Back from Vandy & Recovering

[Poohbear]

Hello everyone! I'm back from Vanderbilt. I actually got back about a week ago but I've been trying to unpack both from the trip and my move and I had Dr appts every day this week. I'm very worn out.

Overall, my time at Vanderbilt was productive, supportive and helpful. I wish they could be my regular physicians all the time but they don't operate that way!

I'm trying a different medication but so far I don't feel much better and I'm really discouraged about that. One problem I'm having is that several of the meds they tried worked well at reducing my heart rate and blood pressure but overall I felt lousy on some of them. My local cardiologist has been so patient and I know he tries to understand but he just doesn't get it. He thinks if the med lowered my heart rate then I should stay on the meds. His response is "you will have to learn to live with side effects". I can tolerate some side effects to a point but many of them I just can't tolerate.

I tried to explain my philosophy which is.....if the medications after a few weeks of adjustments, leave me with side effects that are so bad that I still don't have the quality of life I want (ie...going back to work, able to drive etc) then I would rather not be drugged up.

He took it to mean I was saying I would rather lay around and be lazy. That's NOT what I'm saying. I don't want to be lazy and I'm not a lazy person. If the meds make me feel so lousy though and I know I can lower my heart rate by resting frequently throughout the day then why pump my body full of chemicals and drugs if they aren't going to improve my quality of life?

Do you guys understand what I'm trying to say? Any advice on how I can explain this to my local Dr?

I don't know how much you guys want to know about my experience at Vandy but I'm happy to answer any questions if you have any. I'm so worn out right now though that I'm not up for posting a lengthy detailed report but overall it was helpful in many ways but disappointing in the sense that I didn't find the "miracle pill" for me (that's certainly not because they didn't try though!!!)

Everyone was exceptionally nice and supportive there. I know we are all different and have different experiences but I would recommend the research facility to anyone who qualifies and has the opportunity to go.

I'll try to catch up with the posts since I've been away the past 3-4 weeks.

Glad to be home and back on the forum!!

Poohbear

[dizzygirl]

good to see you back poohbear!!

I am glad that you had a good experience at vandy!

any info that you want to share would be nice to hear...

I am in the process of applying to vandy.. I am gathering up medical records.. and filling those forms out.. so I am hoping that in the next few weeks I can get the ball rolling w/ that...

My question is.. what exactly do they do there? do they do testing on you? monitor you? How exactly does that work..?? and with meds How do they work that? do they try meds that you were on or have been on a t different doseages and med combo's??

Just curious..b/c the sites I have looked at dont quite explain what they will be doing...

take time and recoop from your trip and stuff...

HUgs to ya

Linda

[lalalisa]

Poohbear,

Welcome Home!! I'm glad you've made it home and I hope you get some rest this week.

I do understand what youre saying about the meds and I hope the bad side effects go away.

Thanks for letting us know youre back.

Lisa

[mom4cem]

Hi Poohbear,

Glad to hear you fared well during your trip and have gotten some help. I hope something that they recommened will help you. I understand what you mean about the meds. Being out of it from medicine that does help keep your rate lower is nice that it keeps your rate lower but it still keeps you from going out and being a part of life. Maybe there is a bit of tweaking that can be done to get the side effects to be tolerable.

Look forward to hearing of your experiences. Rest and relax

[JaneEyre9]

I know just what you mean about the medicine. I was on a dose that kept my heart rate at 65, but i felt better on less med when my resting heart rate is 80. Go figure. Sometimes the side effects are worse than the actual symptom they are trying to treat!

Kristen

[joanie]

With my teenager, we don't stay on a med anymore unless it overall makes her feel better. I have heard that some docs think that if they get the rates in line, they have done their job, and you should keep it up. You're right, they don't get it, and i wonder if they ever will...Keep trying things...

[Dizzy Dame]

Hey there Pooh!

I was wondering where you scampered off to

I'm so glad to hear you had a good expierence at Vandy, even if you didn't find the miracle pill. I'm slated to go there in January and would love to hear more about your trip when you feel up to it.

As for your doctor, the way you explained it to us is how you may want to explain it to him. Sometimes, if I need to tell someone something difficult, or complicated, I write them a letter so I can say things exactly right. You could even read the letter out loud to him if that'd make you feel better. Bottom line though, is it's your body, not his, and he needs to understand that you make the final decision about what chemicals you want to put into it.

I'm glad you're back girl, we missed you

- Lauren

[morgan617]

Welcome home pooh, and I totally get what you are saying. My pcp seems to understand this concept, but not every one does that's for sure...morgan

[Sunfish]

welcome back pooh. as i think you know, i TOTALLY get your frustration re: it being a good experience but then coming home to "what now". my mom & i were talking about the exact thing today.

for the others who are wanting info on the vandy experience, while waiting for pooh's post on more of her experiences you may want to read my (really long) post from after my trip in may we were, for the most part, in similar studies while there. it's at:

http://dinet.ipbhost.com/index.php?showtop...bilt+chronicles

and yep, the connundrum of meds "helping" in one way but you feel worse or at least not really better is SO confusing & frustrating...sorry i don't have much better advice there other than to trust your body. except that SOME meds, depending on the med & what the side effects are, can get better with time. so maybe it's worth waiting things out for at least some amount of time?

hope you're also getting settled into your new place pooh.

melissa