Hi all. I'm still in the hospital... been here a month all together now, with 4 days home in between. I really want to get out of here. Please pray that all my levels and vitals reach where they need to and remain there so I can go home. Now for the details...
The original plan and everything I've read and been told by every doctor other than my main team is that you need to stay on heparin until the warfarin level reaches therapeutic range otherwise its as if you're not receiving treatment... because heparin only stays in your system about 4-6 hours and warfarin takes at least a few days to kick in. Yet Saturday they decided to stop the heparin and then start the warfarin, going against this. I still don't understand why or like that the surgery team is treating a pulmonary embolism. I'm also seeing neurology, hematology, cardiology and pulmonology... all of which agreed with original plan... and GI but that's most likely, hopefully unrelated. Yet here it is the surgery team making all the decisions and overriding the other decisions.
Saturday night, just hours after stopping heparin I started having a lot of trouble. It was a really really rough night. I was worried. It was just as bad if not worse than in the emergency room. I was coughing to catch my breath, levels were dropping even with oxygen, I could barely sleep because it was so hard to breathe. No one seemed to care. Of course whenever any doctor or nurse would look at my oxygen saturation it would be fairly normal. The primary/surgery team kept seeming to make up excuses to back up their decision to pull the heparin. I don't buy into any of it, especially when the other teams reconfirm my thoughts on this.
Well these oxygen drops went on for a few days. Prior to this I was improving and could walk to the bathroom and back without oxygen... it would drop but I could make it and put the oxygen on upon returning. I was walking the halls with oxygen on. But then Saturday night came and back to oxygen saturation dropping and needing oxygen again while just sitting in bed. They claim it has nothing to do with stopping the heparin... sorry but I call BS.
Well, look who's right. Yesterday I got put back on the heparin drip. Surprise surprise I couldn't do without it. Today I'm doing better again. I am walking the halls without oxygen!! It is still dropping but only occasionally and oxygen brings it back up. My heart rate is still way too high though. And the bad part is the only way I can walk and breathe is either hooked up to heparin iv drip or oxygen. I know I can't rush the process but it does scare me a little that I'm not there yet. And so we wait while I get heparin 24/7. Baby wipes and dry shampoo are my friend right now.
We are waiting for my INR (Warfarin levels) to get within 2-3. I was at 1.0, 1.1, 1.1, 1.4 and now 1.5. It's going slow but I really hope we can get there soon. When we get there then its no more heparin iv. I just also hope that by that time I can breathe on my own sitting and walking because I really don't want to be sent home with oxygen which they've already been talking about.
So I'll add a little info I never included yet. Heparin is a blood thinner and warfarin is an anticoagulant aka pretty much lessens your risk of blood clotting. This means you have to be extra careful not to bump, bruise or bleed. I also need to maintain a very consistent level of anything containing vitamin K aka green vegetables. I am a big fan of greens and green drinks so eliminating them all together for 6 months as first suggested was not an option for me. I just have to make sure I consume the same every single day. Vitamin K ups the clotting factor so sometimes more warfarin is needed. I also need to eliminate a lot of supplements, some of which I regularly take like flax seed/fish oil, ginger, etc. I remember this medication always listed on just about any other medication I took and always thought it would stink to be on that... and here I am. It is what it is I guess.
Lastly to finally answer how I got this. Simplest answer is its a risk after surgery. However, there is a chance it could have been happening for a while now, developing small clots and this just put it over the edge, especially since I've had breathing trouble for years now. In that regard I somewhat hope that is the case in that 6 months from now should mean I will be able to breathe better than I have in 3 years. Another possibility is it happened from/after plasmapheresis as there is a risk of clotting/bleeding as well as air getting in when pulling the tube out. Lastly, there are several genetic and autoimmune conditions which basically make you prone to PE and you have to be on medication for it all your life. Please pray its not that last one, especially since with one autoimmune condition, or in my case two, you're much more likely to get more and more autoimmune conditions.
I was going to type some thoughts to ponder but at this point this post is pretty long and I'm pretty tired and the biggest reason... I forgot what they were. Perhaps another day. Please pray my INR gets within 2-3, my oxygen saturation stays above 95%, my heart rate stays around 60 and of course that my myasthenia stays under control during all of it... so that I can get the heck out of here as soon as possible. I can't wait to eat some non-processed healthy food!
Thank you for reading, thank you for praying, thank you for your support and thank you for keeping in touch with me! Hugs!
No comments:
Post a Comment