Sherry's Heart Valve Journal

2)The surgeon finally arrived in the ICU waiting room. "Mr. Jones, your wife is very,very sick; we are doing everything we can but she is very sick!" My husband asked what does that mean, she is very sick, we knew that already, that is why she is having the surgery. The surgeon replied, "We are having a hard time getting Sherry off the Bypass Machine, her blood pressure is very low, she is very sick! We have placed her on a Left Ventricular Assist Device to help her heart. We also had to do a graft to one of her heart vessels. She is still very sick.
It was later that evening that I arrived in the ICU.
My family was allowed in for just a few minutes at a time. My body was surrounded by machines that flashed and beeped. Multiple IV and blood products were being infused into my body. My chest had been left open to allow that Left Ventricular Assist Pump to help my faltering heart. Large tubes were coming from my left groin accessing my femoral artery. My face was bloated and hardly recognizable, my family yearned to just touch me, it was almost impossible to get close enough to touch me and let me know they were there for me.
The next two days were touch and go, my body continued to struggle to live. On the second night the Hospital Chaplain called my husband at 2:00 am and encouraged my husband and family to return to the hospital, it did not look like I would survive the night. My husband looked at his phone to make sure the phone call was real and that he had not just dreamed that he had received the phone call... it was real. They dressed and headed back to the hospital, fearing the worse.
The priest met my family as they returned to the Hospital ICU. Prayers were said, hugs were shared, more prayers ascended to the Throne of Heaven on my behalf. As the night progressed my blood pressure which had been very low slowly climbed and stabilized by nightfall. However, I was retaining and third spacing all the fluids that the nursing staff had pumped into my body to maintain a sustainable blood pressure. Over the next couple of days I put on 100 pounds of fluid, I was no longer recognizable to my family.
During the next couple of weeks it was one crises after another. My husband was approached almost daily for him to sign another waiver or permission slip to allow the physicians to perform another procedure or surgery. My kidneys shut down and dialysis was started. My liver was failing, jaundice set in. The Left Ventricular Assist Device(LVAD) was cutting the circulation off to my left leg. The fluid in my legs and abdomen were causing loss of circulation. The doctors and nurses closed the ICU to visitors and performed fasciotomy surgery to my left leg and abdomen. Each day brought about a new challenge, I was being kept in an induced coma to keep me still and help maintain my life.
Gangrene set into my left leg and they amputated it below the knee. A few days later my liver was functioning a little better, the dialysis was helping and my body was beginning to stabilize and then my heart went into atrial flutter and they needed to cardiovert my heart and place a pacemaker in.
Nearly two weeks post OHS, they began the process of removing the LVAD, they were successful and then began the process of allowing me to awaken from the coma, but would I? It was uncertain the condition of my mentation after having such a traumatic time with very low blood pressures. My family awaited with baited breath. Would anyone be home when I awoke. After two days of no sedation there had been no response to stimulation. My family decided to go home for the night. On the way to the parking garage, Jeff's phone rang, it was Levi, the night nurse, I was responding to commands! My family high tailed it back to the ICU and were elated when I would squeeze their hands and nod to their questions! Prayers of gratitude and relief flooded that ICU room that night.!
The next day, my liver enzymes again began to climb. It was felt that more of my left leg needed to be amputated. Back to the OR I went and had my left leg amputated above the knee.
Dialysis continued on a daily basis. Drawing the poisons and fluids out of my system. I began to awaken. As I was more awake a surgeon came by and told me, "Mrs. Jones, you have been very sick, in the attempt to save your life, we unfortunately had to amputate your left leg above the knee." I was still intubated(had the breathing tube in), and could not respond. I had no idea who this person was or what he was talking about, for I thought I was just awaking from my surgery on October 27th! I later found out that he was the partner to my Cardiac Surgeon, and he had been the person to perform the amputation.
I also found out that I had been in a coma for two weeks!
I was so weak! I couldn't even scratch an itch on my nose! I was very restless as I came out of the coma that my family decided to stay with me in the ICU round the clock, because I couldn't ring the bell, talk or move on my own. Finally I was extubated,(the breathing tube was removed), and began to make progress each day. The days were filled with dressing changes, I had four vacuum pump dressings, and with dialysis.
Physical therapy began to try and rehabilitate this poor body of mine. I was scared to death that I would fall the first day they had me sit on the edge of the bed! This consisted of two people in front holding and and one person behind supporting me, but I was upright!!
Three weekends after I had surgery, one of my wonderful nurses, Sally, slid me over to a special chair that laid flat and then would set me upright. Sally then proceeded to put all my pumps and vacuums on battery power and wrapped me up and took me out the front door to see the light of day! It was cold, raining, and very difficult, my family was thrilled as they gathered around and helped push IV poles and machines along the way to the great outdoors! Another moment to give praise and raise prayers to the throne above!
Thank giving came pureed that that year, but it truly was a Thanksgiving! A week or two later I was transferred out of the ICU to the surgical floor. They were so wonderful! Physical Therapy continued at the bedside. Long arduous dressing changes continued. It was really exciting one day I had the sensation to urinate! Could it be, YES!! I was able to urinate on the bedpan! Over the next week my kidneys began working and dialysis was discontinued! This was a huge answer to prayer. As PT continued I finally was able to stand at the bedside with two people helping me to balance!
Christmas came to me while in the hospital, the stockings were all hung on the IV pole with care! What a blessed Christmas, simple but I had most of my family with me and I was alive and alert to celebrate the greatest gift of all, the Son of God!
As my wounds continued to heal I needed another surgery to apply a skin graft to my man made hernia, that I was given when they performed the abdominal fasciotomy. They also needed to graft the groin where the LVAD had been. So back to the OR I went. All went smashingly well. I continued to heal from that surgery and shortly after Christmas I was transferred to the rehabilitation unit.
During my time on the surgical unit I had been on pain medication round the clock. The Rehab doctor wanted me to reduce the number of pain pills they were giving me. I did not have pain and so even though they were there if I needed them, I did not take them. The next three days I felt horrible, hot flashes, deep chills, nausea, aches and pains! You guessed it, I was going through withdrawal from the narcotics, not fun at all!
While on Rehab they gave me a day pass to go home for a day. I spent the day sleeping and withdrawing from the narcotics, but it was so sweet to lie in bed in the arms of my dear husband, it was such a sweet deep sleep!
Back in the hospital I continued to learn to use the kitchen again from a wheelchair and navigate life from a wheelchair as well as gain strength. I learned to hop with the walker and one leg.
On January 21st, my 90th hospital day, I was discharged home. Blessed day! Visiting Nurses and Physical Therapists continued to help me. I have continued to gain strength. I am now ambulating with a prosthetic and going to outpatient Physical Therapy.
My family continues to be so supportive. I am alive, as my daughter, who has been so helpful coined, "This is the new norm, Mom!"
Last August I had surgery to reverse the man-made hernia. I have just been cleared for full activity, I have joined a local gym and am gaining strength daily.

