Experience w/ Coumadin?

[Jiddo]

Hi All.

As you may already know, my dad had his tissue valve replaced last Wednesday with a St. Jude mechanical valve and will be taking coumadin going forward. This website has provided a lot of useful information on coumadin, which I have been sharing with both my parents over the last couple of weeks. However, my mom wanted to know if anyone who has taken coumadin would be willing to speak with her over the phone as she has some practical questions regarding others' experience with the medication. My dad is going to be released from the hospital later this week so she is just trying to do some homework on her own. She is willing to release her number or call someone directly, either in the SF Bay Area or out of town. If any of you would be open to a conversation, please send me a private message. Thanks in advance for your help.

Jennie

 

[Blanche]

I'd be happy to speak to your mother about her concerns with Coumadin. I will PM you with my number.

My husband had his mitral valve replaced with a St. Judes mechanical valve in October 1990. He has been on Coumadin since. Perhaps I could share some of the concerns about Coumadin from the position of significant other/spouse. I have been on this board since March 2001 where I learned about Coumadin from readings, other posters, and our anticoagulation specialist, Al Lodwick.

I would also encourage your mother to share some of her concerns right here on this board. THere are so many of us who could share their experiences and give their advice and opinions. Also, it could help the other spouses who face the same circumstances in future.

Kind regards,
Blanche

 

[Ross]

I too, would be more then happy to talk to her. As Blanche suggested, if you can get her in here, it would be so much more beneficial to her.

 

[geebee]

Jennie,

I sent you a PM also. Hope things are going well with your dad.

 

[Rich]

I sent you a PM yesterday as well. I would be happy to talk to her.
Rich

 

[doberman]

No Problem

No Problem

Seems you have plenty of folks to call without calling all the way to Canada but I would be glad to help if you like, send me a PM and I will send you my tel#. By the way I had no practical problems with the meds but the blood test were a little tedious.
Best,
JD

 

[Guest]

She could also look at my website www.warfarinfo.com there are about 650 pages of information there.

 

[Jiddo]

Thanks to all who have offered their support. My mom will be reaching out to you soon to ask questions. I apologize that she has not done so yet...she has been so busy taking care of my dad. For those of you who have recommended she post her concerns on the board, she doesn't have experience with computers or else she would be here all the time! My dad isn't a computer person either, which is too bad.

So, my dad has been home for approx. 2 weeks now. He looks great (better than pre-surgery) as he lost approx. 30 lbs over the last month and a half. However, he is not feeling so great yet. He has complained of major back/shoulder pain, which I know is typical. In addition, he can barely use his right hand. It seems as though the nerves in his right hand may have been impacted by the surgery. The doc said is should be better over time.

On a down note, my dad was discouraged yesterday after attending a coumadin clinic at Kaiser with my mom. I don't know what was said exactly but he was second guessing his decision to get a mechanical valve. Whatever they told him must have made him really nervous. This is a man who has never really had to "manage" his health issues day-by-day so I think the whole idea of managing coumadin is really scary to him. I tried to provide some encouragement and told him not to look back...and that taking the coumadin would most likely eliminate the need for a 4th surgery. I think it's going to take some time and education to feel better about this whole process.

Other than that, he seems to be doing well. He was happy to finally meet his 2 new grandchildren (my son and my sister's new daughter who was born last week).

I'll continue to keep you posted.

Jennie

 

[Ross]

Jennie there are people to this day that do not take Coumadin but insist they know more about it then the manufacturers do. Please please please go to www.warfarinfo.com and read. There are 650 pages of solid Warfarin/Coumadin information that will dispell a whole lot of garbage b.s. that people will tell him or you. You guys have to be the educated ones because the world around you is NOT. We know this all to well in here. Most of us have been on the receiving end of this nonsense info from our own Doctors. I'd like to know what was said to him. I'll bet anything it's another horror story from days of old or just plain another myth that is still being spread by so called professionals.

Please get mom to talk to us or call us yourself with your concerns. Unfortunately, you cannot even trust the people that are in charge of your care for information.

 

[Rich]

Jennie,
As others have stated there are a lot of myths in the medical world when it comes to Coumadin.
After his INR is stabilized it will just be a matter of popping a pill each day, absolutely no big deal.
I have had my St. Jude for almost eleven years and it has not stopped me from doing anything, and I do mean ANYTHING !
I am now fast approaching my 69th birthday and I hav'nt slowed down one bit.
So tell your dad to take it slow and get healed up, this is a new beginning for him.
And if your mom wants to talk, you have my number, or I would be happy to call her.
Rich

 

[geebee]

Jennie,

Have your mom and dad make the phone calls - they will both feel so much better about the choice to go mechanical.

