Rose Testing/Stents

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Update from Rose

Postby radeck » Thu Nov 19, 2009 8:20 pm

Rose just wrote that since her last update, a chronic GI problem she's been having was exacerbated by Coumadin accumulating because she couldn't stomach food because of the GI (gastro-intestinal) issue. As most of us probably don't know and Rose didn't know, one needs to eat and poop regularly while on the Coumadin. She eventually got such bad GI pain that she went to the hospital at the advice of Dr. Dake. Her INR was 10, which of course didn't help with the GI problem. She was there for 10 days and just got back home, is feeling better, and will update everybody in person with more details tomorrow.
Last edited by radeck on Sat Jan 16, 2010 7:55 pm, edited 1 time in total.
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Postby catfreak » Thu Nov 19, 2009 8:31 pm

Wow, INR of 10!!!

I had GI problems on coumadin too. My INR only got to 5.2

Hope you are feeling better Rose!!

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby CRHInv » Thu Nov 19, 2009 9:22 pm

Oh my goodness Rose! I am so sorry this got so crazy. I was just thinking about you last night. I saw a news story that was saying Plavix and Prilosec(sp?) don't work well together. I didn't look into it any further, so I am not sure about this, but I did want to mention it. Anyway, you get your feet back under you and keep us posted. When you disappeared, I figured you were just out burning off all that new found energy! So, for awhile now, please keep us posted, okay?!

Radeck, Thanks so much for the update!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby magoo » Fri Nov 20, 2009 8:20 am

Rose, OMG!!!
I too assumed you were out burning up all of the new energy. I am so sorry to hear you have been in the hospital!!! Please feel better soon and update us when you can. You'll be in my thoughts :)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Rose2 » Fri Nov 20, 2009 8:29 pm

Hi All!
Thanks to Radeck for explaining my conundrum so well. Thanks Radeck!
I am really glad to be home. I thought I had the flu. Couldn't figure it out, but finally gave in and went to ER. Didn't think I would be there 10 days!! Home sure is nice.
I wasn't being monitored well with the Coumadin and the upper and lower GI issues potentiated it. Actually it just accumulates if it is not excreted.
My INR was 10.6 when I was admitted. People were freaking.
They took CAT scans of my kidneys twice. I guess those organs are easily affected by hight INRs because the blood easily passes thru the walls of the structures. Kinda like a ghost walking thru walls.
And it is hard to eat and do all the regular stuff when you are feeling sick.
They gave me 2 units of blood, etc.
But I am feeling better than ever now.
I didn't know I had a huge hiatal hernia, so now I have the right meds and gameplan. Last endoscopy I had did not show one.

You guys all sound like you are doing GREAT!! I am soo glad!!
I was anxious to get home and read how it all went. NO internet in the hospital. No laptop!!
I hope you all have better Coumadin education and support than I got with my Internist (who is pushed out of shape with having to do the monitoring).
But make sure you are REGULAR. Eat your meals consistently, especially amount-wise and make sure you excrete daily (yes, poop, Thanks Radeck!) because if you get constipated the Coumading BUILDS UP!! It does not get old and just go away.
Information I could have used.
So now the Pharmacist at the hospital Coumadin Clinic is calling me to tell me how to adjust my dose.
Today I am 2.06. What are you guys running at?
And be sure to take yourself in for a blood draw/test if you are out of the ordinary for you.
I have to go for now. Glad everyone is doing so well.!!! Yippee!
Thanks to all, Rose
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Postby bestadmom » Fri Nov 20, 2009 8:54 pm

Rose,

I'm glad to hear you are home and feeling better and now have someone monitoring you. Rest up, and have fun catching up one the 1500+ posts from the past 10 days.

Michelle
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Postby CRHInv » Sat Nov 21, 2009 7:03 am

Rose! Ten days! Wow. I am so glad you are feeling better. What a relief. I am also glad you found out what was really wrong. (For anyone else who doesn't know what a hiatal hernia is here is a good link: http://www.mayoclinic.com/health/hiatal-hernia/DS00099) This makes so much sense with your issues, doesn't it? I am so glad you have a game plan for that too. Wow, you are really getting tuned up this year aren't you? You are going to feel so much better!
What did those doctors think of your stents?
Thanks for all the coumadin information. Those are things I didn't know either. Oh, I have only had one reading, but it was 2.0. I will get another one on Monday, results Tuesday.
Okay, if I asked too many questions and you need to rest just ignore me, okay?
Take care!
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby magoo » Sat Nov 21, 2009 11:05 am

Rose,
I am so sorry you had to go through all of that. I am so happy to hear you are feeling good again. I remember how concerned you were about not getting the attention you needed regarding the coumadin checks. How right you were to be concerned. I have a coumadin clinic here. I've been right on track at 2.6 for the past few weeks. Take good care of yourself. Only a few more weeks on the coumadin for us!! My follow-up ppt. is scheduled for Dec. 8th. (7 weeks from surgery) Have you scheduled yours yet?
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Rose2 » Mon Nov 23, 2009 9:35 am

Hi!
I am feeling Oh so much better now. With the Hiatal Hernia I did have ulcers on my esophagus, so they are now healing and I do believe those were a large part of my long term Upper GI problems.
I have an appetite, that I have not had in years.

