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.

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Greeneyes48 09/23/2017

On 09/13/2017 I went to the hosptial with pain in my back and side. I thought it was kindey stones or something else. First I was told I had a pneumonia but with no symptoms of pneumonia the amazing ER doctor said he would like to do a CT scan. After my CT scan he found out that it was not a pneumonia but a PE blood clot in my right lung. I was left in the hosptial for 7 days. The pain was horriable and I was short of breath. The told me about medicines for PE but after considering 3 different meds I went with Coumadin. I know its alot of testing for the right levels but for me I would like to be monitored as this is all new to me. The new medicines are too new and have alot of risk I wasn't willing to take. I have only been home for a few day since I was diagnosed but this has changed my life. I am going through so many emotions but what I want is to feel normal again. Can anyone tell me if normal will ever come back, how long before I start feeling normal? I hope as time goes by I can come back and let everyone know that its getting better but for now I am taking it one day at a time.

Update 10/12/2017: Frist Tuesday I went to see my primary doctor where he told me that I was running a fever so he put me on antibiotics. The antibiotics affect my levels with the coumadin so I have to be checked more often so my levels won't go crazy. I didn't even notice I was running a fever. I was having a little more pain and just tired but I guess that was from the fever. I thank God I went to be checked and my doctor is amazing. He said we don't want to take the chance of me getting a pneumonia. I am so happy he listens and helps.

Today, I went to my Hematologist he told me that I have Antiphospholipid Syndrome. This autoimmune diseease can cause me to have more blood clots. I was told by my doctor that I will have to be on blood thinning meds for the rest of my life. I am happy in a way that I was told something (not happy to be on blood thinners for the rest of my life) but still was not told how or why I got this syndrome. I am reading up on this condition and trying to keep positive so I can get better a little if not alot back to normal. Pray for me.

Thankful2balive 09/23/2017

I'm most definitely relating to you on this.I felt that same horrible pain in my left side and upper back which ended up with me on the ER having clots in both my lungs along with water and inflammation in the left lung. I'm home after 5 days in the hospital and also just want to get back to normal. I'm taking xerelto for my blood thinner at the recommendation of my hematologist. I'm still having pain and coughing and fatigue but I do feel better than I have in weeks. We still don't know the cause of my PE but I ended up with pneumonia as well. Stay positive and strong! We are so lucky to be here today.

Greeneyes48 09/24/2017

@thanful2balive Thanks, yes we are very lucky to be alive it could have been alot worse. I know what you are saying with the pain, coughing and fatigue as I have the same. It is getting better everyday but I am taking it one day at a time. Its just been hard to try to be normal around family when you are in pain and short of breath. I hate that they are going through this but I thank God I have such a supportive family that has been by my side the whole time. I know we will get back to some what normal as this does take time. I will stay strong, you do the same. Again thanks it helps to know there are others out there in the same situation. God bless.

JillA 09/25/2017

OMG, your experiences are just like mine! I was diagnosed just last week, after having horrible pain on my lower left side. The clot is in my right lung. My CT scan showed I also had an adrenal gland bleed on the left. I'm now injecting Lovenox 2x a day and taking Coumadin orally. I was in the hospital for 4 days in Montana, on the way home from our Yellowstone vacation. I was told the altitude was probably a factor in my case. I came to this board because I am experiencing a decreased appetite. I am actually quite happy about that, lol. I'm wondering if that's a side effect of the drugs, and apparently it is. Anyway, like the others who have posted, I am supremely grateful to be alive. One ER doc told me that clots like this cause people to "die in their soup." Whew!!!!

Xisco 09/25/2017

First, I'd like to wish you a full recovery. Everyone heals at a different rate. It's important to try and stay positive and to communicate with your doctor. Many people can fully recover from a Pulmonary Embolism. When someone can't it's often times because of the underlying issue that caused the Pulmonary Embolism, at least from what I've been reading. Besides a doctor, it might be good to have someone to talk to about the emotional effect of having a PE. I hope everything works out well for you.

Greeneyes48 09/29/2017

@JillA Yes I am experiencing a decrease in appetite as well and like you that is a good thing for me LOL as I needed to lose some weight. My ER doctor was just as blunt as yours but he saved my life as they first thought it was a pneumonia but he didn't give up and had them do a CT scan that's how he found it. As for what @Xisco said there are underlying issue that cause PE so my doctor is doing a lot of different testing 10 to be exact to see if there is an underlying issues that cause me to have my PE. He is testing for cancers, lupus and other factors to rule things out. This is all new to me and in the beginning I was shocked and really didn't want to deal with it but now I want to know why, what and how can I prevent it from happening again. I still get pain in my side but I am happy to report that the shortness of breath has gotten so much better and I can go a day with out having shortness of breath. I mostly now get pain at night on my right lung. I am trying to walk more. I was not able to walk at work as I was a desk for 8 to 10 hours but I am changing my life style and making sure to get up and walk. I never thought this would happen to me but here I am and I hope by putting this on here it is helping someone else. I didn't know how many people suffer from PE blood clots we need more research and answers.

@JillA stay strong and God bless. I know that it is not easy but we can do this.

@Xisco Thank you. I am praying for a full recovery as this is not easy. Yes it was good for me to get on here and speak about this. I would tell any one with any medical issue to get support from family and friends as having that support helps so much as you go through so many emotions.

God bless and a speedy recovery to anyone reading this.

Shahid 12/10/2017

Dear Greeneyes,

I do hope you feel much better by now. I know what you have been experiencing and its definitely all awful as have been through there myself and still passing through.
I had a DVT and PE 8 months back as a complication of my knee surgery (partial menischotomy) and my doctor was very reckless in not forcing me to walk immediately after operation and also not guiding and educating me well. I still am taking Xarelto as blood thinner and may be for a couple of more months becoz of residual clots in my knee.
I have not done all the blood tests but did 6-7 types of screening and have been also diagnosed to be APS positive as in your case as my anti lupus anti coagulant was positive 2 times at more than 3 months interval. However my haematologist is saying he will decide after one year completion whether i should take Xarelto lifetime or stop. Since my case was provoked because of surgery.
WAs your PE or clotting provoked or unprovoked (just happend out of blue), as far as i can see it was unprovoked so that does mean u mite need blood thinner for long. i hope you feel very better by now both physically and mentally as this clotting thing is such a nightmare. But i think taking blood thinner even for longer term is worthwhile considering the risk of clotting and the damage it does to our bodies.
Wish you best and speedy recovery and do remember in prayers. As definitiely we come to know real value of health once we don't have the best of it.
Best regards..

drgps 01/31/2018

Greeneyes, did they find out what caused your blood clot?

I'm dealing with the same testing now...looks like I may have a clotting disorder. Had my PE in right lung on 1/18/18 & dealing with pain as these clots clear.

Hope all is well with you,

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