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 an...
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PE whilst in New York on Holiday - new member
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First of all I want to thank people on this site because their words of wisdom have been so supportive during a time when I feel so vulnerable and depressed - the way memebers have addressed sensitive subjects in a positive way is so refreshing.
I will try to keep my story brief - I had 3 PEs in my left lung which were discovered 5 days into my trip to NYC (visiting from the UK - I love NYC - got married there in 2006). I took ill in my hotel although I was poorly with very bad heartburn and anxiety, sickness and diorreah before this. We were on holiday with friends and I did not want to spoil their holiday by moaning on and so continued to do all the things we had planned - Rangers Game / The Sopranos Tour - it's quite surreal to think I was suffering a PE whilst walking around the Bada Bing!! Anyway, long story short, I was treated at St Vincents hospital and was given anxiety tablets, which I definitely needed at the time, lovenox and coumadin (warfarin in the UK). I had to fly home a week later and don't think I could have got on the flight without my Lorazepan (I came off them after a few weeks, as they refuse to prescribe them in the UK). At first I was relieved to have something diagnosed whilst in NYC so that my friends and husband did not think I was being dramatic, but I regret that now - they wouldn't have thought that anyway, but I am such a worrier (even though I am a therapist by profession!!) To make things worse - within a month of us returning from NYC, my mum was diagnosed with breast cancer and whilst she was having the operation, my uncle died and my nan had a shadow on her lung for which they said they will not do anything for her (she is 92). We also moved house and bought a puppy!!!!!!!!!!! It is only now that I am starting to work through my emotions and realise the amount of trauma I have suffered. This site has helped so much - even made me laugh (I think the post was by Knurney1 - sorry if I did not spell that right - when she called the pain she suffered some really funny names - the pain that creeps up on you when you least expect it!!). My treatment in the UK has been poor. I have moved house and so unfortunately that has not helped with continuity of care. I think I am lucky to have been in NYC when it happened - although it was very stressful being in an unfamilar place and having to try to get our head around insurance (I never met so many insurance people b4). My new doctor in UK said I was lucky to get a CT scan, as I would not have got that over here - too expensive - he said it was the Gold Standard of treatment. I am outraged by this fact - especially as I feel that I had a blood clot a year and a half a go after returning from Sorrento, as my symptoms were similar, but worse, and the ambulance man did not correctly diagnose me. I do not feel held by our health system and do not trust medical professionals at the moment because I have been told so many contradicting things. I was admitted to hospital on my return from NYC as I thought I had suffered another PE - it turns out I hadn't, but this nurse came and told me that I had (he had read the notes wrongly) - I then hyperventilated and was very upset at hearing this - they called the Doctor on duty, who told me that I am my own worst enemy and that all my crying and anxiety is not helping anyone!!!! My husband then said I had every right to be upset after suffering another clot - but he answered that I had not had another one and he wanted to know who had told me I had!!!! It was awful - he still told me to more or less shut up stating that there of hundreds of people walking the streets with clots who don't even know it - thanks Doc - that's a great help!! I think I better stop writing now, as I could go on and on and on (what do you mean I already have!!lol), but it's so nice to talk to others who have had a similar experience and are survivors. I felt that I should be better now and was mad at myself for not feeling well, I now realise that I am not meant to be fighting fit already. It is also great to show my husband posts from this support group. He has been so wonderful, but I worry that I am a pain because I am so morbid and anxious a lot. All my doctors have said that I would not get any pain from a PE, but I can still have really bad pain in my left chest on occassion - they have said this is muscular - costocondritus. The main reason I write is that our holiday was the last one before we started trying for a family - I am 33 - but now we can't do this - it is so frightening. I am sooo sad about this. Anyway, I went on didn't I - I will stop now. Dawn x Posted on 07/29/08, 12:07 pm |
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Hi there! I am really sorry to hear you had such a bad experience with the doctors that saw you and also with all the traumatic events going on at the same time. But I am glad you found this site to at least know you're not alone in dealing with PE. I am also a new member and I was diagnosed with PE about a month ago. When you said that:" All my doctors have said that I would not get any pain from a PE, but I can still have really bad pain in my left chest on occassion", I think you need to find some new doctors especially with the ones that treated you so badly.
And about the occasional pains that you have, I also do still have pains sometimes after I eat or just moved too quickly. Although I don't think they're as bad as yours. But honestly if they get really bad and they make you worried you should definitely go to the ER just to be safe. There's a number of topics on this forum that address pain after being in the hospital, so hopefully those will help you guide what's "normal" pain. Keep your head up! =) 
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Thanks SurvivingAmazon - I think you're totally right - I really need to find a doctor that actually be just a little bit sympathetic. I have an appointment in August with a Consultatnt to discuss what happened, but I had to keep asking for that until they relented - my Doctor asked me who he should refer me to????
