I'm Doing the Happy Dance

Month Number 4

Just came back from my check up and low and behold I am healed!!!

Well not quite but, I am getting there.

My EF is now 35% which is wonderful. I am no longer a candidate for a pace-maker (Thank Goodness. Ugly scar on my chest for all to see and a permanent lump, I don't think so!).

I am not out of the woods yet.

My goals for the month of December are to increase my medications, get my EF to 40% and above and to be able to increase my exercise mets from 4.1 to 4.5.

My goals for January is to stabilize, introduce my system to new medications and keep my EF over 45%.

Million Dollar Question

Do I get to go home?

AHHHHHHHH NO

My doctors have agreed that I am to stay in Seattle until my EF is over 45%. I will not be able to fly again until then...so no mini vacations to California and no flying home to D.C..(CURSES)

I have also been instructed to stay off a snow board this winter. Maybe I will take up ice skating or sledding ;).

Now I am tired from doing the happy dance.

NAP TIME!!!

I KNOW I HAVE BEEN AWAY FOR SO LONG

I Actually Have Something to Write About

As of today, I am no longer in CHF (Congestive Heart Failure). I am all dried out. There is no more fluid around my heart, in my lungs, in my digestive area. (I am officially 8 lbs lighter than I was 3 months ago). I cannot imagine that it was all fluid related but it was.

However, I am not out of the woods yet. (I am getting there folks).

Let me explain.

My heart is still enlarged. Not as much as before. Although, my values are still a little leaky, my heart is able to manage the fluid, with a little help from the medications. What does this all mean? I have a little ways to go on recovery. My EF (how well my heart pumps blood throughout my body) as of October 12, 2009 is 25%. When my condition started back in July, my EF was 21.7%. So, I have come a long way baby in just three short months.

Now here is the deal.

If, in the next three months, my EF gets to 35%, I will not have to have a Pace-Marker placed in my chest. Although, that might be just a little cool to have something kick start my heart back to pumping just in-case I put too much stress on my system...lets say during skiing, surfing, or sky diving.

So what does this all mean?

I will have to stay in Seattle for a few more months and continue to follow the doctor's orders to the letter (So, not good news for my husband and I).

A Few Updates

Couple of days before Halloween, I baked 60 cup cakes and a small 1st birthday cake for a new friend. They were delicious! I am so glad that I can still bake. I have to confess that the first batch didn't turn out perfect (12 cupcakes) but, who could tell but me. After that, the rest of the 48 cupcakes turned out great. Now, this did take a lot out of me. In fact, it took so much out of me, see the note below.

Halloween day, I was rushed to the hospital. Apparently, my heart could not handle the pain that "the time of the month" brings and all of the baking that I did the two days before. So, I spent a few hours, in the ER, getting juiced up with morphine and resting.

That following Monday, I decided to fly (Dr. Yeoh said I could) to San Diego to get a little sunshine and enjoy my hubby's company (he was there on business for a few days).

I relaxed, got my toes done, and received a wonderful circulation massage from Phillip. Great hands Phillip!

Although, it was scary to fly (my CHF specialist was not crazy about me flying), I felt that I needed to take a chance. Life is increasingly becoming too short for me not to take a risk once in a while, to spend some time with my hubby and visit some of my favorite places on the planet.

Now that I am back, I am done with flying for a little while. It did take a lot out of me. But, I guess my doctors could say, "We told you so."

Upcoming weeks

Tomorrow is my last day of cardiac therapy. Although, I never reached my goal of losing 15 lbs, being about to lift more than 8 lbs, being able to jog a mile, or get on a stair-master, my heart function did improve and I can at least play Wii Fit Plus (love this game, everybody needs to have this game!) for about 36 minutes at a time.

I will continue to work out twice a week for the next 5-10 weeks at the cardiac center, on my own, with a little bit of supervision (they will continue to check my blood pressure and monitor my progress but, that is about it).

Let me sum up

So, folks, I am still recovering. Slower than I thought but, I am recovering. Now that I am coming out of my dark and grumpy place (I have gained some perspective on my condition and now I am in a better place ;-)) I will continue to update you on the condition of my condition.

