Tag Archives: what now?

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.

Discarding my Obsessions with Understanding Death and Illness

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Today, another step in a positive direction;  I’ve officially turned off my Google Alerts for the following keywords:

  • Scleroderma
  • Mixed Connective Tissue Disease
  • Pacemaker Defibrillator
  • Heart Failure
  • Autoimmune Disease and autoimmunity
  • Lupus

Sure, it’s great to know what’s happening and at times I even find articles within these alerts that I write about here, YET they do more harm than help on my mental state most of the time.   Every single Scleroderma alert typically opens up with an announcement of someone’s death that is covered in a small town newspaper.  It talks about their fight with this incurable disease, and how this good person didn’t stand a chance against it… and while I purposely don’t let it affect me, it must do damage and terrify me on some level because I think of them from time to time.  Really though, who needs to read about death every day?

The thing is, I’ve gotta keep my head in the “game”, and my healing and positivity game when it comes to my condition is pretty on point right now.  I’m happy to let these obsessions go.  Once upon a time I felt like if I read every single piece of information regarding my condition(s) available out there on the web I would miraculously cure myself.  Like, if I could just wrap my head around these illnesses, or narrow it down to the very second I got ill, or my heart started failing, and somehow make myself understand, I would make it all disappear…

Happy to be at this point.  Baby steps, but progress nonetheless!  The only Google Alert that I kept?  My fave, Stevie Nicks.

The “What Nows?”

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I find myself in such a new place right now. Feels like I am completely starting over and to be honest, I am feeling a bit lost.

Clearly the past three years have thrown me for a loop.  Whatever life I was living came to a screeching halt and got flipped upside down and shaken and stirred and sent on an insane roller coaster ride the second I heard the words “Lauren, your heart is pumping at 15%.”

While it’s true that I wish I never had to witness my body struggle with illness and heart failure, I am grateful for the transformation I’ve watched happen.  It’s changed me tremendously and taught me things about myself that I may have never otherwise learned in a lifetime.  True, I am grateful every day, but I can’t help but go through bouts of frustration with my “What Now’s?”

Since I am feeling better (and better and better and better), I am slowly gaining the luxury of living outside of the survival mode I’ve been in for so long.  Questions like “what is my passion?” and “what will fill me creatively, or  intellectually?” are beginning to surface.  It’s like going through a rebirth of sorts, viewing the world with endless possibilities all over again.  It’s overwhelming in a good way.  It’s simultaneously terrifying and liberating, and all of the by product emotions that come with those sensations.

The strangest part about this is living “in between” worlds; the world where I see myself as a healthy human exploring my future vs. the world where my sensible side reminds me not to “push it” physically and to keep up with my health regimen, doctor appointments, and all of the necessary upkeep of researching my medical options (open heart surgery in this case). This balance is so illusive!  Two weeks ago I am feeling amazing and free and healthy, making big plans –only to find myself in bed for most of last week struggling to work up energy to buy some groceries or even eat them.

What will this week bring?

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.

Autoimmune Disease Summit

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Here is the official webcast of the first autoimmune disease summit which was held on March 3, 2010.  It was the kick off to this exciting month of awareness.  The main theme?  “The Global State of Autoimmunity Today”

From the press announcement:

“The summit will bring together researchers, patients, policy makers, and the media to bring a national focus to autoimmune diseases and to the 50 million Americans who currently live with an autoimmune disease. The program will feature a series of panel discussions and updates on public policy, media responsibility and public health issues, rise in autoimmune disease incidence, and future innovations in tracking, diagnosing, treating and curing autoimmune diseases.” (via)

It feels so good to see an effort to shift the focus onto autoimmune diseases.  I cannot tell you how many people I’ve encountered (including nurses) that have looked at me with an expression of utter confustion when I try to explain my chronic illness.  These illnesses are misunderstood and dangerously under the radar.  I make every effort to spread a little more awareness each day.

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.

A Day In the Life – This is just CRAZY

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I’ve been waiting for a while now to be contacted by the Evalve trial.  I got bloodwork done as soon as they asked for it two weeks ago (after waiting five months to be contacted by them).  They told me they would be in touch right away to get the rest of my testing under way.  Since then… silence.  I even left a few messages for them.
Today I get a call from the assistant of the doctor who is running the trial.  She called, concerned that I didn’t get my bloodwork done.  I explained that I did get it done, two weeks ago, and she should call and ask for it. This was the beginning of a very unsettling conversation:

The very nice assistant then told me I’m “all set for tomorrow”.  Tomorrow?  What is tomorrow? I asked.   Apparently they booked a very big test for me and never told me about this.  No phone call, nothing in the mail, nada.  I proceeded to ask questions.  The assistant explained I would be getting an echocardiogram.  No big deal I thought, I’ve had those before.  But then I thought about it and I asked if it was in fact a trans-esophageal echo (the one I need to complete my review for the Evalve trial –the one I’ve been waiting forever to have done).  This is a pretty big deal to me considering I will be put under anesthesia and I had less than one day’s notice. And sure enough, it is the test I am going for in the morning.  Good thing I know I cannot eat past midnight tonight AND that I would need to bring someone along with me tomorrow.  Because not one person called to prepare me.  How crazy is that?

