Hello All,

thank you for reading this.

I need help with my mother whom recently had a pulmonary embolism.

She has a hypo-thyroid, and this makes her cold and lethargic.

She also has an IVC filter.

She just started her treatment of blood thinners, and will remain on this med for 1-3 months, with a checkup every month.

My brother and I will be confining her to our downstairs living room. We do not want to risk her falling, going up and down the stairs to her room.

As this embolism, and IVC, has caused her to be short of breath.

We have bought towels, a bucket, and sponge for her to take a sponge bath.

We are unsure as to what to feed her.

We have been told that she should be on a vegetarian/vegan overlapping diet. I just read that we must watch her Vit K intake. I think it said 70 - 90 mcg daily. Also, consistency is key. Her doctor did not tell us this. And so, here I am trying to get as much information as possible.

We want her to remain mobile, but not worked to exhaustion.

We have decided to help her with movements. Help her do bicycle movements with her legs. Help her rotate her arms. And help her walk around the sofa, maybe once or twice every 60-90 min. Her IVC goes down her neck, so we are afraid of what we can do.

She will be having a physical therapist come by to help with movement. My brother and I will be watching and taking notes, to continue this with her when her therapist is not there. We will not overwork her. We will follow the therapist's, and doctor's orders.

Please help us.

I was told to get some gels and powders to apply to cuts if it happens. Does anyone know of any, and where to get them? Medical supply store? Or just CVS?

I am researching as much as possible, but this just hit us 2 days ago, and now she will be coming home tomorrow, and life has/will changed drastically for us/her, for the next 1-3 months.

Also, we do not want her to get excited, or stressed. So we will cut out the news, jokes, arguments, laughing, and anything that can cause excitement.

Any ideas for activities for these next months will be greatly appreciated. She is aware of her upcoming lifestyle change for the next 1-3 months.

She is an avid reader, so I'm hoping my book collection will help, but it will not suffice alone.

Thank you for reading this, any help is greatly appreciated.

Please, and thank you.


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SoulReaver, another thought and reminder from the Pharmacists at the Anti-Coag Center where we got testing:   Different brands from different manufacturers of Warfarin or Coumadin may vary in affect, i.e., some brands can increase or decrease blood values.   

We experienced this when testing was in range at a rehab but not when my father returned home.  So I began monitoring different manufacturer's products.  I found (several years ago) that Teva, an Israeli product, was the most stable anticoagulant available to us.
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OK, since she's only 70 years old there is no reason to assume she can't make a complete recovery I can't see any reason to wrap her up in cotton wool for the foreseeable future. I get that you're scared, but IMO your plans to restrict her ability to move about the house and especially to provide "towels, a bucket, and sponge for her to take a sponge bath" is completely over the top! Please allow her to to as much she feels physically able to do, she may very well be weak for the first couple of weeks but emphasising her feelings of being an invalid are not being helpful, in the long run she needs to be able to believe she can regain complete independence.

Do add a toilet riser and arms. If she's unsteady a rollator or walker can be rented while she regains strength. Instead of the bucket and sponge get her a bath chair and perhaps an aide to help her shower for a few weeks, leave any sponge bathing to the sink in her bathroom (I highly recommend this product - Understand that it's going to take time to get her INR stabilized, just follow directions and don't freak out about every dip and rise. And the body is focusing on healing so she's going to be tired as she recovers, that's OK too.

I'm coming back to address your post about her diet - even if she is on coumadin the dosage will be adjusted to take into account her normal diet so there is no need to go overboard there either, in fact unless she has been eating in a very unhealthy way she shouldn't need to totally change her diet. Appealing food and appetite are essential to mental wellbeing and recovery.
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Thank you all
She will be coming home today, and this has helped us prepare questions for the doctor.

Thank you again.
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Vitamin K is in green leafy vegetables. Like lettuce of any kind. You should be given info on what she cannot eat with the blood thinners. Aspirin would be one thing so find out what painkillers she can take. No Vit e either this includes fish oil. They thin out the blood. She will bruise easily and cuts will be hard to stop. They are probably talking about Neosporin when it comes to cuts.

Vegan diet means no dairy no eggs. That maybe a little drastic. I understand no red meat but she should be able to have fish and chicken. And some veggies have vitamin K so be aware.

My daughter is a Vegan and recommends these two sites
Whole food plant based unprocessed
Simple, few ingredients, oil free
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The biggest worry is that you need to be aware of symptoms that indicate there is unusual bleeding as a side effect. Black stools can indicate bleeding in stomach or bowel. You want to be certain that your doctor or pharmacist gives the OK on meds or supplements (including teas) that can further thin the blood. Aspirin and motrin (and other NSAIDS) are not OK unless the doctor approves them.
You need to speak to the doctor because clearly you are very uncomfortable how to move forward on anticoagulant therapy. You can ask for a nutrition consult; they will have material for you.
The forum should not be the one to give you advice on anything other than "call your doctor". Be certain to keep all appointments with labs to see that the blood is drawn to measure the efficacy of the therapy.
Do not rub extremities.
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You really don’t need to go to those extremes (cease laughing and joking, et al). If she is mobile supervise her to assure she doesn’t fall. She can walk upstairs to shower & her room when she gets stronger. You may have the opposite effect of making her more immobile. The shortness of breath will improve when the clot begins to dissipate.
We don’t know if she is taking Warfarin or the other new anticoagulants. I would read her DC instructions as usually all that is covered there. Vitamin K is not an issue if the med is not Coumadin.
In my experience folks status post PE are on anticoagulants at least 6 months if not more after the episode.
If she cuts herself, hold pressure on the site. If she doesn’t stop bleeding call 911.
I see many many patients on Eliquis now vs Coumadin. If given Coumadin there has to be a reason physiologically that we are not aware of - talk with her PCP at her hospital follow up visit with your concerns. A patient should see their PCP within a week or two max post hospitalization. Use that visit to ask your questions.
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No, that was an assumption we made, because the hospital was only feeding her salads. but it seems now, most foods are ok. We will stay away from red meats. and only white meat fish, like cod, halibut, and one other I cant remember.