Love you all for your support and prayers

HAPPY VETERAN'S DAY

The Worst CT Scan Every

Day: Last Tuesday
Time: 7:30 AM
Where: Swedish Hospital, Basement
Who: Me, the nursing staff, the doctor on call and a really large machine

It has taken me this long to talk about it, partly because it took me two days to recover and the other part because the entire test left me with more questions than answers.

There I was, 8:00 AM laying back on a gurney trying to make light of the situation and entertaining my wonderful two nurses. One, nurse (head nurse) explained what was going to happen and the other nurse (training nurse) carried out the orders.

The head nurse explained that she need to set up an IV Line in my right arm because it was easier for them to get to. I informed them that the veins in my right arm are too small and too frail for an IV. Try the left arm. The vein may roll a bit but, if you enter at an angle and quickly, you should have no problem.
I was ignored. They blew my vein, hit a nerve (ouch!!!) and decided that they should do the IV on my left arm.
After that, I was given a medication (not sure what it was) that would slow down and stabilize my heart. The slower the heart muscle moves, the better the pictures are :).
Well, they administered this drug in 5 mg increments. The nurses felt that the 5 mg should do the trick. Well it didn't. After 3, 5 mg doses, the on-call doctor was called in to check my heart stats. He assured me that I was okay and that we would just wait a while to see if the medicine would work.
Shortly after that, they gave me 5 more, 5 mg doses, the maximum amount of medication that can be given to a patient weighing 200 lbs. I am 150 lbs, so now I am not happy. My heart has not slowed and I am starting to feel a little disconnected from my body.
The nurses are surprised and cautious. I figured, 'at least I am already in the hospital if something happens, right?'
Then, appears a 3rd nurse. She is the nurse who actually pumps in the iodine-containing contrast dye, while taking the pictures of my heart. She questions me about allergies and if I have had this CT done before. I told her yes and explained to her that the dye burns the crap out of my veins in my arm and neck. She felt I was explaining this all wrong. She told me that it doesn't burn at all. How the hell does she know?!
Well, I was all set to go and they told me they had to stop the procedure and let a patient from surgery go in front of me. So they pulled me out of the CT scan room and put me in another room. I think it set me back another 30 minutes. I had already been there for an hour.
Okay, so after a short nap and feeling like I could just stay asleep for ever, they wheeled me back into the CT room. (Oh by the way. I got a good look at the guy who bumped me. He was probably in his late 60's early 70's and had a square clear box on his head. He was unconscious and really pale. I was feeling pretty lucky about right then).
So, I'm back in the CT scan room. Ready to go!!! So here comes the hell-fire dye.
Oh I forgot, right before they pumped me with the hell-fire dye into my veins, they made me take nitro sublingually (under my tongue). I would have to say by this point, I was rather out of it because of all the medication in my system.
This dye burned like a lit up Christmas tree! It was fast, not fast enough for me not to scream out, and direct. The nurse kind of commented, "Wow, okay now I understand what you were saying."
If I could have slapped her I would have but, that would have been counter productive. To say the least, my patience had left my body.
Well, two held breaths later the test was over. 5 minutes! 5 minutes! I had been there for two hours and this took 5 minutes?!
I was so ready to get out of there. I didn't care that I felt like a mack truck had rolled on top of me and parked. I didn't care that the nausea in my stomach was rising to my throat. I wanted out of that basement.
So a few thank yous and a couple of good-byes, I got dressed so fast most of my cloths were put on inside out and I left with my Mom. Walking was a little slow, but my mind was running out that door.

Two days later, my cardiologist told us that he found nothing. No clogged arteries, veins, or calcium rich, fatty deposits laying in or around my heart. Great. So this means, my heart is just weak. Not so great. So he upped the meds and started me on another medication that has kind of knocked me on my bumm. My doctor assured me that he is not finished looking for a cause and that he does not like to lose. Who does, right?

It's great to know that I have an interested doctor however, I find it disturbing that there is no known cause for this, it effects 1 in 200 people of which 68% are Black Americans, and all I can look forward to is taking a lot of medication for the rest of my life.

Needless to say...my doctor did inform me that I can have sex, "not the chandelier hanging kind" (his exact words, not mine) and that I should wait about a year or two to get pregnant.

