Having a bad day

[Vmarti]

This is my third post in this group and I’m hoping to get some positive testimonials from long term APS patients.

I’m 38, my partial diagnosis started a month ago when I was hospitalized with bilateral PEs. My first round of tested showed triple positive. Unsure what that means still. Went home from hospital after a week of being treated with heparin and eliquis with an INR of 1.4.

I continued eliquis for a month before my Pulmonologist moved me to warfarin. I was on warfarin for 3 days when I was back in the hospital with a few new PEs. Although these new PEs weren’t straining my breathing or my heart, I still feel like they’re such a huge set back.

I know this post sounds like a repeat of my last but I’m just having a bad day, I guess. I don’t know who to vent to or ask for help. I don’t have people who can reassure me that my life will still be worth living with this disease. I have 3 babies, 2 of them are 11 and 4. Will they have to watch their mom die? Am I going to be a burden always in and out of the hospital.

I’m just having a really really bad day

[Star13]

Im really sorry you are having a bad day and that you are having these feelings which I must add is only natural. You have had a really bad shock and now every single twinge makes you worry that you are going to have a set back - we have all been through that so stop beating yourself up. And by the way this is the safe space for you to come and have a moan because we have all done it.

I know it does not seem so at the moment but things will settle down. You will learn how to cope with this condition as we all have done. Its important to have a medical team around you that you trust too which will give you confidence in what they tell you.

By the way, being triple positive just means you have tested positive to all three of the APS antibodies that's all.

Have you heard of Dr Jason Knight Michigan Medicine APS Program - he has a very good web sight and sends out a newsletter every month that you can sign up to.

medicine.umich.edu/dept/int...

Please go and enjoy your lovely babies and try not to worry too much. 🤗

[KerryA]

I agree with Star13

Ask your medical team to help you to get into you INR range and be tested enough to make sure you stay within range as much as possible.

You will gradually get used to the testing and know your symptoms (if any) and how to manage your condition and be able to live a near normal life.

If you become ill in any way, like a cold or flu, get your INR checked as things like that can change your INR for a short while.

I've been living with APS for over 30 years and was able to do an active job and have active hobbies etc.

Enjoy your children. Your life is certainly worth living, so don't ever give in.

[MaryF Administrator]

I think over time you will become more stable with this, you have a great consultant who knows what to do, we have all felt like you at one stage or another, I had lots of clots during my first pregnancy which were very worrying at the time as I was only 23. Do make sure your Thyroid and B12 levels are kept an eye on, alongside D, Folate etc, as if any of those are out of kilter it can make you worse. It is worse not to have a diagnosis than to have one, many on here have struggled for years to get diagnosed, it is safer that you have a diagnosis and you are medicated, however you need time to come to terms with it, do ask you GP if there is any counselling around you can access if you feel very bad. Best wishes to you. MaryF