Deb's Website Pages
Deb's Site Pages(Dholcomb01) are a log of her mother's experience with pheochromocytoma. She and her family have been putting much of their effort into saving their mother's life.
Deb first contacted this group after becoming concerned that her mother might have pheochromocytoma. She read about the personal stories, the symptoms and the diagnosis. That was a turning point. She began to correspond with us on a regular basis. Her family's involvement did save their mother's life. Each of the paragraphs below are a sequence of letters to our group.
Read on to see how a family's love and concern can bring about miracles:
My mom had CT SCan done to look for pheo. Her doctor's secretary called her today and said she has an appointment with a surgeon next Thursday - didn't say why or what they found or anything - just has us worried. My sister has put in a call to the doctor's office to try to get some answers but we will be lucky if we get any. I guess we are lucky at least we are moving in some direction! My prayers are with you!
This site is wonderful. The graphics at the beginning made me cry. An uphill battle sure describes the road you have to travel with this and it makes it much more bearable to know you are not alone and that someone understands and cares. You are great!
I wish I had time to write each of you separately but I don't have much time right now. I just wanted to let you know what was going on with mom. She had her surgery Monday morning. The doctor came in after a couple of hours and said it went fine and it was definitely a pheo. He said we could see her in an hour. He said they were going to observe her in ICU for a day. After 2 hours we started asking what was going on and where she was. They kept saying she was still in the recovery room and that she would be in her room in about 30 minutes. They told us which room she would be in so we went on down there. Four hours later we saw them bring her in the room on a ventilator and we overheard the nurse tell another nurse that she had crashed in the recovery room. No one would tell us anything. I called the surgeon's office. He called the hospital while I was on hold on the other line. He said her BP dropped very very low in the recovery room but that she was fine now. We were very upset that no one told us anything. He tried to smooth it over but I feel like we are still not getting the whole story. Other than this, her care has seemed to be excellent. Anyway, she stayed on the ventilator until yesterday around 5:00 p.m. They moved her out of ICU today. She is very weak and tired. She is very swollen from all the fluid they had to give her,. She has an IV line in her neck, IV in arms, oxygen on and a catheter in, so she still looks very bad with all this but at least she is off the ventilator. That was very scary, especially since we were not expecting it. She has had a rough time but I believe she will be okay. Anyone else you know of have this experience? The surgeon said today that the pathologist said the tumor looked wierd and they were sending it to another lab to have it analyzed. Any guess as to what this means? Hope to hear from you soon. Thanks for all your support.
Update:
I took my mom to the doctor for her postop visit. She was having shortness of breath and swelling in her feet and abdomen. We spent the day in the congestive heart failure unit. They ruled this out. They think she may have a blood clot in her leg. They are going to check this out tomorrow. Her blood pressure was elevated at 193/87. It is 9:15 p.m. now and I just got back from Atlanta. I am not sure what tomorrow is going to bring and if I will be here for the conference. Please keep her in your prayers.
I didn't get home until late Tuesday night. She didn't have a blood clot. They think the swelling and shortness of breath are just from the overload of fluids she received after surgery. They are treating her with diuretics. I tell you, this hospital/doctor stuff really wears you down and I am not even the patient. I don't know how you all handle it. Is it unusual for a patient to have the adrenalectomy through the laparoscope? A lot of people we dealt with in the hospital acted very surprised it was done that way. The girl who did the ultrasounds on mom's legs was so excited to meet someone who had a pheo. She said she found one on a man while doing an ultrasound about a year ago. She seemed to know more about it than most of the doctors we have dealt with. The response from everyone we have dealt with in the hospital or doctor's offices has been like Wow - they can't believe she has this. They have all heard about it but never thought they would see it because it is so rare. The look on their face is always the same. It is like they almost don't believe you when you tell them what the diagnosis is. Anyway, I just wanted to see how it went Tuesday night. Have a good day!
Update:
Just got back from visiting mom. She looks much better today!Love, Deb
Update:
Thanks so much for the info you sent me. Mom's endocrinologist called today and said her calcitonin was normal. I asked him about my sister being hyperthyroid and should she have any tests done. He said no. He said there was nothing else to worry about. He said that the pheo alone could be inherited but that it was rare. I hate to second guess the doctor but he has told me things in the past that turned out not to be the case. The first time we saw him he said that she couldn't have a pheo because her urine and blood tests were negative and of course that turned out not to be the case.Update:
Mom is doing better. We went to neurologist this week. She has been having terrible legs pains. He thinks one of her narcolepsy meds may be the cause so he stopped it. Her legs really hurt at night and she is not sleeping much. She hasn't had that med since Sunday night. She slept all night Tuesday and Wednesday with no leg pain. This is really a great relief to her. We are keeping our fingers crossed that her narcolepsy doesn't start back. Her Parkinson's seems much worse after surgery. They are trying to fine tune her meds. I don't understand all the medical mumbo jumbo but he says the chemicals being put out by the pheo could have been playing a role in her narcolepsy and now she may not need the meds. They are wanting her to go stay a week at Emory's Research Center. They say they want to study her because they know of no one else with narcolepsy and Parkinson's. They say she can give them answers no one else can. I don't know yet if she is going to agree to this or not. (She is a little sick of doctors and hospitals.). I am sure you know where she's coming from on that point. Please let me know how you are doing? : )
P.S. The other day my youngest daughter was having a really rotten day. She got one of those little Debbie raisin cakes and opened the package. It fell on the floor when she opened it. She said "Nothing has gone right for me today". I was about to put my arm around her to try to console her when she bent down to pick the cake up and started laughing. She showed me the cake and the raisins in it formed a perfect smilie face. (She is my daughter who owns everything with a smilie face on it and her personality reminds me of you.) She said "You know mom, you always said a smile can fix just about anything". She finished the rest of her day with a whole different attitude. Sometimes it is the little things that mean the most.
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