The Ross' Journey

[Robert]

Hang in there big guy Its amazing how much strength we gain when we having the love and support of our family and friends to see us through to better days I know exactly what he's going through at the moment and I found that laughter and keeping your mind off things was the best medicine of all! Thankyou for sharing your experiences with us

 

[ALCapshaw2]

And one of the two of us. Ray was gained 20lbs of water weight and here he is at almost 270lbs!!! All belly =) And me just worn out.

Did his Doctor put him on a diuretic to drain off some of that fluid?

If not, WHY NOT ?

 

[AngelaR]

Did his Doctor put him on a diuretic to drain off some of that fluid?

If not, WHY NOT ?

Yes, they did have him on Lasik for about 2 days, he stopped taking that when he got released on Monday (5 May). That picture is 2 days post op, so he was still pretty bloated. by Monday (5 May) he had peed it all out.

If you look at the one of him playing basketball you will see that it's all gone. I think he topped at 270 and he is down to 232. He went in at 248.

VCU took very good care of us. No complaints. They were right on top of everything. If we asked for something we had it within minutes.

 

[DebbyA]

Angela and Ray,

I just caught up with this thread. It looks like things are going well on all fronts.
You must be so relieved.

Great pictures!

 

[AngelaR]

Hi Debby!

Everything is going very well (knock on wood).

Everyone keeps asking how he is doing and I'm afraid to say how good for fear karma will bite us in the butt!!

His incision is looking SO great. It is all healed up it is now just that bright pink. Which I saw so many people struggling with theirs to heal, I'm worried it healed too fast! His drainage tubes still have scabs but they do look good. I will post an up close pic of his incision tomorrow or tonight.

He is still having trouble sleeping at night. But he never slept well at night. Too many years on the midnight shift I think. But he takes a 2 hour nap during the day to make up for it.

Still struggling to get INR, but that will come (hopefully sooner than later)!

Thanks for checking in on us!

 

[Karlynn]

Angela - thanks for all the pics. I enjoyed looking at them. I saw the one of him on the vent and my first thought was "Isn't it amazing what they can do today!"

Tell him to watch that b-ballin'. His sternum is still healing. But the look on his face is great! And I think he looks good with his head shaved!

What is his INR now. Since he seems to be pretty active already, they may need to be a bit more aggressive in increasing his dose.

Best wishes for a continued smooth recovery.

 

[AngelaR]

Hi Karlynn,

I know, I keep telling him to becareful. He'll either be lucky or he'll learn. I'm just here for the ride ;-)

His INR is STILL at 1.3. They have him at 10mg then 5, we should hear back today if that got him up or not. What a pain in the butt!!

I can't wait until we get our own machine if he stays on the coumadin. Back and forth between the lab and calling the docs.

 

[AngelaR]

Finally got the call back and he is at 1.7 now. He is supposed to be between 1.8 - 2.2 so we are almost there!!!

 

[Karlynn]

Good news! Did they leave his does the same or change it?

 

[AngelaR]

He's doing 7mg and 5mg for two days and then another test. But it will be more like 4 days, as he won't make it to the lab until Saturday, then it will take however long to get the results back. I think he should be right around where he needs to be with this. The 10mg made him sick, upset his stomach and gave him diarreah so I hope he doesn't have to go that high again.

 

[Karlynn]

Angela, I'm not understanding why they lowered his dose when he's not quite in range yet? It sent off a little warning bell for me. I'm also not quite understanding just how they are dosing him. It's sounds like they are giving him 2 days of dosing instructions at a time, testing him and then changing it again. This is a recipe for a swinging INR. It looks like they are just guessing and going "Well, lets try this and see what happens."

It takes 3 days for a dose of Coumadin to show up in the INR. Testing anymore frequently than 4 days is not going to let you know how effective the dosing will be. If someone is terribly low and they test a few days after a dosage change - it should only be to see if the INR is on it's way up. Dosing should be done by adjusting the weekly total, anywhere from 10 - 20%.

