Thursday, September 6, 2012

The Game Changer- Our Warfarin Diet

The Symptoms
My husband had been getting short of breath for the couple of months, something we attributed to the strange, dry summer and allergens.  Add age and weight to that too.
He had some pains in his legs, again attributed to his periodic sciatic nerve problems.
Never did we think about blood clots.

Last Monday he was in terrible pain, the worst ever. 
It was centered on his side and radiating towards his back.
Not in the heart area, more the side and lower ribs. 
It hurts to breath, like when he broke his ribs.
I was worried. He never shows signs of being in pain, even when he is.

This was serious, but keep in mind- He's A Guy.
"Oh, it will pass"
"It's just allergies"
"I pulled my back today, it's my ribs"
"No, don't call an ambulance, I'm fine"
All along, sounds of desperate pain.

It seemed to get better so we waited until morning.
"Should I take you to the hospital?  No?"
I went on to work- I will NEVER let him do this again.
We were lucky.

He called me just after I arrived at work- Come Home.
I get home and convince him we're going to the hospital and he agrees.
He can't get down the steps, not enough breath.
So I call for an ambulance which is only about 3 miles from my house.
"No siren!" he requested.
OK, 911 said no sirens.
In the distance I hear "Weee- oh, Weee-oh"
There are sirens.  But they turned them off when they got to our street.
An army arrived and multiple vehicles.

They checked his heart- OK.
They checked his lungs for congestion- OK.
No need to transport, they help him down and into my car.
We head to the ER, the hospital midway between my office and home.
It's new and various family members have been there.

(In fact, we out to be getting a family discount,
or at least a wing named after us!)
It's small and has easy access.
It's on my insurance plan.

The Exam
It is an emergency room so we know there will be a wait.
There's quite a few people but they get his vitals and we get a room.
It's a nice hospital, even the emergency room is family friendly.
We are there for hours, he has CAT scans, MRI's and whatever else they test.
They almost let us leave, they can't find anything so it's probably rib inflammation.
He's getting dressed and the doctor comes running up the hall-

The Diagnosis
The radiologist found blood clots in his lungs.
He's has  pulmonary embolisms. (PE)
Clots are also in his legs.
He's admitted immediately and started on a Heparin drip.
We almost lost him,
we should have gone to the ER the night before.
They said most patients that die from PE
do so within the first 6 hours.
These clots traveled up his leg and through his heart
then into his lung.

The Treatment
He was in the hospital since last Tuesday morning,
discharged on Monday - Labor Day.
He had at least 4 IVs in him.  It's not just the clots. 
Heparin for clots until they can start the Coumadin (warfarin).
They think his sugar is high, pre-diabetic (thoughts on that later)
He has some cholesterol issues.
The most dangerous, clots aside, is his debilitating migraines.
He has been on very high doses of aspirin-
 the combination that is in Excedrine Migraine.
He cannot continue with the blood thinners he is receiving,
they need to find an alternative.
He can bleed to death if he takes them since they too thin the blood.
He had a head injury when he was 14 or 15- something stupid that a kid would do. 
He's had headaches ever since. These are bad.
They give him tunnel vision, he "sees" things, he has to sit in the dark.
He can't work if they are not controlled.

We've seen the regular attending doctor for the clots.
Our doctor was on vacation (holiday weekend),
then the covering doctor went on vacation
and we had a third covering doctor.
We met many, many people during this week.
A dietitian for guidance on how to eat when on warfarin, for pre-diabetes, cholesterol.
Neurologist for the headache problems, wean him off the aspirin,
try to break them and find an alternative.
Physical Therapist- to see if there is something wrong
with his neck/head/shoulders that triggers the migraines.
Diabetes doctor for, diabetes advice.
And the best nurses and support staff ever.

The Facility
St Clare Hospital in Fenton, MO
A brand new center, smaller, easier access.
The nursing staff is very attentive, at least in our case.
Food- well, it is a hospital after all.
Patient food is different than cafeteria food.
Medical Center Link here.