This all made me very unsettled.  If they can’t even get themselves together and organized to schedule my tests how am I supposed to feel good about any of this?  How do I trust this operation to go into my heart through one of my main arteries and stick a microscopic clip onto a valve in my heart?!!!  It’s scary enough and it’s even worse when you go into a situation where you do not trust anyone because of the rampant incompetence.

I’ve had my share of bad experiences in hospitals so I am already scared of procedures because I have seen doctors act carelessly.  I have a hard time putting my trust into someone’s hands so when stupid stuff like this happens I feel so incredibly helpless.  It makes me really nervous and while I just want to get this over with I am super nervous about tomorrow.  I am headed to Columbia first thing.

I am getting these two tests tomorrow and from what I understand I will then be told if I have been accepted into the trial.  I will then meet with the doctor in charge of the trial itself and ask my questions.  I’m not even sure how I feel about any of this at this point…  It’s all so fast.

The Phone Call

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Rheumatologist finally calls.  I am underwhelmed.

After waiting a day and a half to speak with him it is clear that he is rushing on the phone with me.  I don’t blame the doctors themselves anymore, they simply don’t have time, and I don’t really take it personally anymore but it doesn’t mean that it’s not incredibly irritating.  I always feel alone and a bit helpless after one of these phone calls.  The truth is the doctors really don’t “get it”.  They don’t know what it’s like to be in this sort of pain.

I was put on hold two times for four minutes at a time during our short conversation (he had to go because he had patients in the hospital to attend to).  It was a very rushed conversation… I even forgot to ask him a few things.  After discussing quickly what I’ve been doing to maintain my pain he suggested a new type of drug for me to take: a line of drugs that are currently being used to treat chronic pain in Fibromyalgia patients such as Lyrica, Cymbalta, and Savella.  He suggested and has had most improvements with Savella.

Luckily I have been able to avoid these drugs up until now and I don’t like the idea of taking them at all.  They may be good for some people and I know some who have taken them to alleviate pain, but I personally prefer to keep my prescription meds to a minimum considering all that my badass liver has weathered.  That, and I like to be extra careful because of my heart.  You never know how these things may affect your rhythms.

Also, I am not so psyched to take a medicine where the side effects start out with this statement:

You may have thoughts about suicide when you first start taking Savella, especially if you are younger than 24 years old. Your doctor will need to check you at regular visits for at least the first 12 weeks of treatment.  Call your doctor at once if you have any new or worsening symptoms such as: mood or behavior changes, anxiety, panic attacks, trouble sleeping, or if you feel impulsive, irritable, agitated, hostile, aggressive, restless, hyperactive (mentally or physically), more depressed, or have thoughts about suicide or hurting yourself. Avoid drinking alcohol while taking Savella. Alcohol may increase the risk of damage to your liver.

Um, no thank you.  I think I’ll pass on the hostile, aggressive mood swings and panic attacks.  Been there done that with the ROIDS (Prednisone) and it wasn’t pretty.

And here is my favorite part:  “Be careful if you drive or do anything that requires you to be awake and alert.”

Wtf?  That’s hilarious.

Guess I have to keep up my pain management, and when it’s bad take the painkillers and stay home on the couch.  These other medications are not an option for me.  Not cool.


You’re joking, right?

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After a solid two years of dealing with the circus that is Healthcare in NYC it takes an extraordinary mess to surprise me at this point.  An extra special feature that can set me off and become annoyed, enraged, or just insulted.

For example, I am keeping calm about my present gripe:   I emailed my Rhuematologist yesterday at 6am after a sleepless night of intense pain.  He wrote back explaining he would call me back to speak with me about some options.  He never called.  Not once. All day long.  This is infuriating, true, but I can’t get worked up over it.  I am so used to it by now.  Today I am trying to get in touch with him again.  Grrrrr

Now onto the showstopper.  I have an issue that is too personal to put on the internet.  There is ONE doctor in Manhattan that specializes in this problem.  I called the office today to make an appointment where I learned the following:  This doctor does not take insurance (not a  surprise), and the fee for your first appointment is $810 which must be paid the same day as your appointment.  WHAT?

$810 is an all time high.  I am in shock.