Bringing Back My Real Self With Hormones

This person's experience rebuilding her life after pituitary disease is very familiar.  It shouldn't be this difficult, should it?!

"And access to these medications should not be hindered. As it stands today, some of the hormones I need daily to stay alive and to thrive can be, and frequently have been, blocked at the whim or neglect of a doctor's office, insurance company or pharmacy. And still, 18 years after my surgery and despite great advances in endocrinal science, I need to fight to get them.

Disputes between organizations on whether prescriptions, test results or proper forms were transmitted or not. Communication breakdowns. A Kafka-esque nightmare of constantly needing another approval. It can take weeks to be notified of a rejection.

I spend an average of 10 hours a month nudging, charming, name-dropping, fulfilling requirements and at times getting angry to try to persuade a chain of people to let me get the neurochemicals that I need at whatever the price. I usually spend between $100 and $1,000 per month on these chemicals, depending on what health insurance I have had at the time. On occasion it has run $5,000 per month. Sometimes health insurance has covered all the cost except a standard co-pay, sometimes very little.

Patients need more control in this process. Any number of people in the chain can keep us from our drugs — the effect is multiplied for me by the dozen meds that I take. The more expensive ones always seem harder to get and involve more steps. Thus more things that can and do go wrong in the perfect chain of dozens of people who need to move my case along for me to get my meds.

A common response is utter disbelief. Most people go the pharmacy and get their prescriptions filled, and the worst indignity is a long line. Their personality won't go wild. A part of my body has been removed, it will never come back, and I need to take a dozen meds every day or I could get sick or die. Among the drugs I need to take are human growth hormone, hydrocortisone and thyroid hormones. How can we resolve these challenges?"

http://www.nytimes.com/2013/11/24/opinion/sunday/bringing-back-my-real-self-with-hormones.html?_r=0

BLA stats: good news!

Surgical outcomes of laparoscopic adrenalectomy for patients with Cushing's and subclinical Cushing's syndrome: a single center experience

International Urology and Nephrology

December 2011, Volume 43, Issue 4, pp 975-981

• Minoru Miyazato, 
• Shigeto Ishidoya, 
• Fumitoshi Satoh, 
• Ryo Morimoto, 
• Yasuhiro Kaiho, 
• Shigeyuki Yamada, 
• Akihiro Ito, 
• Haruo Nakagawa, 
• Sadayoshi Ito, 
• Yoichi Arai

Abstract

Objective

We retrospectively examined the outcome of patients who underwent laparoscopic adrenalectomy for Cushing's/subclinical Cushing's syndrome in our single institute.

Patients and methods

Between 1994 and 2008, a total of 114 patients (29 males and 85 females, median age 54 years) with adrenal Cushing's/subclinical Cushing's syndrome were studied. We compared the outcome of patients who underwent laparoscopic adrenalectomy between intraperitoneal and retroperitoneal approaches. Surgical complications were graded according to the Clavien grading system. We also examined the long-term results of subclinical Cushing's syndrome after laparoscopic adrenalectomy.

Results

Laparoscopic surgical outcome did not differ significantly between patients with Cushing's syndrome and those with subclinical Cushing's syndrome. Patients who underwent laparoscopic intraperitoneal adrenalectomy had longer operative time than those who received retroperitoneal adrenalectomy (188.2 min vs. 160.9 min). However, operative blood loss and surgical complications were similar between both approaches. There were no complications of Clavien grade III or higher in either intraperitoneal or retroperitoneal approach. We confirmed the improvement of hypertension and glucose tolerance in patients with subclinical Cushing's syndrome after laparoscopic adrenalectomy. [blogger's emphasis]

Conclusions

Laparoscopic adrenalectomy for adrenal Cushing's/subclinical Cushing's syndrome is safe and feasible in either intraperitoneal or retroperitoneal approach. The use of the Clavien grading system for reporting complications in the laparoscopic adrenalectomy is encouraged for a valuable quality assessment.

http://link.springer.com/article/10.1007%2Fs11255-011-9950-9