Newbie with question

[pinkcollar]

I am delighted to find this group and wondered if the majority of folks are on warfarin/other blood thinners? I am awaiting open-heart surgery, so am taking low-dose aspirin only. But I also need a second surgery because my leg arteries have clogged up again due to aps and wondered why I have never been told to take them. Any thoughts?

[MaryF Administrator]

Hello there and welcome, glad you have found your way onto here. In answer to your question, many people are, personally I am not, I am currently only on aspirin twice a day for my hughes and was given plaquenil, but fall into the small group of patients who had a severe allergy to it. It would really helpl, if you felt like it to write your intro about yourself and your history, so we can see what has gone on to date, and where you were diagnosed etc, and current team etc, this way we can support you further. Mary F x

[Manofmendip]

Good morning pinkcollar and welcome.

I second our very wise Admin lady Mary's advice to let us have more background to your APS diagnosis and management. From what you have described, so far, if it were me I would be pressing to be put on anticoagulation, such as Warfarin or Heparin as well as 75mg Aspirin.

I, myself, had open heart surgery in 2007 and I stopped Warfarin 7 days before surgery and started Fragmin (Low molecular weight Heparin) injections. For my weight I needed a theraputic dose of 15,000IU per day. After the surgery, I restarted Warfarin and I had always been monitoring my own INR, with a CoaguChek meter and managing my doses Warfarin. However, what I didn't know and neither did Roche, who were very helpful when I had the problem, was that something happens to blood during open heart surgery, probably due to it being passed through an artificial heart machine while the patient's own heart is stopped. This meant that my self testing meter was giving INR readings that were double the actual value and this resulted in me stopping the Fragmin far too early and having a TIA when I returned home from hospital. For three months post surgery I had lab tests for INR and when the blood draw was done the phlebotomist also put some on my meter's test strip so that we could compare the readings. Only after three months did the meter and the lab test results come back into a reasonable syncronisation.

Prof Hughes believes that the platelet membranes are damaged by the blood being passed through the artifical heart pump and that this destroys their negative charges, which normally kepp the platelets apart, and thus they clump together and the blood becomes more sludgy. So, I think I would keep Heparin running alongside the reintorduction of Warfarin until lab test of INR showed that the INR was in your thraputic range before withdrawing the Heparin, by first reducing it to a prophalactic dose, in my case 5,000IU instead of 15,000IU, then cutting it out after say another week.

So, in a nutshell: (a) let us have more details of the background to your APS and its management; (b) try to get to see someone who really understands APS, St. Thomas's Hospital or Prof Hughes' team at the London Lupus Centre and I'm sure that they will put you on the correct treatment, Warfarin or Heparin if necessary; (c) come off Warfarin and onto the correct theraputic dose of Heparin for your weight, a week before heart surgery and then convert back onto Warfarin very cautiously, after surgery, using only lab test results for INR for at least three months and gradually reduce the Heparin as your INR reaches its target range.

Lastly, open heart surgery is a major trauma and you will feel pretty rough after it. Look for progress on a weekly basis as you will have daily ups and downs. Do some gentle walking after the first week following surgery and build this up slowly. I had my operation in July 2007; I was able to start cycling again in September, short rides at first but by May 2008 I could do very long rides, in my case a 100 mile ride.

Very best wishes.

Dave

[InSpain in reply to Manofmendip]

A very interesting post Dave, thanks for that. I have aortic insufficiency and have been advised that my valve will need replacing in the not too distant future. So your information has been very useful to me.

I don't know if anyone is aware that having a blood transfusion can sometimes cause the same problems that Dave is describing. I understand that only a very small percentage of people who present with APS experience this problem, me being one of them. I had to be monitored by venous testing for about 6 months until my INR began to stabilize.

As for exercise I currently attend Physio 3 times a week for hydrotherapy. The thought being that if I can strengthen my muscles, under strict supervision of course, then my recovery rate should improve dramatically. It is very tiring but the best form of exercise I have ever done. I don't think that I'll ever achieve a 100 mile bike ride but I can but dream can't I?!!!!!

With all best wishes from here InSpain xxx

[harrio in reply to InSpain]

Hi inspain, I had my Aortic valve replaced in 2004 with a mechanical one, at the time I was obviously worried but when the day arrived it felt like a sense of relief. I knew nothing for the first two days after surgery, but as Dave says look at your progress on a weekly basis and im sure you be be fine. Also like Dave I self monitor my INR levels and it works really well, and I feel a million dollors these days. So best of luck and take care, Harry

[Manofmendip]

Thanks InSpain and Harry for your kind comments.

Dave

[InSpain]

Thanks Harry that's really encouraging to know. It's one of those things that you can't help but feel really nervous about no matter how much you tell yourself it will make you feel better. I'm so glad that both you and Dave took the time to share your experiences with us all. I believe that's what makes this site work so well for everyone.

Best wishes from a very sunny Spain xxx