You asked what did the doctors think? Good question!
The ER Md said I didn't know what I was talking about because they DO NOT put stents on veins. So I gave him Dr. Dakes cell # which he called and then returned more concerned to treat me as needed.

The Xray Techs told me I was off the deep end because No one knows what causes MS.
My Admitting MD who treated me the whole time, said he didn't understand the stents but was very concerned about them and not getting them botched up. So he was open to it, but not all that interested.
The nurses always impress me. Each one, without fail, would come into my room after they had read my chart at the beginning of their shift and want to know more.
A few were also Home Care Nurses who do home infustions and are on the front line caring for MS patients. They never had a closed mind.
They took the TIMS info and the CCSVI info to pass on to MS patients and to go study. Nurses are awesome.
BUT.....drum roll........I do NOT feel like I have MS!!
I feel better than I have in years. Yesterday we walked in the mall, something I have wanted to do for years but could not!
I went grocery shopping. And I am up early and to bed about 10:00pm and am not sleeping all day.
I am back to my laptop work and NO COG FOG!
I had another blood draw at the hospital this am. The Coumadin Clinic is working well. I hope I am able to stay with them.
Magoo, you said not much longer for the Coumadin. How long are we on it? I think I never knew or forgot. I thought it was 6 months. Am I wrong?
I am just praying that when my INR went down to 1+ in the hospital that it didn't clog up my stents. I wonder if a therapeutic dose of Coumadin and Plavix would clear out a stent?
I see Dr. Dake Dec. 11, so that will be great.
Thanks for all of your support. It is wonderful to come here.
Love, Rose
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Postby kinga » Mon Nov 23, 2009 9:54 am

Rose,I'm sooo happy for You!! Hope You'll never feel "msy" again!
My fingers crossed for your Dec appt!
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Postby magoo » Mon Nov 23, 2009 11:13 am

Rose,
2 months on the coumadin and plavix, that's it! We are almost done. I am sorry I will miss you when I come out on the 8th.
I've been having the darn headaches again, pretty bad. Dr. Dake deosn't think it's something to worry about, but will be checking to see if my stents are wide open as they should be. Gosh, I hope I don't have to have another procedure.
I am so happy to hear about how well you feel!!!!!! It's amazing isn't it?
Take care!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby CRHInv » Mon Nov 23, 2009 11:52 am

Rose, What a story! I hate that you had to go through that, but man, you were really productive in there. I am so glad you got the hernia thing figured out. That is going to be so important to you feeling better. Wow! The doctors reactions are a good thing for all of us to know. I guess they would think we were off our rockers. I do love nurses. That is definately a job I would never sign up for, so I am really glad to have them, but also because most of them are such caring and interested people. I hope many people are helped or given hope because of the information you shared.
Now take it easy, heal up, and then you can get back out on the town, where I thought you were the whole time you were hospitalized! geez!
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby mrhodes40 » Mon Nov 23, 2009 1:27 pm

Wow Rose, INR of 10 is frightening stuff, I am glad so many things got figured out for you and you are all back to normal and even better.

May I ask if you talked to your internest about the coumadin and his/her responsibility to follow up after the proceudure?
you wrote
I hope you all have better Coumadin education and support than I got with my Internist (who is pushed out of shape with having to do the monitoring).


For other people reading this PLEASE understand that coumadin is dangerous and you have to have good monitoring by someone who understands that they are signing up to do this for you because Dr Dake is not doing that part for you. They have to be willing and ready to check often. I was checked 2 times a week, most will get by with once a week if they are stable (I wasn't). You should not be springing this on your primary care doc at all, they need to be in your corner and it is a BIG deal to ask them to be responsible for it.

Not to put too fine a point on it, you can die from bleeding to death. It is not fish oil!!!

I mean this gently Rose, but it is a teaching moment so I took it. :wink:

I am so glad you are well and feeling so tremendously great! :D
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby Rose2 » Mon Nov 23, 2009 3:08 pm

mrhodes40,

The Coumadin issue is bigger than I thought it was.
I knew there would be Coumadin only from reading this forum.
I did not know I should contact my Inernist before surgery about the Coumadin. While I was in the hospital Alex said she sent all of the Coumadin information to my Internist.

When I got home and called the Internist office, they knew nothing about it because the Internist was on vacation and the letter was still on his desk with unopened mail.
So the receptionist opened it and gave it to his associate, a cardiologist, to read.

The Cardiologist is the one who read my FIRST INR Report of 4.0 and told me not to come back for 2 weeks!
Then within those 2 weeks I became very ill.

