Blood in urine

[geebee]

You are so right, home testing is the way to move forward. You can test at your leisure and whenever you feel things are not right or promply after making changes. It frees up more than your time.

QAS will help you get through the insurance muddle.

Best of luck to you.

 

[maggiemay]

inr hometesting

inr hometesting

Dear Heartfelt, I know how hopeless things felt for you because I felt the same as you, like no one realy cared! Then I too found this forum and have learned more here about coumadin then any of the drs. have ever said to me about it. I just got my home tester and this is my 2nd hometest I have done on my own, boy what freedom after going for weekly draws for the last 71/2 months. Keep at the ins. company and if they will not provide it I strongly suggest you purcahse it yourself if possible.

 

[Ross]

Can you make toast in a toaster?

Can you remember your name everyday?

If you can do these two, you can hometest and self dose.

I'd need a whole lot more about your dosing history, testing, eating habits etc, before I could even begin to tell you where to start. I can say that yours sounds like the classic case of a place managing something they know nothing about.

 

[heartfelt]

I am now reduced to absolute tears and wishing I had insisted on the porcine valve just so I would not have to deal with the coumadin and all it's inherent confusion, at least for me.
After a test of 6.7 last week (and blood in my urine, which helped me find this forum to begin with) then the nurse telling me to skip my dosage on M & T, do 2.5 W, 2.5 TH, 5 F, 5 S, 5 S and 2.5 M, I went in today and had a reading of 1.3, which is far more dangerous for me than being too high, given my titanium aortic valve replacement. I feel so sad and stupid that I can't seem to find a balance with any of this. I am on a quest now to get a home testing machine, b/c I need to go in and be tested on monday and we're planning on being out of town, which will now mean a full on blood draw which isn't pleasant for me, given my terrible vascular system and then the results will need to be faxed to the clinic and I'll have to wait for call about the results. I am struggling with not being a big baby about this, but it's really beginning to take it's toll emotionally as well as physically. I am going to try and ck with our ins. and see if anything will be covered with them for owning my own machine, but I have my doubts given they are the ones asking the $40 co-pay. I am far more concerned about having a 1.3 reading than blood in my urine although, of course, neither are good.
I am basically a very cheerful person, but this whole thing is wearing me to a frazzle.
Ross, I appreciate your being willing to help guide me through this maze! I read your notes about all the things re coumadin/warfarin and those threads are way more informative about the real world and being on this drug than anything else I've come across. In fact, if it weren't for those informative threads, I might be on the verge of giving up and throwing in the proverbial towel.
I also appreciate your help and kind words Maggiemay. It helps me alot knowing I'm not alone out here and that I can learn to manage this instead of it managing me.
I'm all ears if anyone knows of a cheap solution to this problem since I'm relatively certain that my ins. co. will be of little help.
heartfelt

 

[Lynlw]

I'm sorry you are having so many problems. I would be if you would post a list of what you took when and what the INRs were the people here can fgure out what is going wrong and get you on the right track. Lyn

 

[Ross]

After a test of 6.7 last week (and blood in my urine, which helped me find this forum to begin with) then the nurse telling me to skip my dosage on M & T, do 2.5 W, 2.5 TH, 5 F, 5 S, 5 S and 2.5 M, I went in today and had a reading of 1.3.

If I read this right, you had no dose Monday and Tuesday then 22.5mg for the week to yield that 1.3. What was the dose when you hit 6.7? Sorry if you posted it before, but I'm lazy today.

Provide as much info as possible. It shouldn't be the problem that is for you.

 

[KristyW]

Heartfelt,

Don't give up. There's something you can do for us though. In order to see what has been done to make your INR swing we need to know your weekly dosage before the 6.7 reading, then what was done since. It looks like you took 22.5mg of Coumadin/Warfarin last week.

Generally it is recommended that any dosage changes either up or down should not be greater than 15%. Most of us will only change 5-10% if given the choice. Small changes are easier to track and don't cause big swings in your INR.

