Just seen your posting.
its four years since mine, exactly six weeks after an op.
warfarin for life now.
the tiredness is just something i pt up with. Cant do what i used to, i was 62 and fairly fit. Finding it difficult to mentally come to terms with life now but make sure i walk every day, even a short distance does help. Beware Colds and flu as they take longer to work off now.
would,love to know how others cope, is it possible to get back to normal life?
HI Ann, I'm as puzzled as everyone else here. Is the extreme tirdness due to the embolism or that we take Sintron_Warferan?' I'm lucky as my students come to my home a few times
So I'm kept busy if not I'd go crazy with depression and frustration at the lack of care and information from doctors here in Spain. IT's great that we can learn from each other on this site.
Hi. I am so glad I found this site. On March 8th I had an EKOS procedure done for a saddle pulmonary embolism with several other clots located in both lungs. I was in ICU for three days and released from the hospital after one more day. The hospital doctors said I could resume a normal schedule right away. The following week I went back to work as a secretary and put in a fun 9 hour day. Then I went home and slept about 18 hours straight and went to my personal physician who wrote me a note to be off work until April 16! I am 59 years old and considered myself to be reasonably active. Now I have such low energy I can't make it through a day at home, doing nothing, without a nap! Is there anyone out there with similar issues who'd also like to share and "talk" to? I'm aware of nearly every breath and chest twinge, etc. My dr. says to give myself a break because I almost died. But if I sit around all day, I'm setting myself up for more clots, right? This is making me a little crazy? Anyone else feel like this???
Hi Estin. I'm 5 months post embolism in both lungs and now that terrible tiredbess has gone and I feel strong again. Keep active and rest in between walks.
Good luck.
I went to the ER on March 22nd and they discovered I had mutiple blood clots in both my lungs. I've been placed on blood thinners and was doing well the first week. But now I feel, like everyone else, tired all the time. I'm only 41 yrs old and not used to needing a nap. Like a few of you, I'm fine while I'm working, but as soon as I sit down to kick back, I can get extremely tired and can't keep my eyes open. I'm glad I found this blog, I thought I was going insane.
Hi Scribbles, Thank you for your reply. It's now about 7 weeks since my saddle PE with multiple PEs throughout both lobes and my EKOS procedure. I'm back at work full time. Last week I felt better than I do this week, so I'm thinking of requesting being put on 6 hour days and working my way back up to 9 hour days. Every afternoon between 2 and 3 I can barely function and make stupid mistakes. I am thinking of looking into the pulmonary therapy that was mentioned some place in this thread. I'll mention that to my doc when I see him to get the note for restricted hours. I an so happy you are feeling strong again and hope that by taking one step back for a week or so I'll be there with you soon! Maybe if my hours get approved I'll use the time at home to grab a quick nap then take my dog for a walk to help build up my stamina. Do you think that would help?
It's been 1 month since I was diagnosed with PE. I completely overhauled my diet, no sugar, no red meat, no pork, no dairy, and no processed and fried food. I'm beginning to feel much better. Not tired all the time anymore. No longer depressed. I think my body is healing nicely.
I travel for work occasionally, so I'm stressed out about the possibility of flying from coast to coast. Has anyone flown post PE? I'm sure someone has, but I would like to know your experience.
Thank you.
One thing I should've added in my previous post: I used to get a lot of periodic chest cramps/pains similar to what sent me to the ER. Those are now more and more less frequent.
What blood thinner are you on? Both Xarelto and Eliquis caused me awful fatigue
I'm taking Pradaxa. Maybe it just depends on how our bodies respond to healing. I wouldn't think that the meds have anything to do with it.
Have you tried walking as exercise? That's would I began doing a week afterward. Nothing aggressive, just leisurely walks. I also changed my eating and went to a very clean eating pattern.
Sorry that you are still are suffering. Hope it gets better.
