Since My Surgery
4 Year Update
I will soon celebrate my 4-year anniversary since my tracheostomy surgery and I wanted to share how everything has been going.
I have had a mixed experience with my trach. I am sooooo happy I got the trach and would never go back to living without it.
Memory: I have to report that my memory has gotten better now that I am getting sleep and oxygen at night. I am sad to say, though, that my memory is not fully recovered and is not at a level that I would expect for a person my age. I still have trouble remembering some things, and if I am sleepy, it gets worse. But I am still better than I was before my surgery and I hate to think how bad I would be if I had not gotten my trach.
Infections: I have had probably a dozen infections in the past 3+ years. Most were mild infections that required an antibiotic. However, I have had two infections that were so nasty that I was genuinely scared about what might happen to me.
The first was a strep infection that hit me like a ton of bricks. I was feeling tired but not really sick. My wife and I were walking down the aisle of an antique warehouse when it hit me and I felt like I was going to fall over. In a day I was so sick I was just plain miserable. I had a 105 degree fever one day and then went to the doctor for a prescription. The doc did a culture and discovered it was strep.
The second infection that was really nasty was a slow-growth, antibiotic-resistant mycoplasma something or other. Turns out this infection is rare and virulent. I had a PICC line inserted in my arm. This is a catheter that is threaded through your arm, past your shoulder and into your heart to deliver medication 24/7. I had a pump I carried around for roughly 6 weeks and my doctor was threatening to pull my trach.
I was terrified at the thought of pulling my trach. I could not imagine life as a zombie again and I would get depressed at just the mention of going back to that life. I told my doctor that I was ready to do anything to keep my trach ... my sleep apnea would destroy my life and I would surely lose my job.
Eventually the infection cleared up and luckily I had insurance to pay for it. That infection lasted 10 months and cost a total of roughly $20,000 to treat. I thank God that I had insurance at the time.
I have learned the hard way to never touch my stoma with my finger. I always use a tissue or cotton swab to touch my stoma. I also switched to a new trach tube that is easier for me to clean and I have not had any infections for several months now.
New Trach Tube: I have switched from my Montgomery Cannula to the Hood Stoma Stent. I find the Hood is more convenient since it is one piece of silicone rather than a tube, an O-ring, a face plate, etc. The Hood is one piece and that helps. The Hood is also flatter on my chest, so now I can wear a tie and close the collar of my shirt.
However, the Hood also can be coughed or pulled out easier, and so I have had to learn how to reinsert the tube myself. This is a very good thing. I have accidently pulled my trach out a few times and each time had to go to the ENT to have it reinserted. I love my ENT and his office people are great, but I can't afford to pay for him to reinsert it every time I accidently pull it out. I have learned how to reinsert it myself now ... YIPPPEEEE.
Career: I have to say that my job situation is ... good and bad. I have not been able to get a job as a computer programmer, which is what I was trained for. I had some very good job interviews, but as soon as they got a glimpse of my trach, I noticed that their demeanor changed and they never called me back to offer the job to me. I have been forced to change my line of work.
I am now a home caregiver. I have found, though, that in spite of the fact that I do not have insurance or vaction days, I still love this work and do not miss sitting in front of a computer all day.
Just Braggin: I have to also mention that I am very happy I started this website. I am so thankful that there were good people out there who helped me when I was considering getting my trach and I am happy I can help those who are now in the place I was.
I have had a couple of doctors mention that they refer their patients to my website and I had a couple of nurses ask if they could use my cartoons for a presentation they were doing. If you are a doctor or a nurse, please feel free to use my website. If you need to copy off anything for a presentation or to discuss with someone, please feel free. I am here to help. I am not a doctor, but I can share my experience.
Also, if you are considering a trach and want to chat, I am more than happy to answer questions and share my experience. Again, I am not a doctor but it is good to talk with someone who has been there before.
I also want to mention that there is a very good support group for people with trachs called "Neckbreathers." If you are interested in joining us, go to www.yahoogroups.com and search for Tracheostomy. You will find our little group and you are welcome to join us.