Wednesday, August 27, 2008

Article written by Chris...

How To Cope With Bone Marrow Transplant Process

Hello, my name is Christianto Perdana. I am 17 years old. I am a Bone Marrow Transplant (BMT) patient. Before Bone Marrow Transplant, I suffered from AML (Acute Myeloid Leukemia). As a BMT patient, I want to share with you about my experience and my feeling during the BMT. I hope it will help you especially if you are a BMT patient and need tips to cope with your condition.

Tips 1: You Have To Keep Yourself And Your Environment Clean & Hygienic

As a BMT patient, I think the first thing you have to do is to keep yourself and your environment clean & hygienic. Because usually the BMT patients' immunity are low and not strong enough to fight the infection. If you keep yourself and your environment clean & hygienic, it will prevent the germs, bacteria, virus, etc to infect you.

Every time you eat your food or medicine, always wash your hands with soap. Also after you meet someone and after you are from outside. If you wash your hands with soap, your hand will be free from germs or bacteria. Also your caregivers must always wash their hands especially after they are from outside or meet someone.

It is also better if you keep your tools clean. Always clean your food's tools like plates, spoons, etc with soap and it's better to have your own food's tools. If you use the others' tool like toys, books, etc, always clean the tools with antiseptic solution like alcohol, etc first before you use it. In the kitchen, don’t use the same knife to cut the vegetable and the meat. You must clean the knife first. Also don't use the same plate for raw food and cooked food.

You have to clean your food too like vegetables, fruits, etc before they are cooked or eaten. You must cook your food very well, don't cook it half cooked. Don't eat fruits like grape or strawberries because they only have very thin skin. Better to eat fruits with the thick skin. Also better don't eat the foods from outside because they maybe have been contaminated with the germs from the outside and can cause the infection. If you eat the foods from outside, make sure the foods are cooked well and check that the foods are new. Check the expiry date of the food too. Also don't keep the foods outside after they were cooked more than 30 minutes, better the cooked food are closed from outside after cooked. If you buy meat, don't mix the meat with the vegetable or fruit in refrigerator; also don't keep the meat more than 3 days. More than 3 days it's better to throw away the meat. If you buy the food in the packaging, after you open it, you must eat the food immediately, don't eat the food more than 30 minutes and also check the expiry date.

You should cook your drinking water before you drink the water. Don't keep the drinking water more than 24 hour, better it to be changed with the new one every day.

If you have the Hickman's line, you have to keep the cleanliness of your Hickman's line. Always have dressing and flushing every 3-7 days. Always keep your Hickman's line dressing dry and keep it with plastic if you are taking a bath. If your clothes are wet, you have to change your clothes immediately because the wet condition can support germs to grow up and cause the infection.

Also better to take a bath everyday because it can prevent the germs and dirt from outside enter your body, so it can prevent the infection. If you have the Hickman's line, always keep your Hickman's line with a plastic first. Wash your body with gentle soap to prevent irritation to your skin. You also can take a bath with warm water but not too hot to make you comfortable and prevent you from losing energy. But you must be careful when you are taking a bath and you better take a bath together with your caregivers, like parents, to help you taking a bath. if you don't feel well, you can postpone taking a bath until you feel better.

Also don't forget to clean your mouth everyday with pink brush / soft brush and gargle / salt water. It can help you to prevent your mouth from ulcer. Clean your teeth, gums, tongue, cheek, and lip with pink brush / soft brush and gargle / salt water. You have to clean your mouth for at least 3 times a day or after taking food and before sleeping. You also have to clean your mouth after you are vomiting.

If you have ulcer in your mouth, you have to clean your mouth or gargle with gargle / salt water often, approximately every 3 hours. Sometimes the ulcer is irritating you, but you must be patient to clean it, because if you let the ulcer growing up, the ulcer will increase and can cause the fever and infection. Clean the ulcer slowly with the pink brush / soft brush. If your platelets low, don't brush the ulcer with brush, because it can cause bleeding. It's enough to gargle your mouth with the gargle / salt water.

Tips 2: Take Care of Your Food

The second thing you have to take care is your food. Eat nutritious food so your recovery will be faster. Eat more vegetables and fruits because they have a lot of vitamins and minerals that your body needs for recovery. The vegetables and fruits also have high fiber that can help you to pass motion softly and prevent your buttocks from injury.

Don't eat the food with lot of MSG (Mono Sodium Glutamate), preservatives, coloring, and much sugar & trans fat. Also don't eat the outside food because the outside food has risk to be contaminated with the germs. If you want to eat the outside food, make sure the food is just cooked and cooked well. But it's better if you cook all the food you will eat by yourself because you can make sure the food is new, clean, and cooked well by yourself so you can prevent the infection from your food.

