Hi All,
Well this is it, after all the running around and airport closures, we are getting ready to head out.
We take the Eurotunnel at 8am and then drive to Poland.
Very excited and very very anxious.
Will keep everyone posted
All the best for those who are also making the journey
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Jeff and I wish you well. Have a safe trip. Look forward to seeing updates. Love Mum.
ReplyDeleteWell i cant seem to figure out how to make a new topic in the blog... so will post here, from last night sorry to shattered to post then
ReplyDeleteHi all,
after a very long day that started at 3:30am, we have stopped over just outside of Hanover Germany.
We have been through England, France, Belgium, Holland and now staying in Germany for the night.
We will head to Poland in the morning.
Livabird is out cold at the moment, real trooper to do this long journey.
On the up side our Luftansa flight has been cancelled tomorrow, So we made the right decision and we will get a full refund.
We had a great dinner at a Bavarian restaurant. The weather has been in the 20's and very sunny
Anyways on to day 2, we just woke up after the best sleep both me and Jayne have had for months.....
ReplyDeleteWe went to breakfast and wow... it was amazing.... fresh fruit, egs, fresh bread all kinds of meat and cheese.....
We are just getting ready to head off and next post should be from katowice.
Our flight is cancelled so we made the right decision, and besides if not for the volcano, we would not have experienced what we have so far. Plus we will get a full refund on our flight
just a quick update, we made it to Katowice Poland, just Arrived, going for a drink and dinner stiff so will post more after That
ReplyDeleteWe woke up after the best sleep both of us have had for ages.
ReplyDeleteWe had a wonderful breakfast at the hotel in Germany.
We then hit the road and travelled through Germany. As we had our trusty SatNav (called Sean as the voice is an Irishman) we decided to detour to Berlin for a nice lunch.
We drove through and looked at the sights. We then had a great lunch in a pub built in 1270.
We then got back on the road to Katowice.
The motorways in Germany are just fantastic and no speed limit
We then hit Poland.... Well it was the bumpiest ride we ever had, could not go much over 50 without flying in the air.
We just thought oh no 3 hours of this
Luckily only lasted 20 miles and then the roads were back to normal.
We arrived in the hotel at Katowice about 8pm, and went for a nice dinner.
The hotel is nice and the staff are super friendly.
I have uploaded some photos to my facebook,
Well night night all, will update tomorrow, but it is a rest day for us
Hi All,
ReplyDeleteIt has been a fairly uneventful Day 3.
Woke up and went to breakfast, quite a nice buffet with lots of selection.
Livabird stayed in bed as she was quite exhausted and still in lots of pain.
I managed to get some pain killers for her and this has helped.
I popped up to see Marta & Marta at Euromedic. Was quite interesting as it is just a room here at the hotel... must admit i did wonder when i first went in... a couch and a couple of laptops
I sat and chatted with both the Marta's and they are both wonderful and very helpful. We sat for about 30 minutes just chatting.
I then took Liva out for a stroll(well guess it was more of a push) around the area, very nice park. It is an interesting place, lots of young people who speak English quite well.
We had a small lunch at the hotel then up for a rest.
When we woke, we went to Pizza Hut, yup you heard it right, it is beside the hotel and is very very good, polish beer was great.
We are now relaxing, well i am, Liva is thinking about tomorrow, eye test at 9am and then MRV at 6pm.
Katowice seems quite nice but the old communism state is quite apparent here, it is progressing into the free market, but is a long process, but i think Katowice is getting there
Well thats it for today, sorry it is not too exciting
More tomorrow as Livabirds Poland Adventure continues
Day 4
ReplyDeleteHi All,
We just returned from the eye test, i am posting pictures on my facebook
Quite interesting with the eye scan, if you look keep in mind the red area is bad!!!!
We met all the people we have been chatting with it is just great.
Patrick and Marek(the 2 drivers/guides) are just fantastic. They are both real cards and really make this experience fantastic. And Marek is about to embark on a 4-5 month walk around Poland to raise money for MS.