1 Wow! Time sure does fly! My life has been totally changed since I last left a journal entry. I had my surgery as planned on October 27th, 2011, however I never awoke until nearly Thanksgiving to know how my surgery went.
That was a very long day for my dear family. They had received a pager which they were told would buzz and let them know how I was doing around 2:00pm. Come 4:00 pm my husband decided to ask about how I was doing. He was told to go to the Intensive Care Waiting Room and the Surgeon would meet him there.

I have to admit that the most difficult part of this journey for me as a mother has been to share with my children my physical anomaly and to help them through the process of dealing with Mom's mortality! Even as I type this, I find my eyes welling with salty liquid. I realize the surgery has a very low mortality rate ,(2%), I have also been on the other side of the bedrail and know only too well the potential for complications that can arise. My biggest comfort and peace has come from my relationship with the Lord Jesus Christ. I really do not know how folks deal with situations such as this without his peace and comfort. When I explained my condition to Josiah, one of my "adopted" sons, his comment was, "Wow, you must wake up every morning and be so blessed to think, wow, God gave me another Day! Wow- that was a huge reminder for me, we all should be very thankful for another day! So I have made it a habit to look people in the eye and smile and tell them, Good morning, or hello...one does not know when they will have their last chance to do so, anuersysm or no anuerysm!

Two weeks from today my surgery will, God Willing, be behind me. We have been slowly packing, getting ready to move to our new apartment, so that I will not have to climb 31 steps to use the restroom. My children are readying themselves to trek to Mom and Dad's! This I am really excited about! I am planning a "Thanksgiving Feast" for the day before my surgery, it will be the first time that we will be together for Thanksgiving in a few years, and given the timing, they will not be able to make it for Thanksgiving, so our Thanksgiving will be in October, not November. We will be giving thanks for my diagnosis and ability to treat my condition. I am blessed with 2% of the population that have this congenital anomaly. Most people die from it, because it ruptures and they had no idea that they had it! It is a familial/genetic disorder, I encouraged all my family to be screened for this anomaly because it is treatable, manageable and premature death is preventable.

I am very thankful for all my friends and family who are praying for me and my family. I will keep you posted as to my progress. I count it all Joy, even though, it has been an up and down emotional time, I know my Saviour cares and is watching over me.

Who would of ever thought that I would be on the other side of the bedrail? I have been a cardiac nurse for over 30 years. I worked in the ICU for eight years caring for patients and their families that required open heart surgery. I have been involved in cardiac nursing most of my career.
The journey has been somewhat of an emotional roller coaster. I know too much to not be concerned. I found myself trying to phrase things as to not frighten my husband and family, yet inside I was very concerned. The big concern was that I still continue to have episodes of chest pain, when should I be concerned, You know the drill, "If you have ongoing chest pain that won't go away, seek immediate medical help." I responded to this once, $16,000 dollars later, I have no more assurance as to the cause of the chest pain. They worked me up both for cardiac and gastro-intestinal causes. My coronary arteries were clean, my stomach and intestines were working fine. The cardiologist was unsure as to what was causing the feeling that I continue to have, a pressure inside my chest, acting as if I had held my breath too long under water!.
I had my first visit with a cardiac surgeon, who told me to go live my life and not worry about the aneurysm, they would re-scan my chest in 6 months and go from there. I attempted to communicate my concern to him and he proceeded to tell me all about what he has done, never looking me in the eye, it felt as if he was talking through me not to me.
I considered a second opinion, especially after reading Adam Pick's book "The Patients Guide to Heart Valve Surgery". After much research and a couple of visits with another surgeon, I am on the count down to my surgery date. I am confident in my surgeon who's first visit started with "Tell me what you know about what is going on with your heart." Wow! did I talk and talk and ask lots of questions-he was amazing!
Things we are doing to prepare: We are moving from a three story townhouse with the bathrooms on the third floor to a ground level, one floor apartment. I have made arrangements to review my willl and make sure everything is in order. However, I am waking up every morning thanking God for another day. Each day is a gift, that is why it is called the "present'!
I have begun a different outlook on life and understand the fear that is experienced by folks walking this path., a path that I now tread, on the other side of the bedrail.