Saturday, May 1, 2010

Two Years

Two years ago, our lives changed. We would find it had been creeping up on us for a long time, but the shock of what happened leaves me grateful every moment that my husband made it through alive.

For several months, Rob had been having strange symptoms, none that seemed related to each other. It started with him gaining weight and despite eating like a bird, the weight kept piling on. He was well over 350 pounds. He had a strange tickling cough that wouldn't go away. His shins began to swell and he developed weeping blisters. He couldn't sleep in bed anymore. He started sleeping upright on the couch because when he laid down he couldn't breathe. He went to his doctor about his legs because we thought it could be an infection. The doctor swabbed for MRSA, then told him "his girth was restricting blood flow to his legs. Lose weight". Then his legs were wrapped with an ace bandage to constrict the swelling and he was sent home.

Life began to get really hard for him. He couldn't walk up a flight of stairs without getting winded. He came home from work every day, sat on the couch and fell asleep. He was exhausted. Tommy was in the hospital around this time having a scheduled surgery to widen his airway. My mother in law was in town to help out with the boys. I remember the three of us arguing because Rob didn't want to visit Tommy. Turns out it was it was because Tommy's room was at the end of a long hall and Rob was having great difficulty walking that far. He eventually went that night and I have some great pictures of him leaning over Tommy's crib.

Tommy was only in the hospital for a few days and came home on Monday morning. That evening, Rob felt ill. He was having a hard time breathing, coughing and felt chest pain. We both felt like maybe he had bronchitis some other lung infection. We discussed him going to our doctor the following morning, but he said he felt sick enough that maybe he should go to the ER. He said he felt well enough to drive himself, but I needed to come with him. He wanted me to do the paperwork and insurance, and I know he wanted me to keep him company.

Once we made it to the hospital, he could only walk a few feet without having to stop to catch his breath. I tried to go get him a wheelchair, but he insisted to just give him a second and he would be okay. He stopped several times to catch his breath. It took us about 15 minutes to get into the door. Once I got him settled into a chair, I went to sign him in. I told the nurse he had shortness of breath and chest pains. They took him straight back. A pulse ox showed his oxygen was low. He was put on the monitors in a room and the doctor ordered an EKG.

Everything started happening very quickly after that. An EKG takes just a few seconds to do and the results are printed right out. The tech turns to the nurse and whispers something that only I heard. "He's in Afib". I knew from having a heart kid that Afib was NOT a good thing. I knew it was an irregular heartbeat, I just didn't know HOW bad. As it turns out, it was very, very bad. The top of Rob's heart was quivering instead of beating. His heart rate was well over 200. Rob's heart was not working properly. The doctor said Rob was not having a heart attack, but that his heart was failing. They had to get the quivering under control right away. They admitted him right away. The heart center was a block away from the ER. They took him by ambulance.

He was given several medications to slow his heart rate and to start pulling fluids from his body. He lost approximately 20 pounds in 5 days just from his body letting go of the fluid. The official diagnosis was congestive heart failure with atrial fibrillation. Now they had to find the cause, and get his symptoms under control. A-fib is very dangerous because the heart is not pumping efficiently and can cause blood clots. He had ultrasounds of pretty much his entire body to look for clots. The first time he fell asleep in the heart center set off alarms. His oxygen was dipping into the 80's when he slept. Putting him on oxygen didn't help. He wasn't breathing when he slept. They brought in a CPAP machine and fitted him with a sleeping mask. It was very tricky and finally we had to start letting him fall asleep wearing the mask and turn on the machine once he was asleep. He didn't get much rest. His medications had him running for the bathroom every hour to let go of more fluids.

After 3 or 4 days of medications to correct his A-fib, the doctors decided to do a trans esophageal echocardiogram, a TEE. Rob would need to swallow a probe so that the doctors could examine his heart from his esophagus. Basically it is an ultrasound done as close to the heart as possible, without all of the tissue, bone and muscle to pass through to get a picture. Rob had to be knocked out so they could get the probe down his throat. Typically the throat is numbed and the patient just swallows the probe while awake, but Rob wasn't able to without gagging.

He came back to his room with large red marks on his chest and back. Medication wasn't able to fix the irregular heartbeat so Rob had to be cardioverted. His heart was stopped and then restarted by shock to put his heart back in normal sinus rhythm. We were told it was a wait and see thing. The longer his heart stayed in normal sinus rhythm, the better chance he had of it staying in normal rhythm and not slipping out again. Praise God, it's been 2 years without another episode of A-fib!

CHF caused us to make some serious changes in our lives. One of those things was diet. Low sodium is necessary to keep fluid from building back up again. CHF is forever. His heart is damaged and there is no going back. It will never pump efficiently on its own again. Medications are necessary to keep his heart working properly. He takes 5 different medications a day to keep him going. The other big change was being told that Rob should no longer work. He needs have the least amount of stress possible in his life and on his heart. No standing for long periods, no sitting for long periods. No extreme temperatures. No stress. No salt. Relax. Walking is good, but take it easy. Basically the only thing he needs to do in life is chill out and take it easy.

Funny how taking it easy makes our lives very, very hard. It leaves it to me to work full time while he watches our kids. That is more stressful than working in my opinion, but there is not a job available he can do that would not tax his heart or his stress levels. We make due with the life we have.

We've learned to slow down and take nothing for granted. Nothing is too hard. Nothing is THAT important. Between losing Tommy and nearly losing Rob, there's nothing we can't face. Our biggest obstacle has been that we are without insurance. Thankfully, his medications are generics and only cost us around $20 a month combined. We also recently found out he can get his blood levels checked for $15. He takes Coumadin, which is a very dangerous anticoagulant. Too much in his system and bumping himself can cause internal bleeding (another reason he shouldn't work). Not enough, he is at high risk for blood clots. He grew a beard because he's afraid to shave. Cuts bleed longer and he doesn't want to risk it.

We've applied for disability, but we've been told he doesn't qualify. We've appealed twice and retained a lawyer. Next step is to take it before a judge, but the docket is full until next spring, so we wait another year without medical care for him. We own a pulse oximeter and check him regularly. He also weighs himself daily and checks for signs of fluid buildup. Our biggest saving grace was his CPAP.

Rob's CHF was caused by severe obstructive sleep apnea. Snoring and not breathing while he slept caused his body to startle itself awake so many times at night that his heart overworked itself. Two things scared us about this whole experience. First was being told in the ER that if we had waited to see his doctor, he wouldn't have made it and probably would have died within 2 days. The other was without using a CPAP machine, he would probably have a heart attack in his sleep and die. That machine literally saves his life.

I don't know what I would do without Rob, but because of the nature of his disease, we face it every day. If he gets winded, feels lightheaded or becomes ill, we panic. A simple lung infection could kill him because his body is not 100%. All of this from snoring.

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Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries