What is Acromegaly
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). ...
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I am in the process of (probably) being diagnosed with acromegaly. Description of symptoms in nursing textbook, went to my doctor, delayed action for two years due to lack of time and insurance, went back recently and asked again, and got referred to a (diabetes) endocrinologist. He poked around a bit, asked questions and decided I had a good case. Drew some blood and reported results in five days, sent me to an ophthalmalogist who found a visual field defent consistent with a brain tumor. That was yesterday, 2-19-09. Now I have an MRI and visit with the endo and a neurosurgeon, all on 2-26-09. My head is in a whirl. I haven't said anything to my son and my daughter yet. I think I'll wait til after the MRI and results. I just paid off my little 30-acre farm (I'm widowed 9 1/2 years, 55 yrs. old) and now I'm concerned about paying for all this. Will I lose my farm to pay for all this? I'd planned on passing it on to my children, as they have nobody but me (they're 25 and 29, married daughter has a toddler and a baby with Down's Syndromea and under major stress in her life already.) The endo and neurosurgeon are neither one associated with Vanderbilt University, just down the street. Would I be better to go to a teaching hospital that might have more resources? I earn less that 9.00/hr.and just barely make enough to pay the bills. I have BlueCroos/BlueShield that will pay 80 percent. Maybe I don't have a pituitary tumor, but my symptoms tell me otherwise. I finished 2/3 of my nursing training before I had to withdraw due to exhaustion which started to affect my grades (working 32 hours on weekends). How do all of you pay for the treatments, tests, etc.? Should I try to get into Vanderbilt? And if so, how does one do that? Just ask? I wish my husband or my parents were still around to at least listen and offer some opinions and help. I'm feeling very alone, although I do realize that God is here with me, and maybe I just need to trust and keep taking one step at a time. I look forward to hearing from anyone.
Posted on 02/20/09, 06:02 pm |
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I'll tell you what I just told a friend I wish I had done almost a year ago to the day - February 14th when I found out I had a tumor. I wish I had had my wits about me and had immediately gone out and purchased long term disability insurance before there was anything anywhere on my medical records about anything that would keep me from being insurable (such as ACROMEGALY). Please think about doing that if it is at all possible for you. This is the voice of 20/20 hindsight.
When you speak with the doctors to hear what they have to say, you need someone there to help you hear, really hear everything. I think that even more after reading the message you sent a few minutes ago where it is hard for you to believe yet that any of this is really happening to you with your granchild and your health. If you don't want it to be one of your children, do you have a sibling or a close friend who could go with you? My son went with me when I went to see the first endocrinologist. I'm so glad that he did. You need the most skilled neurosurgeon possible to operate on your brain if you do have to have surgery so that should influence your choice. US News and World Reports rates hospitals according to specialties and that helped me make my decision. You are getting your foot in the door in the medical field. You might be able to ask someone for some advice from the nursing school, too. Dave Ramsey has his offices near you. He seems like a caring person and maybe you could get someone at his offices to give you some advice without having to pay a fortune for it because of your circumtances as a widow facing a potentially catastrophic illness. He has a website and you could email and at least ask and try to get something started that way and see if you could get some advice from him about how to protect the farm and other assets for your children and grandchildren. Your children are adults. They might be able to help you think this through, too. You know that more than we do, but don't be so quick to write them off and push them away and say that you have to do this on your own. This is tough to do by yourself. It's tough period. But we're tougher than we think we are. You have got things well under way now. I'm so glad you recognized those symptoms and acted on them. There are a lot things coming together for you. Here's hoping they just keep falling into place like well oiled gears. Hugs, Rose 
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Granin,
It's a very very stressful time for you, and you have a thousand thoughts going through your head by the sound of it. That's perfectly understandable. I was in a whirlwind of different thoughts before I got diagnosed, but after diagnosis I've found it much easier. I think your closing remark is the key to all this, you do have someone to turn to and in Him all things are possible. He knows of every hair on your head, and not only that, of every cell in your body. Don't worry about the journey, just rely on the light that leads your footsteps. Trys
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My heart goes out to Granin. I can offer no solutions, but just hope that by sharing her story with us she can find useful knowledge, inner strength and, of course, many caring and supportive new friends.
The new president, Barack Obama, has promised affordable healthcare for all, so let’s hope that this is not just a pipe dream but comes very soon. Also in the USA, the influential patient-run Pituitary Network Association could be of invaluable help to her. www.pituitary.org
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