Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
Hi everyone! So glad I found this forum, it has been getting me through the last week. On December 14th I went to Urgent Care because I had been having trouble breathing for over a week. At first I thought it would go away, but then after some time I got scared.
At Urgent Care they insisted it was probably an anxiety attack and prescribed Xanax. I pushed for a battery of tests because my fear was it was either: COPD, Pulmonary Hypertension, blood clots or a thyroid issue. I NEVER go to the doctor without doing my research first to find out what I think it might be. Usually this makes me look like a condescending hypochondriac. Lucky for me, the doctor was willing to appease me (usually they just get annoyed, which I can understand). I told her that without these tests the "anxiety attack" could only get worse because I couldn't be sure.
The CT Scan came back showing a PE and multiple other little clots in my lungs. I was devastated (you all probably know this feeling too well). I'm 27, how is this possible? Will I be on blood therapy for life? Will I live through this? What caused it? I still do not have an answer to any of these questions.
So here I am, excited to be surrounded by other people who are experiencing the same thing. People I can share and gather information from.
Speaking of information.....I had a few questions. Obviously it is depressing in itself to be diagnosed with a PE, but on top of that I am scared of everything I put in or on me, which has led my to neglect my skin care these last 10 days and now on top of being depressed about the PE, I feel ugly and unattractive.
I want to start using my tretinoin cream and hydroquinone again, but none of the doctors I have seen (pulmonologist, primary care and coumadin clinic) seem to have a solid answer. They have no answers, just say something along the lines of "it should be okay". Uuuhhhhh, that is not comforting! Anyone with information about this I would greatly appreciate. Haven't found much from searching the internet.
I am grateful to be a part of this group and can't wait to get to know everyone!
At Urgent Care they insisted it was probably an anxiety attack and prescribed Xanax. I pushed for a battery of tests because my fear was it was either: COPD, Pulmonary Hypertension, blood clots or a thyroid issue. I NEVER go to the doctor without doing my research first to find out what I think it might be. Usually this makes me look like a condescending hypochondriac. Lucky for me, the doctor was willing to appease me (usually they just get annoyed, which I can understand). I told her that without these tests the "anxiety attack" could only get worse because I couldn't be sure.
The CT Scan came back showing a PE and multiple other little clots in my lungs. I was devastated (you all probably know this feeling too well). I'm 27, how is this possible? Will I be on blood therapy for life? Will I live through this? What caused it? I still do not have an answer to any of these questions.
So here I am, excited to be surrounded by other people who are experiencing the same thing. People I can share and gather information from.
Speaking of information.....I had a few questions. Obviously it is depressing in itself to be diagnosed with a PE, but on top of that I am scared of everything I put in or on me, which has led my to neglect my skin care these last 10 days and now on top of being depressed about the PE, I feel ugly and unattractive.
I want to start using my tretinoin cream and hydroquinone again, but none of the doctors I have seen (pulmonologist, primary care and coumadin clinic) seem to have a solid answer. They have no answers, just say something along the lines of "it should be okay". Uuuhhhhh, that is not comforting! Anyone with information about this I would greatly appreciate. Haven't found much from searching the internet.
I am grateful to be a part of this group and can't wait to get to know everyone!
This support group has been really helpful to me already so I hope you find what you're looking for here :)
~Kam~
Thanks for the reply. Definitely feels comforting to know there are others out there that this has happened to at young age. I feel okay some days and helpless others.
They tested for my Factor V and Factor II. I am normal for Factor V, but I am waiting on the Factor II results. I kind of have in idea of what I think could have caused it. I am a smoker since I was 15 and I also am immobile often enough. I have depression so when I am going through a low I usually won't leave my bed for the entire weekend.....I am sure this can't be good since people can get them just from long travel periods.
I am trying to stay positive by planning on quitting smoking on New Years and being more active, no matter how I am feeling. I feel guilty still smoking right now, knowing it can't be helpful. But I am trying to gear up my mind to prepare for quitting.
