Personal Stories - Deb

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From Deb on the message boards:

"Dear family and friends of Cushing's Patients-

Please try to inform yourselves of this rarely diagnosed disease that not only causes the patient to gain weight, but because of the high Cortisol coursing through their bodies, causes damage to their skeletal, muscular, hormonal and other systems. The high levels of Cortisol disrupts their hormonal balance and may make them depressed, angry, short-tempered and not fun to be around. Elevated cortisol levels also affects the memory. Furthermore, many patients have endured disbelief and doubts regarding their health issues from friends, family, and most tragically from the medical field.

The surgery to alleviate Cushings will be stressful to them like all surgeries are. They will need extra care and quiet time to recover during the first two weeks. Sometimes, complications arise requiring even longer care.

Recovery, though, comes in two phases. Recovery from surgery is one phase lasting about 6 weeks for pituitary surgery and 3 weeks for adrenal surgery. You need to be ready to also support them in the second and much longer phase of recovery - the withdrawal from Cortisol. Because Cushing patients have well over (100 plus) the 30 mg normal high of Cortisol going through their system, their bodies react to coming back down to normal levels like a drug addict coming off of drugs. There will be physical and emotional problems as their body adjusts to the normal levels and begins to repair itself. This process can take as little as 2 months for younger people to as much as 3 or more years for others. Recovery is marked by being completely weaned from daily Cortisol replacements for 6 months or more. This does not mean their system may be fully recovered, but the worst part of recovery has been completed.

Speed to recovery depends largely on your support. In order to wean successfully, the patient needs to be subjected to as little stress as possible. This pertains to both emotional as well as physical stress. You'll need to absorb many of the chores, duties, and not expect participation in any large, extended family events. Please be understanding when they decline to participate in family events. Certainly, don't request any extra duties. Be supportive of their requests. Asking for assistance is difficult. Please be proactive and help without being asked.

Some of the withdrawal process may require additional medical intervention. This includes emotional as well as physical assistance. The most severe withdrawal outcome is adrenal crisis which may cause death due to shock if not responded to quickly and correctly. Usually a day in the hospital is required to stabilize the patient again. A medic alert bracelet should be a priority soon after the surgery and should be worn throughout the recovery process. Also, you should plan to support a crisis appropriately.

The physical withdrawals include arthritic type aches and pains making physical activity including going up stairs nearly impossible. It also includes extreme tiredness and cold sensitivity - even in the Summer months. The emotional withdrawals include all behaviors associated with hormonal fluctuations which could be depression, anxiety, hysterical crying, anger, and paranoia. As difficult as it is for family members and friends to watch their loved ones go through withdrawal, it is far worse for the individual experiencing it. They may hide some of the symptoms to protect your feelings and alleviate concerns. This recovery process takes time and patience. Please be patient..

Many family members are not warned of the lengthy recovery period and often make the mistake of expecting too much from their loved ones too early. They misinterpret their lack of activity as laziness or trying to gain attention or sympathy especially if the outward physical signs show recovery. This is certainly not the case and any allusions to this only adds to the patient's frustration and hinders their recovery.

They will come to us at cushings-support.com to seek specific support from those of us that have been through this process. However, we cannot provide the physical love and support you can. We can't be there to pick up the toys, books, magazines and to take out the garbage, the dishes and to push the vacuum cleaner and the mop. More importantly, nothing can replace the hug and tender heart from you, their loved ones. Listen and try to understand. Help and Pray for them. Try not to become frustrated...this is a slow process...with your help, they'll succeed.

Thank you for your continued support through out their recovery. You make the biggest difference in gaining back their life. Soon, you'll have the person you remembered from long ago back home with you again."