This is a long story; there's no way to make it short. Grams has reached a point where my frustration is overflowing this morning. My close friends already know this story, so if you're tired of hearing it, just skip today's post. I'm hoping that just writing it down will be cathartic.
Shortly after Christmas in 2006 Grandad came down with a bad cold that he just couldn't shake. By the end of January, it had become full blown bronchitis with a cough that just wouldn't quit. Especially at night, he would be wracked with coughing. He went to his general practitioner (doctor number 1) and was given antibiotics and cough syrup. He got better, but still had trouble with coughing at night.
At about this time I noticed that Grandad's occassional snoring had turned into a nighttime wheeze. At my insistence, Grandad visited my ENT (doctor number 2). Doctor number 2 did some x-rays, ran some tests, and started Grandad on an asthma medication with instructions for him to return for a follow up in a few weeks. While taking the asthma medication, the wheeze began to show up occasionally in the daytime, particularly after exertion. After more testing and a change in medications, doctor number 2 reported that Grandad's problems did not seem to be asthma nor allergies. He then sent Grandad off with a referral to a pulmonologist (doctor number 3).
Doctor number 3 got him in quickly, I think it may have even been the next day. He really took the time to talk with Grandad to try to understand what was going on. He listened to Grandad's chest and told him that wheezing at night is almost always indicative of a heart valve problem. He immediately referred Grandad to a cardiologist (doctor number 4).
The cardiologist scheduled him for an echo cardiogram within the next day or so. The technician began the procedure and almost immediately stopped and went to get the doctor. I was not with Grandad at this appointment, but he called me as soon as it was over and told me that he wasn't sure what had happened, but he knew it was not good.
The next day, doctor number 4 called and scheduled a heart cathertization for early the next week. This required day surgery and Grandad's first visit to the hospital. Enter doctor number 5, the cardiologist who actually performed the heart cath. The heart cath showed that Grandad had ruptured cords in his mitral valve and resulted in an overnight stay. The next morning they performed a procedure (I don't remember what it's called) where they ran a camera down Grandad's throat to look at his heart.
Results were conclusive that the cords of the mitral valve were indeed ruptured and the mitral valve would have to be either replaced or repaired. Doctors number 3, 4 and 5 conferred and concluded that repair was preferable to replacement. Since that is not done in Corpus Christi, later that day, he got a referral to doctor number 6, Dr. Gerald Lawrie, a world-famous heart surgeon at Methodist Hospital in Houston. Dr. Lawrie is the surgeon who later repaired Barbara Bush's heart valve.
We arrived in Houston a couple of days later prepared for heart surgery. We began at the surgeon's office with a quick (and I do mean quick) meeting with doctor number 6. He reported that he would repair the mitral valve using the DaVinci procedure which is a revolutionary new robotic procedure. It's less invasive than the traditional open-heart procedure and usually has a shorter recovery period.
When we left doctor number 6's office, we went directly across the street where Grandad did pre-admission check in. The next few days are kind of fuzzy for me, I think surgery was two days later. I do know that there was enough time for Grandad's mom and brothers to drive in from various points around the state. Our son was living in Houston, so I had a place to stay and, of course, our daughter came in from San Antonio.
The day of surgery started off with a phone call from Grandad reporting that they were taking him into the pre-op area about two hours earlier than anticipated and that we should come to the hospital "now." We threw on our clothes and dashed to the hospital in time for a quick visit before they took him into surgery.
We moved to the cardiac surgery waiting area where we passed the next 14 hours or so. Methodist Hospital is an amazing hospital. They do an excellent job of patient care and they are also very conscious of the care needed by the patient's family and friends. The cardiac waiting area is staffed all day long by volunteers who make sure each family gets regular updates on their loved one. And ... they have their very own Starbucks right in the hospital ... something that endeared them to Grams.
As the day went on we got occasional updates ranging from reports that everything was going well and they were actually ahead of schedule to no updates at all. We heard other family groups get reports that their loved one was finished and doing well. We watched as they hugged each other and left the waiting room. We sat silently as one family got the news we all dreaded. And we waited.