If you feel it was the Coumadin that made his stomach upset and gave him diahrea make sure he's not taking it on an empty stomach. If he's an active guy, I'm not going to be surprised if he ends up on 10 or more a day. It probably wasn't the amount that made it upset, but an empty stomach. I take my dose at bedtime and if I haven't eaten in a few hours it can sometimes make my stomach a tad irritated. He may want to take his dose with breakfast or dinner.

Take a look at this source. http://www.aafp.org/afp/990201ap/635.html About 1/2 way down it begins to explain dosage calculations. I would highly recommend educating yourselves on Coumadin management, because it's the best way to see if what the managers are doing is correct.

Next time ask them:
What is his weekly total?
How are you suggesting he divide this up throughout the week?
What percent increase/decrease is this of the weekly total?
and maybe you need to ask -
Why are you decreasing his dose when he's not in-range.

If they tell you - we don't have his weekly total yet because we haven't gotten him in range - This will tell you that they don't really know how to manage Coumadin.

 

[AngelaR]

Thank you I will check out that article.

We are actually going to be switching our management to someone local as we are having such a hard time between the lab and getting the results. The turn around has been 3 days and about 10 phone calls the last one is where I loose my mind on the poor soul that answers the phone. If I have to hear it's protcol to leave a message and the nurse call you back one more time....

He took 10mg last Thur and Friday and then took 5mg Sat and Sun got blood taken Monday. We got the results yesterday (again after threatening the poor guy who answers the phone, I know he cringes when I say it's Angela Ross calling....)

Everytime we call we talk to a differnt NP, so that is probably why they are bouncing him around. When this NP saw he was taking 10 she was like that's way too high. But I thought well it only got him to 1.7.

Like I said we will just follow these instructions and go back Tuesday, cause I am not going to the lab on a holiday weekend. He is still taking the lovenox so he is "safe" until we get his INR up. Hopefully, our local management will be better. By the time we get this all straightened up he will either be switching to the plavix and aspirin or getting a home monitoring machine. Either way that will be one monkey off our back.

He takes his coumadin at bedtime and then he woke up with diarreah. It only happened when they took him from 3 to 5 and then from 5 to 10. I think it is just his body adjusting because when he took the 10 again the second night he was fine the next day.

I think you are right, I think he will have to take a high dosage. Even though he is a big guy, he has an incredible metabolism. His resting bmr is like 1750 cals. Heck, that's about what I eat a day!!

I am so looking forward to this weekend. This is my first week back to work since being off and I am dreading every second of the day. Is it Friday yet!!

 

[Karlynn]

Just an FYI - all INR's should be received STAT. Same day or not at all. People that live in the boonies sometimes have to put up with more than 24 hours. But dosing him on what is really an old INR, by the time they get around to it, is pointless.

An NP that is telling you 10 is too high when she has a patient who's INR is below range knows nothing about Coumadin management. So she lowers his dose, even though his INR is still too low, and expects that to bring him into range. What does she think is magically going to happen? (Her statement drives me crazy - I'd love to have her number so I could call her. ) There is no such thing as "too much" when your INR is in range. Right now I take 13/day. My body is in no greater jeopardy than someone who takes 3/day.

Angela, I'm so sorry you're having to deal with managers that don't know what they're managing. People who are new to Coumadin shouldn't be expected to know how to manage it, which is why it's so dangerous that so many medical people in the US don't know either, because we count on them to know.

I hope my comments aren't making you feel stupid. They aren't meant to at all. I just want to help you get the correct information. The way your husband's INR is being managed right now borders on malpractice. I'm glad he has the On-X, or I'd be a lot more worried for him.

Please get another manager ASAP and look for these things:
-INR results are same day. Dosing instructions are the same day
-They give you a dosage adjustment based on a weekly dosage total - which is arrived at by increasing or decreasing the weekly total by 10-20%. The then divide the weekly by 7 to come up with his daily. Sometimes the daily isn't the exact same each day because it needs to be adjusted to arrive at the weekly total.
-they do not decrease dosing when INR is below range or in range
-they do not worry about the amount of warfarin he's on, as long as he's in range.

