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Posted By : mbandjh - 1/9/2011 7:08 PM
My grandson was diagnosed with CF at 3 weeks old, he is now 18 years old and graduated from High School last year, he has lived with myself and his grand father most of his life. Now that he is older we are having a terrible time getting him to do his tresatments, meds ect;. John Hopkins wanted to place him on the lung transplant list and he refused, I am so worried and frustated I could just scream!!!!!!!!
I believ I need to find a chat room for him so he can have some one he can chat with about this terrible disease. He is always on the computer chating with his friends. I NEED SOME TYPE OF GUIDANCE PLEASE
mbandjh

Posted By : lovealways25 - 1/27/2011 5:18 AM
HI MY NAMES MELISSA I'M 25 AND JUST HAD A DOUBLE LUNG TRANSPLANT JAN 23 2010 DUE TO CYSTIC FIBROSIS....I UNDERSTAND WHY HE MAY SAY HE DON'T WANT THIS HE MAY BE SCARED AND NOT WANNA SHOW YOU THAT HE IS SCARED OR MAY BE SCARED THAT HE DO ALL THIS AND HAVE PROBLEMS AND STILL BE SICK OR DIE...BECAUSE IT IS SOOO SCAREY WHEN YOUR THE PERSON FACING THIS YOU CANT EXPLAIN TO PEOPLE HOW YOU FEEL BECAUSE THERE ALL LIKE YES DO IT DO IT!!!!!!!!! ITS GONNA SAVE UR LIFE BUT REMEMBER ITS HARDER THEN IT SEEMS ....IT IS VERY SCAREY ...JUST SIT HIM DOWN WITH ALL HIS FAMILY AND LOVE ONES AROUND BECAUSE HE IS GONNA NEED ALOT OF LOVE AND EXPLAIN TO HIM PLEASE DO THIS I UNDERSTAND YOU MAY BE SCARED BUT THERE ARE SO MANY PEOPLE THAT ARE DOING GREAT AFTER TRANSPLANT AND LIVE ALOT LONGER ....AND EVERY BODYS STORIES ARE DIFFRENT JUST BECAUSE SOMEONE ELSE HAD TROUBLE WITH TRANSPLANT DONT MEAN YOUR GOING TO ...EVERYONES BODYS HEAL DIFFRENT ....AND WHEN ITS OVER YOU'LL BE FEELING ALOT BETTER NO MORE SHORTNESS OF BREATH, COUGHING BLOOD NOT ALL THOSE HOSPITAL STAYS .....ITS GREAT TO BE ABLE TO FEEL GOOD.....ALSO EXPLAIN TO HIM THROUGH MOST OF IT HE WILL BE ASLEEP NOT EVEN KNOWING WHATS GOING ON .....AND WHEN HE IS AWAKE IT IS A BATTLE I'M NOT GONNA LIE BUT IF YOUR A FIGHTER YOU'LL MAKE IT ....I MEAN EXPLAIN TO HIM THAT YOUR THERE FOR HIM EVERY STEP OF THE WAY AND YOU DONT WANNA LOSE HIM BECAUSE THATS WHAT WILL HAPPEN IF REFUSED TRANSPLANT .....I LOST MY COUSIN SHE WAS 24 BECAUSE SHE COULD NOT MAKE IT TO TRANSPLANT HER LUNGS JUST DID NOT HOLD UP .......THATS WHAT REALLLY MADE ME open MY EYES AND SAY YOU BETTER DO THIS INLESS YOU WANNA DIE .......MAYBE YOU COULD TALK TO SOME DOCTORS EXPLAIN TO THEM TELL HIM HOW MUCH THIS MEANS SOMETIMES HEARING IT FROM A DOCTOR IT HITS YOU MORE .....AND THEY COULD EXPLAIN SURGERY TO HIM .....I HAD MY TRANSPLANT AT PITTSBURGH PA. DR.BOMA AND HE AND HIS TEAM WERE GREAT ......I WOULD BE ALWAYS WILLING TO TALK WITH HIM THROUGH ANYTHING ...I CAN EXPLAIN THE WHOLE SURGERY OF WHAT I WASN'T SLEEP FOR ....I CAN HELP HIM IF HE IS SCARED CUZ I KNOW HOW THAT FEELS .....EMAIL ME DOLLOP51@YAHOO.COM .......AND AS FOR NOW TELL HIM IF HE DONT DO HIS MEDS ITS GONNA LEAD TO TRANSPLANT OR DEATH SOONER ....BELIEVE ME I KNOW I WAS ONE OF THOSE KIDS AWWW I DONT NEED ALL THOSE MEDS AND LOOK WERE IT TOOK ME TRANSPLANT AGE 24 ...........SO STRESS TO HIM ITS SO IMPORTANT HAVE HIS DOCTOR YELL AT HIM ANYTHING TO GET HIM TO DO THEM OR YOUR GONNA END UP TRANSPLANT MUCH SOONER .........................

Posted By : andrdyb - 1/29/2011 10:03 AM
My daughter with CF is 21 so I can relate a little bit to what you're saying. I can't imagine the frustration you're feeling at this point and there are no easy answers. It is very typical to see a huge decline in self care with adolescents for too many reasons to detail here. Suffice it to say, he's in a firestorm of developmental stuff that teens normally face, complicated by mortality staring him in the face, PLUS whatever else is going on in his life socially, spiritually, mental health-wise, etc. It is a VERY heavy load to bear.

I would think of someone in his life that he loves and respects - besides you and your husband. Share with them what is going on and ask if they would be willing to talk to him. That can happen in a number of ways - that person alone with him, that person joined with some or all of his loved ones, that person with him and his doctor or with you all and his doctor. Everyone is different and you'll have to consider what might work best with his personality as far as what will really move him. The biggest thing is to really LISTEN to what he has to say. Too many times, we are so worried about losing them that we jump in and discount all the reasons they don't want to bother with treatments, etc. It was really, really hard for me, but I've learned to be somewhat better at putting myself in her shoes and trying to understand how difficult just daily life is for her with all that she has to do. I find that when I do that, when I listen and sympathize and don't add the "but...." - she is much more open when at another time, I sit down and say, OK - we've got a problem here, I know (insert all that she's told me about her feelings here) and so how can I help you make this doable? What ideas do you have? That seems to work pretty well. I also try to remember that the quality of my relationship is most important because time is so precious. Do I want to spend that limited time fighting with her all the time or do I want to try to understand what she is feeling and thinking? It's the hardest thing I've ever had to do, I don't do it all that well I don't think, but I try to remember it as my goal and it has helped. I pray that your grandson is able to feel and know how much you all love him no matter what.

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