Blood in urine

[heartfelt]

I'm glad I found this website and only wish I'd known about you all a year ago when I had to have my faulty aortic valve replaced; I was diagnosed with it when I was 6 yo, but physician father told me to live my life and not worry about it, so I didn't really expect to outlive it. I didn't want to have the titanium valve put in b/c of having to be on coumadin/warfarin the rest of my life; but everyone pooh-poohed my resistance and here I am, now on coumadin forever. You may be able to tell I'm not a happy camper about it, so I try to remember that if it weren't for being on it, I might not even be here.

About 6 mos. ago I experienced alot of blood in my urine and I attributed it to partying with friends the night before, but I called my dr. and she ran a urine test confirming it and my INR was high too. I spent the next two days in their clutches getting urinalysis and blood draws done and then had to go in once a week for more testing. It was expensive as well as a monumental hassle. I should have learned from this, but didn't, and I'm now in the same situation, only I haven't called the dr. b/c I don't want to have to go through all that again. Since my finger sticks at a coumadin clinic cost me $40 co-pay and I'm scheduled to go in next monday I was kind of thinking I'd wait this out and see if it doesn't go away like it did last time. I haven't been able to find an answer through the threads I've seen so I thought I'd just throw this out there and see what some of you might recommend. Obviously, I don't want to create a bigger problem, but I also don't want to have to go find out what I already know. It's a given that I shouldn't have celebrated a friend's b/day with more than 3 glasses of wine, but I was tired of "being good" and now I'm paying for it, I think, unless it could be something else. I feel like I'm still trying to figure out how to keep my numbers from being all over the board...and also feeling quite discouraged by the drug, not being able to ski anymore(well, I'm not supposed to) and having to live a life of complete moderation has never been my style so I'm trying to do that too.

I hope someone out there can tell me what I should do about the blood in my urine and if this is potentially serious...

Thank you for reading this!
heartfelt

 

[njean]

Jacqui,

I too have had blood in my urine once or twice in my 30+ yrs. with coumadin & it was attributed to a high INR. I will reinterate what some of the other members of this forum have told you already --- get a pill box! I have a box for my morning regime of pills & then another one for my evening pills. I always take my coumadin in the evenings & try to take it at the same time every evening if possible. And too, see if you can get a home monitor. It would make a world of difference!

Take care & I hope you get back on track!

God Bless,
njean

 

[Bina]

Heartfelt, welcome to the group.
It may have been an idea to start your own thread on this topic of blood in the urine....but if I were you, I would be calling the doctor right away. Good Luck with this.

 

[Mary]

I'm glad I found this website and only wish I'd known about you all a year ago when I had to have my faulty aortic valve replaced; I was diagnosed with it when I was 6 yo, but physician father told me to live my life and not worry about it, so I didn't really expect to outlive it. I didn't want to have the titanium valve put in b/c of having to be on coumadin/warfarin the rest of my life; but everyone pooh-poohed my resistance and here I am, now on coumadin forever. You may be able to tell I'm not a happy camper about it, so I try to remember that if it weren't for being on it, I might not even be here.

About 6 mos. ago I experienced alot of blood in my urine and I attributed it to partying with friends the night before, but I called my dr. and she ran a urine test confirming it and my INR was high too. I spent the next two days in their clutches getting urinalysis and blood draws done and then had to go in once a week for more testing. It was expensive as well as a monumental hassle. I should have learned from this, but didn't, and I'm now in the same situation, only I haven't called the dr. b/c I don't want to have to go through all that again. Since my finger sticks at a coumadin clinic cost me $40 co-pay and I'm scheduled to go in next monday I was kind of thinking I'd wait this out and see if it doesn't go away like it did last time. I haven't been able to find an answer through the threads I've seen so I thought I'd just throw this out there and see what some of you might recommend. Obviously, I don't want to create a bigger problem, but I also don't want to have to go find out what I already know. It's a given that I shouldn't have celebrated a friend's b/day with more than 3 glasses of wine, but I was tired of "being good" and now I'm paying for it, I think, unless it could be something else. I feel like I'm still trying to figure out how to keep my numbers from being all over the board...and also feeling quite discouraged by the drug, not being able to ski anymore(well, I'm not supposed to) and having to live a life of complete moderation has never been my style so I'm trying to do that too.

