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Pulmonary embolism survival rates thes days!
Started by Ali
Posted: December 22, 2008 at 16:08
I wasn't sure how to title this but wanted to say that I lost my mum 32 years ago, (who I never ever remember her having any illnesses whatsoever) after she took ill with leg pain one day, she phoned the doctor who sent her to hospital and 36 hours later she very sadly passed away as the clot had moved to her lung.

What has changed from then until now regarding the treatment of a blood clot? My mother had never been ill in her life but suffered with varicose veins so presumabaly the blood clot stemmed from that!

I have read so many posts on here where people have DVT, clots etc and receive treatment and survive what would have killed someone 30+ years ago but I suppose it's like everything, medical research just progresses all the time.

I would be interested in hearing what anyone has to say and if they know people who died several years ago and who would probably easily survive these days!

Thanks Ali


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Reply #1 by Chris Jones
Posted: December 22, 2008 at 17:35

I personally feel the health boards and medical sciences have moved on greaty since your mother sadly passed away. My thoughts are that the diagnosis now are fantsatic with the MRI/CAT/BLOOD scans which are open to us.

Although in saying that many deaths are also not neccessarily very fully investigated with regards to assertaining a cause of death through post mortem. In saying that i dare say that some causes of death are of that by a PE/DVT but many many factors come into this umberella. Having read many topics on here i feel the DVT/PE scenario is not fully appreciated by the media and peoples ignorance of the condition is rife, many dont understand the term DVT and just read about the economy class syndrome its been cruelly named by the media.

WE on here and i feel i can speak for most of us are just blissfully happy to have survived a condition which wipes out more people in the UK alone a year than breast cancer does, if only some one really famous gets it then it will be heeadline news and may be people will listen and wake up.

Hindsight can be a canny thing to have but i think with todays modern computers and diagnosis's and the data and information it may be your mother would have had a better chance but who knows. She would have had a more intense testing and thus this may have different in those days but who are we to judge.

I know this will seem to be rather upsetting for you but i think the options available nows from that 30 years ago are far more advanced.

Hope this will bring a slight enlightenment but if you scroll and read some of the stories here i will give you a greater appreciation of the great diverse areas we all come from and it shows that no one is safe from this sometimes fatal illness.

Be safe and keep in touch.

chris jones
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Reply #2 by Char
Posted: December 22, 2008 at 20:36
My Grandmother died of DVT and sudden death, probable PE in 1942, Coumadin was not available. My Mother had 3 events of DVT/PE, stayed on her Coumadin close to 4 years. (Coumadin appeared on the medical marketplace eary 1950's. I can remember it being prescribed to patients in 1961) Mother did not die from blood clots, lived another 21 years and died of cancer. Cancer gets so much more attention than blood clots, but more info is available. Some people such as myself have had blood clots and it can go unnoticed unless there is leg swelling or PE. The PE was my biggest clue; my Hematologist supported the fact that I probably had many small blood clots until the PE. Very important for me to stay on anti coagulants.
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Reply #3 by Joe
Posted: December 23, 2008
I guess there are two questions here... PE survival rate and PE prevention...
For me, finally knowing that I had multiple PE's... I realize over the past 3 years, I have had many PE episoded but was mis diagnosed until the recent episode... One problem was that I am a cyclist... and would tell the docs that I just felt tired... Or it was diagnosed as asthma... SO ... if you survive a PE its probably the role of the dice. and it appears that we have several contributors that have survived a PE... For me personally, I believe keping hydrated has saved my life... I drink at leat a gallon a day...

As for the prevention, while we HAVE coumadin and lovenox... we dont have many or ANY options... or even a good explanation for those of us who do not have the may turner syndrome, of a genetic disorder...

We (DVT peeps) are the step children of Cancer , blood pressure patients, and any thing else you can think of ... WHY! Coumadin is cheap , it works , and we are not a squeeky wheel...


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Reply #4 by Tom in Connecticut
Posted: December 26, 2008 at 16:25
Not only has public knowledge increased over the years but so has Healhcare Professional knowledge. My father passed away in 1986 from a DVT which broke off and went to his lung.

As much has medical knowledge has increased, here in the U.S. there still is a lot of deaths due to undiagnosed DVT/PE. Each year, about 900,000 Americans suffer from a DVT. Of that same number, around 300,000 of those same patients died. To make things worse, only about 7-percent of those patients who died were even diagnosed and being treated as having a DVT/PE.

