SO FED UP with medical community!

[Libbyt]

Please allow me a brief vent.......not many people GET why this is so exceedingly frustrating........my daughter is having very frequent passing out episodes (I think I've posted about this on another thread). We had a consultation (at our cardiologist's office, 1 hr away) with an electro physiologist several weeks ago and he recommended we come to his office (3 hours away) to do some in-depth testing. At first we were scheduled to do it next week, then mysteriously the neuro people "just couldn't make it that day" so they pushed us out a week, now they've pushed us out UNTIL JULY 13TH!!!!!

I've spent hours on the phone with the nurse, going thru the doctor's calendar (and I really don't care that on this day he's in the lab, this day he's in surgery, this day he's on service, blah, blah - just tell me what days he IS available) and his vacation schedule, and the neuro person's vacation schedule - 2 weeks each, back to back, mind you. My daughter is terrified that she is going to die! I am terrified that her condition is escalating and we can't find a reason WHY this is happening!

I know that we are going to a medical facility that is one of the best in the country, and that this testing is very sophisticated and they are one of only a couple places in the world that do this, but DANG!!!!!!! They just don't get why I am losing my mind over this!!!!!

OK, vent over, I'm going to grip on myself and get back to living!!

Thanks!
Libby

 

[bookwormde]

We have all been where you are it some level so we understand your vent.

I actually have an aspie niece who has had a less frequent and less rapid version of what you describe. They have been trying to figure it out for 10 years. Her’s generally occurs during some change in posture and she has become adept at recognizing it early and just “letting it pass”. I have pretty well written it off to some type of subconscious sensory differential. I have a version of this also, I am very sensitive to changes in blood volume to the point that if I cut myself and do not realize it, I can “feel” it by a “light headiness” and know to go looking for a “leak”. And this is for not much more than a CC.

bookwormde

 

[pudge the fish]

vent away thats what we are here for

I have also been there
dealt with it and still have to deal at times
it's NO fun

it seems no one else is worried while we wait and wait and wait..

 

[mechurchlady]

vent away thats what we are here for

I have also been there
dealt with it and still have to deal at times
it's NO fun

it seems no one else is worried while we wait and wait and wait..

I agree with the wise Pudge and I would make a phone call and speak to the doctor personally. It is a dangerous condition to have people passing out.

Tell your daughter she is not going to die and find the evidence on line to prove it. Now go get your whip and chains and mace and attack that doctor. He can postpone blood tests for cholesterol but not something this important. He needs some arm chewing and be put in his right place. I will be available for head thumping of said doctor next week if you need a posse to go with you and get him to wake up to the damage he could be doing.

now big hugs and lots of calming chocolates.
Laurie

Remember that there is righteous anger and you are so right to be angry.

 

[locolala]

Man, I'm sorry you're having to deal with this. I had to wait a month to get a brain scan to find out if I had a tumor causing my migranes (I have neurofibromatosis so they say I'm more prone to get them). I ended up having to go in at 0130 to get it done.. yeah, one thirty in the morning. I've called the base hospital because I thought I had a UTI and they told me they had an appointment a month later. I ended up just going to the ER that night. I would call every stinkin day until they get you in.

 

[Beccabunny]

Oh, I can so relate to this. We've had numerous appointments cancelled on us and then had to wait months for a new one. Right now I'm just fed up on so many levels. I've had my daughter all over the country for GI and metabolic issues, and it looks like I'm going to have to find a new endocrinologist if the one we have here doesn't get her act together. I had a metabolic specialist tell me something is wrong with my daughter but she couldn't "put her finger on it." Did she suggest further testing or refer me to someone else? No, she just said to come back in a year and maybe by then more research would be done. The endocrinologist showed me some test results and said they weren't "normal" but that she didn't know what they meant. Did she refer me to someone else? No. I had to talk her into doing more tests. A month later I'm still waiting for her to give me the results. I am tired of going to Boston, Cleveland, and Florida when we have two children's hospitals right here in Philly. At least we got to go to Disney when we flew down for the last doctor's appointment, so I guess I shouldn't complain, but it's extremely frustrating when you've got a sick kid who is clearly suffering.

 

[Libbyt]

Don't you wish all those doctors and scheduling people could be there in your shoes JUST ONE TIME when your kid is really sick, to feel the panic and worry and anxiety you feel??? We've gone through this all Sally's life - knowing that SOMETHING is wrong but not able to identify what it is! BeccaBunny, your situation is exactly what happened to us - our daughter first had genetic testing when she was 2, showed up nothing, then at 19 something was finally identified. Sometimes it's great to be ahead of the curve, sometimes it's NOT!!

Thanks all for the good wishes and the posse offers - hadn't thought of that, but it's sounding more appealing!

 

[KPeveler]

i totally understand - i have had a progressive paralysis increasing rapidly over the last 6 months, and when i ask for more MRIs (last ones were a year ago) or ANY testing to find out why, i get the answer "in a while." umm, can't walk here! have co-existing conditions that make this extremely dangerous.

I would definitely call the dr to find out what is going on - a sick child is nothing to be put off!

 

[PatMcDuck]

My DD is seen by 5-6 specialists in the same children's hospital. A one point, last year, she was vomiting EVERY night, for about 8 hours. Violently. I could not get in with a gastro there, and finally just went to the ER. We got the tests, and a gastro attending came down and saw her as well. This also got us an appointment with her within a week as an outpatient.

We really try and see all the specialists at the same hospital. It is so much easier, for them to coordinate her care, and they can see the tests on the computer.

the other thing that has been recently helpful has been switching her primary doctor to the hospital's adolescent department. This gives us a primary IN the same hospital system, who has contacts with other doctors, is willing and able to email specialists and get us appointments! (DD is 17/ w use a local peds for minor stuff)

 

[Libbyt]

PatMcDuck, you point out yet ANOTHER medical system problem we are having........we had gotten Sally established with an internist here in our town. She and I both started seeing this woman when she was with another practice, and we moved with her when she opened her own place. Both of us were really comfortable with her, I've gotten settled in with her partner for other issues, everything's great - just (for Sally) mainly for a medical home - she sees specialists for most of her primary issues.

They call me up one day with "Sally can't be seen by our practice any more because she has Medicaid - she'll lose her Medicaid and we 'll lose our license to practice." WTH??? She has Medicaid because she turned 18 and started getting SS. It is secondary to our private insurance and I have never asked this practice to file anything on it - the only thing they ever do for us is just basic office stuff, yearly physical, Gardasil shots, etc. I called the state office and was assured that this was NOT accurate - they could not lose their license, etc. Went back to them. Oh no, too bad, so sad - we're not seeing her under any circumstances. Can you say DISCRIMINATION??? But what options do I have - they're a private practice, they can see who they want. Now I have the monumental task of finding someone else that she'll be comfortable with, someone to explain aaaaaalllll the other weird things that are going on with her, etc. AAAARRRRGGGGHHHH. It just NEVER ends, does it??

 

[mechurchlady]

Let me tell you about my wonderful doctor. Friday he did not care that I had lost 16.5 pounds in 2 months. He has never invited me into his office for testing of any kind and that last brutal testing was borderline thyroid an cholsterol. He does not care about me. I am high risk for cancer and diabetes, have celiac, never had female tests or cancer tests done, and have no history.

I have a wonderful doctor who did not even ask if my medicine was working. I abhor doctors and modern medicine. I rather be self diagnosed than go back there and be ignored. An assistant to take my history and then run the lab tests. I cannot even take my meds as I do not know if they are allergen free.