Pulmonary Embolism Support Group
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 and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
Hubby has been in the hospital for 38 days now after having 2/3 of his pancreas removed due to renal cell carcinoma. He has suffered through 2 abscesses/infections and is now sporting 2 drains, he's had a small TIA, and now a DVT that has ultimately lead to a PE. Having gone through the PE thing on 5 different occasions myself and being a nurse, I vehemently advocate for blood clot prevention and awareness, reminding everyone of the dangers of DVT's after surgeries, inactivity, birth control and many other causes. I am the virtual broken record. With that said you can bet I am very adamant about making sure hubby's compression stockings were always on, and he walked as often as possible. As a nurse who has gone through this I get so frustrated at the lackadaisical manner to which some nurses and doctors look at the real risk of developing DVT's and PE's. Yes in spite of what I tried to do to prevent the DVT he got one anyway, but it could have stopped there. When hubby complained that his calf hurt I looked at it and realized his calf was angry red and swollen so I called his nurse. She waited about 2 hours before calling the doctor who eventually ordered a ultrasound and confirmed my fear of a DVT. To the doctors credit he ordered him started on lovenox injections instead of the heparin. Fast forward 5-6 hours and now hubby is short of breath, is de-saturating on 2L of O2, running around 80% says he can get air and just want to sleep. Even though this isn't my hospital I told the nurse to initiate the rapid response which she did. RRT showed up and assessed him the same as i did, possible PE. The doctor then came in and in a real snotty voice stated FINE I'll order a CT scan but they aren't going to find anything, just because you've had a PE doesn't mean your hubby is going to get one. Yes I wend down with hubby to CT and cringed and cried as I spotted each blood clot in his lungs. I so wanted to call that arrogant doctor and scream at him "I TOLD YOU". After we got back to the room is when I told them to call the doctor and tell him I wanted hubby kept on telemetry and monitored, that's when i found out the lovenox that has been ordered had not even been given. The nurse felt it could wait until his regular 9 PM meds. I guess what my rant is basically all about is please please be your loved ones advocates, stand up for what you feel is right. Whats it going to hurt if your wrong. Don't be afraid to go toe to toe with even the doctor, trust your gut feeling. My husbands hospital stay has been nothing but a nightmare and i am truly fortunate that I am a health care professional, and even with that I am terrified out of my mind half the time. I can't even imagine what it is like for those of you who have no real working knowledge of what should be done. I know you trust your doctors and nurses to be straight foreword and honest with you and to take you seriously, and when they aren't its a betrayal that is mind boggling. For this I am so very sorry. We have way to much on our minds without having to take a crash course in medicine.
Peace be with you
Ferr
Peace be with you
Ferr
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
I have to echo everything that you've said about really advocating for yourself and not being afraid to piss off the doctors. I had surgery in 2011 to deal with a uterine fibroid. Afterwards, there seemed to be a miscommunication about restarting Lovenox... as in there was no Lovenox and no one at the hospital seemed to know anything about it.
I started pitching a fit. I rang the nurse repeatedly, who kept calling the on-call doctor. I started calling all my doctors (even those not affiliated with the hospital) to try to find someone who could grease some wheels and get the medication prescribed. My husband also continued to hassle the poor nurse (who was doing the best she could, actually, I don't blame her). The on-call doctor finally showed up after about four hours of this and said, in a very bored tone, "Why do you think you need this medication?"
Gritting my teeth, I explained that I'd had three clotting incidents, the last being unprovoked multiple bilateral PEs, I'd had surgery on my pelvic area and was bedridden, and had been off thinners for about 24 hours at that point. He didn't say much after that, but I had my shot within 20 minutes.
So, I highly advocate being the "bad" patient if you need to. I never saw those docs in the hospital again, so I don't care if I made their lives difficult for a few hours. I made it out of surgery without more clots, and that's a reward I get to enjoy every day.
Sending lots of positive thoughts your way, Ferr!
And like TNT said, don't be afraid to be a "bad" pt. When my mom was in her late 70's, she refused to be discharged post emergency abdominal surgery, after just one day in the hospital. They let her stay one more day which is all she needed to get some of her strength back.
Peace to you too, Ferr.
When I was in the hospital with my PE, I was having blood drawn like twice a day for various reasons, mostly to make sure my blood counts were high enough and then for my INR. I remember when I was out of the ICU and in the cardiac unit, this nurse told me that they'd be coming in to draw my blood around 9:00 or 10:00pm so I was just trying to stay awake so they'd not have to wake me to do the draw. So 10:00 went by, 11:00 went by... finally at midnight I called that nurse and said no one has been in here to take my blood. She insisted that it was drawn and said I must just not remember or I was asleep when it happened. I said I've been forcing myself to stay awake for the last 3 hours and even if I had fallen asleep, I've not had a sound night of sleep since 1968, so trust me, I'd know if someone were POKING A NEEDLE INTO THE TOP OF MY HAND. She huffed and said she'd check on it. Like 10 minutes later, a tech comes in and draws blood and he said for some reason someone had entered into the computer that they had drawn my blood. I said, you know that kind of mistake could kill someone, right? He didn't say anything, because you know, it's easy to blow off a sick person on a ward where EVERYONE is constantly complaining. I think they put every patient into the pain in the ass bucket right off the bat. Some patients are pain in the asses, but so what. You still have to do no harm.
Ever since my stay in the hospital with my PE, I let nothing slide. If that makes me a bitch, well, bitches get shit done so there's that.
So very sorry to hear of all the tribulations you have had. My heart goes out to you. Your husband is very lucky to have you by his side.
There are many caring and capable medical professionals. That said, there are also many arrogant, and uncaring ones. Never think for a moment that anyone knows more about your condition than yourself. Know one knows your body better than you. Never be afraid to stand up for what you suspect to be true. It could mean the difference between life, and death. Life is too fragile!
I sincerely hope your husband does well from here on, and recuperates very rapidly. I also hope the love and compassion from the caring individuals here help you through your ordeal.