New here, lots of questions about everything :-)

[RobbieLee]

On Decmeber 21st, it will be exactly a month since I had a tricuspid valve replacement (surgeon used a porcine valve). Anyway, the docs have yet to get my coumadin level right. I'm still at a 1.4 to 1.7 and I guess I need to be a 2 or 3. Do most of you on Coumadin find it normal for it to have taken so long to get my blood thinned? I only have to be on Coumadin for 3 to 6 months. How long can the threat of blood clots exisit after surgery? Now, my sternum is another thing, awe, ouch, etc. LOL I cannot lay flat yet and I have this pain right between my breasts that just aches and I am more sensitive than normal (ladies do you know what I mean?) I still am entertaining thoughts of terrible things happening post op and wonder when I'll get back to normal and not get so depressed about feeling like a truck hit me every morning! Once I get going, it's not so bad. But first thing out of bed is the worse. I have also come off of my pain killers with the exception of one Lortab at night. The narcotics just make me feel too hungover and I'm worried about becoming addicted. Another thing, I've already heard about this valve I have (pig valve) not lasting more than about ten years. Is there anyone who can relate to that and has had theirs replaced for a second time? It's been so recent, the thought of even thinking about having to do it again is just awful. Well, I guess I rambled on long enough for a first time. Thanks in advance for any advice! Sharon

 

[Johnny Stephens]

Hi Sharon

Well, at a month post-op you're still fairly early in the game. My guess is, if you're not fighting any complications, I'd bet in another 2wks - 1 month you'll really be improving quickly.

The early Coumadin drops happened for me as well, as you get well, are more active, and begin to eat more you will metabolize it more quickly. You don't say how often you are being tested; if they are looking at it regularly they should be making measured changes to your dosage to get it right.

Hang in there...soon you will feel so much better that you won't think much about these harder times!

Welcome to the group. You've landed in the most supportive place you will ever find.

 

[RobbieLee]

Thank you Mr. Stephens

Thank you Mr. Stephens

I am being checked every week for the coumadin. I started on 3 mgs a day and am now up to alternating 6 mg one day, 9 mgs the next and so on. I look forward to getting it straightened out for sure! My family (husband and four children) ages, 13, 12, 4 and 15 months are looking forward to it as well. I think I get pretty cranky and moody. Well, thank you again for the note and advice. It is very much appreciated. I have read so many different posts and am learning so much from everyone. I wanted a mechancial valve, like you have yourself, so that I wouldn't, hopefully, have to repeat this surgery.... but I have noticed that some people on this site have gone through it a few times and I stand in amazement at their strength and courage. Take care, Sharon

 

[RobThatsMe]

Hi Sharon,

Welcome!!! Glad you found this wonderful site.

How long do you have to be on Coumadin? Those of us with mechanical heart valves are on it for life, or until a new wonder drug takes it's place. There is one in the works, called Exanta, but that probably will not be used on valve replacement patients for several more years. It is still in the trial stages of testing and complience.

You will find that as you become more active, as Johnny stated above, you will have to adjust your dose. Coumadin is metabolized and flushed from the body at a higher rate with increased activity. I am sure that your activity is increasing now that you are a month after surgery. There are many other factors that can effect your INR, such as exercise, food, other medications, illness, alcohol.

Good luck, good health, and happy holidays!
Rob

 

[Ross]

I have noticed that some people on this site have gone through it a few times and I stand in amazement at their strength and courage.

Hello and welcome to the family. I don't know that courage and strength have much to do with it. When you don't have a choice, you pretty much do what has to be done.

The way they are dosing your coumadin worries me. How many milligrams do they have you taking over one weeks time? It worries me because of the vast difference between days. 3 to 6 mg. and alternating days?

 

[RobbieLee]

Hello

Hello

It is so nice to get responses from people who can relate and give me insight. Salads, alcohol, ever again???? I am beginning to wonder. Actually the alcohol I can live without, but I love my salads. I have been told no green leafy vegetables and those are the things I really like to eat, chef salads, cabbage, spinach, all that. But I am lucky that it is only temporary. All of that nutrition for me came from being a competitive bodybuilder in my twenties. So, that is another issue for me. Fitness and how much of it can I now tolerate? I think weight lifting can cause some issues. I see my cardiologist Jan. 7th and will ask her all about what I can and can't do and of course I'll be posting to the Board to converse with those who can relate! Look forward to talking again. Take care, Sharon

 

