Tag Archives: doctors

Process and Prepare

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It has taken me about this long to normalize after last week’s hospital stay.

Intense is the word I’ve been using to describe it.  I was treated very well at Columbia Presb but I also had a lot of crazy stuff done to my body within the first two hours of being admitted and I feel like I am just recovering from it.  They immediately sedated me and did a test  (a TEE) where they stick a camera down your throat to get a close look at the heart.  This was to ensure that I hadn’t developed any blood clots during that time that my heart was bugging out –atrial flutters, as they call it.  It felt like my heart was going to pound right out of my chest and I have no idea how I stayed like that for three days before going into the hospital.  I get these things in my mind, you know? I get determined, and I decide that my heart will correct itself.  Well, when the third day came and I couldn’t even stand I knew it was time to surrender and listen to my doc.  Off to the hospital we went.

After this first test (luckily there were no clots) came the big show.  Cardioversion.  This is when they shock your heart back into a normal (sinus) rhythm.  Like in the movies when you see them say “clear!!”  Anyway, they give you a super heavy sedative for this one and you don’t know what happened until you wake up with small burns on your chest from where you were shocked.  I felt much better after this since my heart wasn’t racing for the first time in days.  Yet, there was still something remaining…. a meeting with the surgeon.

I had been avoiding the cardiothoracic surgeon most of the summer.  Even though this open heart surgery is hanging over my head I tried to pretend everything was fine and have a fun time.  Turns out you can’t avoid reality forever.  After a talk with the surgeon, my doctors, and a weekend of many phone calls and a year of research under my belt, I have decided to go ahead with open heart surgery to repair my (mitral) valve.  Last week was a clear indication that I can’t put this off much longer, there is too much at risk … if that happens again it could significantly weaken my already fragile heart.

So, once I made the decision to get the surgery I went into business mode.  Getting tons of stuff done, my records sent out, preparing, talking with my family.  I want the best mitral-valve-repairer in the US.  I want someone who has done hundreds of these surgeries, an expert on repairing the mitral valve.  It is very important since I am young and I hope this will be a badass “band-aid” to keep my heart strong enough for 10-15-20 years before I have to make any more major decisions.  I’d like a chance to live my life without this heavy decision and scary surgery hanging over my head.

In true Lauren fashion, now that I’ve made up my mind I want it done asap!  We are looking at this winter, hopefully January so that my 6-8 weeks of recovery is done while the weather is cold and bitter. I would hate to miss out on summer weather.

Back to my full-time position now.  The phones haven’t stopped since I’ve been home.  I want to be sure that anything I can have control over is done to my liking. Sure, there are tons of emotions; I don’t really sleep from nerves, and I am super scared to think about being cut open or waking up with a tube down my throat, but I haven’t allowed my brain to go there yet.

For right now it’s all business.  After that I can cry and be scared.

Frustration

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I’m at my best when I stay far away from the doctor’s offices.  Unfortunately, I cannot stay far away for very long considering that I have a standing appointment with my heart failure specialist at Columbia every three months.  They like to keep a close watch on my ticker since it is quite the mystery…

In between appointments I keep my mind in a great place.  I truly believe with every cell in my body that I will heal myself, that my heart will improve –if not heal completely.  I work really hard with different healers and holistic doctors, I do my own work, I read and research.  But most of all, I believe and I stay positive.

There’s nothing like a trip to the hospital to drain that from you.  It’s like going into battle for me.  Simply walking into the hospital is enough to give me an anxiety attack.  I prepare mentally for the worst and I put up a shield so no words can hurt me.  Not that my doctor wants to hurt me but their “frankness” can be a lot for anyone to handle.  For instance, this time around a single sentence is what stung the most; when I asked my doc what she would do if she were me in this situation she began looking through my files and started her answer by saying “well, eventually we are going to have a problem…”  meaning, according to her medical training my heart is bound to only go in one direction.   She’s the expert, that’s why I go to her, but I just can’t think like that. No way.

So, here I am in the aftermath of a trip to Columbia at the end of last week.  Part of me has to be sensible and prepared so I do my research and consider what we’d have to do in the event that I do need open heart surgery to repair my valve.  I hate even thinking about it, but it would be stupid of me not to.

My current problem is how do I do both?   How do I believe and stay my own course of healing while making preparations for the sensible world of western medicine?

I’m very cranky today.  Sometimes I get incredibly fed up with having to make decisions about my health/my life constantly.

Beginning of the Month = Refills on my Meds

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I am very happy to say that I have cut down my meds to the bare minimums.  No more chemo-like toxic drugs, no more steroids — only the very necessary that I need for my heart.  Having said that, it’s still more than your average twenty something year old.

I stay away from taking anything that I absolutely do not need and I have taken myself off of things the docs insisted I “needed” yet I found to be making me SICKER.   There are days when I need painkillers (unfortunately I still have bad days), and there are other sorts of meds that I take as needed when a crisis arises, but for the most part these medications are not ruining my quality of life.  I’ve gotten used to the heart meds and have figured out a good schedule to take them throughout the day (the intense drowsiness and low blood pressure they cause used to make it impossible to get out of bed sometimes… and forget about standing up too quick)!

