Solving the Puzzle

Solving the Puzzle in Boston

Lung Transplant Update

Here is a further update on what is happening with Tony’s health.

He is now settled into life back in Nelson. From the time he has moved back we think there has been an improvement in his day to day health.

Contact has been made with the lung transplant specialist in Sydney by Tony’s Wellington specialist at our request after NZ turned him down and we are now awaiting Dr Glanville’s  response ( in Sydney).

We have also heard from two other  DC Specialists in America who are in agreement that getting in touch with Dr Glanville in Sydney is the best plan.

There are two new drugs in America that seem to be helping pulmonary fibrosis that we heard about in the early stages of testing last time we were in America and also this last week there has been another paper published about a drug used for bone marrow failure they are now discovering is working in pulmonary fibrosis. This is all what we believe is being considered by all the Specialists working together to decide what to do next for Tony.

Unfortunately Tony’s weight loss is a big concern at the moment, so the drug that he had been started on in Wellington to try to help with chest infections has had to be stopped as the Doctors and us think this contributing to the weight loss. He has been started on a low dose antibiotic which he has used in the past to help prevent him getting chest infections in the future.

At this stage we are booked to go back to America to see Doctors at the NIH in Washington DC and Boston Children’s as well as going to the medical conference at Camp Sunshine, although this all may change depending if he goes to Sydney before then.

Thank you so much everyone who is supporting us in this journey. It is so much appreciated. Tony,myself and his parents (Pam and Paul) are very encouraged with all the support over the last few years.

 

.

 

Leave a Reply