Another Round of AZOOR testing at Vandy - Day 1 (yes, another day coming)

M

music-city-missy

Well-known member
This is my note that I posted on FB for all our friends and family - it's long but thought I would share with you all too. The short of it - doesn't appear to be any changes but only more tests will confirm.

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We had another trying day at Vanderbilt Eye Institute. I know we should be happy that we have such a 'wonderful' place here and that we have the foremost expert in the world on thsi very rare disease. But I can't help but really dislike the place and that is putting it mildly.

We go back Aug. 3rd for more tests though the prelimary tests today didn't show any real change. But because Kristen feels there was a change in how she sees things and described it to the doctor, she wants to run additional test. In the meantime, she's back on the six week trial cocktail that is $1k plus before insurance. No - there is no evidence or proof this cocktail does a darn thing BUT the expert doctor is doing a study on it and hoping to get her paper on it published. It's a six week round of Valtrex and prednisone.

We got in two weeks to get two more tests done. One that according to the doctor, I SCREWED UP.

The check in process is quick and easy. It's once you go back that things start going badly. Whereas I feel most medical facilities have made drastic improvments in scheduling and such, EVERY SINGLE time we come here it's bad. We're there for hours and hours and hours most of it waiting not doing a darn thing. They have tvs, wireless and coffee but still. Today the wireless didn't work and you can't get a decent cell phone signal either. TV's are set either to try and amuse the roudy young kids that's parents aren't controlling them or on generic CNN.

Our appointment for the testing as at 2:00 pm and I would say that she was called back for the first general testing was done pretty quickly after we went back to the first waiting area - maybe 5 minutes. Then we moved on to the next waiting room. We had to wait a little while before she was called back for the visual field test. Came back and waited again. Called her back to put the drops in her eyes and then back out to wait again. And we waited.

Our appointment to see the doctor was at 2:50 and we were through with the other tests well before that time. We were finally called back to a room about 3:05 - 3:10. The doctor finally came to see us at about 4:10-4:15. By that time Kristen's ADHD was driving both of us nuts. She finally laid down on the floor. When the doctor walked in and saw her, I commented that we had been waiting a while and that is when she let us know that it was because of PEOPLE LIKE US that she had to work in (wrong, when I called they said they happened to have had an opening) and that there were people who had been waiting longer than us. WOW - what bedside manner. She's a teaching and research doctor - I sure hope she's NOT teaching bedside manners!!!

Then after looking at the testing that was done, she said it was my response to her email telling her staff to get us worked in immediately that messed up things and caused them to not do the test SHE had ordered. Her email came after I had called yesterday and gotten an opening for today. All I did was to respond to let her staff know that we were on the books for 2:00pm for a visual field test and 2:50 to meet with her. I did not specifiy what type of visual field test. Her staff should have confirmed that it was for the type of test the doctor wanted. But it's MY FAULT.

So now we have to return on Aug. 3 for that test and another one. Kristen doesn't want to go and says she never wants to go to this doctor again. I can't say that I blame her but this IS the leading expert in the world. We've got two weeks to settle down.

When Vanderbilt called and asked us to complete a survey on their services. I told them then that her bedside manners were horrible. I've seen her at Costco talking to the guy that works the front door and has some physical challenges and she seems so nice and concerned about him. She takes time to sit out on the column with him on his break and talk to him. And she responded withing minutes to my email yesterday and waved at Kristen when she saw us in the waiting area. But she hadn't changed one bit from a year ago and might have even been worse.

I'm tired and it's not fun going through this. Not knowing whether this 'thing' is active againand whether or not your child is going to loose more or all of their sight is a very frustrating and depressing thing to be going through. She's only 17. While it's horrible for anyone to loose their site, it's particulary frightening for a young person and for a disease that has no known cause, no reversal, no known treatment to stop it, and no known cure.

Sorry for the long note but I'm frustrated and needed to vent and so many people are asking.....

Thanks for all of your prayers. Hopefully this will all come down to no major changes as it looks might be the case after today.

