2 days

During the last 2 days (Friday and Saturday), I have been facing a new battle that I certainly have not expected, at an intensity that I have not expected. Yesterday I woke up and had my first, of what would be a series of debilitating panic attacks. Panic attacks that constricted my air ways so much that the team had thought that I had collapsed my lungs.

Yesterday morning I woke up and I could not breathe. I slept for a few more hours than usual and no one woke me up as I have not been sleeping well and they thought to let me sleep. When I did finally wake up, I was so congested with mucus that I was unable to catch my breath after taking off the Bi-pap. Along with the pain that I was experiencing in my lungs, I quickly became unable to move and panicked. I used my call bell to get help, but at that point I knew I was in trouble. The nurse came in to give me my IV medication and my pain medication, and from then on everything is a blur. I was unable to breathe, gasping, begging for her to help me. All I really remember then is a stream of people coming in, coaching me through the breathing, telling me that they were hearing air in my lungs, that they were still working. A portable x-ray machine was suddenly here and I had a blood gas done. I have no idea how my RT did a blood gas during that first few minutes. I remember I was shaking. They asked if I wanted morphine, I said yes I did. I got it. Relief came.

This is hard to write. It was terrible. I cannot describe what it felt like, aside from drowning or choking over and over again. I was completely floored by what had happened, and what was more alarming, was that it set off a stream of panic attacks for the rest of the day and night. I was mostly sedated for the rest of the day. Clearly not myself. In and out of mini attacks and tears and pain. At one point the pharmacist came in to talk to me about a new anti-biotic that I was going to be taking. My doctors and I had decided that I needed a change, my white count was rising again. So we chose the only drug I have not been on in my life, a drug they only use when options become scarce either due to allergies, or in my case when we're at the end of the line in terms of organ failure and all other options were used and reused and basically used up. So we decided to use Chloramphenical. It has one serious side effect which is the reason that they do not use it until there are no other choices. I will not go into details, but this rare side effect would keep me from a successful lung transplant. The pharmacist came in to encourage me that it was so rare they have never seen it, and in fact research had shown that it only presented itself in the asian population. It is however something they have to tell us about, and I did not use it up until now due to this side effect. I wanted to exhaust all my other options. Anyhow, on Friday I was in such a state, that when he came in to talk to me, mid way during him speaking my ears shut down and started to ring. I heard blood rushing, and heard him no more. Now that's a clear signal from the psyche if I ever heard one! My body was tired, but my mind decided it too needed a break.


Breaking the cycle of the panic was the only thing that helped. Someone was here with me all Friday and yesterday. I needed security and pain meds, and we got through it. But I cannot believe the extend that my body shut down. I was reassured over and over that my lungs were no worse or better, that this was my mind reacting to stress, pain, and difficulty breathing. The power of that is shocking to me. Not so shocking to the medical staff that understand that I am under a lot of stress. Add to that, moments when I cannot catch my breath, hyperventilation, coughing spasms, pain, and new medications., and it all adds up not only physically.


Yesterday was already better. John came both mornings at 6am to see me wake up. Waking up is very hard right now. Sleeping is too, but once I sleep I want to sleep more, and since my mucus builds up, I need to wake up every few hours and clear it out with masks and physio. It's a lot of work, but the alternative is a morning like Friday.


To add insult to injury, if you want to call it that, yesterday morning I coughed a lot of blood up. It poured out of me. John held the garbage can at the side of my bed. Imagine that in the middle of a panic attack. But John made me focus on him, look him in the eye, and we worked through it. We knew what blood was, it was nothing, he said. Just a burst blood vessel. We've seen it before and it's nothing. Get it all out. And I did. The docs took another portable x-ray (I'm getting used to those in my room) and the respirologist on call came to see me. She gave me more Vitamin K and Tranexamic acid to help stop the bleeding. It did, I did not have any more blood.


Today I am happy to say I am basically back to myself. Breathing is good, mind and body are relatively at peace. I think I put too much pressure on myself and think I can take it all, and obviously I can't. Clearly I can't. I stopped the morphine today, and am now back to my Percs for lung pain. I am starting to remember less and less of Friday. I get the two days confused for sure. I know I 'lost it'. That's the best way to put it. My body was just in over-load and my mind had to shut off. I learned something about pain management and asking for help. I need to do more of both. I can't let my pain get so bad that I go into shock. And I have to understand that by not being able to do things for myself I am a disabled person now. Just because in bed I can talk and laugh and overall be ok, the fact is I can't get up easily and get to the bathroom. Everything takes time. I can hyperventilate easily, since I have so little of my lugs working, and so little reserve. Since I can't get up and walk away right now, not down the hall, not down the street, my level of dependence is high, and that's hard for anyone. For a person such as myself that has always led a very independent life, this is something that I have to learn how to do, accept, and not let distract me from the fact that it is very temporary.


These posts can get very overwhelming, I now. But coming along with me on this transplant path, means that you are along for the full ride. And I don't think it's an easy one to read. I hope to have more better than bad days, but I will continue to write as it is, from my heart. I think we rarely get to see inside of the world of someone that is very sick. This world is so intimate for people, as it is to me. It is filled with images and scenarios that are better left for day time soaps, but for so many people they are real. By sharing this, I am feeling that I get to put each day behind me. Thank you for being there for me, putting each day behind me, being that much closer to the future that is ahead.