Wiped
February 8, 2010
Couldn’t do anything today.
As per last week’s visit to my heart failure doc I have to take some water pills to flush out some fluid that seems to be hanging around my heart/lung area. It’s important to catch this right away and it’s most likely what was causing me to feel sluggish and short of breath. These pills completely drain you once you have taken one and I have gone to the bathroom to pee 1000 times today.
I’m struggling with eating a NO SALT diet. I thought I was for a long time now … how did I get a fluid traffic jam in my chest?
Red Dress Collection Fashion Show 2010
February 8, 2010
I’ve been waiting until I received my invite to talk about this exciting news… and it came today!
I have been asked to attend the Red Dress Collection Fashion Show this Thursday at the launch of Fashion Week in NYC.
I will be representing Wellsphere, an online health community where my blog is featured in the “heart health” section. Wellsphere has kindly asked me to attend and cover the event on SaveLaurensHeart! Of course, I said yes. I support what Wellsphere represents, as well as the reason for the Red Dress Collection: Awareness.
“The Heart Truth created and introduced The Red Dress as the national symbol for women and heart disease awareness in 2002 to deliver an urgent wake-up call to American women. The Red Dress reminds women of the need to protect their heart health and inspires them to take action. Each February since its launch, The Red Dress symbol has come to life on the runway with the support of the fashion industry and celebrity models at the Red Dress Collection Fashion Show.”
This is very real for me for my own personal reasons (obviously) as well as recent news that at the young age of 50 my mother has PAD, a buildup of plaque in her arteries which, if she does not change her lifestyle could lead to serious heart disease. That makes two parents with artery gunk. Awareness, paying attention to your bodies, and taking care of yourselves is so incredibly important –especially for all you fabulous ladies out there. We run ourselves down and forget that without our health we have nothing (yea I’m talking to you mom).
I can’t wait to show you pictures and tell you all about it!
Report from yesterday’s visit
February 5, 2010
Nothing crazy new to report after yesterday as I must go for two tests in the coming week or so that will tell us more about my leaky valve.
Here’s the run down from yesterday:
- I am short of breath because I am retaining some fluid. NOT good for heart failure patients. It’s from my diet, eating too much salt. I have to take some Lasix (water pills) that flush out all water from my system for a few days. I also have to take some potassium which keeps my levels high to avoid any risk of arrhythmias.
- Turns out I am a candidate for this Evalve trial. I asked some more about it yesterday and my trusted heart failure doctor thinks it’s a good idea. I am going forward with the testing and I will meet with the Doc who runs the trial soon enough where I will ask all of my questions and make a decision from there I guess.
- I learned that this Evalve Mitra clip is implanted meticulously into your valves. I also learned that it is almost impossible for it to move once implanted because tissue actually grows around it and holds it in place. Creepy right? Then I will have four things implanted into my little heart: three leads from my pacemaker defibrillator and a little clip that holds my valve together. So crazy.
- As usual, I left feeling like I am in capable hands but realizing that no one truly knows how this is going to turn out. The only plan we have is to watch my heart closely. I wish there was a magic pill I could take to make it all better. Get that left ventricle moving again.
I’ve decided I’m going to do something nice for myself this weekend. Treat myself to something special. Not sure what yet. I know it can’t be in the form of a brownie sundae considering that I am going back to eating as well as I did before I slipped up. So what will it be? Hmmm.
Another day at Columbia Presbyterian Hospital
February 4, 2010
(click above to hear song)
I like this song because I feel like it’s an appropriate soundtrack to my doctor and hospital visits. It evokes this mechanical robotic vibe and it feels very institutional. Yet, her singing is melodic over it all which is sort of how I try to approach days like today. There is a lot of harsh reality surrounding me, and I may get upset, but my positive thoughts and strong hope are the equivalent to her soothing tone of voice over the oppressive clanking and hammering.
I read somewhere that Charlotte Gainsbourg came up with the song when she suffered a head trauma and had to go for MRI’s frequently over the course of 6 months. It was the loud clanking sounds that inspire the rhythm to the song.
