March 10, 2020

March 9, 2020: We meet with our transplant team and await final clearance to be re-listed from anesthesia on Wednesday, March 11th. If they are pleased with the photos from my latest bronchoscopy, I will finally be re-listed for an isolated small intestine transplant!

January 21, 2020: A post-op bronchoscopy is done at the six week mark. Dr. Murthy is pleased with the photos taken, but wants to continue on the three month recovery route to ensure full healing.

December 9, 2019: The head of thoracic surgery and an ENT performed a conjoined surgery where they resected rings 2, 3, and 4 of my trachea and connected 1 to 5. Scheduling two surgeons together at once is difficult and took over a month. I am hospitalized for four days where my chin is stitched to my chest for the first 72 hours to reduce movement of the surgical area. I am told the recovery period is three months because we can not risk being intubated again for a surgery if my airway is not fully healed.

November 2, 2019: A bronchoscopy is performed where they find the tracheal stenosis has returned. This is hazardous for the team that needs to intubate me for my transplant. We can not move forward until this is corrected, thus removing me from the transplant list (status 7). Since the diameter of my airway has narrowed by 70%, I will have to have a resection of some of the cartilage. We do not have a date for surgery yet.

October 21, 2019: I have been having more difficulty breathing and wake up in the middle of the night short of breath. It feels as if I can't get enough air into my lungs. We notify my physician and an office visit with an ENT is scheduled. He schedules another scope.

September 28, 2019: I am ACTIVELY LISTED for an isolated small bowel transplant! Thank GOD!!! This is the day we have been anxiously awaiting.

September 10, 2019

September 6, 2019: We received a call from our transplant team stating that my case had been presented to the board and that after evaluation I have been APPROVED for a small bowel transplant! The evaluation process consisted of multiple CTs, MRIs, echos, mammograms, etc. Now we must wait on approval from the national transplant network as well as from our insurance. The next step is to be actively listed!

September 3, 2019: I go in for my second bronchoscopy. When I come out and awake from the anesthesia, I'm told more dilations were unnecessary as my trachea was wide open! My thoracic surgeon came in as well during the scope and confirmed, adding that surgery would not be necessary if this diameter was kept at this width.

August 22, 2019: After speaking with our transplant team, we learn that the tracheal stenosis must be dealt with before we move forward with the transplant. Unfortunately, this is another serious surgery due to the closeness in proximity to the vocal cords. For the first 3 days of recovery, my chin would have to be stitched to my chest to ensure the cartilage does not move.

August 8, 2019: I had the bronchoscopy where my doctor dilated my trachea with a balloon and administered steroids through injections. She explained the narrowing of my trachea causing the shortness of breath and wheezing was caused by being intubated so many times in a short time frame. Tracheal stenosis is unfortunately sometimes a side effect of intubation. She referred me to a thoracic surgeon and scheduled another dilation for a month out.

August 7, 2019: I had a pulmonary consult who had me perform a breathing test immediately. He cleared my schedule of appointments for the next day to have me see another attending doctor to have a bronchoscopy performed.

August 1, 2019: I went to the ER after a long day of appointments due to shortness of breath. Many scans were performed so as to rule out the possibility of a pulmonary embolus. I was given four breathing treatments and an inhaler, but this did not seem to fix the underlying wheezing.

June 21, 2019: Discharge from the Cleveland Clinic until transplant time! We will be living in the Transplant Housing in Cleveland for the time being.

June 7, 2019: Back into surgery for the removal of a hematoma that occurred post op.

May 30, 2019: I am flown in via winged airline immediately into surgery where my necrotic small intestines and gall bladder are removed during a 6-hour operation.