I hope someone out there can tell me what I should do about the blood in my urine and if this is potentially serious...

Thank you for reading this!
heartfelt

Heartfelt,
Welcome to the group!
I think you will get more answers to your questions if you post, like Bina suggested, a new thread in the anticoagulation forum. And yes, I think the blood in your urine is a matter you need to have looked at by a doctor.

 

[Blanche]

Heartfelt:
Yes, blood in the urine has the potential to be very serious and even deadly. It signals internal bleeding, something that must not be put off. Waiting a week is not a good thing.

It is most likely that you INR is much to high and therefore causing this problem. It is most likely that it will not resolve itself.

Please, please do seek medical attention at once. You really can't wait.

Very worried,
Blanche

 

[Cooker]

Heartfelt????.welcome to the zoo!! I don?t have many words of wisdom for you but I will tell you that there are MANY active people on warfarin. Runners, skiers, mountain climbers and the list goes on and on add infinitum. I have been on ACT for going on two years and have been one of the fortunate ones to have a stable INR. Now, I am not into extreme sports (LOL, sorry) but for the most part my lifestyle has not changed. The key is being consistent in what you eat and drink. I?m sure you will get the hang of it.

 

[Karlynn]

Welcome Heartfelt!
Over consumption of alcohol will cause your INR to go up due to dehydration, if nothing else. If you are throwing up, or so nauseated that you don't eat for a day, you're going to get a high INR. Blood in the urine tells me your INR was pretty high.

In order for us to understand more of your story, your age would be helpful. Also your INR #'s would be helpful too. If your INR was below 5 and you're having the bleeding issue, there may be an issue with your bladder or urinary tract that Coumadin is merely drawing attention to, so you need to let the doctor know about this.

Reading that you aren't supposed to ski tells me that you may be operating off some misinformation about Coumadin. Take a look at how "inactive" some of our members can be while on Coumadin by checking out the Active Lifestyles forum here. I would also recommend you read the sticky at the top of the Anti-coagulation forum (which this thread is on) called New to Coumadin to get some information.

The reality of it is - you cannot expect to go unscathed if you are over-consuming alcohol. Many of us here on Coumadin enjoy our adult beverages on a regular basis, but we also know that over consumption is going to do us harm. People need to understand that over consumption of alcohol regardless of whether they are on warfarin or not is not something that is good for your heart or your body. I would not look at the blood in the urine as a sign that you can't over-indulge like you want because of Coumadin, rather, I'd view it as Coumadin giving you a warning of what over-indulging can do to a body. Coumadin can give us warning signs that those not on Coumadin may not get.

I'm sorry if I'm sounding harsh - but I just found out yesterday that my best friend's 21 year old son is on the brink of liver failure due to his "college lifestyle" of the past 2 years. He's 6' 7" tall and it only took 2 years of the college party life to wreck his liver. The doctor told him that if he stopped drinking now, he'll have a healthy liver again by the time he's 50. I'm certainly not implying that this is your lifestyle. Just mentioning it so you don't feel quite so sorry for not being able to get wasted regularly, your body will be healthier in the long run.

You should check into home testing. You would love the control it brings back to your life.

My guess is your father wanted a mechanical valve for you because he knows that tissue valves don't last very long in younger adults. For most of us here that live life on Coumadin, it really is no big deal - and we aren't couch potatoes by any means (as I sit on my couch typing this ). It sounds like you are already trying to look on the bright side - so more power to you. There are many reasons to be happy you have a mechanical valve. The biggest one I can think of is not having your life interrupted by more valve deterioration and more surgery and recovery. Then there's the fun side - taking people into tiled bathrooms so they can hear your valve tick. (Yes, my friends have been known to ask me to do that at parties .)

As far as living a life of moderation - I don't because of Coumadin. If parts of my life are moderated, it's because it's the way I choose to live my life. I don't feel compelled to be moderated because of any medication I take. Alcohol is the only thing in my life that I consciously moderate, because of Coumadin and because I NEVER want to spend a New Years Day like I did this year. The Cosmopolitans were good - but I should have stuck with 1 or 2.