Best wishes!!

 

[Ross]

Now why don't I find this surprising?

 

[SHEEPDOG]

Just Great!

Just Great!

I was not too sure about the Coumadin to begin with, then I read this and some of the other horror stories. I do find more positive than negative on VR about Coumadin. It would seem they would have it down by now. Are there that many variables that it is that uncertain? Do Docs regulate this or NP's or ?
Hope it all works out soon. Is the lower INR # the only thing that the on-x has going for it? also, with the study, how long has it been going? Have they had any failures with the plavix/baby asprin?

Good luck and Ill keep a close eye on your posts.
Us "Sheepdogs" need to keep the pack together!
SHEEPDOG 1

 

[Ross]

I was not too sure about the Coumadin to begin with, then I read this and some of the other horror stories. I do find more positive than negative on VR about Coumadin. It would seem they would have it down by now. Are there that many variables that it is that uncertain? Do Docs regulate this or NP's or ?
Hope it all works out soon. Is the lower INR # the only thing that the on-x has going for it? also, with the study, how long has it been going? Have they had any failures with the plavix/baby asprin?

Good luck and Ill keep a close eye on your posts.
Us "Sheepdogs" need to keep the pack together!
SHEEPDOG 1

Sheepdog the largest single factor that make Coumadin dangerous is that the U.S. Medical system has never gotten on the same page about how it works or how to dose it. You'd think by now, it would old knowledge, but what we have instead is old knowledge never once considering new knowledge. Very few Coumadin managers know what their doing. Even fewer Doctors do.

If you want the no bull story of Coumadin and want to put fears, hearsay, and myths to bed, go to this link and begin reading. You should do it anyway when considering valves. http://www.warfarinfo.com/warfarinfo.com2.htm

The website is run by Al Lodwick who is an certified pharmacist and anticoagulation expert. He taught us and we try to teach others. He says we taught him, but reading through his site, you'll see what I mean.

 

[AngelaR]

No, your comments did not make me feel stupid. I can blatantly see that this isn't the RIGHT thing to be doing. But we are, or should say were victims of the circumstances. I mean honestly I can only call and leave so many messages. Surprisinly enough I do have other things to do then call their office 5-6 times a day. And then I have to finally be a b*tch to get them to respond, by the time it's all said and done with I need blood pressure medication.

When the nurse told him that 10 was high he gave me this terrified look and I had to explain to him YET AGAIN that his dosage will depend on how he metabolizes the medicine to get his INR up. But I know he kind of thinks well THEY should know best and that I might just be saying stuff to make him feel better. I have little to no faith in doctors, pharmacies or the medical community in general. This whole process with Ray has given me a little faith back in surgeons, but it solidified the fact that most doctors and nurses don't have enough time after they get their degrees to further their research and stay on top of the game.

I had the one nurse when we were in the hospital tell Ray to stay hydrated he should only drink 4 of those little pitchers they give you a day. No more. Or it would "hurt" him. Then the other one who came on after her said drink little water but drink lots of liquids. I asked her what she meant and she said well nothing that has sugar in it like juice but gatorade is good. I told her gatorade has high fructose corn syrup in it and she asked me what that was. I think my jaw hit the floor.

We had someone come in and start him on the plavix/aspirin regime. I was like uh, why is he taking this now. They didn't know. So I told them to go find out. Imagine this, it was a mistake. hmmm, go figure. Then they were trying to give him some cholesterol pill and I was like why. Big surprise, we don't know we just always give them to the heart patients. I was like there is nothing wrong with his cholesterol, go find out why he was prescribed this, guess what? They took that off the list of pills to give him. It was just unbelievable that I had to ask them everytime they came to give him something what it was and they didn't even know. I know they thought I was a huge pain in the butt.

