I am not quite sure if this is the right place to post, and I wasn't planning to post this on the forums but I'd really like to hear what you guys have to say about this. I'd appreciate anything and help! <3 If possible, (This may be tl;dr) but I'd really like some questions regarding when to deal with friendships/relationships or just stuff that has to do with being emotional or anything.
I'm originally planning on printing this out once I am finished writing it, I'm not completely done yet as I still have a lot in mind to write about and I'm considering in adding a true or false section for this. I figured it'd really help out people who suffer with CF that have to be stuck in the hospital all the time, and with all those questions they may ask and such.
I plan on handing this to my Child Life Specialist next time I come back to the hospital for my Physical Therapy (which will be this Friday, if I have it done by then.) and I'll ask her if she could make copies and give it to CF patients at the hospital to see if that will help. I also plan on talking about my own life experiences with CF, too. So I'd really, really love opinions and thoughts on this + some questions I could add so I can answer!
What is Cystic Fibrosis? Cystic Fibrosis is a life-threatening disease that causes to build up mucus to your lungs, blocking its airway causing it harder to breathe, this disease may also affect its digestive system meaning it cannot digest its food normally unlike other healthy humans. Therefore enzymes are required to be taken at a prescribed amount in order to digest its food well when eating. This disease also, because of blocking the airways and making it harder for the patient to breathe. Nebulizer/Inhaler treatments are required in order to clear out the airways and block out the mucus, making it quite easier to breathe. The life expectancy of Cystic Fibrosis patients are between the ages of 35-37, but as medical services advance within time the life expectancy increases slowly. Unfortunately there is no cure for CF, as researches are working their hardest to discover a cure for this disease, there is still hope to succeed.
What are ways to treat Cystic Fibrosis? There are different ways to treat Cystic Fibrosis, one is that you *MUST* do your nebulizer/inhale treatments as instructed by your physician in order to maintain healthy and out of the hospital, preventing frequently hospital visits is bliss, and it will maintain good health in your body for quite awhile. Do the correct amount of times when doing your respiratory treatments, do your vest (Vest that is hooked up to a machine that goes on your chest to shake off the sticky mucus off your lungs), and most important of all - take your pills, go to the doctor's when needed and when discovering the symptoms of feeling ill - notify your physician as soon as possible!
Coping with Hospital Stays/Dealing with CF - Emotionally & Mentally
Is it normal to feel distress/isolation when dealing with hospital stays and such? I believe that it is completely normal to feel this way when you have to be stuck at the hospital, considering that they mostly tend to put you on an isolation room, and sometimes family may not come visit as much. From my personal experience, I was always in isolation and the only family member that would visit me is my mother - not as often, though. It is clearly understandable why my mother didn't visit as much as she wanted to. We do live pretty far away from the hospital AND considering that I also had brother who had CF that my mother would have to keep an eye on, so she could not come as often as much. Though she did know I was in good hands and visited me at any moment she'd can.
Back to the question, it is very normal to feel this way. It's very sad to feel this way, but do keep in mind that YOU are not the only one feeling this way! Just remember that you are not alone whatsoever because there are other patients just like you who has had to deal with such long hospital stays and they have felt that way - especially CFers like YOU!
About how long does it normally take for you to feel like yourself again? I'd have to say it really does depend on how well you're doing, how your lungs are functioning, how sick you were in the beginning. It all takes time, and nobody really knows when you'll be back to feeling like your ol' self!
What can you do when feeling sad because you have to put up with CF and its hospital stays? There are tons of things you could really do! As for me - I'd always have a chat with a nurse since they were always willing to talk to you if they had at least some free time on their hands, or I'd write out my feelings which really helps a ton ! I myself tend to write to what it seems like lyrics and it really explains part of how I feel, it's really a wonderful relief for me and it makes me feel better in the end. Here are some suggestions to distract yourself!
- Consult your CLS into giving you some ideas, brainstorm! You can come up with many ideas if you're into the arts. There's so many to choose from in what you can do when it comes to arts & crafts!
- If you're into electronics/video games, and have a game system of your own then there you go, you can freely entertain yourself and keep your mind busy by playing your video games with the DS/PSP or whatever else you may have!
