Post pulmonary embolism problems

I left my PCP several months after my clots. He was the doctor who oversaw me at the hospital when I was sent for acute care rehab after my surgery. During the two weeks I had symptoms and complaints that something was wrong. The day before I was discharged, my leg was very swollen. I had been asking for pain medicine for my leg for a few days prior. I was told the day before discharge that they would do a Doppler the following day, but instead, I was discharged and told that it wasn't red or hot. After the clots, I was just so thankful for being alive that things didn't hit me. It was through the weeks later, seeing 14 other doctors while hospitalized, telling me that my symptoms were those if dvts and PEs. You continued seeing him for a while, and finally couldn't do it anymore. I no longer trusted him. I had to stay with him for as long as I did bc workers Comp doesn't let you change a doctor once you pick one. So, I haven't found one again. My cardiologist, pulmonologist, hematologist, and psychiatrist have all taken part of my care. I feel it is so broken bc they don't work as a team. I know it would be much better to have a PCP to take care of everything, but I haven't found anyone yet. I think I'm afraid to have to start new. I avoid going to the doctor bc it's so disappointing when you don't get answers or get conflicting diagnosis. I'm just overwhelmed with the entire thing. I will begin to focus on finding a good PCP. And yes, it is a "we" bc the entire family goes through everything with me. They may not feel my pain, but they see what it does and it hurts them.

That sounds like you need to get things under your control. My PCP and the specialists I saw all worked 'hand in glove'. Maybe that's why I am getting better?

I would seriously consider finding a PCP and let the PCP coordinate the specialists. Further, take your wife with you because she is going to need as much information as you, and she will have her unique observations to share.

Hi! Two years ago, after having my daughter via C-section I ended up in the ICU with a massive PE. Both my lungs were covered in clots, I had to get an emergency PTE done, just so that i can breath better. I still needed extra oxygen while in the ICU until my lungs recovered. Due to the PE, i had some damage to my heart, which was able to restore itself. I was on blood thinners for close to a year. I am noticing that my memory is pretty bad, along with my speech. Its hard for me to pounce words. Or say the incorrect word, from what i was thinking in my head.

Does anyone have the issues?

I had a massive PE two years ago. Both my lungs were covered in clots, I ended up having a PTE to remove some of them from my lungs. My heart was able to store itself, and I was one blood thinners for almost a year.

My doc's think it was the hormones from being pregnant then having a c-section. I had my daughter on the 3 and by the 15, i was in the ICU.

Present day, I have to use an inhaler when needed, but almost to my normal self.

I have noticed that my memory is pretty bad. Could it be because my brain was not getting enough oxygen? My symptoms stated on a Thursday, was in the ICU by Sunday. My speech is bad too. It is hard to pronounce words that are a little tricky.

Can anyone relate? If so, what have you done to help with these side effects?

Welcome, @mbalcala. I'm tagging fellow members @agbrogers @mark_fugate @calygirl84 @pattymac who have experiences with pulmonary embolisms (PE) and who may have similar experiences to relate.

I also wonder if part of your cognitive and brain issues may be related to post ICU syndrome. Have you heard of PICS before?

I encourage you to read some of the discussions in the Intensive Care (ICU) group here https://connect.mayoclinic.org/group/intensive-care-icu/

In particular, I suggest starting to read the messages posted in this discussion related to pregnancy, c-section and ICU experiences https://connect.mayoclinic.org/comment/690337/

I am 73 and had bilateral pulmonary embolism. A clot in each lung! I was hospitalized for 3 days and told by the Hospitalists that I would be discharged and continue on Xarelto. I started taking it in January and other than some frequent bruising, I did fine. I just requested a refill and found out I am in the donut hole with my insurance and Medicare. Due to the high cost of Xarelto I switched to Warfarin and was set up with home testing. My INR hit 2.3 which my clinic said is good. I feel LOUSY though-fatigue, nausea, headache, and very easy bruising. I feel short of breath but oxygen is always 91 or 92. I can hike and exercise without getting real short of breath. I do drink 2 or 3 beers a day with Dr. Approval. No bleeding. Anybody try Warfarin and feel as bad as I do?

Hi @jwb1948, you'll notice that I moved your question about bilateral pulmonary embolism and feeling lousy on Warfarin to this existing discussion:

- Post pulmonary embolism problems: https://connect.mayoclinic.org/discussion/post-pulmonary-embolism-problems/

I did this so you can read through the previous helpful posts and connect with members like @agbrogers @mark_fugate @mbalcala and others.

You may also be interested in this related discussion that @thankful started about warfarin:

- New to Warfarin. Any helpful advice?: https://connect.mayoclinic.org/discussion/new-to-warfarin-any-helpful-advise/

JWB, if you're not tolerating warfarin well, might there be another alternative to Xarelto? Or might your pulmonologist make a case to your insurance to return to Xarelto?

My insurance does pay for the Warfarin but I end up in the donut hole because the Warfarin is a tier one drug that is very costly. I have not seen a Pulmonologist because my primary doctor says my PE is not serious enough to warrant seeing one. I asked the blood clinic guy to look at my medical report regarding the clots and he said they were significant in size.
I like to have a couple of beers every day. I am trying to determine if alcohol might be causing the nausea and general fatigue I am experiencing.
Thanks for your interest and suggestions. Jim

@colleenyoung, @jwb1948 Update on my heart clot and use of Warfarin. Being between OR and AZ made it difficult last year, but between labs in both areas I was able to get my Warfarin dose stabilized. It took far longer than I thought it would and I did have some umpleasant systoms especially when they were on the higher end of what they were shooting for. I was on Warfarin probably 5 1/2 months and my Cardiologist in Tucson had me have another ECHO, but because in was in his office and not a hospital setting they weren't able to use contrast. It has always seemed like when I have had my ECHO's in OR they always used contrast and it was in a hospital setting.
After the Dr. reviewed the ECHO he said he didn't believe I had a clot! What do you do with that? Anyway he scheduled a heart MRI (he calls this the gold standard) but it was a month and a half out so I stayed on Warfarin until then. The heart MRI verified no clot. I went off Warfarin literally the next day. So, the question is whether I had one or not? My Cardiologist in OR told me in person that I had one and he believes the Warfarin got rid of it. Wereas my AZ Dr never really felt I had a clot. I had several dear friends praying for me and I'm believing that God took that clot and threw it as far as the East is to the West! I'm doing very well and back to eating healthy and exercising regularly. We are officially snowbirds now and head back to AZ in December till late spring. Jim@thankful