I am really surprised that few, if any, people suffering from frequent clots, shortness of breath and chest pain have specialists that have not ordered two important tests. First is a platelet count and, if it's high, then ordering a test for the JAK2 genetic mutation (ET). This is usually followed by a Hemotologist. Second are the tests for pulmonary hypertension (PH) and pulmonary arterial hypertension (PAH). These are rare diseases that only a doctor who specializes in them really understands. They are very serious so specialist care is essential for good results. I'm speaking from experience. I have both ET and PAH. I'm on a number of medications and am doing very well, leading a relatively active life.
I am seeing radiologist for another issue today, he said your heart is on the left side. I also have pain on right side in same area & my GI doc thinks it’s from IBS, idk. I’ve had this pain ever since I had a colonoscopy a few years ago. Have you talked to your doctor about it? If not, you may want to mention. Seems as we get a little older, more things come up. Prayers & hope the pain gets better!
I am seeing radiologist for another issue today, he said your heart is on the left side. I also have pain on right side in same area & my GI doc thinks it’s from IBS, idk. I’ve had this pain ever since I had a colonoscopy a few years ago. Have you talked to your doctor about it? If not, you may want to mention. Seems as we get a little older, more things come up. Prayers & hope the pain gets better!
Now, I'm wondering if the sharp pain that comes and goes on my rib just under my right breast is my heart? Reading this makes me nervous. Just had another pain spasm!
God Bless you, @dp77827. I needed to hear that. I am with you that validation from your practitioners as well as from those experiencing the heartache from struggling with an illness, is key to healthy healing. I also admit that I am struggling right now. It’s proving to be very difficult to maintain a positive outlook when it seems like my health has taken a turn in which I do not like and am comfortable with. I come here and this place holds true feelings and expressions on real issues that we face dealing with illness and the hardships it poses with family, friends and all relationships. There is an acceptance here. Acceptance and understanding that are shared without judgement or malice. I am extremely grateful that I found a place where expression is accepted.
God Bless you, @dp77827. I needed to hear that. I am with you that validation from your practitioners as well as from those experiencing the heartache from struggling with an illness, is key to healthy healing. I also admit that I am struggling right now. It’s proving to be very difficult to maintain a positive outlook when it seems like my health has taken a turn in which I do not like and am comfortable with. I come here and this place holds true feelings and expressions on real issues that we face dealing with illness and the hardships it poses with family, friends and all relationships. There is an acceptance here. Acceptance and understanding that are shared without judgement or malice. I am extremely grateful that I found a place where expression is accepted.
I am very grateful for this site. There are some beautiful people in here. Mentally, this site helps me to know that there are others fighting this fight. Awareness in always key!🙂
I am also very sorry for your troubles. Your story as well as @beancat425 were my first to see. I just entered this site yesterday. I am challenged to make the most of this illness when I am able to read others stories. Thank all who use this site. Thank you for your honesty and willingness to share your experiences as well as thoughts. My prayers are to all.
My first pulmonary Embolism was a saddle clot (@30yrs ago) I was transferred to a cardiac hospital, 4 hrs away, after I was told I had a heart attack. No X-rays were taken. Just labs. When they began taking x-rays they had to stabilize me on the exam table. I was told that I had a clot, and the clot was huge. My skin, I was told had turned an olive color and I, of course, didn’t have a clue I was sick. No symptoms I was aware of. I had an IVC filter placed, that very same day. After that big one, I have been continuously developing them ever since then.
Medications changed, starting with the most common, Warfarin. I went through the alphabet ending with Xarelto. Still developing clots. Mostly PE’s, then about 6 yrs later, I started developing DVT’s. My IVC had to be replaced which was done at Northwestern University Hospital in Chicago 🙏🏽 a few years ago. Blessings to them, they were my Godsend.
