Just diagnosed with PE Today and terrified

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Got a clot on my lung and have to have heparin injections for 2 weeks and then tablets they also want to scan my pelvis and heart I'm so scared

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  • Posted

    Hi Daisy

    I was diagnosed in November with large bilateral pe's and had pelvis and heart scans too, they want to check your heart as often due to the clots it causes right heart strain, I also have this and am on medication.

    Please be reassured that they have found the clot and you are now on the right treatment and in the right place., I know that is it a really scary time and with all the tests etc, but we have all been in the same position and will happily answer any questions you will have.

    Take care x

     

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    • Posted

      Thank you Debbie I think I'm just a bit stunned and frightened it will just pop and I will drop dead! X

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    • Posted

      Hi Daisy

      I was originally in hospital for just over 2 weeks and then back in a week after being discharged with pnumonia for another week!

      It takes your body a long time to get over and everyone is different. When i first came out I could barley walk to the end of our drive, I would get really breathless, however over time you do improve and do a little bit more each day / week.  Just listen to your body and what your doctors tell you.

      Unfortnately I have been diagnosed with Pulmonary Hypertension as all my clots have not dispersed properly and now have alot of scarring, I am on a waiting list for surgery at Papworth Hospital.

      It is a frightening experience and and I know that with me and alot of others your anxiety levels go up and you become very aware of everything your body does.

      The best thing to do is take note of what your doctor tells you and don't try and push yourself too hard, take it day by day and try not to be too hard on yourself.

      xx

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    • Posted

      Debby, you are doing exactly what you need to do and you sound as if you have it all covered.  Are you taking anything for anxiety?  They, and I , thought that I had Pulmonary Hypertension but I do not so far and am so sorry that you have it. Papworth Hospital, is it in England?  How long would you have to wait?  I am not used to that type of care so I need you to tell me.  All I can say is to be sure and get your doctor to give you something for anxiety because when I thought I had it my anxiety level moved up about 100%. I am glad that you are on the list to have the surgery/ How long did you have the PEs before you began treatment?  I have a friend who has it, she went to the ER for 3 times before they diagnosed her clots and by then it had done it's damage. And she lives in California at 7,000 feet so it makes it so hard to breath and she is on oxygen. She is actually too frail for the surgery and that scares me for her. Please rest and let your lungs heal as much as they can. I will add your name to my church's prayer list. I am Anglican ( Church of England) and we call out names ever Sunday.

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    • Posted

      Hi Marie

      Papworth Hospital in near Cambridge in England and is the only hospital in the UK that does this surgery as it is highly specialised. I will be due for the surgery around August / September.

      I went undiagnosed for about 4 weeks before I was finally diagnosed with bilateral large pe's in November 2016, but after speaking with the specialists at Papworth, I could have been suffering with symptoms for about 4 years, as I had been feeling not right for about this time and had every test done imagianable that all came back normal.

      I am not currenlly taking anything and at the moment am coping without anything, but I will certainly mention this to my gp.

      I am so sorry for your friend, I am sure that she is on the correct medication and maybe when she gets stronger she will be offered the chance to have the surgery.

      Take care x

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    • Posted

      Hi I'm going out for a meal with friends tomorrow evening I would usually have a couple of glasses of wine . I have seen mixed things about alcohol what do you think ? X

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  • Posted

    Its normal.al to be scared. Try to relax. I was terrified when i had mine in November. Ive been off blood thinners fpr a little over a month and scared ill get another one. You can ask for an anti anxiety med to help.
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    • Posted

      Samantha, I had mine in Nov and will be on warafin for a year. I take am anti anxiety drug every day. and it helps. I do not know of any other medical problem that raises the anxiety level as much as these clots do!

       

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    • Posted

      My pe was 2014 and im on warfarin.  My anxiety hasnt gone down but i domhave the ability to walk more and breathe better.   I still have to take anti anxiety meds, what did they give you to help?
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  • Posted

    Some sound advice there from debby and although it's early days daisy you're already on the right track with the medication you're on. From what I remember they scan everything as a precaution. This sounds difficult I know but please try not to worry and stress yourself out and take things easy as I'm sure the doctors have already told you. Just do everything they ask you to do and if you have any questions ask the experts cos trust me they've heard them all. Well maybe not mine when I asked them if I was ok to have a hot bath. smile Yes they laughed and of course i was. Asking questions rather than dwell on things really helped me ease my anxiety over it all. Take notice of your body and take positives from the many helpful people on here who are always willing to offer support as I found when I headed here after my PE discovery.

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  • Posted

    I got a PE in the ventricle near my lung after a stomach surgery May 9, ended up back in hospital on May 18, beacuse of shortness of breath, dizzy and light headed.  Went to the ER to find put about the clot.  I got heparin thru the IV and some injections.  They send me home May 21 on xarelto 15 mg 2x per day.  I have been scared as well.  Still not feeling great .

    I go back to the cardiologist this week.  I cant wait , so I know what is normal.

    I had a cat scan with dye which is how thay found it.  Nothing to be scare of  

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  • Posted

    I know you are sweetie.  I know you are. When I had my 2 PEs and one in my leg I was so dumb and did not know the first thing about it but I have learned fast.  Did they keep you in the hosptial at all or are you getting the injections at home?  I had all of those scans when I was in the hospital and I am betting that yours will turn out fine!  Let us know as soon as you know something. Listen, in my hospital when anyone comes in with a clot that start those injections and give you your too. It takes a few day, maybe 4 or 5, for the heparin to get the clots ready to receive the warafin.  THink that the spelling is wrong!  But anyway, my hospital immediately puts all of their pulmonary embolism patients on something for anxiety. In my case it was Zanex. And it kept me from being so scared and upset when I found out how dangerous clots were and I still take one tablet a day if I am anxious. It also helps keep your blood pressure down. You might want to mention this to your doctors.

     

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    • Posted

      Yes, I am on  on xarelto 15 mg 2x per day for 2 1/2 weeks then will start on 20 mg 1x per day this week for 6 mnths they say.  The hopital had send me home with that prescription

      I will know more when i go to the cardiologist on Wed.

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    • Posted

      Samantha, yes I am and will be for 1 year. Then I will go off until it clears my system and have the genetic test to see if I carry the gene for this.  My mother had a blood clot with her first child and my sister was 4 weeks old when she and my mom got to come home from the hosptial. I had 2 PEs and one DVT in my groin. I am 73, owned a hiking company for 25 years and have walked the world and I STILL got one the last day of October, 2016. I can't believe that i did not have one years earlier when I was doing 5 or 6 flights from the US to Europe or the South Pacific 5 or 6 times a year. I am so glad that I did not have one 4 months earlier when I was in Iceland with my grandson. That would have been awful for him to have to deal with and I probably would have died.  I am so grateful for every day but my emotions are still off the chart!  If someone steps on a roach and I see it I will cry!!  Really!  But this is part of it and I accept it. I am 73 and have had a great life, am a strong Christian but am not ready to die. I still have one grandson to take to Iceland in 2018 and then I will be ready.

       

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