Home. Yay!
Tuesday was long and very, very hot. We spent most of the day lounging around watching tv. I did make a trek over to the hospital to pick up our translated bill, that they ended up charging me for....could have at least asked Lady! I ordered the van for the airport run in the morning. If there is one piece of advice I might pass on to others is, don't bother booking thru Geyatours for pick up and delivery....It cost us 60 Euros! The cabs are much cheaper and you just have to be aware of what you are doing. You must use the govt cabs and ask how much before you get in. They must show a license with the rate 0.59 in the window otherwise they are allowed to charge whatever they like and the bill can be hundreds of dollars!! But the cost to the hospital or Greenville Hotel is like 15 leva....12 bucks.....huge difference.
Later in the day, I went to check out the turtle pond in the courtroom that our room overlooks. They're fairly entertaining....I scouted out the area to see if I could get Kevin down but no such luck. I finished packing and we headed down for an early supper....6:15. We walked into the diningroom and went " Oh no, what now?!" The place was a beehive with activity and tons of balloons everywhere. In the corner, sat a dj playing some tunes. Great. Another event that the hotel didn't bother to tell us about. The highlight of our days, was supper in the restaurant! Bleak, huh??! Val comes over, "hey!" What's up Val? No services again tonight"...."no, no, not so much...it's ok...take seat in corner....I look after you!" Humph. Seems greasing the palms does work....he's working towards another Euro tip! A party you say!! Decorator, dj, entertainers, photographer, laying out a buffet....what kind of party? A 4 year old's birthday?? Seriously? Wow.....on the salaries here? Go figure....party went on with clowns and dancers and fireworks at 10 pm....Since we overlooked the courtyard, we had birds eye view. They were beautiful.
At 11, I went to check us out and pay the bill......put in a wake up call for 3 am.....drive coming at 4....out of the country at 6:25.
Wed : 4 am (Tuesday 11:00pm pei)driver shows up....ooooh....looks pretty cranky. Well, I called that one right. He was just rude. He was even more pissed when he wanted to take Kevin's wheelchair from us at the airport...."I'll take him in and get another...just wait a minute....The guy can't walk in that far....asshole.
We got checked in and the driver all but dumped Kevin out of the other chair but the airport assistant was a sweetheart. He chatted all the way to the gate asking about Canada and the treatment we just had. A positive change that reared it's head was Kevin took the wheelchair but when we got to the plane door, with assistance, walked to his seat. Couldn't do that on the way over! The flights were long, the waits in between longer. I really wanted to go pick up some souvenirs especially in Frankfurt as we had a 3 hour wait but when you go with an assistant, they take you to a "holding pen" unless you are late with your connections. I asked to be taken early to the gate where I knew I could handle putting him on the plane. I wanted to shop, dang it!! Well, with the security delays and all, we ended up at the air Canada gate to find out the flight was delayed but would board Kevin early. Crap...good for Kev, bad for shopping :-)!! Oh, well....turns out, the delay went on and on but we couldn't leave the area they put him in. We finally boarded and we had some wonderful stewardesses. Meals were great, and we finally arrived on time....someone had his foot on the gas :-); onto the next gate wait......Ok....we have 2 hours to wait....but there's no shops down here in the bowels of the airport where you go if you are going to the small spots in the maritimes....I can smell Tim's though....15 minutes later, I found them....ahhh.....a little taste of home......flight left on time and we had a stewardess in training and she did a great job considering the turbulence! Landed at 5:17 and home by 6:30....Several friends met us at the airport...that was nice.
What was amazing was the fact that Mr. Jones, was still up at 10, doing his laundy. Just his. Some things will take time to change :-)
Thursday, August 5, 2010
Monday, August 2, 2010
Monday, August 2nd
oops....slept in again.....9:30am.....it's all good:-)
I got up and showered and Kevin did the same. 10:00 phone rang....it was our buddies from Edmonton....Trudy and Jeff Price. "Bus tour is full.....guy at the desk can arrange a driver to take us on a tour....interested?" Are we just driving? or getting out? Just driving? We're in! Meet ya in the lobby at 11:00......
We're ready at 10:20 and starving....arrive at the restaurant to find they closed early today.....great. Rushed back to the room and ordered one breakfast...STAT! It arrived at 10 to 11, gulp, brush teeth and down to the lobby.