Thought I’d share a couple of shots of my medicine and the drawer they live in!  I took this opportunity to clean out that drawer and found a couple of stragglers…

Found !  Leftover steroids a.k.a THE ROIDS a.k.a. crazy pills.  Sure, these little guys got me up and running while I was still very weak and experiencing lots of pain but that came at a cost:  my sanity!  It’s amazing what these tiny pills can do to a person.  They made me a cranky, irritable, sobbing, mess.  I had to taper off them before I completely lost my damn mind.  Straight to the trash can little suckers!

Do not lie down for at least 10 minutes after taking this medication.

Dizziness.

May cause headache.  May cause blurred vision.

Heart protection.

Looking forward to the day I can use this drawer for jewelry and makeup… It will happen.

Found Freedom

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It’s amazing what a few weeks absent of doctors does for me.

It’s obvious from this journal that I have become somewhat obsessed with healing myself which includes attending many standing appointments each week –most of which I have come to convince myself that I now wouldn’t be able to live without.

It takes a lot for me to leave this “routine”.  I feel like a missed acupuncture session (I go once every two weeks), or osteopathic visit (once every three weeks), or pain management therapy (once a week) could be the difference between a happy, able-bodied Lauren and complete illness or disability.  It’s very black and white in my mind, and I am always striving for that illusive balance.

Being away from my every day life for a short time helped of course.  I decidedly push myself into certain circumstances where I may not feel 100 percent safe (within reason of course).  I mean traveling, or being away from my resources: my “team” of healers and doctors and an arsenal of herbal remedies, healing teas, and supplements (I have an entire cupboard dedicated to this).  I feel compelled to force myself outside of my comfort zone often otherwise it’s just too easy to stay confined to a bed, a couch, my apartment, and a small circle of life which makes my world smaller and smaller by the day. You start to believe you cannot do things. In my opinion, that is not living.

So the past three weeks has been about pushing.  Again, within reason (I’ve learned that pushing too far in either direction is no good).  But, I write today very happy and feeling healthy.  I am always a little bit closer to accepting that my health condition will never be perfect, and I must do things that many people my age won’t have to worry about for another fifty years.  But, I’ve come to enjoy being conscious of my heart, listening to my body, respecting when it shows me signs of distress, which in turn keeps me incredibly grateful for every new day. I’ve never felt so proud walking up subway stairs (with mini breaks of course)!

Now the test will be to keep in this head space.  I have an illness within an illness to control here: it’s the phone calls, insurance companies, doctors offices, and general healthcare insanity that I find infects me.  Trying to keep up is ultimately oppressive and heavy –and often times even on a good day a bad phone call could crumble it all.

It takes a lot of strength not to feed into the cycle.  I’m ready for the challenge.  All I keep repeating to myself is:  I am healthy, my heart is healthy in its own way, and everything is gonna be alright.

Dysfunctional relationships

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I have been attempting to order DVD copies of my latest test for one week now.  I have called two offices to have them help me, left voicemails at the number I was given for the Echocardiogram desk at Columbia and NOTHING.  It is a seemingly impossible fete!

You must go in person to actually sign for these copies which I am aware of and ready to do BUT I wouldn’t even know where to go at this point.  I have been sent in circles.  Why is this so hard?  Why hasn’t anyone called me back?!  What is the problem?!

I am in a dysfunctional relationship with the healthcare system…  I give so much of myself with little to no reciprocation yet I still call and leave messages constantly.

I need these copies because I have a plan (soon to be discussed).  I am tired of waiting around.  I’m doing things my way.

How do you take a vacation from your body?

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It’s one of those times in my life where I am feeling quite overwhelmed.

I have not stopped to reflect and truly put things into perspective since last week’s flurry to get my test results and all of the nonsense that comes along with something like this.  Learning new information like my valves are “eccentric” (and therefore could not be helped by the Evalve trial) is staggering but I didn’t let it trip me up this time.  I made a promise to myself a few months back that I will never get my hopes up about medical “things” until they are 100%, and I will take each piece of new information, absorb it, file it in my brain, but not allow it to harm me.   I knew this time I wouldn’t let myself go backwards.  You just gotta keep moving forward.

I process a lot of information when it comes to my health.  It’s always on my mind, I’m constantly thinking and researching, and calling offices and insurance companies, etc.  It is my full-time job (as I’ve said so many times before).  I have been so busy just trying to manage my healthcare that I actually feel removed from it –as if I am calling for some other girl.  Like I am watching a movie. I forget that I am actually working on ME and my heart!

