I'm curious, are there any other Pulm... - Lung Conditions C...
I'm curious, are there any other Pulmonary Embolism 'survivors on this site?
Yes! I survived 
Only asking as I saw this site url on Facebook & decided to join it. That done many of those on't seem to be sufferers of other lung related conditions. Conditions that are more ongoing than let's say ours'.
Whilst being diagnosed April 2011 with P.E.'s I've just found that with my daily Warfarin I'm probably happier/healthier than I was pre-P.E. yeah I mean prior to the symptoms exhibiting themselves & my hospitalisation.
I'm another one who survived.
Yes I was lucky I survived a saddle embolus in February 2012. Was in hospital for 6 days and have poorly ever since. How have others coped afterwards?
I never heard of it until you mentioned it........see there are so many diseases and illnesses that unless it hapens to you or someone you know they often go unheard. I did have an amniotic embolism after the birth of my daughter 2 years ago and didn't realise how bad the survival rate statistics are until after, so any embolisms are nasty and the fact we have survived is amazing.
Interesting, I looked up amniotic embolism and see what it is.Thankfully I won't get that causal condition. Yeah guess we're lucky after a fashion I wish the luck would rub off onto other aspects of our lives like winning major on the P.Bonds or Lottery
Hi Tanyamarie - it is amazing that we survive what we do I had never heard of my type of saddle PE until I experienced it first hand - and had never heard of an amniotic embolism until I read your post. I am glad I doscovered this group on FB - it's good to share experiences and to learn more.
Know feelin, was reading some of the 'blogs' elsewhere & they were coming out with abbreviated conditions I'd never heard about in my life. When I first went to my GP (central Buchan) late Jan. 2011 & many times thereafter till mid April, I was told I had ashma & got an inhaler thing, From Jan I was getting increasingly breathless doing things that never bothered me before, like walking to the bus (2 miles away) to get to uni.walking up stairs etc) my prob is I glory on I don't give up, but even I thought this was strange.Anyway the inhaler never worked. Then I was put for X-rays (clear), anti-biotics as one said I had a lung infection (getting there but still wrong) ECG's aplenty. Tried explaining it to one GP I'll call him Dr. D [eath] as I found him less than useless ( a common utterance by many in this locality), who shook his head I said he wasn't sure what ailed me. It wasn't till I saw another dr on the 20th of Apr 2011 who put's into ARI (Aberdeen)that I finally found out I had multiple P.E.'s. This was after a Gamma (?) scan the next day. I'd never heard of PE in my life. I looked up what it was on the bedside computer/telly thing(thing that costs a bomb to use) & I felt sick, but at least I was in the best place to be ill I guess. The medi site I looked at said I was lucky to be around going by the symptoms I was experiencing, leading up to say the 13th of Apr. when I had seriously severe symptoms, as I crossed the carpark from me bike to Lidls in Fraserburgh. That said I still went in got me cheese & diet coke, returned to the bike, had coke then went home like a rocket & popped an aspirin.Was told later taking the aspirin was on the best things I could have done.
Anyway I'm still here and as said previously I feel pretty good just now. Compared to how I felt betwixt Jan & April I do feel well, though I'm on variable Warfarin every day for my INR range.Thing I would say is get gen'd up on your condition but don't let it rule your life.I do pretty much everything I did before, hiking,walking,cycling sadly not motorbiking ;-( I'm just more aware of the risks I think. Watching what I do in DIY moments of madness or putting into my gob, risk assessment is good, awareness keeps you on the ball. Sorry to rabbit....
Re Lymdor above I'll look up a ' saddle embolus' to see what it is apart from maybe the obvious as in the name, sorry yer still poorly from't ;-(
Hi buchanloon - a saddle embolus is a large blood clot that straddles both entries to the lungs. Saddle emboli are often lethal because they prevent the entry of blood into the lungs and cause acute anoxia. I was extremely lucky to survive it! One the worst parts was laying on the pavement, struggling to breath and seeing people in cars stare and me and move on without offering assistance!
This happened in February 2012 the day after I had eight teeth extracted - can't help wondering if the two were connected in some way. I still experience almost daily chest pain, dizziness, nausea etc. Extreme fatigue - unable to work - but I am still here!
That sounds thoroughly scary/frightening and bloody sad that no-one came to your aid,some folk are so devolved from compassion nowadays :-(Folk are good at looking,bit like watching accident victims but doing f.all to help!.
As mentioned above I feel pretty good now but I watch out for any odd symptoms,thankfully there have been none or just minor.Off to the nurse on Mon for my INR test,soon be 3 months since was at'm last.None of the consultants can say why I got P.E's as I never fitted any of thew risk groups,I guess am an aberration case,much that I like being different it's slightly worrying,not that I dwell or speculate too much.