Taxi was waiting and away we went. The deal was we go where we want and pay the meter only pay it in Euros not Levas....ok.....well, we had a great driver, clean car and we put Kevin in the front as he wouldn't be getting out when we got out for pics. We went for 4.5 hours and the guy was great. He and Kevin had some great chats and a few laughs and the rest of us ran in and out of some beautiful churches and a couple of malls. I really wanted to buy my youngest daughter a new keepers jersey as she plays soccer. Since Bulgaria has a national team, how hard could that be? Non existent. Oh well.......I did manage to buy a beautiful red Helly Hansen jacket for under $50! I love it....can't wait to fit into it:-)
So much construction, alot of English signs and in the malls (new and they are very proud of them), everything is north american influenced....just like home.....there is a bit of European. I cannot imagine what it must have been like here in 1989-90 when it changed from a Communist country. From what I have learned, I think it must be like allowing a child into a candy shop after never having sugar before....they'll be sick before they learn moderation.
Tour ended 4.5 hours after it started and cost 65 euros....we gave him 80 and watched him grin as it is a substantial amount but he was worth every penny.
We did learn a couple of things today. Driving on the side streets and up the mountain, it was quite bumpy. Kevin would normally be sick as his eyes bounce when this happens however there are no more bouncing eyes! He was very happy about that too. I also pointed out to him that it was over 6 hours since he had peed! Again, unheard of....usually he goes every couple of hours. And he had water and a glass of juice before we left on the tour.....positive, small but huge for him....I have noticed that he is sleeping better at night and staying up as long as the rest of us too.....so improvments have begun. Most see changes within the first couple of months so maybe as the blood starts flowing better and with some rehab, he'll be stronger. It has been really hot and sunny here every day....in the low 30s and we were out most of the afternoon. I then spent 3 frustrating hours on the blogs while he slept for about an hour. It's shark month on the tv, which we both love and Animal Planet so he was entertained while I used the Price's laptop. They arrived at our room for supper at 8:45 and another great supper with Val Kilmar in the diningroom. His real name is Antonio...."My name is Antonio....like Antonio Banderas"....nah....ya look more like Val Kilmar (spelling??) ! Huge smile...."I like him, too"....he was a great waiter......one of the friendly people of Bulgaria. The other was a little hottie on the lobby bar....loved her and she loved us......lots of pics and "come visit Canada!" She was a pet.
It's late and the Price's are leaving in the am .....5....so I'll try to update from my IPOD for tomorrow ....out last day.....
I got up and showered and Kevin did the same. 10:00 phone rang....it was our buddies from Edmonton....Trudy and Jeff Price. "Bus tour is full.....guy at the desk can arrange a driver to take us on a tour....interested?" Are we just driving? or getting out? Just driving? We're in! Meet ya in the lobby at 11:00......
We're ready at 10:20 and starving....arrive at the restaurant to find they closed early today.....great. Rushed back to the room and ordered one breakfast...STAT! It arrived at 10 to 11, gulp, brush teeth and down to the lobby.
Taxi was waiting and away we went. The deal was we go where we want and pay the meter only pay it in Euros not Levas....ok.....well, we had a great driver, clean car and we put Kevin in the front as he wouldn't be getting out when we got out for pics. We went for 4.5 hours and the guy was great. He and Kevin had some great chats and a few laughs and the rest of us ran in and out of some beautiful churches and a couple of malls. I really wanted to buy my youngest daughter a new keepers jersey as she plays soccer. Since Bulgaria has a national team, how hard could that be? Non existent. Oh well.......I did manage to buy a beautiful red Helly Hansen jacket for under $50! I love it....can't wait to fit into it:-)
So much construction, alot of English signs and in the malls (new and they are very proud of them), everything is north american influenced....just like home.....there is a bit of European. I cannot imagine what it must have been like here in 1989-90 when it changed from a Communist country. From what I have learned, I think it must be like allowing a child into a candy shop after never having sugar before....they'll be sick before they learn moderation.
Tour ended 4.5 hours after it started and cost 65 euros....we gave him 80 and watched him grin as it is a substantial amount but he was worth every penny.
