Heart Mate II LVAD

Because I have gotten quite a few questions about my heart pump (LVAD), I thought I would post a few words on what it is, how it works, and how it affects my day to day life.

The Left Ventricle Assist Device (LVAD) is a pump that was implanted August 18 to help my heart function. The pump looks like the bottom of a kitchen sink and is made mostly of titanium. It weighs around 7 pounds. It is connected to both my aorta and left ventricle. Basically, my heart still beats, but instead of the heart pumping the blood to the body, it pumps the blood into the LVAD and the LVAD pushes it to the rest of the body. It is a continuous pump, so I have no pulse. :-) Here is a picture of the LVAD:


The pump is connected via a cord to an external controller. The controller has to be plugged into a power unit at all times. I have several batteries that I carry around during the day and a huge power unit in my bedroom that I plug into at night. We have to change the dressing on the site in my stomach where the cord comes out every other day.

A lot of people have asked if I can feel the pump in my stomach. Every once in a while if I lay a certain way, I can feel a heaviness in my chest. Also, I hear the pump continuously in my ears (it sort of sounds like a vacuum cleaner). It isn't annoying or loud, just there.

It's amazing how far advanced the medical field has come. I am so thankful to the people who have given so much of their lives for this surgery. And I thank God continuously that He is watching over us and has provided a way for me to spend more time with those I love. Every day I wake up and tell myself, "This is the day the Lord has made, I will rejoice and be glad in it." It's a new mind set when you know how precious each day is.

The pump will only be necessary until I get a heart transplant. In February they will test my heart and lung pressures again, and if they have improved, I will be bumped up on the transplant list. When I get a new heart, my LVAD and defibrillator will be removed. Praise God! I never thought I would be praying for a heart transplant, but we never know what trials we must go through.

I was talking to my sister yesterday about how there are two ways to look at every situation: with anger or sadness for the things that are tough or with thankfulness and joy for the blessings and mercy from things that could be worse. Ray and I have chosen to try our best to be thankful for the many blessings we have been given and for the way God has watched over and protected us during this difficult time. It is easy for us to get sad and discouraged, but it seems when that happens that God sends some words of encouragement to help remind us of His love for us.

Wonderful CoWorkers

This morning I headed downtown to clear out my office. For those of you who didn't know, I had taken a new job in March as an IT Audit Chief for the newly formed State Internal Audit Group. I had only been at the job for 3 weeks when we found out about the heart failure. In those short 3 weeks, I made some wonderful friends... and got to work with some old ones (that's not an age innuendo Joe, Jim, Greg, Ed, Chuck, and Rich).

Throughout the last seven months, my co-workers and bosses have sent flowers, cards, and some even visited me in the hospital (including my wonderful boss). I can't express how much that touched my heart...

As you can imagine, it was a great place to work. Clearing out my office (and thank you to Susan who kept my bonsai tree looking amazing) was a hard realization that it will be a long time before I am able to return to work. The doctors have told me that I am not allowed to work with the VAD (or drive for that matter:-). They have told me that they will clear me to go back to work one year after a heart transplant.

Being so young, I am really praying that God has big plans for my life. I feel like I have so much to give. I feel that because I have been so blessed with such amazing people in my life, that I want to give that blessing to others. Hopefully I will get that chance. :-) Until then, I will miss my office on the 35th floor overlooking downtown. But most of all, I will miss the people I won't get the opportunity to work with for a while. :-)

Seven Years and Hopefully Many More

Today is Ray and I's seven year anniversary. As we were watching our wedding video this morning, I was thinking of how very blessed we have been. First of all, I remember on our wedding day thinking that I could never love any one more than I did Ray... but through the last seven years and especially through the last seven months, my love for him has grown more deep than I ever imagined was possible. He has shown me the true meaning of self-sacrifice. He has walked through this valley side by side with me. Often times we forget that those we love suffer just as badly as those going through the illness. So please, remember him in your thoughts and prayers and reach out to him, as he is giving all that he can and then some to try to get us through this. It is only by God's grace and mercy that we are able to make it through each day.

Secondly, we have so many people in our lives that have been such an encouragement and inspiration. My sisters, brother, in-laws, and parents and friends have been such a large part of my life and I am so thankful for the way they have influenced my life.

Some times it is hard to portray on a blog how things are really going. We have had several really wonderful days lately... but even a good day is a tough day for us lately. We are trying each day to grow into the people that God would have us be, but we are also crying out to Him constantly. He has been so faithful to bring us so far, but we know we have a long way to go.

