Thalassemia Patients and Friends

Discussion Forums => Thalassemia Major => Topic started by: troll205 on February 04, 2011, 10:43:25 AM

Title: travel with thalassemia mayor
Post by: troll205 on February 04, 2011, 10:43:25 AM

Hello everyone, I'm 33 years old, live in Padova in Italy, weighing 48 kg, 151 cm high, do 2 bags of 300 grams of red blood cells filtered every 20 days.
I did Desferal up to 17 years later Ferriprox up to 30 and now I take 3 tablets of 500mg of Exjade.
values for iron are fine (always less than 2000)
I am also taking 1 tablet of 500mg of resveratrol
I only found this site today.
my compliments! great job!
I searched news thalassemia in the world because I'm about to embark on a trip to Europe a year!
(France, Spain, Portugal, Holland, Denmark, Germany, Norway, England, Ireland)
I try!
Has anyone experienced long trips?
I will try to find hospitals for transfusions in most of Europe!
I'm tired of having to do rentals for short periods ... @$#%!
I hope not to find problems with the payment of therapies ... I'm lucky ... in Italy therapies are completely free!
I ask your help in understanding how treatments are paid to you who live in other states and to understand what are the best hospitals to turn.
Obviously if you plan to come to Italy please contact me and I will help you very very happy!
sorry for my bad English ... I use google to translate;-)
Gian

Title: Re: travel with thalassemia mayor
Post by: love and prayers on February 04, 2011, 12:03:49 PM

hi!

welcome to the site!

i've always wondered how long trips would work out, i'm sure you'll get wonderful advice from the members of this group- i know i always do!

i hope you have a wonderful time and if you could please contact the places where you plan on getting tranfusions, get the required details and inform them of your coming. oh and you probably need to keep your meds prescription along with you.

have a great time!

Title: Re: travel with thalassemia mayor
Post by: troll205 on February 11, 2011, 07:57:43 AM

the real problem is not finding hospitals for transfusions but understand if I have to pay personally.

i'm lucky because in Italy a thalassemic patient does not pay transfusions and chelation drug, but the offices of health are not well informed about how it works abroad.

once again in this corrupt world the quality of life is tied to money. :mad

Title: Re: travel with thalassemia mayor
Post by: Andy Battaglia on February 11, 2011, 08:22:28 AM

Doesn't the EU provide medical care in any member nations? I thought that if you traveled within the EU countries, that your medical costs would be covered.

Title: Re: travel with thalassemia mayor
Post by: zedzded on February 11, 2011, 06:47:27 PM

I'm sure Andy is right, all EU countries have an agreement to provide healthcare for their citizens.  In the UK you can apply for a health card to use whilst travelling in the EU which will entitle you to health care in an EU country.  I think the difficult thing will be trying to forward plan and get agreement from the hospitals in advance.  I have never attempted this but if it were me I would start with my hospital doctor, plan your trip in advance knowing which countries you will be staying in and for how long.  Try and see if your doctor can refer you to a hospital in each country and have him copy your medical files and agree a transfusion and treatment plan with each of your temporary doctors.  I honestly think the hardest thing will be trying to get these hospitals to agree to treat you temporarily, but I'm sure yor doctor will be able to arrange this much easier than you..  In Italy do you usually buy private travel insurance when going abroad?  You may have to do this to cover any non-thal related health issues you may encounter.

Title: Re: travel with thalassemia mayor
Post by: zedzded on February 11, 2011, 06:58:26 PM

Also is there an Italian thalassaemia society/charity?  You may be able to get more helpful advice from them regarding Italians travelling throughout Europe.  I'm sure that they will have had members who have travelled before and may be able to help.  You could also try and find any similar thalassaemia societies in each of the countries you intend to travel to and ask their advice.  The UK thalassaemia society are a very helpful charity if you were planning a stay in the uk.

Title: Re: travel with thalassemia mayor
Post by: troll205 on February 11, 2011, 09:00:57 PM

it is not difficult to agree with the hospitals of the various states for transfusions.
is very difficult to understand if I have to pay the transfusion abroad.
The European community is not yet true one state.
each state has different domestic laws regarding payment of costs for treatment abroad.
every European country must provide medical care but the payment varies from state to state.
an Italian thalassemic in Italy does not pay anything for the treatment of thalassemia but for trafusions abroad will come as a citizen of the place.

for example: if a Luxembourgthalassemic  in his country pays transfusions, an Italian thalassemic in Luxembourg will pay them.

request information from the offices of the Italian health system is terrible:
I was told to contact the embassies and consulates abroad.
consulates and embassies abroad do not know anything about health and they told me to ask the foreign offices of health.
foreign offices of health told me that I care but do not know how my state I will pay for treatment abroad.