no salt, no caffeine. And no tea bags. Very little sugar, if any. We will make spearmint tea. and also make tea from lemon tree leaves. And Jamaica tea (a tropical tea leaf).

Otherwise its just purified water.

If you could share a reputable website that would be great.
I'm having trouble finding any website that lists recommended food with anticoagulants, reputable or not.

We may have to speak with a few different doctors and ask for a recommendation to a dietitian.
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We got a styptic pencil at CVS but have never used it.

We got a pamphlet from the doctor that explained Vitamin K and coumadin; as I recall it did emphasize consistency. Watch out for leafy greens, herbs and as it turns out, green tea. The pamphlet listed high/moderate/low foods, but we had to get numbers from a reputable web site.

I don't remember anything about vegetarian/vegan. Maybe that is for one of her other issues?
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Thank you!
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10.   (I ran out of space).   Books are great, especially ones that aren't violent or cause stress.   There's a series of books by Bradley Trevor Greive that are perfect for relaxation.

They can probably be bought or ordered through Barnes & Noble.   

11.   What are her favorite pasttimes?   Gardening magazines, flowers, animals (especially kittens and puppies) seem to generate happiness.    These kinds of magazines or books as well as those from her favorite authors could be bought for her.
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1.    You mentioned Vitamin K, so I'm assuming she's on Coumadin/Warfarin & not one of the newer drugs used for blood thinning?  Coumadin and Heparin are standard anticoagulants and react differently than the alternatives.   If she's on Coumadin, she'll have blood draws scheduled regularly to monitor her  blood levels to determine how anticoagulated they are.   It's a simple finger prick test, and is performed in our area by a division of hospitals that focuses on blood draws.

Alternative medicines react differently, don't require regular monitoring, & according to the pharmacists who managed the Anticoagulation Clinic we attended, do NOT reflect how anticoagulated blood levels are.   The pharmacists felt they were more dangerous b/c of that.   So we decided never to use them.

2.    There are interactions between not only vitamin K foods, but also with some medications, which can either increase or decrease the effectiveness of Coumadin. 

Our pharmacists who managed my father's blood levels advised that K foods can be eaten, if they're eaten CONSISTENTLY in comparable amounts.  In other words, don't eat lots of spinach and other K foods, then go without them for several days.  

Doctors didn't tell us,  including one idiot who prescribed a medicine which caused massive changes in Dad's blood levels and sent him to a hospital.

3.    If you don't have a med list for your mother's physicians to review at visits, make one, noting that he's on Coumadin.    If anything is prescribed for him, ask the effect on Coumadin.

4.   The U of M Hospital used to have an excellent list of foods & medicines that could affect K levels.  I'm still looking for that for you.   In the meantime, these may help:

Patients will bruise more easily, arms can become purplish.    This handout should give some insight into how to address these side effects.

This is a good list of K foods:

5.   A stationary bike is good for arm & foot movements.  Examples:

The larger ones are typically in rehab facilities & are much more expensive.  My father bought the bike pedal device for about $10 several years ago.  They're more expensive now, and could be found in miscellaneous items catalogues (such as Miles Kimball, Carol Wright ) or probably at a DME store.

6.   For cleanliness, you might want to consider no rinse shampoos and soap.   In my experience they're frequently used in rehab centers; I bought some for home use and even use them myself.    There are several advantages:  they don't require complete disrobing, avoiding the chill that can affect older people.   (You mention that she gets cold, so this could avoid that).   They can be used while an individual is sitting down and avoid the challenges of standing, or sitting, even with bucket bathing.

7.   I'd be very, very careful about having her move around until she's been assessed by a home care nurse and physical therapist.    Ask them for handouts, watch as she performs the exercises and ask how often she should do them on the days the therapist doesn't come.

8.   I rarely use gels or powders for cuts, and given the Coumadin/K interaction, I would raise this issue with the nurse.    Your mother probably will develop purple blotches, especially if her skin is thin.   My father did, and we learned that they really don't require treatment; just try to avoid injuring the areas.

The nurse can also suggest sources, such as a pharmacy, or a DME supply store (which I would choose over a chain pharmacy.)

9.   Stress.  I would eliminate political topics and & news, but laughter is good therapy.   So is music.    We had PT, then played music as a reward.   Or DAd put on a CD and did his foot and leg workouts.
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This forum really cannot offer medical advice. You should press her doctor(s) for direction re diet and activity. Usually after medical procedures, the medical staff gives the patient a print out of instructions to follow when she or he gets home.
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