 

[WayneGM]

Welcome to the VR Community, Heartfelt. Glad you found us.....better late than never. I also found this wonderful site after my OHS.

I can't provide any insight on the blood in the urine, but echo the advice to consult your doctor. It's not something you should guess at. Good luck and best wishes.

 

[heartfelt]

WOW!! Thanks you guys for the advice and words of encouragement. I still find this drug to be very confusing and difficult to manage. I feel as if I've learned so much in the short time I've been here and found you all.

As soon as I read your post Bina, I called my dr. and, as I suspected, they hustled me in for an INR ck and urinalysis. I'm waiting to hear from the dr. right now. If my INR isn't high then I have a potentially bigger problem, so just between us, I'm hoping it is.

I had to have two emergency carotid artery surgeries the summmer I was 55yo. (1999) In fact, I didn't know I even had a problem and had climbed a 14-er (one of our 14,000' mtns. here in Colorado), w/o incident, so getting the results back of a previous ultra sound that I had a 98% blockage on the L and 83% blockage on the R blew my mind. They did the surgeries w/in a month of each other. Then it was smooth sailing until I turned 62; dr. discovered from an echocardiogram that my valve had gone from moderate/severe to very severe, i.e. normal diameter is 20-25mm and mine was at 7. I told the dr. I didn't want titanium valve b/c of the horror stories I'd picked up along the way about coumadin and he said I was too young to think of doing anything else and all the other medical people in my life agreed. So I guess I'm partly angry about being pushed into the decision. At any rate, what's done is done and I now just have to get comfortable with the way it is. My vascular system sucks. Clearly, my guardian angels have been working way overtime trying to keep me here! I teach 6 hrs. of aquacise a wk, 2 hrs. back to back, and can't even imagine being inactive. I about went crazy the three months it took to recover and can still remember the day when I took a deep breath and it really was a deep breath; all that time I had been masking my ability to fully breathe with deep concentrated yogic breathing and thought I was just fine, when really I was barely functional inspite of being very active.

My INR is supposed to be between 2.5 and 3.5 and dr. just called to inform me it is at 6.7. EEEK! So no coumadin for me tonight. She also has told me to see a urologist as, typically, breakthrough bleeding in urine can be caused by the coumadin triggering something urinary that maybe going on, just as you suggested Karlyn.

You are absolutely right about over consumption of alcohol and I seldom do that. I don't drink all the time so that maybe part of the problem too and actually being consistent with eating has never been one of my strengths either. It is the toughest part of trying to cope with this drug; being consistent. I've been craving blueberries all weekend and eaten more than my fair share of them, but I don't expect to match that behavior next week, so I have alot to learn in order to not cause myself alot of problems and I find this annoying. Therein lie the lesson, right? I totally need to get some control with this, partly b/c I did the math and the $40 co-pay to have my finger stuck is killing me financially. It would be more cost effective for me to buy a tester, besides giving me some control back. Next question will probably be about which machine you use or think works best and where I might find it.

I really appreciate you taking the time to address this issue with me! And you can't imagine how grateful I am to have found a support group to share things about living with a valve and related issues! I knew I wasn't all alone out here, but some days it sure has felt like I was.

Thanks again for the encouragement to see the dr. even though I truly didn't want to do that.

heartfelt
aortic valve replacement 21 May 2006 age 62
carotid artery surgeries both sides July and August 1999
AVR valve model 501DA18
63 yo now

 

[Bina]

I'm glad that you got in touch with a doctor....your INR was a bit scary, but it will go back down and you will get the hang of it. My first 2 months on coumadin made me nervous, but now I don't even think about it. Home testing is great, I test every 2 weeks.
I was operated when my aortic valve was at .8cm and I also was compensating for being so short of breath that I really had no idea what a normal breath was supposed to be like. Isn't it nice to be able to breathe?
I hope that your visit with the urologist goes well, please let us know how you are doing. Best wishes.

 

[ALCapshaw2]

Welcome Heartfelt !

