Feel like my body is glued to my bed today. I haven’t been able to get up yet. It’s 3:30 pm.
Whenever I have those drugs in my system from a procedure I usually have trouble sleeping. When I finally get some sleep I then have the absolute worst dreams. They are so real and really terrible and dark. It seems to get worse and worse each time I get IV drugs for procedures.
All I can manage to do is sleep and lie horizontally. Yesterday took a lot out of me. It’s all about getting comfy and cozy.
I’m supposed to talk to the Evalve doc today and find out the results from yesterday’s tests. Basically, we want to know if I am eligible for the trial and all the “why’s” if I am not eligible. When I spoke with his assistant very briefly yesterday she said that judging from the preliminary tests it looks like I may not be accepted. That’s all I know so far.
T took some pics of me at my request. I like to document everything. I always laugh about what the nurses and doctors must think when they see us doing a photo shoot in hospitals, medical offices, and ERs. It’s pretty funny. We are so used to this by now that we find ways to laugh, have fun, and make light of every situation. If you can’t laugh at this stuff it would all be too heavy to deal with.
Hot picture. Taken right after my procedure, these are the glazed over eyes of someone on a lot of intravenous painkillers / anesthesia.
Standard IV shot.
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.
I’ve been out since 3 pm. Came directly home and was still very much under the influence of drugs so I went into a deep sleep until just now.
I’m safe and well. Just a sore throat and really out of it. Details to come.
Getting tests done.
Right about now I should be in a yummy twilight sleep.
Details when I return.
Lots of Love
L
This continues to be a mess. We are now waiting almost one hour here at the check in desk. Why? Because the coordinators of this trial chose to wait until TODAY to call and get authorization from my insurance.
Today, the day of the test, the day that I had to fast since midnight and I just want to get this over with. I’m so annoyed. Shouldn’t they have done this already?
These long cab rides up to Columbia Presbyterian hospital are quite interesting. I am usually in some sort of ‘altered state’. Worried, anxious, annoyed.. each time it always seems to be the longest car ride of my life. It’s always better when I have company (like today).
I secretly hope that when they look in there with the echocardiogram machine they find a perfectly functioning heart. I keep hoping that it’s all been some sort of bad dream, that it’s over now, that they don’t find anything wrong at all! Wouldn’t that be amazing?
Bad dreams.
Terrible icky dreams.
Staring at the ceiling wondering Whether I should take my heart meds in the morning. No one mentioned it to me…
Anxiety.
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.
Today I am off to the Osteopath. I credit him for a lot of my progress this year.
When I first started seeing the Osteopath I had never heard of this type of doctor before. I started seeing him one year ago this month and it was right after one of my many awful ischemic colitis episodes. I suspect these attacks happen from all the medication I was taking and it is basically the worst pain I have ever felt in my life. I was hospitalized 13 times in 2008 alone mostly from these awful episodes. The blood vessels in my stomach contract and prevent any blood to reach the intestines causing lack of oxygen and mind bending agony as well as some other gross stuff which I won’t get into here. So basically, when I saw Dr. V for the first time my stomach was in shambles and I was incredibly underweight and weak after yet another hospitalization.
Over the past year I have seen him at least once a month (in the beginning it was once a week). I noticed how great I felt after each adjustment and since I saw him two weeks ago I’ve felt more and more amazing with each day. I really trust my Osteopath because not only does he know what he is doing (super smart dude) but he also really cares about his patients, and he knows the human body well. He is also a true natural healer, a believer that in most cases the body can and will heal itself if given the right conditions. I was immediately drawn into Osteopathy because of the holistic approach it takes to the human body. The belief that every organ must work harmoniously to create an optimal environment for health and healing makes perfect sense to me.
A treatment at the Osteopath is as simple as lying on your back for thirty to forty five minutes. There is no cracking or pulling as in Chiropractic medicine. This is completely gentle, and the doctor usually places his hands on your lower back (sacrum), back of my neck and head, face, and over my stomach. You can feel him manipulating the muscles and bones very soft and easy. There is no discomfort or pain involved. It’s basically nap time.
I am so grateful to have found a doc like Dr. V. From my experiences I know doctors like him are very hard to find in a city filled with cold ego maniac physicians. I know that with his help I will be healed and brand new. He says my disease is regressing. He says he believes I can be one hundred percent healed of my condition. And I believe him.
