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.
chicago58
this has been the most unbelievable week i can imagine. i have been going to the mountains twice a year for the last thirty years. i normally reside at sea level actually +1 foot our woman's retreat was at the 6000 foot level. i have been to my special place a number of times since the first embolism with no breathing problems other than what you would expect at the 6000 foot level. i have been very sick this year with many problems. my breathing and o2 sats have been fine for months no cause to worry about going to the retreat. even my dr gave me clearance by orders of the other 7 woman i was going with. they would not let me in the car with out his clearance.
when we got to the top of the mountain i did many stupid things first was not letting anyone know i was scared to death. i had gone to the cabin feeling really confused and dizzy pulled out my monitor and it said 73 so i said BROKE. warmed my hands tried again still said 73 i still said BROKE someone else came in the room i checked her it said 98 i said oh shit i am in trouble. well i wasn't about to tell 7 other woman we had to leave after driving all day to get their and the only other way off the mountain was helicopter. so i kept my mouth shut and slept for the whole weekend with sats between 73-88. i tried to read my notes from the first session of our meeting and it was scribble and i could not make out any of the words. that was when i just said i had the flu and laid down. now ya all are gonna chew me out. i do really stupid things in the heat of the moment thinking if it got to bad i would speak up.
we came off the mountain after three days sat's returned to normal thought good no damage no harm no foul. next morning i drove 250 miles for a VA medical appointment oh how dumb can one be . my sats's were fine when i left but the damage was their. i got to my appointment when the nurse checked my sats it read 78 next thing i see is a doctor coming to talk to me then she left the room i could hear another doctor who i knew was the head of the department behind the door saying let me be the bad guy. so they both come in the room to tell me i wasn't going home the ambulance was on he way and i had no say so. so hear i am 250 miles from home with a purse and a phone and nothing else had to leave my car all alone in the middle of los angeles. my baby left to get vandalized which it didn't. i ended up 5 days in the hospital and no answers. my sats have not been below 90's in months. this was not on my radar. nothing to prepare me for it. i have been up to the mountains many times since the first clots and even since the lung hemorrhage last year. it was never my enemy.
the only thing the doctors are guessing is additional scar tissue and the burden on the cumulative burden was to much.
they want me to get tested something called an altitude test in a hypoberic chamber. because my kids live in the mountains i gotta know that i can go see them and not got hypoxic on them and me. we will see if anyone figures out when where and who the test is done and if medicare will cover it.
and to make all of this the worst week i could imagine i have had an adopted grandma for thirty years whom i have loved with my whole heart and i got word while i was in the hospital she didn't have long. i was driving the 250 miles home and was almost their to be with her when i got word she had passed away. i was only one hour away. i got their in time to see her before the mortuary came and help them in the wrapping of her body and carrying her out for the last time. most people can't handle that to me it is a gift one last time to do the things you think you could never do but for a loved one anything. actually scared me even more knowing full well that could have been me in my foolishness and not letting someone know when i am in deep do do.......
when we got to the top of the mountain i did many stupid things first was not letting anyone know i was scared to death. i had gone to the cabin feeling really confused and dizzy pulled out my monitor and it said 73 so i said BROKE. warmed my hands tried again still said 73 i still said BROKE someone else came in the room i checked her it said 98 i said oh shit i am in trouble. well i wasn't about to tell 7 other woman we had to leave after driving all day to get their and the only other way off the mountain was helicopter. so i kept my mouth shut and slept for the whole weekend with sats between 73-88. i tried to read my notes from the first session of our meeting and it was scribble and i could not make out any of the words. that was when i just said i had the flu and laid down. now ya all are gonna chew me out. i do really stupid things in the heat of the moment thinking if it got to bad i would speak up.
we came off the mountain after three days sat's returned to normal thought good no damage no harm no foul. next morning i drove 250 miles for a VA medical appointment oh how dumb can one be . my sats's were fine when i left but the damage was their. i got to my appointment when the nurse checked my sats it read 78 next thing i see is a doctor coming to talk to me then she left the room i could hear another doctor who i knew was the head of the department behind the door saying let me be the bad guy. so they both come in the room to tell me i wasn't going home the ambulance was on he way and i had no say so. so hear i am 250 miles from home with a purse and a phone and nothing else had to leave my car all alone in the middle of los angeles. my baby left to get vandalized which it didn't. i ended up 5 days in the hospital and no answers. my sats have not been below 90's in months. this was not on my radar. nothing to prepare me for it. i have been up to the mountains many times since the first clots and even since the lung hemorrhage last year. it was never my enemy.
the only thing the doctors are guessing is additional scar tissue and the burden on the cumulative burden was to much.
they want me to get tested something called an altitude test in a hypoberic chamber. because my kids live in the mountains i gotta know that i can go see them and not got hypoxic on them and me. we will see if anyone figures out when where and who the test is done and if medicare will cover it.
and to make all of this the worst week i could imagine i have had an adopted grandma for thirty years whom i have loved with my whole heart and i got word while i was in the hospital she didn't have long. i was driving the 250 miles home and was almost their to be with her when i got word she had passed away. i was only one hour away. i got their in time to see her before the mortuary came and help them in the wrapping of her body and carrying her out for the last time. most people can't handle that to me it is a gift one last time to do the things you think you could never do but for a loved one anything. actually scared me even more knowing full well that could have been me in my foolishness and not letting someone know when i am in deep do do.......