[Creed3]

Hi Sharon!
Everyone here can relate in one way or another. Like Johnny has said, you are still pretty early in the game. I am 12 weeks post op. I had a mechanical valve put in the aortic valve's place. I remember thinking because I was younger (34) I would bounce back and be back to close to normal at 4 weeks post op. Boy was I wrong. I know what you mean about the mornings being the toughest to get up and move around. Sleeping wasn't always the easiest either. I couldn't stay in one spot long and then I had a hard time getting comfortable. Lots and lots of pillows is the best. It took me a little while before I could sleep on my side. I have only been sleeping on my stomach in complete comfort for the last few weeks. Also, be prepared that after you stop feeling some of the pain, once you get at about 10 to 12 weeks post op, the nerves start healing back together and you may start to feel some soreness again. That is what I am noticing right now. But it isn't anything like when you first had the surgery. You will start feeling better. You will really notice a big difference in the next couple weeks. Try to look at recovery week to week instead of day to day. You will really start noticing improvements. Regarding my coumadin. I did have mine regulated by about week six post op. Everyone is different. I felt like they were never going to get it right. I just had my flu shot and that messed me up a little bit and they are now trying to regulate my dosage again. My last INR was 1.5. They now have me on 7 mg for 5 days and 6 mg for two days. They want me at between 2 and 3. Coumadin is hard to regulate at first. Everyone is different, so just try to be patient. I know it can be difficult. Once you are able to drive again and can pick up your kids, you will begin to feel more like yourself. You do still need to be very careful at 4 weeks post op. Do't try to rush anything. You will get there. In the beginning I felt like I was never going to feel normal again. Right now I am going through the incision itching like crazy. I used to judge my recovery like this....1st week after surgery felt like a train hit me....2nd week post op felt like an 18 wheeler....third week felt like a bus.....fourth week felt like a regular truck.....5th week felt like a car....etc.....You are on your way to feeling like yourself again. You will get there soon. If you have any questions or just need to vent etc....that is what we are here for. Let us know how you are doing in the days and weeks to come.

Take Care and Happy Holidays!
Gail

 

[RobbieLee]

Hello Ross Y

Hello Ross Y

Hope I am replying to these posts properly and that you are getting my response. I am just not that great on a computer. Anyway, I started out on 3 mgs of Coumadin a day. Then a week later they put me on 6 mgs a day. I have gone once a week (every Wednesday) for an INR. Yesterday it was 1.7. So they changed me from 6 mgs a day to alternating 6 mgs yesterday, 9 mgs today, 6 mgs tomorrow, and so on. It was a nurse that told me to do this and I did think about calling my doctor today, but forgot to this morning. It worries me too. I hate taking medication anyway and I truly want to get this right and quit worrying about it. I appreciate your response and look forward to hearing from you. Sharon

 

[Ross]

Hi Sharon

If you like greens, do not cut them out of your diet. Your body needs the nutrients and they taste good too. Moderation is the key. The High Vitamin K greens will lower your INR, but if you eat them, eat about the same amount each day.
There is a .PDF file, you'll need adobe acrobat reader to view and print the file out. If you don't have Adobe acrobat, let me know and I can post the link to get it. This PDF has the Vit K value for many foods that we like.

http://www.valvereplacement.com/downloads/VitaminK.pdf

A member here, Al Lodwick, is a pharmacist and runs a coumadin clinic. He has his own website also that will answer many of your questions concerning coumadin/warfarin. If you have any questions for him, post them in the Coumadin Forum and I'm sure he'll help you out too.

http://www.warfarinfo.com/warfarinfo.com2.htm

There is also an article on warfarin management that I think would benefit you. It's 19 pages long, if you print it, which I would suggest, but that's up to you. It will help you understand how to manage your therapy better.

http://www.aafp.org/afp/990201ap/635.html

Alcoholic beverages are not out of the question, but again, in moderation (1 or 2 drinks) If you go on a party spree, you run the chance of a major bleeding episode and since the liver is the organ that metabolizes the medicince, you want to be very careful about drinking.

Here is the link to Adobe Acrobat Reader.
http://www.adobe.com/support/downloads/product.jsp?product=10&platform=Windows

If you have any other questions, just post them. As you can see, we are more then happy to help. I'm concerned about the alternate dosing because of the way their doing it. I think it would have your INR bouncing all over. I think you'd be better off with a straight dosing schedule such as, 5mg per day and retest in one week. I'm not a Doc, so I probably shouldn't post that, but read that article from AAFP.org and you'll soon see what I'm leading you to.