The real question is...what caused your INR to spike in the first place? Were you fairly stable before that?

Again, don't give up!!! You'll get the hang of it.

 

[Karlynn]

Since it sounded like your 6.7 was alcohol related, that tells us that a day or two hold and then resuming normal dosing should have kept you from going low. If they had you hold and then reduced your dose, it stands to reason that you'd go low.

If you'd had a 6.7 and didn't know why, then a hold plus a decrease in dose should have been in order. If you didn't share the fact that you had a little too much fun celebrating - then there's no way for the warfarin manager to know that there was a specific cause.

Lyn is right - we need INR's with accompanying doses.

For example:
INR 2.7 dose for the week leading up to the 2.7 70 mgs.

Please take a deep breath. panicking about this will cause you to not be able to think logically or retain the information that you are hearing and reading. You may want to call your doctor and ask about Lovenox injections until your INR gets close to range. That should protect you from clots and take that worry away.

 

[Bina]

Heartfelt, hang in there.
After your INR of 6.7 your coumadin nurse had you hold for 2 days and then half dose for 2 days, that was clearly too much of a decrease and swung you too far down. Don't worry, everything is fixable.

 

[heartfelt]

Thanks for your responses! The week of 4 Nov. It was scheduled as follows: S 6mg, M 5.5mg, T 5mg, W 6mg, TH 5.5mg, F 5mg, S 5mg and then I blew it at the b/day party on sun., ended up with the blood in my urine and my blood test was 6.7. So then the clinic put me on M O, T O, W 2.5, TH 2.5, F 5, S 5, S, 5, M 2.5 and here I am today at 1.3. At least I'm pretty sure this is how it all was supposed to be. I was sick yesterday with a stomach bug and didn't eat much at all. What they have told me to do now is: Today 5, W 5, TH 5.5, F 5, S 5, S 5 and then get another blood draw on monday since we're going to be out of town next week. They will fax results to the the clinic and they will call me and tell me how how to proceed. Can it get anymore complicated?! Plus, blood draws for me are not usually easy so I'm definitely not looking forward to that. Come to think of it, the 6mg. is something new they started to do do and I'm not sure what my INR was that caused them to do that, but I think it was only like 2.1 or 2.3 or something that doesn't seem to me to be that big of a deal.
Does this info help you figure out what's happening? I so want to understand this and seem so lost. I usually don't burn the toast Ross, but I like to keep the option open. I appreciate your condifidence that I can learn to do this. I'm eagerly looking forward to the day I can laugh at how I am right now.

It has freed up my mind alot about what I can and can't do from reading other threads and that alone is making this whole thing more tolerable. I guess one of my worst moments was being informed it's rat poison and then knowing how it works for the rats. That's the part I try to stuff into the very back of my mind.

You have all been relegated to genius status in my eyes.
heartfelft

 

[KristyW]

Crazy INR for Heartfelt

Crazy INR for Heartfelt

Ok...here's what I'm getting from your post.

Week of 11/4 Su 6.0, M 5.5, Tu 5.0, W 6.0, Th 5.5, F 5.0 Sa 5.0 for weekly total of 38.0

High reading of 6.7 on Monday Assume that you took your regular dose on the b/day party day - Sunday
Su 6.0, M 0.0, Tu 0.0, W 2.5, Th 2.5, F 5.0, Sa 5.0 for weekly total of 21.0 A 45% reduction. INR today 11/20 1.3.

This weeks upcoming dosage
Su 5.0, M 2.5, Tu 5.0, W 5.0, Th 5.5, F 5.0, Sa 5.0 for a weekly total 33.0
This will be a 14% reduction from the 11/4 dosage. Reasonable.

Now to the INR spike. I've "overindulged" myself on several occasions, but I've never had it show in my INR, but then again everyone is different. I know that our resident "Yoda" of Anti-Coag therapy had a patient that overindulged for Bronco games, but that really just caused another condition to cause a bleed & the coumadin made it last a little longer.

