Thankyou for sharing your experiances.
I don't expect post transplant to be pain free. I imagine it to be like three times as painful as having my port fitted, and fifty times harder to start to accept new things.
I know however that does get better, and that's the goal I will strive towards-that eventually I will feel better and things will be a thousand times better than what they were before transplant.
That to me is worth all the pain I think. I'll probably be feeling completely different just post transplant though, and just be sat there cursing phlebotomists cause they've stuck yet another needle in me. I'm not an easy one to please:P
Just a thought. You know when they do the big transplant op. Do they remove your port at the same time-or let you keep it for a bit longer until you're well again. It's a question that's not cropped into my mind till now. I'll be sad to lose my little friend.
Oh, and there's no worries about
me not listening to something the docs say. I listen well-to make sure they're not about
to screw up. It's almost become a talent lol.
Hope you can have staples removed soon, and that you heal well and quicker than quick!
Thanks again
Gem
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine, Slow-Sodium, Azithromycin, Cirpofloxacin, Septrin, Omeprazole, Tobi Ineb and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you: https://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.
Posted 6/24/2009 6:26 AM (GMT -7)
Hi,
My 16 year old son with Cystic Fibrosis is now waiting on a lung transplant!
Gemsi
Veteran Member
Joined : Feb 2007
Posts : 1050
Posted 6/25/2009 1:06 AM (GMT -7)
Hi there,
sorry to hear things have got bad enough for a transplant. Hope your son doesn't have to wait too long for one. I know there is a long long wait on transplants. Keep us posted on your journey if that's ok with you!
Hope things are ok
Gem x
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio.
Had a Port-a-cath fitted on chest wall since Nov 04
Help support the forums so we can support you: https://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.
Posted 6/25/2009 5:25 AM (GMT -7)
Hey there, this is aushtins-hockey-mom,
Sure, sounds great! His not so well and his life long jurney has been very bumpy but he gets through the day happier than ever even though he has this awful debilating disease holding him down. His been waiting a long time and hopfully he'll get his new lungs soon.
email me if you wish at james-morgan@live.ca !
Posted 1/11/2011 4:17 PM (GMT -7)
Hi everyone. I had a liver transplant 4-2-08. I was on the list for 6 months to the day! I worked hard to get myself into shape for this life saving operation. My transplant itself took alittle over 4 hours. I was back to work in 40 days. Recovery at first was painful, both in ICU, my stay in the hospital itself and the first couple of weeks at my caregivers home. The Norco helped me soooo much. The first three months after transplant, I had a hard time mentally...until I finally realized that I was one of the fortunate ones to be given a second chance at life and I am thankful. I am more patience, more appreciative, listen well to others, say Hi.. Thank You..excuse me..pardon me..EXTREMELY please to meet you..what can I do to help you..please allow me...and always with a smile. Life is good and so is the kindness of mankind! Keeping yourself in shape and a positive attitude is the key to pre and post transplant recovery!! I believe I will be recovering my intire live, but am ready for it and will welcome it with an open and understanding mind. That's all I can do. Thank you for reading my post. :)