To answer your question, I do not have a pulmonologist. I was told a few yrs back that I did not need one. I will inquire about one again today. Also, a consult was put in for me to see a cardiologist. I have not scheduled that appointment as of yet. Today hopefully. Thank you for reminding me!
I wasn’t as hopeful this morning till I read your message a few minutes ago. I came home a few hrs ago from the ER after spending a good 13 hrs there. Findings that I was not having heart attack or stroke. Well….
I am taking a turn for the better realizing the tips you gave me. I do still have things I still can do for myself.
I am reaching out to my PC and asking for a Pulmonologist and I am calling today to schedule an appointment with the Cardiology Dept. at my hospital.
Thanks again!
To all of you who read my post, please try and stay positive. Be kind to yourself. Know that I know, that this disease is not an easy one to master. Read the posts to gather insight, learn and help others. Know that you are not alone. This fight is all of our fights, as well as our families and practitioners.
Stay True.
My prayers continue for you, your family & care team. While my medication helps with the chest pain, I continue to experience it. My cardiologist says that when you survive a massive pulmonary embolism, it’s not uncommon to have this which made me feel better. Sometimes you feel like people think it’s in your head, it’s not. While I’m so grateful to be alive, I am very grateful my cardiologist acknowledged this. I was thinking it’s 4 years, things ought to be back to normal, yours was 30 years. Hang in there & be sure to advocate for the care you need !! Prayers &best wishes!!
Sorry you’re feeling so bad. Were you referred to a pulmonologist? I had a massive saddle pulmonary embolism in July 2019 & spent a week in the hospital. The saddle pe also put me in congestive heart failure. My care team told my family they didn’t normally see anyone survive what I did as they were normally in the morgue. When I was discharged, I was sent home with prescription for xarelto & a referral to see my pcp, my pulmonologist & a cardiologist. I’ve had chest pains & shortness of breath since. My pulmonologist ordered a pulmonary function test but after 2020, that was delayed due to Covid. However, my pulmonologist had prescribed an inhaler. After I was able to have the PFT, I was diagnosed with moderate persistent asthma. I still have a piece of the blood clot in my left lung that never dissolved but has remained stable. My cardiologist has put me on meds to reduce the chest pain but I still have some chest pain. My cardiologist recently did an angiogram ct which was ok. I see my pcp 2x a year & right now due to asthma issues, I’ve been seeing my pulmonologist every 3 months but normally see him every 6 months - just depending on how I’m doing. I hope this helps you and hope you can find a good pulmonologist & cardiologist that can figure out how best to treat you. Prayers for you & your family.
I am very grateful for this site. There are some beautiful people in here. Mentally, this site helps me to know that there are others fighting this fight. Awareness in always key!🙂
I am also very sorry for your troubles. Your story as well as @beancat425 were my first to see. I just entered this site yesterday. I am challenged to make the most of this illness when I am able to read others stories. Thank all who use this site. Thank you for your honesty and willingness to share your experiences as well as thoughts. My prayers are to all.
My first pulmonary Embolism was a saddle clot (@30yrs ago) I was transferred to a cardiac hospital, 4 hrs away, after I was told I had a heart attack. No X-rays were taken. Just labs. When they began taking x-rays they had to stabilize me on the exam table. I was told that I had a clot, and the clot was huge. My skin, I was told had turned an olive color and I, of course, didn’t have a clue I was sick. No symptoms I was aware of. I had an IVC filter placed, that very same day. After that big one, I have been continuously developing them ever since then.
Medications changed, starting with the most common, Warfarin. I went through the alphabet ending with Xarelto. Still developing clots. Mostly PE’s, then about 6 yrs later, I started developing DVT’s. My IVC had to be replaced which was done at Northwestern University Hospital in Chicago 🙏🏽 a few years ago. Blessings to them, they were my Godsend.
To answer your question, I do not have a pulmonologist. I was told a few yrs back that I did not need one. I will inquire about one again today. Also, a consult was put in for me to see a cardiologist. I have not scheduled that appointment as of yet. Today hopefully. Thank you for reminding me!