 

[djacq]

Hi Sharon,

I am at the 18 wheel stage of recovery for AVR. Getting stable on Coumadin has been a worry for me also. I have been on 4mgm of coumadin a day and just Monday hit 2.5 INR. It has been ranging 1.3-1.6. Today it has dropped again to 2.3. There seems to be so many variables.

I have been getting labs done every 3-4 days and using my Pro Time in between. It seems to run .2-.4 less than the lab I am using.

My platelets are elevated enough that my cardiac RN who WAS following me for 30 days, transferred my case to my PCP which I find worrisome as I have no idea how he plans to handle my coumadin and seems to be not worried about my high platelet count and doesn't plan to see me until Jan 8th.

It seems to me that you really have to be on top of things yourself, frequent calls to remind them to call labs for INR's, follow-up labs, med refills. Cardiogists, surgeons, PCP's. I feel I need a case manager to coordinate my care. Maybe I am being too obsessive about this?

The article Ross referred you to is very good.

Good luck in your continued recovery.

Donna

 

[Guest]

Hi Sharon!

So glad that you have found our group. I will be 6wks. post-op tomorrow and can relate to alot of the concerns in your first post. I had a mitral valve repair. My valve was damaged due to a heart attack this summer...yes, I'm young...just 38, with rotten genetics!
Anyway, I think you may find in a couple more weeks you'll start to feel less pain first thing in the morning, an increase in energy (rehab has really helped me in that department...are you in rehab?) and the beginning of feeling "somewhat more normal" than you are right now! I have three kids 11, 6, and 3 and they still can't quite understand why mommy isn't quite her old self yet!
I will be taking Coumadin for around another 6 wks. (thank goodness) and had been doing real well until Monday when I registered a 1.4. So we're working with it again! My appetite really increased around 4 wks and I also love veggies of all kinds (part of the healthy heart diet) so I think that put my level into a tail spin! I'll get it checked again next week and see where it's at. I guess it's all trial and error at first and probably by the time I get the hang of it, I'll be done with it!LOL!
I too have had some nasty mood swings. But as I understand it that goes with the heart surgery thing....Hang in there. Visits to this site help me to keep my head on straight. And if nothing else, I know Ross will come up with something silly to say and give me a laugh! (Thanks, Ross!)
Julia

 

[MarkU]

Hi Sharon,

Welcome to the group. A lot of good people here.

My INR bounced all over for the first 6-8 weeks after my surgery and they were checking me weekly for quite a while. My doctor also had me on a split doseage schedule for a time taking 5 mg six days a week and 7.5 mg one day a week.
My INR stabilized once I got back into a normal routine and diet they cut me back to 5 mg/day. I now go six weeks between testing.
Like others have said, consistency is the key. My doctor hasn't restricted my diet at all; he just advised moderation and not to binge on either foods high in Vitamin K or alcohol.

Good luck,

Mark

 

[medtronic of borg]

?s

?s

Hi ,
I just looked at your b-date. I am two days older then you are. I lucked out ,to the best of my recolection...I stabalized at two months. And having no changes or ajustments since then. It is due (so my dr says) to the fact I keep a very close eye on my diet and my liver has never taken a hit. I am on two heart meds and two others for another condition. Up until my last surgery...had had not been on any meds my whole life.

 

[John Cochran]

valve longevity

valve longevity

Hi Sharon,
Welcome! As you've seen already, there are many knowledgable and helpful folks here. You mentioned your concern about your tissue valve lasting around 10 years. While nobody can absolutely predict how long a tissue valve will last, let me give you some GOOD news!

There are a couple of porcine valve recipients here who got 15 and 17 years out of their valves in the aortic position. Now, two thing are in your favor: First, your valve (the tricuspid) is a much lower pressure valve than the aortic valve. The tricuspid handles the flow of blood from the right atrium to the right ventricle, versus the aortic valve, which handles the blood flow from the left ventricle to the entire body. Lower pressure means less "wear-and-tear" and a lower rate of calcification. Second, the newer generation of tissue valves are better engineered, with some being treated with anti-calcific agents (do you know which valve exactly you received?). The bottom line is that it is entirely reasonable to think you could get 15 to 25 or more years from this valve. Again, no one can say for sure, but 10 years seems to be quite a low estimate for a low-pressure valve.

Best regards,
John