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!!
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.
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!
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!
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.
Sorry to hear you have had multiple PEs; I had one back in 2008; I had pain in my left leg and knew something was wrong, went to urgent care and they had an ultrasound performed and found clots, so they gave me a injection of blood thinners and sent me home, told me to come back next day for another injection. I arrived and when they checked my oxygen with the finger test it was low at 60% so I was rushed to the hospital for many tests and was in ER for 7 days. I had no symptoms which was scary, no breathing issues, I felt fine. I am lucky to be alive and to have survived the night I went home after being told I had clots in my leg. Here to support you, I pray every day I never have clots again, but they did diagnose me with a change in my blood chemistry, my Factor VIII changed, and my blood now over coagulates so I am on blood thinner for life.
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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!!
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.
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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 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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Helpful -
Hug
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 ReactionsYes, as I have gotten older it seems that everything breaks.
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1 ReactionI 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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Helpful -
Hug
3 ReactionsSame.
There is an excellent Facebook group for people who are experiencing PEs
Sorry to hear you have had multiple PEs; I had one back in 2008; I had pain in my left leg and knew something was wrong, went to urgent care and they had an ultrasound performed and found clots, so they gave me a injection of blood thinners and sent me home, told me to come back next day for another injection. I arrived and when they checked my oxygen with the finger test it was low at 60% so I was rushed to the hospital for many tests and was in ER for 7 days. I had no symptoms which was scary, no breathing issues, I felt fine. I am lucky to be alive and to have survived the night I went home after being told I had clots in my leg. Here to support you, I pray every day I never have clots again, but they did diagnose me with a change in my blood chemistry, my Factor VIII changed, and my blood now over coagulates so I am on blood thinner for life.