Anyone who’s been inside one of those scary MRI machines knows about those sounds. They add to the already uncomfortable experience of being tied down and slid into a tunnel. The whole experience is unnerving. Luckily I am not allowed in those machines anymore because of my pacemaker/ defibrillator (no magnets please!).
By the time you’re reading this I will be in my appointment. Here’s to good news.
2 am. can’t sleep.
i’m such a mess. every time i put my head on the pillow i count my heartbeats. they are really fast tonight.
i’m really tired but i cannot relax. so tense. so anxious. the pain is creeping all around. no relief. i wonder what’s going on inside, in my heart. i just want to sleep but it seems impossible.
The Phone Call
February 3, 2010
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?
February 3, 2010
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.
Evalve?
February 3, 2010
Big appointment with my heart failure / heart transplant doctor up at Columbia Presb tomorrow.
We are going to discuss the next step and schedule tests to look close at my heart again to see if the leaky valve has progressed. We are also going to discuss my options if it has progressed. Options meaning surgery. (I hope it has not progressed).
Then today I get a phone call that I was supposed to get way back in September. Yes, I’ve been waiting five months for this call. It was the office of the doctor who runs the Evalve trial at Columbia. They say that I am a candidate and they want to get all the testing done as soon as possible because “there is someone waiting”.
When I asked what they meant by that she explained that they only perform this procedure in pairs, for two people at a time, and there is a person who has been approved that is awaiting another person to get it done. I had a weird reaction to this. I was really annoyed actually… I wait and wait and wait for your phone call now I’m going to be rushed into this? I don’t even know how I feel about getting a clip implanted into my heart. I’m not sure I even want this! They are moving quickly but I cooperated since I like to have options. I spoke with the nurse on the phone who asked me a bunch of questions and explained the process of testing to me. This is means more time up at the hospital. Awesome.
Tomorrow I’m bringing this up at my appointment. I don’t have a great feeling about this Evalve thing so far. I wonder if I’ll change my mind…
Have I mentioned how cranky I am today? The pain has subsided but it’s still there. I am super frustrated and really can’t stand to be inside any longer yet do not feel well enough to go out today yet. I’m in bumble bee mode.
Castor Oil Packs
February 2, 2010
I’ve been doing castor oil packs on and off for almost two years now. Castor oil has many natural healing qualities so I always make sure I keep some in the house.
I learned to do the castor oil packs from one of the many healers I’ve encountered. She is a lovely woman who specializes in Mayan Abdominal Massages. When my stomach was at its worst from the ischemic colitis and torn apart from all of the harsh medicines I’d been taking, the abdominal massages were usually the only thing that could get me to eat and digest successfully. She used castor oil for the massages but first she would put a castor oil pack on my stomach.
The castor oil pack consists of one layer of castor oil that you rub into your entire abdomen, a rag soaked in the oil which you place over your abdomen, and then you wrap it up tightly with saran wrap. Finally you put a hot water bottle over your wrap. The heat is essential for helping the castor oil to soak in through your skin and get to your organs. Most importantly, the castor oil pack cleanses your liver and gall bladder as well as you upper GI tract and stomach. It can be sort of messy (and it stains) but castor oil is so amazing I use any extra to rub on my face and arms. Sidenote: I find that it gives my skin a really beautiful glow when I use it on my face every so often.
Here are some pictures of my process. In the first shot you can see my supplies. That hot pink water bottle is one of the most important utensils in my home. I put scorching hot water in there and hug it when my stomach hurts, or place it over muscles and joints that throb with pain. It’s incredibly soothing.
The second shot is a side view of how my stomach looks after I’ve wrapped it up. The next step would be to lie down with the hot water bottle for about 20 minutes.
Benefits and Uses of Castor Oil:
- reduces inflammation
- increases circulation
- repairs damaged tissue
- facilitates new tissue growth
- stimulates the production of collagen and elastin
- strengthens the immune system
- induces labor in pregnant women
- laxative for constipation
- anti-fungal components
- antibacterial components
Why?
February 2, 2010
Awake all night. Haven’t slept even one minute (it’s 6:30 am).
The pain is intense. Unbearable even. My muscles feel like they are going to explode from the pressure. Like my bones are being crushed.
Why? Why? Why?
