With New Lungs, Celli is Breathing Easier and Playing Ball

IPH

We have a 17 year old grandson (we are his guardians, he has lived with us since he was 3) who was diagnosed with Idiopathic Pulmonary Hemosiderosis when he was 7 years old. He just recieved a double lung transplant 3 1/2 months ago. He is having some problems though. Today he is having a broncoscopy to try and remove the mucus that is forming in his airways. Its very thick and sticky and they have tried 2 other times in the past 2 weeks. If they can't remove it today, they are going to try and lacer it out. Has anyone else had this problem after lung transplant or know of anyone else? Thank God there has been no sign or rejection.

Thanks

Kazelcfn

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Needing Help in Mississsippi

Lisa or Any That Can Help

My sister & her husband have a very/critical ill son "Matthew", who is 3 years old. Matt was born normal. 34 days after his birth our mother noticed something light red on his mouth, it was blood. He has a trac, a feeling tube, and is on oxygen. He's now three years old and does not talk or walk. He's still in pampers. The doctors are not for sure what caused his illness. There is some talk little or no research about babies being born to vets of the Iraq War & their serious disabilities and some parents having miscarries. Matthew is in the hospital now, on life support. I'm seeking any information available. Matthew did well most of this year and became ill about three weeks ago. I'm thinking they (sister & husband) need to seek help outside of Mississippi....Any comments, or suggestions? PLEASE HELP US:)

Holly of PA

It is wonderful to know your daughter is doing so good! Thank God for His blessings.

I'm very sorry to hear you had such an experience at CHOP.

I have never experienced any doctor with such a demeanor. Every doctor from ENT, General Surgery, and Cardiac Surgens have always come out to explain the process before and after. I was always met with a very informative and optimistic physican. No one ever said it was going to be easy but they always went out of their was to be supportive and to expalin treatment, procedures, and treatment plans. If they didn't have the answer they would find it even if it meant refering me to someone elce. I was also in service to the PACT team and they took care of Celli, me and my extended family. To me this hospital was amazing!!!

The discription you give of CHOP is something I have never experienced. My son was at deaths door and every hospital we had gone to told me my sons illness was terminal. CHOP told me Celli had a chance at life and God lead us there were my son could be given a second chance. He has his secnd chance and I'm forever greatful to God the doctors and nurses and staff at CHOP.

I have had experience with at least 100 families maybe more since we lived at the hospital and at the Ronald McDonald House for a year and I never had I heard a sistuation like yours. I'm very sorry that, that happen to you but very happy she is well. May God continue to bless your daughter and your family.

CHOP not so hot

My daughter was born with a congenital birth defect called Tracheal Stenosis and Complete Tracheal Rings. She was diagnosed at CHOP at 13 months of age. The surgeon did not take even one minute to speak with me after the procedure, but rather ran by and said he would call me later. He called me that night at 9:30 p.m.! His words were that my daughter was a "walking time bomb" and that she would not live to her second birthday unless they performed, within three months, a very risky procedure with a very high mortality rate and even higher permanent disability rate. When I inquired about getting her records to seek a second opinion, the doctor asked "For what?" I did in fact get a second opinion at Boston Childrens--where the doc was much mopre optimistic--and then learned of an amazing physician at Cincinnati Children--Dr. Robin Cotton. We went there for a third opinion in 2001 and flew out to Ohio every six months for four years and then once a year since 2005 for diagnostic bronchoscopies. Those doctors confirmed that my daughter had this condition, however, since she was not exhibiting any significant symptoms, they felt the risk of performing the surgery was too great. Not only did my daughter live past two years old, she is a very active 9 year old who dances, played soccer and softball and keeps up with my 10 year old nephew and his friends!!! Her airway has grown--CHOP said it was extremely unlikely that it would grow--and we were able to avoid having her undergo a procedure that would involve not only a reconstruction of her airway, but a full cardiac bypass as well. I thank God every day that I didn't continue my child's treatment at CHOP and would never take my child anywhere else but Cincinnati Childrens. My daughter has celebrated seven more birthdays and now has the prognosis of living well into her 80's and 90's like the average American!

Many Thank yous to all

It is so nice to hear all of the words of encouragement and love. In telling Marcellius "Celli" story I wanted it to help others going through similar circumstances. To show how God is ABLE. He has done so much for my family; so much for my son. I asked him for a Miracle and that is just what he gave me.I am so thankful also to the amazing doctors, nurses, and transplant team @ Children's Hosptial of Philadelphia. God lead us to you because of their amazing ablilities. I find it funny that their address is 30th street so I would say we are expecting a Miracle on 30th Street and we got one and I've been a witness to many other miracles at CHOP. Hope lives at CHOP!

I'm thankful that Celli's story can help and encourage others. He is such an amazing kid, I thank God everyday for picking me to be his mom.

Please feel free to keep up with our progress @ carepages.com celli's care page name is simply Celli.

Thank you all again for your kind word and if there is any parents out there who need to ask me any questions about my experience please do so as I feel this is what God would want me to do. We all go through things to help others.

Lung Transplant

My 8 year old daughter has lived with a very rare form of a lung disease since birth. She too is on oxyegen and several medicatons. She is also on the transplant list at St. Louis Childrens. While its very hard for parents, day by day think of what the future holds for our children with disease's such as this, its stories like yours that help ease the pain. Good luck and may God be with you.

LUNG TRANSPLANT SURVIVOR

My son also had a bilateral lung transplant at CHOP 15 months age and is doing great! We have all been given a second chance at a normal life thanks to the excellent doctors there! He is 14 years old and starting high school in September, which we never thought he woud live to do! No more oxygen tanks and tubing! His little brother and sister had never known him without tubing coming out of his nose their entire lives.

Congratulations, Celli! Have a happy, healthy life!

I love you all

Lisa going through this whole thing with you has made you all like family to me. I love all of you so much that words will never be able to describe! Marcellius has became almost like a little brother to me and I will always love him and be there for him as well as the rest of the family. I love you all and you know how to reach me if you ever need anything!!

Love Always,

Allison

Encouragement

I appreciated reading your story. It was such an encouragement. My wife and I have an infant in St. Louis Children's Hospital. She is seven weeks old and was approved for a lung transplant two days ago. We know we have a long road ahead of us, but we are excited with anticipation of her new, operable lungs. Keep the faith! God is good!