Hello, my name is Christianto Perdana. I am 17 years old. I am the Bone Marrow Transplant (BMT) patient. Before Bone Marrow Transplant, I suffered AML (Acute Myeloid Leukemia). As the 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 the BMT patient and need tips to cope with your condition.
Tips 1 : You Have To Keep Yourself And Your Environment Clean & Hygiene
As the BMT patient, I think the first thing you have to do is keep yourself and your environment clean & hygiene. Because usually the BMT patients' immunity is low and not strong enough to fight the infection. If you keep yourself and your environment clean & hygiene, it will prevent the germs, bacteria, virus, etc to infect you.
Every time you eat your food or medicine, always wash your hands with the soap. Also after you meet someone and after you are from outside. If you washing your hands with soap, your hand will 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 kitchen, don't use the same knife for 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 the outside, make sure the foods are cooked well and check that foods are new. Check the expired 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 packing, after you open it, you must eat the food immediately, don't eat the food more than 30 minutes and also check the expire 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 everyday.
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 dressing is wet, you have to change your dressing immediately because the wet condition can support germs to grow up and cause the infection.
Also better to taking a bath everyday because it can prevent the germs and dirt from the outside to your body so it can prevent the infection. If you have the Hickman's line, always keep your Hickman's line with the plastic first. Wash your body with gentle soap to prevent irritation to your skin. You also can taking a bath with the warm water but not to hot to make you comfortable and prevent you loss energy. But you must be careful when you are taking a bath and better you taking a bath together with your caregivers like parents to help you taking a bath. If you don't feel well, you can postpone taking the 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 minimal 3 times a day or after taking the food and before sleeping. You also have to clean your mouth after you 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 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 can make the bleeding. It's enough to gargle your mouth with the gargle / salt water.
Tips 2 : Take Care Your Food
The second thing you have to take care is your food. Eat the nutritious food so your recovery will 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 so can prevent your buttocks from injury.
Don't eat the food with lot of MSG (Mono Sodium Glutamate), preservatives, coloring, and much sugar & satiated fat. Also don't eat the outside food because the outside foods have risk to be contaminated with the germs from the outside. If you want to eat the outside food, make sure the food is new cooked and cooked well. But, it is 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 too to your food.
If you buy the packing food, don't forget to check the production date and expire date of the food. Check also the composition of the food. If you find 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 remainder 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 big bottle than in the glass so you don't feel have drink 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 go down 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 in approximately 2 glass water until become 1 glass barley water, approximately 10-15 minutes. I also drink red bean water and bit fruit water that believe 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 loss your appetite to eat. You can have the snack like cookies, juices, etc to eat. You also can make variation to 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 successor food if you can not 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 : Take Care Yourself
If your lips dry, try to use lip balm. Sometimes, lip balm can help to ease the dry lip. You also can use the oral balance / mouth moisturizer if you fell your mouth is dry can it also can help to ease the pain because dryness and ulcer. It’s better also to have a lot of drink to ease the dryness in the mouth and also water can help the body to erase the remainder of the medicine that you eat. It’s better have total 3 or 4 liters waters & fluids (can be soup, milk, juice, etc) to drink daily.
If your skin dry, you can use body lotion for dry skin or body lotion for repair the dry skin. Also it’s better to avoid the sunshine, especially in the afternoon that the sunshine is very hot because it can cause your skin dry and also sometimes can trigger Graft versus Host Disease (GVHD). If you have to go outside, it’s better to have shirt/clothes with long hand and pants or maybe jacket to protect you from sunshine. Also it’s better to have a hat to protect your head from sunshine too.
Also don’t forget to wear mask to protect you from the germs, bacteria, and virus from the air, especially when you go outside or meet someone/people. Sometimes, when you go outside or meet someone/people, you don’t know whether the people around you is sick or no and also your immune system is still very low, so it’s better to wear mask. But It’s better to avoid the place with many people first because sometimes germs, bacteria, and virus can still loss from the mask and also your system immune is still low and susceptible to infection/sickness.