I am going to see a different Doctor next week hopefully. I will take your advice and go the ER if I feel poorly, but on the occassion I have been back they normally just do blood pressure and oxygen in blood tests - they would not do another CT scan - they said there would be no point as even if I had another one they would still use the same treatment. It sounds like you are doing really well after your PE. I think I would rather be treated in the USA - it was very very stressful with the insurance companies, but over here you have to fight to get anything done. They call it a postcode lottery here (zipcode) - some hospitals offer treatment and others don't. They really seemed to know what they were doing over in USA - in a wierd way I feel that NYC saved my life! I am positive on some days, it was just today that a nurse said something flippant and it sent me over the edge!! Mind you if she had not said it then I would not have found this web site today and found all this great support - so it was a good thing. I think I just want to get my tests done and finally try to get some closure so I can move on. My puppy has been so great - stopped me dwelling on things and keeps me active. Do you find that cheese or onion adds to the pain? I have been trying to monitor what makes the pain worse and I think cheese might be a trigger. Thanks for your reply again - it has brought my anxiety levels down a good bit. Dawn x
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Awww you have a puppy? That would definitely keep my mind off everything. I'm glad you have something keeping your mind off your worries! =) And I am very glad to hear that you're looking for another doctor because the other ones sound so insensitive to your needs and worries.
For the pain, when I had frozen yogurt it kinda made the pain worst when I got out of the hospital, maybe because it was really cold. Also I find that my stomach is more sensitive to dairy. When I first got out of the hospital and still haven't accepted the full reality that I have PE, I was very sensitive to comments that implied I was back to normal and that everything was all fine. It basically made me feel like if I did complain about pain or anything then I was just being a baby. But after I realized that what we have is something serious and I am the only person who knows how my body is feeling, then I really didn't care what people's comments were. It definitely took me a little while to accept everything, and trust me I have been through my nice emotional roller coaster for about 2 weeks after I got out of the hospital. But you sound like a very strong person especially fighting off those doctors and nurses! I think after everything settles down you'll find the closure you need. Best of luck to your recovery!! And thanks for sharing your story, it always reminds me of how strong people can be and helps me when I do have my downer moments. =D
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Oh my gosh, Dawn! You have been through the ringer! Shame on those doctors! I can't believe they would dismiss all of this as anxiety ... to be sure you're going to suffer anxiety when something as serious as this happens, though. I cant' stand that "it's all in your head" attitude that some practicioners have. It's not in your head, and then pain is not just muscular (although some of it will be). And as you will read on this site, many of us have experienced immense pain from the PE (so that one doctor was seriously misinformed or just ignorant). It bugs me when people just treat it comically, or they pretend like they don't know what it is even after the 11th time I've told them. My neighbor was telling people I had a heart attack(!). I told him, "If you insist on calling it a heart attack at least be accurate and tell people that my lungs had a heart attack!" Ha ha.
The only thing that one doctor was right about was that lots of people do have clots. But ... lots of people's clots do not turn into life-threatening PEs, so you're perfectly within your rights to cry, be anxious, worried etc. And, I know one person in my personal experience who is on warfarin for life due to a blood clot (she's never experienced a PE). PEs are not something to take lightly and most here have received advice to go directly to Emergency if anything truly worries us. I had one doc say, "Maybe on your 12th 'false alarm' visit, we'll start to revoke your ER privileges." So, I'm hoping you've been to see at least a hematologist? If not, keep pushing for it. You just seem to have had a really bad run of luck with health care ... keep trying until you find someone who understands this for what it is. I would have been outraged to have been treated like you've been treated. My dad died of a PE 8 years ago, so I KNOW how quickly they can change everything. I know what you mean about trying for kids. I'm 36, never been married, never had kids, and have finally found someone with whom I want to do that ... and now here I am stuck on warfarin for a year (as if my biological clock wasn't ticking loudly enough)! And now ... on a lighter note: you found this site ... vent all you want! Ask questions ... we're all here to help. There are a fair number of people here who live in the UK, so hopefully they might be able to help guide you in the righ direction? Ooh, and cuddle that puppy of yours and let that do its magic. Hang in there and take care, ok?
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Dear Dawn,
I'll keep this short because I need to go to sleep, but I just wanted to encourage you to hang in there.... this board has been amazing to read through all the older posts and getting the advice from people who have gone through the same serious and life changing event of a pulmonary embolism. We are truly survivors and I am so thankful for all of you. My prayers are with you as you navigate the system in UK and hope you feel better each day....
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Thanks to everyone - my mood is so much better today,as I do not feel so alone. Even though I have really lovely friends and family it is totally different talking to others who have experienced the same trauma.
