Today is the big day. I know others are looking at CCSVI as being the miracle for MS but I'm not yet convinced. For us, the procedure is important because blocked veins are as much a health risk as blocked arteries. To have them open is necessary for maintaining one's health. If, down the road, a connection is made to the cause or cure of MS, Fantastic! But right now, someone or something has to give Kevin a fighting chance. Not to have it done in our own country is discrimination. They do this procedure, including the testing, for other conditions ....off the soap box and into the details.
We are up at 6 as Kevin's appointment is at 9 am. Dressed, me feed, him fasting....out the door to Admittance. As I said before, this is not a country with access for disabilities. Some streets and sidewalks are beautifully made with paving stones and cobblestones and they have large curbs. What they don't have is the ability to get up and down the sidewalks! They also park just about anywhere so it is difficult to find a place to get through especially with a wheelchair. The hospital is right across the street from the hotel, about a 5 minute walk through the parking lot and in we go.
This is a new, large, clean hospital. The front entry is very large with lots of elevators, registration (where you pay), a little bank, store, cafe, pharmacy etc. Straight ahead is Geyatours Travel where we must check in as we are "medical tourists". There, we met Diane and Leysa. Well, that's probably going to far. I introduced myself to them, Leysa responded and I got a bit of a grunt out of Diane. I think she's a little pissed at me because when we were accepted to come for the procedure, we were advised to contact her with our information on travel and any travel requests. I sent her and the others at the hospital and cc'd Steven Simonyi-Gindele (on every email I sent)all of Kevin's info including our travel and accommodation information. I also requested prices for pick up at the airport, a wheelchair and possible tours. I emailed this same request every two weeks for two months. Nothing. So on the day we were leaving, I sent another and cc'd Prof Grozinski and a few others. I was very short and to the point. This time, a response requesting flight details....jeez, lady. With no confirmation, we left for the airport. Now, I know that she got into a little hot water from the hospital for not responding. So, all I got was the look over and a grunt. Whatever. There were lots of grunt responses to come, I just didn't know it yet.
Within 5 minutes, a nurse came and without saying a thing, nodded and grabbed Kevin's wheelchair and zoom zoom down the hall. Into the Diagnostic Dept and "Here. You fill these now." Four pages of his medical history and we wait some more. Soon, a very pretty, tall, long blonde haired doctor comes to meet us and she takes us for the following tests: ECG tracing, BP measurement, general physical examination, a cerebrovascular Doppler sonography and Echocardiography. They also take blood work. The Doppler was pretty cool and she told me what I was looking at and what was normal and what wasn't. It shows both the jugular veins but not the azygous which is the most important (So we were told by the doctors). This vein is deep in the body cavity. However, she got Kevin to sit up and redid the jugulars. She explained that by doing this, she can tell if there is the possibility of blockage in the azygous vein. When the person is in a sitting position, the jugulars flatten out more if the azygous is flowing properly. Kevin's veins didn't change hardly at all so she said he more than likely had a high percentage of blockage there. She also said that the doppler is only an indicator of blockage percentages and that the real test was when Dr. Petrov actually did the procedure in the angiographic laboratory. Kevin's percentages according to the Doppler, were 60% in the right jug and 70% in the left. She also explained to Kevin that if a person with MS has trouble walking, they usually found a high percentage blockage in the azygous. At this time, she gave Kevin a document explaining what they were going to do and some info on the procedure including stenting. We were informed that if a stent was required, it would be his decision to make and Dr. Petrov would answer any questions he might have. It is interesting to note that no one that we knew, needed to be stented yet.
Soon after this we were taken to the sixth floor, the cardiology department and given a tiny private room. We asked for a double where I could have stayed but none available. No prob. They came and put in an IV with 3 valves on it and gave Kevin, what we Canadians have coined, "the Bulgarian haircut". For the procedure, it is necessary to shave part of the groin area! I left. He didn't really need 3 women staring at him naked on the bed:-)....it didn't take long. Most of the nurses say nothing to you and the odd one actually take the time. Some even have a sense of humour which appears to be rare or just very different from ours. So, Kevin wasn't overly pleased to have the dry shave but it was one more thing done. We have the first appointment of the day....great. Let's get to it. 11:00......12:00.....1:00.....4:00.....7:45.....nothing. By this time, I had cased out the floor....it's either heart attack patients or Canadians for CCSVI. I met Taps from Toronto and shortly after, Johnny, his best friend. Taps and I had a great conversation while Mr. Jones slept off and on and fretted about when he was going. Can't blame him a bit. He hasn't eaten in 24 hours! Taps gave me valuable info as he's already been here a couple of days and had the procedure. He also had one vein restenosis and was waiting for Dr. Petrov to arrive. I told him we hadn't heard a thing all day, not a nurse was around. He told me to get my butt to the nurse's desk and to find out what was going on.....and not to take any crap from them. They don't like to tell you anything but will be helpful if you ask....or at least some of them will. Up I go, run into another Canadian. "Did your mom go in yet?" Nope. What time did you come in? 10 am....oh, we came in at 8:30.....Another...."I came in at 9 but they have cancelled my procedure until tomorrow.....really? Hey Nurse! My husband in room 611 is starving and still waiting! Is he cancelled cos nobody has told us anything!? No, your husband will have his procedure this evening....ah....apparently there is overtime here too.
At 8:30 pm, a male nurse comes in, grabs Kevin's chair and says "come, we go now! You have fake teeth, leave on table!" Gone. I took this time to go eat. Several people we met were getting together for supper and told me to come join them when Kevin went to the OR. So off I went back to the hotel and had a great time with a bunch of new friends. They told me Kevin would be gone for two hours unless there were complications. I ran back, a little scared of the "wild dogs" but made it to the front door of the hospital to find it locked...So I ran around to the Emergency entrance and went in that way. Kevin was already back for about 10 minutes and lying flat, IV still in for the antithrombotic drug....(blood thinner). He was starving so I gave him what I had saved from his dinner tray.....not much. They also told him to drink two bottles of water but didn't give him any. Good job I had packed him some. (They told another person the next day, to go buy the water???) The doctors were incredible but the nursing care left a lot to be desired. I tucked him in and left a half hour later to the sound of howling dogs. "how will I know that you got back to the hotel ok??!" .....If you see me in the morning, I made it :-).......good night!
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