Again, I have been diagnosed with pulmonary embolisms. Beginning of the month of September, I flew home from NC with extreme heaviness in my body. I was unaware of my condition while I was in NC. It was said that at night I would get out of bed and lay and stretch out on the floor of our hotel room grunting, moving around on the floor while asleep . Asleep answering how unwell I felt. I continuously did this for 1 week. When I flew home, the heaviness I felt became extreme and I took myself to the hospital. I was diagnosed with 2 pulmonary embolisms in my upper right and left lung. Inpatient for 3 weeks on a blood thinner that I had been on since my 30’s. After being released, for not even 3 hrs, I brought myself back to the ER complaining about my hip. Sent home with muscle relaxers. 3 days later I presented myself to the ER, at another hospital, and was diagnosed with 2 more embolisms in the lower quadrant of my left and right lung and a DVT in my left leg. Still in the anticoagulant that I have been taking for @ 30 yrs.
Here now, today, I am sitting in an ER. My chief complaint is extreme chest pain. More acute with exertion. To include just walking, breathing, and moving my body. Sleeping has been out of the question. When I lay down I feel like I am suffocating. I am out of hospitals to run to because now I am being told that they do not know how to help me. To be honest, I don’t know how to help me. I know it takes years for our bodies to heal from blood clots. I understand that it’s not the anticoagulants that breaks down the clots, it’s our body. So, knowing this isn’t helping how I am feeling physically. I need to know what I can do for myself to have a quality of life that I can enjoy with a reasonable amount of discomfort and pain and minimal ER visits. I need to know how to mentally adjust with constant flare ups of clotting and its residual side effects.
Hello,
After few days' hospitalization and discharge in early Sept this year, I was told to return to the ER 8 days later after I'd called about a hematoma from a stab wound and slight shortness of breath. Honestly, I was more concerned about the hematoma--it was hard and not going down. I just attributed the shortness of breath to just laying around for a few days in the hospital not realizing that it could "cause" embolisms but nobody said anything during my stay. During that initial stay my HGB was 7.9, then 8.1 a few hours later. It was back down to 7.8 the 2nd admission. I was inpatient a couple more days, given blood thinners on discharge intravenously and then Pradaxa pills for 3 months. I was told for the next 3 months to be careful with sharp objects, bumps and bruises, and stop riding my bike (lol... bummer), take up swimming and walking. I am praying it's JUST for 3 months and not life long. The issue now is that those were ER doctors. Saw my primary care doc and was told to schedule with a hematologist. The problem is, getting specialists WITHIN the 3 months (now less) has been hell. I'm afraid that by the time I'm to come off Pradaxa I still won't have a doctor to advise me. How will I know I can stop? What will stopping it suddenly do to me? Won't I need another CT? Anyway, sorry it's so long but thanks for starting this post. How are you?
Hi beancat!
I understand your frustration. I am going through something similar myself. I just was released from the hospital a week ago for 4 embolisms and 1 DVT. My first appointment with my hematologist is in late December. Please hand in there, and know that you are not alone. Prayers to you. 🙏🏾
Again, I have been diagnosed with pulmonary embolisms. Beginning of the month of September, I flew home from NC with extreme heaviness in my body. I was unaware of my condition while I was in NC. It was said that at night I would get out of bed and lay and stretch out on the floor of our hotel room grunting, moving around on the floor while asleep . Asleep answering how unwell I felt. I continuously did this for 1 week. When I flew home, the heaviness I felt became extreme and I took myself to the hospital. I was diagnosed with 2 pulmonary embolisms in my upper right and left lung. Inpatient for 3 weeks on a blood thinner that I had been on since my 30’s. After being released, for not even 3 hrs, I brought myself back to the ER complaining about my hip. Sent home with muscle relaxers. 3 days later I presented myself to the ER, at another hospital, and was diagnosed with 2 more embolisms in the lower quadrant of my left and right lung and a DVT in my left leg. Still in the anticoagulant that I have been taking for @ 30 yrs.
Here now, today, I am sitting in an ER. My chief complaint is extreme chest pain. More acute with exertion. To include just walking, breathing, and moving my body. Sleeping has been out of the question. When I lay down I feel like I am suffocating. I am out of hospitals to run to because now I am being told that they do not know how to help me. To be honest, I don’t know how to help me. I know it takes years for our bodies to heal from blood clots. I understand that it’s not the anticoagulants that breaks down the clots, it’s our body. So, knowing this isn’t helping how I am feeling physically. I need to know what I can do for myself to have a quality of life that I can enjoy with a reasonable amount of discomfort and pain and minimal ER visits. I need to know how to mentally adjust with constant flare ups of clotting and its residual side effects.
