New to Warfarin

[carolinemc]

Good morning,
I underwent my 7th OHS on January 19th and afterwards have been put on Warfarin to prevent a clot from forming in my new porcine pulmonary valve. I have never had to be on Warfarin before and it is proving to be a bit of a challenge since my INR levels are very erratic. They range from 1.4 to 6 each week. I am on a life long course of Fluconazole due to a previous bought of fungal endocarditis and these 2 drugs don't "play nice".

My surgery performed at Mayo Clinic and they have been trying manage my dosing and INR levels via the patient portal. One of the issues I am having is the lab where I go back home in Des Moines are extremely slow about getting results and I have not found a competent doctor here to use. I have to go get labs done twice a week currently since my INR keeps bouncing around. I am eating a regular diet. I know the deal with the vitamin K rich foods and my diet is very regular.

Has anyone been on both Fluconazole and Warfarin at the same time? Did you have issues with your INR levels and if so how did you manage it?

I have troubles every so often if I take antibiotics, or haven't exercised for some time, it will go up. My lab, which is at the hospital I go to and get the results within 3 minutes. They suggest eating a little more green, leafy veggies, like lettuce. Going twice a week does not give your Warfarin time to settle in your system. They need to slow it down to once a week, giving the new dosing a chance to do it work. So glad you know how to manage the Vitamin K issues, for consistency is the way to go, for Warfarin can be managed when you are consistent on your food intake.

 

[QuincyRunner]

Was that a typo Goffrey or have your really had 7 (SEVEN) open-heart surgeries?

 

[pellicle]

I was thinking about your story trying to understand why you have the fluctuations that you have in your INR. There are at least three main variables that can change. The amount of warfarin, the amount of fluconazole that interacts with the warfarin and the amount of Vit K you ingest and the Vit K your biome makes

and as we know that fluconazole is a strong inhibitor of P450 I'd rank them in order of significance as you have mentioned them but with a much higher weighting for the first point.

 

[pellicle]

Was that a typo Goffrey or have your really had 7 (SEVEN) open-heart surgeries?

my god, you're right, I thought that was the date ...

this may rank as the winner of the "how many OHS's have you had" awards.

 

[goffrey]

Was that a typo Goffrey or have your really had 7 (SEVEN) open-heart surgeries?

Unfortunately yes 7 OHS to date. One silver lining is I don't remember some of them as I was quite young. First OHS at 2 months, 2nd 18 months, 3rd 3 years, 4th 4 years. 5th 12 years, 6th 14 years and this one at 25 years old.
I remember my mother telling me "Son everyone has a burden in life to bear, this is yours but don't feel sorry for yourself. And if you must make it short and dust yourself off and keep going." It has served me well and helped me survive them. And I know as hard as this has been for me I can't imagine how hard it has been for my mother who did most of this with no support.

 

[goffrey]

my god, you're right, I thought that was the date ...

this may rank as the winner of the "how many OHS's have you had" awards.

Not an award I wanted to win!! I also had one closed heart surgery a thoracotomy to place a BT shunt. Most of these surgeries I either don't remember or don't remember well other than the last 3.

 

[goffrey]

I have troubles every so often if I take antibiotics, or haven't exercised for some time, it will go up. My lab, which is at the hospital I go to and get the results within 3 minutes. They suggest eating a little more green, leafy veggies, like lettuce. Going twice a week does not give your Warfarin time to settle in your system. They need to slow it down to once a week, giving the new dosing a chance to do it work. So glad you know how to manage the Vitamin K issues, for consistency is the way to go, for Warfarin can be managed when you are consistent on your food intake.

They have slowed it down now to once a week, I think they were being very cautious with the transition to Fluconazole. I went last Monday and go again this coming Monday so I am hoping my INR is between 2-3 but I would take anything below 3.5 at this point.

 

[Chuck C]

I remember my mother telling me "Son everyone has a burden in life to bear, this is yours but don't feel sorry for yourself. And if you must make it short and dust yourself off and keep going."