Ich wurde im März dieses Jahres mit Eliquis behandelt. Ich stellte fest, dass ich tagsüber trotz geringer körperlicher Aktivität sehr müde wurde. Ich habe es geschafft, allmählich mehr zu tun; letzte Woche habe ich zweimal über drei Meilen gewandert, und zum Glück war ich danach nicht allzu müde. Ich versuche, wann immer ich kann, zu gehen, und kann jetzt bügeln, ohne nach sechs Gegenständen eine Pause machen zu müssen, was eine große Verbesserung darstellt. Ich habe immer noch Brustschmerzen, aber ich versuche, mir keine Sorgen zu machen, da dies laut meinem Hausarzt und Hämatologen normal sei. Im August werde ich wieder den Lungenfacharzt aufsuchen, aber ich wurde vom Hämatologen entlassen und muss keine Bluttests mehr machen, wie ich es bei Warfarin hatte. Ich werde es lebenslang einnehmen, da dies mein vierter Gerinnsel war (zweimal in den Lungen), und diesmal könnte es nicht von einem tiefen Beinvenenthrombose (DVT) stammen! Ich bin immer noch anfällig für Brustinfektionen (ich habe chronische Bronchitis), hatte eine Woche nach der Diagnose der Gerinnsel eine, die einen Monat lang anhielt, also eine schwierige Zeit von März bis April. Mir wurde gesagt, dass sich meine Energielevel etwa drei Monate lang nicht wieder erholen würden, obwohl die Gerinnsel relativ früher als beim letzten Mal entdeckt wurden.
It has been reassuring reading these posts, thank you. I am 53 and about 18 months ago completed The Yorkshire 3 Peaks, National Three Peaks and 3 countries in 3 days and now am out of breath climbing the stairs! My sleep is all over the place but my biggest issue is getting my head around nearly not being around any more. Any ideas on that one, folks?
\u003cp\u003eIn Anlehnung an meinen Beitrag habe ich weitere Blutuntersuchungen durchführen lassen und festgestellt, dass ich an Folsäuremangel leide! Der Wert sollte bei 5-10 liegen, meiner liegt bei 1,5. Ich werde nun drei Monate lang eine weitere Medikation einnehmen und anschließend eine weitere Blutuntersuchung machen. Anscheinend mindert dieser Mangel die Energielevel. Ich vertrage viele Früchte und Gemüse nicht, daher werde ich prüfen, was ich meiner ohnehin schon eingeschränkten Ernährung sonst noch hinzufügen kann.\u0026#160;\u0026#160;\u003c/p\u003e
I’m so glad I can read sites like this. I’m 7 months into recovery from DVT in both legs that led to multiple PE’s. They gave me a 1 in 3 chance of not coming out of hospital. I’m ‘just’ 67 and thought I was bullet proof. It took a few months for the gravity of my ‘scare’ to sink in. I think I’ve seen 18 doctor/specialists in the past 7 months. Many of them have reinforced how lucky I am. (This is starting to annoy me somewhat).
My big issue now is the fatigue. Some days I’m ‘almost’ normal but most of the time I can’t get out of my own way. I can sleep anywhere anytime. (I’m on Elequis). My legs are always tired. I had fluid on the lungs and pleuricy which has left scaring. I also had some internal bleeding and an infection in the week after being discharge for hospital requiring me to go back to hospital.
I also struggle mentally. I have difficulty relating to others the ‘gravity’ of my experience. I’m not after sympathy but some empathy would be nice. My wife has been great. A real gold brick. But others just shrug their shoulders and don’t ‘get it’.
Anyway it’s reassuring to know I’m not alone and not just being paranoid.
thanks
just 67 here too. same. dvt,p.e.s. hubby is stronghold. meds are awful, cant seem to get normal life back. medical prof have been useless, just basically get on with it. seems to be no support for this type of problem. alone, no, paranoid,no. unwell, yes. i comsider this as being a life altering event for me. any helpful hints would be gratefully received.
Yesterday I went to my GP. Even thought it’s ‘only’ 7 months since my DVT/PE he had forgotten and thought it was 2 years ago!! Now I know I’m not special but it doesn’t give you much confidence in GPs.
I have a specialist who is excellent but I need a referral and it costs big time. The GP has no idea and doesn’t believe chronic fatigue and and breathlessness is an issue. He doubts it should even take 6 months to recover. After many years with the same GP I’m now on the lookout for a new one.
Is PE so ‘uncommon’ that even GP’s don’t have a clue about it?
All I can say is that it’s a roller coaster ride. Some good days and some bad days. The longer you go the more good days there are.
My GP said the same thing. “a few weeks and you’ll be fine”. My hematologist laughed and said I had a long road ahead, maybe years. He was right. GPs aren’t there to be experts on everything, they’re there to know a little bit about everything.
So what are the things that your hematologist has done that you find have helped? Mine has suggested someone to help me cope mentally.
My big issues now are my fatigue, breathlessness and aching legs. I can sit or stand for long and find I’m spending way toooo much time on the bed.
Getting past it mentally is big. That was very difficult…The best thing physically I found was switching blood thinners. I started on Xarelto and that made me feel awful (fatigue, joint pain, etc).
Yes I’ve already been switched from Xarelto to Eliquis. I cant tell the difference!
If I could get my legs right then I think I can cope with the rest.