So we are now waiting and Patrick will be taking us to the MRV at 4pm today, so another update after that, Liva is really up and encouraged today
Well we have come to the end of Day 4.
ReplyDeleteLiva has had the MRV but not sure the outcome, fingers crossed.
It was not as bad as she anticipated, took about 40 minutes.
Today was a good day, having lunch at The Patio, the best meal I have had in ages and cheap too.... If you are here you must go there...
I have looked at the pictures on the CD from the MRV but as I am not a doctor i really not sure what they show, little concerned that the jugulars look fine, but lets wait and see tomorrow.
Just getting ready for the procedure so will cut this short and update tomorrow after the procedure
Oh and 1 correction, i said Patrick, but actually it in Majiec, and they are great guys making this experience wonderful
Well All, the day you have been waiting for, we certainly the day Liva has been waiting for...
ReplyDeleteAfter next to no sleep for both myself and Liva, we got up and made our way down to where Maceik was waiting to take us to the clinic.
First up was the blood test and you probably know Liva by now and she freaked at having the blood test, but did not take long.
Next was to wait in turn for Dr Simka to do the Doppler, we watched him do one of the other people in her room, very business like but super knowledgeable. When it came to Liva's turn he spent quite some time whilst she was lying down. He checked both jugulars, then had her sit up and did the same but seemed to concentrate on her right jugular.
Then came the moment of truth... keep in mind i was worried that there was nothing going to show up. Then Dr Simka explained.... he had never seen anything quite like it. The left jugular had a blockage along with a membrane, the right was also blocked, but he explained when she was sitting up the right was 100% blocked, he had never seen that before.
He then went on to the sorry not sure how to spell it, the azagori vein, and said it was incredible, good ole Liva had 2 yup you heard right 2 veins where there is only ever 1 vein, again he said this is the first time he has ever came across this... Leave it to Liva, as mentioned Dr Simka is quite business like but in the case he was smiling and even giggling because of this, i have posted a picture of him smiling away.
After the good news, it was Liva's turn for treatment. She was in for almost 1 hour which is much longer than most...
They stented the right vein and ballooned the left.
Afterwards Liva had warm hands and feet, her feet were pinky white not PURPLE as they have been for months or years. Also warm hands and 2 fingers that were completely numb and not able to use prior were completeley normal as she was wiggling them all about.
Her face also had rosey cheeks again she no longer looked pale.
The next thing she did was pick up her book and read WITHOUT glasses.
She was very energetic afterwards as well, and this is within the first hour of the treatment ending.
She is now resting and we shall see in the morning about any further developments.
All in all 150% success and i have never seen her like this, brought tears to my eyes...
Dr Simka is an AMAZING man and there is nothing we can say or do to thank him enough
All i can say is "SAINT Marion Simka"
more updates coming soon
Well spent a whole afternoon at the shopping centre, not once was there pain, Jayne stood up a few times and even took 2 steps. Not once did she need to go to the bathroom, she wore proper jeans for the first time in months and even took them off all by herself, seems trivial but is massive
ReplyDeleteWell as Day 5 draws to an end, it has been a very good day.
ReplyDeleteI took Liva to the Sky Bar and we had a few cocktails each
We were there a good 2 hours and not once did she have to go toilet, considering before just having a sip of a drink made her go.
She is getting some pins and needles again, but she forgot to take her LDN yesterday so thinks that is what might be the problem.
She still has no pain which is amazing considering all we did today.
She is now going to sleep and we are planning to visit Aushwitz tomorrow.
Night all
Well start of Day 6, day i have been dreading.... first needle in the tummy... but I did it and Jayne said i did a great job, did not hurt, what a relief, we are off to Auschwitz soon
ReplyDeleteLiva is still feeling pretty good although she is very tired, probably did a little too much yesterday.
Still feeling no pain and still very warm. She is very alert. The one thing i noticed while having lunch yesterday is how bright her eyes look.
Day 6 and we made a very emotional trip to Auschwitz and Birkenau.
ReplyDeleteI am posting pictures but under a seperate album as they deserve their own space for memorial.
