Observations at CC regarding coumadin

[Randy & Robyn]

I just wanted to share my experiences with the staff at Cleveland Clinic regarding their perception of coumadin therapy. These incidents do not convey the opinions of the entire staff, only those specific individuals I had contact with.

My surgeon, Dr. Pettersson, thought a mechanical valve was a very valid choice to avoid further surgeries and agreed that anticoagulation was not that great of a risk when managed correctly. He is also a strong believer in home testing and self-management.

Upon admittance, while I was lying on a gurney in preop awaiting my surgery I mentioned to a nurse there that I would be on coumadin. She replied, "You mean you didn't want the pig valve? That coumadin is bad stuff." End of conversation with her. But what a great final note before heading for surgery.

Two days postop, I nelgected to apply a few extra seconds of pressure when they removed an iv from my hand. It started spurting blood through the gauze. When the nurse came back, she said I would have to get used to that with coumadin and asked whether anyone had explained to me about the risks and the fact that I would have to stop eating foods with vitamin k in it. She also asked if I used an electric razor and said I would have to from then on. I explained to her how I was acquainted with many people on coumadin and how false those statements were. She had nothing more to say.

My infectious disease doctor, when asked about home testing, believed that the monitors were not very accurate and would only lead to the increased risk of complications.

My cardiologist thought anticoagulation itself was safe and effective but stated that home testing was unnecessary and very rarely allowed and that self-management was beyond the capabilities of many people. He believed it would be much safer and more convenient for me to just get regularly scheduled blood draws.

Randy

 

[Phyllis]

Upon admittance, while I was lying on a gurney in preop awaiting my surgery I mentioned to a nurse there that I would be on coumadin. She replied, "You mean you didn't want the pig valve? That coumadin is bad stuff." End of conversation with her. But what a great final note before heading for surgery.

She should be fired for that comment as you lay in preparation for surgery!

Glad you made an informed choice, Randy and as we say here, the choice you made is the right choice for you and we wish you many happy years ticking away!

 

[Turkey Hunter]

I agree....

I agree....

That nurse should be reprimanded or fired for her comments.
It is never the job of the nurse to offer her medical opinions. That is what your doc is for !!

Ben

 

[Georgia]

Yup - only stupid people take coumadin and only smarties are diabetic. That's a FACT - like you'll bleed to death from a shaving nick.

Randy, I think I'd store up this tale, and make sure it gets distributed to the physicians and quality control people at CC; shame on them. Someone needs to get them to keep their mouths shut. Further, someone needs to give them a primer on coumadin. If they're this ignorant at CC, how can one expect any better at Podunk Community Hospital?????

Gee - you sound like you're doing great. Hope all continues well.

 

[Karlynn]

Wow - that's really disappointing that you got those remarks at CC. Kind of sucks the hope right out of me for the medical community dumping their archaic understanding of warfarin.

Here's the copy of the article on home testing from the UK that Al posted. People in the UK much be much smarter and able to handle home testing. Looks like you may need to pursue the home testing issue as aggresively as you pursued getting your On-X.

Br J Haematol. 2006 Mar;132(5):598-603. Links


A randomised control trial of patient self-management of oral anticoagulation compared with patient self-testing.

Gardiner C, Williams K, Longair I, Mackie IJ, Machin SJ, Cohen H.

Department of Haematology, University College London Hospitals, London, UK.

Summary Several studies suggest that patient self-management (PSM) may improve the quality of oral anticoagulation therapy as measured by time spent within the international normalised ratio (INR) target range. We performed a prospective randomised control trial to determine whether the improvement in quality of treatment afforded by PSM is greater than that achieved by patient self-testing (PST) alone. A total of 104 of 800 eligible patients aged 22-88 years (median = 59.8), attending our hospital anticoagulant clinic and receiving long-term warfarin for >8 months agreed to participate. Patients were randomised to PSM (n = 55) or PST (n = 49). Both groups measured their INR using the CoaguChek S every 2 weeks or more frequently if required, for a period of 6 months. Seventy-seven of 104 (74%) patients completed the study (PSM = 41 and PST = 36). The 'drop out' rates for both groups were similar. There was no significant difference between the percentage time in target therapeutic range for PSM (69.9%) and PST (71.8%). Both groups combined showed a significant improvement over the previous 6 months (71.0% vs. 62.5%; P = 0.04). Changes in time within the therapeutic range in individual patients (+5.86) also showed a significant difference. The quality of warfarin control in both PST and PSM may be superior to that achieved by conventional management in a specialised hospital anticoagulation clinic.