We did learn a couple of things today. Driving on the side streets and up the mountain, it was quite bumpy. Kevin would normally be sick as his eyes bounce when this happens however there are no more bouncing eyes! He was very happy about that too. I also pointed out to him that it was over 6 hours since he had peed! Again, unheard of....usually he goes every couple of hours. And he had water and a glass of juice before we left on the tour.....positive, small but huge for him....I have noticed that he is sleeping better at night and staying up as long as the rest of us too.....so improvments have begun. Most see changes within the first couple of months so maybe as the blood starts flowing better and with some rehab, he'll be stronger. It has been really hot and sunny here every day....in the low 30s and we were out most of the afternoon. I then spent 3 frustrating hours on the blogs while he slept for about an hour. It's shark month on the tv, which we both love and Animal Planet so he was entertained while I used the Price's laptop. They arrived at our room for supper at 8:45 and another great supper with Val Kilmar in the diningroom. His real name is Antonio...."My name is Antonio....like Antonio Banderas"....nah....ya look more like Val Kilmar (spelling??) ! Huge smile...."I like him, too"....he was a great waiter......one of the friendly people of Bulgaria. The other was a little hottie on the lobby bar....loved her and she loved us......lots of pics and "come visit Canada!" She was a pet.
It's late and the Price's are leaving in the am .....5....so I'll try to update from my IPOD for tomorrow ....out last day.....
Sunday, August 1st
Really missing home and wished we could have gone earlier. Slept in and went down to the restaurant and got a plate to take back to the room. Kevin was just getting up. Went for a walk around and bought a couple of things. Just had a light lunch and went back to the mall. I wanted to return jeans I bought but it was such a hassle I left with them. They wanted me to come back the next day for the refund but they wouldn't put it back on the visa, it would be in a store credit...no thanks.....so they'll go home with us.
Shopped for a couple of hours, ordered pizza and took a cab back to the hotel. Kevin had rested for the day which is highly recommended. I went to the business centre to write the blog and then we met another couple at the bar / lobby for the evening. It was great. I had a coke and a hot chocolate with cherry......it was so thick I had to eat it with a spoon. It was delicious. Saturday night, there was a Portugese wedding that I watched from our room as it over looks the courtyard. Very nice, and most of us spent the evening telling war stories in the lobby by the bar. We said good bye to Taps and Johnny this morning....we'll miss them, they were hilarious but we've all said we'll visit and I sure hope that happens....
another quiet night...no changes noticed.
Shopped for a couple of hours, ordered pizza and took a cab back to the hotel. Kevin had rested for the day which is highly recommended. I went to the business centre to write the blog and then we met another couple at the bar / lobby for the evening. It was great. I had a coke and a hot chocolate with cherry......it was so thick I had to eat it with a spoon. It was delicious. Saturday night, there was a Portugese wedding that I watched from our room as it over looks the courtyard. Very nice, and most of us spent the evening telling war stories in the lobby by the bar. We said good bye to Taps and Johnny this morning....we'll miss them, they were hilarious but we've all said we'll visit and I sure hope that happens....
another quiet night...no changes noticed.
Saturday, July 31
The internet access here sucks at best. I have spent more time typing this blog of messages on Facebook that never leave the room....frustrating. I just came back from an hour's work in the business centre to the system shutting down. I went out to the front desk.....your internet just crashed...."NO, we just restarted the routers"....Gee....thanks for telling me first! Cripes.
Friends from Edmonton loaned us their laptop but it is still in and out.....but at least I don't have to sit in the sweat lodge and update!
I went to the mall today with another CCSVI'er. Her MS is mild so far and after her procedure, she has a ton of energy, so we jumped in a cab and went to shopping. You have to be careful with the cabs and only take the govt ones. We had a great time and had pizza for lunch....it was so good and so much I took half home for Kevin......we just rested the rest of the day and went to supper with friends....good day....Kevin still very tired...
Friends from Edmonton loaned us their laptop but it is still in and out.....but at least I don't have to sit in the sweat lodge and update!
I went to the mall today with another CCSVI'er. Her MS is mild so far and after her procedure, she has a ton of energy, so we jumped in a cab and went to shopping. You have to be careful with the cabs and only take the govt ones. We had a great time and had pizza for lunch....it was so good and so much I took half home for Kevin......we just rested the rest of the day and went to supper with friends....good day....Kevin still very tired...
supper Canadian style
We have met some fantastic people here and made some steadfast friends.....there were 36 of us at supper. One the other side, was the national bulgarian soccer team.....my daughters would have enjoyed that!
There was a lot of laughs and stories told and new friends established. Several that we've made are leaving in the am so it was a bit sad too. I tried to change our flights to Sunday am but to no avail. They told us that Kevin would be in the hospital for 3-4 days. Some were but not him. So be it. Kevin says he doesn't feel any different but he stayed up until after 12:30 am and partied with the best of them so I think there is some.....:-)
With invites to Edmonton, and Victoria, we left and went to bed.
