I have had the most horrible experince. I thought after learning to manuver the waters of Alzheimer's disorder I had learned a lot about dr and such.. but the last two days have taught me that some folks in the medical profession are either very unconcerned or just plain stupid.
I have tried for two days to get my daughter scheduled for a bioposy for a mass they found on her adrenal gland TWO weeks ago!! (she is too busy with work to do it so she told me to take care of it!!!!) I am frustrated that the dr office did not get on to it right away. If It were their daughter they I would know by now if my she has cancer or not.
I have been sent to a surgeron a urologist and back to the GP office trying to get someone to tell me when she can be scheduled for this.
Finally I discoved that the Radiologist does this procedure and was on the phone most of the day to his office trying to get through to someone who will get her scheduled for the procedure. I was promised an appointment time either this eveving or tommorow. It will be next week before she can be scheduled for anything now. I will have another weekend that I have to suffer through knowing something that is abnormal is growing in my baby's body and I don't even know if it is cancer or not. I can deal with it if I can know what I deal with but this not knowing is almost unbearable.
My hubby keeps saying that we can't do anything about it until the test is run so just to try to put it out of my mind and wait. I keep thinking this has gone on too long now if it is cancer she needs to see someone NOW.
I am sure glad this site is here...boy do I need to vent!!!!
At least my mom is some better. The amoxilcillin is helping with this last bout of fever. Hospice says it may not kill the bugs completely but will keep her more comfortable. That is all I am after these days ...to keep mom comfortable. My first prioity is my child. She may be 41 yrs old but she is still my baby!

Gab thats pretty good its a little high yes but keep taking it for the next few mornings and see if it goes down any lower I am breathing a sigh of relief here with that number you got though. Sounds like it really is stress related. But lets just see

Thanks Guys, You all always encourage me.
I did take mom's bsugar this am before she even woke up and it was 168. That was pretty high for someone who has not eaten much this week. But I did get a little peanut butter and bannana down her night before and that may have still been in her system.
I have spent the day today at daughter's PCP. I think she just wanted to see him and make sure she was ok. She is having a real hard time with the drop in cortosiol. They are giving her 50mg a day (what one nomraly has) but she has been used to over a 1000 and I think she is realizing she is not superwoman. It has only been a week since surgery and she wants to quit taking pain pills. She has cut down drastically already and I have to remind her she won't heal if she is in too much pain.
My oldest grandaughter has really stepped up to the mark and is doing a great job of taking over the house. She is trying with her two younger sister but all she does is yell at them. I think she learned that form her mom this last year. Now Michele will have to try to teach them not to yell at each other.
It will all work out I know.

Gabgan, it's par for the course that something gets outta whack when others take care of our loved ones for us. I think you have a good handle on what's going on and I know she's glad to have you home again...

My own mom went through a tremendous surgery kinda like this when I was in my mid-teens - tumour the size of a football grew out of her kidney and adhered to her spleen (HOW she "hid" an entire FOOTBALL in there is beyond me!), so all of that came out. They opened her from pubis to sternum and across the center around one side! You are so right when you said they had a chance to see EVERYTHING!! WHEW!! Just looking at incisions that size makes me shake my head in awe of the tenaciousness of the human spirit! I'm sure the shift in body chemistry is gonna throw your daughter for a loop, but perhaps (at least temporarily) it'll cause her to cool her jets and allow herself time to recover before she gets back into the saddle again.

So happy everyone survived this "family adventure" and hope that there will be no more recurance of Michele's problem.

Before you get TOO busy again, I HOPE that you will take some time out for yourself to reflect on the experience and let the stress of the last couple of months wash over you and out the door!
Many blessings to ALL of you!

I am glad Gabgan! Home at last Ill keep my fingers crossed that everything works itself out!

Now Mom Blood Sugar Level at 303...
Ok first when did you take this reading? Before or after a meal? If after this is normal...If not I want you to take the next test before her breakfast tomorrow and see what the reading is but what Im going to tell you is that this might be stress related BSL's are a good indicator of stress levels if her diet has not changed while you were gone ask what they fed her first to see that that is not the issue before you chalk this number up to stress.
My bet is it is stress thats causing the numbers to climb Tell me how it goes

Hello everyone!! IM HOME! We got out of the hospital yesterday and I drove Michele the six hour trip back to her home. She is still doing well but is very sore and tired. Seems as the adrenalin drops down now from that gigantic amout the adrenal gland was putting out she is really feeling the effects. She is also of course feeling the affects of such a major surgery...and it was major. She is cut from one side to the other and down the side the adrneal glan was on. The certainly did a completle look at everything.
Although the biopsy was not as good as we had hoped, there were cancer cells present, the dr is hopeful it is confined to the adrenal gland area. As I said before you can't get a real good ideal of what kind of cancer cells they are when they are in this area so this may be the kind that spreads and it might be the kind that only affects the local area. At least we know she will be followed by the best dr in the area. I was quite impressed with the hospital. They had four patients to one nurse. Michele got excellent care. We will just have to keep a close watch on her, somehow I am feeling good about it being out of her body and beleive it will not return.

