how to contact ME in the hospital

If you would like to contact me while Im in the hospital, you can go to
UCSF Medical Center - ucsfhealth.org and "send a patient a message" link
Call (and ask for me/my room)
(415) 353-1664 (7 a.m. - 10 p.m)

Or send mail to
505 Parnassus Ave., Box 0208
San Francisco, CA 94143-0208
Please put "Patient Mail" on the lower left corner of the envelope

Time is going fast

I was asked how I'm doing since time is coming for the surgery fast? Honestly I'm stressing about it. sometimes I sit alone in the bathroom to cry. Other times my mind/heart just races and I'm not sure of what exactly I'm thinking our feeling. Time seems to be going so fast now that its August. Less then 2 weeks away and I can't make plans as to what I want to do. Things are so cloudy! I pray, but I'm unsure of what I'm praying for.

So many things are roaming through my head and mind everyday. To put it all together, I'm scared!

Eloni is a Model!

Yes guys shes an official model/actor,
On July 18th, we took our baby girl to a Agency Casting after I had sent out her info and pictures. A few day later I received a response that they wanted to meet her. We took her to the meeting and she did absolutely fabulous... She communicated well, she had everyone (including other potential talents) in Aah!! Her father and I were overly proud of her. Three days later we got the word that they wanted to represent her as her Agent for Print/Commercial.

Through all the current trials torn at us, to get such great new has been beyond a blessing. After my surgery I will be able to get more into it and have her go on jobs. This is an amazing opportunity that I hope great things come for our Princess....

From Dark toLight

I realize that most people will read some of these post and not get it, not understand the purpose... feel bad for me or even themselves. DON'T! this isn't a pity-party situation, its a journey, a journey that will have positivity and negativity... It's life. myLIFE! there may be something I say or do that might spark something in you. Feel free to comment! Good, Bad or Indiffernt. There is no judgement! I'm writng my story, not for any self-fish reason, because as you can see there's not much boasting I can do. It's an opportunity that I hope will help not only myself get through this but put have a voice for someone else.

Maybe you know someone who has Cancer, a Learning disability, or whatever... and don't know how to help. I hope to be able to shine a light for someone with a disease/challenge. Doesn't have to be health related, could just be something a person is facing. You can be going through something yourself, and don't know what to do, where to go, who to turn to..... I hope to help! By showing you that if I can make it, so can you.

I know these aren't happy topics, fun events or whatever..... but it is a journey through life. Don't worry it wont all be this "deep"! I want to find my way back to LIFE. imRED! That means something... Time to find out exactly what! ;-)

Join, Comment Etc....

Suffer inSilence? (a hard one to write)

I've spent a lot of time crying and praying, more so for a miracle, and a change(good)! Weirdly enough I feel self-fish for asking God for such things. I know he's watching over me and my loved ones but that good oh "human" in me prevents me from allowing God to take control. I feel like others do have it worse then me, and who am I to ask for such things, there's a little baby boy whose fighting to take his first breathe on his own, someone is out there with no chance at life..... Why should God give me a miracle? What have I done to deserve such thing? I know the "logic" is wrong, but at the time it honestly feels right. Then again I've been mad, angry, sad, hurt, letdown, frustrated.... the list could continue. I feel slighted! At who? I haven't figured that out just yet. All I ever wanted was to be normal! That's not to much.... right?

Only two people know everything about me, from my happiest moments, to my lowest. God of course is one, and the other is a very special person to me. My whole life I've struggled with the dreaded dark DEPRESSION, something most people don't like to talk about, and at one point I hated the word myself. I always felt like the darkness was following me throughout my life. Just wouldn't let me get over the hump and stay happy for to long. It isn't easy, it has no name, it comes back/forth - in /out, it hovers over me, it calls my name, it nags me like none other....

Depression, what a sick place to be for a 25 years. Without much help feeling like a cloud is constantly over you. Not knowing what to do, who to call, what to say... Feeling like if you tell someone they wont understand, they'll talk about you, point at you, mock you, "diss" you. Or tell you things you already know and don't want to hear. So suffer in silence, hide behind a "hard shell." Wanting someone, who is genuine, caring, loving, supportive, understanding, who will listen, & will attempt to help (even when they know not what to do themselves.) Sometimes needing flesh to curve the loss you feel, the pain in your chest, the lonely moments. A shoulder! where is that "flesh" shoulder? Giving everyone everything you wish someone would give you.... Needing to feel needed, because you need someone yourself. Attacks not only mental, physical, emotional, and most of all spiritual.

