JUST HAD 1ST VISIT WITH DR GRUBB

[danelle]

Hi all, I finally got to see Dr. Grubb on Wed. We drove all the way up there from NC. I must say that I am a little disappointed-alot actually. Dr Grubb was great but let me explain(or vent):

My appt was for 9:30. When I got there, they told me he was already behind (which I had anticipated thanks to all of you for letting me know in advance), I thought "OK no big deal, I am ready for this and am willing to wait ALL day if necessary to see him": because I knew I would get my turn and be able to find out what I wanted to know.

Well, I got to see him at 12, which was fine- I was just glad to see him, I was so excited. He apologized and told me he had to admit one of his fellow dr's so he was a little distressed(which is completely undertandable!) During our visit he was interrupted numerous times by the nurses and I could tell he was getting annoyed-nonetheless he was very cordial and continued with my exam. He did a quick echo and did TONS of education on the computer about POTS(which I had already researched myself-thanks to this site!)

The bottom line-he officially dx me with POTS, told me I had some mild MVP, mild mitral, pulmonic regurg and mild aortic insufficiency. He did ask lots of questions but I had taken in a 3 page list of sx and questions. Unfortunately, we didn't go over all the sx or get to the questions because as soon as he was completing the education process, the nurse came in once again and said he was now 6 pts behind. He wrote me a Rx for midodrine and for florinef (I am already on atenolol and klonopin) and then concluded our visit quickly.

I went out of the room and asked him if I could give him my list of things and he put them in my chart. I left feeling worse than when I went in. I went back to the hotel, barked at my husband and kids and then left, found a quite corner and cried until my son found me.

I just felt like I hadn't gotten any of my most important questions answered and I was left hanging. Later that afternoon, I wrote down some of the questions, took them back to his office and left them with the secretary but I still don't recall which ones I left and what I forgot!!!

Not only do I have POTS but now have some regurg and aortic insufficiency(which he really didn't talk about at all other than to tell me not to worry about it) I feel like I am going to die. I asked about my arrythmias and he told me he didn't know if they were serious or not until he could see them on a monitor but didn't get me one. We discussed several meds in the education time but he just handed me these 2 prescriptions and that was that.

I feel like maybe my trip was a waste of time and LOTS of money. I don't know when I will get back, I have so many unanswered questions and now my anxiety level has risen greatly-which we all know we don't need!!!

On our way home yesterday we stopped at a rest area between Dayton and Cincinnati and I had been feely pretty rotten most of the morning-well guess what happened?! I got out of the car, felt kinda dizzy, but no more than on my bad days. I get to the bathroom and start out the door when I felt faint, I felt my heart racing and quickly found a place to sit. I went to the car-by the aid of my husband- and took extra atenolol and klonopin-it took forever to work but finally did somewhat and we managed to get home at around 7 last night- GOOOD GRIEF!!!!

I have so many questions I don't even know where to start-any suggestions? maybe you all can help answer some I don't know- I just feel horrible and feel like the trip was a total washout!!!!

Thanks for letting me vent!!

Danelle

[michiganjan]

Dear Danielle,

What a horid trip and Dr. appointment.

Getting new information that there are more things wrong than you previously knew is upsetting enough, but to get that information dropped on you during an appointment that you were depending on to help you digest the questions you already had is double misery.

That Dr. Grubb said not to worry about the findings of the test I would think is somewhat reassuring.

You still had a lot of new stuff dumped on you on top of new prescriptions!

However, there is much you can do for yourself now that you have this new information.

Do you have a good Doc where you live? If I were you, I would look for a cardiologist/electrophysiologist near home. I would find out if he or she has any understanding of POTS. Then I would make the earliest appointment I could get. And I would ask if they could put me on a cancellation list, and if they have none, I would call every day until I got in. And take Dr. Grubb's test results along. Ask the cardiologist to intrepret them for you. Tell him or her what meds you are trying and ask them to monitor your treatment. Also ask the question about the arrythmias possibly being dangerous. If you need more tests to answer this question, insist on getting them and soon.

