October 23rd we finally met with Dr. Cheng, he was very straightforward and got right to business. Our team wanted us to meet with him 4 weeks ago but he was out of the country. He asked a bunch of questions, some I don’t know that we had the right answer for. How many times had Heidi been on steroids? How long was she on them? She’s been on so many meds over the years it was hard to track.
He thinks that the steroids are the cause of her bone damage. After reviewing her past image results he found that she had this going back to spring of 2020, that was shocking to both Heidi and myself. Why was this overlooked? He doesn’t think it is why she’s in pain, join coincided.
So her shoulders and left hip are bothering her also, he ordered an MRI with and without contrast to see what else maybe going on.
October 25th Heidi had a pre-op physical at the local clinic. She went solo as I had to work but did fine on her own. The doctor did call me to address a few things and tell us to stop a medication before her biopsy the following week. No other concerns from that appointment.
November 1st: Heidi had a biopsy scheduled at 9am so that meant a 7:30 check in at the U. That also meant we checked in with the cranky receptionist asking Heidi why she wasn’t in scrubs if she was working?? Oh fun times. The nurse was having a hard time accessing her veins for an IV in her arm so they put one in her hand, I warned Heidi as that hurts when the medication goes in. We probably could have pushed for the specialist to come in but Heidi said the hand was fine, she may have regretted that later but pushed her own propofol and knocked herself out so it worked out ok.
After she woke up from the LP and BMB the nurse called ultrasound and the tech did her testing in the recovery room while Heidi was waking up. She had an echocardiogram, which she’s had yearly for monitoring. After we were free to leave the recovery area Heidi had to get a Dexa scan to see what was going on, then we were able to go home.
November 2nd: appointment with Dr. Wagner.
Dr Wagner is her transplant doctor and has been following Heidi since January 2019, he is great with Heidi and totally tells her like it is but in a gentle manner. Heidi decided on her own to stop taking a med he asked why? “Just because” he recommended to start back on it he reviewed her tests from the previous day and he said the Echo showed an enlarged left atrium but I don’t see that listed on the results so I’ll have to mention that at our next appointment. Her heart rate has need fast, upper 130’s so he requested an EKG. Dr Wagner is also looking at maybe doing a cardiologist consultation, we will talk to the team next week on that. Overall he is not seeing any concerns that she has cancer. The results came back later that day for 2/3 tests and they showed no evidence of disease which is good.
After the oncology appointment Heidi had a pulmonary function test which she normally has once a year. We will follow up on that one next week also.
November 6th: today brought us to ENT and Dr. Janus. He was asked to consult for her nose and ears as she’s been having a little problem hearing. He thinks it may be Eustachian Tube dysfunction. And has Heidi trying. Type of nasal spray in hopes of opening that canal. We will have a hearing test in 5 weeks and see him the following week for the results. He thinks she may need tubes (again) to help with drainage.
Next up is an MRI on Wednesday for her hips and shoulders. The orthopedic surgeon thinks she may have osteonecrosis in those areas but wants a deep look to make sure. We follow up with him via virtual visit on Thursday.
Thank you all for your continued support, we appreciate it so very much!