I have more updates coming later because this past Monday was crazy!!!

Thanks for the support, prayers and thoughts.

Not the Monday Blues

Good afternoon family and friends,

I hope everyone is doing well. Please take a moment of your time today and do something for you. Something that you have not done for yourself in quite some time. It will do you good.

This morning I woke up and the sun was shinning! What? In Seattle? No way, you say. Well, it is a beautiful day. There is a slight breeze and the sun is high in the sky with a little bit of haze (smog, yeah just a little).

This morning I went to cardiac therapy. This would be my 3rd visit. Today, I was more tired than usual and a little less than enthusiastic about spending an hour in a gym working out with 6 men over the age of 67. It can be really depressing knowing just a few weeks ago, I could run, jump, dance, bake, cook, bike, swim, drive, walk by myself, go to Costco without sitting in that cart, make love with my husband (all those nights he said no, I should have forced him lol) just to name a few things.

If I think about it too much, it can get a little depressing. So as of late, I have been trying to put together some ideas for a vegan heart healthy (low-sodium, low-fat) cookbook. I know for most of you, vegan is not your favorite way to eat. But, you would be surprised at how difficult it is to find convenient vegan food that is low in sodium.

I just want to do something different but I have not figured it out just yet. I was going to finish the cookbook I had already started but most of my recipes are on little pieces of paper back home in DC, scattered about the house.

I know I have some new recipes in me however, it is difficult to create a recipe when you cannot even test it. So, I will keep you posted.

Thanks for reading

Feeling Like I'm Out to Lunch

Good Afternoon My Good Friends;

I know, I know...it has been many days since I have given you some updates on my health status. To tell you the truth, I have no real excuses. Sure, I have been tired. Sure, my computer has crashed about 20 times in the last week alone. Sure, I am visiting the hospital almost every day. But it takes just 5 minutes to write something. So I am promising to make more of an effort to write (at least for my own sanity).

So let me tell you what as been going on in the last two weeks.

Dr. Rebecca Duke, my wonderful primary care physician, decided that she would run comprehensive blood tests on me. She covered Lyme's disease, Celiac disease, nutritional and vitamin deficiencies and toxicities and some other tests that I had never really heard of. She has not left any stone unturned. Well, I have those results sitting right next to me and I have to tell you that they found nothing amiss. Other than my BNP (Brain Natriuretic Peptide) levels being high (1300), every thing is normal. Sigh. The good news is there is nothing wrong with me. I am perfectly health. The bad news, it could be that I just have a not so happy heart.

So how do we get it happy?

More tests? Well there is this one test that Dr. Howard Lewis, my wonderful cardiologist, wants to have done. It's called a CTA (Computed Tomography Angiogram). What does this test do, you ask? Well, it helps identify disease and aneurysms in the aorta both in the chest and in the abdomen, or in any other major blood vessels, sample blood from specific veins in the body to detect any endocrine disease and help detect any other blood disorders or blockages.
Well, I was suppose to have this test done on Tuesday but the Medical Director, John Tornow from TriWest Health Alliance, has denied the procedure. Dr. John Tornow says that "the clinical documentation received does not support the medical necessity for the service(s) requested." Hummmm. I am currently in stable heart failure with no cause. Currently, three doctors are looking for the cause of my heart failure because if they find a cause it could help them treat me correctly and successfully. Thereby saving my life or at least increasing the quality of my life.
I am not sure what Dr. Tornow knows or doesn't know about Acute Idiopathic Dilated Cardiomyopathy but I am sure what he doesn't know is I will call his office every day and harass his secretary, as well as send a letter to his office every day, until he over-turns his denial decision. I have so much time on my hands, it would be my pleasure to do this. I have plenty of money for stamps and unlimited minutes on my cell phone. (Also, all three of my doctors are presenting their appeals as well. So this should help.)

For all of you who think that just because you have health care, a great health care coverage, it can all be taken away from you or denied at anytime. Here I am with a condition that can make my heart stop at anytime (and kill me) and these fools are making decisions that keep my doctors in the dark about my diagnoses. I could scream but, yawl wont hear me.

