December 28th, 2021
I have been trying to find the words and the way to tell all of the people in my life the journey I am about to begin.
The past year has been a whirlwind. On top of restarting my MAC treatment (after a failed attempt for over a year of treatment), another blood clot, more bacterial lung infections, PICC lines, IV meds, and my declining quality of life; my team and I have made a big decision.
This upcoming February, I will be getting a right-upper lobectomy. This entails removing the entire right upper portion of my right lung. The reason behind this is we believe based on my symptoms and the presentations of the severely diseased area that it holds mycobacterium abscesses. This is the fungus I have mentioned in previous posts, we are hoping with the surgery and the treatment I am on, that we can completely eradicate the horrific fungus. For if we don’t, it could be fatal in the long run. Thankfully, the rest of my lungs are relatively good and function excellently. This surgery can give me my life back and my future of endless possibilities.
It is important to note that this journey is going to be a rough one, to say the least. I am trying to surround myself with as much love, prayers, and healing as to enter this surgery with the best mind/spirit. The following are the procedures that I will be getting done:
- Pulmonary resection
- Mediastinal lymph node biopsy
The surgery itself will be around 4-6 hours. It could take more time as we did find in a recent CT scan that my body has created blood vessels onto that diseased area. This requires a more delicate handling and my cardiothoracic surgeon has made it clear that it could prolong the surgery.
I will continue my MAC treatment as well as be put on IV antibiotics. This surgery will shake up a lot of bacteria that have been dormant for years so my body could have difficulty fighting this. The IV antibiotics ensure I have the backup ready to fight it. I will have chest tubes, be hooked up to a million devices, and be heavily monitored; as morbidities tend to occur the most directly following surgery. I will also be on a low dose of blood thinners secondary to my history of blood clots.
The hope is I will be in the hospital for as little time as possible (to avoid hospital-acquired infections and allow for quality healing). And then be managed with home care nursing at home with the help from my amazing family and friends.
My recovery will consist of a few months. I signed off on my life a few weeks prior today with my thoracic surgeon and the creation of my advanced directive. Going over the risks, side effects, the main parts of the surgery, and recovery. That documentation held a lot of scary words and life-altering perspectives.
February 16th, 2022
It has been some time since I last wrote. I have had a lot of emotions and events that have occurred since that last entry. For one, I welcomed the new year with COVID. Thankfully, I was able to manage COVID well due to my vaccination status. Prior to the COVID, my doctors were holding off IV antibiotics until after the holidays due to my recurring lung infection. Following three weeks of COVID-19 symptoms, I was put on IV antibiotics at home. Everything ran so close to surgery time. I also turned 24. A number that has certainly shown me how far I’ve come in life. How long I have continued to fight this disease. It has been a week since my surgery. I can’t find the words to place how I feel without sobbing.
July 29th, 2022
I haven’t been able to write because facing my emotions felt impossible. Since surgery, I have changed, to put it simply. I had to endure the most pain I have ever been through in my entire life. Speaking about the details of the surgery puts me right back into the moments. It was traumatic. I was stronger than I had ever had to be. Due to where the incision is and how my body is healing, I am still in extreme amounts of pain. Being diagnosed with yet another thing, post-thoracotomy syndrome. Briefly, it is pain that goes over the allotted time it takes for patients to heal and not have pain. I am seeing pain management. I am on a handful of nerve medications and have already received a nerve blocker in my back.
There have been many bumps in the road since I was wheeled out of the operating room. I had to have a chest tube for over 5 days. That may not seem like much time but God, did it feel like it (The pain and feeling — excruciating and what would be described as a foreign object wiggling around in your chest, every moment spent in agony; anyone who has had it would never wish it upon their worst enemy). The incision was made from my right shoulder blade to below my armpit. They had to use a part of my shoulder muscle for the inside of my lung, where they detached my lobe, to aid in a quicker healing process and less risk of infection. I had a JP tube which basically is attached to the area where the lobe was removed, we had to drain it every day. It was gross and was a red sack I carried around with me for a few weeks.
I am sorry I can’t continue on with writing more about it because it breaks my heart. It was one of my lowest points. What I can put here is videos that I recorded during my time in the hospital and when I was leaving. They capture the words I can’t seem to write down without a knot in my stomach and tears in my eyes.
The beginning days – on IV antibiotics for a few days prior to surgery, had to get it through an IV since I couldn’t be on blood thinners (with a PICC line, I have to be on to prevent blood clots) due to surgery.
October 7th, 2023
What a whirlwind to look back at all of this now. I am still healing, both physically and mentally, from the scars the surgery left on me. It was one of the most difficult periods of my life. Even looking back at the videos I made is extremely hard. I was at a piece of my life that felt never-ending pain and sorrow. There was so much I wasn’t prepared for. It took a toll on my mind, my body, and especially on my soul.
I am still processing it all to this day. I reflect on what I went through thinking of the strength and the admiration I hold for myself. Yet a part of me is still broken and sad, I hate everything I had to go through. It was unfair. Life can be so goddamn unfair and as positive as I aspire to be; the truth of it all is that life fucking sucks sometimes. It swallows you whole into darkness for months to years at a time and spits you out expecting you to be the same person you were before.
Every day I just hope that my sister won’t have to go through the same pain I have suffered. That I am somehow taking the brunt of it so she can be healthy and happy. I know this is highly unlikely but it makes my heart feel better with everything I struggle with. It is why I say yes to every research study thrown my way, in hopes that it will bring a better future for other CFers but especially for my amazing sister. I want the world for her and more. She deserves it.
I had more videos to post. I just can’t get myself to post them or to watch them again. The last part of this blog I made, I had to stop because I watched the videos and it broke a part of me again. Maybe years from now I can make another reflection post on my lobectomy and how I pushed through, not now. And I hope you understand that. Please be patient with me.
I want to get this posted to help a part of myself heal. To end on a positive note, through all of this, I got my MBA with a concentration in healthcare management. I am currently working at a place I dreamed of working at for years. I can finally give back to a place that has given me the best care. I want to make a difference, however small, from blogging to the job I have right now. I want to use the suffering and experiences I have had to improve others’ lives whether it be in bringing connection, healing, or improving their health.
There is a light at the end of the tunnel, no matter how small it may be. I couldn’t see it in the midst of the things I went through yet I knew it was there. I knew everything was worth pushing through, for the future. All for my husband, my family, my friends, my future kids, and most importantly me.