Hello,
After few days' hospitalization and discharge in early Sept this year, I was told to return to the ER 8 days later after I'd called about a hematoma from a stab wound and slight shortness of breath. Honestly, I was more concerned about the hematoma--it was hard and not going down. I just attributed the shortness of breath to just laying around for a few days in the hospital not realizing that it could "cause" embolisms but nobody said anything during my stay. During that initial stay my HGB was 7.9, then 8.1 a few hours later. It was back down to 7.8 the 2nd admission. I was inpatient a couple more days, given blood thinners on discharge intravenously and then Pradaxa pills for 3 months. I was told for the next 3 months to be careful with sharp objects, bumps and bruises, and stop riding my bike (lol... bummer), take up swimming and walking. I am praying it's JUST for 3 months and not life long. The issue now is that those were ER doctors. Saw my primary care doc and was told to schedule with a hematologist. The problem is, getting specialists WITHIN the 3 months (now less) has been hell. I'm afraid that by the time I'm to come off Pradaxa I still won't have a doctor to advise me. How will I know I can stop? What will stopping it suddenly do to me? Won't I need another CT? Anyway, sorry it's so long but thanks for starting this post. How are you?
I have clots in both of my lungs secondary to ovarian cancer. I just got the PE diagnosis yesterday. I'm on blood thinners now, so my list of worries has gotten longer. I'm afraid to just sit down for too long.
Just got out of hospital. I had a gastric bleed, lost a lot of blood then fell and broke my collarbone. They found a PE at the hospital. I am short of breath and wobbly. Will I be short of breath the rest of my life??
@flipflopluvr
I'm sorry you had to go through all of that, but it is not likely that the shortness of breath will last for the rest of your life unless you have some type of underlying condition like COPD. Fortunately, with medication, inhalers, rest and physical therapy if needed...we all get better. It just takes time.
Be patient with yourself. Sending a big hug to you today.
The last two were provoked with a surgery and another procedure. This last one, I have no clue. Double dosing of Eliquis currently and will always be on the med now.
Did you know you had a clot in your leg? Im familiar with having DVTs but the last two PEs, they didn't know where the clots came from.
Are you using any blood thinners?
@kjcarlson
I had no DVT symptoms on my leg and since all my injuries were on the left side of my body, I became immediately suspicious when I woke up having Shortness of breath with inspiration and a sharp pain on the right lower posterior lobe of my right lung. I had not been placed on any anticoagulants following the accident. That day, I had an appointment already scheduled with my Ortho and held off going to the ER and saw him. He didn't believe me or my reported symptoms, even though I could point to the exact spot where I could feel the pain. He thought it was just some undetected kidney injury and performed an xray. By that time, the pain was pretty bad and I insisted that he order a CT scan at the local hospital just across the street. After the scan, the Ortho called me himself and there was a long pause as he finally said "you were absolutely correct in the location of the clot and I'm admitting you right now". Following my discharge, I obtained a better and more competent Orthopedist.
I had sudden onset in July 2020 - fainted so went to ER and the clots were in lungs and the saddle area between. I’m lucky to be alive. ICU w heparin 3 days, another 4 in hospital- on elloquis for life. They told me the clots had to have been in my groin or hips or legs then traveled to lungs. I never felt any symptoms of clots before they hit my lungs. I do have 2 blood mutations - factor 5 Leiden and Prothrombin.
Something similar happened to me a couple of weeks ago: collapsed at home, nearly fainting, unable to breathe. Admitted through the ER & found to have a submassive PE in both lungs and the saddle between them. The right ventricle of the heart was twice the size of the left and the tricuspid valves weren’t functioning. Entire femoral/popliteal vein had clot except where it had broken off to the lungs. Had a thrombectomy the next day because heart strain and breathing problems were still severe. Procedure went well but had unexpected complications afterwards including bleeding, blood pressure issues, and developed consolidated pneumonia in the left lower lung. Glad to be alive and home though, since it wasn’t a sure thing when we were on the way to the ER that day. ( I will try to upload a picture of the results of the procedure- clots removed and from where). It was scary but staff were so helpful and calm that I actually wasn’t worried until it was almost time for discharge!
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OMG... I'm so so sorry. I'm praying for your miracle.
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1 ReactionHi beancat!
I understand your frustration. I am going through something similar myself. I just was released from the hospital a week ago for 4 embolisms and 1 DVT. My first appointment with my hematologist is in late December. Please hand in there, and know that you are not alone. Prayers to you. 🙏🏾
Again, I have been diagnosed with pulmonary embolisms. Beginning of the month of September, I flew home from NC with extreme heaviness in my body. I was unaware of my condition while I was in NC. It was said that at night I would get out of bed and lay and stretch out on the floor of our hotel room grunting, moving around on the floor while asleep . Asleep answering how unwell I felt. I continuously did this for 1 week. When I flew home, the heaviness I felt became extreme and I took myself to the hospital. I was diagnosed with 2 pulmonary embolisms in my upper right and left lung. Inpatient for 3 weeks on a blood thinner that I had been on since my 30’s. After being released, for not even 3 hrs, I brought myself back to the ER complaining about my hip. Sent home with muscle relaxers. 3 days later I presented myself to the ER, at another hospital, and was diagnosed with 2 more embolisms in the lower quadrant of my left and right lung and a DVT in my left leg. Still in the anticoagulant that I have been taking for @ 30 yrs.
