I had signs of pulmonary disease for about 20 years before being diagnosed with pulmonary fibrosis in July 2019. I was able to do everything on medication, but was winded if I did three flights of stairs. Otherwise it was under control until November 2020 when I was diagnosed with COVID with pneumonia. I was able to recover from the COVID within a few weeks, but was admitted to the hospital with pneumonia in January 2021. At this time it become increasingly more difficult to breathe.
I then had hernia repair surgery May 2021, which resulted in a pneumothorax (hole in the lining of the left lung and collapse of the lung). This necessitated that I was on oxygen full time, but at a low dose 2 litters. My pulmonologist prescribed varied medications to control the progression of the disease with little to no improvement.
By the end of 2021, my movements were further restricted. It was getting hard for me to go up one flight of stairs on level 5 of oxygen (O2 levels would go down to 41%). By April 2022, I was confined to my bedroom, because I could no longer go up and down the stairs. My O2 levels would go down to 41% having my husband give me a shower while I sat on a chair in the tub. If I walked 10 steps my O2 would be at 41% or lower. I couldn't get my resting O2 stats up above 81%. At the same time (since January 2022), I was fighting (and my transplant team was fighting) with the insurance company to get a concentrator that would go up to level 10. This affected me not being able to eat to much.
I was put on the transplant list in March 2022 at 48.6 rating. Just a little reminder the scale goes from 0-100, with 0 being a normal person (not needing anything) and 100 being imminent need. Most transplants are done between 35-50 from what my transplant team said. They gave me 3-6 months at this time.
Late April 2022, I went into the hospital because I couldn't breathe well and I was mal-nurtured with a protein deficiency. I am 5'7" and was down to 97 pounds when I was admitted even though I was having 4 boosts a day and eating as much as my body would allow at the time. They put me on oxygen at level 30 at 100% oxygen and was able to reduce the percentage down to 50% oxygen. My rating on the transplant list was increased to 75 at this time. I was in the hospital for one week while the transplant team still fought the insurance to get the higher concentrator for at home. I then got the good news that a pair of lungs were found and I would get the transplant.
I was informed at 7AM on May 4, 2022 that the lungs were found and the person was not an at risk donor. So I wasn't allowed to have my breakfast or anything to drink. There was some complication with the donor's family so the operation was delayed. I received the right lung at 11:30 PM on May 4th and left lung at 12:03 AM on May 5th. I was out of surgery at 2:30 AM. After the surgery, I was able to breathe with only 2 units of oxygen and was at 100% O2. I was in ICU for one week post surgery and I was in the hospital for exactly 2 weeks after surgery. I received physical therapy daily to try to build back up my muscles that were lost due to not being able to be active. At first it was hard to do the physical therapy, because I still had 2 of the 4 chest tubes. I would take pain medication and then do the exercises. I needed to use a walker, mainly to hold the drainage from the tubes. After getting the chest tubes out, I was able to start working on the stairs and walked with anyone that would walk with me around the unit and then by myself and just say hi as I did my laps to the different PCAs and nurses.
I have had some other complications that I never had before due to the medications. I need to be on one medication to control my heart rate. After surgery, my heart rate would go from 90 to 200 to 103 to 170 within seconds and I would be just lying down. The team was afraid that I would go into A-fib. I need to take insulin to control my sugar level. Also, I need to take magnesium three times a day. I was told by the team that when they reduce the other medications, those should be able to go away.
Since returning home, I go on walks with my husband in the neighborhood always wearing my mask. I am up to 6400 steps a day, a long way from less than 100 a day. I have had physical therapy (work on below waist) twice and occupational therapy (work on above the waist) once. Although right now there are a lot of medications that I take and my body is still trying to get used to them (whole body shakes), it is nice to breathe and interact with my family.
At first I had to go back to the hospital 2-3 times a week for doctor appointments or tests. Now 5 1/2 weeks after surgery, it is once a week. It will become less often as time goes on. After getting my staples (82 total) and stitches (from where the chest tubes were), I was finally able to take a shower. I am still not allowed to raise my arms above shoulder height, but eventually when I am more healed I will be able to. I have been steadily putting weight on. My transplant team says that I am a poster patient, because of how well I am doing. I am still pushing myself to do what I can, because I don't want to waste this opportunity. I will miss some things, like never being able to have grapefruit, grapefruit juice, pomegranates or pomegranate juice. However, it is great to be alive and really being able to live outside of my bubble (being able to leave my bedroom).