Sometime around 3 p.m. my nerves got the best of me and that feeling of impending doom set in. I tried hard to keep my spirits up, but by this time we were no longer getting any updates at all. I was convinced that something terrible was happening. Sometime around 5 o'clock the volunteers left for the day. And we waited. We tried playing cards to distract ourselves. It was not fun so we finally quit. And we waited. We were left with only one or two other families, none of whom had been there as long as we had. We saw new families come and go as their loved ones had emergency surgeries and still we waited. Friends and co-workers dropped by throughout the day. And we waited. Sometime around 7, someone came out and reported that he was out of surgery and the doctor would be out to see us soon. We spoke with the doctor standing in a corner of the Cardiac ICU.
He explained that the surgery had taken longer than expected because the instruments were not long enough. Because Grandad is 6'5" tall, he had to make adjustments and compensate for instruments that simply would not reach where they needed to go. The report was that he had replaced all the cords in the mitral valve with titanium cords and had placed a ring around the valve to assist with its function. He further instructed all the male blood relations who were present to see their doctors as soon as possible, because the weak cords in Grandad's mitral valve is a congenital problem and it's likely that other male family members have them. He reported that we would be able to see Grandad in about an hour.
(The actual amount of time that he was in surgery has been disputed by the doctor. I know that they took him to surgery sometime between 7 and 9 a.m.; it was sometime between 10 and 11 a.m. when the volunteer told me that they were ahead of schedule; and Dr. Lawrie did not come out until around 7 p.m. I believe he was under anesthetic for about 9 hours. Dr. Lawrie says it was only 4. Either way it was a long time.)
At this point, the rest of the family left the hospital and headed for their homes. All of them had to drive several hours. Grams, Katy and Nick began making phone calls to report Grandad's status to other family and friends. Hours passed and we heard no more from the recovery room.
Sometime around 10 p.m. enough was enough. The desk in the waiting room had been unmanned for hours and we had heard nothing since our talk with Dr. Lawrie around 7 p.m. Nick got up, walked across the waiting room, opened the ICU door, walked right up to the desk and said something like this. "My mom has been here since 6 a.m. The doctor told us at 7 that it would be about an hour before we could see him. I need to take my mom home. So, I need you to check on his status and let me know whether we can see him or not. Either of those is fine, but I need to know now. We've waited long enough."
The answer was that of course we could see him now. However, they did and said nothing to prepare us for what we would see. He was not awake yet and was not breathing on his own. My grown son took one look, shook his head to say "no" and headed back out the door. My daughter was a rock. She stood there holding me up while we both tried to be brave. It was one of the most difficult things I've ever done. We only stayed a few minutes.
When we returned to the waiting room to gather our things and leave, one of the other ladies who had been waiting came over and hugged me. She explained that her husband was undergoing his 5th heart surgery. She also expressed concern that the hospital staff had not prepared us to see a post-surgical heart patient. She took a few minutes and explained to us that what we had seen was totally normal and nothing to be upset about. I didn't get her name, but to this day I sincerely appreciate her kindness and comfort.
We went home and tried to sleep. The next day we began scheduled visitations in the CICU. Two of us were allowed in for 10 minutes once every four hours. He remained there for 3-4 days. He had been under anesthesia for so long that he had a lot of trouble waking up. When he was awake, he was not lucid. He did not know where he was or what day it was. Sometimes he didn't know us.
It seems that when you are a world-famous heart surgeon, that's all you do. We did not see Dr. Lawrie on a regular basis after surgery. His patients were assigned to nurse practitioners and staff cardiologists for follow up care while hospitalized. Enter doctor number 7. I don't even remember his name, but he reminded me of Jafar, the grand vizier from Disney's Aladdin. You couldn't hear him coming and he was difficult to understand. But he was the doctor who came by the hospital daily to see Grandad.
Once Grandad woke up and was moved to a semi-private room, his recovery was quick. Within a few days we were on our way home and his care was turned back over to his local doctors (doctors numbers 3 and 4).