The only anger I have to express today is my mom. She evidently had a bad week and my sister not knowing her well did not catch a few things I might have. She was very sleepy headed and did not want to eat and when I talked with siser or sitters about her they all played it down. But by Monday when she was still not eating or waking up I just had a thought and called and asked sitter to do blood sugar on her. It came back 303 so no wonder she just wanted to sleep.
Mom is not a diabetic nor has she ever had high sugar blood levels. I have used my son's monitoring kit to take it often when she would have a sweaty spell or would be sleepy headed like this and it was always normal.
Anyway I told the sitter to get hospice on line and see what they suggested.
She did and they came and guess what ...they gave mom a high hot emmena and got a lot of backed up junk out. Guess she had been backed up for awhile and I missed it because she was having some stool every day until I left for the hospital.
My sister had checked her and felt some stool pretty high and had thought to give her an emmena but didn't think I had a enemma bag. I do of course on the back of bathroom door where most folks would keep one, but anyway I don't falult sister because she is really not herself.
She had major surgery last summer and she has been telling me she gets lost when she goes to the store alone now and her hubby has stopped letting her go anywhere alone. I sure hope this is just a left over from her surgery and she will not follow mom's path. She is only 64.

Well I have to take my oldest son to gastro dr today so I got the sitter to come in today instead of tommorrow. I was up at 5:30 this am to check on mom and give her juice. She was more responsive today. I went back to bed and my sister got up turned and changed mom and left without waking us up. But then she is like that. She always did hate to hang around this area. This is just not home anymore. I am sure she misses her grandbabies.
Anyway I'm home, thanks for all the prayers good thoughts, and encouraging words.

Gabgan, you have really been through it lately. So glad you found the time and a way to update us and share the good news. While you are taking care of Michelle, I hope you can find some time to take care of yourself. Don't borrow trouble. You probably haen't had a good night's sleep in quite a while.
Still sending prayers your way, Bobcat

Gabgan I am so happy things went well for Michelle and you...Breath now dear. Take some deep breaths and just relax now for a moment to heal.
How is Michelle doing now? Tell us when you get a chance Sending good thoughts of a speedy recovery.

quote:

Originally posted by Gabgan:

Praise God!

Praise God, indeed! I'm so happy to hear the good news. I hope that Michelle continues to recover well and that you can get a little rest! Big (((hugs))) for you both...please keep us posted as you find time!

Good news! Keep us posted.

WHEW!! Gabgan, that's great news! We'll keep our fingers crossed that this problem doesn't rear its ugly head again!Please give your daughter my best wishes for a speedy recovery and major {{{hugs}}} to you, Mom!

posting here but I am not angry!!
My daughter is out of surgery and in recovery and doing well. The Dr says he got all of the mass and was able to easily lift it off her kidney so she did not lose it. He is hopeful and thinks she will be ok although it seems you cannot tell for sure if an adrenal tumor is maligant or not. He says even though they will do biopsy on it it will not be conclusive. It could return in another area and be maligant. So we are still learning patience but are releived at this time.
Thanks for all the support. I will be staying with daughter and will not be on line for the next few days. My sister is with my mom and I feel free to just put all my attention on Michele.
The wating roon her in this grand hospital has wireless internet connection and my hubby loaned me his computer to let you all know the news.
Praise God!

Thanks for the encouragement. The dr and Michele talked on phone a short time ago and he is concerned that the kidney may be involved. He is going to have to open her up and take a good look at things. He had said he would attemtp a laprascopic first if he could and maybe she would not have such a bad time of it. But now after he saw the latest CAT scan he wants to open her up and make sure of what all needs to come out. This must be his specialty. He just did one today he told her and it was larger than hers. I am concerned for her health she is having so many symptoms. Weight gain, BP stomach pain, blood sugar drops, etc. Most of these have happened since Christmas.

Yes Bobcat, I am eating...you see when I have a crisis all I do is eat. My hubby is having to warn me about it. I go with something in my hand all the time...trying to stick to healthy food but you know the comfort food is not healthy.
At least my sister is planing on coming to stay with mom. Mom had an unusually good day today. She looked straight at my grandaughter and told her she loved her. Don't know where that came from except grandaughter was feeding her at the time and I guess mom was happy with her.

Hang in there, Gabgan. The uncertainty definitely makes for long days and sleepless nights.

I don't know if this will help to reassure you at all, but when my stepfather was diagnosed with a tumor on his adrenal gland, we were told that it was exceedingly rare for these to be cancerous. The main reason that they decided to remove it was that it was causing his gland to overproduce adrenaline, which was causing a multitude of dangerous symptoms. His was in the larger range of these tumors, and that was a concern as well. It wazn't cancer. Even after having it removed, he did have to be closely monitored because the remaining gland's ability to regulate his adrenaline was damaged by the period of time the sick one was overproducing so he went the other way into adrenal insufficiency. They expected it to recover, but it never did function entirely properly. With supplements and careful monitoring, he regained his health and lived a perfectly normal life after the surgery.