Follow Up
After a week long stay he was sent  home.
On a Holiday.
Tuesday- back to the coumadin center for counseling and blood testing.
They will come up with a test dosage which will be tweaked with follow ups every couple of days.
Tutoring on what to eat - vitamin K intake must be consistent.
Same portion every day or none at all, no ups and downs.
It interferes with the clotting.

Guess what- This was my Spring plantings:
Spinach, Kale, Greens, all green leafy vegetables (including lamb's quarter).
The things you can survive on, the early crops.
All High Vitamin K.
I need a new game plan.

In addition, we have to follow the heart and diabetes diets too.
I don't believe he is diabetic.  They did the A1C levels and said it was high.
This is your blood for the three months prior to the day it was drawn.
Imagine it as an M&M, how thick is the sugary candy coating.
His was thick.
At the same time they told us sugars increase
just before you realize you are getting sick.
He's felt bad for a few months- did his sugar spike and make the coating?
All his tests for the week were in the normal range.
We'll test but I think they may find that he has, if anything, low sugar.
Sometimes he gets shaky and needs to eat.

The Future
This one is difficult.
The headaches rage.
He isn't able to think straight due to the pain.
He sits in the dark holding his head.
I have to be quiet.
He can't take the narcotic/seizure concoction
and still drive to draw blood.
I have to work and I have to be there
to hold my job.
If I lost my job there is no insurance.
Family leave is unpaid.

No job- he can't work construction even if he wanted due to the bleeding risk.
No unemployment because right now he can't work.
We don't have many bills, I can almost cover them,
but not quite.
No satellite-internet, no Direct TV, no car payments.
Our internet is through an antenna and not very expensive.
I use it for work as well as normal bill paying, etc.
I'll be able to work one day per week at home starting in the Fall.
Being an hour away from town, that's a good savings in gas and car maintenance.
We have cell phones but it's cheaper than
our normal line with the extended calling range into town.
Our cells are as close to rotary dial as you can get.
Plain Jane.

The house payment is large and is covered in ex-business debt.

We cannot sell the house, the market is bad way out here,
it needs some work and we couldn't sell it for enough to cover the loan.
This was supposed to be the up and coming growth area, until the economy changed.
We were staying until the kids were out and we were close to retirement.
We'd sell it and buy something smaller with land for cash, something
sort of Morton Building-ish.
Their houses are really very nice
and the inside can be made any way you want.
I don't think this is going to happen now.

We'll figure out something.
The key will be getting the headaches under control so he can function.
Once he can function, he can get a job.
I wish there were a job he could do from home,
internet related, even if it doesn't pay much.

We need to change our diet.
We need to exercise.
We've been discussing this.
We've prepped for so much, except our health.

I am not complaining.
No sympathy needed- it is what it is.
This is a warning.

Start now, take care of your health.
They told us that 30 minutes of walking--
AFTER dinner-- is the best exercise.
They don't know why after dinner, but it is.

Maybe say a prayer for him-
for recovery
to get the headaches under control.

Thank you.

Warfarin Image Credit


Gorges Smythe said...

I'll be praying him and all the rest of you that are touched by his life.

Unknown said...

Dear Kathy, I am praying for your husband and your situation. I would definitely try taking him off grains and dairy starting today. It may take care of the headaches and will definitely help with maintaining blood sugar. I recommend the book, "It Starts with Food". It's the Whole30 approach. Email me:

Sunnybrook Farm said...

Thanks for the warning, I get enough exercise while working but my wife needs to do more walking probably. Sounds like you guys have been doing stuff right, just got caught on this one but now you know. Glad things have turned out good as it could have been a real disaster!

Denise said...