Eight teeth out...god 
I'll keep my fingers crossed for ye,I try to live in hope.
Thanks Buchanloon - a young girl came along eventually and stopped and called an ambulance for me and knelt beside me with her hand on my back - I cannot describe how reassured that made me feel - such a small gesture with a massive impact for me My INR is reasonable theses days and now have it checked every 3 - 4 weeks.
I just get so frustrated that I am unable to work or do much other than sit and read! Glad you are more or less back to normal - fingers crossed that soon I will be too - then I am due to have another load of teeth out! Ouch!
I tend not to worry bout things the same now, when my haema. consultant took's off the 'rat poison' a couple of months ago to clear't from my system for a Lupus test I nr. £$%$ myself, test was done,results-clear & back on I went on the W. Guess one has to weigh the pros & cons re the medication. I have a friend that 'tut tuts' re me taking any type of med, well sorry but I only take Warfarin & paracetamol, you feel like shaking such folk & shouting "do you realise this's keeping's well?".Some folk are right twats!.
My INR has to stay between 2-3, here's hoping too come Mon. it's in range. I most t watch my intake of most things that can affect it, ok some times I have ...a tipple which is really naughty but...again it's being aware of which things affect the efficacy of Warfarin.
Don't do as I did a whiley ago, shop in a Chinese supermarket & come home laden with with soya-bean rich things,S.B.'s are a risky foodstuff. Moderation though is the key, that's what I was told rather than cutting certain things out of yer diet.
Guess there's risks in everything we do now, you just have to weigh these risks out, but not allow our 'condition' to rule out lives.
Adieu...
HI Buch - thanks for that info - noone has ever mentioned soya beans to me and I live right next door to a chinese takeaway! LOL - not that I use it much - much prefer my own home cooked grub - when I have the strength to prepare a full freshly cooked meal! - Lymdor
Soya is a 'naughty food' the prob with me is I'm 90% vegetarian so up till of late I was using that TVP mince n stuff & of course it's soya, but as said before everything in moderation. I bought a tub of Black Beans (soya) oh heaven lol they didn't last long.
I rarely have a take-away anything, I don't stay nr a fast-food outlet, I'm 4 mile from my nearest village & fast food to me is looking in the freezer. lol
Had my nurse app. today in Strichen (4 mile away) so I cycled there n back, thought I would be in range but I was wrong. My INR was 4!, so my Warfarin dosage's changed & I have to go back next week, ah well it happens, but I've never had a 4 before, 3.2 yes but...
TTFN,
Wayne
HI,
I'm a survivor of a bi - lateral PE, Was the single most scary experince of my life, and similar to you I went undiagonsed by a couple of docs (was dischraged from hosp twice despite fitting three risk categories!).
My PE was probably as I had a baby ten weeks earlier by c - section. My physical recopvery was reasonably quick (a month or so), but I found it hard being seperated from my new born being in hospital and our emotional and bonding journey was much longer.
How did others find it adjusting to life and not being a bit "paranoid" of it happening again?
Sorry have avoided this site for 6 months (it's for the best), I just get on with life though I find dietary intake's a learning curve. My INR was low post festive period even though I take my rat poison on cue. Sadly all the veges I love fall into the high in vit. K category which I find sucks, but moderation is the key. Do have to watch out for injuries though,accidents sadly happen
Don't think we all fit into the 'boxes' they suggest PE sufferers fall into, life is not so easy.
My husband just survived a saddle pe he spent a month in the hospital they had to open his
Chest and removed the clots they left his chest open for
4 days and he was put on a vent then they trach him he didn't wake up for 9 days but now he's home doing therapy for strength on Coumadin His
All started from surgery to replace disc in neck surgery after that surgery about 3 weeks he set up blood clots thanks to the dr that knew to send him to the hospital that saved his life
Yes, I too am a survivor! Just survived my second one only two and a half months ago on Christmas Day 2012. Found this post while researching, once again, about saddle clots as that's what I had this time along with bilateral lower extremity DVTs (2 left, 3 right). There are many survivors of all ages that, like myself, have shared their survival stories and their continued life journeys afterwards through personal blogs, Facebook, and Instagram just to name a few. I'd like to share my story with you in more detail, but response space is limited. If you'd like to, you can read my story and connect with other survivors by checking out my blog at livingnotjustsurviving.word....
There you will also find links to other survivors blogs, medical resources, and support links.
As this happened to you last year, I hope that you have overcome the worst of it and are back to where you were PRE-PE.
Hope to hear from you soon and would love to share our stories and journeys. Good health to you!