If you buy the packed food, don't forget to check the production date and expiry date of the food. Check also the composition of the food. If you find the composition of the food that you afraid cannot be eaten, you can ask the nurse first before you eat.

You are advised to drink more water, because as the BMT patient, you will get lots of medicine to eat. It's better to drink more water to throw away the residual of the medicine from your body. Drink more water also can prevent you from fever. Drink minimal 2 liters everyday is good for you. You can put the water in a big bottle than in a glass so you don't feel like you have drunk much water like as if you drink from the glass. But don't drink too much water in once time because it can cause you vomiting. Drink little by little and slowly but often.

I also drink barley water especially when I get fever. In my friends and my experiences, barley water can help to cure the fever. You can try at home too. First, you soak the barley bean in clean water, then you clean the barley bean, after that you boil the barley bean with approximately 2 glasses of water until it become 1 glass of barley water, approximately 10-15 minutes. I also drink red bean water and bit fruit water that are believed to increase the Hemoglobin and Red Blood Cells. How to make the red bean water and bit fruit water are same like barley water.

Sometimes you will lose your appetite to eat. You can have the snack like cookies, juices, etc to eat. You also can vary your food with the food you like to increase your appetite. Don't push yourself to eat the heavy food if you don't feel well, try to eat slowly first. Eat the small food and take your food little by little and slowly but often. If you like drink milk, you also can drink milk because milk have complete enough nutrient and can be replacement food if you cannot eat heavy food.

Also better don't eat the food like ice cream because ice cream is made from milk. The problem is because we don't know whether the milk is cooked well or no, so I think it's better to avoid the ice cream first to prevent the infection. Also better to eat plenty food like soup because it's easier to eat and you also can get plenty water from it.

Also don't share your food with the others, because your immune system is low and it's easier for germs, viruses, and bacteria from the others to infect you. Don't let the others to taste your food or your drink.

Tips 3: Keep Your Mind Healthy

It's also important to keep your mind healthy. If your mind healthy, your body will be healthy too and your recovery will be faster too.

As a BMT patient, sometimes, you will fell boring because you will spend a long time in the hospital. You can play games, cards, or bring photos, pillows, or anything to cure your longing to your home. Make your BMT room like your room.

Don't feel lonely, because you are not alone. You still have families and friends. Share everything you feel with them. Even you can make your doctors and your nurses who are treating you as your family.

Also always think positive. If you think positive, you will get the positive things too.

The most important thing is always be grateful to God, no matter what happens to you. Be grateful because until now, you are still given a live from God, you still have families and friends who love you dearly. You must be strong and healthy for them.

Also don't forget to always pray to God. Because with prayer to God, you will get strength to cope with all your processes. Don't be afraid because God always with us and God know all we need. God will never let us to face this trouble alone. Believe and give in all things to God and you will get peace in your heart.

Tips 4: Be Careful When Taking The Medicine

I think the most important think that we all must be aware of is that you must very be carefully when you take medicine, especially if you are a cancer patient, because all type of medicine for cancer patients is “Very Serious Medicine” and if you wrongly take the medicine, you must tell your doctor very soon to get advice. I must tell you this because this is the mistake that we all commonly do and can cause serious effects especially if you are a BMT patient.

I am sorry to say this, but all of us must consider this because it is the most common mistake that we do especially if you are a BMT patient, and it can cause a very serious problem especially for a BMT patient.

I hope my experience can give you little help to cope with the Bone Marrow Transplant process. And always believe that after Bone Marrow Transplant process, you will be healthy again and you can be together again with your family and your friends.

God Bless You

Christianto Perdana

Chris's handwriting^^

This is Chris's handwriting on his latest conditions.
Chris is now in the recovery process after the bone marrow transplant.
He is in high spirit, although he is suffering from Graft-versus-host disease (GVHD).

He wrote the message in Bahasa Indonesia, his native language.

In Bahasa, this is what he says:
Halo, apa kabar?
Chris sekarang di rumah sedang berobat jalan.
Chris ke dokter satu minggu sekali untuk check-up.
Chris sekarang lagi banyak makan obat karena ada virus dan GVHD.
Doakan ya semoga Chris cepat pulih dan sembuh ya.
Christianto Perdana

English translation of the message is as following:
Hello, how do you do?
Chris is now staying in the apartment as an outpatient.
Chris visits the doctor once a week for check-up.
Chris is currently taking a lot of medicines for suffering from virus and GVHD.
Please pray for Chris's recovery process and health.
Christianto Perdana