"NO, I'AM NOT CRAZY"

Being depressed doesn't have a face, a particular look, or a sound... it just surrounds your life. Don't get me wrong I had great moments in my life: I smiled, laughed, danced, felt genuinely good/great at times. It pushed me to live for Happiness! I can say that one of the best days of my life was on 090504. To have someone come into my life and give me the world, care about me in a way that fulfilled that void I have always had. To bring me year-round sunshine when the tornado's came crashing through. Depression who? Sadly I got wrapped up in flesh, and it had its way with me. Insecurities set in strong, Fear set in even stronger most of all Doubt was my number one fan. I knew the signs of it but couldn't stop it, I knew where I was headed because I had been there before. But it was like a fast moving train there was no stopping it without causalities. I don't know why I was dealt these situations, I honestly don't care anymore.

As I get older and look at myLIFE ie; my daughter (the one they said I could never have) I realize I need to fight that demon. I continue to fight that bastard as hard as I can, even if he just won't leave. Through all of this the birth of my baby girl (052508), changed everything about life to me - It ties in being the best day of my life!! Got me to a place I never thought I would ever be lucky enough to get. She was/has been my new sunshine. My reason for breathing! I hate to give her that "job" but in all honesty shes the reason for what they call "strength." The days where I've been beaten up so bad, I look at her INNOCENT face and hear her sweet voice (whether yelling/crying) lol! and I'm reminded of life. I realize I don't have to suffer in silence anymore. I can put a face to Depression, Sadness, Hurt, Pain.... Why not? Why not be a voice for the voiceless, I didn't ask for these trials. But they don't have to beat me right? I have a jolt in my HEART today/tonight, I may cry, fight, yell, & scream tomorrow. But right now I'm Hopeful..... and that's a step I didn't have yesterday. I'll take each moment for what it is, and pray that it gets me through this most difficult time.

I may have setbacks, because once again.... I'm human! I have nothing to prove to anyone but myself. It hurts like hell, I can't lie. But right now is a good moment! I hope to only have more of those. Don't feel sorry for me, PLEASE (I'M BEGGING) but be encouraged to look over your own life, and take it back. You don't have to suffer in silence, if no one else will listen. I HEAR YOU!

expectingRED

There is no easy way around this surgery, the idea of having my chest/sternum broken and heart cut open, terrifies the hell out of me, mentally, physically, emotionally and spiritually. It's a feeling that is really in describable to say the least.

After having myRED scar for 18 years, I barely got over that one, but because of the love I was shown for someone so near and dear to my heart. He allowed me to be comfortable with it like no one ever before. But the fact that I will have to endure yet another huge scar on my body honestly saddens me. I hate it! I'm mad over it, I know I should be proud, because it symbolizes LIFE, but deep down all I can think about is the fear.

The one permanent emotion of the inferior man is fear - fear of the unknown, the complex, the inexplicable. What he wants above everything else is safety. ~Henry Louis Mencken

All the Bible lessons, church sermons, explanations, music and etc hasn't been enough for me to set aside that fear. "I amRED but RED isn't me." I know it, I believe it, but for some reason its just not enough right now. So to do this blog through my process and hopefully my progress really is going to be inspiring. I know there will be good days and bad as there are now, I just want to build a better positive attitude from here on out.
The surgery itself scares me as well, more then anything else medical.

First on August 18th, 2011, I will go to UCSF and take a bunch more test, go on a tour, talk to the Anesthesiologists and nurse. Make a plan! A week of anxiety I'm sure will kick in to overdrive, and on August 24th 2011 I will go back to SF and stay the night because I have to be at the hospital at 6:00am on the August 25, 2011. They will sedate me and hook a million things to me then begin the actual surgery. They will STOP my heart before surgery, and then BREAK my STERNUM, cut open my heart and begin the repair. The surgery can take up to 3-5hours or more depending on severity, or any complications.


After the surgery I will be in ICU for a couple days and begin the process of recovery, then to a room where I will be for 4-5days. They will have me do a lot of walking, sitting up, talking, and slowly but surely build my strength to go home.

theRED decision

To Repair or Replace

Surgery is required for severe mitral valve regurgitation (MR).
Surgery for MR is recommended when you have symptoms of heart failure, or when your ejection fraction drops below 60% and/or your left ventricle is larger than 40 mm at rest. Surgery for mitral valve prolapse (MVP) is only done if you have mitral valve regurgitation.

Both valve repair and replacement are typically open-heart surgeries. There are minimally invasive types of surgery, but because of my particular problem, I do not qualify for this kind of surgery. The decision between repairing or replacing the valve depends on the type of damage to the mitral valve.