Due to these statistics, deaths due to DVT/PE are one of the top three "preventable" causes of hospital deaths here in the U.S. Though these statistics are for the U.S., I'm sure the same problems exists in Canada, the U.K. and Europe. Finally after all these years the U.S. Government has placed DVT/PE awareness on his list of priorities. The U.S. Surgeon General has released a "Call to Action" to raise awareness. The Center for Medicare and Medicaid has targeted hospital acquired DVT/PE as a "never should happen" event and will not reimburse hospitals should a patient not receive appropriate prophylaxis to prevent DVT/PE during their hospital stay. Patient Advocacy to improve this has been a long road but one which has seen milestones.
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Reply #5 by ellieuk
Posted: December 26, 2008 at 17:39
Ali. My familiar history also similar. Mum died almost 3 years ago from "heart attack/stroke" or so PM said (I miss her every day despite the Alzheimers). She was 67. I wish I'd seen the signs - coldness in fingers/feet/nose etc/circulatory problems. Now because I've been ill relatively young and researched as much as possible I know more. Wish we'd known at the time but we didn't! I can't comfort you except to agree with others that medical science is improving and (I hope) getting better. Sending a BIG hug to you - rest of post is just anger so just ignore it!!!

Unfortunately here in UK we battle with NICE (what an inappropriate name but refers to National Institute of Clinical Excellence .... what B/S!). It actually refers to a Govt. dept. that decides whether we're worth saving or not. How much WILL it cost for our meds? Can the nation afford it?

All the best to ALL OF YOU!!! Sorry if inappropriate FORUM for my angst!!
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Reply #6 by Ronnie
Posted: January 27, 2011 at 21:22
I am now in the hospital with an pulmonary embolism in both lungs.
My Doctor tells me I am a vary lucky man.
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Reply #7 by Bill
Posted: January 28, 2011 at 13:33
In April of 09 I had a DVT/Blood clot in my right leg, from the groin to the knee. I had been feeling short of breath for about 2 weeks prior to this. I just thought it was getting old-out of shape. When the blood clot developed I went to the hospital and then they discovered numerous PEs. The Doctor said I shouldn't be talking or breathing. The scary part was I didn't see any warning signs (other than shotness of breath) and being a male I didn't pay attention to my body.


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Reply #8 by Jenny
Posted: February 12, 2011 at 23:27
I was just diagnosed with a dvt but was not screened for PE's should I have that done?
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Reply #9 by marie in franfurt
Posted: February 13, 2011 at 15:18
I a unsure whether treatment has improved.It is sometimes a matter of luck.
I had a DVt and was left untreated and in fact unseen for 16 hours at A and E in the Uk.Although D dimer tests showed positive for A DVT, my leg was huge and purple,I was sent home with paracetamol!!!!
I returned 5 hours later.......left untreated another day and again unseen by a doctors at the hospital.Left hopping to the toilet and back to my stretcher in the emergency room.Not knowing the dangers .Meanwhile, drug addicts came in and were given fixes and police came with criminals to get their wounds patched up ,doctors laughed about treating patients within 3 minutes........During which time my Dvt went from navel to ankle and I suffered PEs in both lungs.My life was saved by the intervention of my husband who asked a private hospital to take a look at me.They were shocked at my condition which had been left undiagnosed.Priority based on life threatening illnesses?That does not exist .Only in films.Real life is frightening and I fear for anyone who goes to St Peters Hospital emergency room in Chertsey England or any other NHS hospital in England.
It is disgraceful that people are left to die when treatment is available, and that junior doctors with less knowledge than the average person are left in charge of life and death situations.
Is it arrogance,pure laziness,lack of training or just get them out of here and let them die outside attitude?Or perhaps financial?They should be made accountable for their negligence or malpractice.In the Uk however,it seems we the patients have no say or powers to hold doctors accountable for their actions.A DOCTOR GETS A SLAP ON THE WRIST AND WE GET A LIFE LONG DISABILITY!
I am still unsure but what I do know now is, that if we do survive all the odds , we are sometimes left to struggle with the disability and consequences alone.

I survived but it was only luck and god which saved me.
Eventually returning to Germany ,I was given little hope of any improvement.
Thanks to this forum ,I was able to research other options and I went to the US to get help.
Today , I am smiling again and almost symptom free but what about the others?Those that dont have the possibility of private treatment abroad.Those that dont know about this forum......or have no energy to fight anymore.
Spread the word ........
Perhaps a change in the way we pay doctors is due.Like in business....pay by results!

Good Luck

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Reply #10 by Ian
Posted: February 14, 2011 at 17:01
My mother died at the age 44 back in the seventies due to complications arising from a DVT.

There is a bit of a lottery here in the UK. My first DVT was diagnosed very quickly, half an hour passing from visit to GP and having an ultrasound scan. Probably helped that DVT was in the news at the time and I had just taken a long haul flight.

