Pulmonary Embolism Support Group

Hi Kate!
I'm sorry to hear about your dad. I can honestly say I felt MUCH worse for the couple weeks following my PEs than I even did before I was diagnosed. I was completely exhausted to the point that I was literally sleeping 18 hours a day for the first few days. I also made a trip back to the ER with extreme chills and night sweats about 3 days after I was admitted. This was on a weekend, so the on-call doc told me to go to the ER. They took a ton of blood, even did blood cultures, and found absolutely nothing. This whole process has been really hard on me, but the first month, especially the first couple weeks were really horrible. I barely had the energy to eat, and I felt like I was going to pass out every time I walked more than a few feet.
My legs ached too for the first week or so, which is odd, b/c my DVT was in my pelvis, not my leg. They hurt so badly for a while my doctor gave me muscle relaxants which I only took once because they just made me more dizzy.
I hope they have your dad on lovenox shots while his warfarin stabelizes. If the do, your dad should be ok as far as danger from the PEs is concerned, they just take time to resolve.
I can't be much help with the heart damage, as I was lucky enough not to have any. I just know that my doctor told me sometimes heart damage can occur but usually resloves itself over time. Good luck!

@ Kate

I'm assuming you're in the UK (your use of 'mum' and 'bank holiday') so things will be a little different there than here in the U.S. But there are lots of people here from the UK also.

Is your dad still in the hospital? And hasn't seen a doctor for 3 days??? That seems a bit odd to me----- but we have to assume that the nurses that are looking after him are in touch with the docs?

"Getting worse" isn't the norm once a person is started on warfarin but I can't say it never happens.

It does sound as if there might be 'something else' going on (fever) and I hope they'll investigate that to the fullest. Then he has the heart problems-------

****A lot of threads seem to imply people get better pretty quickly once they have been diagnosed****

Well, that depends on what they mean by 'better'. As I said, my shortness of breath and the horrible cough went away---- right away. But am I 'better' than I was before starting warfarin? No. Could it be the side-effects of warfarin? I don't know.

Since I'm a 'lifer' I'll not know if the side effects go away. But some claim they do.

The side effects of warfarin affect a LOT of people----- and some people claim they have no side-effects.

The time frame for 'getting better' is different for everyone. Not everyone, regardless of age, feels 'good' while in treatment. But some DO----- makes for a very confounding illness with no parameters.

So you're going to get answers that go from one extreme to another which probably won't answer your question----- and for that I'm sorry. And I hope that your dad gets better soon!

thanks for the quick responses... JennerM: thanks for sharing your experience. sounds like it was really tough, but it definitiely helps to know that the exhaustion dad has is not unique, nor the sweats. He's not on lovenox, but is on heparin injections which i think may be the UK equivalent. I hope you contiue to recover... Cave76: thanks for the response. yeah, i am in the UK and yes on weekends its seems Drs dont do ward rounds - altho the nurses are in touch w them about the changes. We are going to see a Dr properly tomoro.

Just a bit of additional info: his oxygen levels are generally really good (99-100%). but his blood pressure has lowered significantly.

thanks

Sorry to hear about your dad ...

Actually I'm not sure which threads you're reading since it seems like for the vast majority of us, getting better takes weeks or months. I mean, you do usually see some significant improvement within the first week after diagnosis (for me, I was able to breath a lot better within a few days although the slight cough I had took several months to go away), but I'm not sure exactly when that part happens. Still, though, some level of exhaustion, pain, and SOB tend to linger on and on. The only guaranteed thing about PE recovery is that is ALWAYS takes longer than we want.

I would definitely be trying to press for answers on the fever, assuming it continues. I know the day I was diagnosed, I remember feeling like I was sweating like a pig the entire day. Just drenched. I think my systems were compromised and it was combining with some anxiety to make me feel horrible and wet.

At this point in PE treatment, there isn't much to do. Most of the hard part with PEs is getting diagnosed. After that, once you're on shots (and getting your INR into range), the only thing left to do is pretty much wait for your body to dissolve the clots (the meds don't do that; they only keep them from growing).

Do they have a possible cause for the clots? Recent surgery? Other medical conditions? Recent travel or long sickness? That might have some impact on the other symptoms he seems to be having.

Also, how has he taken this all mentally? The shock from this kind of thing can really throw someone for a loop--especially if he/she was always really healthy and fit beforehand--and he may be really struggling mentally with all the changes. That can definitely add to the symptoms you already mention.

Have they done an ultrasound for DVTs? If he has clots in his legs, that could be why he's having such leg pain. I do know people on here have mentioned feeling cold all the time from warfarin. I haven't had that, but I know other people have.

