Elevated Factor VIII, Pulmonary Embolism, and DVT
Posted , 3 users are following.
In 2018 my husband was diagnosed with elevated Factor VIII. For 4 years prior he had an increasing cough and trouble breathing which doctors diagnosed as pneumonia. They ran every test except MRI and sonogram and said he was fine. So for 4 years he dealt with it, thinking it was a result from having had pneumonia, until one day he couldn't walk. His leg was swollen and numb, and he was short of breath, so he admitted himself to the ER where they ran extensive tests including a sonogram and MRI. As a result they found multiple blood clots in his lungs and a huge clot in his leg. His blood work showed elevated levels of Factor VIII. The doctors put him on Xeralto and he's been on it ever since. Now he seems okay. He occasionally clears his throat, especially in the evenings, but he denies it and says it's just scratchy. His doctor is not concerned.
My husband is 53. He's very fit, he surfs every day, and he is healthy. He's not a textbook case, which the doctors said is the reason it took so long to find the problem. My question is, why is his doctor refusing to do follow up testing? Not even one test since he was in the hospital in 2018. I keep asking for another MRI to make sure he doesn't have any more clotting, but the doctor says it isn't necessary, it isn't protocol. I asked for a referral to a specialist but the doctor said he spoke with them and they said there is nothing further they can do.
I would appreciate any input, and thank you in advance for your help.
0 likes, 2 replies
jen86183 MotherSunshine
Posted
MotherSunshine,
As you husband is on an anticoagulant and is very active there shouldn't be any reason for constant testing. The anticoagulant he is taking is making the blood flow around his body.
koalatypurple MotherSunshine
Posted
I think it's a spouse-thing .. I've been post-PE five years and my quality of life has never returned to my normal before PE. My husband thinks they should look at my lungs; however, when my breathing tests are okay and I'm on Xarelto .. they're not worried about a recurrence and see no reason to look at my lungs. I know it's hard to stand by ...