Second DVT took an age to diagnose - three trips to the doctors over a number of weeks. It wasn't till my leg swelled and turned purple was I referred to hospital. Even then I sat around for nine hours before anyone came to have a look at me. Amazing really it took so long given I had a history of DVT.
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Reply #11 by marie in franfurt
Posted: February 15, 2011 at 08:28
Oh no.then Ian it looks like you had a similar experience.
Making the general public aware is a great idea but getting the doctors to react and treat us is a dfferent matter.Until that time survival rates will not improve.Research,improved medication and treatment methods will have no effect if they do not attempt to administer them.We are still in the dark ages when it comes to getting through the doors of accident and emergency.Once there we often become just guinea pigs for the junior doctors .
The problem lies in the education of doctors and their management.That has to change.They have to wake up and be made aware of how serious it is and how debilitating it is after surviving all the odds.
Time and time again I hear stories of DVT sufferers being left waiting...The clock meanwhile ticking and our lives on the line.....
Strange ,I live in Germany and if you see an accident and do not stop to assist the injured ,you can be prosecuted.Therefore my question is.... Shouldnt we adopt this to the patient / doctor scenario ?We wouldnt leave someone on the road for 11 hours untreated, particularly with symptoms indicative of life-threatening danger.
Afterall,that is what they are paid for .Yes,paid for!Unbelievable!
Would be interested if this is worldwide or just a UK phenomenon?




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Reply #12 by Sue J
Posted: February 15, 2011 at 20:41
I'm sorry to have to write on my family's experience. Unfortunately my 29 year old very fit and healthy nephew died because nobody seemed to listen to him or the family when he complained about pains in his leg when he broke his heel. I agree with previous people who have posted,it seems that it is the luck of the draw as to whether someone listens to you. We have been told that its a silent killer I'm not so sure that this is the case. Not only did he complain of pains in his leg but he also had pains in his hips on the day before he died. He also was short of breath. On the last three days of his life he went into the trauma department and had his cast on his heel replaced. His dad had told the nurses that his son had pains in his hips and they only suggested that he sat on the couch to rest his back. My nephew had a fit in the shower on the morning before going into hospital but they don't seem to think that had anything to do with it either even though it was the day before he died. He was also very tired for two days running, again when we said about it they just passed it off. We have been very surprised at how dismissive the doctors are about the death almost saying that it was undetectable. This site seems to suggest otherwise and thank you for all those who have posted, as it gives us some insight as to what people feel when they have experienced a DVT or PE. Can anyone say if they have had similiar symptoms to my nephews. He had broken his heel two weeks before. Your experiences are valued as it helps us to understand if we are just being fobbed off by the doctors.
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Reply #13 by Kelly
Posted: February 22, 2011
Lots to read, first off - Ronnie - #6 hope you are doing well and that the worst is over. Its a long road back... take it one day at a time.

Sue-sometimes DVT;s and clots will form from a BLUNT hit.. or from having had surgery... so your nephew could have had it start from there. I am so sorry to hear of the shoddy treatment ..

My man suffered his first pulmonary embolism three years ago - no warnings and it almost killed him. in the first one - he had bumped his leg got a bruise and then two weeks later was diagnosed with pneumonia and sent home from the emergency room - had the xrays not somehow come across his OWN dr that same afternoon i am sure he would have died in his house that night alone..the dr called and sent an ambulance he knew it was a PE. Tests followed showed nothing and as most of you know the return to health is long and painful, he went on coumadin for 6 months and then they took him off.

One and a half years later - he suffered another one this one came on much faster like most 2nd time round. He was hospitalized for 5 days and we ran the family history and have come to find out it did run in the distant family and even more so he has what is called "Factor V Leiden" which in simple terms means - his blot clots too much (missing something to thin the blood) and so he will be on coumadin for the rest of his life. He is 47. Built like a brick shit house :) excellent health.. but in the end it had nothing to do with that. SOOOOOOOO I tell as many people as possible to look into this Factor V Leiden just in case :)