Keep asking lots of questions and keep an eye on him. He's lucky to have you during all this.

Just saw your follow-up note. Make sure he's staying well hydrated! It might seem really basic, but that can help with the blood pressure and with the overall feeling of being sick.

Also, try keeping his legs elevated and see if that helps with the pain.

I just saw your note about his BP too. My BP dropped significantly after my PEs. That was actually one of the things that made me think something was wrong initially. It just didn't make sense to me that surgery would drop my BP from 140/80 ish to 90/60ish. My BP has increased since diagnosis, but is still considerably lower than before my PEs. I guess that's the one bonus I got from this whole mess... now I have low-normal BP instead of high-normal!

I got worse after diagnosis. I had slight shortness of breath. After being diagnosed with a large blood clot in leg, a CT was done of lungs and I had 2 pulmonary emboli with a shower in one lung. It was after that I developed the shortness of breath, cough and "conversational dyspnea". In addition, I developed severe fatigue, dizziness and hair loss. After going off of Coumadin just 7 weeks ago, to my delight, dizziness and fatigue are gone! Hair is growing back. Unfortunately, I have a lot of on and off pain in leg along with aching in both legs. When people on this board mentioned to give it a year, I decided they were right. It took me that long to recover. I am still not totally recovered and may never be at the level I was before I became ill. But it is so much better! And JennerM, that is interesting...I also have low blood pressure now. Encourage your dad all you can and tell him it will take time.

Honestly one thing I thought that might be confusing for you when reading the discussions is to differentiate between the fact that our bodies from the time of treatment are on the road to recovery (so in that sense we are 'getting better') and how we actually feel, which quite honestly for a lot of us was actually worse after diagnosis and treatment than before. The only thing which got better on me immediately following treatment was my breathing, and that because I got clot busters in my lungs so the clots were dissolved right away. But everything else in my body felt much, much worse for weeks if not months after.

You know, one idea that comes to my mind, is that perhaps you could ask whether there is any concern that he could have arterial clots in his legs? Just because you're mentioning the pain he has there along with very cold legs, and I know those things would be symptoms, but I don't honestly know much about arterial clotting so if the doctors said they aren't suspecting that, then I hope it's with good reason. But I would think that perhaps if he's showing strain on his left heart, then that too could be from arterial clots...Personally if it were my dad I would be concerned and asking more about this damage they've seen in his left heart. It's true that what PE causes is right heart damage, because IF the PE's affect the heart (and they don't always if the clots are small), they affect the chamber which is pumping blood to the lungs, which is the right side. The left side is pumping blood out to our body, so from my (admittedly limited) knowledge, I wouldn't think that his heart damage is necessarily related to his PE.

Personally I know that my body temperature was kind of all over the place. The first time I had PE I was insanely cold all the time, I've just gotten out of the hospital again a week ago with more clots, and I'm having major sweats kind of like what you describe your dad having. I tend to think our bodies are just very mixed up after an event like this, but of course you'd want to be sure that the doctors are making sure that he doesn't have an infection prior to assuming it's nothing important. My BP also ran very, very low for months, sometimes I'd go to get my INR checked and I'd set the monitors buzzing for having it so low.

By the way, good on you for taking initiative to try to educate yourself about what your dad has going on and looking for some support. I think many family members don't think to do that, and your dad is in a situation where he does need a lot of support right now and you're in a good position to be able to advocate for him, try to push nurses and doctors to give you guys answers, and to find answers if they don't already have them. I hope that things will smooth out quickly for him and he'll be more himself soon.

Hi,

So many people feel pretty terrible for a while right after our PEs. Our bodies are a mess and I'm sure certain procedures performed, drugs and just the overall fatigue from such an event can make us feel bleh. For me, I had pain in my chest and back, which I had very little of prior to the diagnosis. I had a low grade temperature the entire time I was in the hospital with my PEs (7 days). I was very , very warm after my PEs, when I collapsed from them, and then while I was in the hospital. I kept asking nurses to turn up the AC in my room because I was so hot. Also, my Blood Pressure has been on the low end of normal ever since my PEs. I had right side heart damage and that took a while to resolve. So, personally, I think there's a lot that happens in your body when you have an event like this and it seems it would take a toll, even after diagnosis.

Hope you're taking care of yourself in all of this too.

Sorry to hear about your dad. Did you say his age?
Running six miles and having an enlarged heart seems different to me. But I'm a contractor not a medical person. Its does seem to me his irregular heartbeat may contribute to clotting.
The right heart pumps blood into the lungs ,so when the lungs are clogged with clots the right heart has to strain to force blood through them. That's why we have right heart problems. The left heart is something else.