Yes willoweagle I would like to hear from you. Email me at truckvilleram1@comcast.net , thanks
I suffered a saddle PE and was hospitalised for two weeks most of this in icuand hdu. SSpent most of the next year in hospital and now two half years later still suffering. I take a new drug called riveroxiban which acts like warfarin but does not require blood tests it is great.
my brother died because of PE in last august, he was very unlucky and he didn't even know he was suffering from PE
i'm a S PE survivor.
I had gone into the hospital with abdominal pains and had surgery for 3 different things, including appendicitis. 3 days later I was not responding to treatment and was diagnosed with the SPE. My family was told I probably wouldn't make it. Just HAPPENED the best surgeon in the state for that sort of thing was on duty that night. Took me straight to surgery and I "coded" in the elevator. They cracked open my sternum, took my heart out and put in on a machine, then proceeded to suck out the huge clots. I was in a coma for 2.5 weeks and recovery took months. That was 2010. I am now back to participating in our city's annual 12 (walking), exercising at the pool, and carrying on my art business. Blessed by God.
My son was diagnosed with thrombosis and pulmary embolisms at age 28 he is on Warferin for life and now gone 35 and doesn't let it affect him. He's really good, his only gripe is why does he have to pay for them when in his case without them he'd die as it's a life saving drug. In Wales they are free! I feel if more people got on to the Health Authority they would become free, drug addicts get their treatment free.
Yes I'm a survivor of massive pulmonary embolism. It happened 1/12/13. I was sitting on sofa at home and feeling find and the next thing I remember is waking up in the hospital 6 days later. My daughter found me breathing heavy gasping for air. My wife called 911 and they rushed me to the hospital. When I arrived in the ER the doctor said I needed a cat scan because he thought it was a PE. They took me down to the cat scan room and I coded on the table. A respiratory therapist heard the code and started CPR on me right away they rushed me back to the ER and started to work on me. They worked for 1hr and 15 min, I had 17 doses of epinephrine they also gave me 3 doses of atropine 3 doses max every 10 minutes but they couldn't keep my heart beating in sinus rhythm until the head nurse in charge had a idea from a previous case. They gave me a epinephrine drip, wide open, high concentration in normal saline in hopes to push the clot which would shatter in my lungs, it worked. They put me on a ventilator and in a artic sun protocol to preserve vital organs for organ donation if I didn't wake up. That evening my father-in-law came in to visit he brought with him his missal containing Father Walter Ciszek signature in hopes that he could save me. He read the communion antiphon for the 23rd Sunday after Pentecost: AMEN I SAY TO YOU, WHATEVER YOU ASK FOR IN PRAYER, BELIEVE THAT YOU SHALL RECEIVE AND IT SHALL BE DONE. I awoke shorty after the prayer. All brain function in tact. From their it was 5 months of therapy and hard work so I could go back to work. I'm currently taking Xaltero for the rest of my life as long as I don't have any complications. I am now back to work and enjoying life with my daughter and wife.
I had part knee replacement . go bad now I still have a bad knee and P.E to boot. I almost died in hosp.went in cardiac arrest. This was in jan. Still get chest pain taking eliquist 2 times a day . I dont know if i have to take this med.for the rest of my life. I guess I should be happy I am still above ground. I still go living do what i can. I still ride my harley have faith i my lord . good luck fellow P.E .ers. God bless us all
I suffered a saddle PE one week ago. Only someone who goes through something like this will get the emotional and physical toll it leaves behind. I'm 39 and now on lovenox and Coumadin . Anyone else prefer another blood thinner. Coumadin has so many restrictions and blood work. I am still short of breathe with exertion. I'm ok and I have a great family and group of friends but this is taking more of a toll than I let on! Would love to talk to you guys out there! Sincerely, Tonia S.
I almost died, it was a close call, I had huge multiple blood clots in both lungs.... It's happened twice to me now.... I am still here!!
I had a Pulmary embolism after a knee replacement in April this year, I am on rivaoxaban possibly for life,as I had one 42 years ago after a Caesarian op, my doctor said I won't get a scan after 6 months so how will I know if it's gone or not I am 75 years old.
I survived, but just barely. Mine was four years ago. The first two years of my recovery were pretty rough. The third year somewhat better. I've been feeling pretty well until about six months ago. I have days where I have no breath, feel light headed and faint and completely exhausted. I generally am very tired all of the time. I have fainted a number of times and have hurt myself when falling. I live alone, so sometimes it's pretty scary. My cardiologist says I'm fine, but I don't always feel fine. My hematologist did discover two gene mutations in my blood that make me susceptible to clotting. I'll be on warfarin to rest of my life. It stinks, but I'm alive.