The most daunting aspect of this insane ride is managing the doctors and their egos (and don’t even get me started on the hospital staff and secretaries that I’ve encountered).  It’s actually nauseating how political you have to be with these dudes.  Through experience I’ve learned (most times the hard way) how you should speak to this particular breed of human (doctors with tremendous egos) to get the most successful outcome.  It is work, let me tell you.  I want to compare it to being an assistant or PR person to some diva Hollywood star… you have to revere their feelings first and foremost, then figure out a plan from there. (I’ve noticed that Rheumatologists are especially sensitive, or “macho” as my pharmacist called one).

I have decided that I reached my limit today for this quarter.  I am so sick of it.  I stopped to think about what I was doing at one point and I am appalled at the fact that this is a GAME.  Healthcare is a game, a joke, a system you have to work in order to make it work for you.  If I wasn’t so exhausted I’d get into details but I think rehashing at this point will only get me agitated.

After tomorrow’s Rheumatologist appointment I need a break from associating with my doctors and calling hospitals searching for my test results.

I really need a break.  Just a nice little sabatical.  Sucks that you can’t take a vacation from being chronically ill with a fragile heart.

More to worry about

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My throat hasn’t been back to normal since that awful test last week.  I’m beginning to really get worried if there is something wrong.  They informed me that there is a problem if I see any blood in my mouth when I cough.  Haven’t seen any but sometimes I taste it.  Gross, I know.  I never know when to go in and check it out or just see how it goes?  I get especially paranoid when I feel so weak like I do today.  Ugh, I’m really stressed out.  Mostly because I do NOT trust 90% of doctors and who knows what could’ve happened while they jammed that tube down my throat?

PS  adding to my anger:  the doctor that runs the Evalve trial still HAS NOT called me with my results.  I hear through second and third hand accounts that I am not a candidate because my valves are “too messed up” and the clip would not help them.  How is that for professional?

Doctor – Patient Void

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The frustration continues as I try to get my test results from last week.

I was rushed to go in for this test and have since never heard from the doctor in charge with my results.  I’ve heard second-hand murmurings from my nurse and from his assistant (not a nurse) that I am NOT a candidate for the Evalve trial.  It wasn’t until today that I spoke with my regular nurse and she explained that from what she knows the doctor says the way my valve is structured the clip will not help me.

I call his office every day and get forwarded to voicemail.  I left another message this morning.

It’s so unsettling when you feel like doctors do not care or don’t care enough to take the time and explain things.  I’ve been angry at this doctor… first, for the disorganization and for the five months of waiting to hear from him and schedule this test –and now because he doesn’t care enough to call me with my own test results.  There is also a major question here: What do I do NOW? Can anybody tell me?

These doctors just do not understand what it is like to be in a position like this.  I am a patient, this is my body and my life we are talking about.  I am scared, I don’t know what my next course of action is, and I feel it is my right to know my own test results so I can move on.  Are they so disconnected that they do not realize a patient needs some level of respect, care and explanation?

I feel like one of the mice they use to test in labs.  They scooped me up the day before without advance notice, ran invasive tests on me, and tossed me out now that they don’t have a need for me for this trial.

Trans Esphogeal Echo – The Report

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First and most important I am really glad this part is over.  Big sigh of relief there.  But, in true Lauren fashion, things didn’t go without some glitches and this girl is feeling the struggle right now.

After a very long morning (I couldn’t eat since last night so I was miserable) I was called in.  They did a regular echo cardiogram first which takes about 20-30 minutes.  It’s always fascinating to see you’re heart beating and this was a special 3-D echo.  It was actually really trippy and interesting.  Then it was time for the big show.

The doc went over everything with T and I.  I got the oxygen put in my nose and things got rolling  The doc said he would take it slow, explaining everything as he went along.  Well, I felt the drugs hit me but they weren’t totally working.  I woke up when they were positioning the tube in my throat!  I kept raising my hand per the doc’s instructions to let them know I felt everything and I needed more!

I couldn’t swallow this big tube down.  I kept gagging.  That’s when a new doc came in.  Homegirl just shoved it down my throat into my esophagus.  “This lady is no joke”, I thought.  Thankfully, they numb your throat so that helped.  I was so incredibly uncomfortable during the entire procedure.  I felt everything!  The drugs weren’t working.  I kept asking for more, hitting the nurse’s hand, squeezing her fingers,  and the doc (in hindsight, understandably) said he couldn’t give me any more, that they had reached the max for someone my size.  I proceeded to feel this large tube being taken out and I wanted to cry.

Then, sure enough after the procedure was complete the drugs hit me.  I was smashed and as if some sleeping spell had been put on me I was out.  My blood pressure went down pretty low so they had me sleep there for a couple of hours while they monitored me.

The doc came in to chat at one point.  He was super nice and I could tell I freaked them out (I always repeat to myself “doctors are people too doctors are people too”). I was also beastly when they took the tube out of my throat so I can’t imagine that I was very nice (unlike me in those situations).  He said he was sorry that it was so uncomfortable for me.  The nurse told me that next time I should ask for an anesthesiologist who could administer more drugs and get me to be more relaxed.

Happy to be home and cozy.  I feel like I could sleep for days.  I am so very happy it’s over and done.