I wasn’t as hopeful this morning till I read your message a few minutes ago. I came home a few hrs ago from the ER after spending a good 13 hrs there. Findings that I was not having heart attack or stroke. Well….
I am taking a turn for the better realizing the tips you gave me. I do still have things I still can do for myself.
I am reaching out to my PC and asking for a Pulmonologist and I am calling today to schedule an appointment with the Cardiology Dept. at my hospital.
Thanks again!
To all of you who read my post, please try and stay positive. Be kind to yourself. Know that I know, that this disease is not an easy one to master. Read the posts to gather insight, learn and help others. Know that you are not alone. This fight is all of our fights, as well as our families and practitioners.
Stay True.
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.
Sorry you’re feeling so bad. Were you referred to a pulmonologist? I had a massive saddle pulmonary embolism in July 2019 & spent a week in the hospital. The saddle pe also put me in congestive heart failure. My care team told my family they didn’t normally see anyone survive what I did as they were normally in the morgue. When I was discharged, I was sent home with prescription for xarelto & a referral to see my pcp, my pulmonologist & a cardiologist. I’ve had chest pains & shortness of breath since. My pulmonologist ordered a pulmonary function test but after 2020, that was delayed due to Covid. However, my pulmonologist had prescribed an inhaler. After I was able to have the PFT, I was diagnosed with moderate persistent asthma. I still have a piece of the blood clot in my left lung that never dissolved but has remained stable. My cardiologist has put me on meds to reduce the chest pain but I still have some chest pain. My cardiologist recently did an angiogram ct which was ok. I see my pcp 2x a year & right now due to asthma issues, I’ve been seeing my pulmonologist every 3 months but normally see him every 6 months - just depending on how I’m doing. I hope this helps you and hope you can find a good pulmonologist & cardiologist that can figure out how best to treat you. Prayers for you & your family.
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I am really surprised that few, if any, people suffering from frequent clots, shortness of breath and chest pain have specialists that have not ordered two important tests. First is a platelet count and, if it's high, then ordering a test for the JAK2 genetic mutation (ET). This is usually followed by a Hemotologist. Second are the tests for pulmonary hypertension (PH) and pulmonary arterial hypertension (PAH). These are rare diseases that only a doctor who specializes in them really understands. They are very serious so specialist care is essential for good results. I'm speaking from experience. I have both ET and PAH. I'm on a number of medications and am doing very well, leading a relatively active life.
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3 ReactionsYes, as I have gotten older it seems that everything breaks.
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1 ReactionI am seeing radiologist for another issue today, he said your heart is on the left side. I also have pain on right side in same area & my GI doc thinks it’s from IBS, idk. I’ve had this pain ever since I had a colonoscopy a few years ago. Have you talked to your doctor about it? If not, you may want to mention. Seems as we get a little older, more things come up. Prayers & hope the pain gets better!
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Hug
2 ReactionsNow, I'm wondering if the sharp pain that comes and goes on my rib just under my right breast is my heart? Reading this makes me nervous. Just had another pain spasm!
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Hug
1 ReactionYes, there is acceptance here & so many have gone through what we have. It is so helpful to read other people’s journeys! God bless you!!
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3 ReactionsGod Bless you, @dp77827. I needed to hear that. I am with you that validation from your practitioners as well as from those experiencing the heartache from struggling with an illness, is key to healthy healing. I also admit that I am struggling right now. It’s proving to be very difficult to maintain a positive outlook when it seems like my health has taken a turn in which I do not like and am comfortable with. I come here and this place holds true feelings and expressions on real issues that we face dealing with illness and the hardships it poses with family, friends and all relationships. There is an acceptance here. Acceptance and understanding that are shared without judgement or malice. I am extremely grateful that I found a place where expression is accepted.
