M scared...!

[Abc91]

Hello..My Mom (48 years) had a stroke on Oct 30- 2018 on the right side of the brain and weakness on her left part of the body. By this time, Aspirin was started for her.

On Dec 25-2018, her haemoglobin was dropped down to6 and platelets Wer 33000. She got diagnosed with Deep Vein Thrombosis of right limb which was transformed into Pulmonary Embolism as she complained of Leg Pain. Treatment started was Low Molecular Heparin Injections for 5 days and Acitrom(4 mg) Tablets. INR was in the range 3-3.5. Haemoglobin restored was 9-10.5 and Platelets 2 Lakhs with a Progress of Partial Recanalization.

On January 25-2019, she had a clot in right limb but another location (second Deep Vein Thrombosis). Treatment was again the same-Low Molecular Heparin Injections for 5 days and Acitrom (4 mg) Tablets.

On February 6-2019, she suffered from Acute Chronic Subdural Hematoma (Brain Hemorrhage) in the left region, with the midline shift 13 mm towards right, Haemoglobin-5, INR more than 10. Treatment was Burr Hole Drainage of left FTP SDH along with FFP and Blood Transfusion. Acitrom and Aspirin stopped.

On February 9- 2019, she suffered from Acute Interior wall Myocardial Infarction. Treatment was- Coronary Intervention (POBA) to distal LAD, Aspirin started along with Acitrom (2mg). INR varying between 1-3 hence Acitrom given accordingly from 1mg-2mg.

On February 19-2019, she suffered from Hematuria. Treatment was- Blood Thinners were stopped, Plasma Transfusion was given.

On February 21-2019, she showed positive for APLA test. By this time also, she had clots present in Left leg as well. Treatment was- Plasma Transfusion was given, Clexane 0.6 mg Injections started twice a day (Continued till now) and Rituximab 500 ml given for 4 weeks, after that Rituximab stopped. Cryoprecipitate started, 4-6 units for every 21 days (Continued till now).

Now, 4 days before, Clexane Injections were stopped to check that whether any other anticoagulant in Tablet form could work for her. Hence, Rivaroxaban Tablets were given, 15 mg twice a day. But after 3 days(6 Tablets consumption), she again developed a fresh clot in brain and had a mild stroke on the right side of the brain, weakness on her left part of the body, again.

Right now, Those Tablets are no more given and Clexane Injections started because Doctor says this anticoagulant is working for her as she had no complications with Clexane. I guess, Rivaroxaban didn't work for her.

After this Fresh Stroke, she vomits everyday after consumption of Milk and Lentils diluted soup given through Riley's Tube. Doctor suspects Lactose Intolerance. Hence I have decided not to give her Milk and Lentils/Pulses soup from tomorrow.

She has Lost her memory since her Brain Hemorrhage( From 2 months) and is On Riley's Tube( Liquid Feeding Tube which goes through Nose to Stomach directly), On Diapers and Urinary Catheter, Bedridden, Speech Loss, Irritable( Screams, Weeps, Shouts a lot).

Progress: Clots from legs are resolving slowly (Doppler Scans), Midline Shift of Brain has become 5mm( MRI and CT Scans), Speaks very few irrelevant words, Walks 2-3 Footsteps, Bit Understands what we speak or try to express, Oral consumption of fruit juices and liquids ( 2-3 teaspoons).

From 5 months, Hospital has become my home. I and my family members are disturbed. Can't c her like this...

Will she ever recover? Recognize me?

When will she start performing her basic activities?

Could she possibly be suffering from Lactose Intolerance?

What possible other sort of tests could be done? For any sort of diagnosis and confirmation?

Please Reply. Will be grateful.

Thank-you...

[lupus-support1 Administrator]

I am very sorry to read this about your mother. I wish I could take away your pain and anxiety, but I don't know.

Although I don't know why, your mother's emotional outbursts mirror anyone who as lost physical functionality. Recovery will be a long process, as you already know; and you need a great deal of physical and emotional support.

There are support groups and I would urge you to consider talking to someone, outside of family and friends. Being with people who have shared experiences may be more helpful than HU.