I had to take my hubby to the hospital too. Why are they so stubborn? He was swollen up really bad. He waited and finally decided to go to the doc. Our regular doc's office was closed this particular day. We went to the local clinic. They didn't even see him just told us to get to the hospital. Went to the hospital and he was in heart failure. Was in the hospital for 4 days. Luckily he got there in time. Stupid, really stupid. Now I watch him like a hawk and if he's not feeling well we call the cardiac doc or I take him to the hospital. I have bad headaches like your husband. Has he ever tried Peppermint tea or chamomile? They calm mine down and applying ice or heat really helps as well. I ordered a new book the other day from Amazon called Wheat Belly. You might want to check it out. It's by a cardiac doc who says wheat is the cause of a lot of our medical problems. Hope your hubby gets better. Take care of yourself too.

Kristi said...

You and your husband will be in my prayers. I'm so glad he got to the hospital in time and received an accurate diagnosis!

Kathy Felsted Usher said...

Thank you!

Kathy Felsted Usher said...

Yes, we are rethinking the entire diet, slowly since we have to get the coumadin levels stable.

Kathy Felsted Usher said...

MEN! It wouldn't surprise me about the wheat. Is it the wheat or what we do to it, I wonder?

Kathy Felsted Usher said...

Thank you.

Kathy Felsted Usher said...

He had some luck discussing it with a pharmacist which is also his Coumadin counselor. They are trying some caffeine therapy. It is seeming to help.

Minor V victim said...

Kathy, it's the wheat. 'We' genetically modified our wheat, to produce more wheat grain. We have ingested it, and it's 'helped' us out as well. I saw this cardiologist on TV the other day, Dr. William Davis. Dr. Davis made a lot of sense. I thought about getting his book as well.

Yahoobuckaroo's Blog said...

Even though they sound completely antithetical to one another, there's actually a very fine line between diabetes and low blood sugar. My dad had the latter for many years. It would sometimes give him headaches and make him feel woozy. The doctor told him that when this happens he should just eat a candy bar or anything with a little sugar in it, but not too much.

Blood clots...that's how we found out my mom had cancer in 2001. They started in the legs. The doctors stopped them before they got as high as the groin area. But she kept getting them. Eventually they figured out she had liver cancer (which often causes blood clots).

My dad also developed blood clots in his legs while in the hospital for a bleeding ulcer a couple of years ago. They put in 3-shunts (a very painful process without anaesthetic) and then sent him to the nursing home to recuperate. He also had a bad tract infection that put him out of his head a good deal of the time. A couple of days after being in the nursing home he was found dead one morning. We didn't have an autopsy performed, but my guess is that a blood clot got to his heart. He was in no way ready to leave the hospital. We could have probably sued the hospital for a pretty penny. But we knew that pop was ready to go. All he talked about was going to see mom again. And being Christians, we've never sued anybody and didn't want to start. (We've also, none of us, ever been sued for anything, so maybe there's some good karma there.) The nursing staff was terrible! Often only one nurse would be assigned to the entire floor. Dad was right at 400 lbs. when he died and none of the little nurses could turn him by themselves, so they would actually call me at home to come and turn him (if I wasn't there already). Stay away from St. Elizabeth's in Belleville! It was a very bad experience. If they just would have kept him in the hospital....

Yahoobuckaroo's Blog said...

Part Two

Note to Tom: Blood clots are very dangerous. Don't take them lightly ya big dope! They usually don't come back once treated. If they do come back, ask the doctor to check your liver. It may not be cancer, but various liver ailments are often the cause of blood clots. Don't expect your doctor to think of this diagnosis on his own. It's been my experience in the doctors are great at treating ailments but lousy at diagnosing them in the first place. Help them! (Even if they resent it.)

I think you'll be better soon, but if things get bad financially before then, think about the "tiny house movement" and consider buying a large shed from Lowes and living in it. You can get a large barn-like one with a loft area for beds for less than $5,000. Get a composting toilette and run a water line from the well and also use one circuit from the main house for a large extension cord to go to the shed-house. Then you could rent out the main house until you were back on your feet. People do it all the time. Go to YouTube and search for "tiny house". My sister and I have talked about putting up a shed for a cabin down at Kaskaskia River like this one (or more likely two hooked together). Price is $2,649 for one.

