Wednesday, August 19, 2009

Update

I am really excited about a new Indian restaurant in town. Sajni is on Queens Blvd around 65th and they have the most awesome buffet for lunch -- inexpensive! The owner knows all his clients, and they play Bollywood videos while you eat! And most of it is soft food that is easy for me to eat! I am in love!

Unfortunately, my other favorite newish place, Tierra Sana, lost their hold and couldn't stay afloat. It was good vegan food, with wi-fi and very East Village decor, but it was a little pricey. I couldn't manage to get people to go with me, probably because of the price or maybe too esoteric. Obviously not enough support from the neighborhood. That's why I am happy to see such support for Sajni.

Summer is finally here, about 2 months late, but I'll take it. I am enjoying myself on "concrete beach" in front of my building -- no sand or ocean, but lots of people-watching and sunshine, squirrels and birds.

Thank you for all the feedback on my post of 7/26 re the ad for MND/ALS with Sarah Ezekiel, which was made for British TV. In case you missed the post, you can chcck it out any time and follow the link to watch the video

In the meantime, you can follow me on Twitter
and/or "friend" me on Facebook

Thursday, August 6, 2009

My PEG tube replacement

I was surprised recently when I expressed to someone that I didn't have the time to do something, and she said "why, what do you do all day?". Anyone who reads this will see how I can literally be out all day for a 5-minute procedure. When you have to rely on Access-a-Ride or an ambulette, you spend a lot of time sitting around and waiting. And, anyone who goes to a Medicare/Medicare/HMO doctor can attest to the fact that a 30-minute appointment means a 3-hour ordeal of waiting in the waiting room, then the exam room, then waiying again while the doctor will come "right back", and is attendng to other patients who have the same appointment as you.

I've learned that, when blogging it is not cool to mention names of professionals or institutions, or even people, unless you don't mind being googled and asked to elaborate, or even sued. So email me privately if you want names and I will reveal if I can. If I have something really nice to say, I will of course mention names.

Anyway, this time, I had to specifically request that the hospital change my ambulette company because the ambulette company they have been sending does not have the mechanical lifts. Instead, they sent vans with ramps that are used to using with manual wheelchairs that they push. But the ramps are steep and dangerous for an electric wheelchair. I had to say a prayer as I got to the top and the wheelchair literally jumped into the van and risked ramming into whatever was in front of it [sometimes another wheelchair passenger]. So that worked out, even though I was supposed to be at the endoscopy registration by 10:30 and the ambulette was supposed to come to pick us up between 9 and 9:30, and didn't arrive until 10:15 and picked up someone else, taking a roundabout route to the city, finally gettng to the hospital after 11. Louise traveled separately, and was there for a while when we got there.

Then began the paperwork, signing and filling out multiple pages and receiving my 100th packet of papers outlining patient privacy. This was in a room that was so crowded that I had to stay outside in the hallway with the wheelchair. The hospital I went to is very old, and very drab. The walls are in bad need of a paint job and the nurse directing "traffic" looked like she really hated being there. She handed me a locker key, told me to enter a depressingly dark locker room whose dressing cubicles couldn't fit my wheelchair, and I had to take off everything from the waist up and put on a hospital gown. I thought the whole atmosphere was kind of depressing for people going through procedures which could be very frightening. My initial PEG tube placement was in this hospital, and I recall being alone in recovery and the whole next day in a hospital room with a hospital staff that yelled at me because they thought I was deaf, mentally challenged, or both. This time, I had a bunch of people standing by and promising me that would not happen again. Still, I dreaded the possibility of staying overnight.

When my GI doctor came in, he deferred judgement to a nurse named Frank, who had been there for my first procedure, as well as when the tip of my feeding tube had to be relaced about 2 years ago. Anyway, he said to the doctor: "this thing was put in 4 years ago. There's no way it's not gonna crack." and he turned to me and said "you're gonna have to be put under so the doctor can do it endoscopically". The doc said "I know that's not what you want to hear". And I wrote on my board "please please try the other way first", and he said "Well, we'll try, but I don't think it'll work. This tube is old!"

So they had me wheel myself in my chair and tilt it back and recline. Then I saw the anesthesiologist come in -- I recognized his face and South African accent from five years ago. They let Ellita come in and hook up my bi-pap breathing ventilator [which we brought from home]l, which was a good move. They told me they were going to give me a light anesthesia, which turned out to be Michael Jackson's favorite-- propofol aka diprofan. I remember him sticking the needle in my hand and the next thing I heard was "Fern, you're all done". I went to the recovery room for about an hour, and I was free to go.

By this time it was after 1, and the recovery room nurse called my ambulette to pick me up and said they would pick me up at the emergency room entrance. Now, just to say why I take the ambulette in these cases instead of Access-a-Ride. To take the later, you have to book one to two days in advance and tell them what time to pick up for the return. With certain doctor appointments and a procedure that I just described, it is impossible to know exactly when I will be finished. I my case above, I could have even had to stay overnight. So it was impossible to book a return pickup time. But this turned out to be the ambulette ride from hell.

First off, we were waiting for over an hour at the emergency exit like we were told to do. Suddenly I got the idea to have a lok at the vehicles standing at the corner, about 3/4 block down the street. Sure enough, my ambulette was waiting there. I called Louise and Ellita to come down the street [they'd been waiting in the hot sun] and Ellita and I boarded. There was already a couple on board, the wife of which was in a wheelchair in front of mine. We had another pickup along the way, and we ended up getting in my door about 4pm and rushed out for an early dinner at a fabulous new little Indian restaurant on Queen Blvd. So out for about 6 hours for a 5-minute procedure.

But, here's the "hellishness" of the ride: the couple who had been in the ambulette when we boarded, looked like they were right out of "central casting". They could have played the part of trailer-park residents. The husband had no front teeth, scraggly hair and tattoos. His skinniness made him look almost like a junkie. The wife, who I inferred was the patient, looked unhealthy indeed. I thinnk I overheard somethhing about dialysis, and they seemed to be regular clients who knew the driver with familiarity. When we arrived in Astoria, Queens to let off the fifth passenger, the husband also got out of the van, motioned for the driver to wait [which didn't make us happy, since we were dying to get home, and I hadn't eaten since 11pm the night before]. Well, this man lit a cigarette, took a few drags himself and then, to my dismay, handed it to his wife sitting in the van in her wheelchair in front of me. It's impossible to protest when you can't speak and especially when you're choking from the smoke. So Ellita told them I had respiratory problems and they finally put the cigarette out, not a moment too soon.

By the time the driver started up the van, the front was full of smoke and I began coughing up a storm. When I stiffened up and couldn't help kicking the woman's wheelchair, she went beserk on me. The husband saw I was choking and said to Ellita "is she okay?" and Ellita said "She's coughing from the smoking!" The woman said "well what do you want me to do? I had to have a smoke!" and the man said "Oh, if I knew, I would'na done that!" But he didn't exactly ask us if it was okay.

Here's the best part. When we arrived in front of my building, they both yelled out "this is so nice!" and the woman said to Ellita "I would like to live here. Can you tell me how she [meaning me] got into such a nice building? How can I get in here?" And Ellita said "you have to buy a co-op"
"Oh, it's nice to have money" she said.
Ha! She should only know!!