My husband will have his last adrenal gland removed next week beacuse of renal cell cancer(Kidney cancer) We understand that this will be like him having addison's diease.He will be on meds we know but we don't know much more. can some one who lives with this everyday please give me some information on what he can expect living like this day to day.We would really appreciate it.They told us that President Kennedy had this and he did just fine but that is not helping us to understand day to day life like this.

The same thing happened to my daughter when she was 2. She had cancer and she lost one adrenal gland in surgery and the other one failed b/c of the treatment. She is 14 now and she takes 5 mg of Cortef 3 times a day and .1 mg of florinef in the morning and .05 mg. of florinef at bedtime. It took a while to figure out to manage this problem but we did and your husband and you will also. As you go along and have questions I would be happy to tell you what I know about it. I think the most important thing is finding a doctor who actually work with addisonian patients. There are not that many of them out there so finding a doctor who has hands on experience is difficult. [ removed ]

andersond

brighterday..... Sorry your husband is going through these health problems. I have had addisons since 1998. The thing that will help your husband the most is to find all the addison discusson boards & ask "lots" of questions. The endos do not always give the correct info & treatment. They just do not have the experience needed to advise. Mine started me on the max dose of 30mg hydrocortisone which was way too much for me. I gained over 40 pounds & it is hard to get rid of. I have tapered myself to 20mg daily. It is also necessary to spread out the dose of steriods taken. Highest dose in a.m. Examples- 30mg daily should be 15mg first thing a.m., 10mg about noon & 5mg about 5pm. 20mg daily should be 10mg first thing a.m., 5mg about noon & 5mg about 5pm. Of course everyone is different so your husband will need to find the lowest dose he can for himself & the schedule best for him. The important thing is the doc will not usually advise medication this way. Florinef is usually taken first thing in the morning. If I am on a full tablet I split it 1/2 first thing a.m. & 1/2 at noon. His DHEA-S level will eventually go very low & he may want to replace it. It must be kept within range if on replacement. He will also need to watch the thyroid. I had to start thyroid med about a year after starting steriods. He should consider a good calcium replacement which includes magnesium & zink. He also needs to learn how to stress dose for illness or stress. Dehydration is a big problem for us so it is important to drink allot of water all day long. Many say if they take their Florinef is is not necessary for them. Being very ill is still fresh in my mind so I drink lots of water. It is also helpful to add plenty of salt to our foods along with protein.

Sorry this is so long, but I feel bad when someone is just diagnosed & has only the "from the book" information. There is so much to learn & people posting on the boards with the experience can really help make his life easier. Wanda :wave:

Thank you Anderson and Wanda B for your info.There are just so many questions.His endo has tried to make all of this sound so simple but the more I read I can't see "simple".Can you please tell me good and bad of how a daily life can be on this.I had thyroid cancer in 2002 and I feel tired and weak sometimes without a thyroid so I guess I wonder about how he will be.I would like to hear about your best and worst day if that does't sound silly.He is just driven for answers that he is not being given.He said hearing someone else that actually live it will help him.Once again thanks and my prayers are with you and your families. :)

brighterday, Yes, the endos make it sound like "you take the pill & lead a normal life". It is hard to know what to say in answer to best & worst day so I will just ramble on!! The thing to remember is that every one of us is different so you will get different info from each person. Many do very well with addisons. Climb mountains & do the long bike rides & etc. These same people have tired times of course.

I can tell you the hardest thing for me to learn is how to pace myself. I got addisons about 2 years before retirement at age 62. Before addisons there was no problem with working all day (at a computer all day) & working when I got home. After addisons I managed to make it through the day & for the first year could walk the treadmill for 20 mins everyother day after work. I was a very strong person physically with a strong will. I still have the will, but the strength is mostly gone. This is partly due to my lack of energy to excercise. I do have a large home to keep up & in summer a large garden to care for & etc & etc. so that is my excercise. If I do too much one day the next is usually a down day (lots of resting).

To answer your question...the best day for me is when I can keep going most of the day. The worst is when I am bone tired & must just sit. I am very lucky & have not had a crisis since being diagnosed. I try to be aware of what my body is telling me & increase meds when needed. If I start to get a sore throat I increase immediately. The doc will tell you to only increase if you have a fever. I have found I recover faster & usually stay out of the doctors office by increasing at first sign of a problem. Since I take the min amount of steriod I do not feel this is a problem for me.

Your husband needs to beware of the heat. Most of us have a problem with it. If he gets chilled to the bone, where you pile the blankets on & can't get warm, he probably needs more steriods. Does he have a physically hard job? What state are you in? Don't be afraid to ask questions. Wanda :wave:

He had his surgery and is ok. They have him on 20mg of meds in morn and 10 at night. I notice that he starts running down by night. Also he is a little confused when he wakes up. Just for a few minutes. He was crying when I came home from work the other day.I guess this is his body changes. I don't know. I will ask the doctor. Appreciate if you could give me your point of view. Thanks.