MDS in Greece

[olgah]

Good evening from Greece.MY father was diagnosed with MDS in Feb,2009. The first doctor simply told us it was an old person's sickness and simply take him home and let him die.After some resaearc my sister and I did on the web,we discovered another doctor and went to him. He was given Epogen but after 6 months, the therapy stopped because the national health system in Greece would not cover the cost and we would have to pay 3000e per month,something we could not afford. The only treatment he is getting is blood transfusions,and that too is tough because we have to replace the blood he ususe and Greeks are not known blood donors. I guess my point is we do not know anything about his condition and his doctor is always busy and quite rude at times and we cannot ask him any questions. The past 2 months he has become worse. He can barely walk and is always sleeping. His memory has become weak.I just want to know what the final stages of MDS are. My father turned 73 this August. Unfortunately there is noone to ask here in Greece and we are going through a lot of difficult times as a country. Any help would be more thann welcome. Thank you very much.

[Neil Cuadra]

olgah,

It is disappointing to hear about the medical care your father has gotten, his health now, and the health care situation in Greece.

His weakness, fatigue, and memory loss may all be due to the same cause: a lack of oxygen-carrying red cells in his bloodstream. If he could get Epogen again or blood transfusions when he needs them then these symptoms might be reversed.

Epogen is a product of Amgen. I suggest that you contact Amgen Greece (phone +30-210-344-7000, fax +30-210-344 7050) and ask about their Amgen Assist program, which helps patients pay for Epogen. Their United States assistance program is described at amgenassist.com. Ask them if there is an equivalent program in Greece. Also ask them what other patient resources they know of. We all know that there's a financial crisis in Greece, but Amgen is an international company with lots of resources.

Greeks as a whole may not have a high rate of blood donation, but you and your sister and other family members could talk to everyone you know personally and ask for help. If you could get 1 dozen, 2 dozen, or more people to agree to help your father by donating regularly (every few months, starting now), you might be able to repay the blood bank for the units of blood he needs. Ask everyone you talk to to help you recruit more people. You could even let them share photos of your father before and after he became sick and ask for help saving his life.

I also suggest that you ask the Hellenic Red Cross how else you can help your father keep up with his need for transfusions. They may have other ways to help, suggestions, or resources to help you run your own blood drive. And they will know as well as anyone how to deal with cultural issues.

You asked what happens in the final stages of MDS. It depends on which types of blood cells an MDS patient is lacking, just how low their counts are, and other factors like their general health. When MDS patients die, it's not directly from MDS but from symptoms caused by a low red cell count, a low white cell count, or a low platelet count. Without enough red cells (anemia) a patient may suffer congestive heart failure. With a very low platelet count (thrombocytopenia) a patient may die from bleeding into the brain or intestines. Patients with a very low white cell count (neutropenia) are often in the most danger because they are subject to infections and may succumb to pneumonia or other bacterial or fungal infections. If there's any good news in all this, it's that measures can be taken to keep patients comfortable when it's clear that the end is coming, and they may simply go to sleep and not wake up. But having low counts doesn't mean you should give up hope. Some people are able to live with mildly low blood counts, so they don't have to reach normal levels, just avoid critically low levels.

I hope that some of these suggestions will let you and your sister help your father. He might have more resolve than you realize and with help could regain the strength that he's lost. I wish you the best of luck.

[olgah]

Neil,
Thank you so much for your helpful suggestions. Our circle of friends and my sister and I donate blood every 4 to 6 months. We never though about contacting the Red Cross. I will call them tomorrow and the company as well. Thank you once again.
Olga

[Chirley]

Hi Olga, as part of the EU, are you able to access care in a neighboring country with more relaxed health systems?

Regards

Chirley

[olgah]

Chirley,
We can not get any help from the neighbouring EU countries because the costs are covered only when your country cannot offer treatment. But things are awful here.My father went for his blood transfusion today and sent him home ( something time consuming and expensive as he pays for his transportation) because the hospital had no blood,though we have our own blood bank with three extra pints of blood. The system here is hopless. Unfortunately, we can do nothing. Thank you though for the time to try and find a solution.

Take care,
Olga

[Chirley]

Hi Olga, I'm sorry that you and your Dad are going through this.

Did you know that Australia has the largest Greek population (outside Geece) in the world? In my city we celebrate Greek culture and food every year with a Panyiri (spelling) festival. It's extremely popular and because we are very multicultural it's a wonderful experience to attend a Greek festival and mix with all ethnicities from all parts of Africa to Asia, South America etc.

This festival helps us to celebrate our diversity while we encompass the best bits of lots of cultures (in my case, the different foods are fascinating).

Good luck to your family and I hope the transfusion problems can be fixed soon.

Regards

Chirley

[olgah]

Hi Chirley,
We used to live in Sydney.Came back to Greece in 1981. Still have many relatives there and you are lucky as I believe Australia to be one of the best countries to live in. Thank you for your support. All the best to you and your family.
Take care,
Olga.