Meet Sheryl

My TBM Journey 

By Sheryl Ciavardini 

• My journey started out about 15 years ago. At that time I was teaching kindergarten full time when every 3 months I kept getting pneumonia. Pneumonia for me always ended up in the hospital for at least 6 days each visit. My pulmonologist who had been treating me for asthma couldn’t determine the root cause of my problems . He suggested that if I could afford to quit my job as a kindergarten teacher where germs are forever present I may be healthier. When I turned 60 I decided to retire from teaching and hoped for a better quality of life. Unfortunately, I still continued to get sick so my pulmonologist suspected after many diagnostic tests that I could have Gerd. He suggested I follow up with my GI doctor which I did. My GI doctor diagnosed me with silent gerd which was causing aspiration pneumonia accounting for my frequent hospitalizations. In the next four years I had three stomach operations . The first two operations failed . The third operation in November 2023 corrected my gerd and I no longer was aspirating . I was feeling great until about 10 months later when I started being short of breath , coughing, clearing my throat and being hoarse again. I really was not that concerned about it because this was my every day normal . I knew no difference. 

  
  

• Fast forward to August 2024 when I started getting a sore throat every month and was put on and off antibiotics for about 8 months total . None of my doctors could figure out why I was always sick . Based on one of my Ct scans my ENT said it was my tonsils. None of my doctors cleared me for the tonsillectomy operation, so I decided to postpone it. It was scheduled for March 18, 2024. Well two days after I postponed my operation I got very sick - I coughed non stop and was wheezing . It came on very suddenly and within 3 hours I was admitted to the hospital with pneumonia and sepsis . 7 days later after I was discharged from the hospital. I was determined to find out why I constantly got sick . 

  
  

• I completed paper work for the Mayo Clinic in April 2024 at the Rochester, Mn. branch and they accepted me as a patient . In May 2024 my husband and I drove from Atlanta which was an 18 hour drive to meet with the doctors . It was wonderful experience and the way they set up all appointments for me to get care while I was in town was amazing. After I met with each doctor they all discussed my case and concluded that I was de conditioned. I was not very happy because I worked out 4 days a week in spite of being very short of breath and having to rest often. I knew I was becoming progressively worse but l was definitely not de- conditioned. I am not overweight so that was never an issue. Before I left to come back home to Atlanta the speech therapist gave me lollipops that had numbing agents in them so if I cleared my throat or got hoarse it would help . The pulmonologist told me to increase my heart rate up to 122 bpm for at least half an hour 4 x a week and check in with her in a month . After a long drive home and feeling very disappointed we decided to go to the Mayo Clinc in Jacksonville. At the time we decided to go to Jacksonville Mayo we did not know they were a Hospital of Exceeding in the treatment of TBM . The drive to Jacksonville, Florida was 6 hours away and we had to make at least 5 trips , but the doctors really listened to me and were determined to find a reason for my shortness of breath . I had a Dynamic CT scan and several bronchoscopies. At the Mayo Clinc I had a test to see if indeed I have asthma and lo and behold I DON’T have asthma. 

  
  

Dr. Buzzy at the Mayo Clinic and his team finally diagnosed me with TBM this past November. I never even heard of that word until after my results. I was told that my trachea had collapsed 90% and it would only get worse . Traveling back and forth was getting very costly and I hated putting my dogs in the kennel all the time . I mentioned this to the Interventional pulmonologist in Jacksonville and he said Emory in Atlanta is one of the few hospitals of Excellence treating TBM and fortunately I live in Atlanta . He sent all my records to Emory and they communicated frequently. To be sure I was a good candidate for the surgery I had my stent trial put in on December by Dr. Jabber from Emory . To be honest the stents were not pleasant and I coughed constantly. In spite of the pain and coughing I could walk up my stairs without stopping or gasping for breath, I could walk up small inclines without being short of breath, I no longer cleared my throat and was not hoarse . I could finally feel what it’s like to take a breath in and fully exhale. I was however determined to keep them in for 7 days. I called my doctor and he put me on more medications for pain . The meds really didn’t help however I had a daily count down until they were removed . Fast forward to today - it’s been 7 weeks since my operation 

I can walk up and down my stairs , up inclines -and have a new feeling in my body called breathing ! I can actually feel the sensation of breathing in and exhaling now. It’s a great feeling . I’m off pain meds - still take my Gabapentin, and Tylenol every 6 hours . I did start coughing a few weeks ago but my surgeon said that will happen and will eventually go away. I know this surgery is very scary but you have to do what’s best for you. My biggest incentive for going forward is that my surgeon said 90% collapse in trachea will not get better . My granddaughter is 15 months old and I pushed her in her carriage before the operation with a lot of difficulty breathing . At that moment I decided I’m doing this operation . I want to be able to be a part of my granddaughters life . My 2 month follow up is next week and I hope he said I can finally pick up my little Ava. In closing I want to say it’s nice to have a support system in place with this disease . My husband is the one who kept pushing for answers. We traveled down many roads medically and mileage wise never giving up until we found the correct answer . Dr. Jabber and Dr. Kullar here at Emory as well as Dr. Call and Dr. Buzzy from Mayo at Jacksonville got it right and for this I am very thankful ! My husband and I joke around and say that’s it no more hospitals or surgeries for me. I want to enjoy life as best as I can with my loved ones . In closing it is my hope my story has helped you in some way . I can’t begin to say how much the Cure TBM group has helped me in my darkest moments and now I’m on the other side with many other warriors! 

If I can ever be of any assistance to any of you please don’t hesitate to reach out ! Don’t give up ! 

I’ll leave you with this quote from Thomas Edison

• Thomas Edison: "Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time."

  
  

Sheryl Ciavardini