With Proper Education, Coumadin management becomes fairly straightforward for most people. One of the Best Places to get that education is on Al Lodwick's website www.warfarinfo.com Read that over, buy his Dosing Guide ($5), and Learn to be CONSISTENT in taking your medication and you should do fine.

I TOO was surprised and disappointed to learn that I had received a Mechanical Valve instead of the Bovine Pericardial Tissue Valve my surgeon had agreed to implant. After reviewing my tests, I KNOW he made the right decision and I have learned to accept and live with Coumadin.

Other than taking that daily pill, my day-to-day life is pretty normal. I do use 7 day pill boxes (one for morning pills, one for evening pills) and a 31 day CHART to record every pill I take (dose and time). This prevents OVERDOSING and 'usually' prevents Missed Doses (or at least catches them in time to make corrections). Works for me (but I'm an Engineer). The Artist in you may rebel at that much 'regimentation'

I encourage you to Learn about managing Coumadin (from GOOD sources and nothing earlier than 1990) and to work on 'acceptance' of your fate. Once you understand how Coumadin works you should be able maintain a better balance.

'AL Capshaw'

 

[Karlynn]

Okay- color me embarrassed a little. Since you said your physician father wanted you to get a mechanical, I assumed you were around 30 - a young adult. Not that you aren't young at 63! (What is that they say about assuming?)

You are at an age where many choose a tissue valve. But many still choose mechanical in order to avoid surgery when they may be at an age that another valve replacement would be quite risky. So there's another reason to look on the positive side.

You learned the hard way (as I have done, without any bleeding, just feeling disastrous for a day and a 7.3 INR) that over-indulging just ain't worth it. I am glad that your doctor wants you to see a urologist to check that out.

Alcapshaw2 gave some good suggestions. I'd also look into home testing. Studies from Europe (who seem to be much more 21st century in their warfarin management understanding than the US) show that those who home test and self-dose have much more stable INR's and fewer incidence of clot and bleeding than those who go to a lab and have it managed by someone else.

If you contact QAS (just click on the banner at the top of any page here) they will do all the leg work for you, get you the info to fill out by you and your doctor, contact the insurance company. etc. If your insurance won't pay, I've recently seen a few sellers on Ebay that sell nothing but INRatio machines and strips at a really good cost. A box of 12 strips from QAS costs ~$156 ($13 a test compared to your $40 copay) My insurance pays for all put 10% of mine. I saw INRatio machines on Ebay for $895 and they came with a box of 200 strips. (An INRatio machine sells for $2450) I would first go through QAS to see if your insurance will pay. But I will never go back to lab testing and would get a home monitor by hook or by crook.

As far as machines - I would go with the INRatio (I LOVE mine) or the Coagucheck XS. They are very similar. Super easy to test on. I used to have the ProTime machine (and was very grateful for it) but it was harder to test on (and a larger machine).

Best wishes - you young thing!

 

[heartfelt]

Gratitude

Gratitude

Big thanks for the helpful ideas!

I do use a weekly pill box, but a whole calendar does seem a bit daunting. If I am to get into control with this I may have to accept being more aware and organized about it. I am still working at getting my head around having to have had open heart surgery to begin with; it came as total shock and had to be acted upon immeadiately. I may still be trying to get back to the way it was b/s...before surgery, and it obviously isn't going to happen. Bummer.

I appreciate knowing about the personal testing machines and what to look for and expect cost-wise. I know having one will give me so much peace of mind and it will help me alot to know I'm in charge of it. Are there charts that guide you about dosages, etc. I'm on 5mg, but the clinic has raised it to adding in 1mg or even 1/2 of that 1mg. with the 5mg when necessary, so now I'm really confused. Before I was instructed to got to 7.5mg once a week and now it seems it's more weekly but in smaller dosages. The clinic also put me on coumadin and took me off warfarin in hopes that a more regulated pill would stabalize me. It seems to me that it's all just rat poison anyway, which also bothers me.

I'll check back with you all after I've heard from the drs. and have a better grip about what's going on. Right now it feels like my body is failing me, but I think it's really the other way around~where I've failed it. Big sigh.

