KatT's Journal

[jiml]

Hopefully it won't be as bad as you think, googling things can be very scary and not always helpful. I certainly hope your rheumatologist can put your mind at rest

[D Foster]

Yes KatT I agree with Jim, take care and I hope that you won't need to worry.

[KatT]

Thank you all!

Did stop reading about APS last night (causes, treatment, prognosis) as I  was panicking...

The problem today is that you need to look at your results to take action as sometimes the doctors don't mention anything about it..... it's a damned if you do, damned if you don't.

My appointment has been moved up twice....was that because of the results?  There's one test with more results that was sent to my rheumatologist but I can't view it until June    

Appointment is tomorrow....really looking forward to it!

Will post update

[Caroline]

Good luck

[Fred]

Good luck

[Forest Walker]

I hope your appointment goes well.  I hope there is a remedy for this, something to help.  Why give a blood test that has scary results if there is not some course to follow?  Surely, the doctor must have something planned to help you.  

You are right about having to advocate for yourself by learning what you can, even when it's something that is unsettling and frightening as this is.  I think Artemie's advice to find a break by doing something that makes you happy is really good advice.  I hope you can have a mental break from this worry.  (Not a mental breakdown, though   Keep your wits about you.  )

[KatT]

Thank you all!  Follow up to be posted later this evening 

Had a burnout/mental breakdown before....I won't go there again if possible.  Not a good experience 
I learned my lesson but that was work related.  

This is something else....but I won't break down.  Just learn to live with it....some people have it way worse unfortunately.

[Kat]

I'm late adding my well wishes.

I hope some of the news was encouraging.

[KatT]

Update on appointment with rheumatologist on May 16, 2022

This one is loooooooong...sorry and I won`t complain if you fall asleep reading it! 

My appointment was at 12h20 but the rheumatologist was about 1 and a half hour late.  I don`t mind because she takes her time with her patients

It was an appointment by phone.  She was on speaker phone and she has an accent therefore, it was sometimes difficult to hear her properly.


 I did not misinterpret, miss a piece of the puzzle.  I have APS syndrome....so on top of collecting medication, specialist, I have decided to add to my autoimmune collection as well!

There are three antiphospholipid antibody tests (IgA, IgG and IgM) that my rheumatologist ordered (amongst other tests), I was triple positive.

Antiphospholipid syndrome can be fatal.  Death may occur as a result of dangerous blood clots in the heart, lungs or brain that are caused by this syndrome.

There is:
primary APS where you are perfectly healthy and have no other issues
secondary APS mainly occurs in lupus
catastrophic APS is when you have multiple blood clots happening at the same time (50/50 chance of survival)

I am reading that **one third of cases of stroke in people under 50 years of age may be due to APS......I did ask if my heart attack could have been caused by this.  She said no buuuut everywhere I read, heart attacks can be one of the symptoms...That being said, there is no way for her to tell so I left it at that.

**be careful of the source...I know....this is taken from the NORD organization which is an international organization dedicated to individuals with rare diseases and committed to the identification, treatment and cure of the rare disorders

This is incurable of course.

Treatment (taken for your corner of the woods ...NHS) : low dose aspirin with blood thinners (the blood thinners are only if you have a blood clot episode)

My treatment:

I am currently on blood thinners and low dose aspirin due to my heart attack (there's other medication due to this also though).  My cardiologist prescribed the blood thinners for one year only to ensure the stents don`t get blocked and ensure good circulation to the heart.  My rheumatologist will not continue the blood thinner medication once it expires however, if I have clots that causes DVT, heart attack, pulmonary embolism, stroke AND I survive....I will be put on blood thinners for the rest of my life.  I assume they wait until you have clots because blood thinners come with their risks and side effects too...that`s the only explanation that makes sense.

Low dose aspirin will be forever.

If I travel (long trip) where I will be immobile for a long time, I need to take blood thinners which my rheumatologist will prescribe if required (she talked about Heparin)

If I am hospitalized let`s say for surgery where I have to stay in bed for more than 3 hours....I need to take blood thinners which my rheumatologist will prescribe if required

If I am hospitalized let`s say for an accident and in a coma ....well....I might be pushing daisies.  No tulips....nobody is going to tiptoe on my head!!!

Now what I need to watch for (keep in mind that I am very tolerant to pain and go see a doctor if it`s unbearable...I almost didn`t go to the hospital for my heart attack, the paramedics worked very hard to convince me to go and then almost left cause....I had to work....after spending the whole night awake):

1- pain in the legs could be due to DVT.  The pain I am experiencing now is due to the statin so I know how that feels
2- sudden difficulty to breathe...happened yesterday but it passed
3- chest pain
4- basically any abnormal pain

If I have issues (not on the verge of dying of course), I am to contact her office immediately by email and she will take whatever action is necessary.

Oh...did I mention this can also cause:

1- balance and mobility problems AND NO this was not what caused me to fall twice last December 
2- vision problems...already have that ....need to get my eyes checked on a yearly basis due to hydroxychloroquine
3- speech or memory problems....was attributing that to senior moments and getting older
4- tingling sensation in arms or leg....I don`t have that...only in hands and feet
5- fatigue.....I am always tired
6- repeated headache or migraines.....don`t have that
7- pregnancy problems....won`t happen again   
8- livedo reticularis which is a skin condition caused by small blood clots, may develop into ulcers and nodules.....I have enough with psoriasis thank you but NO

It is getting extremely difficult to determine which condition is in play when I experience aches, pains, etc  

Now we had discussed on my first appointment with her the possibility of stopping hydroxychloroquine which is 2 pills twice a day and increase MTX to 15 mg once a week WELL...that is no longer possible.  Now I am stuck with the hydroxychloroquine and an increased dose of MTX.

With all of that....I forgot to ask her about DMS    Next follow up appointment.

How am I feeling?  Still digesting the news....a bit numb... mind is reeling...still having some emotional panic moments (I blame the hormones for that one)....it`s like I have a sword hanging over my head that could drop at anytime.  I probably need to have serious conversations with my family (hubby knows) ....just in case...it is becoming more and more obvious that I will not have a normal lifespan.  I am not looking forward to this and may procrastinate until I have fully digested this and am ready to tell my family. This is though.  Am I being overdramatic?  

That being said, I keep repeating to myself there are a lot of people who are worse off than me and push through.....so I will keep on going and adapt.  One day at a time!  Go with the flow!!!

Now my flow is to go to bed and try to sleep!!!!  Good night everyone  

[Caroline]

Well that is quite a story KatT, I do have to digest everything you said also. And do some duckduckgoing also to get extra explanations.

There is a bloodthinner, called Apixaban (or Eliquis) that hardly does have any side effects, and seems to do a good job.

It is clear that you are not being the person who is following the classical fairy tale after having married the prince and live long and happily ever after…

Still there is a saying over here that says: Cracking cars will run the longest time.
So indeed I would not panic.
My other grandmother reached the age of 92 after having a life of illness.