coaguchek

[Ray46]

So my letter about the duff test strips finally arrived from Roche late yesterday - large red envelope and large red print on the acknowledgement form that needs to be returned "by 5th September". Which means that since our postbox is emptied before the post arrives each day it will go today and first class would need to take -1 days for this to be possible. Form has been returned with annotation (not too sarcastic, I tried, really) to that effect.

I have also annotated that I have not yet "implemented" the Field Safety Notice as that depends on anticoagulation service advice, and they are still reviewing the FSN in the light of their data. If their data is like mine they may conclude that Roche's idea of "reliable" is about as good as their date ordering.

I guess we wait till November, nervously

[daisyd]

I wonder how many people have died or had a stroke because of their mistake

[Yllek]

They’ve sent us all forms asking us to sign that we’ve basically read their statement and they’re not responsible if INR shows over 4.5 we must get a vein draw.

I haven’t signed and I won’t - my personal mini protest since they won’t exchange test strips!

Kelly x

[leakeadea]

My red envelope only arrived on the 5th September, so how on earth could I sign the acknowledgement form and post it back to them by the 5th?!!

I called coaguchek that same day and because my therapeutic INR range is 3.5-4.5, the person I spoke with said she would get someone more senior to call me. She explained that because I have a high therapeutic level, my INR can easily go above 4.5, (which it did three times last week!!), so I need to speak with someone more medically trained. No one has called me back yet!

I'm pretty much house bound, so can't get out to have vein checks, so will be living on a wing and a prayer till Nov! 🙏

Mind you I've been living on a wing and a prayer anyway for the last couple of years, because I've had to wait so long to get my APS diagnosed, so what's new! 😵

[Tucson]

I'm not interested in their letter but my anti coag nurse rang me today and has responded on my behalf as I spent last week in hospital with a Iliac crest bleed resulting in me having excruciating pain, a numb left leg and a massive heamatoma in my iliac crest. I was kept in all week and have 6 weeks to see if the heamatoma disperses or I need an angiogram to remove it. They tried to do the angiogram as an emergency but I was in so much pain it was impossible. All this has been attributed to my high 4.5 Inr set by st Thomas's, I'm still waiting for a response from st Thomas's. If my Inr goes above my new upper limit of 3.5 they'll send an ambulance for me if my son can't get me there for a vein test.Suddenly my local hospital is falling over themselves to be helpful even though they've not been responsible for my anticoagulation for over a year.Oh Kelly my local hospital is more than happy to exchange strips for me but mine all seem to be ok.

So I've had to cancel my knee op which has pee'd me off massively and now have a possible permanent disability to look forward to with my left leg possibly never recovering.

[Wittycjt in reply to Tucson]

Tucson,So let me get this right you have a hematoma yet your INR is very high, pardon I’ve not been on in a while so I don’t know the big picture here. If I’m not mistaken you’ve already had one leg removed and now you won’t have the other. Regardless I am so sorry you are in this situation I will pray...

[Tucson]

I haven't had any legs removed, I was due a total knee replacement which can not go ahead while I'm so unstable.

From what I can gather from my discharge notes I have a massive collection of blood which was actively bleeding on admission into my pelvic area muscles. After several ct's they still don't know what exactly is bleeding or why but they blame my high Inr. It was 4.5 on admission and usually is. The collection of blood has pushed my organs to one side and is applying pressure to my femoral nerve and has possibly damaged it. I can feel my foot and move the foot normally but the rest of the leg is numb when resting and full of pins and needles on standing. I'm trying to use it as much as normal. I have no idea if the strength has been affected because tbh it already was because of the knee. Until the blood clears and currently we don't know if the blood is clotted or not, their hoping not because they hope it will be absorbed by my body. The pain isn't improving yet but has improved immensely between admission and discharge. I currently feel as though I have a really bad stitch in my left side, I'm suffering really badly with belching after eating or drinking anything due to my stomach being squashed I guess and if I urinate I get really bad stomach ache as I guess everything shifts back into the available space. It's incredibly uncomfortable but they say it should ease over the course of the next 6 weeks. They will do a further ct and Mri to establish the cause of the bleed and if it's still there will attempt to remove it via angiogram. In the mean time I'm to maintain an Inr of no higher than 3.5, ST Thomas's have remained totally silent on that which is a tad disconcerting as it was them who insisted I never go below 4.5. I feel abandoned by them, they've had the info for nearly 2 weeks and haven't responded to me or the local hospital. I was given clexane but as I'm now back in range at 3.5 I've been told to stop taking it.

Hope that helps, feel free to say if not. x

[Lure2 in reply to Tucson]

Hi Tucson.

Sorry about the trouble you have with our illness.

I can not understand how St Thomas could insist that you should never go below 4.5 in INR! Strange.

An INR of 4.5 is a rather high INR and my Hematologist has always been uncertain and afraid to let me go over 4.0. As I understand your INR is very stable when selftesting and that is good at least. Most of us with a high INR have a great difference down to the vein-INR especially if we are LAC and triple-positive.

Hope they let you selftest rather often to be able to follow your INR now.

Best wishes

[Tucson]

Well they did and I guess that's because I had a stroke with an Inr of 4. Tbh I don't think they have a clue about self testing, the Vascular surgeon who was treating me thought it was great and one less thing for him to worry about and said it was great I had all my info from St Thomas as he couldn't get any info from them, trouble is the heamotologist who was advising him at my local hospital doesn't seem to think anyone ever needs to go over 3 as we fell out over it before. They were asking me to self test in hospital rather than wait for the vein results and there was only a discrepancy of .1-.2 between vein and finger.

[Fusch]

I haven’t had a letter from Roche, yet I am using batch 311 and spent the day in hospital yesterday when my inr spiked to 7. Only from the vein it was 5.2

No One I dealt with was aware of the test strip issue