter in time. Knowledge is power in this situation. You will know what to look for going forward and how to manage the situation.

 

[NotUrsula]

FYI, F5L is also sometimes a factor in infertility. It can cause repeated early miscarriages (the technical term for which is chronic abortion). It tends to be the first thing that will be looked for when someone loses at least 3 pregnancies in the first trimester.

 

[Pooh2]

Our friend has Factor 5 Leiden and did not know until she threw a blood clot to the lung at age 18.
Glad your grand daughter is okay and now knows what to watch for.

 

[Kitty 34]

So glad to hear everything is now OK with your granddaughter. What a scare that would be.

 

[portocall]

My husband had DVT and a pulmonary embolism that landed him into the ICU last summer. Scary stuff. I had a blood clotting disorder found during my last pregnancy and I had to give myself shots everyday. Glad she is on the mend and you have answers.

 

[apirateslifeforme]

In September 2003, at age 49, my mother developed a DVT in her leg and a PE. Her lower leg turned bright red, was swollen and hot to the touch, and she could barely walk. She spent a week in the hospital on a heparin drip. It was then that she was tested and learned she had the F5L gene. We don't know which parent she got it from; Grandpa had already passed and Gram didn't get tested. I think 2 of my 3 uncles then were tested and are negative. I had to beg to be tested; no doctor wanted to test "until there's a reason" (Really???) I did come out negative, but I was told that there are other clotting genes out there and I was not tested for any of those. Because of that, when I spent 3 years taking IVF meds, my RE was on high alert and constantly checked me out for clots. Now, 4 years after having my son, I find that I need HRT and my GYN has balked at it because my insurance won't pay for testing for any other clotting genes unless I "have a reason."

A little over a month ago, my mom drove from CT to IL and back. She does the drive in one day, about 14-15 hours straight through. She was fine on the way out, but 2 days after she got home, she started having a pain in her leg. Same leg as previously. My first thought was that it was another blood clot, but she pooh-poohed that. She tried having cortisone shots that did nothing. Finally last week, she went to her doctor, who ordered an ultrasound, and guess what? There is indeed a clot there! But they said it could be the old clot; apparently it doesn't break up, but scar tissue forms around it to keep it from moving. She is now on Eliquis (probably for life) and while she can feel a "pulling," she is walking normally again.

Scary stuff. Glad DGD has some answers!

 

[ahutton]

After DDs hospital visit, I paid to have myself and her siblings tested; insurance rejected the testing as unnecessary. I argued that since DD2 was taking birth control pills (for her cycle issues) that is WAS necessary but in the end I had to pay. Well worth it to know that she did not inherit the trait!