Ever since I learned I would need corneal transplant and retinal repair surgery on my right eye, I have been trying to find a way to obtain the post-surgical care I know I will need. Now, I’m quite self-sufficient, and am able to handle about 80 percent of these needs on my own. For instance, I have been taking eye drops safely for many years. The need to take such drops every two hours during the day will thus not present a significant issue for me. The major area where I will need help is the administration of ointment to my eye, which has proven not to be such a safe proposition in my case. There are two concerns with ointment. First, there is a significant danger of my touching the tip of the tube to the cornea. Second, even if I manage to avoid the first pitfall, there is the concern that the ointment tends to go many other places than the cornea’s surface where it belongs.
For the past week and a half or so, Karen and I have been making telephone calls in an attempt to obtain some assistance two or three times a day (for probably 5 to 10 minutes each time) to administer ointment and help correctly patch the eye in the evening. Here are all the obstacles we have encountered:
- Insurance doesn’t cover the hiring of a home health aid or nurse as they do not consider these surgical procedures to require such care. If I had a serious head injury or a serious injury to my arms or legs, then, yes, they would cover home health, occupational therapy, physical therapy and any other necessary follow up care. The recommendation is to get help from a friend, relative or volunteer agency of some sort.
- My nearest relative is my mom, who lives approximately 50 miles away. All of Karen’s relatives live on the East Coast.
- We don’t have a deep enough pool of local sighted friends from which to be certain of obtaining consistent help. I may get this help once in awhile, but that’s insufficient for this level of severity, where rejection of the cornea transplant is highly likely.
- Organizations providing services to the blind here in the Phoenix area, including the Foundation for Blind Children and the Arizona Center for the Blind and Visually Impaired, “don’t do this” and are unable to offer any serious recommendations of how I may obtain the help I need. If anyone could help me, I expected much better from these kinds of organizations.
- Similarly, other organizations for people with disabilities, such as the Arizona Bridge to Independent Living, don’t offer a program or service that covers my needs. The lady I spoke with at ABIL is at least willing to help me find the help, so, maybe that will ultimately be productive.
- I contacted the College of Nursing at our local university, Arizona State University. An announcement has been posted to all students and staff on a bulletin board asking for anyone interested in helping to give me a telephone call directly. After almost an entire week, there hasn’t been one call!
- Calls have also been placed to some local Lions Clubs and other similar service organizations, for which I am awaiting returned telephone calls.
If I were on AHCCS (our state’s implementation of MedicAid), Medicare, Social Security, Vocational Rehabilitation and all the associated welfare related programs and services, the person at the Arizona Center for the Blind said I would quite likely have no trouble at all getting the help I need. How messed up is that? It is disgusting that I do my best as a good citizen, working an honest day’s work, making money and being self-sufficient, yet I get rewarded by not receiving the help I legitimately need in order to save what little eye sight remains in my only functioning eye! I’m not even asking for a freebie! I’m even willing to make reasonable arrangements for compensation, but that’s apparently not even good enough!
Thank goodness for Jeff and Keri, who are willing to help me out in the beginning. I’ll be down there in Tucson for a week or so. Though I telecommute on my job, I really need to get myself back here as soon as possible. I’ll need to get back home. I shouldn’t have to stay more than a hundred miles away from home in order to get this basic help!
Though I’m not really serious about this, a part of me feels that, maybe, Karen and I should just both quit our jobs, get Section 8 housing, go on Social Security, get AHCCS, Vocational Rehabilitation and all the other trappings of the disabled person on welfare. At least, then, so I am told, I’ll get what I need! Again, how totally messed up is this! Anyone else out here have any brighter ideas? They’d be very much appreciated!
My advice is do it! Go on the dole and get your health sorted out, as a priority. Along the way no doubt you’ll still manage an internet connection in which case you won’t exactly get bored. & You might even be able to supplement your reduced income through a bit of wheelin and dealin if you have to! E g Ebay… Some of those tight non-profits out there ought to be able to give you at least something by way of expenses too. Just don’t feel guilty about claiming legal entitlements which are after all funded by the tax you’re paying right now. It’ll be a shapeshift but maybe even one for the better.
Darrell, you highlight an interesting point. It bothers me that accommodations we need seem to be more sparse if we’re providing for ourselves. I don’t think we should have to receive every service in the history of disability, just to get one service.
The fact that you’re unable to get the help you need to do everything possible to care for your eye after surgery is absolutely appalling to me. And it’s something I’d like to address in social work.
It’s health care… We should be providing better. This is one of my “sore spots”, and I can only imagine how frustrated you feel. I will keep thinking, and I will be keeping you in my thoughts and prayers. I wish you the best recovery.
How hard can it be to put ointment in your eye? Just learn how to do it and stop your bellyaching. Thank your lucky stars that you have what alot of others dont have.
Stop complaining and appreciate what you have. A lot of other people get by on alot less than what you have, and be glad you have a job, your company could say goodbye very easily. So, learn how to put ointment inyour eye with your finger and quit your belly aching!
Some ask why I permit negative, potentially inflamatory comments to be posted on my blog. After all, I do moderate every comment. It would be easier for me to just delete these types of comments without allowing them to see the light of day. So, why do I let this happen? A couple of reasons. First, I believe in the basic principle of freedom of speech. Second, I believe in permitting people to publicly demonstrate their complete ignorance, insensitivity and overall poor moral character in ways that show the entire world. Third, I especially enjoy publishing negative comments from those who wish to remain anonymous, as I feel this anonymity removes every shred of credibility they might otherwise enjoy.
Just for everyone’s information:
1. The doctors do not feel it is safe for me to administer ointment on my own.
2. I have tried doing this myself in the past where I haven’t gotten the ointment in the right place or have actually touched the cornea with the tip.
3. If you or a relative needed this sort of help I’ll bet you would feel quite differently.
Everyone should also be aware that it is certainly not a bright idea to administer ointment to one’s eye using their finger especially after having cornea transplant surgery. No matter how clean it is, there’s still a chance of infection which could cause rejection. I’d have been using such a technique for a very long time by now if it were safe. Also, given that my retina is detaching, none of this surgery is a choice if I want to keep any of my remaining sight.