I'm a survivor blessed to be alive.
I'm still around and as this posting was 4 years ago, I'm wondering about how you're fairing......; still in the group??
Hi, I've read through quite a lot of the posts and this seems like a very supportive environment. So here goes... I am 46 and was diagnosed with a Pulmonary Embolism just under two weeks ago. Had a brilliant GP who saw that I had a bad chest infection (the reason I went to the docs) but also wanted to rule out a blood clot as I had been to America at Christmas. Eventually turned out I had 'extensive' clots in my right lung and I was admitted for a few days.
I had expected to maybe have pneumonia and be sent home with antibiotics, so I think I'm still in shock at what actually happened! My husband has had DVTs in the past and is on warfarin, so I know life can go on as normal. But... The fact that it's in my lungs makes it feel different - more dangerous etc. Have been resting a lot - chest infection has cleared now but I still feel very tired and can only potter about for half an hour before feeling exhausted - is this normal? And will it get better? Felt a lot brighter yesterday but then this morning went downstairs to make a cup of tea and was so breathless and lightheaded I had to call my husband down and sit down. Back in bed and it's taken me over two hours to lost the breathlessness.
Scared that this is the way it's going to be now - I know it's early days so maybe I'm just panicking a bit! I'm on two doses of rivaroxiban by the way. Thanks...
Sally x
Hi Sally. Interesting reading your posting.
I too had a PE....2 very large ones I was told. This was 21 months ago. I was 47 coming 48 yrs of age....Slim fit and healthy.
In fact a ran many marathons...a 3hr marathon runner. A non smoker non drinker...very active. I'm a Thatcher by trade...a roofer.
It started off with 28inchs of a vein (DVD) in my inside leg.
Terrible pain in my calf muscle.
Accompanied by breathlessness. 4 days in hospital followed...clot busting injections in belly. Recovery is ok but mentally I'm not there yet...Still puzzles me that. Still not what I would call fit either...Still breathless....Not sure why. Someone suggested that the straps on my knee pads may of caused the DVD in my leg ( quite possible) That with dehydration.
I did have another one...DVD and clots in lungs 4 months later....After they took me off the blood thinning tablets.
A long rd it's been.
Not sure i realised it was that serious at the time....Life threatening they tell me now.
Thks very much for reading.
Tim Ellis....
yes I had one and I survived. It was a right shock when they said what it was though.
I am on anticoagulant treatment now for 6 months and I am hoping to make a full recovery as well.
im bloody glad I took myself off to a and e on the bus when I realised my symptoms weren't normal and I had struggled into a and e and it was a right shock when they admitted me onto a ward overnight and they reassured me it had been caught in time so can be treated.
I got sent home at tea time the following day with anticoagulants from the hospital pharmacy and was anxious about coming back but so far things have been fine and I am back walking again and doing household tasks so I should make a full recovery.
the consultant was nice though when he explained things and how the treatment is 6 months long with anticoagulents.
I survived! I found out I had bi-lateral pe's 2 days after new years day 2015 (I was 28 yrs old). I live in fear of them returning everyday.
I am a survivor. Scariest thing ever. Doing great now. It happened out of the blue in 2014. I was having shortness of breath after walking short distances and then eventually passed out on a walk on the beach with my kids and mom who just happened to be visiting me in CA from PA!! I was admitted to the hospital and had a chest x ray. It looked like fireworks went off in my lungs!! Wafarrin shots and days in the hospital cleared me up. Turned out I have a genetic blood disorder that my late father had that he didn't know about. I was taken off the pill which was a contributing factor to my PE. Living a normal life on no regular meds for this.
On July 6th I went into the emergency room with difficulty breathing. A few weeks prior I had developed two superficial thrombophlebitis but was assured they would resolve on their own. When I started experiencing the difficulty breathing I assumed maybe I was experiencing adult on-set asthma as I had no other symptoms. The ER doctors administered a breathing treatment and when that didn't work sent me for an ultrasound and then a CT with contrast. They found a large DVT in my left leg and a massive blood clot in my left lung as well as a smaller one in my right. I was transported by ambulance to a larger hospital and thrombolytics were administered. After 5 hours I started to bleed out and go into heart failure. I was rushed to the OR where they performed a sternotomy to remove the clots manually. I was then placed on echmo and put into a medically induced coma for the following 10 days. All together I spent a month I'm the hospital. I have been home for about a month now and am expected to make a full recovery with no permanent damage to my heart or lungs.
Is there any point in going on.
hi i'm new to this community & would like to know if there i any help out there.
Any other COPD sufferers out there getting chronic chest muscle pain?
Many thanks to all you lovelies on this site
