- For those of you that don't know, I was diagnosed with ALS in March 2007. After two more opinions, the diagnosis was confirmed in the fall 2007 at age 39. This coming August (2010) I will have been married for seven years to an incredible wife, who has supported me throughout. During the course of our marriage we have been lucky to have two wonderful, amazing daughters. Sydney, will be 5 in November. Emily, will turn 2 1/2 in August. Currently, we reside in New Jersey with our Beagle, Trixie.
Wednesday, May 8, 2013
Post 41-Crawling out from under My Rock
Well, this is probably the fourth or fifth blog post I have started over the course of the last three months. Let's see how far I get this time and if it actually gets posted. Part of the initial reason I have not kept up with blogging has been pure laziness. Lately though, fatigue, has been a much larger factor. Fatigue, pertaining to my energy level and more importantly, my ability to speak. Speaking has become a lot more difficult for me over the past few months. I believe I'm still able to be understood, but the volume of my voice is very low and my ability to speak more than a few words at a time is becoming increasingly difficult. Therefore, it is becoming increasingly frustrating to use the speech to text software because the software cannot always detect my voice or the words I'm trying to say, which means I sometimes have to go back and repeat myself several times, which explains the fatigue. In order to complete this blog and minimize the amount I have to speak, I've decided to try a new format. Rather than in a narrative form, I will try to convey to you through bulleting. It will provide a little less detail (which may be a good thing), but hopefully allow me to get more information out. Here we go: (The above paragraph took me over 5 min. to dictate, including making corrections and editing.)
ALS clinic visit. My weight was continuing to drop (179 pounds) and my progression seems to be happening faster. My breathing and Functional Vital Capacity (FVC) was low as well (24%).
· I had lost approximately 50 pounds over the past two years, while increasing my diet of high calorie foods. Obviously, I did not lose the weight through exercise.
· Besides hearing the word quadriplegic to describe my status for the first time, The conversation during this visit began to focus on a feeding tube, and possibly a ventilator through a tracheotomy. As the doctor explained, my best chance to avoid a tracheotomy at this time, was to have a procedure known as a Percutaneous Endoscopic Gastrostomy (PEG), otherwise known as a feeding tube. By having the PEG done at this time would give me the best opportunity to recover from the procedure on my own. The longer I waited for the feeding tube the more difficult it would be for me to recover from the anesthesia and therefore increase the chances of needing a tracheotomy.
· Even though I was still able to chew and swallow most solid foods, I was still not getting enough nourishment, primarily because the process of eating was to tiring. For me, having a meal was becoming an endurance sport.
· Ultimately, I decided on having the surgery and scheduled it for the end of the month. I went into the hospital on the afternoon of Thursday, November 29 for surgery the following morning. Staying true to form, I told no one about this procedure, except for family and a few close friends.
· The surgery was successful and I came home on the afternoon of Saturday, December 1. The ironic thing about the whole episode was that I did not eat anything after lunch on Thursday. The hospital never ordered meet dinner because of insurance will not pay for it because I was getting a feeding tube. By the time the mix up was figured out, of course the kitchen was closed. They did find some food for me, but of course it was not gluten-free. On the day of the surgery, they do not feed you because you just had a feeding tube put in. The day after the surgery, they feed you sparingly to test the tube. Here I was getting surgery to increase my calorie intake and now I have not eaten for over 2 1/2 days.
Some other interesting notes from my hospital visit:
· the ICU unit at Pennsylvania hospital was awesome and highly recommended. At times, it felt like I was staying at a spa. The nurses were awesome! (I even had a little "Florence Nightingale syndrome" going on)
· More people saw me naked in the three days at the hospital then had seen me in my previous 44 years of life. On the plus side, there was no laughing or snickering, but also, no gasps of amazement or astonishment. I'll take it.
· on the Sunday following the surgery, I was home resting. I had a little cold prior to the surgery. Although it was a minor, it was a major deal for me. Since my lung capacity is so low it is virtually impossible for me to blow my nose or cough.
· I had a tough time eating dinner that night and went to bed early. Soon I started coughing/gagging continuously and I was unable to breathe. I was beginning to aspirate. That is basically what happens when you swallow something and it goes down the wrong tube. This occurred continuously for over half an hour.
· This could have been the most scared I ever was in my life. I asked Tracey to call an ambulance. The reality really hit home when they asked me in the ambulance, if I had a DNR. I was reluctant to tell them that I did because I did not want to go out this way. All I do from this point forward was to focus on Sydney and Emily.
· While at the hospital, and I use that term loosely, my breathing stabilized slightly as they put me on oxygen. They started running the various tests, which included x-rays of my stomach. After a while they concluded that I had "free air" in my diaphragm as a result of the feeding tube and would need to perform surgery to remove it and put in a new one. Tracey and I both immediately said no. If I was going to have surgery, I would go back to Pennsylvania hospital. At that point, the doctor left to call down to Pennsylvania hospital to see if he could speak with the doctor who performed the surgery. He then comes back and tells me that in 15% of cases of where a feeding tube is inserted, "free air" occurs and will typically go away within 24 to 48 hours.
· They decide to admit me into the hospital for observation overnight. The next morning a pulmonologist comes by, who coincidentally was making rounds on behalf of my doctor, decided that it was unsafe for me to go home unless I had a tracheotomy. That was enough. At that point we demanded that I be transferred to Pennsylvania hospital.
· I arrived back at Pennsylvania hospital on Monday night, where I stayed until Thursday afternoon after they ultimately diagnosed me with pneumonia. By the time I got home on Thursday afternoon, I was feeling a Lot better.
· My first visitor that Thursday afternoon at home was my boss, who asked if she could come visit. I agree on condition that we do not talk about work. That lasted about 10 minutes.
· The conversation focused on my returning to work. I wanted to continue the conversation upon my return. My boss wanted to come to the conclusion before my return.
· I returned to work the following Tuesday, December 11. By the end of the day, the Director of Human Resources was in my office telling me that I needed to go on disability immediately or the district would pursue "unfit for duty" charges against me. They asked me to work at home the rest of the week and contemplate my decision.
· I was left speechless and basically in shock for the rest of the week.
· Although I had a restful and enjoyable winter break with the kids, most of my time was spent with trepidation about my future and how full-time disability would affect us financially.
· Highlight of the break was a Disney on ice show in which several of our friends and their children joined us.
· To make a long story short, I went out on full-time disability as of Monday, January 7.