They make a nice little cabin. Throw in a wood stove and some insulation and it's really not bad living. Just a thought.

I'll say a prayer for ya. Just make sure to do what the doctor tells you. I hate praying for slackers!

Manny said...

OMG, my prayers for your husband. He looks so healthy in the pictures you post of him. This was very serious. His delay could have been deadly. Thank God it wasn't. Unfortunately I've got a bit of experience with warfarin; both of my parents at one time or another were on it. It's very hard to control the right amount. It's so sensitive to diet. At one point my mother was going for weekly tests to make sure the blood was in the correct range. Stay on top of it. May God look over you both.

3rnigerians said...

Kathy, you are both in my thoughts and prayers. My Mother has been on Coumadin for more than 5 years now and the blood draws are still almost weekly. Be prepared because the thinned blood can make him feel forgetful and fatigued a lot. I remember when My Mom learned she had to eliminate Vitamin K from her diet. I was shocked. That was nearly all the leafy greens. Yikes. I hope he turns our negative for Diabetes. I know how painful migraines are. I am praying for your hubby to feel better soon, to get his condition under control and for you to be given strength to be able to keep focused so you can manage the household and maintain your health through this. Hugs from California.

Kathy Felsted Usher said...

He'll mention the liver to his doctor, he has an appointment pretty soon. So sorry about your dad's experience. Healthcare is difficult now, especially as insurance and/or medicare dictates what happens and you have to fight them to get care if it isn't on their schedules. My friend actually had the ins tell her that she should have shopped around for a radiologist. Her husband was taken by ambulance after rupturing his femoral artery. The radiologist she used was the only one in the town-must have been at the hospital. He nearly lost his leg and bled to death right then and she was supposed to shop around?

Kathy Felsted Usher said...

I know, the green leafy ones! The ones I am planting. He is doing better with some caffeine therapy and it seems to be working. It's been less than 24 hours but I am hopeful.

Kathy Felsted Usher said...

That's what I thought. I'm sure it's quite different than what wheat was hundreds of years ago. It won't be long before the other grains are the same way unless they stop this.

Candy C. said...

Dang, Kathy! What a mess! Tell your hubby to mind the doctors and I hope the headaches continue to do better. {{BIG HUGS}} to you both.

Anonymous said...

You are right around the corner from me. My latest granddaughter was born at St. Clare's. It's a new hospital but one of the best around. We felt so cared for there, the entire family. Good luck to you. I'm in Imperial if you ever want to meet a new friend.


Kathy Felsted Usher said...

That would be great! As soon as he's back to his regular routine I'd love to meet! Keep up with my blog so we don't lose contact. You are coming over as anonymous so I assume you don't have a blog? If you do, let me know and I'll follow it to keep in touch.

Susie said...

Kathy so sorry your DH is not well at the moment and am thinking of your both that things get better soon. Susie x

Kathy Felsted Usher said...

Thank you! He's making progress, in fact he's got the headaches under control so far and his Coumadin levels have been testing in the right range.

Carrie P. said...

Oh, my goodness! what an adventure you two are on.
I pray he gets relief from the headaches soon. I get migraines so I understand about that. Poor guy.
Praying all works out.

Kranky Granny said...

So sorry to read this distressing news. I will have your husbands intentions added to our family and church pray listings.

Hope he makes a speedy recovery.

Kathy Felsted Usher said...

Thank you so much! It shouldn't surprise me at all but every time friends offered prayers, he improved. I would say it was not a coincidence!

Kathy Felsted Usher said...

Manny, I hope you get this. I had to delete your blog, my virus protection wouldn't let me onto your site, which feeds into mine through my side bar. Malware detected. It just started today. It could be a comment with a link or an ad? Maybe my virus protection is just very sensitive. So sorry but I can re add you if it goes away.