Without knowing your particular situation, it is hard to make a comment. The treatment by your doctors does sound odd though. You need to fight for yourself!! Do you have a primary care physician? Get an appointment, and get educated. Talk to them about your concerns. If you are worried about another clot, get to the ER.

When I was released from the hospital I was on Lovenox. This medication decreased my appetite. The Coumadin I am also on gave me headaches for several weeks. Each person reacts differently to medicine.

Also when I was released, my doctors told me that I had suffered some lung damage and that I needed to use my lungs to repair them. If I didnt force my lungs to work, they being a lazy organ, would be happy working at only 50% capacity. So, I started moving as soon as I got home. Of course, it was only what I could tolerate which was about one flight of stairs. I have steadily increased that and joined a gym.

If you are concerned at all, go to the doctor. It is better to be safe.

They should have discharged you with instructions, ie follow up with your primary care doc. Your primary care doc would normally coordinate care during your recovery. As far as exercise, my doc wanted me up and around even when I was in the hospital. I had a DVT and PEs in both lungs. But a doctor should be consulting with you on this.

Call the hospital if you need guidance on what to do if there was absolutely no information provided to you after you were discharged.

Are you located outside of the US?

Thanks for that. I was given nothing - not even a leaflet to tell me what it is I have and what is going on. That's why I am quite scared.

I am in the UK on the NHS so it really is just a patch up job. I have seen a doc once for 5 mins on the ward. I do not have a primary care physician because you don't get one over here.

My injections are all administered by student nurses - there are no docs around. Calling the hospital would do no good - you would not be able to get through to anyone.

Thanks for the advice on lung exercises and exercise. I have been keeping active within reason even in hospital and I have been keeping my feet raised. I have also booked myself an appointment with my own GP for Wednesday.

I guess all I really want is reassurance and advice on what I can practically do....thank God for this forum!

I would follow up with your primary doctor ASAP. Everything you describe sounds normal to me, but I'm not a doctor. It sounds like you need a good sit-down with a doc to get some of your questions answered and to put your mind at rest.

Assuming you are still on injections, you should be fine until your INR gets above 2. The injections don't affect your INR reading. The injections just keep you covered until your INR is therepeutic.

I was actually pretty active for a month or so after diagnosis, but I pushed it a little too hard and wound up exhausted and achy. I would take it easy, do a little bit at a time, only do as much as you can handle.

With my multiple bilateral PEs in January, I was also in the hospital only one night. I would have been OK to drive, but I insisted that my husband come get me instead just because I was feeling a little shell-shocked from it all.

Make sure you stay hydrated! And do try to check in with your doctor so you know someone is watching your case.

Hang in there ... and welcome to our club. I'm glad you are here to join us!

Do you have a doctor at all that you see for your regular health stuff?

Yes, and after talking to people on this forum I have booked an appointment with him for Wednesday evening.

FABULOUS! That's the right move.

Glad to hear about the appointment! I would start a list now of things you have questions about. There is nothing more frustrating than being in the doctor's office and forgetting to ask the question you were most curious about.

Glad to hear that you have got an appointment with your GP - hopefully this will improve the quality of information you recieve. I am a UK resident and had bilateral PE's in June this year and am on warfarin for life - find it very strange that you were discharged with an INR of 1.5/drive home after being so unwell. To date I haven't been able to find a care pathway for rehab of pulmonary embolism in the UK and as has been said you need to ask - have you been referred to a respiratory specialist for follow up?. As a footnote I was given a helpline number to a warfarin pharmacy service if I have any concerns or queries - they have been excellent over the last six months. This site has been brilliant and has been a real source of strength to me personally and has given me prompts on what questions/services I should be asking for

all the best sean

Thanks Sean. That's really helpful. I will certainly ask about the respiratory specialist. Do you know what the Warfarin helpline number is as I wasn't given that either and it sounds really useful.
Just waiting to hear what my INR will be today. The sickness is a little better today but still have bad headaches and lack of appetite. I think the truth is originally they were going to keep me in until today but they just simply didn't have the beds for more urgent cases...so they sent me home. I did obviously really want to go home though and I think I will probably go back to work at least part time this week.
Is your life back on track?

Hi good to hear from you before I was discharged I was visited by the phramacist in hospital who talked me through life on warfarin etc. and i was given an information pack & warfarin record booklet which is produced by the NHS National patient safety group (which has been abolished july 2010 /British society for haematology. Included in this was a helpline number for the pharamacy dept within the hospital I was cared for - I would suggest that with the support of your GP find out if this service exists in your area. I personally have found this service to be very helpful in helping me with a few queries with medications etc. - I am doing better just back to work after a few complications on the way (not with the warfarin this has been pretty straightforward with my INR range 2.5-3.5). Take it easy on yourself its scary and tiring but it does get better

All the best
Sean

Thank you Sean, that's great. I will ask. Although I feel quite tired (for me anyway) and headachey I do want to go back to work. I presume other people went back to work on INR 1.5? No one has told me that either...but I am really hoping my GP will clear some of these things up.
Thanks for your encouragement
Debbie

Just had my INR result - it is now 1.7 so has gone up a couple of points in a day which is positive.
Debbie

Glad to hear tINR is on the rise - it took me 6 days to get within the therapeutic range - I have found popping into this site regularly really helpful to help understand what has happened, context, hope and support - all the very best sean