Thursday, January 18, 2018

The heart guy...

Today's cardiology appointment was my BEST EVER, mostly because I got the BEST NEWS that I could hear at this time from him:

My pacemaker is MRI capable!  The issue is not the pacemaker.  It is with the FDA, who stepped in to monitor devices in MRIs.  The associations for cardiologists and for radiology say the device is safe.  The central data clearinghouse medsafe says that the device is safe.  Folk with the device are getting MRIs in Europe.  Yet the FDA needs more information.  SIGH.

Still, there is a workaround.  It is a long and involved process that my cardiologist has to do that involves seeing a waiver and arranging for a programmer to be on hand and personally taking responsibility for any damage to the pacemaker.  If I decide that the MRI is necessary, he will go through the process for me.

I am absolutely, utterly relieved about that.

At my GP's visit, I learned that 60 mg was not the therapeutic dosage goal for the new nerve pain medication.  She would like to get me to 120 mg before making a decision about whether or not it will help me.  I'd need at least two months at that level.  So, on the morrow, I will be moving up to 90 mg for the next three to four weeks.  So, the plan is that, after two months at 120 mg, if I do not have adequate relief for the constant shocking in my hands—Day 91 of that particular misery now—then my cardiologist will start the process so that I can have an MRI.

Originally, she was going to do an MRI of my head and cervical spine, but I am going to ask her to go ahead and do an MRI of my entire spine and possibly my lungs, since we wouldn't want my cardiologist to have to go through his song and dance more than once.  I do fear that, after all of that, the MRI would not show any further changes in my brain, but I know that it would be needful, at that point, to rule other things out before concentrating on simply trying to calm down my blasted nerves.

That news alone would have made the visit worthwhile, but I was able to talk through several other matters.  One of the best moments—aside from my blessed pacemaker news—is that I was able to think of a way to describe the palpitations I have been having: it feels like my pacemaker is in test mode.  He knew exactly what I meant and told me that I was feeling PVCs.  That is something that he can track on my pacemaker to see if I am having more (which it feels like to me) or if I am merely noticing them more.

We talked about the daily torture I am doing, and he gave me something to try since I've abandoned the recumbent bike again.  Once the plantar fasciitis and then the tendonitis were resolved, I kept up the bike by rotating between a day of walking, a day of biking, and a day of half-and-half.  Only the biking hurts my thighs so much I finally decided a couple of weeks ago that I was going to just walk.

I also started back with using my free weights with my arms and shoulders.  In addition, I have been working on my calf muscles and trying to work on my thighs.  I tried to do lunges, but kept falling over.  I need a walker for that.  I've been doing squats, but I have worried they wouldn't count since I cannot go down very low because of my crappy knees.  I have thought about buying sleeves for them, but I am not sure the investment would been a good one for me.  And I just started back on some backwards leg lifts the physical therapist suggested I do.  [It is embarrassing to admit, but she believes that working on my backside muscles would be very, very good for me.]

Always, my cardiologist asked me to considering doing stair steps.  I was a bit ... well, I repeated for the dozenth time that stairs are hard for me.  But he was saying to use the steps of my stairs the way folk do in a gym.  Up and down on two steps, holding onto the handrail.  I thought that was a good idea to try.

At this point in the visit, my cardiologist told me that he thought I was doing a very good job taking care of myself and was clearly doing the best that I could.  Maybe not the best, but I would go with the good job.  After all, I am not a big veggie eater.

My cardiologist also said the most lovely thing today: "I don't want to do tests on you that will only come back normal, because I don't want you to think that your symptoms are not real or are unimportant."

He totally gets life with Dysautonomia!

It was following talk about the MRI (and my comment that it would probably be normal) and also about the echocardiogram he offered after my last appointment in a message to me.  It was an offer that I took a bit ... hard ... and waited to respond to until I saw him again.  The nurse wrote the email back to me, so it could have been her words or it could have been that I was upset after my last appointment.  In any case, I read it as ... if you really insist on being tested for something we can do this.

That's not what he meant.
Which I knew.
I just couldn't hear what he meant then.