Heartfelt...I really would encourage you to try and get to the bottom of the INR spike and the blood in urine. The Coumadin/warfarin didn't cause the blood in the urine, but it caused it to show up sooner or more dramatically.

I also would heartily (pun intended) encourage you to track your weekly dose of Coumadin/warfarin and the resulting INR. That way you can see trends easier. AND if an INR reading is out of whack think back to the past week about anything different you did...such as started antibiotics, started a new exercise regime, started a new diet. It really does help and it doesn't take a lot of time.

Hope this helps.

 

[Karlynn]

Thanks for your responses! The week of 4 Nov. It was scheduled as follows: S 6mg, M 5.5mg, T 5mg, W 6mg, TH 5.5mg, F 5mg, S 5mg and then I blew it at the b/day party on sun., ended up with the blood in my urine and my blood test was 6.7. So then the clinic put me on M O, T O, W 2.5, TH 2.5, F 5, S 5, S, 5, M 2.5 and here I am today at 1.3. At least I'm pretty sure this is how it all was supposed to be. I was sick yesterday with a stomach bug and didn't eat much at all. What they have told me to do now is: Today 5, W 5, TH 5.5, F 5, S 5, S 5 and then get another blood draw on monday since we're going to be out of town next week. They will fax results to the the clinic and they will call me and tell me how how to proceed. Can it get anymore complicated?! Plus, blood draws for me are not usually easy so I'm definitely not looking forward to that. Come to think of it, the 6mg. is something new they started to do do and I'm not sure what my INR was that caused them to do that, but I think it was only like 2.1 or 2.3 or something that doesn't seem to me to be that big of a deal.
Does this info help you figure out what's happening? I so want to understand this and seem so lost. I usually don't burn the toast Ross, but I like to keep the option open. I appreciate your condifidence that I can learn to do this. I'm eagerly looking forward to the day I can laugh at how I am right now.

It has freed up my mind alot about what I can and can't do from reading other threads and that alone is making this whole thing more tolerable. I guess one of my worst moments was being informed it's rat poison and then knowing how it works for the rats. That's the part I try to stuff into the very back of my mind.

You have all been relegated to genius status in my eyes.
heartfelft

I'm starting to understand why you are so frustrated. They have you on crazy dosing. I don't understand why they have you taking 3 different sizes of doses throughout the week. They have you taking 6's 5.5's and 5's. Why the 5.5 for two of the days when they could just turn one 5 day into a 6?


What have your weekly doses been prior to the dose before the 6.7? How often have they been changing your dose. I suspect (and I may not be correct) from looking at the daily doses they have you on, they might be adjusting your dose too often. They might be trying to micro-manage your INR.

Start keeping your own chart that consists of your weekly dose and the INR for each test. Your week (or weeks) should start the day you test. Start thinking in terms of your weekly dose - you'll go nuts if you look at each day. The daily dose only serves the purpose of spreading our your weekly dose into 7 days. The key is to try and divide up the weekly dose into 7 days by using the size pills you have on hand.

If changes need to be made to your dose - it's done by the % of your weekly dose. Ask your clinic - when they change your dose, by what % they are changing it. They should be able to tell you the %, if not, they're not using dosing protocol.

So long story short for now - if they don't know that the high INR was related to alcohol consumption they are thinking that the dose they had you on was just too high and are thinking they need to lower it, rather than just hold a day or two and resume your usual dose. When alcohol affects your INR it's not the alcohol from having a few cocktails and getting a buzz. It's getting out and out sloshed followed by hangover from dehydration. I've been buzzed - but on New Years I was sloshed. I knew exactly why my INR was so high. I held a day, 1/2 dosed the next day and resumed my usual weekly dosing and I was fine. (And I won't be doing that again - I felt like the toilet seat of a men's restroom at the local gas station!)

You need to take a look at your last several INR readings and the doses you were in order to see how you've truly been doing.

