This site is in "LOVING MEMORY OF DOUGLAS RAY JESTER JR", or D.J. as we his family called him.Born Feb.7,1978-Mar.26,1999. I want to welcome everyone and hope you find this site helpful and informative.I want to start off with information on the disease that caused D.J. to lose his life.

The disease is called Congenital Adrenal Hyperplasia.What it does is effect the manufacture of the "Stress" hormon Cortisol. Cortisol is produced by the Adrenal gland a small organ near the kidneys.It occurs in two forms Severe(Salt Wasting)and Mild(Non-salt wasting). In the Salt Wasting type the deficiency is more severe than the non-salt wasting.Their strong tendency to lose excessive amounts of salt in the urine(due to absence of the salt retaining hormone Aldosterone), if uncontrolled, can cause acute dehydration,very low blood pressure,nausea and vomiting.The levels of salt (sodium and chloride)and sugar(glucose) in the blood fall, and the potassium level rises. This dangerous situation is referred to as an "Adrenal Crisis". It is very Urgent to get medical treatment, for this is a life threating situation. Non-salt wasters hardly ever experience adrenal crisis, due to their bodies making more Cortisol and Aldosterone than salt wasters.
D.J. was a salt- waster, and his CAH was controlled by medications. Their are several different kinds of these medications and the doctors just kept trying different ones until they found the one that worked best for him. He was taking Dexamethazone and Florinef.

D.J. wasn't taking his medication like he should have been, and in March he became ill with a virus and pneumonia which caused him to go into a Adrenal crisis.
While laying on the couch at home he went into full arrest. When he arrived at the hospital by EMS, he already had damage to his brain that caused his heart rate and blood pressure to drop, his temperature was only 82 degrees, and his respirations were way below normal. He was placed on life support and started on several different medications for heart rate, blood pressure, and his CAH. He remained on life support until the next day when he kept going into full arrest every 30 min. to an hour.
The medications were no longer working.We were asked if he was an Organ and Tissue donor, not ever having discussed this issue, we as a family had to make the choice on our own. We decided that being the caring person D.J. was that he would of wanted it that way, so we had life support removed and let him give life to another. That was the hardest thing I've ever had to do in my life. I feel that if I had discussed the issue with my son and heard his voice say "If anything ever happens to me mom, let me give life to another", it would be easier to live with. So if you've not talked with your loved ones and made your wishes known, Please do so. We were told that if one family member said no, they couldn't let him be a donor.
Hopefully you'll never have to go through something like this, but if you do you will know what your loved one would have wanted. I have spoken with several mothers who chose to let thier child give life to another,and still they wonder "Did I make the right choice."

D.J. was down visiting with us the week-end before his death. He was his normal happy go lucky self that day.My grandson has a cat out here that he tugs around all over the place, the cat got away from him and went under the barn, well Ethan followed the cat and got stuck. He screamed like something terrible was wrong, by the time we got him out (he was mad cause he had dirt in his mouth)I was shaking,laughing and crying all at the same time. On the way back to the house D.J. said "chill out Mom, everything is alright". I told him and his sister I couldn't handle it if anything was to ever happen to any of my babies, and he told me I worried to much.
I don't think I worried enough. Oh I worried about him taking his medicine and I was always telling him about it and he would say "I'm taking my medicine, just sometimes I forget." He had lost alot of weight and he had a really dark tan.His excuse was he ran alot at work and was outside all the time, both statements were true. But now I can look back and see that it was from not taking his meds right and his CAH not being controlled. There were alot of signs.

The last day I spent with D.J. he was telling me that he had spells (as he called them) where his mind just went blank.He said he didn't pass out or anything like that, he just went blank for a few minutes.Also he talked about being hungry all the time, couldn't seem to get enough to eat. He also said at times he felt like "my insides are quivering". I asked him to explain what he was talking about and he said that was the only way he could explain it, "just feels like all my insides are quivering".
When I look back now, I can see that alot of it (I believe) had to do with his CAH not being under control. He was most usually a happy go lucky guy, but he did have times when he was moody or down in the dumps. He also was forgetful, and had headaches alot. He always said they were sinus headaches, but after reading some of the stuff on the message board, I tend to feel that they were due too CAH.

When I go look at the messages, it almost seems like I'm looking at D.J.s' life. If you are interested in learning more about CAH, or have questions the message board is a good place to go and take a look, there you will find that parents are noticing things that are simular in CAH children.

If you have any questions or if you know about CAH and have something you feel needs to be added please feel free to email me or leave a message in the guestbook. I feel you can never have to much information about something that affects your children and if you've been through it, maybe your information can help someone else.

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