My father has been on the blood thinners for 40 years now since his artificial valve was installed in the 70's. He has never had internal bleeding, has had several surgeries for unrelated things as well. He does bruise very easily and it takes a long time for a bruise to go away. You have to pay attention to what is around you and decide on your risks. Mountain climbing might not be in the cards at the moment for you but lots of other activities are fine.Rin7835 wrote:
was only in the hospital for 1 day, but I am also on the dreaded blood thinners for 6 months. Nothing will scare you like being told not to fall so you don't die from internal bleeding!
CPAP and Pulmonary Embolism
- BlackSpinner
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Re: CPAP and Pulmonary Embolism
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Mask: Hybrid Full Face CPAP Mask with Nasal Pillows and Headgear |
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71. The lame can ride on horseback, the one-handed drive cattle. The deaf, fight and be useful. To be blind is better than to be burnt on the pyre. No one gets good from a corpse. The Havamal
- MarylandCPAPer
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Re: CPAP and Pulmonary Embolism
Have you, by any chance, had a recent surgery or been on a flight or something where you had to sit for a longer than usual period of time? I have never had a pulmonary embolism, but several times, about 3 days after surgery, I would develop symptoms that would send me to the ER and they would do the whole workup for a pulmonary embolism because I had the symptoms. I sympathize with you. Even being told you POSSIBLY have a pulmonary embolism is scary. My surgeries were on the shoulders and in a female organ, nothing related to breathing.
My bad after-surgery experiences were long before being diagnosed with sleep apnea and using CPAP. I have had no PE scares since using CPAP, and have had a couple of surgeries post CPAP.
After the first PE scare, I make a point before any surgery to talk with the anesthesiologist and tell them about my bad experience and wanting to avoid the risk of this happening again. They may be able to use a different type of anesthesia or otherwise modify what they do during surgery to avoid a PE scare. Since you have already had a PE, for no apparent reason, I would definitely remember to do this before any future surgeries. The anesthesiologists seemed to appreciate being told and being consulted for ways to make my post-surgery as smooth as possible. In more recent surgeries, I have met with the anesthesiologist the day of the surgery and given them my story, and also told them that I use CPAP. They always make notes on the charts, so it seems like even a past PE scare and CPAP use / sleep apnea is something they like to know about.
Good luck with your CPAP therapy. As others have said, your doctors should answer all your questions and concerns. A PE is serious and you have the right, as a patient, to get answers that make you comfortable with treatment.
My bad after-surgery experiences were long before being diagnosed with sleep apnea and using CPAP. I have had no PE scares since using CPAP, and have had a couple of surgeries post CPAP.
After the first PE scare, I make a point before any surgery to talk with the anesthesiologist and tell them about my bad experience and wanting to avoid the risk of this happening again. They may be able to use a different type of anesthesia or otherwise modify what they do during surgery to avoid a PE scare. Since you have already had a PE, for no apparent reason, I would definitely remember to do this before any future surgeries. The anesthesiologists seemed to appreciate being told and being consulted for ways to make my post-surgery as smooth as possible. In more recent surgeries, I have met with the anesthesiologist the day of the surgery and given them my story, and also told them that I use CPAP. They always make notes on the charts, so it seems like even a past PE scare and CPAP use / sleep apnea is something they like to know about.
Good luck with your CPAP therapy. As others have said, your doctors should answer all your questions and concerns. A PE is serious and you have the right, as a patient, to get answers that make you comfortable with treatment.
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- SleepyEyes21
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Re: CPAP and Pulmonary Embolism
You are so welcome for the information, Rin! And I understand about having your fears validated too.. you have a lot going on all at once to get used to, and at a young age too! I am twice your age, and had children by the time I had my PE. Yet, like you, there is no family history of clots/ blood disorders, none for sleep apnea, and zero for migraines (which I've had for the past 9 years.) Luck of the draw, I guess I also was terrified about falling or even hitting my knee on the corner of my desk, thinking I'd have a massive bleed in the beginning with the blood thinner It's all so new to you & just takes time to understand it and take it all in. Fortunately, one of my daughters is a nurse, and she helped me understand a lot of it. I had the genetic testing after 6 months of blood thinners like it sounds you will be doing too; mine came out showing nothing strange, so they still don't have an answer as to what caused it (yay!)