It’s better to make a report to your doctor about your condition and your blood pressure, especially if you have Graft versus Host Disease. Sometimes, the medicine that doctor gives to you can increase your blood pressure and also sometimes have side effects. Also try to answer the question that your doctor gives to you clearly. By make a report about your condition and your blood pressure and answer to the question that your doctor gives to you clearly, you can help doctor to understand your condition better and can make the right decision.
Also It’s better to have more vegetable and fruit to eat, because It is have vitamins, minerals, and the others things that’s the body need for recovery. Also It’s high in fiber so can absorb the remainder of the medicine that you eaten.
Tips 4 : 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 the BMT patient, sometimes, you will fell boring because you will have long time in the hospital. You can play games, cards, or bring photos, pillows, or everything to disappear your longing to your home. Make your BMT room like your room.
Don't feel alone, 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 maintain 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 the God, no matter what happens to you. Be grateful because until now, you are still given live from the God, you still have families and friends who very love you. You must be strong and healthy for them.
Also don't forget always pray to the God. Because with pray to the God, you will get strength to cope with all your processes. Don't be afraid because God always with us and God know what all we need. God will never let us to face this trouble alone. Believe and give in all things to the God and you will get peaceful in your heart.
Tips 5 : Be Careful If You Take The Medicine !!!
I think the most important think that we all must conscious is you must very be carefully when you take medicine especially if you a cancer patient because all type of medicine for cancer patient is “Very Serious Medicine” and if you wrong to take the medicine, you must tell your doctor very soon to get advise. I must tell you this because this is the mistake that we all common do and can appear serious effect especially if you are a BMT patient.
I am sorry to say this, but all of we must consider because this is the most common mistake that we common do especially if you are a BMT patient because it can appear a very serious problem especially for a BMT patient, so I think it's better to get your doctor know about your complete condition immediately so you can get help very soon.
I hope my experience can give you little help to cope with Bone Marrow Transplant process. And always belief, after Bone Marrow Transplant process, you will be healthy again and you can be together again with your family and your friends. Thank you very much.
Tips 1 : You Have To Keep Yourself And Your Environment Clean & Hygiene
As the BMT patient, I think the first thing you have to do is keep yourself and your environment clean & hygiene. Because usually the BMT patients' immunity is low and not strong enough to fight the infection. If you keep yourself and your environment clean & hygiene, it will prevent the germs, bacteria, virus, etc to infect you.
Every time you eat your food or medicine, always wash your hands with the soap. Also after you meet someone and after you are from outside. If you washing your hands with soap, your hand will 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 kitchen, don't use the same knife for 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 the outside, make sure the foods are cooked well and check that foods are new. Check the expired 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 packing, after you open it, you must eat the food immediately, don't eat the food more than 30 minutes and also check the expire 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 everyday.
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 dressing is wet, you have to change your dressing immediately because the wet condition can support germs to grow up and cause the infection.
Also better to taking a bath everyday because it can prevent the germs and dirt from the outside to your body so it can prevent the infection. If you have the Hickman's line, always keep your Hickman's line with the plastic first. Wash your body with gentle soap to prevent irritation to your skin. You also can taking a bath with the warm water but not to hot to make you comfortable and prevent you loss energy. But you must be careful when you are taking a bath and better you taking a bath together with your caregivers like parents to help you taking a bath. If you don't feel well, you can postpone taking the 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 minimal 3 times a day or after taking the food and before sleeping. You also have to clean your mouth after you 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 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 can make the bleeding. It's enough to gargle your mouth with the gargle / salt water.
Tips 2 : Take Care Your Food
The second thing you have to take care is your food. Eat the nutritious food so your recovery will 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 so can prevent your buttocks from injury.
Don't eat the food with lot of MSG (Mono Sodium Glutamate), preservatives, coloring, and much sugar & satiated fat. Also don't eat the outside food because the outside foods have risk to be contaminated with the germs from the outside. If you want to eat the outside food, make sure the food is new cooked and cooked well. But, it is 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 too to your food.
