Last week Terry had his colonoscopy with the doctor who had figured out the pheo and what was going on with him. By the time he came into the prep room where Terry was getting ready for the procedure, Terry had already talked with the nurse and the anesthesiologist about how rare a pheo is and that they'd never actually seen a patient who had one before. His doctor is a young and enthusiastic surgeon, and was getting a lot of teasing about being so talented from the folks in the operating room before they got started. There is no way to adequately thank him for his insight, as he literally saved Terry's life when it could have easily gone the other way.
The colonoscopy itself went very quickly. The surgeon showed up about 20 minutes after they'd taken Terry, to say he was through with that procedure, but needed to do another one. Terry had vomited blood after they finished, and the doctor wanted to scope his esophagus and look down into his belly to see what was going on. He found one spot on his stomach that showed irritation and could have shed blood, but he didn't feel that was active and bleeding, so he wasn't sure where the blood came from. While he was scoping in there, he also noticed that apparently Terry's stomach is not completely emptying, and there is "backwash" for lack of a better description, that occurs when the stomach tries to empty into the small intestine and flows back in. He didn't feel it was a major concern, but they will continue to monitor that, especially if he continues to have trouble vomiting.
There was a rather large polyp that was removed, but it will be a little while before the biopsy report comes back. All in all, it was a fairly calm appointment, given what Terry's been through, and they still don't know that they've solved all of his vomiting problems. But for now it IS better, and that's a lot to say with as long as it's happened. I'm still not confident they've found all they need to find, but no negative news from the procedure has been good news.
His next appointment is with the endocrinologist who will monitor his thyroid levels and direct the radiation he will undergo for the thyroid cancer.
Tuesday, July 27, 2010
Monday, July 5, 2010
I'd Like a Second Opinion on That Referral
Almost two weeks ago, we met with the oncologist who did the post surgery follow up. He explained that based on the size of the mass on the thyroid the radiation was a non-discussion item. The recommended course of treatment on a mass the size of Terry's is always the radiation.
He was going to refer to an endocrinologist, who will not only oversee the radiation, but will also be responsible for making adjustments on the synthetic thyroid med he takes. We were told to call the oncologist's office if we did not hear from the endocrinologist. I did that, and the nurse for the oncologist let me know she was having trouble hearing back from them as they had requested the paperwork be sent again.
Having seen the slick system KU Med has for utilizing computerized records, I'm having trouble understanding how they don't have access to the same information all the other specialists from KU Med obtain. Irregardless of whether they truly do need the paperwork submitted again or not, the simple fact that they have not contacted us to let us know what the delay is has caused me to determine I'd prefer a new referral to someone different.
What we found when he was referred to the urologist and his follow up is that there is a difference with doctors who are in the same facility. When we receive personal calls from some doctors, and others cannot be bothered to have procedures in place to facilitate referrals, it's easy to see when there's a break down in the system. The urologist's office took a full week to contact me after I'd called his office asking for confirmation of whether Terry was to discontinue the antibiotic he has prescribed for the prostate issue. Discharge papers after his surgery said he was not to take it, so it seemed worth clarifying. I asked his nurse to have him speak directly with the oncologist, because it seemed to be a doctor to doctor discussion to me. He never did that, and it took a week to get the call back from his nurse.
I'm hoping there is no problem with Terry having a lapse of a week not taking the doses as prescribed. If not taking it consistently and continually alters the effectiveness, then he needed to know that. Apparently, the urologist wasn't worried about a time lapse since the call back took a while. But whether it mattered or not, it's bad business to ignore your patients. I'm entrusting Terry's life with these physicians, and if they cannot be bothered with his care, I'm not sure Terry should be bothered with having them as a specialist.
It's been a holiday weekend, so if I don't get a phone call from the endocrinologist's office tomorrow, I'm going to request a referral to a different doctor. Maybe if I'd been more demanding when this all started it wouldn't have gone on as long as it did. If it was a hard lesson learned about self and caregiver advocacy, then I need to not lose the lesson. If they can't be bothered to be timely, I can't be bothered to schedule with them for Terry's care. Seems simple enough to me.
He was going to refer to an endocrinologist, who will not only oversee the radiation, but will also be responsible for making adjustments on the synthetic thyroid med he takes. We were told to call the oncologist's office if we did not hear from the endocrinologist. I did that, and the nurse for the oncologist let me know she was having trouble hearing back from them as they had requested the paperwork be sent again.
Having seen the slick system KU Med has for utilizing computerized records, I'm having trouble understanding how they don't have access to the same information all the other specialists from KU Med obtain. Irregardless of whether they truly do need the paperwork submitted again or not, the simple fact that they have not contacted us to let us know what the delay is has caused me to determine I'd prefer a new referral to someone different.
What we found when he was referred to the urologist and his follow up is that there is a difference with doctors who are in the same facility. When we receive personal calls from some doctors, and others cannot be bothered to have procedures in place to facilitate referrals, it's easy to see when there's a break down in the system. The urologist's office took a full week to contact me after I'd called his office asking for confirmation of whether Terry was to discontinue the antibiotic he has prescribed for the prostate issue. Discharge papers after his surgery said he was not to take it, so it seemed worth clarifying. I asked his nurse to have him speak directly with the oncologist, because it seemed to be a doctor to doctor discussion to me. He never did that, and it took a week to get the call back from his nurse.
I'm hoping there is no problem with Terry having a lapse of a week not taking the doses as prescribed. If not taking it consistently and continually alters the effectiveness, then he needed to know that. Apparently, the urologist wasn't worried about a time lapse since the call back took a while. But whether it mattered or not, it's bad business to ignore your patients. I'm entrusting Terry's life with these physicians, and if they cannot be bothered with his care, I'm not sure Terry should be bothered with having them as a specialist.
It's been a holiday weekend, so if I don't get a phone call from the endocrinologist's office tomorrow, I'm going to request a referral to a different doctor. Maybe if I'd been more demanding when this all started it wouldn't have gone on as long as it did. If it was a hard lesson learned about self and caregiver advocacy, then I need to not lose the lesson. If they can't be bothered to be timely, I can't be bothered to schedule with them for Terry's care. Seems simple enough to me.
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