 

[Randy & Robyn]

Wow - that's really disappointing that you got those remarks at CC. Kind of sucks the hope right out of me for the medical community dumping their archaic understanding of warfarin.

That is a great article, Karlynn, and I will be taking a copy of it to both my PCP and cardio. MCRI has an alliance with QAS to help patients get involved with home testing. That will be another avenue I can pursue should my doctors fail me.

I agree with you about being disappointed. I expected a great deal more education regarding coumadin amongst the staff at CC.

And I agree with you all that the preop nurse should be severely reprimanded. I knew better than to believe her but when you are at that stage, your mind is reeling, you are second guessing everything and you do not need such an inconsiderate and ignorant comment from a so-called medical professional to add further mental duress.

I will certainly inform CC when I fill out my patient follow-up questionairre.

Gee - you sound like you're doing great. Hope all continues well.

I feel much better than I expected as well. But I'm not out of the woods yet as far as complications are concerned. I will be much more confident in a couple of months if all is still going well.

Randy

 

[Praline]

Randy...

Randy...

Did you see this article that I posted a couple of days ago?

http://www.medicinenet.com/script/main/art.asp?articlekey=57700

I hope you recovery continues to go smoothly.

 

[tobagotwo]

On this site, we know better than what was told to you by those nitwit nurses. We could also educate some of those docs a bit about home testing.

This is a telling note for people undergoing our type of surgery. CC is rated as the finest institution of its kind in the country, perhaps the world. Be aware that even good doctors develop opinions that are based on swamp gas sometimes. If you want the best care for yourself and your significant ones, you should make every effort to fully understand your health issues yourself, and not just rely on what may be an unthinking comment from a man in a white coat to guide your life.

If you fully understand your situation, you won't have to let half-informed people (including some medical people), do the wrong thing because of their ignorance. In some ways, this is still one of the most poorly understood physical problems around, even in the cardiac specialty. General knowledge in the medical community is most plaintively missing where warfarin is concerned. It's a common enough drug that they should do a much better job training their own about it.

The good news is that you're going to do fine, Randy. You know what's real and what isn't.

Very best wishes,

 

[Randy & Robyn]

Thanks, Praline. That's two articles now that I will be printing out and taking with me.

Did you see this article that I posted a couple of days ago?

http://www.medicinenet.com/script/main/art.asp?articlekey=57700

I hope you recovery continues to go smoothly.

 

[BDMc]

Randy You Are Off to A Great Start!

Randy You Are Off to A Great Start!

And I don't mean with the dimwitted nurse! I am so impressed with your abilty to think and write so soon after surgery! I couldn't watch TV for a few days, and it was at least a week before I enjoyed reading again. I think it was weeks before I even wrote a thank you note! Anyway, it is great to hear from you! All the best, Brian

 

[Natanni]

That nurse was completely inappropriate. She had no place offering her little ideas. One surgeon I was assisting about a month after Nathan's surgery asked what valve Nathan was went with. When I said mechanical he said similar comments, "WHAT? He didn't go piggy??" and I was able to come back with all of Nathan's reasons, that Mayo is 'mooing' now instead, etc. But the moment I was though with that case I had an absolute breakdown. His comments were not asked for, nor did I want to hear any of what he had to say. Thoughtless people.

The other nurse could have hung around to make sure the that the IV site had in fact stopped bleeding, instead of coming up with her comments as well. UGH!

We did hear all about razor in Rochester too. Guess what....Nathan still refused to give it up He eats salads, he does have beer (finding out now that even 3 on Sat night won't affect his INR....) and snowmobiles, and snowmoblies, and snowmobiles....Didn't someone once say they were always cold on coumadin? Someone forgot to tell him.