What has helped me the most to stay calm while I live with POTS is knowing all I can about my own body. I have had many heart (and other) tests over the years, and I envision more in the future, to make sure I know what's going on.

You will feel better when you have answers. I always do.

Get those test results from Grubb's office. Call and ask and call and ask and call again and again until you get them. Be the squeeky wheel.

As you find answers, you will find peace. Now get going!

Michigan Jan

[EarthMother]

What an amazing trip. Many of us, myself included could not make that kind of road trip. Congratulations on surviving the whole ordeal, you are very brave indeed.

One of my 'best' POTS appointments was with a cardiologst. He knew very little about POTS and didn't think twice about getting on the phone and calling a colleage. There were no miracle answers, lets face it this website has more information than a team of mayo residets. But what he did give me was a clear understanding of my arrythmias and other cardiac issues that really worried me. He also gave me confidence that I would improve. Somehow. I had pretty much given up on getting better. And it's that verbal affitmation attitude that helps me the most.

Manifest your future. Say to yourself .... I have a great doctor in my neighborhood who supports my healing vision. It may be hard to say at first because your mind may be use to playing other tapes. But keep saying it, every day and watch what happens.

I'll keep a good thought for you.

EM

[goldicedance]

Oh, Danelle...I feel so bad for you. You had such anticipation of your visit only to find out that you did not get all the attention you deserve and need. Have you thought about an appointment at the Mayo Clinic? While the work-up takes about 3-days, you generally feel that you have gotten a good dx, quality time, and some good ways to progress.

I think that some of the heart things he thought may be normal in the aging process. But, please go to a thorough cardiologist--one at a teaching hospital is really best in my way of thinking.

Take it easy with the midodrine and the florinef. Drink plenty of fluids.

Feel better!

[Merrill]

Danelle--I'm sorry you were so disappointed--it sounds like a rough trip, but it also sounds like you handled it beautifully. Your patience in that waiting room is admirable indeed. The stress and anxiety you now feel is a natural reaction to all you've been through--including that loooonnng car ride! But I agree that now it's up to you to channel that energy in healthy ways and begin looking for health care providers in your area who can help you to feel better. (In addition to conventional western doctors, I'm thinking acupuncturists, massage therapists, nutritionists, perhaps even psychologists, who can help you get your body, mind, and soul back in balance.)

I think everyone's advice here is on the money, especially M.Jan's advice to find a good cardiologist/electrophysiologist in your area who can pick up the ball Dr. Grubb dropped and run with it, with you alongside. S/he can put you on a holter monitor for one day or three to find more about these arrythmias (mine showed a couple thousand of them in a 24 hour period--which seemed a lot, but I too was told by three of the top cardiologists at Northwestern that they are of no concern...)

I have to say, I found it a bit curious that he gave you prescriptions for both florinef and midodrine. Did he tell you to take them both at once? Or to try one and then the other for a number of weeks each to see what helps you most? (My own doctors spoke of trying me first on midodrine and then on florinef if that didn't work... but definitely not to take both together. I've chosen the no drug route for now; I get along well enough on the low-tech, no drug therapies, and since I've got another IVF attempt this month, drugs are out of my picture for now anyway.) Maybe others here on the board can help figure that piece out...but really, a good cardiologist is your best bet.

Good luck--hugs--and I hope you feel better soon!

Merrill

[morgan617]

what a terrible experience. i am so sorry. most doctors will tell you if they think your problems are life threatening. but it is a good idea to see an electrophysiologist as he or she will address not only the valve problems, but the arrythmias too. i know heart concerns can be very scary. this is just a scary disease as it seems every day there's something new to contend with and so few doctors that deal with it. the best thing to do is get on the net, find out all you can and learn to be an advocate for yourself. knoweledge is power and any doctor put off by what you know is not going to be much of a help to you. find someone open and willing to listen and learn. it is difficult, but not impossible. good luck and hang in there. morgan

[Sak]

Generally speaking, unless you have some major cardio damage, arrythmias are harmless; the heart exhibits umpteen variations over the course of a day. It's not a machine; it's part of a living biological system that's naturally dynamic.