I think I've found you all in the nick of time (pun intended).
heartfelt

 

[Karlynn]

I'd get the dosing guide that Al recommended. Also bookmark this article. It has some very useful charts in it. http://www.aafp.org/afp/990201ap/635.html

Coumadin and warfarin are the same thing. Coumadin is just the brand name. Some people believe that there is a difference in the efficacy of brand and generic, most will say there isn't. I am one of the few that did notice a difference.

 

[MikeHeim]

The clinic also put me on coumadin and took me off warfarin in hopes that a more regulated pill would stabalize me. It seems to me that it's all just rat poison anyway, which also bothers me.

Please don't perpetuate the misconception that generic drugs are "less regulated" or less controlled than non-generics. Every drug company in the US is held to and audited against the exact same FDA regulations, regardless of whether or not it comes in flashy packaging. For anyone who's has slightly different INR results with the generic version, it must have something to do with the inactive ingredients and how your body metabolizes the pill slightly differently. Generic drugs are NOT like generic potato chips. The active drug is exactly the same and there is absolutely no difference in quality from the name brand version.

 

[heartfelt]

Good News/Best News: finding you

Good News/Best News: finding you

Hi All,
Since I don't really "get" most of this, I certainly didn't mean to perpetuate any myth. Please chalk it up to ignorance and lack of experience on my behalf, no harm intended. I'm discovering alot of misinformation, which is one of the reasons I intend to do my own testing eventually.

Thank you for the link! I'll definitely ck that out!

Now that all the drs. have cked back in with me, the good news is that the coumadin clinic didn't want me to rush in there and they have taken me off the C again tonight, then 2.5mg W & TH, 5 on F,S, & S, 2.5 M and keep my appt. on T as planned. The urologist felt it wasn't crucial I get in there either, so I left it with them that I'd call back for appt. if necessary. In the meantime, I have had no more visible blood in my urine since 2 this aft. YIPPPEEEE! But the very best part of all this angst is that I found you guys and you've been so knowledgeable and helpful to me, a complete stranger. I have felt very lost, angry, frightened and alone and I only wish I'd known you were there during the days and months following surgery when I was all of the above but worse! It's never too late.

Thanks again!
heartfelt

P.S. I hope I can be of help somehow to you all too!

 

[Karlynn]

Heartfelt - I had my valve (and thus been on Coumadin) for over 11 years before I found this site - like you - due to an issue with my INR causing me to search the web. We're glad you found us. This site is the single best place for a Coumadin user.

 

[geebee]

Glad you have some instructions to follow. Please be sure and follow up because, if your INR spike was due to the alcohol, there is a chance you could end up too low on a decreased coumadin dose with the alcohol now out of your system.

Stick around, ask questions and you will come to find out that coumadin is not a big bad monster - it is controllable and easy to live with for most people.

 

[heartfelt]

Thanks Gina and Karlynn, I hadn't thought about my coumadin levels going the other way, which of course, they would. The clinic told me to take 2.5 tonight, but maybe I should take the full 5mg. So here I am, once again wishing I had my own monitor so I'd know what to do. I just noticed there is store here. I think I'll ck it out, but kind of suspect that I'll do better on price at the source. I'm also going to ck into the one you like Karlynn. I really have to be more in control on this and I know, that not only will it be cheaper in the long run, but I'll be more at ease instead of worrying all the time if I'm too high or too low. I also think, if I can ck it myself, I'll be less likely to screw it up by doing something dumb like the other night.

I'm so relieved to feel good and not be bleeding due to something more serious.

heartfelt

P.S. I've been meaning to tell you your "Punkin Pie" is precious!! I have been blessed with two adorable grandchildren and they really are my best reason for staying healthy and on top of this.
We nearly lost our granddaughter when she went into tachycardia from a bladder infection. She will be teste when she's 6yo to see if she has the congenital heart valve problem I was born with.

 

[Karlynn]

Thanks so much heartfelt. Unfortunately she lives 9 hours away from us. But my son, daughter-in-law and the Little Punkin' will be here for Thanksgiving.

Your best bet right now for getting a home testing machine is to contact QAS. That really is the easiest way to start. They'll tell you exactly what you need to do.

Best wishes.