 
Hopefully the awful doctor has put all her energy into diagnosis and treatment

(and research, as is often the case) rather than bedside manner. She should know how important that is, but for now, it sounds good, and focus on that's what is important. Great news, so far!

I once had a GP that was absolutely tactless and rude. I hated going there and about the 3rd time I did, I was going to tell them that would be my last day with him. To my surprise, they smiled and said, "Dr. P has decided to go into reseach and we've transferred your records to Dr. X". They said it with a big smile, which let me know that it wasn't ME, but him. Everyone was glad that he was gone.

It just shows you that lots of times if people have one talent, they don't have another. It sounds like this specialist of yours is probably a GREAT researcher!! ;o) Hugs.

 
(((MCM)))

It is good that you have written to us. It helps to share anxiety as well as frustration -- and helps when you have to confront this difficult person again and again. They say to picture these people in their underwear -- just don't let her attitude and bad manners get in the way of your getting what you need, and that is the skill she must have, with all the accolades. Bless you both for having to go through this -- it can be a good lesson for Kristen too, and hopefully the outcome will be great. My prayers are with you!

 
What a tightwire act you're on, M. Having to put up with such rudeness, but needing the expertise

of the doctor! Please keep these commentaries and later...when Kristen has moved on to another doctor, consider providing them to this doctor. I think sometimes they (doctors) get so wrapped up in the treatment process that they fail to see that patience and explanations are often more required than medicine. At least the added stress of dealing with a "smart" idiot is removed from the equation.

Lar just had his third ER visit in 12 days (blood pressure spiking all over the chart) and THIS last ER doctor, after changing Larry's medication yet again, went on to complain to us that "he was board-trained and certified in trauma treatment and here he ends up...managing medication." So sorry to have not made your evening more thrilling, Mr. ER MD. Larry's BP spikes can cause him to lose his eyesight. Sorry if that isn't thrilling enough for you.

After he left the room, I told Larry we should attach "squibs" to him for the next visit. Squibs are used in movie special effects to simulate a gunshot wound. Pasted onto the body and fired off by an electronic trigger, they respond by bursting blood all over the place.

Maybe a few of those will get Dr. ER's "I'm qualified for trauma and all you give me is blood pressure spikes" attention?

 
IT JUST HIT ME - I AM DOING THIS ALL WRONG - plan of attack!!!!

Yesterday before I went to the doctor's appointment I was at the las Lunch and Learn series being held by one of our 'famed' local chefs, Martha Stamps. It's been a wonderful six week series where she has tried to educate folks about local food, local farmers, and this last one was on faith and food. Unfortunately I had to leave before the conversations ended but I think more than we knew, Martha and I share the same feelings about food and about it showing love and saying things you can't say.

That being said, it hit me this morning as I couldn't sleep that when my aunt found the specialist up here, every time she came, we made sure she took some kind of treat to them - usually a cake. Mother would bake them and send up with them. I would bake them once she got here. No matter what, until the end earlier this year 10 years later, that doctor and his whole staff all knew her by name, took her calls, and did everything they could for her. Not that they wouldn't have any way but she ha made herself stand out and endeared them to her.

I am going to find a way to do that to this doctor. Her staff is fine. Rocky, they guy we are seeing first week after next for the horrible tests is a SWEETHEART. She is from another country so I have to figure out what to bake but I am going to bake up a storm befoe the next appointment. I am going to MAKE her be nice if it kills me. Cooking shows love - you cannot really cook without putting love in it and love changes everything, right?

PS - since I couldn't sleep - did some more internet searching about AZOOR and according to Moorefiled experts in the UK who seem to be the other place that has done a good bit of research - AZOOR typically reverses itself in 1 to 3 years after it stops being active. I am going to try and contact them and see what I can find out from them.

 
Good plan. I used to bring rum cakes home to take to my bank. And occasionally, I'll take

a raspberry cream tarte for my doctor, or a small vase of flowers....she loves both. I don't do it to bribe her, I just like her and I appreciate her special attention. And with the bank, it's just a reward for treating me with special care.

