New Cardiologist Today

[Becia]

New cardiologist appointment this morning was fast, furious, and kinda shocking. As of right now, I am his most severe POTS case. While he isn't saying my cardiologist that was in charge of my care (the gentleman who passed away in January and his successor) mismanaged my care, he's shocked at how everyone was the definition of insanity: doing the same things over and over, expecting different results. He was actually kinda miffed about how Cleveland treated my care, with not offering more suggestions, and by saying it was all in my head in my reports (the first transcription from the doctor mentioned somatization/conversion disorder being in the diagnosis, but these were later debunked by my autonomic TTT which confirmed the POTS, but they kept saying it was from deconditioning). I told him with in regards to Cleveland, I thought they did okay, although strenuous, but I kinda wished there was something else they could offered as well, but my previous office had made it clear, they were really not interested in changing my therapies because "You still pass out, why would you want to change your medications?"

He also wondered why since I was passing out all the time why a pacemaker was never given as an option, and I told him that my cardiologist said it was only beneficial for those with bradycardia, and with a HR of 115 just sitting, I was far from that, never mind when I'm standing and it creeps towards 170 or more. He was shocked that he also put me in a wheelchair, but understood its a safety thing and agreed with how I use it at this time. At least with my working out, I'm doing something right, because some is better than none, but with my out of control tachycardia, going for a stroll around the house is enough to have me kissing tile. Was reminded to listen to my body, and get down the moment I feel symptoms hit (they do kinda frown upon sitting down in the middle of the walmart parking lot though!).

So, echocardiogram on the 30th to check my heart structure (he doesn't think it's weak, but wants to gauge changes since my last two, and double check its strength), see him in July unless anything changes with the seasons. No driving clearance. Start counting my outs again (I just stopped because they can be so numerous), taking care of my body, come back in July after he's had some time to get all my files from everyone, review it, and see if there's a pattern from there to now with everything (he even is asking for my ablation records, in case something got screwed up there, since I have been told by one hospital its possible the ablations set this off, like it was underlying). If things get too unbearable, come back sooner, and he will see about maybe changing things.

I don't want a pacemaker, but if it can get me to where I can work and have a life again, bring it on. July will be one year since I last drove, since I last had a job, and its just so overwhelming with everything. I know POTS is in my life now, its time to get this thing managed better. At least so far he doesn't sound like he's backing down from the challenge, I am currently his worst POTS case he's ever seen.

Just had to share with people who know how it feels.

[kayjay]

Becia- I don't have much time for a long response. Just wanted to let you know that I do understand and I'm sorry. Doctor visit days are difficult on so many levels. Sounds like this one was a brain full.

My mom has a pacemaker. She had no choice because her heart was stopping.

Sorry I have no words of wisdom or real advice for you. Just wanted to let you know I can empathize.

[kitt]

A pacemaker can't help tachycardia. It paces the heart rate when it goes too low. (Bradycardia)

Why is he recommending a pacemaker?

[Becia]

He gave a specific name for it, but it apparently helps with tachy getting out of control. I wish I could remember the name, I was furiously typing info out as we were talking, and it was easier to type pacemaker than the long name. I know I've heard of some pots patients having one implanted. It was a weird convo, because I hadn't heard about it until recently, and I still don't think I'm quite there, but he is saying I was on beta blockers before my ablations, and since I didn't respond to them like they had wanted, they wouldn't work now in my case either.

This visit was really okay, except for how I felt, which is kinda yucky because I've got a bit of a cold or something going, I'm worn out from yesterday (Monday is a recover day from church), and I had to travel about an hour to this appointment (but now that I'm established, he comes to my town every other Monday, so now I can see him here, unless there's an emergency). I came home and just crashed.

[Becia]

ICD was what he suggested I believe, he just used the long words for it (Inplantable cardiac defibrillator).

[kayjay]

Pacemakers have come a long way and my mom's does help tachycardia. It won't let her heart beat above a certain number. They are pretty fancy these days.

[Becia]

That they have. My mom has one for severe bradycardia, and she has three leads that control different parts, and it's just all sorts of technical, lol.

The couple things I wish I did get out of this visit were a script for Iv hydration therapy, and some sort of cardio rehab to get back on my feet a bit better, but I can understand his hesitance to jump right in without knowing fully everything that has gone on since my diagnosis. I have been told to contact if everything becomes worse, and I think with the summer getting ready to start, I can see this happening, if I keep getting sick like I am right now, I can see this happening... Just back to one day at a time.

[kitt]

A defibrillator is a different issue. If you can, think to ask for your doctors notes from your meeting. It helps me to read what the doctor writes in his/her report.

I was told a few months ago at Mayo in MN by a cardiologist there that I should get a pacemaker for NCS, but it WOULD NOT help with tachycardia. I take her word on this. Ironically my cardiologist here is a surgeon and puts pacemakers in, so I'm in good hands.

I know of no current research that suggests a pacemaker for pots. Years ago they put them in pots patients but no longer.

Hope you get help with your fainting issues. That's the important thing.

Best,

K

[Katybug]

I think I've read on here about a newer model of pacemaker that can control tachy but it was a specific brand and model. I'll see if I can find the thread.

[looneymom]

Hi Becia,

Glad to hear that your appointment went well. Was this the appointment with Dr. Grubbs? I've heard he is really good. BTW I think now that Tyler and You both belong to the Most Severe POTS Patients Club. However, misery loves company and I am sure there are others on this forum that could join this club. It's nice to have a doctor that wants to keep up with you and try to figure out your next treatment plan. Take care and keep us posted.

[Becia]

Unfortunately not with Dr Grubb, but apparently according to my power of attorney and friend who was calling doctors offices when I was in hospital, I am still in line to see him, just haven't gotten a date yet. I told him yesterday, I will be keeping that one, because we fought so hard for it.

This was a new local guy since my other passed away, and the office had started to really give me a negative vibe about everything. My gp thought highly of this gentleman, so I thought since I still need to have a cardio person in my repertoire I would give him a try. He was really nice, but shocked at how everything had gone about. Wish I could have gotten some "yes, were gonna do this" rather than waiting, but it do understand why, and I'm fine with it. I initially said no more tests, but an echo isn't bad, I've had two, and if this shows my heart is fine enough to start a cardiac rehab program, I'm all for it.

[kayjay]

My mom's pacemaker won't let her heart go above a preset rate or below a preset rate. When she first got it they had it set too low. Anyway it must depend on what kind you get or need. I asked her about it this morning just to make sure I had my facts straight.

[IceLizard]

I know it's frustrating to have to take a wait-and-see approach. But, at least it sounds like he is willing to take you and your condition seriously and help you.

I also know that ablations can make POTS worse. I hope it can be managed so that you can get some of your life back.

[Becia]

Yeah, I heard that too, and that's why I asked after my diagnosis if the ablations possibly set this off, that I've had it for a while. One doc said yes, one said no. All I know is I feel everything, so it's unnerving, the meds they had me on to control the pvcs made them worse (I believe they were beta blockers), and it was miserable.

He seems Iike a really nice guy, and he def seems involved in getting me better, so that makes me very happy at this point.