Going Home

Going Home ~ Fighting Daily with Heart Failure pt.6

I had so many visitors, cards, gifts and prayers while in the hospital. The out pouring of love brought me to tears. My homeschool group was preparing dinners a few times a week. My children handled this in there own way. C still hugged me, T sat beside me, J, 5, was scared but slowly warmed up to me. R was assured and Cr was loving. We were given money from friends and family and it was just enough to cover the expenses that was not covered by insurance. God is that good! The nurses and CNAs were friends by the end of my stay. Such a wonderful group of caring people.

I was told that I would probably be in the hospital 21 days after surgery. I got to leave in 19. Worked hard for the prize. I was going to go home with a PIC line for antibiotics. A home health nurse would help with that. My daughter was shown how to flush the line and lock it with heparin. I was taught how to do a daily sterile dressing change, which my husband and daughter were going to do. We were educated and were ready to go.

I had been in the same room, besides the occasional PT walk around, for almost 3 weeks. Jon got permission from the Dr.s to take me on a date. He had passed all the tests, got a wheelchair, put me on batteries, grabbed my spare system controller and started dragging the IV pole behind me. I was free! We went to the cafeteria and got some food and sat at the table. I still had no appetite since surgery but we were together. I didn’t stay long, it was a bit of sensory overload, but we did it. I knew we were going to be fine.

November 18, 2012 was the big day! Right before Thanksgiving. I couldn’t have been more grateful than to be going home. Sleeping in my bed and hugging on my children.

Actually, Im real scared. There are no nurses or professionals living in my house. I really wanted to go home but at the same time, I was just fine where I was. I think the Dr. was ready for me to get out of there. He was afraid I would catch a hospital bug if I stayed there any longer. So, I went home.

LVAD

LVAD ~ Fighting Daily with Heart Failure pt. 5

Drs. had mentioned an LVAD to do the work of my heart but at UVA they are prepping for it. One of the last tests I remember taking before I mentally checking out, was an echo. An echo is an ultrasound of the heart. They can measure the size of the arteries, the blood flow and how many beats. You can also turn up the volume and hear the Lub-Dub. That is the last thing I remember of that day and the days following. I was going down hill fast. My husband said my children came to visit and his family, my mom and dad. Was this going to be the last time they were going to see me? Was this the final goodbye?

My husband watched as the nurses prepped me for surgery, Open Heart Surgery. Was the Lord going to swoop in at the 11th hour and say this surgery was unnecessary? Were the Dr.s going to see a miracle at the last moment? Were they going to start the surgery and just have to close me up again because my miracle working God came to my rescue?

God was there with me but it was in the form of guiding the surgeons hands. He was there in the form of no infections. He was there in the form of the mechanical equipment working as it should. He is with me always and I was alive.

The breathing tube was removed and I began following the nurses directions. I was learning to sit in a chair while dragging all the tubes and wires with me. My pain was manageable. Physical therapy came daily to start my legs marching. I had chest xrays daily to make sure everything was where it needed to be. It was a long road but I was moving forward. I was up to the challenge.

After almost a week I was moved from ICU to the Floor. I began the education side of the LVAD.  What do you do if this or that alarm goes off? How do you connect the wires, correctly? How to put your controller and batteries in the shower bag to take your shower, when you cant get anything wet? Lots of questions. My husband was a A+++ student. He read the manuals and took the tests. He was ready to take care of his battery operated wife.

Changing Venues

Changing Venues ~ Fighting Daily with Heart Failure pt. 4

Dr.s have been drawing blood, checking monitors, checking pressures, making med changes, they have exhausted their resources. My heart function is at 8%, my heart rate is extremely high and they are not seeing any improvement. My heart is working double time but that can’t last. Soon, other organs will start to shut down. The cardiologist had to have a hard talk. He said,”There is nothing else that we can do here. I think you’ll need to go to another hospital and get an LVAD.” What’s that? A Left Ventricular Assist Device. It does the work for the heart. The hope is that my heart will rest and remodel. At that time, my heart muscle, has been working out so hard, like a bodybuilder, that it has grown into a huge muscle. After working so hard, it has grown tired and the built up heart muscle has turned flabby.

This whole week, my children, parents and in-laws visited and prayed. At the end of the week, the cardiologist said, “We are going to have to move you to another hospital, a hospital that has other resources.” Jon, my husband, asked, “If it were your wife, where would you take her?” He said, “I would take her to UVA.”

I was prepped to take the 2 hour ambulance ride. There were 4 EMT workers, life saving equipment, beeping monitors and me in a stretcher. I was feeling fine, watching Father of the Bride in the back of the ambulance. The workers were on edge asking how I was feeling. I don’t think I knew how serious this was.

Angels Among Us

Angels Among Us ~ Fighting Daily with Heart Failure pt. 3

My nurse’s name was Amy and the Dr.s NP was Linda. Through all of this, God placed some wonderful, God fearing people to take care of me. I’d never had a heart catheterization and I was kind of nervous but they put me at ease.