Hopefully, they see things, that are accurate, and allow them to be less alarmed and urgent than you or I would be. Like you, I want things done, need things done, and over with results fast. The waiting is H**l, and this has gone on so long. Breathe deep. At least things are scheduled now.
Hope your Mom is comfortable now, and that issue is under control, while you deal with your daughter's med probs. Just keep venting, and take care of yourself as best you can.
You are eating, right? I keep reminding myself, every time these things come up, that if you don't take care of yourself, you can't take care of anyone else. Hollow words.
That's why I use these opportunities to remind myself. Prayers always your way. Bobcat

Ok Folks let me vent some more!!!
I just got off phone with the dr office who will do the surgery on my daughter but....not until April 4th. I know drs have other folks to see and other folks that need them but I just can't beleive you can tell someone they have a thing growing in a place that is completely disrupting their life and may be cancer and let them wait three weeks to get it taken out.!!

I could have taken two weeks. I even had myself prepared for that but when she said Aril 4th I nearly dropped my teeth.
It will be two days shy of one month which is what I understand is the limit on the pre op workup. Guess I should be glad she had that done or else we might be looking at an even longer time.
Don't pay any attention to me. I am just so upset and mad and just want to know my baby is ok. Yet in my heart I feel things are ok. I have prayed and gotten peace about it. Even if it turns out to be cancer God is still in control and I know with Him I can handle that too.
Thanks for all your well wishes and prayers sent my way. I credit them for my peace of mind. Now if I can just get over myself things will be better.

Frustrating as it may seem, this is par for the course. Surgeons always consult first and do their magic on another appointment. This is for the best as many folks arrive on their doorstep with referrals and tests and films that don't show the surgeon what he/she needs to do the job. They MUST verify that THEY think the person needs surgery. They cannot schedule tests, consultations, etc. and turn around and throw someone on the table the same day unless the situation is critical and grave. As aggravating as it is, I am glad that surgeons verify things for themselves BEFORE scheduling a surgery. So many times, a surgeon, who is more familiar with the particulars of the procedure, will opt NOT to do surgery, see something the other folks missed or require more specific information before they are willing to cut on someone. This is a GOOD thing. I would a million times rather that each doc verifies and reverifies the findings so that everyone is on the same page. This is due diligence and it is mandatory in the medical field. I would be scared silly of a doc who rushed through a couple of tests and the next thing one knows, they are on the table having a procedure that perhaps they don't need or is inappropriate (or outdated) therapy for the condition.

Sure, waiting is tough, but we all stand in the triage line - the most acute, severe cases go first. Why, just getting a urinalysis and culture sensitivity, depending on what day of the week the sample is drawn, can take 10 days to get through the process!

Settle down, Mom. Things are proceeding and I think things will come out just fine. Although EVERY health problem is an acute crisis for loved ones, in the larger scheme of things, most are not considered emergencies. An emergency is a condition that immediately threatens the life of a patient, such as a hemmorhage, an obstruction, etc. A surgeon's schedule has to be flexible enough to accommodate situations of an emergency nature. Far better to be in the "holding pattern" than to be the person who needs an emergency runway cleared. It is actually good news and comforting that the surgeon thinks the situation can wait and is NOT an emergency!

Take heart, Mama Gabgan. Soon, things will be resolved and this frustrating time will fade into memory as your daughter recovers from her illness and surgery. Please continue to keep us posted.

And they couldnt have informed you 2 of this before you made a trip there Gab? I cant believe this cr** I would have been yellin at someone at this point! The audacity of them to pull something like this EWWWW
at this point Im walkin away grumblin I funna knock someone on their ass tell me I drove down here for WHAT a five minute face to face to tell me the doc dont preform no stinkeen surgery today?! SMACK BAM BOOM Im hot wheres the cold water dunk me Im gonna kill somethin! Daggummit Im off to the corner again Harry whiskey the WHOLE bottle!

Gabgan, I am pulling my hair out with you. This is the care we and loved ones get with "real" insurance???? I dread the gov. nationalizing this, given their current track record of beurocratic missmanagement. This is unreal or surreal. Hang in there Honey!! Stay calm as you can. Let me pull my hair out for you. Prayers and hugs all the way.
Bobcat

Well folks I am still frustrated with the medical folks.
My daughter made a six-seven hour drive to Nashville to be told by the dr that she has a tumor on her adrenal gland and is going to have to have it removed...what planet are these folks on. We already knew that.
Now they are sending her home because the dr only does surgery on Tues Wed and Thur and he is booked up this week. He is doing another cat scan so he can see just what he will be needing to do when he gets in there and she will talk with the Anethesolgist so that when she get the call she will just go straight to surgery when she gets there. So I guess we are closer but not close enough for me.

The dr agrees that her cortisol level is sky high and her bp is up somewhat but does not think she is in danger at this point. Wonder what he would be doing if this was his daughter?
Any way I am still frustrated, it is out of my control and I just can't stand not to be able to make things happen for my daughter and get her fixed. I am a fixer and have evidently not learned my lesson from my mom that not everything can be fixed. Mom continues to decline but ever so slowly. I guess that is good. I don't know how I would handle her getting terminal at this point.