There was a lot of laughs and stories told and new friends established. Several that we've made are leaving in the am so it was a bit sad too. I tried to change our flights to Sunday am but to no avail. They told us that Kevin would be in the hospital for 3-4 days. Some were but not him. So be it. Kevin says he doesn't feel any different but he stayed up until after 12:30 am and partied with the best of them so I think there is some.....:-)
With invites to Edmonton, and Victoria, we left and went to bed.
Day after procedure - Friday, July 30
I was at the hospital by 8:00am to find Kevin waiting for his breakfast. Sorry dear, according to the fact sheet here, it's not coming for another half an hour. Before I got there, he had been trying to get one of his socks that was stuck at the end of the bed. He leaned over and stuck his hand between the metal bar and the mattress.....and was stuck at the elbow. He called out for about 10 minutes before Jeff, another Canadian, still waiting for his procedure ...one of the leftovers from the day before, heard him repeating "hello!!??".....he got his arm out and helped him back onto the bed. Kevin was not too pleased no nurses came to check on him. Breakfast arrived....bacon and eggs, toast , jam.....looked good...but friggin' cold. I took it to the desk and got it nuked. Then we chatted about the procedure and how he felt. He didn't know what the percentages ended up being. They had given him a shot of something for nerves and a local for the area where the venous line went in. He said he could feel it but didn't remember all of it. He did remember them taking off his clothes and getting on the table. The nurse put "something cold on me and it ran down between my legs and boy did it sting?" He's still trying to get the color off!
Dr.Petrov was behind a little window, separating him and Kevin. They did the right side and Kevin said that it bothered his ear a bit. Then they did the left. He said he heard AND FELT, a large popping noise..."what the frig was that?" Dr told him that the balloon broke. Kevin said it hurt like.....you know. They rethreaded and went back in. He didn't feel them doing the azygos vein which is surprising as it turned out to be the most blocked at 90%. Then back to his room he came on the same bed and they just transfered him to his own and told him to lie flat for the next 6 hours....and left. He doesn't remember them coming back into the room except to unhook the drug bag.
Many liked the hospital food but we didn't like it very much and very strange selections for a cardiac dept...however, I know believe it was for the foreigners only. We have learned that everything is not how it seems though. Caesar salad is not Caesar salad and french onion soup is creamed without bread and cheese, feta is goat cheese and Coke reigns supreme! However.....creme brulee, cheeesecake, and tiramisu is EXACTLY that!! yum!
I think Kevin is disappointed that he doesn't feel any different just really tired. Well, buddy, considering the jetlag, lack of food and what you just went through, I really don't expect much else. It took 15 years to get to where you are now, and I don't think things will come rushing back. Wait til we get home and see how things are then. The fact that your veins are not no longer blocked can only be a good thing.
Around 10am, another doctor came in with Doppler machine for Kevin's reexamination. He was so nice and showed us where the after results. They took pics before and after. He said he was very pleased with Kevin's results. He also reminded Kevin that those with Primary Progressive MS have the least results as there have been years of damage but to wait to see what good comes his way. I think he's right on. He then told us that if we wanted to leave we didn't have to stay another night. The choice was ours.....let's see....your nurses suck, your food is shitty and there is a large Canadian party in the dining room tonight...hmmmm. CHECK PLEASE!
He came back later with papers for us to complete on the after affects, our medical reports, a CD of Kevin's procedure and a prescription for stuff Kevin needed to get from the pharmancy downstairs. Didn't see that coming. "You are free to go now"....ok, but he still has the bandage on from the OR and the IV in.....NO problem, I will tell the nurse to come do this now....goodbye....hand shakes and thank yous....noon came and went. no nurse.....1:30....nurse arrives with next day's menu.....please fill out.....no, thanks....we're leaving now......baffled look on her face....no, I don't sink so........please check with the doctor......30 minutes later, doc arrives. "Yes?" We didn't want you....we just need his IV out so we can leave!" OK....dis is not a problem. I will get the nurse"....finally.
