EternalHopeCF
New member
FAQ: HOW TO GET THE MOST OUT OF YOUR HOSPITAL STAY AND CF TUNEUPAfter staying in the hospital for at least a half a dozen times over the last 5 years for CF “tune-ups”, I am confident that I am finally getting a feel for the system and how to optimize my health, my cost and my frustration with hospital life. I firmly believe you should balance staying in the hospital with at home ivy treatments based on how self sufficient and compliant you are as a CF patient.
This FAQ post is meant for self-sufficient CF adults that want to optimize their hospital stay and ivy treatment. I hope this helps!Q1) HOW CAN I LOWER THE COST (AND FRUSTRATION) WITH HOSPITAL STAYS?- Before going into the hospital alert your CF doctors and nurses that you would like to USE YOUR OWN MEDICATIONS AND NEBULIZER CUPS. The hospital will charge you an arm and leg for everything and they will often times not deliver your medications when you need them (better to have a bedside supply).
You also need to ask your CF doctor/nurse “what’s the earliest I can leave the hospital?” To me, I feel 100 times less stressed doing my ivy treatments at home without coughing people surrounding me and nurses interrupting my sleep time every 2 hours. I truly believe I get better at a faster rate at home.
The minimum CF tune-up stay is typically 24-48 hours (this can save a ton of money and for me sleep is invaluable). A lot CF centers recommend 2 weeks (typical length of an ivy treatment), but this is a generic guideline that assumes you have no idea how to control your own CF and can only function in a controlled environment. If you are only staying in the hospital 1-2 days, then I assume you are comfortable with home ivy care and a home ivy nursing service – this can save a lot of money over a hospital stay and you don’t have to miss any work time (saving vacation time / sick days) or get awoken by nurses 24*7.
Also, before entering the hospital and regardless of your cultured lung bugs, tell your doctor and nurse that you want all individuals (yes even meal delivery and trash people!) who enter your room to WEAR APPROVED MASKS AND GOWNS to prevent cross contamination. They often times stick all CF patients on the same hospital wing regardless of which ones have MSSA or pseudomonas or other ailments – cross contamination is a real problem.Finally, before entering the hospital ask the CF doctors / nurse when your PICC line placement will take place (for the ivy catheter to run into your bloodstream). PICC line nurses are very busy and without an appointment you could be waiting hours after you are already admitted to get started on ivy antibiotics. Note: I find peripheral ivys itchy, restrictive, annoying and painful relative to a PICC line which stays in place without incident and is not bothersome other than some soreness the first 24 hours. After your hospital stay, always ask for an ITEMIZED BILL from your hospital stay; check it to make sure they did not bill you for services or medications you did not use.
Q2) WHAT SHOULD I BRING TO THE HOSPITAL?- Bring all of your own medications to the hospital (the pharmacist may need to review your meds to ensure they are all valid) – oral and nebulized medications. Note: most hospitals do not provide xopenex and instead prefer albuterol. - Bring snacks too; I prefer bottles of nuts as they are low in sugar, easily sealable and salty! - Bring your own nebulizer cups (I prefer PARI’s LC Sprint nebulizer cups which few hospitals provide)- Bring a sign and masking tape with you; tape this sign to the door that reads: “MUST WEAR MASK AND GOWN”; also bring your own personal bottle of hand sanitizer if your room doesn’t provide one
- Bring garbage bags to spit into or you could go all out like me; often times I bring a newspaper and spread it out on the floor to spit on. Horribly gross yes, - but it gives you a good surface area to spit on and you can easily see the color and thickness of your mucus progression; also newspaper is easily disposable.- Bring your own pajama bottoms / sweat pants / jogging shorts and warm comfortable socks / slippers; hospital gowns are ill fitting and remind me of a paper thin Snuggy
- Bring your laptop / ipad / favorite book / DVDs or you may be board out of your mind. Don't forget your adapters (phone and electronic equipment). Nothing worse than a dead battery. - Bring earplugs to help you sleep and a sleep mask
Q3) AS SOON AS I ARRIVE IN THE HOSPITAL WHAT DO I DO?You need to confirm 4 things right away: 1) tell your doctor and nurses that you are providing all of your own medications and nebulizer cups (if you choose this will save cost), 2) confirm that you are on the “high-calorie” CF diet so you can order 2-3X the food that normal people eat in the hospitals, 3) confirm that everyone entering your room will wear a mask and a gown (even if you don’t have pseudomonas). Make sure you are isolated from other patients at all times.4) confirm what time you will get your PICC line placed and what time your first ivy antibiotic will start; the sooner they start, the sooner you get back home
After making these confirmations: - Order you “high-calorie” meal as soon as possible, otherwise you may miss a meal or be stuck with whatever the nurses can scrounge up from the late night cafeteria. Also, to stay hydrated ask for several bottles of water with every meal and between meals.- My personal preference is don’t walk around the hospital, too much cross contamination. Only walk outside of your room when you are entering or leaving the hospital.