[briarrose]

Please list all of your questions. We are not doctors but many of us have been through the ringer, so keep in mind that it's just advice and we may be off base but you should get a general idea. I'm sure everyone would be happy to help out.

I'm sorry about your appointment, I know that you needed information. Don't give up and chin up, let's see if we can help.

steph

[Deb]

About the midodrine and florinef puzzle. I was started on both, too. My blood pressure kept getting really, really low that the docs were afraid of a stroke. I'm 46 and not as young as you. I really didn't feel any better after I started both of the medications, in fact I felt a lot worse. However, I felt remarkable better about seven days after I started the medicines. The doctors said it was the florinef and the added sodium because I was finally keeping the fluids in my body instead of excreting them through my bladder. I will never forget the day I started to feel better. It was the first day in weeks that I was able to take a shower without someone holding me up, or having to sit in the tub halfway through. It was wonderful. I don't take as much of the midodrine now. I think I take about one-third of the original dosage. The florinef works very well for me.

Good luck Danelle, I'll be thinking of you during the week and hoping you'll start to feel better.

[danelle]

Much thanks to all of you!!! You all are so wonderful. It felt good to check the site and see such responses and support. It means more than words can say.

Jan, I do have a great cardiologist who I have been seeing for 17 yrs but was unable to dx me with POTS. He is unfamiliar with it-maybe now he will do some research on it. Actually the only test Dr Grubb did was the echo. He mentioned the regurg and insufficiency from that and it was also listed on my records from my cardio here. I was just never told. Maybe it isn't anything to worry about??? But I am a chronic worrier and that is putting it mildly. The MVP issue actually came up by me. I was told 17 yrs ago that that was my problem but then about 7 yrs ago I was told No, I didn't have MVP that I had inappropriate sinus tachy. I saw our local EP Dr and he is useless and very scary. I wouldn't let him work on my dog. Even the nurses that work with him say to steer clear. So I got my Dr to send me to Charleston where I saw a specialist on SA node ablations and he is the one who brought up the whole POTS thing. Long story!! 17 yrs worth in a nut shell.

The staying calm part is the hardest for me but I know it would be best. I have underlying anxiety and panic attacks (which I know now are normal with POTS-Dr Grubb explained that to my husband too) I take clonazepam for it but it is still there-always.

I will call and get an appt with my normal cardiologist soon and go over things with him but I know he is tired of seeing me. And I will be very persistent, that's the only way they listen!! And then sometimes that does no good. I have really gotten to where I find it hard to believe Drs anymore, you hear so many different things. And being a nurse in the hospital-actually seeing mistakes and knowing what goes on doesn't help either.

I will be searching for the peace, and I know that I will find it-hopefully soon!!

EM, You are so right!!! I have learned more from this site than anywhere else or from any Dr that I have been too. No one knows our bodies better than we do! I will work on manifesting my future and thinking positive thoughts!

goldicedance, I haven't been to the Mayo Clinic-can they do anymore for me??? I guess I am willing to try but I am really getting burnt out on Drs and quickly. I'm not sure what to do at this point. Maybe the leaking and insuff. is just part of the normal aging process. I am 37 and Dr Grubb did say that he thought I was already showing signs of meopause which will intensify our POTS-URGH!! I haven't started the meds yet-I'm afraid to. Heck, I've gotten to were I am afraid of everything!!