How are they dealing with the infarcation? Can that tissue recover? I would love to hear about how you are doing now. Are you still on the Lovenox shots? How long were you on them? What is your Coumadin dose (mine is 10mg right now and I am still at an INR of 1.3)? I worry that the higher my dose is the more damage the medication will do to my body in the long run (cause everyone says it is the same as rat poison). Sorry to throw all these questions at you at once. Just so interested in what the future may hold.
Thanks again for the reply!!!! :)
Welcome to our group. The coumadin/INRs will go up in down. Sometimes it takes the docs two months to get the medication at the right level without it going to high or to low. Regardless, the doc will get your INR between 2.0-3.0. As for those wonderful shots I had to be on 14 days of Lovenox until my coumadin/INR was in the right range. Glad to here you going to stop smoking. You might even start using nicotine patches and slowly reduce the amount of cigarettes you smoke. There alot of people from this group that will be able to give you support, hang in there.
Feel free to contact me about any questions.... I'm fairly new to all this as well but it is even nice to just know you're not alone. :)
~Kam~
What ur going through seems very similar to so many, myself included. Hope that helps.
survivor79 - What is endone? Never heard of that!
Also, can I add that I appreciate you guys more than I could ever express. Really. This forum has given me comfort and I am so grateful for all this information and outpour of love!
Speaking only as one person who has been through the wringer on this, I too had pain issues only after the PE as the lungs recovered. It was the only time in all my days that I took prescription meds for pain. Every episode the pain moved, starting from the mid-lower back and eventually winding its way up to the shoulders, getting progressively worse it seemed. Fortunately it ended after a week. For some it goes on longer or it returns intermittently. Others have no pain at all.
IMHO it was a good move to get some of the hematological testing done sooner rather than later. Such testing may or may not turn out to be effective while still on Warfarin, but in some cases it can uncover things that allow better judgment for how long to remain on Warfarin therapy.
While it is especially sad to see the younger people fall into the thrombophile club, there is a lot of company out there. Hockey's Tomas Fleischmann, Nascar's Brian Vickers, and Serena Williams of tennis fame are high-profile representative cases from the past two years, and all of them were diagnosed in their 20s.
First, with any meds, vitamins, OTC stuff ... I usually check with both my doctor and pharmacist about possible interactions. Then, I usually test every three days for a couple of weeks to see how my INR is reacting. You can adjust your INR to work with your life and the meds you usually take, but it can take some time to dial in the right dosages.
When I was diagnosed, I had almost no pain at all. Just severe SOB and a teensy cough. Four weeks later, I got hit with extreme exhaustion and pain in my back and shoulders and lungs. A repeat scan showed the clots were gone ... I had just been pushing it too hard and my lungs/body weren't healed enough yet. The moral is ... you can get pain and exhaustion and etc. on and off for a while. I still get twinges even now and I know to take it easy for a while.
I also struggled with depression and insomnia before my diagnosis. After diagnosis I added in extreme anxiety and it was really hard to function. I tried to work through it for a while, and then I finally saw a therapist who specialized in people who had survived life-threatening health issues. Very helpful. After a while I also added Lexapro to help me deal ... that was great too. Just be aware that the feelings are totally normal. It is up to you to decide how to deal with them.
Best wishes! Keep us posted!
I feel like this PE is causing more anxiety than depression. I couldn't sleep last night because all I did was worry that lying down was not helping me and every pain I felt I thought would be the end of me. From what I have read on this forum, this severe anxiety is normal....but sheesh, does it suck.
The last few days my husband has been far from supportive. He actually seems more distant. We talked about it the other night and he told me that he felt kind of like "just deal with it and get over it" because he has been here himself and is past the emotions I am dealing with. He was hit by a car when he was 18 and has been paralyzed in his left arm since, along with other issues like phantom pain. He said he knows he needs to be more understanding and is trying his hardest to remember what the beginning of these traumatic experiences feel like, but I don't see much effort. The first few days he was shocked and scared, so he was helpful and kind...but now, I just feel alone with this and don't even want to share anything with him. So, I really appreciate the support here on this forum, it means alot to me. You guys are an amazing group and I am ALMOST grateful for my PE, cause how else would I be here with this group?!
Any other tips and advice I am all ears to. I will probably post a million more questions (maybe even by end of day today alone!). Thank you again for all the support!