Q4) SHOULD I USE THE NEBULIZER CUPS THE HOSPITALPROVIDES ME WITH?Not if you’re looking to save cost. But, if the staff is providing PARI nebulizer cups, and you forget yours, they are probably sufficient. Most hospitals near me provide PARI LC Plus cups, these are adequate but not as efficient as PARI LC Sprint nebulizer cups I bring from home.
Q5) HOW DO I CLEAN MY NEBULIZER CUPS IN THE HOSPITAL?When I am at home, I sanitize my nebulizer cups between treatments with a baby bottle sanitizer via the microwave. While in the hospital, assuming your room doesn’t have a microwave (few do), ask the nurse for bottles of sterile water and plastic tub for washing your nebulizer cups. Lay your nebulizer cups out on a clean towel until they are bone dry as germs hate dry conditions.
Q6) BONUS: Once I get home from the hospital do you have any advice?Yes – get waterproof tape and saran wrap ($10 total) to wrap your PICC line in for showering
You have to push hard with your doctors for a 24 hour IVY antibiotic bag in tandem with an automated ivy pump. This will change your life I promise you. I prefer the Curlin Medical 4000 CRMS automated ivy pump. This pump plus the 24 hour IVY bag allows me to sleep through the night without needing to change the bag, also, I don’t need to depend on anti-gravity bags or a pole to ensure my ivy properly infuses.
That’s all I can think of for now.
IF YOU HAVE ADDITIONAL SUGGESTIONS before, during or after hospital CF tune-ups PLEASE DO LET ME KNOW!
Will
This FAQ post is meant for self-sufficient CF adults that want to optimize their hospital stay and ivy treatment. I hope this helps!Q1) HOW CAN I LOWER THE COST (AND FRUSTRATION) WITH HOSPITAL STAYS?- Before going into the hospital alert your CF doctors and nurses that you would like to USE YOUR OWN MEDICATIONS AND NEBULIZER CUPS. The hospital will charge you an arm and leg for everything and they will often times not deliver your medications when you need them (better to have a bedside supply).
You also need to ask your CF doctor/nurse “what’s the earliest I can leave the hospital?” To me, I feel 100 times less stressed doing my ivy treatments at home without coughing people surrounding me and nurses interrupting my sleep time every 2 hours. I truly believe I get better at a faster rate at home.
The minimum CF tune-up stay is typically 24-48 hours (this can save a ton of money and for me sleep is invaluable). A lot CF centers recommend 2 weeks (typical length of an ivy treatment), but this is a generic guideline that assumes you have no idea how to control your own CF and can only function in a controlled environment. If you are only staying in the hospital 1-2 days, then I assume you are comfortable with home ivy care and a home ivy nursing service – this can save a lot of money over a hospital stay and you don’t have to miss any work time (saving vacation time / sick days) or get awoken by nurses 24*7.
Also, before entering the hospital and regardless of your cultured lung bugs, tell your doctor and nurse that you want all individuals (yes even meal delivery and trash people!) who enter your room to WEAR APPROVED MASKS AND GOWNS to prevent cross contamination. They often times stick all CF patients on the same hospital wing regardless of which ones have MSSA or pseudomonas or other ailments – cross contamination is a real problem.Finally, before entering the hospital ask the CF doctors / nurse when your PICC line placement will take place (for the ivy catheter to run into your bloodstream). PICC line nurses are very busy and without an appointment you could be waiting hours after you are already admitted to get started on ivy antibiotics. Note: I find peripheral ivys itchy, restrictive, annoying and painful relative to a PICC line which stays in place without incident and is not bothersome other than some soreness the first 24 hours. After your hospital stay, always ask for an ITEMIZED BILL from your hospital stay; check it to make sure they did not bill you for services or medications you did not use.