Great News

I started Cardiac Therapy this week

I started on Wednesday. Lori is one of the in-take nurses for the program and I think she is too cool. We talked for three hours. She showed me some pretty interesting documents and took my measurements. I was in for a big surprise. I have finally hit 150 lbs. This is a great thing. When I was admitted to the hospital on July 7th, I was 157.3 lbs. Now I know I have not lost much weight, fat...maybe I have lost a little muscle mass (it shrunk because of lack of use I'm sure), but this means what ever fluid that is in and around my internal organs is coming out. This is a great relief. Now the bad news. 45 lbs of me is pure fat and I do not mean phat. this means, I have got a lot of work to do. Of course, I cannot do what I would normally do, get in the gym 7 days a week and lift until my arms and legs fall. So I will do what the therapists say and wait until my heart heals a little more before I get my burn on.

Yesterday was my first workout day

OH BOY

My therapist, Lindsy. Lovely girl. She tried to kill me. Well, she didn't know she was trying to kill me. She worked me out and afterwards that I slept for 3 hours in the back seat of my Mom's car, while my Mom was running a very important errand. I am sure all the people walking by were thinking something was wrong with me. Now I have to say that I normally have a love hate relationship with sleep. I hate to sleep (thinking that I am going to miss out on something) but, I love the way I feel after I get some sleep (not nearly as grumpy).

It wasn't like she really worked me out. I did 7 minutes on the treadmill, 8 minutes on the stationary bike and 8 minutes on a recumbent stair stepper. Then we did some light weights (3 lbs). I felt fine. In fact, I wanted to continue. But, I guess my heart had other plans for me.

Now today

My workout was much easier. Terra and Lisa are my new PTs. They told me that I was worked out too much yesterday and to expect my sessions to be much slower. I was encouraged by Terra. She told me they had a patient earlier this year that improved her heart efficiency by 40%. I am so hoping for the same results. That means I would be close enough to normal that I could get back to work and starting on that family my husband and I want to have. Now interestingly enough, she was an airline attendant (flight attendant,steward) and completely healthy. She was also diagnosed with Acute Idiopathic Dilated Cardiomyopathy with no known cause. Maybe there is a connection with high altitudes and some type of reaction (allergy or something that would cause histamine to increase in the blood stream). Just a thought.

Oh Boy It's Thursday!

Sorry, I have been away for a little while. I have not been up to writing. Actually, I have not been up to too much. This past weekend was a little difficult for me.

My parents went to Canada and left me in the care of my brother and niece. Not that I received poor care, it just wasn't my Mom's care. I was feeling unusually bad...probably because of the visit from the mail man (post man, curse, etc); at any rate, lets just say, I was not feeling too good. My pressure was up, 123/94 and my temperature was 99 degrees. Now normally this would be an okay thing. But my BP's have been hovering around 85/66 and my temperature hovers around 97.1 religiously. So, needless to say...I was under par.

Interestingly enough while on my quest for vanilla pudding (Kozy Shack, all natural, hormone free, not Jell-O pudding), which is impossible to find in this city, my Dad took me for a car ride late last night to help me find some pudding (I have been craving it since my hospital visit). Well, my Dad listens to XM (Sirus) Classic Radio. This station plays old Radio shows, like "The Shadow" and other radio shows from the 30's, 40's and 50's. So, interestingly enough, we heard this commercial about Wedding Blush. "It makes you feel gay when you are feeling under par. Apply the pink blush to your checks, and all is right with the world." What ever happened to those days when you could just wash away your troubles or put on some blush and all your worries just go away...I need some of that BLUSH!!! Point of this??? The use of under par, describes me perfectly.

