I know it's a rotten trail of nothing but trouble, but I've been doing research on the side effects of some of my medicines. After the third month of getting IVIG, I started developing a really bad rash on my left hand. Every month it gets a little worse, and this month it's really bad. So anyway...I didn't find anything about rashes.
Just a whole shit ton of warnings about all these crazy things pertaining to both IVIG and to milrinone, the drug I'm on CONSTANTLY.
No one has told me anything.
Do my doctors know this shit?
If so...why am I allowed to be at home, and why are my cardiac arrhythmias just shrugged at?

*sigh*



The use of milrinone both intravenously and orally has been associated with increased frequency of ventricular arrhythmias. Long-term use has been associated with an increased risk of sudden death. Hence, patients receiving milrinone should be observed closely with the use of continuous electrocardiograpic monitoring to allow the prompt detection and management of ventricular arrhythmia. Patients receiving milrinone should be closely monitored during infusion.

There is no experience in controlled trials with infusions of milrinone for periods exceeding 48 hours.
Whether given orally or by continuous or intermittent intravenous infusion, milrinone has not been shown to be safe or effective in the longer (greater than 48 hours) treatment of patients with heart failure.


WAIT, WHAT THE FUCK????

Worried.

I am worried.
Worry worry worry.
Furry.

Seriously though.

I don't want this space to create hurt feelings or for my own feelings to create a reason for my name to disappear from the transplant list.
It's a touchy situation- spilling everything for the entire world to read- not that I think the entire world reads my blog- BUT... I feel like the risks are too great and the benefits too numbered.
So from now on the only experiences I'll share are ones from the hospital specifically, I'm going to leave my (home) personal life out of it.
Why do you care about my shitty relationship with my family?
Haha...you don't.
So lets talk about the article I'm writing for the American Academy of Pediatrics bi-annual newspaper. I want to bring to light some of the shitty situations people encounter when transitioning from a pediatric hospital to an adult one.
I haven't been contacted back yet- but have been told that from time to time the Academy publishes pieces from sources other than professional physicians...so keep your fingers crossed.

First of all- it's important to understand that I had been at the children's hospital for 7 years (and still should be) when I was made to leave.
In November of 2007, I developed histoplasmosis after a caving trip. With my weakened immune system, I quickly developed pneumonia, and with a collapsed lung and kidney failure I was in the intensive care unit for 13 days. It was during this time that the state sent out their yearly "audits" to make sure people are still eligible for medicare. Since I was hospitalized the form went incomplete past the due date and I actually lost my medical coverage.
I talked to a few people and they told me to simply re-apply. I didn't think anything of it when they told me I was too old to reapply for medicare. I had to apply for medicaid. What they neglected to inform me was that my current hospital didn't accept medicaid because it isn't usually used in young people... I believe "old ass insurance" was the term used.
So...at a time when I was being put on the heart transplant list, and had lots of other shit going on, I had to completely switch hospitals in the midst of it. I had to meet and form completely new relationships with my doctors and nurses.

I am a whiny baby.



PS...this is funny.
http://abcnews.go.com/Health/popup?id=2242810&content=&page=1

Good night.

with/without

Buck up and take care of it myself.

Here it is, then.
The public record of my life on and off the heart transplant list.
I've been meaning to do this for a while- we're talking around 4 years. Unfortunately (or maybe it's a good thing) the lack of resources for young adults who've had/are waiting for heart transplants is ridiculous. I've been searching the Internet forEVER, looking for anyone who is talking about their experiences with this specifically.
Sure, there are resources for the technical aspects of the entire experience: what happens before/during/after, waiting list data such as UNOS, and multiple sites for the parents of pediatric transplant patients. This is all great and helpful, but to an extent.
I'm tired of coming upon these websites dedicated to chronicling how to retire after transplant.*
*Can I clarify here? I don't mean to invalidate the feelings of persons who feel this way, or the obvious support that groups like this present; I am trying to give a voice to people stuck in the system limbo between adult and child.

Hopefully this blog can shed some light on the experiences of a lifetime stuck in the medical system- as it is for me, and young adults in general.
Because fuck knows I can't wait another 6 months to see a psychologist.