In the USA the prognosis for DCM currently lies at 85~90% in the first year, 50% in the first 5 years and 25% for 10years.
Often the causes of DCM are unknown. However, it is said that one-third of people inherit it from their parents. Other causes can include one or more of the following;
- Coronary heart disease, heart attack, high blood pressure, viral hepatitis and HIV
- Viral infections that inflame the heart muscle
- Toxic: Alcohol and drugs
- Ichemic/ stress-induced/ peripartum Cardiomyopathy, Etc
At first look doctors thought DK’s condition could have been caused by a virus, only to change their diagnosis later to ‘unknown.’
It is currently thought that 2 people in 10,000 have DCM and it is more prevalent in men than women. Most people who have DCM are around the age of 30~50, though there have been a few cases of it being found in children.
Unfortunately, DCM is not curable and it may not present itself until late in the disease. For some, like DK it can be life threatening. The aim of treatment therefore, is symptom relief and control, to decrease the size of the heart, aid the blood to be supplied to the whole body and improve quality of life.
- Medication (such as Beta-blockers, ACE inhibitors, ARBs, anticoagulants, diuretics etc)
- Inplantable Cardioveter Defibrillators (as mentioned above)/ Pacemakers
- Ventricular restoration surgery
- Lifestyle change
In severe cases a heart transplant may be considered.
In our case treatment via the use of medication was impossible. Although it was an option it would mean DK would have to live out the rest of his life in hospital. We had come to the end of options. His only alternative was to consider registering for a heart transplant.
|Between Oct 97~June 2014 around 217 people died while waiting for a heart transplant in Japan.|
In our hospital in Japan in order to receive a transplant one must first have to qualify. This meant you must be under 65 and must not be suffering from other organ failure/ damage or have sustained an incurable blood clot to the brain. In Japan so far only those under the ‘Status 1’ category health have received a transplant. ‘Status 1’ is the most severe, including patients with LVADs or those who are unable to leave the hospital as drops are required. As DK was given this title he was a suitable candidate for registration. However, our next shock was about to come.
Before DK was diagnosed I knew nothing of DCM and Japan’s health services regarding organ transplants. Before this year I never knew that the USA had performed around 2500 heart transplants in 2013, the UK- 194 and Japan- only 37. If you had told me that Japan was one of the most donor lacking countries in the developing world, I would be shocked.
Before this year I never thought the about the implications of myself or a loved one having a transplant. And little did I know that not only would we have to wait an alarming 3~5+ years for a transplant, DK would require an LVADs (Left Ventricular Assist device) in order to prevent sudden death while waiting.
The use LVADs continues to grow in Japan as a ‘Bridge to Transplantation’ in order to fill the gap. There have been 300 cases of LVADs in Japan until Jan 2014. This number is increasing as the number of people waiting lengthens.
Please check out my next post for information regarding LVADs in Japan.
Next time: I will be talking about the issue surrounding Japan and the lack organ donors and transplants.