Listen, I have made my share of serious mistakes. Because I didn't get health insurance like I had planned to (even researched online while I was deathly ill with my "pneumonia" before I got the real diagnosis of PEs) -- now I don't have a shot in hell of getting health insurance.
It's very easy to do "dumb" things when facing this kind of health issue, because we like to think we can handle things like we did before, when surprise -- nothing is the same!!!! I tried to wean myself off my warfarin with the help of a chiropractor last month -- I must have been delusional and he should get his license taken away! I started getting leg pains and headaches and had to up my dose back to what it was originally. Talk about dumb!
But mistakes are all a part of this recovery process -- we are in it for the long haul ... some of us for years or for life ... just be glad you're alive okay? We need to forgive ourselves and just try to do better next time :) I have an independent streak like you too, and it gets me into trouble sometimes. But sometimes it can be good though :)
FGS- just checking in before I runoff for the day. I don't know where you live, but I'm in Illinois. I was in your exact same position; no health insurance when I had the PE's. I'm long-time self-employed and had wonderful private insurance for 14 years, that even included alternative/complimentary care like chiro, accu, etc. Then the co. went out of business in 2008, and I could not get covered due to "pre-existing conditions" like HBP and even sinusitis!
You wrote: "now I don't have a shot in hell of getting health insurance." Maybe not.
In September of 2010 (ironically, a week after I was hospitalized, ugh) a program opened up in my state called the IPXP, the IL pre-existing condition plan, a direct result of Obama's health care changes (sorry neo-cons / republicans, but "Obama-care is actually helping people!). It has an affordable premium, has different levels of deductible, a PPO feature with a 20% co-pay, and very good pharmacy benefits. I found out about it by chance, and I'm thrilled to have it. They are not allowed to "advertise" it, that's why hardly anyone knows about it.
Perhaps there is something like it in your state? I would encourage you to check into it, as just having an insurance card (unfair, sad, but true) puts you into an entirely different, higher, and more accepted class of patient. I hope this info can at least give you some hope and point you in a useful direction. Good luck and let me know how it works out.
It looks like I am eligible:
https://www.pcip.gov/
lack of insurance or under insurance i am sure is that cause for many of our collateral damage or additional complications.
as for last week. i make foolish decisions often based on finances because i know i can't pay for anything more than insurance chooses to cover. but like this weekend i thought i had it covered i was not going to ruin 7 other peoples weekend. so i didn't tell them how low my sats were and just thought if it got out of my definition of control i would say something. well when i read my attempt at notes from the retreat from just the first hour it scared me. i had no capacity to judge when things were out of control. my notes were scribble and incoherent. i could not for the life of me figure out what i had been trying to write down. that was the first hour. after that i just said i had the flu and slept and cried because i was missing out on my long anticipated refuge in the mountains. what scares me even more is no one has an answer and i am afraid my precious time in the mountains may not me an option any longer. i don't think i can handle that. this is my place to restore sanity in an insane world so quite and beautiful this year we got snow i felt like i was in heaven. where i live i do not get snow but once ever ten years or snow lucky me. i have an appointment with the pulminolagist on Wednesday i have a long list of questions and he is one that does not blow me off. i hope to get some answers.
And don't worry about the other ladies. You didn't ruin anything. Think of how your death would have ruined things? They obviously care for you a great deal, as they made the doc "sign off" on the trip. How could you have known?
Sorry about your loss; they are never easy. Good luck with your tests and know we will be with you in spirit as you do battle with the insurance companies. Stay in touch.
about an hour away yes we do have some of the most beautiful scenery and mountains. the doctors act like it is no big deal just avoid high altitude. they must not live in the same California i do . it is not an option to avoid the mountains. many of my friends and family live in the mountainous areas. i live in heaven but still have alot of my heart in Chicago and miss an occasional snow storm to feel like i am back home with out actually going there.
as for my friends i didn't tell them about the o2 problem till we were off the mountain they were not happy with me. i don't have a rats chance of going back next year until the doctor finds a away to make it safe via oxygen or what ever other methods are available. but i intend on being there. i will have to pass there inspection also .