Posted 1/27/2011 2:55 AM (GMT -7)
HI MY NAMES MELISSA I'M 25 AND HAVE CYSTIC FIBROSIS .....I JUST HAD A DOUBLE LUNG TRANSPLANT ITS BEEN A YEAR I GOT IT ON JAN.23 2010......AT PITTSBURGH HOSPITAL WITCH IS ONE OF THE BEST HOSPITALS FOR TRANSPLANT IT REALLY IS DR.BOMBA HE AND HIS TEAM ARE SO AWSOME ALSO DR.PILEWSKI .....MY STORY I WAS TAKEN TO PITTSBURGH PA. HOSPITAL FROM A LOCAL HOSPITAL HERE WHERE I'M FROM ELMIRA NY BECAUSE THE DOCTORS HAVE BEEN TALKING TO ME about TRANSPLANT BUT AS A YOUNG ADULT YOU DONT WANNA THINK about THAT YOU DON'T WANNA GO THROUGH THAT BUT I WAS IN THE LOCAL HOSPITAL LIKE I SAID VERY SICK FROM MY CYSTIC FIBROSIS COUGHING UP ALOT OF BLOOD WHICH HAD SCARED A NURSE AT THE LOCAL HOSPITAL SO THEY HAD PUT ME IN ICU AT THE LOCAL HOSPITAL BUT AS MY LUNGS GOT WORSE AND HARDER TO BREATH THE DOCTORS NEW SOMETHING MORE WAS GOING ON THAT MY LUNGS WERE NOT WORKING THE WAY THEY NEEDED TO...SO THAT NIGHT THEY DESIDED TO TAKE ME IN AMBULANCE TO PITTSBURGH HOSPITAL...IN THE AMBULANCE MY BREATHING COUNTIUNTED TO GET ALOT WORSE MY OXYGEN WAS ON 9 I COULD NOT GET ANY AIR...HARDLEY BREATHING BUT HANGING IN THERE FOR MY FAMILY....WE GOT TO PITTSBURGH 5 HOUR IN AMBULANCE THEY TOOK ME IN AND FOUND OUT I HAD RIPED A HOLE IN MY LUNG FROM COUGHIN SO MUCH THATS WHERE ALL THE BLOOD WAS COMING FROM THAT I HAD BEEN COUGHING AT THE LOCAL HOSPITAL SO THEY TOOK ME IN TO FIX THAT ...BUT I WAS NOT COMING BACK FROM IT MY LUNG WERE JUST TO FAR GONE SO THEY TOLD MY MOTHER PLEASE CALL ALL YOUR FAMILY GET THEM HERE SHES NOT GONNA MAKE IT THROUGH THE NIGHT......IN TEARS MY MOTHER COULD NOT BELIEVE IT HER BABY WAS LEAVING HER ....SO MY FAMILY GOT ALL TOGETHER AND PRAYED AND JUST HOPED THAT THINGS WOULD TURN AROUND .....THEN A DOCTOR FROM PITTSBURGH CAME IN AND SAID MRS.NEWELL (MY MOM) WE THINK WE CAN SAVE YOUR DAUGHTER I HAVE A MACHINE CALLED THE ECHMO MACHINE WHAT IT DOES IS IT PUTS AIR IN THE LUNGS AND FILTERS THE BLOOD JUST ENOUGH TO KEEP HER ALIVE TILL WE CAN GET HER NEW LUNGS AND IT PUTS HER AT THE TOP OF TRANSPLANT LIST ......SO MY MOTHER WAS SO HAPPY TO TRY IT AND HERE I AM WITH ONLY TOLD A NIGHT TO LIVE ITS BEEN A YEAR LATER ............TRANSPLANT IS GREAT I'M DOING REALLY GOOD SO FAR NO REJECTION NO REAL PROBLEMS ...I HAVE BEEN DOING FINE ...TRANSPLANT IS HARD AT FIRST GOING THROUGH ALL THAT BUT IF YOUR A FIGHTER YOU CAN DO IT DON'T GIVE UP ON LIFE DREAMS DO COME TRUE ....PEOPLE THAT ARE FACING TRANSPLANT PLEASE FIGHT IT IS YOUR SECOND CHANCE ....MY DONOR WAS A 38 YEAR OLD MALE THAT DIED FROM A BRIAN TUMER....THANK YOU FOR READING MY STORY HOPE THAT IT HELPED ....
Posted 1/27/2011 3:37 AM (GMT -7)