Before I went into ER, my Internist had called me to tell me my INR was 10.6 and so just don't take Coumadin for 4 days and then have another test in a week!!!!!
The Internist office also told me to go back to Stanford and have THEM look at the huge bruise on my stomach!
That is when I called Dr. Dake who told me to go to ER, get a Vit. K injection and get checked out.

So, NO, my Internist is NOT in my corner. I am being monitored by the Coumadin Clinic because the admitting MD who took care of me organized it. We got to be pretty good friends after 10 days!

I am not sure why all patients are not offered the Coumadin Clinic so the Pharmacists can do their job.
My Internist thinks I am a bit of a Wild Card anyway, what with me always running off to Stanford for things like MS attacks, husbands surgeries, stents, etc.

I really am not sure who would monitor me if it were not my MD? Would I have another choice? None I can think of, but if the Internist hated it so much why wouldn't they set up my Coumadin contact?

So, yes, you have a very good point to get someone who really cares about the Coumadin. I am not sure how we would all go about that if our own MDs are not going to care and worse case if our own MDs have a closed mind about the whole stent thing.

I understand that it is 'a pain in the butt' for the MD office but I really do not understand why.

So now the Lab sends the INR to the Coumadin Clinic and the MD.
I get Coumadin advice from both. The Internist is still WAY OFF.
Not even close to what the Coumadin Clinic is advising.
The Clinic is testing me every few days and the MD is happy to let me go another week or two AGAIN!!!!!!!!!!!!!!!!!!
No Kidding!!

So, I guess my advice to everyone would be to talk to your MD first, I did not, and if they really make a face about it, then ask to be referred to the Coumadin Clinic for your monitoring. I am sure everyplace that draws blood has a Coumadin Clinic, or where ever they send it.

I had 2 units of blood in the hospital, my Hemoglobin got to below 7.0.
I know I had other issues and I really do not know which came first the chicken (High INR) or the egg (my other issues).
My gut feeling is that the INR was high for at least a week before I was tested the second time, 2 weeks later.
THAT IS TOO LONG.
You will have a standing order for your INR so don't be afraid to go in and get tested earlier if you think something is amiss.
You can get the number for the Coumadin Clinic also and talk to them.
They are the ones sending the INR report to your MD anyway.
Sorry so long. Hope it is not too disjointed.
Thanks, Rose
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Postby mrhodes40 » Mon Nov 23, 2009 4:54 pm

Oh my Rose, I am so sorry that it happened that way! How dreadful overall! How indifferent that doctor seems to have been. that is not how it seems it should be.

Thank you for sharing your experience so others can learn, and for taking time to say how it was. I am just floored!

We have talked about making sure your home doc is on board before you go to Stanford in the past, how did we stop getting that information across for the newer people?

I really am not sure who would monitor me if it were not my MD? Would I have another choice? None I can think of, but if the Internist hated it so much why wouldn't they set up my Coumadin contact?


This is how it went with my doctor. I told her what I planned to do and that when I got back she'd be in charge of monitoring my coumadin. She liked the model very much and agreed to talk to me on the phone after my MRI if I wanted to chat about it. I called, explained the big occlusion, told her we planned surgery for the next day, and I'd be home Friday. She said come in Sat. and see me, and encouraged me that my decision sounded good. She called Dr Dake and spoke with him about the work and about me. I went in Saturday and she drew my blood for INR herself so we could get a stat check. She called me that night and told me I was low and to take another .5 for Sat and sun and Mon recheck Tues.

That is how it went for the whole 2 months. I am a nurse, but nothing was neglected and I feel terrible that it happened the way it did for you. We don't have a clinic here so I could not do that, but we need to share the clinic idea with others maybe let people know that when they talk to their own doctor they can ask about a clinic for the follow up instead of expecting the regular doc to keep track of it. That might take some pressure off if he doesn't like it so he can say (maybe with relief) yes, do the clinic. Docs won't be on the spot then maybe. :idea:

Here's the reason it can be a problem: the people get tested and the results are called in, a nurse or medical assistant takes it and enters it into the chart the doc has to review that chart every time and see what dose you are on and re calibrate the dose, then document it and get someone to tell you what dose to take now, document that, and when to recheck. THe person then has to order the recheck or at least set up a standing order for you to go in to the lab. It is VERY labor intensive and fraught with places for failure/missed data and potentially malpractice. Especially if a very high level happens and you get hurt from it if someone in the documentation chain dropped the ball that person is responsible. AND they can't charge for all this monitoring, so it is a lot of paperwork that demands it be done well for no real $$$. Doctors do not like it, it is a strain on staff, potentially risky, and demanding. I LOVE the clinic idea, that removes all the headache and puts it in a place where that is what they do all the time.

How can we make sure we share this with others so they are prepared?

I am loathe to offer another sticky, but maybe a coumadin sticky?

sorry for the hijack Rose but this is important--the nurse in me wants to give people the best information so they can be educated patients...People who know more are better patients.

A coumadin of 10.6 makes the hair on the back of my neck stand up.... 8O
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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