- You can ALWAYS call up a friend to talk to! If you've got contact with a friend or family member I'm sure that they'd be willing to hear from you and what you have to say!
- Write out your feelings! That is something that I've done many times during my hospital stays and when I feel that way, I believe that it is very helpful to write out how you feel when feeling sorrow, because that way you'd be able to let out every single piece of your mind into a paper, and if you'd wish - you can keep it treasured for future reference ! I myself keep stuff I write just to see how things were back then and how I felt. I believe it makes me a stronger person!
- If you'd wish, you could always talk to a nurse who you are very fond of. I'm so sure that they'd really be able to have a chat with you especially with how you feel.
How can I tell my friends that I have to live with CF and being sick all the time? You could always tell them at any time and at any moment when you'd feel like it, I believe that it is very important to let a friend know what you go through, so they can understand you more and what you go through - that way they wouldn't have to question so much about your coughing, your absence, and why you have to take medicine & do respiratory treatments. But remember, it is your choice whether to tell them or not, but I recommend you letting them know so they can understand you a lot better. CF is a major part of your life so it's best to tell them!
About how long are hospital stays required? To my knowledge - for the average CFer, hospital stays vary between 2-3 weeks. It primarily depends on how sick you were when you first came in, and the most important is how well the antibiotics are treating the bacterias you may have, and how your Pulmonary Functions are doing, most of the time - antibiotic treatments DO last for 2-3 weeks, but if they switch it around you're in for another 2-3 weeks.
From my personal experience, my hospital stays were mostly around from 3 or up to even a month and a half. Like I have mentioned, it mostly depends on your PFT's, how well you may be feeling, and when you and your doctor decide if you are well enough to go home.
What happens if you get more sick than you normally are? There is a simple answer to a question like this:
Consult your physician, let them know how you may be feeling, and if possible ; you're most likely to end up being admitted.
If you get very sick "lung-wise", and your pulse ox may be low - as in between 90-93, then it will be inclined into requiring an oxygen canula, meaning that it will give you enough oxygen to help you breathe at least a little better, and with that - your pulse ox will be where it's supposed to be.
Do people tend to treat patients with CF differently than others? I sincerely hope that we will be treated the same way they treat others, but I am quite sure that the friends we have treat us the same.
There is always more than one person out there who treats us like others. I myself have friends who treat me the same way they treat their friends.
What happens if I get thoughts of wanting to die/give up in everything? First thing's first - you MUST consult your physician OR talk to a relative, close friend, nurse. There are times where CFers get these thoughts a lot, from my knowledge at least. But the support we get from people that love us always makes us stronger, that is something I believe in - and I hope you will too. It is always helpful to let someone know right away about this; not only for your safety, but for your health. No CFer should deserve to be thinking that way, and so therefore accept any helping hand!
What does it take to require a lung transplantation? When a Cystic Fibrosis patient begins to develop severe lung disease, the FEV1's around it's 40 or below, requiring oxygen around the clock and such - or just your lungs being typically severe; then the lung transplant team will appear in the picture once it has been mentioned between you and your own doctor. If you have decided to go for the transplant, then you will eventually meet up with the transplant team for evaluation - and you'd have to do many tests in order to see how well your heart, lungs, and kidneys function, the types of bacteria in the lungs, and, because of the serious health care implications of transplantation, the person’s psychological well being.
What are the risks of lung transplantation? Any kind of transplant has the same risks of a major operation - such as major bleeding, pneumonia, pulmonary edema; and also a chance of death to occur. But do KEEP in mind that it is only a mere chance of it happening, seeing as the surgeons and doctors we have are experts and highly experienced with lung transplants.
About how long does a lung transplantation take when the patient is being operated? The amount of time for lung transplants are between 6-8 hours. It takes a few hours to get prepped for the transplantation, depending on where the set of lungs reside in, the surgeons have to take flight in order to see if the lungs are alright, later they will harvest,clean out the lungs. Making them good as possible for the recipient.