Maryland is giving you good advice about telling your docs in the future about your PE; also tell your dentists/ oral surgeons. Anytime I travel by plane/ train/ auto or have to sit for long periods of time, I wear compression socks to avoid swelling in my feet. You may notice some swelling in your feet after this PE incident is over; it happens sometimes- talk to your hematologist about it. If you'd like to talk further, feel free to send me a PM. Take care, Rin
Thank you very much for the information! It is very comforting hearing from a CPAP user with a history of pulmonary embolism. I think more than anything else, having my fears validated instead of dismissed helps a lot. One of the nurses at the ER mentioned the sleep apnea could have actually caused the embolism, but the er doctor couldn't confirm that and my GP really just wasn't sure about it. I was only in the hospital for 1 day, but I am also on the dreaded blood thinners for 6 months. Nothing will scare you like being told not to fall so you don't die from internal bleeding!
I'm a 0 risk for pulmonary embolisms - young, active, healthy weight, healthy blood pressure, not on any birth control, never had a pregnancy, no history of blood clots in my family. It seems the sleep apnea is the only risk factor I have for it. I'm being tested for clotting disorders by a hematologist - but that's not until the end of July. I still am very scared, but I've gotten a lot of reassurance and information here. I'm glad you shared your story with me. I don't feel so powerless and alone anymore and I'm beginning to embrace the idea of the CPAP. Thank you![/quote]
Maryland is giving you good advice about telling your docs in the future about your PE; also tell your dentists/ oral surgeons. Anytime I travel by plane/ train/ auto or have to sit for long periods of time, I wear compression socks to avoid swelling in my feet. You may notice some swelling in your feet after this PE incident is over; it happens sometimes- talk to your hematologist about it. If you'd like to talk further, feel free to send me a PM. Take care, Rin
Thank you very much for the information! It is very comforting hearing from a CPAP user with a history of pulmonary embolism. I think more than anything else, having my fears validated instead of dismissed helps a lot. One of the nurses at the ER mentioned the sleep apnea could have actually caused the embolism, but the er doctor couldn't confirm that and my GP really just wasn't sure about it. I was only in the hospital for 1 day, but I am also on the dreaded blood thinners for 6 months. Nothing will scare you like being told not to fall so you don't die from internal bleeding!
I'm a 0 risk for pulmonary embolisms - young, active, healthy weight, healthy blood pressure, not on any birth control, never had a pregnancy, no history of blood clots in my family. It seems the sleep apnea is the only risk factor I have for it. I'm being tested for clotting disorders by a hematologist - but that's not until the end of July. I still am very scared, but I've gotten a lot of reassurance and information here. I'm glad you shared your story with me. I don't feel so powerless and alone anymore and I'm beginning to embrace the idea of the CPAP. Thank you![/quote]
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SleepyEyes21
Re: CPAP and Pulmonary Embolism
In the "old days" your GP would have gotten the pulmonologist on the phone and said "I'm referring this patient to you but since she can't get in to see you for several weeks can you tell me if CPAP therapy is contraindicated with PE?" It seems like these days she could at least send an email to the specialist.Thank you for the information! I do have a GP and I saw her today. She told me to ask my pulmonologist or sleep specialist for more information, but the referral for the pulmonologist was just put in today.
It's bad enough that doctors don't communicate well with patients, but when they don't even communicate with their colleagues every one is like the blind men and the elephant.
Sad. And boy, it makes me feel old to remember the "good old days".
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Taming the Mirage Quattro http://tinyurl.com/2ft3lh8
Swift FX Fitting Guide http://tinyurl.com/22ur9ts
Don't Pay that Upcharge! http://tinyurl.com/2ck48rm
Re: CPAP and Pulmonary Embolism
I can remember when they made house calls. When I was a little boy and my grandmother had a heart attack at 3 in the morning you just called your Doctor at home and he came to the house. I read that they are running a study of going back to house calls for older people cause it's cheaper to see them at home than in the office and easier on them.Janknitz wrote:Sad. And boy, it makes me feel old to remember the "good old days".