Last year I had a transfusion in Switzerland:
After one month I only paid 90 Swiss francs, but the bill was paid 700 Swiss francs from the Italian state

I hope that the European thalassemia in their country do not pay for trasusioni so I should be treated equally

Title: Re: travel with thalassemia mayor
Post by: zedzded on February 11, 2011, 09:11:12 PM

I thought that if you had free healthcare in your own country you are entitled to free healthcare in any European country and that your own country would pay the bill if required, like your example of your time in Switzerland.  I have a feeling this is going to prove very difficult to organise.  I would definately try and find any thal groups from the countries you intend to visit and ask their advice.

Title: Re: travel with thalassemia mayor
Post by: zedzded on February 11, 2011, 10:40:03 PM

My husband just pointed out that swizterland isn't an EU country so apologies that example doesn't work ;)

Title: Re: travel with thalassemia mayor
Post by: ASTRID on February 25, 2011, 04:09:28 PM

Hi,

i am not really sure how it works, but i can suggest to get in touch with the Whittington Hospital in London for your transfusions when you are in England. they have one of the best thalassemia centre in Europe/world.  You can get in touch with the UKTS (UK thalassaemia Association) Elein the Secretary is very helpful and i am sure she will be able to help you.

for Germany i haven´t had blood transfusion here yet but they do accept the European health insurance card and you only have to pay 10 euro.

Buona Fortuna

Title: Re: travel with thalassemia mayor
Post by: troll205 on February 25, 2011, 10:54:55 PM

thank you very much Astrid!!!

my travel start from Spanish near Girona, Barcelona....anybody know one hospital there?

thanx

Title: Re: travel with thalassemia mayor
Post by: Laura on February 27, 2011, 06:23:22 PM

Hello!

I'll write the same in English and a bad Italian in order to help you with the understanding.

I'm from Sabadell, Barcelona and I am Thalassemic as well. You can come to my hospital (Parc Taulí, Sabadell) or you can go to Barcelona (Vall d'Hebron).

If you need to, I can give you more details about my hospital.

About the cost, you have to bring with you from Italy the European Health Card. It is a blue card that the goverment gives you in order to have health assistance all around the European Union.

Hope it helps you.

Ciao,

 Sono di Sabadell, Barcellona e sono anche talassemia. Si può venire al mio ospedale (Parc Tauli, Sabadell), o La Vall d'Hebron (Barcellona).

 Se necessario posso fornire più dati sulla mia ospedale.

 A proposito del prezzo, occorre la tessera europea di assistenza sanitaria. Dà il governo e lei fornirà i servizi medici in tutta Europa. Voi portate il vostro Exjade.
 Speranza che aiuta.

Title: Re: travel with thalassemia mayor
Post by: troll205 on March 01, 2011, 11:57:38 AM

thank you very very much for the help Laura!!! :wink

Title: Re: travel with thalassemia mayor
Post by: Laura on March 20, 2011, 06:02:50 PM

Hello!

When are you starting your travel? Are you going to travel around alone?

Kisses!

Laura.

Title: Re: travel with thalassemia mayor
Post by: Dori on March 20, 2011, 09:22:50 PM

Thank you for bringing this up. I have read it a few weeks ago and never came back to answer. I finally remember my pasword again. I study law, if that is a benefit, I live in the Netherlands and I am willing to help you. Recently there was a new law on this, but does it works for travellers? Time to find out!

Title: Re: travel with thalassemia mayor
Post by: troll205 on April 01, 2011, 10:05:36 AM

Thanks Dori!

together find if we can travel freely with this problem

Tonight begins my journey around Europe in a camper

Thanks to people like Laura and  You will be much easier

I want to inform this forum about how to make this and the problems encountered during the journey

thanks again

Title: Re: travel with thalassemia mayor
Post by: Dori on April 03, 2011, 09:51:23 AM

I hope and wish you update from time to time this topic. I would love to hear where your journey takes you all. I am bit jealous too;)
in July I would have the chance to travel for the first time alone across the border, but from higher hand (cancelled concert) it's not going to happen. Sigh.

Title: Re: travel with thalassemia mayor
Post by: Zaini on April 04, 2011, 03:13:57 AM

Bon Voyage  :wink .

Zaini.

Title: Re: travel with thalassemia mayor
Post by: nat on April 12, 2011, 11:30:37 AM

Interesting...  :yes

Quote from: Dori on April 03, 2011, 09:51:23 AM

I hope and wish you update from time to time this topic. I would love to hear where your journey takes you all.

:metoo

Title: Re: travel with thalassemia mayor
Post by: troll205 on April 15, 2011, 07:40:49 PM

first transfusion planned for April 20 in Sabadell !!!

thank you Laura! :wink

Title: Re: travel with thalassemia mayor
Post by: Laura on April 16, 2011, 08:33:24 PM

You're welcome.