There has been a song lately that has played over and over in my mind and comforts us at during our weakest times:

HIDE ME NOW; UNDER YOUR WING; COMFORT ME WITHIN YOUR MIGHTY HAND;

WHEN THE OCEANS RISE AND THUNDERS ROAR; I WILL SOAR WITH YOU ABOVE THE STORM; FATHER YOU ARE KING OVER THE FLOOD; I WILL BE STILL AND KNOW YOU ARE GOD.

FIND REST MY SOUL; IN CHRIST ALONE; KNOW HIS POWER IN QUIETNESS AND REST;

WHEN THE OCEANS RISE AND THUNDERS ROAR; I WILL SOAR WITH YOU ABOVE THE STORM; FATHER YOU ARE KING OVER THE FLOOD; I WILL BE STILL AND KNOW YOU ARE GOD.

Pumpkin Patch

Yesterday God gave me the opportunity to join my sister, nieces, mom, and dad at the pumpkin patch. It was so uplifting to see my four beautiful nieces having such a good time. I also got the opportunity to meet the family of a doctor who has been a huge blessing and encouragement to me through my time in the hospital... not to mention the other friends we got to see there.

Children are so sweet. At one point, one of our friend's daughter started asking me several questions about why I didn't need a wheelchair anymore and why was I carrying a bag. Explaining to her that they put a pump in my heart and that I am awaiting a new heart made me really thankful for the blessings God has provided to me. I have come a long way from the many nights of vomiting and being bed-ridden. She also made such a sweet observation, "I feel glad for you that you will get a new heart but really sad that someone has to die to give it to you." Even at such a young age, she understood way beyond her years. I have been praying for the family of the donor who will provide my new heart (although, I am still praying for a miracle and that my heart will get better on its own). Again, I really appreciate all your prayers and ask that you would please continue to pray. My heart transplant doctor said that in February, they will test my pulmonary pressures to see if they have improved. If they are where they want them to be, they will bump me up on the transplant list. (Last weekend there was a guy who was not critical, and he got a heart in less than 2 hours!) Although we are going through a dark time, it is so uplifting to have prayers being raised. Thank you.

Answer to Prayers After Another Week in the Hospital

Can you believe it? We went to the hospital on Tuesday because the site where I got my defibrillator put in had not healed completely on the left side and was bleeding when I slept on it at night. When we went to the hospital, the doctor said the device had to be immediately removed by surgery and then they would have to put it back in the other side with another surgery. The doc was very concerned that if the site was/got infected, there were wires attached that went straight to my heart, and the infection would most likely be fatal.

On Wednesday, after a long night in the hospital, they started me on IV antibiotics and didn't let me eat all day. The doc finally came around 3 and said my site didn't look infected and I had no symptoms of having an infection... so he thought they shouldn't rip it out.

Then later in the night, they came back and said they were too worried about infection and they needed to rip it out.

Another long night and no eating all day Thursday. Wednesday night held a LOT of prayer for me. Not only from some prayer warriors around me (Ray, Mom, Dad, Mary, Harrison, Mary, Nikki, etc.), but some intimate longing in my own soul to know the love and strength of God. The verse, "CAST ALL YOUR ANXIETY ON HIM, FOR HE CARES FOR YOU" went over and over in my mind.

Thursday (late afternoon again) a different doctor came and said that there were more risks of infection in having 2 surgeries than in a "possible" infection of which I had no signs. I was so thankful for this doctor, and that God had heard my prayers. I really felt God reminding me of His love for me and that even though we are going through such a dark time, He is with us... and I am so thankful for His love.

By Saturday (yes, that's 5 more days in the hospital), they slapped some stitches on my site and sent me home. The only other concern they had was that my kidneys were not doing well because I hadn't eaten for several days and they had given me really strong antibiotics.

I also got psychologically evaluated in the hospital for my heart transplant. Surprisingly, I am not crazy or in need of drugs. :-) She said something though that has changed my thinking quite a bit. She said that I will have many rough days where I just have to lay around and rest. But on the days when I am feeling well, she suggested I got out and do something big. Because even though I will be tempted to do what is comfortable, I will never remember a day of laying around; however the memories of doing something big will always be with me. I thought that was good advice for all of us. None of us know the day or hour when we will leave this life or our Lord will return, so we must make the most of every available memory. And also in our faith, it is easy to do what we are comfortable with, but extremely hard to take big steps and let God use us in different ways; however, we will always have the memory of being able to be used by God.

Sorry for the long post... and for the tardiness in getting this out. There are so many of you that have been so wonderful with visits, cards, phone calls, e-mails, etc. I thank you so much. And I want to extend an even bigger thank you to anyone who has prayed for Ray and I. There have been times in this journey where we have been so tired and in so much pain that we couldn't pray ourselves. It was in those times that we coveted the prayers from our loved ones. I am so thankful to have so many prayer warriors surrounding us in our time of need. I cannot thank you enough. Love to you!