With good wishes,

Ros

[Abc91 in reply to lupus-support1]

Yes, but Thank-you so much..😘

[MaryF Administrator]

HI, sorry things are very tough for you right now, firstly once your mother's anticoagulation is more stable things may settle down, we are not medically trained, and it would be unwise of me or us to give you advice on outcomes, however it is very important that you have a specialist who fully understands the condition, where are you located, as it sounds like you already have a good doctor who has worked out that that the injections are doing the trick currently. A lot do better on injections than the newer anticoagulants which are not always suitable for people with Hughes Syndrome/APS.

At the moment it is probably a case of watch and wait, it sounds as if some of the clots are dissolving. Do update us with new progress and hang on in there. MaryF

[Abc91 in reply to MaryF]

Sure Mam, Thank-you..This was unexpected to us so Hustle-Bustle..and anxiety and donno wt all...Right now, my priority is her cure....and Yes, she is bit improving...she is doing okay..

[MaryF Administrator in reply to Abc91]

And where are you located? MaryF

[Abc91 in reply to MaryF]

INDIA

[MaryF Administrator in reply to Abc91]

Here on our charity website, is a medical professor from your country, ghic.world/about-ghic/index... doctor.ndtv.com/expert/dr-a...

MaryF

[Abc91 in reply to MaryF]

Ohh, Thank-you so much Mam... It is a great Help..😘

[Scandal]

So sorry

[Abc91 in reply to Scandal]

😔

[Lure2]

Very Good! You have now got excellent help from several Administrators here!

You are doing a great job for your mother to find the Specialist she needs and the papers to read for the Doctors. I also sent you an answer to your PM to me.

It will be ok you will see.

Do not forget to take care of yourself also!

[Kerlampert]

Aloha from Hawaii. I feel sorry for you both and wish you the best.

We have experienced similar things in our journey through a medical crisis like this. It is unfamiliar and scary to you. It is familiar and reminiscent to me. I send you much aloha (Hawaiian for love and greetings)...

[Abc91 in reply to Kerlampert]

Ohh...Is everything settled now? How are the things going on? And Thank-you so much....! 😘

[Kerlampert]

Yes...thanks to many people who helped with medical info, lab tests, advice etc.

Keep strong and seek help whenever you can.

This site is a good place to go for support.

[hihannula]

I’m so sorry that your mom, you and your family are going through such a frightening and uncertain time. Try to keep strong and positive. You must take care of yourself as well. My prayers are with you and your mom..🙏🏻

[Abc91 in reply to hihannula]

Yes😔 but Thanks ..for the reply and concern....

[ndstephens49 in reply to Abc91]

I am so sorry you are dealing with all of this. Best of luck.

Nancy in West Virginia

[Abc91 in reply to ndstephens49]

Yes, Mam..Thank-you for the reply..

[Wittycjt]

That is a lot for anyone to go through both her and her/your family. I have had strokes, no bleed though... only time will tell how she will do. Try to remain calm. I know this is difficult because each time you think things are getting better something else has appeared and seemed to have caused additional problems. Try to stay positive. If you can remind her that the mind believes whatever you tell it....tell it positive healing things- you can help her with this... remind her she is loved, you will be here for her, tell her focus on getting well, all positive things.

Remember to do ROM= Range of Motion (google it, ask the nursing staff to show you) on joints so they do not become contracted and they will be pliable when she is able to use them all again. In fact that can be a “positive” you can say to her as you are doing it: “Mom, we are moving this joint to keep you in good shape for when your strength returns, dont lose faith Mom you can pull through this, you are a strong woman”, etc.

I know youre having a tough go of it, its hard to watch someone you love experience this. She seems to know some of what is going on. Talk with her but make sure you dont over stimulate as the brain needs its rest to recover. My heart is feeling for you. I wish you all the best. Do not lose courage and optimism, its still very early in her prognosis, surprising things can happen. Gentle hugs, Cindy in Delaware

[Abc91 in reply to Wittycjt]

Yes mam.... exactly...I am trying the same now...but physiotherapist said that she has developed spasticity for left hand as well as her left hand muscles are contracted... whenever v even try to touch/take her left hand, she starts weeping......weeps her heart out...in pain...nd u kno wt, whole hospital knows now, that what is my mom's name and which room number...

[Wittycjt in reply to Abc91]

Keep on trying different things.They may hear her but they then too know she is able to respond. What a shame-If it is bothering them. Youre doing something to try to help her. 😍🥰😍

[Abc91 in reply to Wittycjt]

Loads of hugs.... 😘😘