Survivingamazon - it is strange how dairy does seem to have more of an affect on the pain. It sounds like you're a very strong person too and it is rightto remember that we are survivors - our bodies must also be super resiliant on some levels to have coped with the clot in the first place - our immune systems must have strong fight in them - just like our minds!! I agree that we have to be assertive and put oursleves first when we are poorly, as only we know how we feel - this event will hopefully help me to be more assertive and not worry so much about what other people think - especially Doctors!! lol KHurney1 - thanks for your reply - I have read previous posts by you and they made me laugh out loud - it is my first time laughing about the situation, which is what I really needed because humour in itself is a great healer. My biological clock is also ticking like Big Ben, but I think everything happens for a reason and so it's good we know what our complications might be in advance before they become complications if you know what I mean. I am seeing a specialist 3 weeks today and have written a lot of questions down to ask. I thought it was funny when you said about your INR level being stable and then it wasn't and you berated yourself for being smug about it - my dad is also on Warfarin and we often have competetions on what our numbers are - well, it's one way to lighten the mood - he has meds for his heart - although I suspect he might have clotting problems that he has never checked out, as when he has returned from flights he has been very ill. My puppy has been so cute and I cuddle him to bits to cheer me up. Just like SurvivingAmazon (I mistyped her name then as AmazingAmazon and had to retype, but I think that was a nice wrong typo because she sounds like she is)- I think your posts have been so intelligent and positive - you haven't skipped over the seriousness of the illness, but showed how we have survived it and will get better in a really sensitive way - thank you. AlexandraK - thank you for your kind wishes and i will look through all the old posts. I will hang in there, as this group has restored my faith in human kindness - again I think things happen for a reason and I hope to become a stronger person after this - as I am sure you are. God bless you all too.
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Hi DawnUK- I understand the frustration of trying to plan for a family after PE!! However, do I understand correctly that you've been told you can't have children because of this? I know everyone's circumstances are different, as we all suffer or suffered PEs for different reasons....but, I am also struggling with the family planning piece of this whole experience. I had my PE in Oct 07 after giving birth to my daughter via C-section. I have no blood disorders, but pregnancy and surgery are both risk factors and viola! I had a PE a day after giving birth. Anyway, I have consulted with my OBGYN, who said that I could get pregnant again, and I would just need to take Lovenox or Heparin injections. Can't get pregnant on warfarin! While the thought of having to take injections every day for 9 months (plus for awhile afterwards)is NOT something I look forward to, I'll do it if I have to. I was just wondering if you've been able to research some more about the family planning aspect with your doctors. I've also set up a consult with a High Risk OB at the University of Maryland Hopsital to make sure I have all the facts and the right information. I'd be happy to pass on more information if I find out anything different from what my current OB has told me.....
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Hi Kjoyn,
Thanks for your post. I've not really been told a lot by medics about planning a family. I go to see a heamotologist on 20th August and so I am going to ask lots of questions then as well - I will let you know how I get on. I am worried about all the injections too - does it mean that you have to be on the injections whilst you are trying for a baby too - it's a bit confusing. Congratulations on the birth of your baby girl. You have certainly been through the Mill having a PE after birth, as if giving birth wasn't hard enough right! Do you know if there are any risks associated with having these injections whilst pregnant - my friend fractured her knee and was told to have injections whilst she was pregnant, but she didn't do them. Her baby is fine and so is she, but I do not want to risk another PE or any harm to the baby so I guess I have to weigh up the pros and cons - any info you have will be welcomly received - as an informed decision is always the best - I will pass on any info I get too x x x x
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Hey DawnUK, I don't have to take the warfarin anymore. I took it for 6 months after the PE, but I have no other risk factors at this moment, unless I get pregnant again. I would guess you would have to go on the injections while you're trying to get pregnant, since warfarin is a NO NO for a developing fetus. Personally, I HATED the injections. I found them VERY painful when I had them (of course, I had to get them in my stomach and I had just given birth via C-Section). My husband had to learn to give them to me (he's an angel!), and he gave them to me every morning at 5am before he left for work and every evening at 5pm when he got home. Love him! I dread those injections to the point that I WOULD probably consider not taking them and risking another PE while pregnant (dumb I know, but I would). However, my OBGYN said he refused to treat me if I wouldn't take it, and I'd probably find it hard to find a OB here that would agree to treat me without the medication.....so, I'm having a preconception consultation with a high risk pregnancy specialist in 2 weeks and I plan on asking her A LOT of questions!!! I'll add you to my friends list and we can chat after we have more information. This is all very confusing, especially since one doctor says one thing, another say something else.....YOU know!
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Hi DawnUK,
I am so so sad to read ur post and see that you have been so poorly treacted by the doctors here in the UK. That is so unfair that they dismissed your anxiety and worries like that! Undoubtedly, having a PE is very serious and I do think that doctor probably had no understanding about the severity of the condition. I too, have found that some doctors really understand the condition, whereas others have no clue. I went to see a different doctor last week, who basically told me to get on with it and stop moaning - whereas my other doctor completely understands how i am feeling and is expecting me to feel anxious, upset and a little depressed for several months to come...and im already four months in to my recovery period. A specialist in PE's actually told me that UK doctors spend very little time about thrombosis, hence your doctors ignorance. The more knowledgeable doctors on this condition have most probably taken time to understand the condition. Everything about a PE is very frightening, and I can sympathise with every emotion you are feeling. I am frightened, anxious, worried, but I also feel incredibly lucky to be alive. So many doctors have told me that realistically I should not be here today, which is hard to swallow, but it makes me realise quite how lucky i am and how strong i have become as a person! As i have said previously, i do feel that this illness is very isolating! i find it hard because no one close to me truely understands how i feel although they have all been absolutely fantastic! so it is so nice to come on here and see that i am not alone - and how i am feeling is completely normal! hope u can find some confort in this too xxx
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