Auschwitz was very daunting and overall such an emotional experience.
To be there is person was so incredible. Going to Birkenau(Auschwitz II) was also an emotional experience as it was quite apparent from entering the gates why this camp was built.
That is all i will say on this, it is something very personal that each person needs to experience on their own.
Liva did very well, putting the emotions aside, she was in tears in one particular place but she is glad she made the journey.
Physically she is doing very well, when we got back to the hotel, she got out of the car all by her self and walked to the back of the car where i was getting the wheelchair out of the boot. Granted she held onto the car, but she felt her balance was good and the fact she walked over was incredible.
She continues to be very alert and bright. Joking around alot which i havent seen in ages.
A little pain but the time in Auschwitz and Birkenau was very very bumpy but she is feeling fine now.
We are hoping to go back to the Bavarian Beer hall for dinner with our new friends tonight and have a few litres of beer
thats it for now
Everyone take care
Well as Day 6 comes to an end, it has been a great day in contrast. Seeing Auschwitz and Birkenau was very emotional but then we ended the day with a super dinner at the Bavarian Beer hall with our great friends Enzo and Lori, what a fantastic time. Lots of good food and BEER. Jayne was SOOOOOOO animated tonght, considering the long emotional day it was great... haven't seen that in a long long time... I am looking forward to tomorrow to see what it brings..
ReplyDeleteThe other thing to note is when we arrived back at the hotel after our visit to Auschwitz... I was getting the wheelchair out of the boot of the car. When i turned around... there was standing Liva. Granted she held on to the car, but she made her way to the back of the car.... so all i have to say is
"1 Small step for Liva is 1 giant step for CCSVI"
The other thing that is important to mention and probably most important of all is the Great Friends we have made and together with them they have made this an experience never to be forgotten
Thank you to Helen, Ian, Jamie, Enzo, Lori, Belinda, Jan, Hennie and Hans, you have made it so special to both me and Jayne, words can't describe how we feel about all of you
Well Start of Day 7... we have decided to stay put in the hotel as we have done so much over the past few days. A day of rest on the 7th day... Jayne is still out cold which is great as she has had a couple of solid night sleeps. We will be going out with our great friends again tonight for dinner
ReplyDeleteDay 7 and now for the downside of the treatment.... Jayne has so much energy that we shopped til I dropped :-) She is doing very well, just spent the afternoon chilling at the shopping centre... what a fabulous centre it is....
ReplyDeleteWell Day 7 is almost over and it was a time for reflection back over the last week.
ReplyDeleteWe had a fabulous dinner with our great friends from Italy, Enso and Lori, we have made true friends for life.
We ate again at the Patio, fantastic meal, great service and very very reasonable. Jayne has been in stitches laughing, Enzo had her in tears today with laughter... the only time i have seen her in tears has been tears of pain and despair.... so you can imagine what i was feeling.
The whole experience has been marvelous and Liva has been feeling great. But to make friends like we have with Enzo, Lori, Helen, Ian, Jamie, Belinda, Hans, Hennie, Hans, Paul(jaguar here on TIMS) and Lorna is absolutely amazing. Everyone has bonded so much and each and everyone has been so supportive of each other.
We are looking forward to getting back to our daughters as we miss them very much and they miss us and can hardly wait to see their mum in such good spirits. It has been very hard on both of them to see their mum like the way she was before the treatment. For them to see their mum with a smile will mean the world to them.
I am writing this listening to Susan Boyle singing "How Great Thou Art", well the words in this song explains our feeling towards Dr Simka and the whole Euromedic Team.
We have reflected on this treatment as well as our visit to Auschwitz and wow what a rollercoaster of emotions this week has brought.
As a husband of someone who is suffering so much and seeing the difference in Liva, well i hope and wish that everyone can experience what i have, and as such we are determined to see this through so that the less fortunate that can not make the trek to Poland can experience what I have.
We are both sad but happy as we don't want to leave our good friends but are so happy that we have met such wonderful people.