Sometimes people who don't like their jobs, or who are just generally uncaring, unfriendly....whatever...need to be acknowledged anyway. Linking that acknowledgement to you, will almost always have very positive effects.

BUT, you need to do some bribing. Sometimes, that's just the way doctors and lawyers are. They're taught to play gods in school. Don't get bent out of shape, just keep cool and go through the process.

It's not the doctor that is important, it's what she can do.

I had to verbally abuse one doctor when he snapped at my husband that "of course you're going to have to have your leg amputated, that's what I said on your last visit. Now we'll schedule that for next week." There's bedside manner for you. Poor H was emotionally distraught and speechless and this A.. was yelling at him. I told him he would not be seeing us again, I found another doctor, and 3 years later, H still has his leg.

You've already started with the best for your daughter's condition, so just look above the doctor's behaviour. As long as she does good work, that's what you need to care about. YOu can put up with anything as long as your daughter fares well, can't you? You have enough stress without worrying about a doctor's manners.

 
Amen. Excellent suggestion. Also, try seeing if there is any funding available for this

research.

An aquaintance of ours living in Washington DC was informed she had Herpes C when she donated blood. It's at a nationwide epidemic level, so she received research-based treatment at NIH and paid 1% of the $1700 monthly treatment (= $17).

Maybe there is funding available for you since it's for research? Can't hurt to ask. If it's that rare, then the doctor wouldn't want to lose her research "material".

 
Great idea. And remember, if what she suggests at any time feels wrong to you

make sure she knows it. Especially nowadays, with doctors having to see so many patients per hour, they may operate on a 'one size fits all' basis. It doesn't, and it's up to us to monitor for this. And even if she is 'the foremost expert in the world', never be afraid to ask for another opinion. I come from a family of doctors, and though I trust my siblings, I know not to trust a doctor just because of the degree. Best of luck!

 
I love both your ideas.

It's a good idea to let the doctor have the commentaries - sometimes they are working so hard that they don't even think of what effect they are having on the patients. I think this is a problem that women in general have. I once went to a seminar (mind you, this was 25 years ago) where they said that women were so driven to show that they could succeed in business that they tended to walk into people's offices and start talking business without any social preludes. I was horrified to realize that I did this. I changed my ways, and things improved a lot. Some years later, I was working for my doctor in her old-age home, and she asked me how I managed to get on so well with her nurse. I passed on this tidbit, and she thanked me later - said it made a huge difference.

As for your ER doctor, I hope that you pointed out the error of his ways to him. I love the idea of the squibs! I hope that Larry is doing better.

 
During an annual eye exam, the optometrist discovered serious damage to my Mom's

eye, and he rushed us to an expert eye doctor in the area. This eye doctor was mean, rude, and yelled at me and my mother. I was afraid to challenge him, as my Mom really needed his expertise (so I thought). On my next eye-exam visit, the optometrist asked about my Mom, and I told him how unhappy we were the eye-doctor's manner. He said "I'll take care of it".

The next time we saw the eye doctor, he was all smiles, dripped honey when he talked, and showed so much concern for our well-being. I went back to the optometrist and asked him what had he done to cause such a change? He smiled and said that he spoke with the eye doctor, and told him that he would stop referring patients to him if he didn't improve his bed-side manner, and he would tell other optometrists to do the same. It worked!

 
Thanks for the laugh! I'll try to remember that one - wonder if the local acting supply has squibs?

You know, I have been through a lot with doctors, ers, and such since last fall when my aunt started going downhill. And for the most part, most people in the medical field that we have dealt with over the last several months have been good, caring people. It's just the one or two bad apples out there and if they can't be caring, I don't think this is the field for them no matter how smart they are.

 
REALLY ? Wow, this is a herpes drug that they are using

it's like $1,200 before insurance and $300 after. We aren't hurting even though I'm still not working but that is a chunk of money.

 
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