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Reply #14 by Steve
Posted: February 27, 2011 at 01:56
My son was diagnosed with a DVT in his left shoulder in September
2010. Although rare, when it does occur it is usually in young
athletes and is generally thought to be caused by a narrowing of the
space between the first rib and collarbone. This causes trauma to the
main vein in the shoulder and over time, damage to the inside of the
vein can trigger the clotting process. At the time he was diagnosed,
he was put on coumadin and we were told that the body would dissolve
the clot on it's own over 4 - 6 weeks......well, guess what, that is
not what happens. Two weeks later we were told by the vascular
surgeon (he also explained the cause), that the clot would not
dissolve but harden and form like scar tissue inside the
vein.....basically completely blocking the vein but the collateral
veins in the shoulder would eventually take over for the blocked vein.
It didn't make sense to me to leave the main vein in the shoulder of a
20 yr old blocked for the rest of that persons life....so onto the net
I went and discovered there are many hospitals that actually treat all
DVTs with a device called the Trellis Device that dissolves the clot,
meaning no worries about it moving or breaking off and causing a
PE...however, not in Ontario but it is offered to all patients that
present with DVTs in Vancouver. It is also used in many hospitals in
the US. By the time I found this out, it was too late to treat my son
because you need to attack the clot sooner rather than later (ideally
within 72 hours but can get some good results up to 2-3 weeks after
onset). There are some videos on the internet as well (one good one
from Tampa Bay Hospital) showing how well it works for leg DVTs. I
would recommend to anyone diagnosed with a DVT to search out this
treatment if available in your area.....also check out the story on
Matt Pelech who plays in the AHL and was treated for a shoulder DVT in
early 2010. Just wish that Ontario hospitals would get their heads
out of the sand and look into using this treatment instead of the one
developed over 40 years ago.
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Reply #15 by Lynette
Posted: March 14, 2011 at 17:13
I was diagonsed of DVT and Pulmonary Embolism in July 2007, I have been hospitalised for more than 15 times due to recurrent PEs etc. Initially my boyfriend assaulted me and I fell and broke my knee. I went to a hospital here in London, all I got was a splinter and noone gave me any advise about a possibility of a DVT. Before this I had never heard of it. I now take 160mg clexane each morning (injection). My tummy is black due to injections, I bruise easily, If I stop taking the clexane the PE comes back again. I have been told I can suffer a sudden death anytime if I am not on medication. I go to the anti-coagulant clinic every week, month etc.
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Reply #16 by Vee
Posted: June 6, 2011 at 15:24
Its been 7 weeks and 3 days and I have gone through so many emotions and read-up on all the related topics.....................
My little brother, aged 27, died 7 weeks and 3 days ago. He had 11 years history of ulcerative colitis (inflammation in the colon) and he was doing very well and suddenly out of the blue he died. He didnt have any shortness of breath or swelling of the legs. Post-mortem results concluded a pulmonary embolism resulting from DVT.
I was very close to my brother, we always talked about this medical condition and what action to take next, I sometimes used to go with him to see his gastroenterologist consultant (who is shocked and cannot explain the death).
Not once was he advised of the danger of DVT or the risks of blood clots due to his ulcerative colitis condition.. The consultant states that since he was a very young and active man you would not expect such risks.
I go through the whole what ifs and what should and what could have been done but it brings me back to the thought I will never see him again and I or anyone else cannot change that.
More information and knowledge on DVT and Pulmonary embolism does need widespead knowledge and education especially among healthcare professionals and consultants.
When I go through it all in my head, I also think it is not a silent killer ...........
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Reply #17 by Vee
Posted: June 6, 2011 at 15:40
Its been 7 weeks and 3 days and I have gone through so many emotions and read-up on all the related topics.....................
My little brother, aged 27, died 7 weeks and 3 days ago. He had 11 years history of ulcerative colitis (inflammation in the colon) and he was doing very well and suddenly out of the blue he died. He didnt have any shortness of breath or swelling of the legs. Post-mortem results concluded a pulmonary embolism resulting from DVT.
I was very close to my brother, we always talked about this medical condition and what action to take next, I sometimes used to go with him to see his gastroenterologist consultant (who is shocked and cannot explain the death).
Not once was he advised of the danger of DVT or the risks of blood clots due to his ulcerative colitis condition.. The consultant states that since he was a very young and active man you would not expect such risks.
I go through the whole what ifs and what should and what could have been done but it brings me back to the thought I will never see him again and I or anyone else cannot change that.
More information and knowledge on DVT and Pulmonary embolism does need widespead knowledge and education especially among healthcare professionals and consultants.
When I go through it all in my head, I also think it is not a silent killer ...........
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Reply #18 by Jennifer
Posted: July 17, 2011 at 23:20
I recently found out I have multiple PEs in both lungs. I have asthma, allergies and a tendency to develop bronchitis so initially I was treated for that. My doctor made a lucky call and discovered the PEs at a very crucial time (I couldn't even walk from my door to my car without getting short of breath). Warfarin is working so far but there's still a clot in my leg and like many others with PE, just not out of the woods yet.
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Reply #19 by banc
Posted: July 23, 2011 at 18:48
Had minor knee surgery, 3 days later felt a soreness in my ribs. It went away and week later came back and the progressed into level 10/10 pain on a breath. When I went to the ER, they did a chest X-ray and the ER Dr. saw Gallstones and a plural effusion. I walked through the timeline of the knee surgery, rib pains 3 days later etc.. and he stuck with the gallstones and said I could go home or stay for obervation. I wasn't going anywhere. My brother (Dr.) gave them heck for not doing a CT , which they then did and found 3 PEs, one with an infarction. It was 3 weeks ago today. I rode 5 miles on the bike this morning. The only reminder is the tightness of the scar tissue on a deep breath. Had it not been for my brother, I might not be here. So it depends on the Dr. that treats you.
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