Well that is it for now, will sign off tonight and will be thinking of everyone here on TIMS and everywhere else with people suffering with MS and all the family and friends that are also affected.
I will keep updates going from our journey home and also in the coming days/weeks and months.
Well it is time to go now...
ReplyDeleteWe are just about to go for breakfast with ou great friends from Italy.
We will then go and see the 2 Martas to see what the follow up needs to be.
Then it is on the road... where our next update will be from Hanover Germany.
Liva is still feeling very good.
Well we have made it to our hotel in Germany safe and sound, made pretty good timing.
ReplyDeleteJust taking a rest and then off to dinner. Jayne travelled extremely well, no pain whatsoever...
Well end of day 8 and we are in a wonderful hotel in Germany and just finished a great dinner. We had to say goodbye to some great friends, but friends we will keep in touch with for a long long time.
ReplyDeleteWe have now arrived in Bruges Belgium, the drive was quite good and all is fine. Beautiful 16th Manor hours. Just resting for a bit then out into the magnificent gardens for a nice beer.
ReplyDeleteWell this is our final day/night until we arrive back home.
ReplyDeleteWe left our wonderful hotel in Hanover Germany about 10:30am.
After giving the shot to the stomach, which is going very well, only 3 more to go
We made 1 stop and then arrived in Bruge Belgium around 3pm.
Liva travelled very well yet again, no pain at all, this is quite amazing because just a week ago whe was in agony travelling in the car.
The Hotel Jan Brito is absolutely marvelous.... 16th century manor which has kept all its charm and decor... some pics on my FB.
Liva had a lie down for a couple of hours while i sat in the beautiful gardens drinking Belgian Beer
We then walked around the market square looking at all the canals and buildings.
We just finished a wonderful dinner sitting outside in the square, just gorgeous.
Here is another big thing.... Liva ate her whole meal, the steak was quite big, she has not eaten so well in months/years.
We topped it off with a lovely Chocolate Fondue and again she ate and ate....
She is now taking a nice soak in the tub, first in ages...
Thats about it for now, been a wonderful day and a perfect way to draw this chapter of Livabirds Poland Adventure to a close.
We plan on doing some shopping in Bruges tomorrow before heading home.
Well this is the final day until we reach home. Just had breakfast. Jayne took a couple of steps with the cane, still needs to relearn how to do this but it is a start. We are going to do a bit of shopping in Bruge before heading back to the UK. Next update will be from home. Thanks for all the support
ReplyDeleteWell this is the end of the Day and we are back in Northampton.
ReplyDeleteWe spent a few hours shopping in Bruges. We then had a wonderful lunch where Liva again ate very well and I had lobster, the first time in years.
We then hit the road where we made our way to the Eurotunnel.
AS our original ticket was for monday, we had to buy a new ticket across... and they are rip off artists cause the charged us 200 euros just one way, oh well we had to go....
We then were set aside at customs and given the third degress. I explained we went to Poland for an operation for my wife. They asked why we went there and I then explained because the UK are to ignorant to offer the procedure. I showed them all the documentation from Euromedic and they let us through.
Once in the UK we zipped through the M20 and M25 only to hit a traffic jam on the M1 where we sat for almost 2 hours...
We finally made it home where are kids were really happy to see us.
Glad we are home now.
Liva is doing really really well...
So this brings our Poland Adventure to a close, but not Livabirds continuing adventure, we will keep updating as thing happen or don't.
A new adventure in 6 montsh when we go back to Poland for a checkup.
Thanks everyone for your support and kindness over the last couple of weeks.
Well Liva went to her GP yesterday and he was very pleased for her.
ReplyDeleteHe noticed a difference right away as the last time she went she was in lots of pain. The positive attitude was very apparent.
He is very interested in CCSVI and really wants to monitor her.
He is a great GP who is very supportive and interested in what Liva has to say. He said she has taught him so much about MS.
I gave Liva her last needle in the tummy, good thing as i was running out of space for the needle
Live continues to do well, she is feeling good and i think she will get stronger each day.
We will continue to make updates but not as often as when we were in Poland.