Well folks, I had my doctor's appointment this morning. And to tell you the truth, everyone is still very helpful and very confused. Dr. Lewis, has now begun reading journals, articles and European studies to make sense of my interesting predicament. I am so glad that "Johnny's on the case". I am also happy to know that I am contributing to the education of some of the top doctors on the west coast.
So today I am a step further towards cardiac rehab. Hopefully by Monday, I will begin my personal wellness program towards a healthy and happy heart :). Today, I also got my blood drawn. I am hoping the my BNP's (see note below) and liver enzymes are back to or close to normal. If not, we got a problem. Well, I got a problem. We in the sense, me and my heart have a problem. I am sure all is well because actually I do not feel all that bad. Just tired and my upper gastric area is a little under the weather. Of course, this is exactly how I felt the day before I went into the hospital. So who knows. Heart conditions are the silent killer.
Dr. Lewis is also ordering a comprehensive CT scan. He says my insurance may not pick it up. Well, if Tricare knows what I know, they better step up to the game. The doctor wants to rule out any coronary heart disease issues. If he finds something, they will know how to treat it. If he doesn't find anything, back to the drawing board.

BNP's help diagnosis heart failure and the severity of that heart failure. In a normal patient the level is below 100. When I arrived to the hospital is was up to 1600. When I left the hospital the level was down to 600. So I cannot wait.

As for the rest of my day: I have watched the Blue Angels practice in what seems like my parents own back yard. I will post photos later this weekend. I am getting my hair done today; the heat has not been nice to me or anyone else in this city. Also, my Husband may be arriving in the morning from DC and I want him to see me looking half way like the woman he married almost one year ago. Our anniversary is on August 5th!!!
I wanted to treat my parents to the Cheesecake Factory since it is National Cheesecake day and the cheesecake is 1/2 off (this offer applies every where). But, my Dad wants me to save my money. Shoot, I want some cheesecake, even though I need to lose about 13 more pounds (doctor's orders). I have only lost 2 lbs since the hospital visit. I was hoping that I could share a piece. That way I would not consume the entire 1200 calories in that one slice.

Have a beautiful day!!!

I LOVE SWEDISH HOSPITAL

Yesterday was a pretty good day for receiving information among other things.

I met Dr. Rebecca S. Duke, in her primary care office. Now I officially have three doctors working on my case. I am thrilled that she was able to provided me with some level of comfort.

Oh don't get me wrong, Dr. Howard Lewis, is wonderful doctor, both in knowledge and in bedside manner. But, it felt good to speak with a woman doctor who might be a little more sensitive to the physiology of the female anatomy.

Dr. Duke and I spoke about the sticky foamy...well you know from the last blog entry, and she wondered if I had aspirated or had some extra fluid in my respiratory system. No way of telling at this point but, she did provide a couple of explanations. Hopefully, it will not happen again.

Dr. Duke also informed me that Dr. Raybourn Lewis and Dr. Howard Lewis are the best in Vascular Care in the Northwest so, if anyone could figure it out, they could.

So currently, I am still waiting to be approved by my health care plan (TriCare) for Cardiac Therapy (which all doctors are demanding I have) and I am still taking a few medications (Lisinopril and Carvedil) to regulate my blood pressure and heart rate (which seem to be happening). Where it was hovering in the low 70/60's now hovering at 90/70's and my heart rate has stabilized in the low 80's. I feel pretty tired most of the time and a little headachey but that is to be expected with the medicine and low blood pressure.

In 4 more weeks, Dr. Lewis will run more tests on me to see if there is any improvement. I will keep you posted.

Just a few shout outs!!!

Dr. William J. Raskoff: Kaiser Hospital San Fransisco, Dept Head of Cardiology. He was thorough!!! If you ever need cardiac care, Kaiser Hospital is a pretty cool place to be. Dr. Raskoff and his team really gave me great care. They were attentive and very knowledgeable. Also, the hospital food was not bad. In fact,the vegan food was pretty dog-gone good. The last day they let me have a Kozy (organic) Pudding Snack cup. You have no idea how wonderful it is to have a pudding cup after 6 days of low sodium, no sugar meals.

My Parents and Family and Friends in the Bay Area: YOU ARE WONDERFUL!!!! You came to the hospital to see me :) and I want to let you all know that all of you have helped me in my healing process, tremendously! Laughing and talking and sitting with me was the best medicine ever.

Rhea!!! Being 8 months pregnant and making the trek to the hospital, twice, you are amazing.

Lotus Garden (on Franklin in Oakland) WOW WEE!!! Great Vegan Food. I could eat there everyday, if I lived in Oakland (lol). Check it out bay area folks.