 

[Ross]

I'm seeing a definate picture developing, but don't have enough information just yet to say one way or the other.

 

[heartfelt]

Wow Karlynn, I think you are right about micro-managing me. I feel totally micro-manged and since I'm pretty good at micro-managing my diet to begin with (I have had eating disorders in the past) this is familiar territory for me. However, I don't like not being in charge and being able to make my own choices, especially food choices; I've been mostly vegetarian since I was 12yo. I have been rebelling about all the no's I was given while still in the hosp. and in that fragile state of mind that seems to follow OHS. (Although my surgeon refused to believe it even existed). I told the clinic and my internist about overindulging with alcohol that night so I assumed they would make the right adjustment with my coumadin and maybe that's why they went to adding in a 1mg pill to the program. ?? They didn't say. I am learning from you all that I need to be more vigilant and ask more questions and be more in charge of it all and I think having my own testing machine may give me some control back. Having never had any math skills this seems like a giant, complicated story problem to me and I appreciate being able to ask and get unjudgemental answers back from you. I can't believe I didn't even realize there is a set number I should have every week...never even thought to add it up for myself. I'm learning something new everytime I log on here! Oh, my dosages have always been all over the board, but once for two months, they stabilized and I flet I had a grip on it but then it all went haywire again. It gets really bad when I've had to be on antibiotics and seems very erratic for months afterwards. Yesterday I was told that I might be in a small % who are sensitive to the drug. I hadn't heard of that until yesterday. I was also told that there can be a discrepancy in the strength of the drug and that coumadin stayed more stable, but all this is from people I'm becoming highly suspect of.

My internist was a bit insistent about me seeing a urologist but when I called them and told them what had happened with the blood in the urine they said that could happen given my recent partying. I am curious about it being a cause of something else and now think I should call and get appt. per my dr.'s request. Afterall, she's saved my life three times due to her seeing to my getting tests and listening to what I've said.

For now, I'm enjoying the holiday. I have to get a blood draw on monday; we're going out of town for a week so I probably won't be able to ck back in here for awhile.

I will be filling my heart with thanks tomorrow for finding such caring people who are willing to help me on this new confusing path. And excercising moderation at the table.
With gratitude and thanks for your help and goodness! Have a wonderful holiday everyone!
hearfelt

 

[Karlynn]

You'll learn. Start telling yourself that you can gain control over this and it will help you to start seeing the forest for the trees. If you'd like, I can send you my Excel chart that I use to keep track of my dose and INR. (If you have Microsoft Office). Just PM me your email address and I'd be happy to send it.

I do think you need to see a urologist. If the blood in the urine lasted only a day or so, I'd say that it's possible it was just the high INR, but since it sounds like it continued past a day, it says to me that there might be another issue that was aggrevated by the higher INR. As we say here "When in doubt - check it out."

Have a great Thanksgiving - enjoy the food you want to eat!

 

[heartfelt]

I'm shouting from the rooftops!!!! My INR is 3.2!!! Within my 2.5-3.5 range for the first time in months and I think it's b/c you all gave me the good advice to quit worrying about it, get on with my life and quit obsessing over being on coumadin. You should probably all be charging mental health fees as you are definitely helping to keep me out of the psychiatrist's office. I also appreciated the encouragement to start cking my levels on my own, giving me further control and less worry. I am so glad to know about the different machines out there and what works for you so I can make a more informed choice when I am able to.
Hubby is putting his desire for a flat screen TV on hold in order to accomodate the cost of a machine, if my ins. won't cover it or we run into other roadblocks and need to ante-up the cost for it ourselves. Now, that's love! I know he's grateful for my finding you too since he doesn't need to feel so frustrated that he doesn't have the answers for all my questions and you do.
Again, with gratitude!
heartfelt

 

[Karlynn]

Congratulations! Keep up the good work! In a year - you'll be here giving advice - instead of asking for it!!!! Here's hoping your ins. will cover it so your sweet hubby can get his TV.