Q2) WHAT SHOULD I BRING TO THE HOSPITAL?- Bring all of your own medications to the hospital (the pharmacist may need to review your meds to ensure they are all valid) – oral and nebulized medications. Note: most hospitals do not provide xopenex and instead prefer albuterol. - Bring snacks too; I prefer bottles of nuts as they are low in sugar, easily sealable and salty! - Bring your own nebulizer cups (I prefer PARI’s LC Sprint nebulizer cups which few hospitals provide)- Bring a sign and masking tape with you; tape this sign to the door that reads: “MUST WEAR MASK AND GOWN”; also bring your own personal bottle of hand sanitizer if your room doesn’t provide one
- Bring garbage bags to spit into or you could go all out like me; often times I bring a newspaper and spread it out on the floor to spit on. Horribly gross yes, - but it gives you a good surface area to spit on and you can easily see the color and thickness of your mucus progression; also newspaper is easily disposable.- Bring your own pajama bottoms / sweat pants / jogging shorts and warm comfortable socks / slippers; hospital gowns are ill fitting and remind me of a paper thin Snuggy
- Bring your laptop / ipad / favorite book / DVDs or you may be board out of your mind. Don't forget your adapters (phone and electronic equipment). Nothing worse than a dead battery. - Bring earplugs to help you sleep and a sleep mask
Q3) AS SOON AS I ARRIVE IN THE HOSPITAL WHAT DO I DO?You need to confirm 4 things right away: 1) tell your doctor and nurses that you are providing all of your own medications and nebulizer cups (if you choose this will save cost), 2) confirm that you are on the “high-calorie” CF diet so you can order 2-3X the food that normal people eat in the hospitals, 3) confirm that everyone entering your room will wear a mask and a gown (even if you don’t have pseudomonas). Make sure you are isolated from other patients at all times.4) confirm what time you will get your PICC line placed and what time your first ivy antibiotic will start; the sooner they start, the sooner you get back home
After making these confirmations: - Order you “high-calorie” meal as soon as possible, otherwise you may miss a meal or be stuck with whatever the nurses can scrounge up from the late night cafeteria. Also, to stay hydrated ask for several bottles of water with every meal and between meals.- My personal preference is don’t walk around the hospital, too much cross contamination. Only walk outside of your room when you are entering or leaving the hospital.
Q4) SHOULD I USE THE NEBULIZER CUPS THE HOSPITALPROVIDES ME WITH?Not if you’re looking to save cost. But, if the staff is providing PARI nebulizer cups, and you forget yours, they are probably sufficient. Most hospitals near me provide PARI LC Plus cups, these are adequate but not as efficient as PARI LC Sprint nebulizer cups I bring from home.
Q5) HOW DO I CLEAN MY NEBULIZER CUPS IN THE HOSPITAL?When I am at home, I sanitize my nebulizer cups between treatments with a baby bottle sanitizer via the microwave. While in the hospital, assuming your room doesn’t have a microwave (few do), ask the nurse for bottles of sterile water and plastic tub for washing your nebulizer cups. Lay your nebulizer cups out on a clean towel until they are bone dry as germs hate dry conditions.
Q6) BONUS: Once I get home from the hospital do you have any advice?Yes – get waterproof tape and saran wrap ($10 total) to wrap your PICC line in for showering
You have to push hard with your doctors for a 24 hour IVY antibiotic bag in tandem with an automated ivy pump. This will change your life I promise you. I prefer the Curlin Medical 4000 CRMS automated ivy pump. This pump plus the 24 hour IVY bag allows me to sleep through the night without needing to change the bag, also, I don’t need to depend on anti-gravity bags or a pole to ensure my ivy properly infuses.
That’s all I can think of for now.
IF YOU HAVE ADDITIONAL SUGGESTIONS before, during or after hospital CF tune-ups PLEASE DO LET ME KNOW!
Will