Nathan met a few guys in cardiac rehab, post op valvers that had their surgery in Duluth. They were given the "Our cardiologists don't believe in home INR testing..." and they were not allowed salads either. I kinda thought that CC would be promoting the newer ideas....

So glad to see you are feeling well. Take care, Ann

 

[perkicar]

Yup - only stupid people take coumadin and only smarties are diabetic. That's a FACT - like you'll bleed to death from a shaving nick.

Randy, I think I'd store up this tale, and make sure it gets distributed to the physicians and quality control people at CC; shame on them. Someone needs to get them to keep their mouths shut. Further, someone needs to give them a primer on coumadin. If they're this ignorant at CC, how can one expect any better at Podunk Community Hospital?????

Gee - you sound like you're doing great. Hope all continues well.

I agree with Georgia-when you get your eval for the hospital, please be sure to put all that down. They need to hear the good and the bad. Especially the things that patients find offensive or lacking in service. For an institution that touts itself as providing "World Class Care" they need to know about anything that doesn't meet that standard!
As far as coumadin went--my teaching consisted of a booklet. I learned a thousand times more about coumadin on this forum than any doctor or nurse ever taught me. Although my cardiologist here was going to see about getting me a machine for home testing, but I haven't pursued it because I've been stable and only have to go once a month, an inconvenience I can live with.
The first time I called in my INR to Dr Griffins office I was told my dose was fine and that I was supposed to keep it between 2 and 3, when my discharge instructions said 2.5-3.5. (this was by his admin asst, the same one who forgot to tell me about my appointment being cancelled last summer).

 

[warrenr]

cc

cc

Here is the link to the Cleveland Clinic Journal of Medicine. You can find a lot info about what you are discussing here. You will find a that there are many contradictions to what was said to you in the hospital. You should print some of the articles and give them to the nurse/doctor.

http://www.ccjm.org/

 

[Marty]

Here is the link to the Cleveland Clinic Journal of Medicine. You can find a lot info about what you are discussing here. You will find a that there are many contradictions to what was said to you in the hospital. You should print some of the articles and give them to the nurse/doctor.

http://www.ccjm.org/

Cleveland Clinic is a great medical center perhaps the best rated overall in the USA for heart.. However prior to my surgery ( I was referred to to Cleveland for my surgery) I checked with two friends, both MD's ,who went to Cleveland for valve surgery.They both had very bad experience's and one barely got out alive. No matter how great the medical center you can still have idiot nurses and more dangerous, ill trained and insensitive house staff. The top doctors are often on the road giving speeches and when home in the dog lab doing research. I elected to have surgery at my local county hospital and have no regrets.

 

[perkicar]

As you said, being highly ranked does not guarantee a great experience. Bad things can happen anywhere, anytime, whether it means surgical complications, insensitive staff, or poor outcomes. At the same time, I have absolutely no regrets about going to Cleveland for my surgery. For me, and my situation, it was absolutely the right choice. And for you, Randy, it sounds like outside of that nimrod nurse, it was for you as well. Everyone who's gone to Dr P has sung his praises. You had gone to Mayo, which is what, #2 to Cleveland?? S**t hapens--you just hope it isn't you it happens to!
Doctors aren't perfect....nurses are way overworked....hospitals aren't staffed as well as they need to be (speaking as a nurse AND a patient). Bottom line, we need to be pro-active choosing our doctors, our facilities, and letting them know when our needs aren't being met.

 

[Randy & Robyn]

Amen, Carolyn. I couldn't have said it better.

Randy

As you said, being highly ranked does not guarantee a great experience. Bad things can happen anywhere, anytime, whether it means surgical complications, insensitive staff, or poor outcomes. At the same time, I have absolutely no regrets about going to Cleveland for my surgery. For me, and my situation, it was absolutely the right choice. And for you, Randy, it sounds like outside of that nimrod nurse, it was for you as well. Everyone who's gone to Dr P has sung his praises. You had gone to Mayo, which is what, #2 to Cleveland?? S**t hapens--you just hope it isn't you it happens to!
Doctors aren't perfect....nurses are way overworked....hospitals aren't staffed as well as they need to be (speaking as a nurse AND a patient). Bottom line, we need to be pro-active choosing our doctors, our facilities, and letting them know when our needs aren't being met.

