A Day at the Zoo

 Today is Friday, and I had my follow-up with the LVAD team, along with a chest X-ray, and blood work.  When I met with the team, Kevin hooked me up to the power source and started looking and recording numbers from my pump.  He discovered on June 19, my pump flow had decreased from 4.5 to 2.2.  Normally in a situation like that, the pump would alarm very loudly, and then we would contact the team.  However, my pump did not alarm, and that is certainly a scary thought and feeling.  Kevin swapped out my controller, so everything should be okay now. 

As far as my blood work, I was high on my INR (coumadin level) and low on my potassium.  This past week I've felt several of the PVC's (irregular heart beats and/or palpitations), which I found out was due to the low potassium levels.  Some minor adjustments to my medications, and it should be better in a couple of days.

I have not heard anything today from Dr. Vega about my chest x-ray, however I did have the opportunity to look at the x-ray and saw that my left lung is still retaining fluid.  (I was unable to get the x-rays to post).   Hopefully Monday I will have good news.

After my clinic visit today, I walked over to the hospital to visit with Mr. Walden.  Mr. Walden is a LVAD patient who received his pump 3 weeks before me.  He is such a sweet heart, and he's grown near and dear to my heart.  I first saw him in the ICC unit when I was transferred to Emory.  He was in his bed, weighing only around 95 pounds and barely alive.  I honestly didn't think he would ever make it out of the ICC.  Now he's doing great, walking everywhere, gaining weight and feeling so much better.
I also got to visit a young man today diagnosed with cardiomyopathy, and heart failure.  He is scheduled for the LVAD surgery soon, and had lots of questions.  I talked with him for about 30 minutes and just tried to encourage him and answer any questions he could come up with.  It's nice to know that other people out there are sharing the same types of fears and have similar questions.

After all that.... I had the greatest afternoon date with my nieces and my boys at Zoo Atlanta.  The weather wasn't too bad, and the crowd was light.  Kasen and Kuper had a wonderful time, even though we have season passes and they've gone several times, and I think Kaylee and Kennedy had fun (except for the smell).

I hope everyone has a wonderful weekend, and I will post again as soon as I find out more info from the Dr. about the fluid.  Thanks again for all the many thoughts, prayers, and well wishes.

Monica

Is the Lung Half Empty or Half Full?

Just a quick note to say Hi, and thank you for all the many thoughts, prayers, well wishes, and messages.  It will be 6 weeks tomorrow since surgery, and I am feeling better and stronger everyday.  My drive line is still trying to heal up, and causes me the most pain on a daily basis. Because we have to change the bandage daily, the area around the line gets wet, then we have to bandage it back up, which causes it to stick to the drive line area.  So....when that happens, it feels like someone is burning my skin, YIKES!!  (So there, I'm done complaining now).

I have the wonderful pleasure of my mom staying with me 24/7, and since all this has happened, we have been extremely blessed to have her.  She is an amazing person, that words can not even begin to describe.  Last night I had the opportunity to sit with Mom and Darren quietly and listen to funny stories of me in the hospital while on Morphine.  Now, while I was in the ICU, we discovered after about the 3rd day, that I was allergic to Morphine, due to cat like claw marks from my waist down to my toes.  In the ICU, we found out they wouldn't allow cats, so we chalked it up to ME clawing myself, which in turn made for several uncomfortable days.  (Just a few more funny statements from me on morphine and I'll get  to the lung thing, I promise).  While in the I CU, on the most evil drug morphine, I told Darren I had won the lottery, I was reading books, and eating lots of food.  I told my Mom we needed to go to a huge party, and we were going to be late, I turned imaginary pages of my imaginary books I was reading in my sleep, and I kept searching for her to feed me, all while sleeping.  I would wake up and tell them I was just pretending.  HA!!  They really thought I was funny, but didn't laugh at me until last night.  (Thank you Darren and Mom).  

Now to the lung thing.... I have a Dr's appointment tomorrow for a follow-up, where they have scheduled another chest x-ray.  I am praying, and needing all of your prayers, that the fluid in my left lung is no longer half full. Unfortunately, if there is still fluid, I will probably be admitted into the hospital, where they will insert either a chest tube or extremely long needle into my back through my lung to drain it.  Now at this point in my life, I am really over enduring pain, and from what I've been told, it's going to be painful. (If anyone know differently, PLEASE let me know). I will be able to give more information on my lung tomorrow.  Just wanted to let everyone know I need a few more prayers to ease some pain.  Thanks again to all of you for your support and many prayers.  I really couldn't do this as easily without you.  God Bless all of you, and I'll talk to you soon.  

Monica

June 16, 2011

Finally I'm getting around to updating my post...a week late.  Oops. :)
Last Friday, June 10, I met with the LVAD team, and the surgeon to discuss the fluid still in my left lung.  When I left the hospital, the fluid was filling only half of my lung.  When I had my follow-up a week later, my left lung was completely full of fluid.  Dr. Vega was very concerned about that, and scheduled me to come in the following week to have another x-ray, and the fluid was back down to half.  I have another appointment on Friday, June 24 with an x-ray to see if the fluid is gone.  (I am hoping to get the pictures of the x-rays to post) Please pray there is no more fluid, or Dr. Vega will need to drain it.  ( I really don't want that to happen).  Tomorrow will be 5 weeks since my operation, and sometimes I feel like things are going much better, and Im healing great, and other days, I just want to sit on the couch all day and do nothing.  The site where the drive line comes out of my belly is still healing, so I would have to say it is the one thing that is causing me the most pain.  Unfortunately I am still having to take pain meds, but I'm only taking them once a day, sometimes twice.
My coumadin (blood thinner medication) levels are still low, which means my blood is too thick.  I have been avoiding green foods for 2 weeks, hoping to get my INR level to 1.8 - 2.2.  It certainly has been a challenge.  I have tried a very small glass of red wine because it is a blood thinner, and there were no changes.  (Darn) :)  We will continue to try different things and increase my dose if needed.  I will go in the morning to have more blood drawn to check the levels.  I will say... I normally have to go twice a week to give blood, and it's not fun, and I think I've been poked so many times I have scar tissue around my veins that used to work so easily.
Thanks again for all you followers, supporters, and prayer worriers. I feel like I can't say "Thank You" enough and describe how grateful we are, to have so many people that have donated, prayed, among the many other things by our generous friends and family.  We Love you people so much, and really are blown away at the support that has been given.  Much love to you all!!!!

Monica

"Brighton" my day!

I have a new angel bag that I carry all my wings and controller in.  Take a look and let me know what you think.  

June 3, 2011 Update

Yesterday I had my first follow-up appointment with the LVAD clinic.  It has been 3 weeks today since my surgery, and everyday I feel better and the pain is starting to subside.  Yesterday at the clinic, we answered lots of questions, and changed the drive line dressing.  The site looks really good and is beginning to heal.  I still have some fluid in my left lung they are concerned about and a very sharp, uncomfortable pain on the left side.  I was planning on dropping my pain meds, but they suggested waiting a little while longer.  Next week, I'm hoping to find out if my heart has decreased in size, because it's still enlarged to 7 cm.  (normal is about 5cm)  I'm just asking for continued prayers for my own heart to heal.  The doctors are hopeful that my heart will heal, and someday I will be able to have the LVAD removed.  It's a long shot, but with God, all things are possible!!!  

Everyday I'm getting stronger, and things are becoming more "normal".  Thank you.... to everyone for the overwhelming support and prayers.  I can not say it enough.  Thank you!!!