Then they kept coming in to check his vitals. I asked how often they were going to do this because they kept waking him up throughout the night. We were getting up every 45 minutes or so and the nurse says we do it every 4 hours. Well I told her they were coming in every hour and a half. So they would come in before the 4 hours and I would kick them out. How the heck is he supposed to rest when they are coming in and out with nonsense all night long. I understood the periodic checks but they weren't even following their own system. It was like they were bored in the middle of the night and were finding stuff to do.

They were all very friendly and very helpful, don't get me wrong on that, but their knowledge was lacking.

Ray didn't want the narcotics, he just wasn't in that much pain. His shoulder was killing him but he was managing that with the motrin they were giving him (this was pre-coumadin). It was almost like they were street pushers. The one nurse demanded he take it. Trying to convince him that the pain was going to get worse and that he should take the meds before it got to that point because if it got to that point the meds wouldn't be able to manage the pain. Of course this is post op day 3 and he hasn't had anything since post op day 1.

OK, now I've just gone and ranted up a storm.

Anyways, we go to this new coumadin clinic on Tuesday. Hopefully we have better luck. And no we don't live in the boonies by any stretch of the matter. We are 29 miles from the nations capitol!!!

Sheepdog let me go look up where those studies are so you can read them first hand. I think you'll probably have better luck in the valve selection section of this forum. Choosing a valve really is just personal preference and what you think is best for YOU. Ray was nervous about taking coumadin at first but the more we researched the more comfortable we are if he has to stay on it. However, his choice to be in the study is if you don't have to check your INR frequently and worry about redosage then that's one less thing to worry about.

We went and saw Indiana Jones last night. It was very good. We all enjoyed it. We watched the other 3 to buff up our memories while we were off together. I actually had never seen the 3rd one. And it's FRIDAY!!! Holdiay weekend to boot!!

 

[Ross]

Angela I hope this new clinic has a clue. First off, I know it's an On-x valve but it's near impossible to maintain a very very narrow range of 1.8 to 2.2. You'll be lucky to hit it once a year. 1.5 to 2.5 would be more like it. Bottom line, if you have troubles, we'll help you out and as you learn, help someone else out. Checking his INR every 3 days and changing doses is doing nothing but chasing tails. They need to set him up on one dose and leave it be for full 7 days, then test to see where your at and where to go from there. As it is, he may be put in range, but what dose did it? They aren't going to know.

 

[AngelaR]

Thanks, Ross. We are just staying patient. We can only control ourselves so the best decision we are making is switching to this new clinic. It was obvious after the 4th results we were getting no where with this one and just getting frustrated. Plus it was honestly upsetting me having to call and be all snarky just to get an answer. I'd get all wound up and then have a hard time getting unwound! How fair is that!

I think as long as he is between 1.8 - 2.8 we will be good. I'm not going to fret it. He has been taking just a solid 8mg and through out their 8 one day 5 the next advice. We will see on Tuesday where he is with that and go from there with this new clinic. He will have been on 8 for a solid 6 days by the time we go Tuesday. So we should have a pretty good idea of where he is and what needs to be done about it.

As it is right now we are in no position to offer any advice or counseling on this. We are still too new! =) My best advice to someone who just gets diagnosed or learns they need surgery is to take everything with a grain of salt, prepare for the worst and hope for the best. I've seen so many different scenarios on these boards. Everyone is very different in how they choose their valve, the surgeon, the cardiologist, their recovery, and other illness', etc. The best decisions is the one you choose at the moment and then you stay flexible to changes on the fly. Always remembering you can never control a situation or other people, you can only control yourself and how you react to it.

That's about all the wisdom I have on this subject....heck, any subject for that matter!!

You all have a good day and fantastic weekend!

 

[Ross]

So long as you understand that it's not what you two are doing, but what they are doing to you. If this next place doesn't seem any better, you may have to grab the bull by the horns and learn to self dose. It's amazingly simple and you'll laugh because they fought for weeks to get it right and it took you two weeks tops. The hard part right now is finding his stable dose and remembering that as his activity level increases, his INR will go down, requiring a small upwards tweak in his dose. Make sure he's getting his share of greens too. Don't let anyone pull that diet garbage on you.