I like your mom's advice very much. You've got a great attitude towards all of this.

 

[pellicle]

And I know as hard as this has been for me I can't imagine how hard it has been for my mother who did most of this with no support.

here's a small recognition of the mothers who helped their children to lead a life in an age where heart surgery became an option and what they did and went through.

 

[carolinemc]

Not an award I wanted to win!! I also had one closed heart surgery a thoracotomy to place a BT shunt. Most of these surgeries I either don't remember or don't remember well other than the last 3.

You were asleep during the bypasses. Many children believe we are awake during the procedures. I went through that in 1973 at eight years. So you are okay.

 

[TomD]

I have troubles every so often if I take antibiotics, or haven't exercised for some time, it will go up. My lab, which is at the hospital I go to and get the results within 3 minutes. They suggest eating a little more green, leafy veggies, like lettuce. Going twice a week does not give your Warfarin time to settle in your system. They need to slow it down to once a week, giving the new dosing a chance to do it work. So glad you know how to manage the Vitamin K issues, for consistency is the way to go, for Warfarin can be managed when you are consistent on your food intake.

,

I have troubles every so often if I take antibiotics, or haven't exercised for some time, it will go up. My lab, which is at the hospital I go to and get the results within 3 minutes. They suggest eating a little more green, leafy veggies, like lettuce. Going twice a week does not give your Warfarin time to settle in your system. They need to slow it down to once a week, giving the new dosing a chance to do it work. So glad you know how to manage the Vitamin K issues, for consistency is the way to go, for Warfarin can be managed when you are consistent on your food intake.

The only answer for managing warfarin without going crazy is to get your own home tester and manage it yourself. I have been on warfarin for 15 years and I never go to the lab

 

[carolinemc]

Not an award I wanted to win!! I also had one closed heart surgery a thoracotomy to place a BT shunt. Most of these surgeries I either don't remember or don't remember well other than the last 3.

You were asleep during the bypasses. Many children believe we are awake during the procedures. I went through that in 1973 at eight years. So you are okay.

,

The only answer for managing warfarin without going crazy is to get your own home tester and manage it yourself. I have been on warfarin for 15 years and I never go to the lab

Nope, for I do not have one and can't get one, for Medicare does not pay for INR meters for home use. Nor the test strips. I have been to the labs since 2001 and no problems except for medication interaction or uptick in exercise. No problems at the lab.

 

[goffrey]

You were asleep during the bypasses. Many children believe we are awake during the procedures. I went through that in 1973 at eight years. So you are okay.

What I meant was I don't remember the recovery or the hospital or any of it from when I was a young child and had the first 4 surgeries. I was too young to remember the recovery which may be a blessing because the ones I do remember are not that fun!

 

[carolinemc]

What I meant was I don't remember the recovery or the hospital or any of it from when I was a young child and had the first 4 surgeries. I was too young to remember the recovery which may be a blessing because the ones I do remember are not that fun!

My early experience was age eight and when I did get back to school, after recovery and a teachers' strike in KCMO. The kids were curious, and I had to tell them I was asleep and felt no pain during surgery. I remember after surgery and in the ICU, the nurse asked if I wanted to watch something on television for an hour. I said I wanted to watch the Sonny and Cher show. It was the family hour back in 1973. That I do remember clearly.

 

[goffrey]

My early experience was age eight and when I did get back to school, after recovery and a teachers' strike in KCMO. The kids were curious, and I had to tell them I was asleep and felt no pain during surgery. I remember after surgery and in the ICU, the nurse asked if I wanted to watch something on television for an hour. I said I wanted to watch the Sonny and Cher show. It was the family hour back in 1973. That I do remember clearly.

Wow I remember nothing, but I was much younger than 8 years old for mine. My 4 heart surgeries I was 5 or younger so I don't remember a thing. I do remember my ones at age 12 and after.