Trach-ties
Trach-ties
My Story - Update 2
The battle with Medicare has been won! Well to a point. Part of the Medicare reform bill of 2004, going into effect January 2004 WILL cover home infusion of IVIG if condition warrants! Needless to say after reading the bill word for word (yes boring!) I called Medicare to verify this. Unfortunately, the people working for Medicare were less informed than I was. After many calls and getting no where, I enlisted the expertise and assistance of The IDF (Immune Deficiency Foundation), who, come to find out, helped draft that section of the reform bill. Before my next infusion was due the wheels were turning and my infusions have been done at home since mid-March 2004! Strange thing....I tolerate them better since my body isn't in 'battlestation' mode to the environment,no more redman syndrome, it can infuse faster, and despite an increase in dose the cost is still less than a day at the infusion center. I not only tolerate it better, I am less wiped out once it is done. The good thing is since I have been getting them for so long the nurse only has to stay until I am 'ramped up' to the maximum rate, which means that we start it, then change my dressing and she doesn't really spend that much longer, maybe 10 minutes, than on just a dressing change day!
In April my dose was increased by 50% to see if it would help my rate of infections, muscle status and respiratory status. I still have my PICC line. The consensus is, 'if it ain't broke don't fix it', since I tolerate PICCs without infection and my port only lasted 3 weeks and had to be removed due to sepsis. I have had PICC lines last a LONG time. The one we just replaced had been in for 23 months! I just have to go have the flange sutured when the sutures fall out of my skin (about once every few months).
June 2004: I made it to my daughter's graduation! With an extra dose of IVIG and the masks and usual precautions we did at the previous one. With a different venue we were more cautious than before, but despite it all I made it. By the time my daughter crossed the stage, I was limp and not breathing the best, but I saw her graduate. Once that occurred I was wisked off to the van and brought home for more aggressive treatment, but I had done it!
The summer of 2004 has been better for me in some ways. With the landscaping project almost done I am able to go outside in the yard weather permitting. Mother Nature has been kind, we have had fall like weather for days at a stretch, and using my patio umbrella on my chair I have gotten outside. Did you know you can get a sunburn THROUGH an umbrella? After getting one I did some research. Patio umbrellas are only rated for SPF 45. So it has to be umbrella and long trousers. See, we do learn something new all the time.
Unfortunately I have had to be back on steroids most of the summer. Any time I try to taper them off my respiratory status get dramatically worse. I have also spent a good deal of the summer on one antibiotic or another. I just can't seem to get rid of and keep away the tracheobronchitis crud. Thanks to "The Vest" I haven't had pneumonia!
My PTC is also back. Not a visitor I was hoping would make a return visit, but we knew it was basically inevitable. Most shunts only last 2 or 3 years. I got a good ten years out of mine. The deterioration of my vision and headache were the first symptoms to return. Stuff I thought I could handle. But then it progressed to where now I have times when the occipital throbbing is intense, I loose my hearing, loose my vision and feel like I am going to pass out. Those of you who have passed out before know the sensation I am talking about, things spin and go grey, and that funny feeling around your ears. A few times I have pushed it trying to get to my chair, only to find out it wasn't kidding, I did lose consciousness. Ooooppps. Guess from now on I'll believe it and not think its just the sensation. Hopefully the new neuro I have found is as good as she seems and will know what to do. But with my overall status I don't know if any Neurosurgeon would replace/revise the shunt.
Guess I will have to come up with new milestones to reach for. Friends have said the kid's graduation from college is one to strive for. That's reasonable. Better to keep it short term, less dissappointments that way.
The Fall of 2004 brought another increase in my IVIG dose. Rather than double the dose every two weeks it is now weekly at 20 Gm per dose. So far it seems to be working out well. I don't start relapsing after day 9 or 10. The theory is I use up the immunoglobulins faster than a 'normal' person. Thank goodness they are being done at home. I still tolerate them much better than when I was going to the hospital for the infusions.
The Winter of 2004 has brought another hurdle to handle. We had been told that getting another insurance would help decrease our out of pocket expenses, which is still hundreds of dollars a month despite Medicare. My husband's employer has more than one hundred employees. We had been told initially that my Medicare would remain primary for me and the other insurance secondary. Unfortunately we were misinformed. After hours on the telephone with Medicare, trying to make myself understood we were given the correct information. The new insurance becomes primary since it is a large company and Medicare is secondary. That meant a change of providers of my IVIG. Granted all the companies are 'acceptable', but the one I had been with for the previous years had gone above and beyond professionally, as well as very pleasant to work with. Kudos to "Annie" at Coram Healthcare and my nurse "Barbara"! I'll miss you all!
Quite a bit of time has gone by. I was remiss in keeping this up to date. It is now August 2019! We have moved twice in the mean time. I am still here! I got to play a supervisory role in both moves since my weakness has progressed to the point of a more suped up powerchair is required. I have continued to establish goals for myself. I have seen both my children graduate high school, both graduate college, both now married (my son most recently in Nov '19 to a wonderful girl), witnessed the birth of my first grandchild, and been here to see their 2 younger brothers, and now have the goal to reach to see my son have his first child. We are all very excited. We had both their weddings at our homes. Our daughter at our previous home days prior to moving to our present home where our son got married in the yard. They both wanted to make sure I could attend. A few close family and friends joined us in both situations.
9/11 made things interesting for me. To be outside our home I require oxygen tanks, and masks over my face and neck/trach. Being military dependent my medicines were dispensed at a military facility. I was denied entrance onto a base when the sentry would not allow my entry onto the base despite my attempted explanation to obtain the meds. I can understand I probably looked like some sort of terrorist between the oxygen tanks, the masks, etc.. But lets be reasonable! Thank goodness my meds are now mail order.
Despite pneumonia three times a year and long term IV antibiotics each time with limited available to use considering my allergies. So far (Aug '19) I am still kicking...just not as high as I used to. I am now in a more suped up wheelchair. I now have the contoured seat and back, ability to recline and raise legs, along with a headrest. Much better than spending the day with my head on my shoulder since I am unable to hold it up. Once again thank you to Pride Mobility for a great chair.
