Saturday, February 6, 2021

In search of support

 

So at a regular eye check-up at the SNEC, I was diagnosed with Fuch Cornea Dystrophy . The first doctor that attended to me ordered a scan after I casually mentioned that my eyesight seems blurry at times. I didn't go back to the same doctor after the scan but was seen by a seemingly younger doctor. Well you can't ask why because the whole clinic is swarmed with patients many complaining to the nurses of the long wait.

The problem as explained by the second doctor seems scary. She said the cells of the inner layer of the cornea are depleting at a faster rate than normal. She said my cataract problem on the other hand is slight and she advised I should delay any cataract operation as long as possible as there is a risk that a cataract operation will worsen the dystrophy problem. Alarmed I asked how bad the condition is currently and what is the worst that can happen. She did not want to tell how bad the condition is (or maybe she didn't really know) but kept on saying it varies with different individual how fast the condition deteriorates. The worst thing that can happen is loss of vision which requires a cornea transplant. Meanwhile the doctor's body language showed signs of impatience. Being a hypochondriac and not receiving enough information I asked her to repeat the name of the diagnosis again . She rolled her eyes took out a piece of A4 size paper, tore out a quarter page and wrote the name on it. She said she will review me in 8 months and dismissed me without prescribing any medication, not even eyedrops when the common symptom is dry eyes. So much for subsidised government hospital care but then you can't blame them. It was 4.30pm and there were still quite many patients waiting outside.

Back home needless to say I did extensive research and gathered information mainly from website of doctors accompanied with the skillful services they offer. I tried to locate support groups or forums which don't seem to be many but chanced upon one in the US. I applied to be a member and was accepted with warm welcome by the moderator who talked about visiting Singapore way back in the 90s and how amazed he was when he checked the google map now. Another kind lady shared her experience with her surgery which she described as painless and smooth. I am really amazed at the amount of information I can obtain from this group. You have doctors who patiently answer in detail loads of questions raised and give very useful advice to address concerns. The website also has updates on the latest treatment as well as trials carried out using the latest medical technology. Members of the group also comfort and give moral support to one another. I learned there are many types of surgery involved depending on the condition and they don't sound so scary as how my good doctor made it.

It makes me wonder why these doctors have the time and make the effort to help answer the support group members' concerns. It is not surprising then that the US is home to one of the largest number of Civic Participation organisations in the world. This is because it is far from a nanny state like ours.

So for a start I should also stop behaving like a spoilt kid. As one of the doctors in the above mentioned support group advised a member if her doctor doesn't talk to her she should just go find one who does. He added humorously that you get what you paid for. 

Well looks like I have to start looking for a private specialist.



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