For instance, repair is more successful if there is limited damage to certain areas of the mitral valve flaps (leaflets) or to the tough fibers that control movement of the mitral valve leaflets (chordae tendineae). But replacement is usually preferred for people who have a hard, calcified mitral valve ring (annulus) or widespread damage to the valve and surrounding tissue.

Ring Annuloplasty — The annulus, or ring-like part of the valve, is tightened by placing a flexible ring of metal, cloth or tissue around the damaged valve.

Valve Repair — The damaged leaflets, chordae, and/or papillary muscles of the valve are surgically reconstructed.

Surgery involves the removal of the badly damaged valve. The valve is replaced with a plastic or metal mechanical valve, or a bioprosthetic valve, which is usually made from pig tissue. The damaged valve is cut out, and the new valve is sewn into place. (Means taking Blood thinners forever)

My surgeon believes that I will be able to have a repair done, which is great to know. It's what he specializes in and I'm hoping that once he get inside that will be the case. 





aRED wakeup call

Within 6 months of what would be the most trying year of my life, I realized that I needed to care more about my health. Constantly going to see my new Cardiologist and taking test, during this I never thought I would be in a situation where, I'm hearing "OPEN HEART SURGERY" as a often statement. Because way to much blood was going in the wrong direction.

So since I became symptomatic, shortness of breath, fatigue, chest pains, dizziness, swelling of the ankles or legs, cough, heart palpitations and etc. It was obvious that something wasn't right, and needed to be looked into. My doctor kept it real with me and uttered the words numerous times, "you need to definitely start thinking about SURGERY." He attempted to clean up the statement by letting me know that it wasn't emergency, but would definitely needed to be done within a year or so.

Knowing none of this is his fault and that he wants the best for me and my life, I know understood his sincerity. He was very sad to express to me that at 25 years old I'll be having open heart surgery. The sound of it coming from his mouth, the look on his face, the fact that he had me come down to sit on a chair in front of him instead of the bed. I knew he cared! Him being so personable meant so much to me, and made things a lot easier. Of course I knew that things were going to start moving fast, and boy did it ever.

I took lots of test once again, including a "stress test" on a treadmill as well as an "ECHO". In June I had to also have a Transesophageal Echocardiogram (TEE) done: An ultrasound probe that went down my esophagus/throat. (Sooooooooooo painful)!!! Which all confirmed that it was time to fix my valve, before it got to bad.

In June my Cardiologist found a Surgeon at UCSF for me, where he looked over everything and confirmed that it was probably time. We scheduled a consultation which was on July 29th. He went over exactly what things would entail and where we will go from here.  Since it was not an emergency, he asked me when I would like to have my surgery which I replied, "As soon as possible." Knowing that no matter how soon or late I have this done I will never be ready, but this was I can get it over with.

On the following Tuesday I received the call, Aug 25, 2011 is my scheduled date!!!

aRED couple of months

After going through a lot in my life for 4 months, which in itself was the hardest thing I had to go through, at least that's what I thought. At the end of January I had some weird "spell", where I was extremely fatigue, nauseated, short of breath, chest pains, numbness down the whole left side of my body, headaches and overall just felt "yucky". I was finally able to go to the doctor after over 2 years of not having any health insurance because of my "pre-existing conditions" with my heart. My appointment wasn't until February 16th with my general practitioner. I figured the symthoms I was feeling were just stress related. After a week of feeling this way and not being able to do much, until one late night/early morning, it got beyond anything before, I was awoken out of my sleep by not being able to breathe, or catch my breathe. My body felt limp and like it was crashing down. I just couldn't take it anymore, I took myself to the urgent care after a phone call to the Nurse Hot-line. The UC did a million a one test (at least that's what it felt like). X-rays, EKO, and blood work. All to come up with Congestive Heart Failure, Fluid in the Lungs and Heart, & enlarged Heart.

After all the test they could do at a Urgent Care Facility, and constant communication to and from a Cardiologist on the phone, they finally decided that my best bet would be go to the ER. I had my then 2 year old daughter with me, who was a complete angel while Mommy was going through it. Since I was able to drive and the pain wasn't extreme, they allowed me to drive to the ER myself, which is 15mins away in another city. I got there and everything seemed to go so fast.

I was extremely scared and had horrible anxiety to everything. They did more test and explain to me, & my daugthers father everything that was going one. At one point they were deciding on what to do for me. A particular doctor came to my side and actually said to me, "look sweetheart, you don't have a 25 year old heart." Then proceeded with they were going to admit me into the hospital. Fear beyond fear set in and I broke down.