-
Like -
Helpful -
Hug
1 ReactionMy prayers continue for you, your family & care team. While my medication helps with the chest pain, I continue to experience it. My cardiologist says that when you survive a massive pulmonary embolism, it’s not uncommon to have this which made me feel better. Sometimes you feel like people think it’s in your head, it’s not. While I’m so grateful to be alive, I am very grateful my cardiologist acknowledged this. I was thinking it’s 4 years, things ought to be back to normal, yours was 30 years. Hang in there & be sure to advocate for the care you need !! Prayers &best wishes!!
I am very grateful for this site. There are some beautiful people in here. Mentally, this site helps me to know that there are others fighting this fight. Awareness in always key!🙂
I am also very sorry for your troubles. Your story as well as @beancat425 were my first to see. I just entered this site yesterday. I am challenged to make the most of this illness when I am able to read others stories. Thank all who use this site. Thank you for your honesty and willingness to share your experiences as well as thoughts. My prayers are to all.
My first pulmonary Embolism was a saddle clot (@30yrs ago) I was transferred to a cardiac hospital, 4 hrs away, after I was told I had a heart attack. No X-rays were taken. Just labs. When they began taking x-rays they had to stabilize me on the exam table. I was told that I had a clot, and the clot was huge. My skin, I was told had turned an olive color and I, of course, didn’t have a clue I was sick. No symptoms I was aware of. I had an IVC filter placed, that very same day. After that big one, I have been continuously developing them ever since then.
Medications changed, starting with the most common, Warfarin. I went through the alphabet ending with Xarelto. Still developing clots. Mostly PE’s, then about 6 yrs later, I started developing DVT’s. My IVC had to be replaced which was done at Northwestern University Hospital in Chicago 🙏🏽 a few years ago. Blessings to them, they were my Godsend.
To answer your question, I do not have a pulmonologist. I was told a few yrs back that I did not need one. I will inquire about one again today. Also, a consult was put in for me to see a cardiologist. I have not scheduled that appointment as of yet. Today hopefully. Thank you for reminding me!
I wasn’t as hopeful this morning till I read your message a few minutes ago. I came home a few hrs ago from the ER after spending a good 13 hrs there. Findings that I was not having heart attack or stroke. Well….
I am taking a turn for the better realizing the tips you gave me. I do still have things I still can do for myself.
I am reaching out to my PC and asking for a Pulmonologist and I am calling today to schedule an appointment with the Cardiology Dept. at my hospital.
Thanks again!
To all of you who read my post, please try and stay positive. Be kind to yourself. Know that I know, that this disease is not an easy one to master. Read the posts to gather insight, learn and help others. Know that you are not alone. This fight is all of our fights, as well as our families and practitioners.
Stay True.
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Helpful -
Hug
6 ReactionsSorry you’re feeling so bad. Were you referred to a pulmonologist? I had a massive saddle pulmonary embolism in July 2019 & spent a week in the hospital. The saddle pe also put me in congestive heart failure. My care team told my family they didn’t normally see anyone survive what I did as they were normally in the morgue. When I was discharged, I was sent home with prescription for xarelto & a referral to see my pcp, my pulmonologist & a cardiologist. I’ve had chest pains & shortness of breath since. My pulmonologist ordered a pulmonary function test but after 2020, that was delayed due to Covid. However, my pulmonologist had prescribed an inhaler. After I was able to have the PFT, I was diagnosed with moderate persistent asthma. I still have a piece of the blood clot in my left lung that never dissolved but has remained stable. My cardiologist has put me on meds to reduce the chest pain but I still have some chest pain. My cardiologist recently did an angiogram ct which was ok. I see my pcp 2x a year & right now due to asthma issues, I’ve been seeing my pulmonologist every 3 months but normally see him every 6 months - just depending on how I’m doing. I hope this helps you and hope you can find a good pulmonologist & cardiologist that can figure out how best to treat you. Prayers for you & your family.
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Helpful -
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5 Reactions