Here now, today, I am sitting in an ER. My chief complaint is extreme chest pain. More acute with exertion. To include just walking, breathing, and moving my body. Sleeping has been out of the question. When I lay down I feel like I am suffocating. I am out of hospitals to run to because now I am being told that they do not know how to help me. To be honest, I don’t know how to help me. I know it takes years for our bodies to heal from blood clots. I understand that it’s not the anticoagulants that breaks down the clots, it’s our body. So, knowing this isn’t helping how I am feeling physically. I need to know what I can do for myself to have a quality of life that I can enjoy with a reasonable amount of discomfort and pain and minimal ER visits. I need to know how to mentally adjust with constant flare ups of clotting and its residual side effects.
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1 ReactionThe Hematologist office has been contacted. Supposedly they'll give me a call. Fingers crossed.
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1 ReactionHave your primary care doctor call a hemotologist and make the appointment for you. Generally you get faster results that way.
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1 ReactionHello,
After few days' hospitalization and discharge in early Sept this year, I was told to return to the ER 8 days later after I'd called about a hematoma from a stab wound and slight shortness of breath. Honestly, I was more concerned about the hematoma--it was hard and not going down. I just attributed the shortness of breath to just laying around for a few days in the hospital not realizing that it could "cause" embolisms but nobody said anything during my stay. During that initial stay my HGB was 7.9, then 8.1 a few hours later. It was back down to 7.8 the 2nd admission. I was inpatient a couple more days, given blood thinners on discharge intravenously and then Pradaxa pills for 3 months. I was told for the next 3 months to be careful with sharp objects, bumps and bruises, and stop riding my bike (lol... bummer), take up swimming and walking. I am praying it's JUST for 3 months and not life long. The issue now is that those were ER doctors. Saw my primary care doc and was told to schedule with a hematologist. The problem is, getting specialists WITHIN the 3 months (now less) has been hell. I'm afraid that by the time I'm to come off Pradaxa I still won't have a doctor to advise me. How will I know I can stop? What will stopping it suddenly do to me? Won't I need another CT? Anyway, sorry it's so long but thanks for starting this post. How are you?
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1 ReactionI have clots in both of my lungs secondary to ovarian cancer. I just got the PE diagnosis yesterday. I'm on blood thinners now, so my list of worries has gotten longer. I'm afraid to just sit down for too long.
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2 Reactions@flipflopluvr
I'm sorry you had to go through all of that, but it is not likely that the shortness of breath will last for the rest of your life unless you have some type of underlying condition like COPD. Fortunately, with medication, inhalers, rest and physical therapy if needed...we all get better. It just takes time.
Be patient with yourself. Sending a big hug to you today.
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Helpful -
Hug
3 Reactions@kjcarlson
I had no DVT symptoms on my leg and since all my injuries were on the left side of my body, I became immediately suspicious when I woke up having Shortness of breath with inspiration and a sharp pain on the right lower posterior lobe of my right lung. I had not been placed on any anticoagulants following the accident. That day, I had an appointment already scheduled with my Ortho and held off going to the ER and saw him. He didn't believe me or my reported symptoms, even though I could point to the exact spot where I could feel the pain. He thought it was just some undetected kidney injury and performed an xray. By that time, the pain was pretty bad and I insisted that he order a CT scan at the local hospital just across the street. After the scan, the Ortho called me himself and there was a long pause as he finally said "you were absolutely correct in the location of the clot and I'm admitting you right now". Following my discharge, I obtained a better and more competent Orthopedist.
-
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Helpful -
Hug
1 ReactionSomething similar happened to me a couple of weeks ago: collapsed at home, nearly fainting, unable to breathe. Admitted through the ER & found to have a submassive PE in both lungs and the saddle between them. The right ventricle of the heart was twice the size of the left and the tricuspid valves weren’t functioning. Entire femoral/popliteal vein had clot except where it had broken off to the lungs. Had a thrombectomy the next day because heart strain and breathing problems were still severe. Procedure went well but had unexpected complications afterwards including bleeding, blood pressure issues, and developed consolidated pneumonia in the left lower lung. Glad to be alive and home though, since it wasn’t a sure thing when we were on the way to the ER that day. ( I will try to upload a picture of the results of the procedure- clots removed and from where). It was scary but staff were so helpful and calm that I actually wasn’t worried until it was almost time for discharge!
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