How long do you have to wait before being put on the list/waiting on the list? The waiting time is unknown; more than hundreds of patients are awaiting for lung transplants in the U.S. Nearly every day there is a patient that is added to its list. Time varies. The transplant list is based on how sick you are, your blood type, size, age, etc. There are different kinds of patients that have currently been waiting for over a year or so.
From personal experience, I myself have waited 7 months to receive my set of lungs, my brother has waited 3-4 months, and a close friend has waited a year and a half after missing at least 3 transplant calls.
What is the difference you feel before & after a transplant? Before a lung transplant, you may have felt weak, difficulty in breathing, chest pain, not able to walk. It is a massive difference when comparing on how you felt before and after the transplant. You feel more alive, filled with air, able to run, walk and do anything you've always wanted to do! Take caution, though - first year of transplant is ALWAYS critical. Your immune system is completely shut down so it is recommended to stay away from sick people and crowded areas.
At first, you may discover a bit of pain on the chest after the surgery; but that is very normal. You've just got cut open very deep to the point where it will cut off your nerves, it takes time to heal - and the pain is all worth it!
What are the things you have to do to keep yourself in good shape after the transplant? It is HIGHLY recommended to follow as what your physician will instruct you to do - do NOT ever miss to take your pills. Always take them as said time and EVERY 12 hours. ALWAYS make sure you are taking the correct amount of milligrams when you are preparing to take your medication, as your medicines will often be changed around depending on how your medication levels will be. Make sure you are taking the correct amount, and the correct medication to, if you have any questions regarding on the medications ALWAYS call up your physician or even the transplant coordinator who are always willing to give a hand when it comes to your medications.
Exercising is definitely a must! Now that you've gotten new lungs it is time to work them out, work on your posture, regain some strength, use the muscles you have never been able to use before! You will be receiving Physical Therapy at least once or twice every week for a certain amount of time after you have received your lung transplant.
Another thing is that you must eat! Eating good and healthy foods with calories is definitely good for your health, you will end up losing some weight after you receive your transplant so eating will be very good for your health and your set of lungs! Don't worry, you will enjoy eating your foods unlike how it used to be before your transplant!
ALWAYS check your blood sugars before eating, and the rest check as instructed to. Always put insulin on before eating and if blood sugar is high, talk to your Diabetes Doctor to find out how much amount of insulin you will be needing per carbohydrates and how much you will be needing to correct yourself.
Friendship, Relationships and CF.
How do I make/keep/maintain friendships when I can't see/interact/play with them because I'm isolated? In your hospital stays, you cannot see your friends as much as you'd desire due to being isolated and trying to have a decent recovery without being interfered by bacterias coming from your friends. Bacterias come from anywhere and there are many different kinds of bacterias around this world, especially ones that your friends may have; all the bacteria on earth weigh more than the humans on earth and are far more numerous than us or even cockroaches, rats or other scourges. They may have been near a sick person and if they were to come visit you then those germs would be transferred to your sick body quickly, resulting your condition to worsen.
There are many ways to remain in contact with your friends while you're isolated. You can collect their numbers or give them your room's extension, you can use the hospital's laptop to keep in touch with friends via email or Instant Messaging.
How do I tell who my real friends are? This is a normal question for the average teenager AND for Cystics too, but when it comes to CF patients then it is completely different when comparing to a normal, healthy, teenager!
What I think is that the way you tell who your real friends are is if they are willing to accept what you have to live with, and how you have to limit some of your time with them due to your hospital trips, the times that you have to do your medication, etc. They also MUST respect your decisions for the sake of your health, and should not ever pressure you into doing drugs, alcohol and the MOST important - smoking.
I believe that the real friends will always be there for you through your hardships, are always able to talk to you no matter what, and most of all -- love you for who you really are, not for who you are WITH the sickness nor based on how sick you are and they just become friends with you out of pity ; no. Real friends are the ones who RESPECT, SUPPORT, and are always there to contact no matter what.
Thank you, I'd appreciate anything!
What I have to write about: - Coping with Death
- How to handle between relationships/friendships and CF altogether
- My own life experiences
- What to Expect
- Road to Recovery
- Staying Positive
- Accepting help/support from close friends and family
Last edited by Mai; 11-24-2008 at 10:45 PM.
Reason: added more