Hey everyone!

This is a very difficult topic for me to discuss. When you do not find sufficient medical care, when you are a victim of medical gaslighting, you can think of going to consult abroad.

If, like me, you've worked hard for years paying crazy amounts of money into social security, insurance and taxes in the foolish hope of being properly cared for if, by some misfortune, you get sick, it gets really infuriating to come to think that we will still have to pay and perhaps go abroad to get out of it and live again instead of surviving in extreme suffering.

So, why and how to get treatment abroad?

I am not advertising anyone here and all that follows is only information that I have been able to gather over the years, and personal opinions that are subject to change over time and the inevitable changes of life. I give an idea of ​​some costs purely as an indication because I cannot guarantee that these figures are always correct. Find out if you wish.

Make up your own mind and let's discuss it, shall we?!

Are there clinics that specialize in the diagnosis and treatment of pericarditis?

Such clinics exist, but they are very rare. And the procedure to be admitted there is often an obstacle course.

The Pericarditis Alliance patient association made a video of questions and answers with these great specialists (see their YouTube channel or follow the link in the stories highlight of my Instagram account). You can therefore search based on the names of the doctors who appear in this video. You will notice that they call themselves “center of excellence” for pericarditis.

·      CLEVELAND CLINIC (Dr. Allan KLEIN) - USA

It is one of the leading centers for pericarditis. Before the pandemic, they received 2,000 patients with pericarditis a year, from all over the world.

Several procedures exist:

o   Re-examination of your medical file: you send your reports (if possible with cardiac MRI) and they re-examine your file in order to give you an opinion on your pericarditis. Everything is done by computer. Cost: between 600 and 800 USD.

o   Make an appointment: you must register on a secure hospital database. Once registered, you communicate your history and your medical file via this secure platform. If you are accepted, you can request an appointment. Cost (just for the MRI): between 3,000 and 5,000 USD.

o   Study programs: study programs are underway with Anakinra/Kineret and Linocept/Rilonacept (Rhapsody Trial). There are many advantages to being accepted into a study program: coverage of the costs of treatment and examinations, regular follow-up (every 15 days, or 3 months, or 6 months - blood tests, MRI, etc…). The cost becomes affordable, but you still have to be able to go to the USA.

o   Pericardiectomy: surgery consisting of removing part of the pericardium. Depending on the damage, the surgeon will remove a specific part. It is not a single operation as one might think, there are several types of operation. The Cleveland Clinic operates on 2 patients per week, which gives an idea of ​​their level of expertise for this very rare surgery that few surgeons perform.

Many foreigners visit this specialized center which has special services, including for installment payment plans or to help you obtain intervention from your insurance.

I don't know their exact motivation, but I imagine that calling themselves a "center of expertise" can be an argument for telling our healthcare insurance: ok, I've seen cardiologists in my country and none of them is able to help me effectively, so I am justified in seeking help from leading specialists abroad and you must bear the cost of their intervention.

I think for a pericardiectomy it's really worth going there because the risks are very high, and maybe they can offer another solution before this last chance surgery.

PROS:

Hyper-specialized doctors.

Study programs where, of course, we are a guinea pig, but for which we can benefit from financial and medical support. On the other hand, I guess there are test or placebo groups.

CONS:

Everything is in English and it is not easy to communicate if there is a problem, even when checking in.

The cost of travel and accommodation, and possibly treatment (but get information because study programs are cheaper and, as I said above, there is a possibility of coverage by your insurance I think).

There would be about 20% of failures, that is to say that they can tell you that you do not have pericarditis even if you do the examinations on site.

It is a cardiology service specializing in pericarditis, they will not look for other possible causes that could be at the origin of your pericarditis. They do not cover this flaw in medicine which consists in taking into consideration only one disease at a time, or one organ at a time, and not the whole human body with its possible other diseases, which will nevertheless interact. This is something I will never be able to understand in the current western medical system.

For my part, the pandemic, the extreme fatigue, the cost and the risk of not being treated (either because my case would not be accepted, or because the origin would not be found) mean that I haven't been there. But if I had to come to the pericardiectomy, I think I would do everything to get there.

·      Dr. Massimo IMAZIO – Turin - Italy

He is the only specialist I know in Europe who is part of this very closed circle. I tried to make an appointment, but by email = I did not receive any answer, and by phone = only in Italian (no English or French). A dialogue of the deaf and a closing door.

Still for Europe, I think that Germany is often more at the forefront of medicine. But I don't know of any hospital that specializes in pericarditis. If you know of any, please contact me by email or leave a message on Instagram.

And if you have any information to communicate that could be of interest to other patients, do not hesitate to communicate it as well.

A PART OF LUCK, A PART OF DETERMINATION, BUT ABOVE ALL, A LOT OF COURAGE.

Pericordially yours,

Vali