I understand it’s different for everyone, but I wouldn’t mind hearing a rough ballpark idea or people’s own experiences. I was diagnosed with multiple PEs in March, but I had the symptoms for years before and I am thinking because they were left undiagnosed for so long my symptoms now might last longer. The pain was unbearable at the beginning of treatment but since I have changed to tinzaparin it is a lot better. But twice a month when ovulating and just before my period the pain, my heart rate and my breathing get worse. Is this going to go on for years? Miraculously I have no serious damage to my lungs or heart so I am hoping its not going to be for life.
Well, I will try and give you an answer....but something like PEs can vary enormously in severity.
Reading through respondents on here seems to show a roughly 50/50 split between those with a recovery within 3-6 months and those with 1 year or more recovery and/or ongoing symptoms.
I seem to fall firmly in the latter, but it's not all bad news as you can find you are still improving some 2 years+ in.
I too had problems long before diagnosis and had had shortness of breath & coughing up blood ascribed to chest infections. I ended up diagnosed with many many clots in both lungs. Sounds bad, but the silver lining is: I suspect my breathing is now significantly better than a year or two before my PE diagnosis. (Just some possible late onset asthma to spoil the party).
I suspect you may not see huge leaps in improvement, but will realise some time in the future, that many of the issues have faded away.
Fingers crossed.
I am about a year and a half out, and I'm just now finally starting to feel like my old self again (more or less).
Are you from Wisconsin?
No I am from the UK. Our health service is rather lacking and I feel like I have learned more about PEs from other people’s stories and comments than from any health care professional. Did you have multiple PEs or one big one?
I had 5 clots in late 2016 and was misdiagnosed for two months. The pain was horrible. I was put on blood thinners and now they're deciding whether I should stay on them or not. I'm not getting very good answers about that. They make me feel awful. But as far as the PE goes, it took over a year for the pain to really get better, and I still have bad days here and there.
I hope you start feeling better soon and can come off the blood thinners safely. I am not a big fan of blood thinners either but I find the injections I am on now have much less side effects than the tablets and they help the symptoms a bit more. Only trouble is I have bruises everywhere I inject. When you get bruises how long do they usually last for and when should they get better? I have bashed my ankle about a week and a half ago and it is still bruised and swollen. Is that normal on blood thinners?
It's normal to have worse bruising and such. I find bruises all over and I'm not sure where they came from and they last awhile. It was never like that before 🙂