Lessons Learned

 Lessons Learned

 

    From my journey of living with Cystic Fibrosis thus far, I have learned many things. Among these are, deep empathy, compassion, being as non-judgmental as possible,  advocating for myself, listening to my body, speaking up for myself, taking care of my health, the importance of having a solid support system, the importance of listening to your intuition, the importance of having a spiritual practice, resiliency, perseverance, tenacity, appreciating the small things in life- not just the big things, an appreciation for life itself, the power of faith to move mountains, the power of mind over matter, that miracles are real, and that I’m stronger than I ever gave myself credit for, just to name a few. I have been very lucky along my path as well. I have met so many earth angels along the way, that have helped me in my times of need. This includes my family, so many nurses, doctors, techs, phlebotomists, therapists, you name it. It’s taken a village to keep me thriving and I’m grateful for everything and everyone I have encountered thus far. Though this is not my complete story, it is a pretty comprehensive view of the physical aspects of my journey with Cystic Fibrosis so far

    One thing I sort of left out of this story is the amount of times doctors didn’t listen to me.  I cannot stress this enough, you must find doctors that do no gaslight you and that listen to you as you know your body best. Even if it’s a transplant doctor that doesn’t listen to your needs and concerns, you must find a new one. Your health is your number one priority. Even if it takes 10 different doctors, don’t stop until you find one that takes you seriously and listens to your needs. It’s also very important to listen to your intuition as it has valuable information.

Uterine Polyp Removal and D&C

 Uterine Polyp Removal and D&C

 

    On July 11^th, about a week after the bronchoscopy, I would have the procedure.  It had to be done in the hospital OR as I was a more complex case due to the lung transplant and they wanted to make sure I could be easily taken care of in case of an emergency. My mom took me to the hospital as we needed to arrive by 12:30pm. My procedure was scheduled for 2:30. I got checked in quickly and did my urine test.  Then I got changed and had to wipe my body down with 6 separate medicated cloths. Then I put my gown and socks on. They swabbed each of my nostrils with two separate betadine swabs each. I never had that done before. They said it helps to prevent infection from being in the hospital. The procedure was delayed by 45 minutes. That’s really not too bad for such a late procedure. The room had been ready since I got to the triage at 1pm.  I’m not entirely sure what the hold up was. Anesthesia had seen me and I signed all the paperwork. They said I had to wait for my doctor to come but when she came, she said they told her the procedure was delayed. Perhaps there was some miscommunication I don’t know. In the meantime, a student came by and told me she would be watching the procedure. I asked if she would be doing an exam as I heard when you are having procedures or surgeries in teaching hospitals, they often let a team of people practice gynecologic exams on patients without their consent. She said she would just be watching, but I really didn’t like the sound of that. If it was almost any other procedure, I would be fine with it but I’d be in a compromising position and in a vulnerable state and I really didn’t like it. She said the doctor would talk to me and I’d need to sign a consent. The doctor did come in and talk to me and I thought she’d mention it or I’d see the form but I never did. As a nurse came to wheel me into the OR, I told her I did not consent to the student watching the procedure. She said she completely understood and told my doctor. When I got to the operating room, the doctor wasn’t there yet but the student was. Immediately, the nurse told her she had to leave and talk to my doctor. When my doctor came in, she explained it was perfectly fine that I didn’t want anyone watching and that was my right. They got me prepared and then administered the meds. When I came to, I was so tired, I could barely open my eyes. But whenever I’m recovering after a procedure I try to wake up as soon as I can. I don’t know why. My nurse saw me opening my eyes and took me to another room where I was given juice and a piece of poundcake. You needed to drink and eat before you could leave. You also needed to pee, and boy did I have to pee badly! It wasn’t long before I was discharged. I actually felt pretty good after the procedure. I had the mildest of cramps; barely noticeable. When I got home, I made sure to hydrate and eat.  My kidney needed to be flushed after having almost no fluids all day. That night I had trouble falling asleep. I felt wired. Actually, I felt amazing!  I had tons of energy. I wished I could always feel so energized. After a few hours, I fell asleep. I woke up early the next day and felt amazing still! I got up, showered, and went for a walk at the park. It was 9:30am when I finished the first lap and my nurse was coming over at 10am to flush my port. She’s usually a little late due to traffic, but last time she came a little early so I decided one lap would have to do. I took the slightly longer way home.  I decided to start my laundry and before I could, my nurse had arrived 15 minutes early. This energy followed me throughout the day. It was fantastic! I did decide not to go to gentle yoga even though it probably would’ve been fine. I didn’t want to stir anything up inside.

    I didn't get my period for about 5 weeks. When it came back, it came back with a vengeance. Once again, I was passing frequent, large clots. I grew concerned quickly and phoned the gynocologist's office. It was after hours but they picked up. They told me to come by and pick up some samples of birth control and and a script I could fill. So, I have been taking the birth control for now and all is well. It did seem to give me diarrhea which I remedied by adding iron to my daily meds. Iron is pretty constipating and I had been put on it a few months ago but stopped after only a few days due to how badly it can constipate me. Now, everything seems to be evened out and my bowel movements are normal.

Heavy Periods, Uterine Biopsy

 Heavy Periods, Uterine Biopsy

 

    By this time, June of 2024, I had been dealing with irregular periods for several months. My period was coming earlier than usual, in the form of spotting. My period was only mildly heavier and lasted an extra few days. After my period ended, a few days would go by before I would start passing clots for another few days. I suspected this was because my kidney wasn’t functioning at an optimal level. This seemed to be the same thing that happened when my kidneys were failing about 13 years prior. I called my gynecologist to talk about it and she wanted me to do a transvaginal ultrasound and trans abdominal ultrasound to make sure everything looked okay. The tests came back normal. She suspected my problem very well could’ve been due to my kidney but there is no test that could confirm as much. As I am a more complex case, she suggested I do one more test. I needed to have a biopsy of my uterine lining taken. If that came back fine, then I would start on birth control for a while to stop the bleeding. By this time, I had been bleeding for a good month.

    I was told I would have some moderate cramping and that I should take some Ibuprofen before I came in for the biopsy. I cannot take Ibuprofen due to my kidney issues and I figured Tylenol wasn’t going to do anything so I just went without it. I was not prepared for the pain that would ensue. I somehow didn’t realize this was going to hurt the way it did. I needed a total of three biopsies. After the first biopsy I said, “This really hurts!” They told me that’s normal. I’m not sure why I wasn’t warned about the severity of pain. I didn’t know how I was going to make it through two more. During each biopsy I pushed my feet into the stirrups with all my might. The pain was unbelievable. By the third biopsy I had already had too much pain and was really not sure how I’d get through it. I’m not sure why anyone thinks women should have to do such biopsies without any kind of pain medicine or sedation. It seems a bit barbaric, much like the MOHS surgery on my eyelid. I left the procedure with a bit of cramping in my stomach. I came home and rested for a while. It turned out that the biopsy came back positive for polyp fragments. The doctor said I would need to have any polyps removed and I would need a D&C. If after all this I still had bleeding, then I would require birth control pills for a little while until my hormones regulated.