I asked to one of the girls in Barcelona for another hospital in the South of Spain. She told me to contact the president of the Spanish association for details but she remembered there's thal people in Cadiz and Badajoz.

See you soon.

Kisses,

Laura.

Title: Re: travel with thalassemia mayor
Post by: love and prayers on April 17, 2011, 08:18:55 AM

best of luckkkkkk!!!!

Title: Re: travel with thalassemia mayor
Post by: Dori on April 17, 2011, 05:54:29 PM

It's good to hear from you. After this trip you are totally an European (with all that blood from other countries). I say this as a good thing.  Enjoy!!

Title: Re: travel with thalassemia mayor
Post by: troll205 on April 22, 2011, 12:50:16 PM

20 april....first transfusion in spain...sabadell......wow! THANK YOU VERY VERY MUCH LAURA!!! :biggrin

now I'm in Calpe near Benidorm....wonderfull!!

I hope I will do next tranfusion in Sevilla....somebody knows anybody there?;-)

Title: Re: travel with thalassemia mayor
Post by: Dori on April 22, 2011, 11:03:29 PM

I was in Sevilla this February. Such a beautiful city, although I believe I loved Granada more. However, if my brains are working right at this time of the night then I would suggest you correctly to get not a guided tour in Sevilla but in Córdoba.
Enjoy!
*maybe I should to a Spanish course in Spain this summer*

Title: Re: travel with thalassemia mayor
Post by: Laura on April 24, 2011, 08:03:08 AM

Quote from: troll205 on April 22, 2011, 12:50:16 PM

20 april....first transfusion in spain...sabadell......wow! THANK YOU VERY VERY MUCH LAURA!!! :biggrin

now I'm in Calpe near Benidorm....wonderfull!!

I hope I will do next tranfusion in Sevilla....somebody knows anybody there?;-)

Hello again!

There's nobody in Sevilla but I can tell you the name of the Hospital. It is Hospital Virgen del Rocío.


There was a child (Andres) who usually went there but he had a bone marrow transplant and he's not going anymore.

Have a look at their website and try to find their e-mail http://www.huvr.es/.

Kisses,

Laura.

Title: Re: travel with thalassemia mayor
Post by: troll205 on May 11, 2011, 10:11:00 AM

The second transfusion is done! :biggrin

I was not able to arrive in Seville for mechanical problems of the camper :wah but I did transfusion in La Villajoyosa (Benidorm) exactly 20 days after the previous one! Perfect! :cheer

The transfusion was done in the emergency department :shocked, not in oncology.

Before the transfusion I had to do a chest x-ray and an ECG! ???

Now I'm afraid of the bill to pay! :shifty

This happens in hospitals where you do not know the thalassemia! :pissedoff

Now the journey begins again! :thumbsup

Title: Re: travel with thalassemia mayor
Post by: Dori on May 30, 2011, 12:10:25 PM

I shall reveal the information. He's coming my way. Hopefully it goes smoother here.

Feel free to email me any time.

Title: Re: travel with thalassemia mayor
Post by: troll205 on June 30, 2011, 01:56:19 PM

4´ transfusion did 30/06/2011 in Stavenger, Norway!
Viking´s blood now! :biggrin
now I come back to south of Europe...Danmark or Netherlands.....

Title: Re: travel with thalassemia mayor
Post by: Dori on July 01, 2011, 03:39:26 PM

Hi,
You are still welcome for a city tour by my thourgh Amsterdam. Oho, there I go again. I am battling an infection in my hips so my walking time and distance is limit. But my vacation just started. If you are feeling tired you can always buy a day card for the public transport (or one for 2 days) and took every possible line to a very end of the city. Be a little careful in Bijlmer. There are shopping areas and station of Ajax.

I hope to hear from you, Dori
PS Vikings blood is great!!

Title: Re: travel with thalassemia mayor
Post by: Supergirl on July 03, 2011, 04:45:32 PM

All the best...I guess it goes out to prove that 'we can achieve whatever we set our mind to'....thanks thalpal for being there to help in this journey and many more.
SK

Title: Re: travel with thalassemia mayor
Post by: Dori on July 03, 2011, 08:44:45 PM

I hope you can read this very soon. I would suggest you to tank up in Hamburg in UKE hospital. I do not know Danmark. You can also send me an email.

Title: Re: travel with thalassemia mayor
Post by: Andy Battaglia on July 03, 2011, 10:09:27 PM

If you need any advice concerning Denmark, contact our member Ironman (Kocher).

Title: Re: travel with thalassemia mayor
Post by: Dori on July 08, 2011, 09:09:20 PM

He had his blood transfusion today in my unit. All went well, isn't it?  Afterwards I showed downtown Amsterdam. Tomorrow he leaves for Paris (France). His experience to get a shot of viking blood is very sad and funny. He has not easily access to internet nowadays.