The team that was going to help do the procedure came to get me on Mon. morning. They explained the procedure, how the Dr. would numb a place in my groin, over the main artery, and guide a special catheter into the heart, checking pressure along the way. I woke up with a Swan sticking out my neck, not the bird, a catheter that can measure pressures in the heart. Everything went as expected.

Because my heart was enlarged, the catheter was floating around and didn’t stay in the “wedge” where the Dr.s wanted the readings from. I had to go back Cath Lab. A different team of people came to get me. They introduced themselves as Jim and Lisa. Everyone, Dr.s, nurses, blood lab workers,etc., were very good at introducing themselves so I’d know who they were. When I was in the lab, I was introduced to Dr.Jones, another nurse, Brenda and a tech, Tom, that was reading the ultrasound. The Dr. was going to have to re-thread the swan to get the end in the wedge. He wasn’t as gentle as the previous Dr. He was ripping the tape off my neck, pulling little hairs as he went. Lisa put a blue covering over my face to make the area sterile,turning my head, leaving a tiny little space to breath through. Then, the Dr. says, “Oops, I put the wrong size catheter in. I’ll have to do it again” Tears are starting to form and roll down my cheek. I can only see the feet of someone I thought was a tech. He asked me if I was OK and squatted down to see my eyes and holding my hand. He wasn’t in the room when we started. I just kept staring into his sunglass covered eyes. I felt comforted and that everything was going to be OK. When the Dr. said he was finished with the catheter, the tech stood up and the nurse came around and took off the blue covering. When I looked around to say goodbye and thanks to the tech that made me feel better, he was gone. I asked where he was and no one knew who I was talking about. I immediately thought he was an angel.

Psalms 91:11 – For he shall give his angels charge over thee, to keep thee in all thy ways.

Admitted

Admitted ~ Fighting Daily with Heart Failure pt. 2

I wasn’t sure what to think. I’m numb by the news. My husband, Jon, didn’t know what to think either but was very reassuring that everything was going to be fine. The cardiologist on call came in and began the bombarding of questions. Has anyone in your family had heart failure? Have you been treated for heart disease? Has anyone in your family had heart disease? The answer to all of the questions were “No.” He left the room to go and consult with his team.

The nurse came in and said, “You have family waiting outside.” I said. “I do?” We had only been in the room for 15 minutes. I knew my husband had contacted his family to let them know what was going on and to start praying but I was pleasantly surprised to see his brother and his wife waiting outside of our door. This was the beginning of the support we were going to need. We filled them in on what the Dr. said and we began to pray. The fearless confidence had begun.

The cardiologist came back into the room  and said they are going to admit me into the hospital. They are going to do some tests and start me on some IV meds that should help in restoring my heart function. Because I was healthy and not on any mediation, they had to start with very small doses of the medication cocktail. I spent the first night asking to raise all the windows and turn the air up. I was so hot. Nurses ruled out high blood pressure and were sure it was just a reaction to something new.

Next, the team needed to do a right heart cath to check the heart pressures and blockages. That was my first angelic visit.

Fighting Daily with Heart Failure

Fighting Daily with Heart Failure

This is what heart failure looks like.

Not what you thought, huh. My name is Beverly. Two and a half years ago, just three months before this picture was taken, I was diagnosed with Viral CardioMyopathy. No family history, no previous symptoms.

It all started at a Labor Day camping trip. The tent was up and the fire was blazing. The family was having fun around the campfire; stories, s’mores, memories. When it was time for bed, teeth were brushed, the fire extinguished and we all laid down. I started feeling and hearing this indescribable wheezy, cracking sound as I breathed in and out. I had never heard anything like it so I just assumed it was the beginning of a cold and I needed to get it checked out when I got home.

When I got home, I made an appointment with my Primary Care Physician. She went through all the normal tests and said I probably caught a bug and she put me on a weeks worth of Amoxicillian. The second week, I wasnt feeling any better. I was having a harder time breathing so they ordered a puffer to use a couple times a day. I’d never suffered from asthma or used a puffer before but just thought the cold must be going into my chest.

On Saturday, we drove to the beach because my husband thought the good, salt air would clear up my breathing. We parked and I started walking to the beach. Every few steps, I had to stop and catch my breath but I made it to my chair on the shore and took deep, long breaths to clear this stuff up.

Through out these weeks, Im getting weaker, not eating well and having trouble walking very far. Im having “occular occurances” which mean for about 30 seconds at a time, my eyes stop working together. I can see fine if I close each eye but both opened, I see cross eyed, then it just clears up. It didn’t happen often but it was really freaky. I am also starting to throw up. I call my Dr. and they are still pretty sure its just taking me a little longer to get over this bug and start me on a Zpac antibiotic.

Another night of vomiting and weakness and my husband has had enough. It didn’t seem like anything the Dr.s were doing was working so he took me to the ER. I got some bloodwork and a chest x-ray done and then we waited. We weren’t real anxious, we just thought the congestion moved into my chest and I may have pnuemonia. The Dr. comes into my room looking troubled and a little frazzled and said “Your heart is huge.” I said, “I don’t like what I’m hearing.” He said, “Well, I don’t like what I’m looking at. I need to call the cardiologist to come and see you.” We started praying!