Happy to hear your dad is back home and settling in somewhat. I will pray that his hand gets better. The aches and pains will definitely go away.

 

[Rich]

Well I just got off the phone with Jennie's parents, who are both very nice people.
Hopefully I was of some help and explained the myths about Coumadin.
It was good to hear he is doing pretty well since this is his third valve replacement. As I told him hopefully he will never have to go thru it again in his lifetime.
They were of course concerned about diet when it came to the greens, and I suppose alcohol as well. He didn't mention that but I did tell him with both diet and alcohol, just try to be consistent.
Rich

 

[geebee]

Rich,

Good to hear that they were able to talk with someone. It sounds like you were able to provide some support and comfort during a confusing time. Hopefully things will change and better information is provided from the medical providers but people are lucky folks like you are around to help.

 

[Rich]

Thanks Gina,
It is and always has been a great feeling when you can help someone.
As we all know there are some real idiots out there when it comes to this medication. I feel priviliged that I was part of the original e-mail group prior to this site, and was able to offer my help and support to a few of our members. It turned into a nice friendship with people like Gina M. and Rain.
Maybe it is in our Buckeye blood, since my wife and I are both from Ohio.
Rich

 

[catwoman]

Rich:

That was so nice of you to call Jennie's parents and welcome them to the "Coumadin Club."
I'm sorry her dad had a bad experience at the Coumadin clinic. There is definitely a learning curve with warfarin, but like everything else in life, it's doable.

Will be looking for some words of encouragement soon from Jennie about her dad.

 

[Ross]

Well I just got off the phone with Jennie's parents, who are both very nice people.
Hopefully I was of some help and explained the myths about Coumadin.
It was good to hear he is doing pretty well since this is his third valve replacement. As I told him hopefully he will never have to go thru it again in his lifetime.
They were of course concerned about diet when it came to the greens, and I suppose alcohol as well. He didn't mention that but I did tell him with both diet and alcohol, just try to be consistent.
Rich

From Jennies description, I assume they usually take what they hear from Doctors and the Clinic as gospel and don't question it and this is why the feel so torn. Their hearing one thing from the Clinic and completely the opposite from us. I hope you let them know just how common it is for Coumadin managers not to know what they're doing, that everything they say is NOT gospel and often dead wrong.

 

[Rich]

Ross,
I did let them know about all that.
I think a lot of people, especially the elderly assume their doctors must know what they are talking about. As a lot of us know that is just not the case.
Many of us have had bad experiences with a lot of the so-called professionals.
Like one year when my cardio was on vacation I tested just a little high. His assistant told me to hold everything for five days, and then resume my normal dosage. Of course I didn't do any such thing and took care of it myself. What an idiot he was and he is no longer with my cardio. I heard that after I got thru talking to my cardio about this, this guy was told to get lost.
I also had a dentist wanting to do an implant. He said I could stay on my Coumadin, just keep my INR at exactly 2.0 for four days!! It was all my wife and I could do to keep from laughing until we got out of there. He sent a letter to my cardio about his plan, my cardio called me in a panic and suggested I find another dentist which I assured him I already did.
I'm sure we could all go on for hours and hours about this subject.
Rich

 

[Ross]

Yes we could spend hours on it and maybe one day we will. I've been on Coumadin for 6 years now and I'm not seeing one lick of difference in the knowledge of people around here. Not one. My old Coumadin nurse did take my advice and checked in on Al's site. She has since seen the light and I'm proud to say, knows what she is doing now. We laugh about some of the things she was taught and tried to get me to do. Well ok, maybe just one.

 

[John & Joann]

Joann has been on coumadin since 1971. She would be MOST PLEASED to be of assistance. We have been to 48 states, most of Canada, and cruises to many of the Caribbean ports. No major problems on diet, etc.

Your life does change---mostly for the better!

Send a PM if you would like to take to Joann.

Retirement= twice as much wife, half as much money!!!!!!!!

 

[Jiddo]

Rich, thank you very much for taking with my parents. I spoke with my mom this morning and she said that you were very nice and provided some good, practical information on coumadin. She is going to give me the details of your conversation later today when she has more time to talk. Thanks again for going out of your way to help them out!

Ross, you're right in that my parents usually listen to their doctors. After hearing that the medical profession doesn't always know how to manage coumadin, my fear is that they are going to tell my dad to do something that is going to negatively affect his health. I am going to order Al's book for them so they can do some additional reading. In the meantime, I would be interested to know if there are credible coumadin mgmt resources in the Bay Area that anyone might know of. If so, please let me know.

Thanks again to those that have provided me with their personal contact info. My mom made some add'l calls yesterday and will make more today. This site is so great and encouraging. I'm going to bring my laptop to my parent's house this week and help them navigate through these threads.

Jennie