Where do I go from here. Initially, Grandad's recovery seemed uneventful. To my delight his nighttime wheezing was gone. He seemed to be on the mend and we thought he would soon be as good as new. However, he soon began to have chronic pain in the right side of his chest and sometimes he was short of breath. His blood pressure fluctuated and sometimes he had bouts of dizziness and/or excessive sweating. He also had no stamina and could not do anything strenuous. This continued through the summer and he was referred to a pain management specialist (doctor number 8). He has taken a wide variety of pain medications off an on since surgery. None of them gave him relief.
Our frustration has been that often when he got to the doctor's office, nothing would show up. They never saw what was happening. Usually, by the time he got to the doctor's office everything seemed fine. No one ever actually said it to us, but I think they thought he was a hypochondriac or drug seeking. At one point they sent us back to Dr. Lawrie in Houston who met with us, listened to us and then told us that recovery was just going to take more time. We were pissed off to say the least. We had driven several hours to see him and he just blew us off. No tests, no examination, nothing he couldn't have done over the phone.
In October of 2007, approximately 9 months after his initial heart surgery, Grandad woke up one morning and could not breathe without excruciating pain. We met the doctor at his office on a Saturday morning. In addition to pneumonia, he was diagnosed with a "crust or scab" covering the outside of his left lung. He was admitted to Christus Spohn Shoreline Hospital and we met doctor number 9, a cardio-thoracic surgeon.
Coincidental to this hospital admission, my mother was in another local hospital dying of kidney failure. By the time they recommended surgery, she had slipped into a coma and it was clear she would not survive more than a day or so. When the surgeon recommended that Grandad have surgery to clean out his chest, I asked if it could be postponed a week so I could go bury my mother. The answer was an emphatic no. Surgery was indicated as soon as possible. My mother died within hours and he actually had surgery on the same day she was buried some 500 miles away.
The surgical procedure was called a thoracotomy. This is one of the most painful operations a person can have. As with the initial heart surgery, it took several hours longer than anticipated. The incision runs across his back and down to his right side. Recovery was long and extremely painful, but we were hopeful that they had found the source of his pain and that we would soon be feeling better. Unfortunately, this was not the case.
A year later, the frequent trips to the doctors continued because Grandad still did not feel well. Nick and Marie were soon to be married and they were all home for a bridal shower. When Grandad woke that morning he could not breathe without a lot of pain. He finally called his internist/pulmonologist who instructed him to come to the hospital. We woke Nick and had him take Grandad to the hospital while we went on with the shower. This time was different. When he walked from the ER entrance to the triage room, his blood pressure plummeted and he became very short of breath. Needless to say, they admitted him.
As Hurricane Ike bore down on the Texas coast, Grandad underwent a battery of tests, x-rays, scans, etc. in Christus Spohn Shoreline Hospital. He received two rounds of IV antibiotics because he had a persistent fever. During this hospitalization we met doctors number 9 and 10 who were brought in for consultations. The hospital was evacuated with the exception of Grandad and three or four other patients on the telemetry floor. It was eerie to be in an almost empty hospital. He was sent home on Thursday after five days in the hospital with no diagnosis. They never identified the cause of the fever, but he felt better by the time he went home.
Once again, it didn't last. After only a few weeks all the same symptoms returned. Generally, he just feels like crap and can barely perform the most mundane physical activity. In the past three years he has taken a wide variety of drugs for high blood pressure, blood thinners, and pain. He has also seen doctors number 11, 12 and 13 ... two of them are neurologists, one in Houston and one in Corpus Christi ... the other is an endocrinologist in CC. They have determined that he has an enlargement on one side of his thyroid and a pocket of fluid on the other side. They are continuing to monitor the thyroid and a follow-up visit is scheduled for later this month.
Last week, the pain in his chest again became unbearable. This time the diagnosis was pleurisy, an inflammation of the lining of the lung. He was given two steroid injections and told to take Tylenol.
Yesterday he called his cardiologist to follow up regarding a change in medication suggested by his internist/pulmonologist. This morning, when her nurse called him back to follow up, she suggested that perhaps he should go to the Mayo Clinic. He immediately said no, that it would be too far and too expensive to go there.
Grams is convinced that this is exactly what he needs to do. There is no doubt in my mind that it would be the right thing to do. In fact, I've been hoping for exactly this referral. Hence my extreme frustration today. While I understand his concerns about the cost, what really matters to me is him getting well.