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- BlackSpinner
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Re: CPAP and Pulmonary Embolism
Yes - my mother was referred to a doctor that specialized in geriatrics who made house calls. He was wonderful, he would come by and spend 30 -45 minutes with us every moth. If there was a problem the PA would be there the same day. Unfortunately the weekend she died was Easter weekend and he was away and his fill in was more then a little green and wet behind the ears but at least he showed up.squid13 wrote:I can remember when they made house calls. When I was a little boy and my grandmother had a heart attack at 3 in the morning you just called your Doctor at home and he came to the house. I read that they are running a study of going back to house calls for older people cause it's cheaper to see them at home than in the office and easier on them.Janknitz wrote:Sad. And boy, it makes me feel old to remember the "good old days".
_________________
Machine: PR System One REMStar 60 Series Auto CPAP Machine |
Mask: Hybrid Full Face CPAP Mask with Nasal Pillows and Headgear |
Additional Comments: Quatro mask for colds & flus S8 elite for back up |
71. The lame can ride on horseback, the one-handed drive cattle. The deaf, fight and be useful. To be blind is better than to be burnt on the pyre. No one gets good from a corpse. The Havamal
Re: CPAP and Pulmonary Embolism
First of all Apnea causes the blood to become very thick. See below. I had DVT with bilateral PE in June of 2014 and remained on Xarelto for most of the year. I would not hesitate to go back on Xarelto if needed. It is great stuff with very low risk of bleeding.
I may have over looked it but where did you PE originate? Bottom line - you probably had the clot because of Apnea. The quicker you can get treated (CPAP/APAP) the quicker you are going to reduce the life threatening aspect of thick blood and clotting.
Here's a couple of references: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3267624/ and http://bloodflowonline.com/medical-brie ... ap-therapy
I may have over looked it but where did you PE originate? Bottom line - you probably had the clot because of Apnea. The quicker you can get treated (CPAP/APAP) the quicker you are going to reduce the life threatening aspect of thick blood and clotting.
Here's a couple of references: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3267624/ and http://bloodflowonline.com/medical-brie ... ap-therapy
Re: CPAP and Pulmonary Embolism
Just curious where you read that "apnea causes the blood to be very thick"?
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Re: CPAP and Pulmonary Embolism
The first link above appears to be temporarily down but see this: http://bloodflowonline.com/medical-brie ... ap-therapy
There are multiple studies linking Apnea and blood viscosity. I would guess it's one of the reasons Apnea, heart attacks and strokes are so closely linked...
There are multiple studies linking Apnea and blood viscosity. I would guess it's one of the reasons Apnea, heart attacks and strokes are so closely linked...
Re: CPAP and Pulmonary Embolism
Thank you.
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- SleepyEyes21
- Posts: 465
- Joined: Thu Aug 07, 2014 9:28 pm
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Re: CPAP and Pulmonary Embolism
Thanks for the info, stcrim. The first link is working for me. I never found out where my clot originated because I was admitted to the cardiac ICU on a Friday, and the orders for the leg ultrasounds got screwed up twice, so by the time they did the test they couldn't tell. The docs told me that most clots do start in the legs though, so they are just assuming that for me.stcrim wrote:First of all Apnea causes the blood to become very thick. See below. I had DVT with bilateral PE in June of 2014 and remained on Xarelto for most of the year. I would not hesitate to go back on Xarelto if needed. It is great stuff with very low risk of bleeding.
I may have over looked it but where did you PE originate? Bottom line - you probably had the clot because of Apnea. The quicker you can get treated (CPAP/APAP) the quicker you are going to reduce the life threatening aspect of thick blood and clotting.
Here's a couple of references: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3267624/ and http://bloodflowonline.com/medical-brie ... ap-therapy
If anybody ever has to deal with a clot and you qualify for use of this device, ask your physician/ hospital to use what is called the Ekosonic catheter (Google it.) This is the procedure I had done to break down my clot within 24 hours. The hospital I was admitted to was involved in a research study with Ekos at the time I was admitted, and I fit the criteria for the study, and agreed to participate in the treatment. It is minimally invasive, and my clot was almost dissolved within 24 hours. The other option for treatment was a week or more on an IV drip of TPA and blood thinners to try to get the clot to break down. No thanks!
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SleepyEyes21