Treatment After Pulmonary Embolism

Anyone have any experience with treatments after a pulmonary embolism?
Wednesday, came to the hospital ER because I had trouble breathing. I thought I was getting bronchitis again. I was more than shocked and surprised to learn that I have major clotting and was admitted immediately to ICU and put on heparin. Doctor said I was lucky I came in when I did or this could have been fatal.

I am still in shock. My ITP was diagnosed in 2006. Initially was on prednisone and then had one Rituxan treatment which has been successful thus far. Had a low <50 count in 2010. New insurance company denied Rituxan treatment and by the time the appeal went through, platelets were back to >70, and since then have been between 80 and 100. I have not had any treatments since Rituxan in 2006, so my ITP experience has been mild. My experience has mostly been just monitoring.

Upon admit was at 93. After 24 hours of heparin levels have been 73, 83 and waiting on today's results. Today the plan is to start on coumadin. I've been searching the posts reading up on the comments on heparin and coumadin.

I am very thankful to have made it to the ER and gotten treatment as quickly as I did. I haven't had any serious ITP issues since diagnosis and up until this hospital admit, I was completely unaware that I could have clotting problems. I did see several posts on the clotting and ITP.

Just wondering if others have had experience with the coumadin. My understanding is I could be on coumadin now for the rest of my life?? Right now, I'm not sure what to ask doctors and my chief complaint right now is that I'm very tired of being a human pin cushion. Not sure yet when I'll get to go home or what is going to change after I do go home. I am lucky to have physicans that are using the team approach to treatment and so far are all communicating well -- primary physican, hemo and pulmonary doc are all working good together.


Thanks.

Deb S.

Have you been tested for APS.. antiphospholipid syndrome? That causes clotting and ITP.

www.ncbi.nlm.nih.gov/pubmed/9135225

Just read about this and will have to ask doctor. Thanks for the info.

Deb S.

Kinsey - good thing you went to the ER when you did.

A few of us here have APS. I have had the antibodies, but have not had any clotting up to this point. I take a daily aspirin as a precaution, but there is no research that suggests that it makes a difference.

Keep us posted, okay?

Was released from the hospital today. Sent home with coumadin (once a day) and Enoxaparin Sodium injections twice a day. Will be getting blood checks regularly and off work for at least 14 days. Feeling 70% better. Protine and platelets were monitored daily and will continue to be regularly monitored.

I plan to call my hemotologist tomorrow to share the new info with her and then just let the doctors work on the best care plan. So far, I'm very luck in having the PCP, Hemo, and Pulmonary doctor that all seem to work well together!!! YEAH!!!! Hope they maintain a good working relationship.

Best part of being home is no more IV and no more blood draws every 6 hours or so. No problems giving myself the shots, but it does burn slightly after injection.

So thankful for the prayers of family and friends and knowing God has been watching over me closely this past week.

Thanks for the posts!

Deb S.

I'm glad you are home. Let me know how everything goes.