I couldn't understand why this stuff was happening to me, I've gone my whole life trying to be normal, and healthy. Going to the doctor's constantly, being told I wouldn't see teenage years, to playing sports I was never supposed to be able to play, then taking away my ability to continue to play sports in high school, and putting me in some "lame" PE class, just to get credits, telling me to never have children because my heart wouldn't be strong enough, the list goes on and on. I went farther then the doctors ever could imagine, but not without a fight! I worked my butt off to be what I called "normal" & To have it all come crashing back down on me yet again in my lifetime. WTH!!!!! I couldn't take it, but I had to.

I stayed the night in the hospital, and was told the same things, they believe I had; Congestive Heart Failure, Fluid in the Lungs and Heart, & enlarged Heart. Since I had an appointment coming up very soon I just tried to keep a low profile once they let me go home. I went to the doctor and of course like always I had to go see a new Cardiologist. In my head all I could hear was bad news! I went to see him within a week or two, he went over my health history and explained to me that I have become "symptomatic" and because of that it was time to get serious. Needless to say things got serious, and FAST.....................

What makes meRED

What Is Mitral Valve Prolapse?

Mitral (MI-tral) valve prolapse (MVP) is a condition in which the heart's mitral valve doesn't work well. The flaps of the valve are "floppy" and don't close tightly. These flaps normally help seal or open the valve. Technically, when the left ventricle contracts, one or both flaps of the mitral valve flop or bulge back (prolapse) into the left atrium. This can prevent the valve from forming a tight seal. As a result, blood may leak from the ventricle back into the atrium. The backflow of blood is called regurgitation (re-GUR-jih-TA-shun).

Much of the time, MVP doesn't cause any problems. Rarely, blood can leak the wrong way through the floppy valve.

The sound my "un-normal" heart makes

Palpitations (feelings that your heart is skipping a beat, fluttering, or beating too hard or too fast) 

Shortness of breath

Heart enlargment 

Irregular heartbeat (Murmur) 

Continuous Cough  

Fatigue (tiredness), dizziness, or anxiety 

Migraine headaches 

Chest discomfort

Swelling feet/ankles 

Fluid in the Lungs 

Just to name a few!

MVP doesn't always cause backflow. In fact, most people who have MVP don't have backflow and never have any related symptoms or problems. (Lucky) Their mitral valves still can form a tight seal.

Backflow can get worse over time. It can change the heart's size and raise pressure in the left atrium and lungs. Backflow also raises the risk of heart valve infections.

Medicines can treat troublesome MVP symptoms and help prevent complications. Some people will need surgery to repair or replace their mitral valves.

Diagnosing MVP is more precise now because of a test called echocardiography (EK-o-kar-de-OG-ra-fee). This test allows doctors to easily see MVP and detect troublesome backflow.

As a result, researchers now think that less than 3 percent of the population actually has MVP. They believe an even smaller percentage has serious complications from the condition.

Most people who have MVP have no symptoms or medical problems and don't need treatment. They're able to lead normal, active lives; they may not even know they have the condition.

A small number of people who have MVP may need medicine to relieve their symptoms. Very few people who have MVP need heart valve surgery to repair their mitral valves. 

Refence:
National Heart & Blood Institute Disease & Conditions

MyRED Background

I was born with a Congenital heart defect called; Patent Ductus Arteriosis:
             At birth, the placenta is removed when the umbilical cord is cut. Baby's lungs must now provide oxygen to its own body. When the first breathe is taken, the blood vessels in the lungs open up, and blood begins to flow through to pick up oxygen. At this point, the ductus arteriosus is not needed to bypass the lungs. Under normal circumstances, within the first few days or weeks after birth, the ductus arteriosus closes and blood no longer passes through it. Most babies have a closed ductus arteriosus by 72 hours after birth.
           In some babies, the ductus arteriosus remains open (patent) and the condition now becomes known as patent ductus arteriosus (PDA). The opening between the aorta and the pulmonary artery allows oxygen-rich (red) blood to pass back through the blood vessels in the lungs.

 There are different ways to repair this issue, but because of the symtoms that occured, the doctors decided it was best to surgically repair mine.

Symptoms:

• fatigue
• sweating
• rapid breathing
• heavy breathing
• congested breathing
• disinterest in feeding, or tiring while feeding
• poor weight gain

After a couple months old I had to have my PDA repair, in a surgical procedure. There are two types of procedures to close it but I had a PDA ligation, which is performed under general anesthesia. The procedure involved closing the open PDA with stitches or clips in order to prevent the surplus blood from entering my lungs. I stayed in the ICU and the rest is history.

Why I started this blog..

Through this difficult time I learned that the best way to get through it is to express myself and what I'm going through. I hope that I can touch someone, in some way and that by chance people will learn to take better care and control over their own lives. So come on and take a ride with me through this journey, it wont be easy but it will be worth it.