My cardiologist, when I said what my plan was about the MRI, responded that it was a good plan.  That warmed the cockles of my heart.  After all, you know I sure do LOVE ME a plan.

When we were talking about the echocardiogram, he brought up the MRI plan again as being a good one and then said he felt we were on a good plan for watching out to be sure that the symptoms of Dysautonomia do not mask any symptoms of heart disease, given my concern about my family history.  I see him every three months; I talk about the symptoms I am having that worry me—such as the chest pain I get when my heart rate tops 130 or the palpitations I described this time—he listens closely and repeats back to me what I am saying to be sure he understands; and then he considers the possibly causes of what I am experiencing.  Thus far, he is confident everything is Dysautonomia-related, other than I now have a lazy heart.

However, my cardiologist said that I am the one living in my body and so if I tell him that I am just not sure about something, he is happy to follow up my concern with testing.  Then he made that most lovely and caring and compassionate of statements:

"I don't want to do tests on you that will only come back normal, because I don't want you to think that your symptoms are not real or are unimportant."

I got a bazillion "likes" when I posted it in the Neurocardiogenic Syncope (NCS) support group on Facebook.  Lots of congratulations on having such a fantastic doctor and lots of jealousy wanting the same.  I find it interesting that in the general Dysautonomia group, which is mostly Postural Orthostatic Tachycardia Syndrome (POTS) folk, there was not as much love.  I have had a lot of negative interactions with POTS folk and have noted they are more of a test-happy group.

I've read oodles of posts about having a second, third, fourth, and even fifth Tilt Table Test.  That is a very dangerous and quite awful test.  I would never go through it a second time.  But I see folk traveling from one doctor to the next, one specialty clinic to the next either wanting a cause or a cure or both.

Dysautonomia is incurable and its cause is primarily merely a good guess.  Some women get POTS after pregnancy, but why that happens is unknown since pregnancy itself is not a cause given there are a bazillion pregnancies each year and not a bazillion new POTS patients.

I do understand the desire to be better, but those of us are not going to get better.  We can have better management of our symptoms, but even then that can be tenuous at best.  I was making headway on the dryness in my throat and my sinuses, but what worked for me before is no longer effective.  And the Restasis is barely holding ground in the battle of dryness in my eyes.

Pursuing a cure will only lead to a troubled bank account and a troubled spirit.

NCSers tend to be more pragmatic about posts, asking about doctors and meds and symptoms.  And they are less strident about folk all being on the same page when issues are raised.  So, I was not surprised at all that there was an outpouring of emotion in the NCS group about my cardiologist's view about testing and just a sniff of that in the POTS group.  I am just thankful I had a place to share that loveliest of comments with folk who would understand its beauty and comfort.

But back to the visit, I will also note that I was able, whilst discussing the echocardiogram offer, to tell my cardiologist that I was triggered during my last appointment.  I told him that I didn't understand what was happening until my therapist pointed out that I had had a flashback.  It was a different sort of flashback than I had had before and didn't recognize it as such.  After she pointed that out to me and that news sank in for a few hours, I was able to see that my thoughts during my upsettedness were not based on what had happened now, but what had happened then.  I didn't tell him what triggered me or what I was thinking, but I was glad to be able to talk about that briefly.

I forgot to tell him that I should get brownie points for not sending him an upset response to the echocardiogram offer or after I was told the less than accurate news about my pacemaker not being MRI-compatable.  It is.  The FDA just hasn't recognized that fact yet.  Oh, the heartache that could have been avoided had the nurse from the pacemaker clinic just have explained that to me!

Well, I'm sure that I am forgetting something about my appointment, but you get the gist of it:  GOOD NEWS and good communicating.  This was my best cardiology appointment thus far, and it leaves me rather hopeful about future appointments.

Just how giddy was I about the pacemaker news?  I scheduled Attempt #2 at having an MRI.  I am going on Tuesday, just before my therapy appointment.  It is my hope that I go through with it so that I have a safe place to go afterwards.  SIGH.

Should I mention that I got COSTCO pizza on the way home??????????

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