The next thing I know, I'm trying to schedule a cataract surgery with an obstinate scheduler, when I got so frustrated that I told her where to stick her 10 years of experience and hung up. shortly after that, the pain in my stomach came back, alerting me to the fact that it was just nerves. I think it was a Thursday night around 3 AM when I finally got enough symptoms to make me think that appendicitis was my problem. I had fever, chills and pain over my appendix. Sold me on it! I drove myself to the hospital and checked into the ER. I told the lady I thought my appendix was the issue and she called a few people and brought me back to an examining area. I laid there for several hours when someone took me for a cat scan. A couple of more hours later they came and told me that there was nothing wrong with me, but my creatinine level was over 3 and it should be at about 1. I should see a kidney specialist. Knowing that I've got kidney issues, I went home and the next day tried calling my kidney specialist but never got a call back. I knew that the creatinine issue was serious.
I called my son Brad and asked his advice, kind of a role reversal, but Brad is usually pretty sensible and I respect his opinions. He said he'd be over to drive me to the hospital. So, there I am back at the ER talking to the same lady who does not remember me from the night before. She once again asks me why I'm there and I tell her pain in my stomach and an elevated creatinine level. she tells me I'm only allowed one complaint, which do I want it to be? I choose stomach pain because I doubt she'll be able to spell creatinine and they begin to check me in again. While waiting in the assigned seat, my phone rings and it's my kidney specialist calling and telling me that I absolutely belong in the hospital with a creatinine level of now 3.2, as I could require dialysis at any moment, if it rises any more? He couldn't believe they discharged me at a level of 3!
I'm admitted and assigned a room. I begin to deal with hospital mentality immediately with a nursing staff that think that they rule the world, but I'll get to that. I get along with most of them, but occasionally there is a personality that clashes with mine because of my smart mouth. Now I'm subjected to a battery of tests and different Nephrologists (kidney doctors). Each tells me the opposite of the last one and all the while I've got Dr. Harvey (my doctor) intervening. I listen to Dr. Harvey in spite of the fact that he's not on staff in the Scottsdale Hospital. I'm there for 8 days when they tell me that I've got a narrowed artery leading to my intestines and I need a stent put in it to relieve the stomach pain, but I can get that done as an outpatient. Huh? I'm in the hospital but they want to release me to have an outpatient procedure, when I'm just sitting right there! Now more confused than ever, my granddaughter picks me up, only for me to discover that I can't breathe to walk and talk at the same time! I'm literally gasping for air just walking to the elevator, about 20 yards away. Kylie, my granddaughter sits me in the lobby while she gets the car, while I feel like I just ran a marathon, really! Kylie lectures me on the ride home, about a mile, about my poor eating habits and offers to go food shopping for me. I just want my recliner and some peace and quiet while I figure out what's wrong!
I've just been discharged from a reputable hospital and I'm in worse shape than I've been in all week. Because I've been in a bed all week, I had no idea that I now have a new problem that is heart related, because I cannot breathe! Let me bring you up to date a bit. I've known for the past 5 years that a aortic valve replacement was in my future and I shared this with the medical staff at Scottsdale Memorial Hospital. They never once suggested my seeing a cardiologist. I don't have the medical background to determine that my stomach issues are likely a symptom of a bad aortic valve, one that reduces the amount of blood flow to necessary arteries while digesting food. This was however mentioned to me by my kidney doctor, Dr. Harvey. By the way, my creatinine level has dropped down to where it needs to be prior to discharge. I finally go to sleep about 10 PM, hoping to get my first good night's sleep in 8 days, but no. It was constantly interrupted with episodes where I would awaken gasping for air. At about 7:30 AM I called my cardiologist on his cell phone that luckily I had and beg him to admit me to Good Samaritan Hospital where he is on staff. He not only agrees but insists that I go immediately. I call Brad, my son and ask him to take me there and he comes right over. I shower and shave and put on fresh clothes knowing it may be a while before I have that opportunity again. We check in where they already have a bed ready for me, room 104.
My roommate is an 86 year old man that just had an aortic valve replacement done through an artery, which is precisely the surgery that I'm hoping for. It turns out that you have to qualify for that procedure, they don't just arbitrarily offer it to anyone. I'm not sure what the qualifications are but after about a week of trying to get it scheduled, I was informed that I did qualify, since I already had open heart surgery 10 years ago and that makes a second surgery of that type more difficult. they tell me that my procedure is scheduled for the following day at noon. If I tried to describe all of the difficulty I had getting to this point, you just wouldn't believe it. At some point it was discovered that I have a very uncommon disease called Erdheim-Chester Syndrome and there have only been about 350 cases reported ever. It has to do with fluid forming around the kidneys and deterioration of the long bones in my arms and legs. Mortality occurring within 3 years of diagnosis, but I seem to have had this for about 8 years so I'm currently okay. As I mentioned the entire procedure is done through an artery, with the exception of a single 3 inch incision made above the heart and through the ribs, while a camera goes in through the artery in the groin, ouch! All body hair is swiftly removed.
Brad showed up way before I was to go to surgery which was good because he kept my mind off of the pending procedure. At about noon they wheeled me down to the pre-surgery holding area where things seemed to be backed up a bit and we waited about 90 minutes until about 1:30 when they wheeled me into the operating room. A guy put a mask over my face and said breathe deeply. I got about one deep breath out when suddenly I awakened in what looked like a garage, but it turned out to be the recovery room and lots of people were assembled to care for me and all I wanted to know was why they put me in a garage? I guess I was a little stoned! They all assured me it wasn't a garage, but I didn't believe anyone. I just figured that this was all that Medicare would pay for. (It sure looked like a garage!) That night was a long one as I had slept most of the day and wasn't ready to sleep at 9 PM when the rest of the normal folk retired for the day, but the nurses kept me company.
My recovery was miraculous. Suddenly I realized I no longer had a breathing problem and blood was flowing at a normal rate through my new valve. It was the difference between day and night. I was asked to walk around the nurses station and literally ran around it, while the nursing staff all laughed. I was cured, just like that. The second day I was sent home and haven't had any down time since. Yesterday I even did Costco and you know how much walking that is. During the time that I've been suffering from this dilemma and I really couldn't tell when it started, but at some point I lost my appetite and about 25 lbs with it. If there isn't blood to carry the fat, it just doesn't go. I got my appetite back and about an inch in my waist with it. Next Monday I have an appointment with my cardiologist and I'm going to ask to be put on a cardiac rehab program just to get some tone back in the area my muscles used to be!
Can you imagine being near death one minute and back to normal a couple of hours later? That's precisely what happened! By the way, I hugged my cardiologist when I saw him and I never do that!