2:30
3:00
3:15......nurse's station (where you will stand forever unless you start saying "excuse me".....after a while, they will look up without saying anything.....they just look at you. " We are waiting to leave." No not today.....look call that doctor, cos, we're leaving. Kevin just needs his bandage checked and his IV OUT.....jeez Louise. Frig. She makes the covert call......whisper, whisper.....hangs up the phone. " The doctor says you are to go to Geyatours"....OMFRIG! " Yes, I know but he needs the needle out of his arm first".....she looks at me, turns to another nurse, says something I sure couldn't understand and the other nurse grabs two pieces of gauze off the shelf and heads down to 611. She takes Kevin's arm and before she could take the tape off that covers the IV entrance, Kevin says "NO, I will take the bandage off and you can pull out the needle"...good luck with that, dear. She grabbed the corner of it and yanked it off, taking the first layer of skin with in, whipped out the needle, put the gauze over it and said to me "You hold!"......she turned and left. The air was blue....Kevin was so pissed. She never came back, and after 5 minutes, the bleeding stopped, Kevin got in the chair and we left. We went to the lobby to Geyatours, as directed by the doc.....no lady go pay at registration. So I left Kevin sitting there, and went to pay......Uncle Visa.....don't hold out on me now! Everything went through fine and over to the pharmacy I went. I stood in line, back aways to give the other person privacy. Seems that doesn't work. Others jumbed in front of me and tried to see everything that was going on. Fine....I moved closer...then it was my turn. I passed in the list....everything on one piece of paper. She went and got everything and wrote on the boxes ...no labels. That will 45o leva.....holy crap.....surprise! It was about $350 Canadian. It is about $1.30 Can to 1 leva.
With bag in hand, Kevin in the chair, out the door we went.
By the way, I asked the doc about the percentages for Kevin: 60%, 70% and 90% in the azygos in the middle section.
Dr.Petrov was behind a little window, separating him and Kevin. They did the right side and Kevin said that it bothered his ear a bit. Then they did the left. He said he heard AND FELT, a large popping noise..."what the frig was that?" Dr told him that the balloon broke. Kevin said it hurt like.....you know. They rethreaded and went back in. He didn't feel them doing the azygos vein which is surprising as it turned out to be the most blocked at 90%. Then back to his room he came on the same bed and they just transfered him to his own and told him to lie flat for the next 6 hours....and left. He doesn't remember them coming back into the room except to unhook the drug bag.
Many liked the hospital food but we didn't like it very much and very strange selections for a cardiac dept...however, I know believe it was for the foreigners only. We have learned that everything is not how it seems though. Caesar salad is not Caesar salad and french onion soup is creamed without bread and cheese, feta is goat cheese and Coke reigns supreme! However.....creme brulee, cheeesecake, and tiramisu is EXACTLY that!! yum!
I think Kevin is disappointed that he doesn't feel any different just really tired. Well, buddy, considering the jetlag, lack of food and what you just went through, I really don't expect much else. It took 15 years to get to where you are now, and I don't think things will come rushing back. Wait til we get home and see how things are then. The fact that your veins are not no longer blocked can only be a good thing.
Around 10am, another doctor came in with Doppler machine for Kevin's reexamination. He was so nice and showed us where the after results. They took pics before and after. He said he was very pleased with Kevin's results. He also reminded Kevin that those with Primary Progressive MS have the least results as there have been years of damage but to wait to see what good comes his way. I think he's right on. He then told us that if we wanted to leave we didn't have to stay another night. The choice was ours.....let's see....your nurses suck, your food is shitty and there is a large Canadian party in the dining room tonight...hmmmm. CHECK PLEASE!
He came back later with papers for us to complete on the after affects, our medical reports, a CD of Kevin's procedure and a prescription for stuff Kevin needed to get from the pharmancy downstairs. Didn't see that coming. "You are free to go now"....ok, but he still has the bandage on from the OR and the IV in.....NO problem, I will tell the nurse to come do this now....goodbye....hand shakes and thank yous....noon came and went. no nurse.....1:30....nurse arrives with next day's menu.....please fill out.....no, thanks....we're leaving now......baffled look on her face....no, I don't sink so........please check with the doctor......30 minutes later, doc arrives. "Yes?" We didn't want you....we just need his IV out so we can leave!" OK....dis is not a problem. I will get the nurse"....finally.
