What can I expect with Antiphospholipid Syndrome (APS)?

My 67 yr old, healthy husband has been hospitalized 5 times since Aug 31. He had been experiencing extreme fatigue. A MRI uncovered multiple acute & sub-acute strokes, PE's, a DVT and many clots in his arms. After going down multiple rabbit holes, being on Eliquis first - second stroke - changed to coumadin - third stroke - coumadin + aspirin - 4th stroke - most recently tiny stroke due to HBP. He was put on Lovenox in November and it seems to be helping keep the clots at bay. His extreme fatigue is still present. Anyone else have this experience of extreme fatigue?

My husband has had three strokes ! Is on a walker ! He lost sight in left eye with second stroke ! Third stroke ! Affected his legs! Was in rehab for a month ! Learning to walk ! Has home health care ! PT for almost two years ! His legs still not much better! And he has no stamina , he complains of fatigue ! His age also
Has a lot to do with his condition! His vitals are excellent ! He has a ICD! Takes one RX ! For his heart , And two RX for his type two diabetic condition ! Sits in his chair most of the day ! Except trips to the bathroom
! He is also on oxygen ! Day and night ! Is always fatigued ! He is 87

Hello! I am a 34 year old female. My story starts in November of 2022. I had underwent a right shoulder arthroscopy due to what was thought to be a rotator cuff tear resulting from a COVID-19 vaccine. The surgery itself went as planned, however about 1 week later I developed pain in my left calf and was then diagnosed with a DVT and placed on Eliquis. Puzzled as to why a low risk patient developed the DVT, I was referred to a local hematologist who ran a series of blood tests. He called me on a Saturday morning to inform me that I need to switch from Eliquis to warfarin, and that I have antiphospholipid syndrome and lupus. I have other symptoms that may be related. My family doctor said I do not have lupus. When I asked the hematologist who will manage the lupus, he said he would, however when I have asked questions on how it will be managed, he would not answer this. He is a nice provider, but should I seek out a rheumatologist for second opinion? Researching these conditions on my own is overwhelming, as well as trying to recover from the surgery, adapt to warfarin and monitoring, as I was told ill be on it for life. I feel exhausted, depressed, anxious, and worry that I will be a burden on my family. I appreciate any input or advice.

Absolutely get in to see a Rheumatologist, autoimmune is their area of expertise!
Go online to a teaching hospital website near you and read the bios of the MD’s, get the MD with the most experience AND good ratings.
And most of all, you will be okay on your own! if your family isn’t supportive find that one friend who is there for you.❤️

Thank you for the reply! I just felt guilty going to find a rheumatologist and did not want to step on the hematologist's toes! My husband and kids have been amazing! I am not sure what I would do without them! I just want answers, and to feel better!

Please don't feel guilty about finding the best care for your conditions. A Rheumatologist is definitely a doctor to handle your autoimmune conditions. As I tell folk from experience, your doctors work for you. If they insist in sticking you in a 20 minute time slot for insurance purposes, if they talk over your head without explanations or talk around you to your hubby or ignore your questions and concerns, find another one.

Hello! I am a 34 year old female. My story starts in November of 2022. I had underwent a right shoulder arthroscopy due to what was thought to be a rotator cuff tear resulting from a COVID-19 vaccine. The surgery itself went as planned, however about 1 week later I developed pain in my left calf and was then diagnosed with a DVT and placed on Eliquis. Puzzled as to why a low risk patient developed the DVT, I was referred to a local hematologist who ran a series of blood tests. He called me on a Saturday morning to inform me that I need to switch from Eliquis to warfarin, and that I have antiphospholipid syndrome and lupus. I have other symptoms that may be related. My family doctor said I do not have lupus. When I asked the hematologist who will manage the lupus, he said he would, however when I have asked questions on how it will be managed, he would not answer this. He is a nice provider, but should I seek out a rheumatologist for second opinion? Researching these conditions on my own is overwhelming, as well as trying to recover from the surgery, adapt to warfarin and monitoring, as I was told ill be on it for life. I feel exhausted, depressed, anxious, and worry that I will be a burden on my family. I appreciate any input or advice.

Agree with everybody above don't stop till you get the answer, my daughter went thru the same process of finding the correct Dr. For her autoimmune disease. It just happened to be a immunologist. Keep pushing and best of luck.

Hello! I am a 34 year old female. My story starts in November of 2022. I had underwent a right shoulder arthroscopy due to what was thought to be a rotator cuff tear resulting from a COVID-19 vaccine. The surgery itself went as planned, however about 1 week later I developed pain in my left calf and was then diagnosed with a DVT and placed on Eliquis. Puzzled as to why a low risk patient developed the DVT, I was referred to a local hematologist who ran a series of blood tests. He called me on a Saturday morning to inform me that I need to switch from Eliquis to warfarin, and that I have antiphospholipid syndrome and lupus. I have other symptoms that may be related. My family doctor said I do not have lupus. When I asked the hematologist who will manage the lupus, he said he would, however when I have asked questions on how it will be managed, he would not answer this. He is a nice provider, but should I seek out a rheumatologist for second opinion? Researching these conditions on my own is overwhelming, as well as trying to recover from the surgery, adapt to warfarin and monitoring, as I was told ill be on it for life. I feel exhausted, depressed, anxious, and worry that I will be a burden on my family. I appreciate any input or advice.