I wrote the following yesterday morning before I went in for my surgery. I woke up with a bad feeling in my gut about my surgery. I never had that before. I have had powerful dreams about my surgeries, but never not one telling me that I should not get it done. It was intense and unreal. Turns out, my gut was correct. I did not get my lung balloon dilation surgery. Turns out the doctor I thought was doing my surgery was not doing it and it was a different doctor who was just as frustrated as I was with the situation. Thankfully, spirit had my back. Spirit has always had my back and I am grateful. Here is what I wrote about my experience on my Facebook page:
This morning I woke up not feeling at peace in my spirit with what is about my surgery. I just did not feel right about it. Here is why I did not feel right about:
• Dr. Cummings did not follow through with what he told me he was going to do. Calling Dr. Anderson and talking to him about it and read through my records. I ended up going and getting my records myself and good thing I did that too.
• No one from the anesthesia department called me to go through everything including my medications. When I tell them that I have had pass tracheal spasms during surgery where my voice boxed locked and would not open that is when they call me and go through everything and even request the records. That did not happen, so this did not sit right with me.
• Then yesterday I discovered that Dr. Cumming is not even the one doing my surgery but a Dr. Skokan who I have never met and who I do not know his skill set.
• I went to my appointment anyway, but I also was prepared to say no to the surgery too. I woke up feeling that if I had the surgery as planned I would have died today.
I went to my appointment and got ready, the RN was amazing. Happy Nurses week. They rock. Then While the nurse was preparing to access my port. Dr. Skokan came in. I could tell he was a kind and thoroughly out side of the box doctor, The kind I love and need in my life. He said that he is upset with how this is going done and he does not feel comfortable. I then bluntly told him, that this is nothing personal, but I do not trust you and that I am a complicated case. Basically Dr. Cummings handed him my file, with nothing in it, not even my meds list or my past history. He knew nothing. Thank God I had the foresight to bring my past surgeries with me from Dr. Anderson. I handed him the file and told him about my complicated surgical history and he said that he will go read this while the RN access’ my port. About 20 to 25 minutes later he cames back in with the anesthesia doctor and he thanked me for bringing what I did in. I think he was shocked that I did that. I have been told I am not a normal patient and I am a planner and thinker and I have always been this way. So he told me his plan and showed me the esophagus tube that he wants to stick in to replace my trach tube. He will do this while I am in twilight, awake, but feeling funky, and then if it fits and he feels safe then he will go ahead, but if not, then he will stop, cancel this and then set me up for two weeks later after he contacts dr. Anderson and comes up with a plan with him. I told him then I am going to yell at Dr. Cummings about this, because this does not feel right. He said, or you can start seeing me since I am the expert of GPA and not him.
The tube did not fit, so I did not get the balloon dilation, but I will be. I like Dr. Skokan and I feel better about him. I do not trust Dr. Cummings and I am disappointment in my treatment from him. I am not exactly sure what I will do about it, other than to write him a message telling him, because right now. I feel like I am functioning while I am being strangled. That someone is putting pressure on my throat and cutting out the air enough that only a small trickle is available to breathe with. It is exhausting. I am overwhelmed. I am tired. An RN is going to be starting to come in to help me manage until I am not on steroids anymore with my BP.
So, my requests are, send butterfingers, lots of them. My blood sugars have been going to 37 or extremely high. Every single day. And also if you think about it send a good laugh or a blessing or a miracle that has happened in your life. That helps. And also remember to breathe, that oxygen is something we should thank God for every single day. Without it we cannot do anything and I mean that. B
Here is what I wrote before leaving for my procedure:
4:55 AM, I am making peace tonight just before my lung surgery. I do not know if I will be posting this on my blog or not before I go into my surgery. I just feel like I need to write this. To get some things out of my mind and heart right now.
I am scared. I am facing a new balloon dilation surgery in a new hospital environment, new doctor who does not know me, and I am concerned because the hospital did not call and do the normal things that Peace Health and Legacy has done with going over my medications and asking all those questions before a surgery. I find this deeply concerning. I am coming prepared though. I have my medications list with me, I have my allergic medications list with me, and I have my last surgery procedure thing that I got from Dr. Anderson with me. I am glad that Amber will be with me. I am high dosage of steroids right now. The last week or so I have been coughing out bloody mucus, which is part of the GPA and that has me worried too. I am not sure what is going to happen today or what the results will be. The unknown is scary and I am overwhelmed by everything. That is why I asked my doctor for help and my new RN starts next week. I am grateful for that.
I realize I must start taking better care of myself. I have to go deeper than I have been. Shallow self-care is not good enough anymore. I have to go deeper. I have to set clearer boundaries with myself and focus on the core things that help me. Good sleep, plenty of water, good food, and learning to st boundaries with others including myself. I do not know what that looks like for me yet. I do know, my writing needs to happen more often. I have to make different choices. I have to let go of what I think my identity is and start focusing on what I know it is and not allowing someone else tell me who they think I am.
Saturday morning at 12:26 AM, I awoke early. I woke to a voice not my own telling me that I have a choice to make “weight” or “lungs” and that I get to choose. I know this is God “spirit” talking to me because I have been so worried about weight gain from the Prednisone medication that I have to take and all the harsh medications I have to go back on. I have to get out of that mindset and get back to the mindset that breathing is more important than how much I weigh or how much I lose. I am fighting to breathe, which is everything if you want to live well. Even more important than how much you weigh. If you are not breathing then how much you weigh is not going to matter at all. I have to get real with my mindset regarding this and just so you know I am choosing my lungs.
I am declaring that I am choosing my lungs and breathing over how much I weigh and how much I have to lose. Right now, this is more important. Choosing my lungs does not mean I am going to nose dive and start eating 6 tons of junk food a day and gain 1000 pounds, no, I am not going to worry about losing any and concentrate on getting the inflammation that is causing my lungs to be destroyed under control again with harsh medications that cause weight gain and other weight issues and play havoc with my blood sugar. Yes, I will see the nutritionist and get ideas. Yes, I will going to keep track of my blood sugars and what I need to do to take of them. No, I am not going to allow having to take harsh medications destroy my ability to fight hard for my lungs. No I am not going to allow anyone including me to bully me into thinking that being fat and losing weight trumps me having working and healthy lungs. No, I am not going to allow any medical professional in my life who actually believes that. It feels good to make this choice and to verbalize it.
I also realize that I will be writing more in-depth and darker things on my blog and this journey. Because my illness has turned a nose dive and being who I am I am going to tell it like it is and not hold back. The original reason I started this blog was to document and share my journey with family and friends and not I have book reviews and other things on here. I am good with it all. I will be adding more about my medical journey back in the layout.
Keep breathing! Chao!
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