Costco is a great place to get your medications filled. Although, my medical coverage covers the RX, they were still very inexpensive. Less than $15 for all three medications I am taking.

Alaska Airlines!!! The flight attendants were wonderful. It might have helped that I was sitting in first class but, they were so concerned and attentive. I think they are my favorite airline, next to Virgin America.

My Parents! Mom and Dad, you guys are the greatest. Bringing me home with you and taking care of me and changing your plans and your schedules for me to be here in Seattle. Kisira for letting me sleep in your room, in your spacious bed and drawing me such a wonderful picture "Hey I Love You Too" Eddie (my Brother), for just checking in and keeping up with me and promising Mom and Dad that you will watch me when they are not able to.

Stephanie, Debra, Kim, and Carol Jean thank you for your support and information seeking spirit. Keep it coming!!!

And Finally (I saved the best for last) to my Wonderful Husband!!! You are my rock baby. I am so blessed to have you in my life. I appreciate you working hard and holding it down while we are away from each other. I love you so much that my words are just not enough. I miss you terribly. Being away from you at such a time is challenging and heart breaking for me. Thank you for sleeping in the hospital bed every night. Thank you for being my voice on the phone and to the hospital staff. Thank you for being the best Husband.
You are a blessing to me. I cannot wait to see you...hopefully soon than much later. It's already been too long.

Windy Wednesday

Bon Dia from Seattle Washington

So I guess everyone is wondering what really happened. I am still trying to figure that out.

This morning I spent some time reading over my first cardiologist's notes and report. I think I am still in shock. I still have not processed a lot of the findings. When I was admitted this is what they found: Cardiomegaly, pulmonary vascular congestion and clinical congestive heart failure.
In a nut shell, my heart is in a weakened state and is enlarged: Advanced, dilated cardiomyopathy.
So if there is anyone who can help me sort through these diagnoses, please contact me.

It happened last night. I was sleeping deeply, I am sure, and I was awakened by my hands, face and face being extremely wet and sticky. My heart was racing and I had a slight headache. I felt pretty alert but my body was very tired. So much so, that I really could not move. I believe maybe 15 to 20 minutes had passed and I still was not feeling better so, I got up out of the bed to go to the bathroom. I had sticky foamy white stuff all over my hands. Okay, I know this is a little gross to read however, I thought maybe a large spider was trying to cocoon me while I slept.
I then realized it had come from my mouth. What the...?!
I cleaned up and went back to bed. I had some slight upper chest pains but nothing significant. It just felt like I had done a couple of bench presses.

Now I feel pretty okay. Well, I feel better than I did and I am not covered with sticky foamy stuff. I do have a headache, probably due to the medication. Now I did find a very large spider web inside the lamp shade next to the bed so maybe I was being attacked.

This afternoon I am going to concentrate on walking, stretching and getting my toes done. I do have a doctor's about this afternoon so I will keep everyone posted.

The sun is now shinning in Seattle and the temperature is a cool 70 degrees. It is a blessing to see the fog and clouds roll away to such beauty.

It's been almost 2 weeks....

It has been almost two weeks since I came down with this strange heart condition. Idiopathic Cardiomyopathy. I say strange because no one knows why my heart is not functioning the way it should and heart condition because now I cannot run, jump, bike, play Wii, have a baby, bake, roll around on the ground without damaging my heart. Sigh

I am staying at my parents house in Seattle, Wa. The house sits perched on a hill, over looking views towards the south area of Lake Washington. This view is absolutely fabulous!!! It is a calming and happy scene.

Oh don't get me wrong. I need calming and happy views and I appreciate that I am able to experience the calming and happy views however, I am feeling like I am trapped like a caged kangaroo. I cannot walk anywhere by myself, I can no longer drive; going to the grocery store means sitting in a motorized cart; cooking has become such a strain that my dishes have half the love in them (and you know that can't taste good).

What really gets me about this whole thing...I am away from my Husband. He is in D.C. working and taking care of our family stuff. I know it is temporary however, it is difficult to be away from your love and best friend. Especially when I am this restricted.

Please forgive this first posting. It is more as a start for me. I am not ready to get too personal and too technical about this "condition." I will try again later.

Thanks for your support and prayers!!!