2:30
3:00
3:15......nurse's station (where you will stand forever unless you start saying "excuse me".....after a while, they will look up without saying anything.....they just look at you. " We are waiting to leave." No not today.....look call that doctor, cos, we're leaving. Kevin just needs his bandage checked and his IV OUT.....jeez Louise. Frig. She makes the covert call......whisper, whisper.....hangs up the phone. " The doctor says you are to go to Geyatours"....OMFRIG! " Yes, I know but he needs the needle out of his arm first".....she looks at me, turns to another nurse, says something I sure couldn't understand and the other nurse grabs two pieces of gauze off the shelf and heads down to 611. She takes Kevin's arm and before she could take the tape off that covers the IV entrance, Kevin says "NO, I will take the bandage off and you can pull out the needle"...good luck with that, dear. She grabbed the corner of it and yanked it off, taking the first layer of skin with in, whipped out the needle, put the gauze over it and said to me "You hold!"......she turned and left. The air was blue....Kevin was so pissed. She never came back, and after 5 minutes, the bleeding stopped, Kevin got in the chair and we left. We went to the lobby to Geyatours, as directed by the doc.....no lady go pay at registration. So I left Kevin sitting there, and went to pay......Uncle Visa.....don't hold out on me now! Everything went through fine and over to the pharmacy I went. I stood in line, back aways to give the other person privacy. Seems that doesn't work. Others jumbed in front of me and tried to see everything that was going on. Fine....I moved closer...then it was my turn. I passed in the list....everything on one piece of paper. She went and got everything and wrote on the boxes ...no labels. That will 45o leva.....holy crap.....surprise! It was about $350 Canadian. It is about $1.30 Can to 1 leva.
With bag in hand, Kevin in the chair, out the door we went.
By the way, I asked the doc about the percentages for Kevin: 60%, 70% and 90% in the azygos in the middle section.
Liberation Day! Thursday July 29th
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!
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!
Sunday, August 1, 2010
Wednesday...July 28th
Breakfast comes with the hotel. Strange breakfast, but it is what it is. I think I'll pass the olives, pickles and the coldcuts and go straight for the fruit and toast. Eggs weren't too bad but what's with the wieners? Kevin napped on and off most of the day as he didn't sleep very well.
We met some others at breakfast and decided to go the the market for fruit and water. What a walk ...with 3 wheelchairs! Kevin didn't come...he needed to rest before going to the hospital tomorrow. Bulgaria is not wheelchair friendly....no ramps and a lot of cobblestone. For a 10 minute walk, it took 30 to get those things to the market. Worth the trip though. Rested in the afternoon and then went down to the lobby to see if any others were around to talk to before going to supper.... another great group. After supper, a whole crew of us headed to the lobby to hang out and then we left or should I say crashed! tomorrow is a big day!
We met some others at breakfast and decided to go the the market for fruit and water. What a walk ...with 3 wheelchairs! Kevin didn't come...he needed to rest before going to the hospital tomorrow. Bulgaria is not wheelchair friendly....no ramps and a lot of cobblestone. For a 10 minute walk, it took 30 to get those things to the market. Worth the trip though. Rested in the afternoon and then went down to the lobby to see if any others were around to talk to before going to supper.... another great group. After supper, a whole crew of us headed to the lobby to hang out and then we left or should I say crashed! tomorrow is a big day!
Adventures with Air Canada
Our neighbors, Ron & Betsy, graciously limo'd us to the Charlottetown International Airport :-)....I believe we left from um...oh yes, gate one. Check in was a breeze and we requested a wheelchair and assistance at each gate. It's the only way to go and Air Canada does it well. They got out the automatic lifter and hoisted Kevin up to the door in a narrow wheelchair and took him to his seat. Whew. Step one. After takeoff and a round of drinks, the stewardess sat down next to Kevin and had a great chat with us about what we were doing. Everyone has a story similiar including her. An hour and a half later, we landed in Montreal with our next flight leaving in 55 minutes. " Sorry sir, you have to wait until the others disembark before we can move you".....umm does 55 minutes mean anything, lady?? pfft No., but she was very nice about me asking the second time where the wheelchair was.....response: " I tried to talk to the guys on the tarmack but they are just standing there." Ok. My turn. Excuse me gentlemen. We have a plane to catch in , let's see, 35 minutes. Where's the friggin' chair?! .l....what do you mean you only have one and it's in use?? Plan B boys....I'll drag his ass down the ramp and you better have a chair and an assistant at the bottom....so with 6 minutes to go, we land at the door of the plane....problems again but they handled and got us docked in our Pods! Ok, now this goes a long way to make up for that other crap......gotta say, if ya can, travel in the "lie me fully down with a comforter and pillow" pod.....
8 hours later, and a bit of a bumpy ride, we land in Frankfurt. "Please wait sir until the others disembark before you can be moved"....WTF?? Ok guys, fine, but we only have 55 minutes to make our next flight....deja vous........some large German guy grabbed Kevin's wheelchair, turned to me "come!" I had to run to keep up but we cleared security and made the flight. Lufthansa or something like that, was the next airline. It was a 2 hour flight with "not so good" food. Geyatours decided that they would meet us at the airport and away to the Greenville Hotel, right next to the Tokuda International Hospital. Checked in. Changed rooms. Mother of Pearl, lady, he's in a wheelchair....the tub is 4 feet off the ground! Shower please.
