Pulmonary Embolism Support Group

Ladystarla--sounds like your doctor has no idea what's going on! Have you seen a cardiologist? Maybe you should get another opinion. It seems outrageous that you're back to such a heavy schedule so soon.

My blood clots and infarctions are in my lungs, so there is no reason why I should see a cardiologist. My doctor doesn't seem worried about anything. I saw him once after getting out of the hospital and he told me to come back in 3 months unless I got worse. I get my INR checked every 2 weeks now, so I figure it can't be that bad. I'd like to see a specialist, but I doubt that my doctor would give me the necessary approval.

Ladystarla, who's your HMO coverage with? I'm getting sort of the same treatment. They don't seem to take my pain, shortness of breath, fatigue seriously. They haven't even offered a specialist and just released me from the hospital 2 and half weeks ago with only the acc unit calling me every three days and doing labs every three days.Tomorrow will be my first doctor visit in 3 weeks since the hospital! my levels are no where near controlled..either high 4.2 or low 1.9. I think you should demand to be referred to a pulmonologist or a hematologist and get a second or even a third opinion. i don't think you should be back to full time parenting, school and work so soon either. I know i need to be more aggressive and proactive about making them listen too. hugz for you

Good Grief! I am 30 days post PE and MY HUSBAND isn't even allowed to leave me to go to work yet, not me at all...I was in the doctor's office for a checkup 7 days after discharge from hosp- and limited to bathroom privileges only, all on oxygen full time.
Now one month later I'm allowed to walk no more than 25 feet at a time, and I can do without my oxygen. Today I went to church twice and had to take a 2 hour nap in between. The fatigue and pain are very debilitating. Ya'll need to call another doctor, this is way too much for you to do so soon. JMHO and my docs.

Maybe my situation wasn't/isn't as serious as yours. I'm gonna see how the week goes and go from there. I never needed oxygen at home, my pulsox was 93 at the lowest, and was up to 98/99 when I saw my doctor a week ago. If this week seems too much, I will schedule an appt. with my doctor. I actually spent most of today sleeping--resting for the busy week ahead. Thanks everyone for your concern. I guess the doctors think everything is fine since my INR is theraputic--last time I was checked it was 3.5--should be a little better since my dosage was adjusted.

I guess every situation is different. I never needed oxygen either, my pulseoxy was 98% today and 90's in the hospital. But the pain is pretty dehabilitating. They gave me pain patches today which i hope will help.
i think ladystarla you definitely need to take it easy and if it's too much for you go back to the doctor or find a different one who understands the recovery for PE's can take a long time. You can't usually just resume normal life like nothing happened. Take care of yourself!

My doc just gave me tylenol #3's. Only for at night, regular tylenol during the day...which we all know doesn't do anything for pain that's higher than a 7. My doc just doesn't believe that I'm in pain. Oh well, I'm gonna just tough it out. not much else I can do but stay positive, try not to focus on the pain, but on the fact that I'm still alive :)

i'm super pain tolerant...i had natural child birth with both my girls, the second one at home in a bathroom by myself...kidney stones with no pain meds ect. This PE pain hasn't been one i could live with. I really think you shouldn't have to either. Tylenol does nothing that's for sure. I think you need a new doctor or second opinion or someone who will listen to your needs. You shouldn't have to live with that level of pain...it's not helpful to your recovery and healing process.
do stay positive and try to take things slow and know that we're sending our good thoughts and energy your way.

I have been unemployed during my PEs, but after seeing a Hematologist last week, she informed me that due to the number of embolisms and their size, combined with the fact that I am Protein C and Protein S deficient, I had better apply for SSDI. She even gave me a paper to get a handicapped parking sticker. She says it will be a long road to recovery. I just had an echo and another CAT scan done last week. They're trying to rule out cardiac damage and secondary pulmonary hypertension. I had to "walk" up/down her corridor at her office twice, all while wearing a pulse oximeter. My O2 went from 98% to 88% within 10 seconds and my pulse skyrocketed up to 120 bpm! I am a nurse, but no amount of professional training could've prepared me for this recovery. Oh, my PEs were supposedly caused by my hernia repair that I underwent in July of this year, although they found no evidence of any DVT in my legs/thighs. Just thought I'd share my experience to date. Good luck to all.

Tomorrow is my first day back to work! Excitement! Congratulations to all of you in your progress with recovery! =)