 

[lance]

Introductions

Introductions

Hello Randy,

Someone should introduce the nurse who spoke with you prior to surgery to the cardiac surgeon who told me that warfarin was just a little pill I'd have to swallow every day and to have my blood tested every so often.

I'm unable to decide which one of them is the most dimwitted or are they equal dimwits.

Glad you're doing so well.

And Perkicar, at least they gave you a booklet.

Cheers!

 

[CCRN]

Of fear and Coumadin

Of fear and Coumadin

I am sorry you had that comment made to you right before your surgery. You would be doing CC a favor if you shared those little scenarios with them.
I am a nurse and often tell my patients I had the same surgery they were going to have which usually puts them more at ease. However, when they ask me about what type of valve I have I smile and say "that's a pretty personal question you're asking there". I don't think two minutes before your surgery is the time to bring up any doubts on the subject.

The truth about the medical community.......those who have never taken coumadin.....is they are scared to death of it. Most of us know and remember very well the negative outcomes of patients we have cared for AFTER a devestating event related to the drug. However, the multitudes of patients who have been successfully managed for years and never have problems are those we hardly ever see. Why? Well, those well managed people aren't admitted to the hospital so we don't get the realization that the drug is a good thing. Last year during a valve inservice the Rep asked how many of us (open heart staff) would rather have a tissue valve than a mechanical. Every person including myself raised their hand. Why? To keep from taking coumadin was the answer from everyone.

Every time I go to the coumadin clinic I'm asked if I'm "watching my green leafy intake". I always reply "I'm eating as much green leafy stuff as I can get my hands on."

On a final note, I fired my last cardiologist for talking down to me about wanting to monitor my INRs myself. I've got it on the back burner right now.
I'm on Lovenox as I am all set to have part of my parotid gland removed tomorrow.

Please remember, we medical types are people too......some nice, some not so nice, some knowledgable and others down right ignorant. I will say I have obtained the MOST insight into my "valve business" on this web site and will be forever greatful to all of you here.

 

[Guest]

My mother always said, "someone had to be last in every class."

A guy who was finishing last in his class at West Point was asked if anyone famous every finished last. His reply, "Yes sir, George Armstrong Custer."

 

[M&M]

Hi Randy, I'm sorry to hear that the nurse said that to you. The only thing I can say is that in the years of having heart disease - some medical people have not progressed with the 'times'. From my own personal experience I have learned that all drugs are dangerous - but how we monitor the drug in our body system is what is important.

I became less scared of taking coumadin mainly due to this website - I think what also helped was that I have a great coumadin nurse in my coumadin clinic. In the very beginning I did have a bad nurse or two scare me with this drug. Oh your INR is to high !!! Yikes - or OH NO your INR is to LOW !!! The first time a nurse did this to me - I e-mailed my surgeon and I told him what that nurse said and I told him she made me cry.. He gave her hell. Then he said - you don't have to have shots - we'll increase your doseage and test again in two days. If your still to low than you'll have to come in and get hooked up to an IV. So, I was very happy then. I would surely be very upset if I was told what you were told just before your surgery. I think I would have screamed - get me out of here. NOW !! Your very brave.

I can tell a few times in the past - my doctors have been amazed that I haven't had any problems with my coumadin. I think its mainly because I monitor my INR weekly and I keep close contact with my coumadin clinic when I get out of range. A good coumadin clinic is a godsend for me. - I'm very reluctant to trust anyone else to doseage me on this drug. I've had very good luck so far. But I do know another lady who has had a terrible time with coumadin. She hates it and she is very much afraid of the drug. But they test her monthly. I would never agree to that with my 'system' - as I'm just not consistent month after month..

Best Wishes
M&M