We rested for the afternoon and then headed down to the lobby where we meet a bunch of people either going in or coming back from having the procedure....all Canadians except one couple from Florida. Lots of laughs at dinner and then off to bed.....whew....long day. It is a 6 hour difference for us.
finally, ....good night.
8 hours later, and a bit of a bumpy ride, we land in Frankfurt. "Please wait sir until the others disembark before you can be moved"....WTF?? Ok guys, fine, but we only have 55 minutes to make our next flight....deja vous........some large German guy grabbed Kevin's wheelchair, turned to me "come!" I had to run to keep up but we cleared security and made the flight. Lufthansa or something like that, was the next airline. It was a 2 hour flight with "not so good" food. Geyatours decided that they would meet us at the airport and away to the Greenville Hotel, right next to the Tokuda International Hospital. Checked in. Changed rooms. Mother of Pearl, lady, he's in a wheelchair....the tub is 4 feet off the ground! Shower please.
We rested for the afternoon and then headed down to the lobby where we meet a bunch of people either going in or coming back from having the procedure....all Canadians except one couple from Florida. Lots of laughs at dinner and then off to bed.....whew....long day. It is a 6 hour difference for us.
finally, ....good night.
Sorry Folks!
I have not had great luck with the internet in Bulgaria. First the laptop died a hero's death and then the internet was in and out with no consistency. I was trying on my IPod touch...some messages got thru others....not so much. There are two stations in the business centre and it's like a revolving door. However, today traffic is light. Their server crashed last night and the service was out until now. I booked a reservation and voila! So here we go ....back to Monday....
apparently there was wifi at the hospital but only if you hung out the 3rd window on the 12th floor..........
apparently there was wifi at the hospital but only if you hung out the 3rd window on the 12th floor..........
Wednesday, July 28, 2010
Sunday, July 25, 2010
Uncle Visa says we can go :-)
Our friends and family raised a considerable amount of money for China....so much so, there was enough left over to pay for part of the treatment in Bulgaria! We are blessed.
So, with that and my new relative, Visa Gold, we're starting to pack!
for those wanting this info, here it is:
Flight leaves tomorrow at 18:25 (6:25) from the Charlottetown Airport. We are flying AirCanada with arrival in Montreal at 18:58 (6:58). We have exactly one hour to make our next flight however we have requested a wheechair and attendant at each gate. Flight AC874 departs Montreal at 19:55( 7:55) with arrival in Frankfurt, Germany at 08:55.....not sure on the time change yet but it is suppose to be an 8 hour flight....so roughly (4:00 am PEI time)....and as a treat from a wonderful friend, this portion of the journey, is in FIRST CLASS!! (pics to follow!) Our flight to Sofia departs at 10:05 arriving at 13:20. Suffice it to say, the old man will be tired.
So, with that and my new relative, Visa Gold, we're starting to pack!
for those wanting this info, here it is:
Flight leaves tomorrow at 18:25 (6:25) from the Charlottetown Airport. We are flying AirCanada with arrival in Montreal at 18:58 (6:58). We have exactly one hour to make our next flight however we have requested a wheechair and attendant at each gate. Flight AC874 departs Montreal at 19:55( 7:55) with arrival in Frankfurt, Germany at 08:55.....not sure on the time change yet but it is suppose to be an 8 hour flight....so roughly (4:00 am PEI time)....and as a treat from a wonderful friend, this portion of the journey, is in FIRST CLASS!! (pics to follow!) Our flight to Sofia departs at 10:05 arriving at 13:20. Suffice it to say, the old man will be tired.
........And so begins another adventure!
This time, we're not heading west young man, we're heading further east! Bulgaria. Sofia, to be exact. We're heading to Europe, Baby!......Sounds exciting, huh? Well, it ain't what ya think but it's all good. Kevin is scheduled for testing and **fingers crossed**, hopefully, treatment for CCSVI, at a wonderful hospital there. Not sure if he'll feel much like "touring" even if there is time. Time will tell.
