Blood clot disorders: How does this affect your quality of life?

Please, please make an appointment with a hematologist as soon as possible. Three blood clotting disorders require medical treatment. None of us on this forum are able to address how your quality of life can be affected by having three untreated illnesses, but in my opinion you are taking a great risk by continuing to go untreated.

Hello @yvonnekim, Welcome to Connect. I’m going to echo @debhammel and suggest you get to a hematologist or even your primary care provider if you need a referral first to get the ball rolling on keeping you safe and healthy. Having a blood clotting disorder sets you up for potentially life threatening events such as strokes, blood clots in the lungs, deep vein clots, etc.. Any of those events could severely affect the quality of your life. There are medications which can help prevent these conditions.

May I ask how you know you have three blood clotting disorders?

I was diagnosed by an oncologist. I know one is called factor 5 legency I’m not sure what the other 2 are called up in covid I was on blood thinners a shot 2 times a day in stomach I also was getting DVT and had them move to my lungs a couple times

Yvonne, If you haven’t returned to your oncologist or you are no longer on blood thinners since Covid began in 2020, I really urge you to see that doctor or at least your primary care physician very soon. You could be in great risk for the return of DVTs with catastrophic side effects!

Factor V Leiden is an inherited genetic blood clotting disorder where the patient tends to form abnormal blood clots. From my understanding not everyone with Factor V Leiden will have symptoms. But if they have a history of clotting their doctors will prescribe blood thinners to prevent potential life threatening clots. Considering you have an history of DVTs and also have 2 other related clotting disorders, these really do need to be taken very seriously.
Here’s a little information to help you better understand your blood disorders:
https://www.mayoclinic.org/diseases-conditions/factor-v-leiden/symptoms-causes/syc-20372423

There are discussions in Connect with members such as @patientk @piglit @sherohio @susangourdlady @mlemieux and others who have written about living with factor V leiden and related mutations.
Anybody Else have Factor V Leiden?
https://connect.mayoclinic.org/discussion/anybody-else-have-factor-2-and-factor-v-leiden/

Are you on any blood thinners now?

I am still on Xarelto, although at 10mgs instead of 20. I am also still on Plavix. Medication for pain is a problem for me because I can't take NSAIDs. I have, and have ended up with blood in the toilet....

I have a very involved degenerative disk disease in the lumbar spine with scoliosis. The neurosurgeon I saw said the 6-7 hour surger would be too much for me since I have Factor V Leiden and I am 73 and have a moderate kidney disfunction. He is sending me to a radiologist who administers epidural steroid shots and I will get 3 of them at L1/L2, L3/L4 and L5/S1. This will be scheduled once the radiologist has contacted my hematologist to discuss a bridge plan. I also have severe osteoarthritis in both knees and the orthopedic surgeon would not do surgery...on and on. So I do have quite a bit of pain. I am in the process of getting off- loading knee braces and that may help. I had ablations for both knees, but the pain relief does not last very long for me at all.

I no longer experience my femoral artery disaster as PTSD. My husband was wonderful with me by listening patiently and reviewing what happened to me. So that was great!

No I’m not on any medication I also have thyroid issues narcolepsy and cataplexy. I am going to make an appointment to get back on all meds and be under the care of a Dr again.My medical care takes up more time than a full time job it’s very difficult to do with the narcolepsy.

And I’m in menopause I’m don’t think you can take medication for that with the clotting disorders

I think that’s a really good plan, to get back to your doctor for a good overall review of your current health and where to go from there with a treatment plan.
Do you have someone to accompany you to appointments to make it a little easier for you?

Susangourdlady, the epidural steroid injections should help a great deal so relief should be coming! As for your knees, has the orthopedic surgeon discussed the possibility of hyaluronic acid gel injections into the knee joints? These can provide some relief for awhile when knee surgery is not possible. I believe they are safe when on xarelto. I would ask your Dr about them.

I think it is quite interesting that many blood disorders seem to be somewhat discovered by accident with no symptoms shown. It might be a good idea that people voice on how their condition(s) have been discovered and how long ago.