Title: Re: travel with thalassemia mayor
Post by: troll205 on August 26, 2011, 05:47:12 PM

I'm still without internet :(

now I'm in the Spanish Pyrenees, Catalunya. :biggrin

until now 7 transfusions abroad:

Sabadell - Spain...THANKYOU LAURA!!!! :ty

Villaiojosa-Spain

San Sebastian-Spain

Stavanger - Norway...Norwegian doctors are convinced that if you sleep (only sleep in the night...no in the day!!) 1 night in a bed in a European hospital you have a bacteria that  not exist in Norway  ....crazy! :rotfl

Amsterdam - Neederlands... Dore.... thanks again and again!! :thankyou

2 in Girona - Spain

I tried to do a blood transfusion in Millau (France), but they asked me to payed 600€ for 2 bags of blood but with my italian insurance only 200 € in cash after the transfusion!!!! :mad

@$#%  YOU FRANCE!!! :mad

the journey continues! :biggrin

Title: Re: travel with thalassemia mayor
Post by: Laura on August 28, 2011, 08:48:26 AM

Hello!

I'm so glad you could come to Spain again and solve your "French problem".

Where are you travelling to right now?

Hope everything will be easier in other countries.

Kisses,

Laura.

Title: Re: travel with thalassemia mayor
Post by: Laura on January 28, 2012, 12:22:44 AM

Hello!

Are you still traveling? How is it going?

Title: Re: travel with thalassemia mayor
Post by: jotembe on February 24, 2012, 05:36:23 PM

Hello Laura,

he hopefully didn't get lost? Did he?
Tough guy this one.
Even in my younger days I would have assessed it as too exhaustinng.
I hope  that he soon might able to answer.

Greetings from Germany

Juergen

Title: Re: travel with thalassemia mayor
Post by: Laura on February 24, 2012, 09:37:01 PM

Hi Juergen!

I'm sure he didn't get lost. He might be somewhere around Europe...

Best Regards from Barcelona!

Laura.

Title: Re: travel with thalassemia mayor
Post by: jotembe on February 25, 2012, 08:36:33 AM

Hello again Laura,

Five month without any sign of life / post? That seems very unlikely to me.

Best regards to Barcelona - one of the most beautiful cities of Europe

Juergen

Title: Re: travel with thalassemia mayor
Post by: Laura on February 27, 2012, 10:38:43 AM

Hello!

I think he's not really used to write in the forum, that's all. However, I'll send him a text and I'll tell you the feedback.

Kisses,

Laura.

Title: Re: travel with thalassemia mayor
Post by: jotembe on February 27, 2012, 12:11:45 PM

Very kind of you, Laura!

Thanks a lot!

Warm regards

Juergen

Title: Re: travel with thalassemia mayor
Post by: troll205 on March 05, 2012, 07:34:18 PM

Hello everybody!
Thank's Laura for the text. My travel finished in november but I'm still living in my autocaravan in Trentino-north Italy. It's 1 year that I live in my autocaravan but the 15 of March I will rent a house because my girlfriend gets a job here. I know that there's an other thalassemic italian guy, Luca, who wants make a journey for some months. I hope he will write his travel here ;) If I have some news I will write here.

Thank's for all!!  :hugfriend

My girlfriend Giulia sends you a greeting!!

See you!

Title: Re: travel with thalassemia mayor
Post by: Laura on March 08, 2012, 07:58:44 PM

Hello and welcome back to the forum!!!

I'm glad your girlfriend got a job. Hope you'll find one also.

Did everything go well then? You have to tell us about the different places you've been. Maybe you could write a list of cities and hospitals you've been.

Big kisses for you and Giulia!

Laura.

Title: Re: travel with thalassemia mayor
Post by: star4526 on October 15, 2016, 03:57:21 PM

Hi everybody
I'm a master graduated of University of Tehran (the first-ranked university in Iran). I'm going to immigrate abroad for several years, but I could not do because of my disease (major thalasssemia). I have researched about costs of treatment include of blood transfusion, drugs such as Exjade, doctor visiting and yearly checkups and heard up that they are too expensive and i can not pay them myself. I'll highly appreciate your kind to help me about some questions:
- These costs in which country in Europe or Canada, Australia is cheaper?
- How can I receive freely services I mean how can I become under support of an insurance organization? for example student Visa, Work Visa, emigration?
- If I attempt to apply and take admission from a university, I will have complete insurance for my disease?
- and the last question: Is there anyone who can give me a contact number or information about an organization which know about my disease insurance to help me?
Thanks a lot

BR,
Setare Sadeghi

Title: Re: travel with thalassemia mayor
Post by: Andy Battaglia on October 15, 2016, 05:36:30 PM

I would suggest contacting the thalassemia associations in the specific countries you are considering and finding out if there are provisions for students who attend universities in those countries and have special medical needs.