Just Checking In

[thejohnsongang]

Hello everyone....I sure have missed all of you and keeping up on all the posts. As some of you know my 16 year old daughter was dx in March with POTS. She has been having a horrible time and we have been working on getting her medications under control over the past couple of months. We went for her check up yesterday at JHH and she is doing ok. They added and changed some of her medications over the past couple of months and I think they have found what works for her. She is on midodrine 10mg every 4 hours, florinef .1mg daily, potassium 10meg daily, yasmin 28 daily, calcium supplements daily, periactin 8mg daily, claritin 10 mg daily, zantac 150 mg 2 x day. She has trouble with the heat, but otherwise her symptoms have been under control most of the time. But now thanks to the pots, her food allergies are back and she is being tested again as it is a new allergies we can't find. They also think she has EDS and are going to test her for it.

I went to my cardio on the 1st and was very upset. I talked with him about my disability case and he said he would not back me on it as he is a pediatric doctor. Even though he is a POTS doctor and he sees and treats adults he is primary a pediatric cardio and would not be able to help me with my disabilty case. I was so mad..as he has know for almost a year about me filing for disability and he waited until now to say he wouldn't support me. No wonder I'm having trouble....I also talked to him about some of my symptoms and he blew most of them off. He did change my beta blocker to coreg 3 x day, but the hair I'm loosing he said could be because of the florinef, but wouldn't take me off of it. I talked to him about being so tired and sleepy all the time and his answer was to get a job or volunteer somewhere. He know my limitations and that I can't be up and around for more than an hour with out laying down. He also knows that the heat has taken it's toll on me and I have to live in the a/c. And that was his answer. He actually said I needed to stop being lazy and get up and get moving around. My husband almost blew his cork. I sure did. I trusted this man and his treatment to help me and now he has did a 180 on me and saying the complete opposite. Now I'm looking for another doctor in my area for my pots. I have lost all respect for him. So is anyone has any info on a good doctor in the central maryland area...please let me know. I did ask my daughter's cardio at JHH if there were any POTS doctors for adults at JHH and he said he did not know of any. So much for that.

Anyway, looking forward to catching up on all the post and talking to everyone again. It sure has been hectic and I need it to slow down.

Hope everyone has been ok while I've been gone.

Nolie

[nadine]

I recall a very similar experience with one cardiologist I had seen for several visits. He was not experienced in EP and really offered little. He had very similar kind of comments. It is so difficult to find medical providers with knowledge in this area- good luck to you.

[Maxine]

Just when I thought I heard it all-------------------and yet another doc rears his ignorant head around the corner.

I say it like this, because of the way he is acting---------------HE DESERVES IT------

WHAT IN THE WORLD?!

I'm so sorry you had to deal with that. I know the frustrations of filing for SSDI, and it is very important to have the support of your physicians. This man had no right to talk to you this way. WHAT DOES HE MEAN-----LAZY? HE should know better!

Today I went to my therapist, and then found out I was 1/2 hour early. I decided to go to my car, then decided to drive a short block to pet supplies plus to get some doggie treats for my dog.

When I got there I decided if I go in there to get the treats, I probably won't make it to the appointment----------Although I have AC in my car, just getting out of my car the first time, and then going back to my car in the heat wiped me out. I had to just drive back. I go though these kinds of things every day-------just sitting up too long makes my speech slur because I can't get enough blood supply to my brain.

I know you deal with a LOT of physical limitations just like these, and it must have been maddening to head the word "LAZY".

If anything, we are anything but lazy. We fight every day to do what we can.

Shame on this guy -----------------I'm not sure he should be an MD.

I hope you can find another doctor who shows you respect, and treats you seriously.

I'm glad your kicking this doctor to the curb.

Good luck finding another doctor.

HUGS,

Maxine :0)

[corina]

nolie,

i am very sorry this happened to you and i understand you must ve VERY upset.

like you i was very sleepy during the day and most of the days just lay in my chair and slept (what a horrible way of living that is ). so i talked about it with my doc and he prescribed mehtylfenidat (brandname for ritalin). eventhough i am not officially diagnosed with narcolepsy it turned out to be a tremendous help and (most of the time) helps me staying awake during the day. my quality of life became much better.

maybe you can talk about this with your new doctor. as we are all very different and i'm not a doctor, this is just an idea to try to help as it helped me so much

wishing you all the best,

corina

[thejohnsongang]

Thanks so much for your response. I have had a really hard time getting my thoughts around what has happened. This is the cardio that I have trusted since last year and the one who dx me with pots to begin with. I am seeing a different PCP tomorrow for a general check up and second opinion. I will talk with him about the pots and about cardio issues I have. I just want to get a general 2nd opinion even though I love my current PCP. I am still on a search for a new cardio that accepts my insurance. I can see from my research so far that I will have to learn to accommodate a couple of hour drive as all the specialist are far away. Thank god for reclining seats and AC. I can't even go out of the house when the temps are as high as they are without feeling so tired after only a couple of minutes. I have been in the house for 4 days straight so far with out even setting one foot out the door. Usually I try to at least go out in the yard with the dogs for a couple of minutes, but it has been in the 90's here and I just can handle it.

Maxine...you hit the nail on the head about how hard we work to do things that are trivial to others. I know a flight of stairs is a workout that will put me on the couch with such bad tach for hours. I also know that shaving my legs is a no-no unless I'm in a tub and my husband is present. I also know that brushing my teeth is done sitting down and that I will never carry anything over 5lbs. Any exertion is horrible for my tach and bp. Even stretching to get a plate out of the cabinet is a no-no. I will get so dizzy and off balance and my heart rate goes sky high ( 105-130), and my vision gets all blurry.

My kids and husband want to go to the beach next month and we are going to try it. We decided to get a room on the boardwalk so I can watch the kids from my AC room during the day and then we are going to rent a wheel chair or electric wheel chair for me to use after the sun goes down so I can enjoy the boardwalk and spend some time having fun with the kids. Hopefully this will work. If not then back into the ac I go. But the kids and hubby will get a much deserved vacation from things at home. I just hope my daughter can take the heat. Her Pots as been very up and down. But she said she was willing to suffer for a few days to enjoy the ocean and beach...she wants to work on her tan.

We are going to go to the local beach (4 hrs away). Ocean City, so if anything happens we are still close to my doctors and my daughters doctors. Always better to be safe than sorry. I'm always afraid I'll end up in some hospital ER with doctors that have no clue what to due and they will make me worse.

Any way. Thanks for listening.