% Oxygen Saturation & APS ?

[WendyWoo50]

If you read the posts you will probably know that I have had problems with AV Heart Block causing me to have a low pulse. At times as low as 19bpm. It's a month since my admission to hospital and I've been home three weeks. I have to regularly take my pulse, which is now between 44 & 52 while I'm awake. The little finger monitor also measures the % Oxygen Saturation. I have noticed mine tends to be between 88 & 93 % with occasional readings of 97-99. Literature says oxygen is required when % is under 90

My questions are :

1) Does APS cause low oxygen saturation ? My target INR is 4 (3.5-4.5) under 4 I feel more ill. Currently my INR is 3.3.

2) If thick blood causes my muscles to hurt is it because they are not receiving the level of oxygen they need?

3) Does anyone have oxygen, if so is it helpful?

Many thanks 💋

[GinaD]

I wish I knew. Sorry , but I hope you get some suppotive info soon.

[Lure2]

I can not answer so much as I wanted to, but what I know is that our thick blood makes a lot of damage by micro-clots and emboli to a lot of organs. Heart, lungs etc and therefor we need a Specialist who understands these issues and have had patients like us before. They know what to look for and what may be caused by our illness.

I know you have told us about your erratic and sometimes low INR. Probably you need a high INR around 4.0 (like me) for your heart, lung etc. Hope you have seen a Cardiologist and Lung-Specialist also. Try selftesting also. Do you have Lupus Anticoagulant?

Best wishes

[WendyWoo50 in reply to Lure2]

I'm always grateful for ur replies

I have an excellent cardiologist in London

I was checked out last year by a lung specialist - no problems showed up.

My target INR is 4. I'm much better when I am 4+ but that's easier said than done!

Life is such a fight! 💋

[Lure2]

If you do not have Lupus Anticoagulant it would not perhaps be so difficult to keep your INR in range by selftesting?

You have told us that your INR is so erratic. If it is not now that is fantastic as I guess that your Cardilogist and lung Specialist want you to keep the INR in range.

Have they done an Echocardiography?

I think that if you can keep an INR of 4.0 that should be enough. I have never heard a Specialist talk of an INR over 4.0. You have to be healthy and rather young to have a higher INR. How do you know that 4.5 is better? There can be a bleed also but very rare.

Kerstin

[Wittycjt]

No Aps does not necessarily cause low oxygen saturation. So it may be due to your low heart rate not getting your oxygen around as you need it. Have they given you any meds to increase your heart rate?

[Lure2]

I have reread a bit from earlier questions. I wonder if you have made an Echocardiography with doppler as you are breathless. What does your Cardiologist say?

I have had an uncle (he was old and he is now dead) and I believe he had APS. When the Cardiolog notised he had a puls under 45 they did a bypass-operation and he was better.

I only hope that you see the people who understand this tricky illness who can hide very well. He earlier had migraine and a stroke among other things I know of. They did not know this illness that time.

Kerstin

[WendyWoo50]

Thank u all. I'm currently back in hospital. Slowly they r doing the tests. Makes sense 02 is related to low pulse.

I know when my INR is between 4 & 4.5 because the constant headache reduces to a 1/10 or 2/10. Pains in my leg muscles lesson I can walk further, I'm less fatigued, my mood is better, life is better. It makes a massive difference.

When INR is lower those symptoms return often I'm crippled by pain find it hard to physically lift my legs and sleep all day, feel sad and low and headache can be 10/10 totally debilitating.

I am lupus anticoagulant positive

[Lure2]

It can be very difficult to be Lupus anticoagulant and on Warfarin selftesting. You need to have a test with the machine quite often to follow your INR and a Fragminshot to take when the INR is under its therapeutic value.

Also to know if the machine-value is about the same as a vein-test or how much it differs taken the same day with a couple of hours between. It is the vein-test number that is reliable for us.

Hope you get a Specialist who understands our illness.

Sending you warm wishes from a warm heart but cold Stockholm

Kerstin

[WendyWoo50]

Thank u.

I don't self yest I take Clexane when 💤3 or less

I have a rheumatologist specialist who gets all the autoimmune and a hemstologist who gets aps I'm lucky!

Thursday 2pm finger test INR 3.0 4pm vein 3.6 ?

[ndstephens49 in reply to WendyWoo50]

Wendy, I have issues with low oxygen saturation. In 2005, after an airline flight, I ended up in hospital with horrible headache and it was discovered my oxygen levels were in the 70’s to 80’s.

I was then put on oxygen 24 hours a day for 18 months. Since then, I am in oxygen at night only. None of my doctors is quite sure why I need oxygen.

I also have a severe heart block and got my first pacemaker at age of 59 in 2008.

I was having episodes where my heart was stopping. Now with the heart failure, I have a new pacemaker because it is a defibrillator and it also synchronized the beating of my ventricles. This has made me feel better.

Interestingly, I have taken a good bit of Rituxan for my vasculitis. We discovered that not only did the vasculitis improve, my oxygen concentrations also improved.

Good luck!

Nancy in West Virginia