If you buy the packing food, don't forget to check the production date and expire date of the food. Check also the composition of the food. If you find 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 remainder 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 big bottle than in the glass so you don't feel have drink 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 go down 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 in approximately 2 glass water until become 1 glass barley water, approximately 10-15 minutes. I also drink red bean water and bit fruit water that believe 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 loss your appetite to eat. You can have the snack like cookies, juices, etc to eat. You also can make variation to 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 successor food if you can not 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 : Take Care Yourself
If your lips dry, try to use lip balm. Sometimes, lip balm can help to ease the dry lip. You also can use the oral balance / mouth moisturizer if you fell your mouth is dry can it also can help to ease the pain because dryness and ulcer. It’s better also to have a lot of drink to ease the dryness in the mouth and also water can help the body to erase the remainder of the medicine that you eat. It’s better have total 3 or 4 liters waters & fluids (can be soup, milk, juice, etc) to drink daily.
If your skin dry, you can use body lotion for dry skin or body lotion for repair the dry skin. Also it’s better to avoid the sunshine, especially in the afternoon that the sunshine is very hot because it can cause your skin dry and also sometimes can trigger Graft versus Host Disease (GVHD). If you have to go outside, it’s better to have shirt/clothes with long hand and pants or maybe jacket to protect you from sunshine. Also it’s better to have a hat to protect your head from sunshine too.
Also don’t forget to wear mask to protect you from the germs, bacteria, and virus from the air, especially when you go outside or meet someone/people. Sometimes, when you go outside or meet someone/people, you don’t know whether the people around you is sick or no and also your immune system is still very low, so it’s better to wear mask. But It’s better to avoid the place with many people first because sometimes germs, bacteria, and virus can still loss from the mask and also your system immune is still low and susceptible to infection/sickness.
It’s better to make a report to your doctor about your condition and your blood pressure, especially if you have Graft versus Host Disease. Sometimes, the medicine that doctor gives to you can increase your blood pressure and also sometimes have side effects. Also try to answer the question that your doctor gives to you clearly. By make a report about your condition and your blood pressure and answer to the question that your doctor gives to you clearly, you can help doctor to understand your condition better and can make the right decision.
Also It’s better to have more vegetable and fruit to eat, because It is have vitamins, minerals, and the others things that’s the body need for recovery. Also It’s high in fiber so can absorb the remainder of the medicine that you eaten.
Tips 4 : 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 the BMT patient, sometimes, you will fell boring because you will have long time in the hospital. You can play games, cards, or bring photos, pillows, or everything to disappear your longing to your home. Make your BMT room like your room.
Don't feel alone, 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 maintain 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 the God, no matter what happens to you. Be grateful because until now, you are still given live from the God, you still have families and friends who very love you. You must be strong and healthy for them.
Also don't forget always pray to the God. Because with pray to the God, you will get strength to cope with all your processes. Don't be afraid because God always with us and God know what all we need. God will never let us to face this trouble alone. Believe and give in all things to the God and you will get peaceful in your heart.
Tips 5 : Be Careful If You Take The Medicine !!!
I think the most important think that we all must conscious is you must very be carefully when you take medicine especially if you a cancer patient because all type of medicine for cancer patient is “Very Serious Medicine” and if you wrong to take the medicine, you must tell your doctor very soon to get advise. I must tell you this because this is the mistake that we all common do and can appear serious effect especially if you are a BMT patient.
I am sorry to say this, but all of we must consider because this is the most common mistake that we common do especially if you are a BMT patient because it can appear a very serious problem especially for a BMT patient, so I think it's better to get your doctor know about your complete condition immediately so you can get help very soon.
I hope my experience can give you little help to cope with Bone Marrow Transplant process. And always belief, after Bone Marrow Transplant process, you will be healthy again and you can be together again with your family and your friends. Thank you very much.