CCSVI. What is it? "Chronic cerebrospinal venous insufficiency... it’s a chronic (ongoing) problem where blood from the brain and spine has trouble getting back to the heart. It’s caused by stenosis (a narrowing) in the veins that drain the spine and brain. Blood takes longer to get back to the heart, and it can reflux back into the brain and spine or cause edema and leakage of red blood cells and fluids into the delicate tissue of the brain and spine. Blood that stays in the brain too long, creates “slowed perfusion”...a delay in deoxyginated blood leaving the head. This can cause a lack of oxygen (hypoxia) in the brain. Plasma and iron from blood deposited in the brain tissue are also very damaging. " ( this if taken from http://csvi-ms.net/en)
I have been working on getting Kevin tested for CCSVI since last November. Ironically, it was before the floodgates were opened by W5. I wrote to Dr. Zamboni, including every address I could find at his hospital, to no avail. Kevin was added to the list of possible patients for the Buffalo trial in November....no further contact. Dr. MacDonald in Ontario was no longer taking patients. Nothing in the US either.....Jeez.
While reading a blog entry on this subject, I came across someone scheduled for Bulgaria and got Kevin added to the waiting list. It was just days before they sent the forms and then 24 hours later, we had a date of July 29th. We can see that day now :-) . We did go see our family doc who tried to get us testing done in Halifax, NS and Montreal but they were no longer able to do the tests on MS patients. Figures. Next option, please.
Bulgaria.
We didn't enter into this decision lightly. In late 2008, Kevin and I spent 5 weeks in China for umbilical cord stem cell treatment. It was an incredible experience! The change in Kevin was staggering. To see him mobile, not napping, brought back earlier memories of better times. The effects of that treatment lasted a year. Many see Kevin today and comment how China didn't work. China worked. Stem cells are the way to go WHEN the MS has been stopped. We didn't go there looking for a cure, we went to get Kevin some quality of life back.....and we did. We were just hoping for more time. This past year has been very difficult for him. He is pretty much confined to a wheelchair and horizontal when not. The boys at Rod's garage have kept him going but the last couple of weeks, with the heat, have seen him in bed most of the time. 'nuff said.
Fingers and toes crossed that he'll soon be back driving his '55 chevy.
We have been on the waiting list since early May. Everything I have read or heard about this treatment and the care at this hospital, has been extraordinary. Can't wait.
CCSVI. What is it? "Chronic cerebrospinal venous insufficiency... it’s a chronic (ongoing) problem where blood from the brain and spine has trouble getting back to the heart. It’s caused by stenosis (a narrowing) in the veins that drain the spine and brain. Blood takes longer to get back to the heart, and it can reflux back into the brain and spine or cause edema and leakage of red blood cells and fluids into the delicate tissue of the brain and spine. Blood that stays in the brain too long, creates “slowed perfusion”...a delay in deoxyginated blood leaving the head. This can cause a lack of oxygen (hypoxia) in the brain. Plasma and iron from blood deposited in the brain tissue are also very damaging. " ( this if taken from http://csvi-ms.net/en)
I have been working on getting Kevin tested for CCSVI since last November. Ironically, it was before the floodgates were opened by W5. I wrote to Dr. Zamboni, including every address I could find at his hospital, to no avail. Kevin was added to the list of possible patients for the Buffalo trial in November....no further contact. Dr. MacDonald in Ontario was no longer taking patients. Nothing in the US either.....Jeez.
While reading a blog entry on this subject, I came across someone scheduled for Bulgaria and got Kevin added to the waiting list. It was just days before they sent the forms and then 24 hours later, we had a date of July 29th. We can see that day now :-) . We did go see our family doc who tried to get us testing done in Halifax, NS and Montreal but they were no longer able to do the tests on MS patients. Figures. Next option, please.
Bulgaria.
We didn't enter into this decision lightly. In late 2008, Kevin and I spent 5 weeks in China for umbilical cord stem cell treatment. It was an incredible experience! The change in Kevin was staggering. To see him mobile, not napping, brought back earlier memories of better times. The effects of that treatment lasted a year. Many see Kevin today and comment how China didn't work. China worked. Stem cells are the way to go WHEN the MS has been stopped. We didn't go there looking for a cure, we went to get Kevin some quality of life back.....and we did. We were just hoping for more time. This past year has been very difficult for him. He is pretty much confined to a wheelchair and horizontal when not. The boys at Rod's garage have kept him going but the last couple of weeks, with the heat, have seen him in bed most of the time. 'nuff said.
Fingers and toes crossed that he'll soon be back driving his '55 chevy.
We have been on the waiting list since early May. Everything I have read or heard about this treatment and the care at this hospital, has been extraordinary. Can't wait.
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