Merrill- I agree with the "holistic" approach to illness as well. I am so good at preaching it to my family and patients but am terrible at practicing it. I know that that is a must in order to find any balance in my life at all. Right now I am on a rollercoaster ride that doesn't want to end. Thanks for telling me about your irregular heartbeats, that brings me some comfort. Dr Grubb did tell me to try the Midodrine first because it would work faster but I am reluctant to do so because being the worrywart and nurse that I am, I look up all the side effects to everything before I take it(I have had bad experiences to meds in the past). During some of my "episodes" my BP has a tendency to go high sometimes 140/100 and I just don't know what the med will do. most of the time my bp stays low though 80-110/48-70. Don't know what to do!!! GOOD LUCK with the IVF, I so hope it is successful for you!!

Morgan-I try and learn as much as I can about my problems so that I am not"ignorant" to what is going on-this really irritates my family though. They think I should just take my meds and do as the Dr says and quit looking into things. That is just not my nature. Another reason I guess I am very nervous about the rhythym problems is because I have never been able to catch the bad ones on a monitor and my father died with heart disease(I have a very strong family hx-dad had his first bad MI at 37 yrs old, his sister at 38)

Sak-thanks for the reassurance about the weird heartbeats!! I hope you are right!

Deb- I think I may try the florinef first-that is if I can convince myself to do anything med wise-boy is my family angry with me-and I can understand it but I am just scared. I am glad to hear that things are going better for you, there is nothing worse than our bad days when you feel that they will never end and you will feel atleast half human again. Thanks for thinking of me, I will think good thoughts for you as well!!

Briarrose-I will list my questions shortly-let me see if I can find my old list! Thank you for asking for them!!

Hugs, good thoughts to all of you and may we all become POTS free someday!!!!

Danelle

[briarrose]

Danelle

I will be watching for your list of questions and I'm sorry that you didn't have a good experience with Dr. Grubb.

steph

[Jackie]

danelle - I'm sorry the appointment was not all that you had hoped. I can relate too well to this type of feeling. The thing is, at least for me, that our hopes rise so high because we realize we are finally going to see somebody who "knows"...somebody who totally understands and we are going to get on the path finally to getting all better. I too have cried after appointments...I try and try not to get my hopes up but they do anyway only to be dashed when there is no magic answer coming back. Trying things is scary. At least that is how I feel. I really, really liked Dr. Grubb but I didn't even get the education session you are discussing here. I think he is way too overwhelmed with patients and I feel bad for him.

The up side is that you know it is POTS. Truly you know and that helps to the extent that knowing can help. I am in your same boat...have diagnosis...now what. You sound a lot like me except I don't have the mitral regurg, etc. (By the way, I'm only a medical transcriptionist but many people have slight regurgitation of their valves) and it shouldn't be anything to worry about...only in severe cases of regurg is a valve replacement required. Actually, way before POTS and NCS and all of these titles were on the scene, MVP or mitral valve prolapse (which is mitral regurg) was one of the main dxs handed out as an explanation of symptoms and does in fact play a role from articles I have read. (Please anybody correct me if I'm wrong here). Don't be scared. That is the hardest thing to do and the easiest thing to say.

I'd love to talk to you by e-mail myself. I was dxd last fall and given atenolol and florinef by Dr. Grubb and never started the florinef...looked forward to discussing that with him this month but appointment got cancelled. I too have a lot of questions I want answered and don't where or how they will be but believe they will be eventually and yours will be too. Hang in there and focus on the positive...you have the diagnosis and you have some meds to try. That is a starting place. (We have a lot in common too because I am on beta blocker atenolol but Xanax instead of the Klonopin). I am functioning albeit not 100%...it isn't easy and I have bad days but I try so hard to look on the bright side...I'm not lying on the couch with my heart racing and flipping thinking I'm dying anymore while the moments of my life slowly tick by so I guess we call this progress!! I'd be happy to talk to you anytime. Keep us up to date as you try the meds. I want to know more myself before I try the florinef and am curious about midodrine instead myself.