A lot has been going on lately. And to to be honest, I have been doing a lot of whining. I realize that is a part of life. However, I don't want to blog while whining, for fear of saying something I cannot take back, of hurting someone else or putting forward a negative self. I believe in being honest but not hurtful to those who don't deserve it.
And on to this day... Today was the very 1st day since I was diagnosed with my PE that I actually felt like myself for a little while. I enjoyed a day where I went 19.5 hours between doses of pain meds. Its the longest I have gone and I honestly was feeling a bit better. I wasn't just trying to extend the time. It was so nice. When I finally took the pain meds tonight, I kind of smiled. I was able to go awhile between meds but I was also able to recognize when I needed them again and actually take them. Its moving forward for me physically and mentally, a little less stubborn... a little. Additionally, I got to go out with a friend and chat for a couple of hours. Since "me" time virtually does not exist anymore (and I am not complaining), it was a nice few hours.
And this week... Friday morning, I went in for a blood draw. My INR was still at 1.9 (just shy of my 2.0-3.0 they want). It had been at 1.9 Tuesday as well. So while I was happy it wasn't bouncing around, I was a little frustrated it hadn't moved up the 0.1 minimum it needed. Friday, I was also dealing with more pain than I had since practically leaving the hospital. Even though the doctor at my ER visit earlier on had confirmed pain was normal, this was so high and uncomfortable to me, I couldn't help but say something. When my clinical pharmacist called to give me the results of my INR, I let her know. She asked me to be seen if it or my breathing got worse. As far as I was concerned, it did. We waited until the morning as the pain was as under control as it could be. I went in to the ER around 9 am after not sleeping more than an hour or two all night. (Urgent Care doesn't take my medical coverage so the ER is usually my only option when things "pop up.") There was one person in front of me. Apparently, the quiet ER didn't last, as within 30 minutes of my arrival it was a zoo. I was in a bed in the hallway, not hooked up to anything, with no nurse in sight for almost an hour. I was peeved but realized the several kids that came in after me, as well as others I am sure seemed more important. At least I acted stable. And I had come in under a strong recommendation from my CP that I had emphasized to them. (Hey, sometimes I feel like a "crazy" person. I may have said she recommended it 5 or 6 or 7 times...)
The lady from the lab finally showed up to draw my blood and I spilled emotionally all over her. She was so sweet though and really listened to me. As she was walking away, the PA on duty came to talk to me. He quickly got my explanation (in which, since I felt rushed I missed giving him info) and told me he would be checking in with the doctor and come back. The nurse came by to let me know that I would be getting an x-ray soon. And I laid there. Eventually, I was taken for the chest x-ray and then I laid there some more. The PA came back and told me my INR was 2.2. I was definitely surprised but thrilled to hear it. He also told me that I had a pleural effusion. Apparently, during the last ER visit it had been discovered. I had not heard about it. Its a small fluid filled sac that is usually spottted before a diagnoses of PE is made. He said it had grown slightly but did not concern him. He also said everything else looked normal. When I inquired about the spreading pain I had, he told me it was normal as well. There was a chance I could have a second PE, but the meds I am on were about the max I could be on and would help me anyway. There was no need for a CT due to the "normality" of my symptoms. I was cleared to go with a refill on my pain meds (never thought I would need those ever in my lifetime). I was happy to be out of there at that point. Once discharged, we headed to pick up my prescriptions (incl. the Coumadin refill that had been made the day before) and headed home so David could go to work. We were bummed he couldn't be home since I was running on so little sleep and I felt crummy but it was life. He wasn't closing so at least I would see him that night.
Yesterday I woke up ready to go to my blood draw and panicked at the sight of blue-purple fingernails. It looked like ink and bruising. I was confused and ran to the sink to run them under water. This helped some, as all but the thumbs faded in color some. I couldn't get it out of my mind. I went to my friend's house for a play date after the draw and waited for the usual call in the evening regarding my INR. As 6 pm came and went, I finally called my CPs. Apparently she had called earlier and left a voice mail but it never showed up on my phone somehow. She had wanted me to know I didn't need a blood draw since the one Saturday was good. As it turns out it was 2.1 (still yay!).I told her about the fingers. She seemed puzzled and concerned. With my INR under control and my pain and breathing doing much better, it didn't add up. She said to only go to the ER if the pain got worse with the discoloration. She called in the a.m. today to check. I tried to make an appointment at my clinic but the only one available was the one with the PA we had previously met at the clinic who had not treated us too well and had not helped either. She asked me to come by and see her later so she get an idea. When we saw her, she said there didn't appear to be a reason for concern. (They had significantly improved by this point and were only slightly off.) She asked me to follow up with my preferred doctor at the clinic. She was actually able to make me an appointment for Friday just to make sure. This gave us some relief so I could get out and relax for a little this evening.
And a life... I'm gonna let you know. Today, I got a glimpse of me, the side of me that is happiest, "normal" (I hate that word.) The point is that I was reminded that things WILL get better with time. This really is a rocky, hilly road with peaks and valleys. That is okay. Today I smiled again and was reminded there is life after a pulmonary embolism. Eventually, it will get smaller and hopefully even disappear. I will never be the same but that is okay. God is good. He has taken care of me so far and he will continue to do so.
[You may have noticed I left out the "year" portion. I may be making progress BUT right now, I am not ready to go down that road. Any mention of the "baby" word reduces me into a puddle inside right now. I know I will readdress that at some point but honestly, I don't want to right now. Thank you all for continuing to read and pray. God is good and with Him and all of this fabulous support, I will make it through.]
That's all for now...
*Melis*
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