WHAT TO FACE DURING TRANSPLANT...... BEFORE AND DURING SURGERY YOUR SLEEPING FOR about 10-20 HOURS DEPENDING HOW IT ALL GOES ....THEN YOUR IN RECOVERY AND YOU SLEEP THROUGH MOST OF THAT TO ....WHEN YOU WAKE UP YOU'LL FEEL VERY TIRED AND WEAK ITS HARD TO EVEN MOVE TO SIT UP CAN'T STAND OR ANYTHING YET....YOU MAY NOTICE A CATH. FOR YOU TO PEE ..MY SURGERY WAS DONE UNDER MY BREAST THEY CALL THIS CLAM SHELL ITS BETTER THEN HOW THEY USE TO DO IT BY CUTTING ALL THE WAY DOWN THE CHEST...YOU MAY NOTICE TUBES COMING OUT THE SIDES OF YOU CHEST(CHEST TUBES) THIS IS FOR FLUID SO IT CAN DRAIN OUT AND DOES NOT HARM YOUR NEW LUNGS ...(THEY DO HURT :( BUT IS SOMETHING THAT IS VERY IMPORTANT FOR FLUID) YOUR NOT GONNA FEEL VERY HUNGRY FOR AWHILE BECAUSE YOUR BODY JUST WENT THROUGH ALOT.....YOUR GONNA BE FACING ALOT OF TEST BLOOD WORK, XRAYS,SWALLOWING TEST, MAYBE GETTING TUBES PLACED IF YOU HAVE ALOT OF EXTRA FLUID... YOUR GONNA BE GOING THROUGH ALOT ........AND NOT LIEING TO YOU IT IS PAINFUL VERY PAINFUL ....YOUR GONNA NEED ALOT OF FAMILY AND FRIENDS THERE TO PUSH YOU ALONG THE WAY BECAUSE IT IS HARD...AFTER THE FIRST COUPLE DAYS IF NO PROBLEMS YOU WILL NOTICE YOU FEEL ALITTLE STRONGER AND MAY BE ABLE TO WALK FOR SHORTER WALKS AND EAT BETTER ....THEN about A MONTH OR SO YOU CAN LEAVE NOW MOST HOSPITALS ARE GONNA WANNA KEEP YOU CLOSE BY FOR THE FIRST COUPLE MONTHS. SO MY FAMILY STAYED IN PITTSBURGH PA .....AT THE FAMILY HOUSE WHICH IS LIKE A BIG HOTAL FOR ALL THE PEOPLES FAMILYS TO GO THAT HAVE LOVE ONES GETTING TRANSPLANTS OR THAT ARE ON LIST FOR TRANSPLANT AND ARE about TO GET THERES......ITS A VERY NICE AND FRIENDLY PLACE AND ITS FOR PEOPLE TO GO AFTER TRANSPLANT FOR THE FIRST MONTH OR 2 SO THAT YOUR CLOSE TO THE HOSPITAL IN CASE ANY THING GOES WRONG..... YOU WILL HAVE MORE PILLS TO TAKE WELL IF YOU HAVE CYSTIC FIBROSIS YOUR USE TO PILLS ANYWAYS SO NO BIG DEAL ...BUT YOU WILL HAVE YOUR REJECTION MEDS THESE ARE SOOOO IMPORTANT TO TAKE AND DON'T CHANGE INLESS DOCTOR SAYS....THESE KEEP YOUR BODY FROM REJECTION THE NEW ORGAN!!!!!! ALL THE OTHER MEDS ARE VERY IMPORTANT ALSO LIKE VITMANS ,BLOOD PRUSURE,MUCINEX, ALOT OF OTHER ONES JUST MAKE SURE YOU TAKE ALL MEDS AS TOLD BY DOCTOR .......ALSO AFTER TRANSPLANT YOU MAY FACE DEPRESSION JUST HANG IN THERE ITS BECAUSE YOU BODY IS IN SHOCK FROM ALL THAT IT WENT THROGUH ....YOUR MEDS MAY MAKE YOU FEEL SICK TALK TO YOUR DOCTOR THEY CAN PLAN SOMETHING TO GIVE YOU TO MAKE THAT BETTER !!!!!!! YOUR STILL GONNA BE IN PAIN FOR A WHILE EVEN AFTER LEAVING THE HOSPITAL BUT ITS IMPORTANT TO KEEP WALKING EXCERSIZE DON'T JUST LAY AROUND ......(EVEN THOUGH YOU MAY GET TIRED JUST KEEP WORKING ON IT) IT WILL GET BETTER!!!!!!! FOR A WHILE YOUR SCARES ARE GONNA BE VERY SCORE JUST BE REALLY CAREFUL WITH THOSE AND THROUGHT THIS YOU WILL HAVE PAIN MEDS TO HELP (I DONT THINK NO ONE COULD FACE THIS WITH OUT THEM) TRANSPLANT IS HARD TO GO THROUGH BUT IT REALLY DOES GIVE YOU A SECOND CHANCE AT LIVE I MEAN I CAN RUN,RIDE A BIKE,WALK ALL THE LITTLE THINGS PEOPLE THAT ARE HEALTHY THINK WOW BIG DEAL.....WELL IT IS A BIG DEAL AND TRANSPLANT GAVE ME A CHANCE TO DO THAT ....SO I KNOW WHAT YOUR GOING THROUGH IT IS VERY SCAREY BUT REMEMBER YOUR SLEEPING THROUGH MOST OF IT ....AND THE OTHER THAT UR NOT SLEEPING JUST FIGHT BE STRONG ....BECUASE IT WILL GET BETTER ...BETTER TO BREATH, WALK WHATEVER YOU MAY WANNA DO WITH YOUR SECOND CHANCE WITH YOUR MIRACLE ........IF ANYONES WANTS TO TALK WITH ME EMAIL LOVEALWAYZ25@YAHOO.COM .......GOD BLESS
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