Solving the Puzzle

Solving the Puzzle in Boston


On Sunday 14th October after camp we took the train to Boston and checked in to where we were staying,Yawkey house which is a part of Boston’s children’s hospital its a bit like Ronald McDonald house and was great.

On Monday we didn’t have any hospital appointments so we went on a duck tour of Boston that some wonderful people we met in America on camp shouted us. The tour was very interesting and we learnt lots about the history of Boston. I got to drive the duck when it was on the river. Then in the afternoon we went to Quincy markets.

On Tuesday we had an appointment with Dr Agarwal the haematologist who had organised for us to see a group of doctors at Children’s Hospital Boston and also had helped with organising for us coming to America. We talked about different protocols for doing bone marrow transplants and about the possibility of me having one. He said that I would be a good candidate for one except for the fact that I don’t need one at the moment and may never need one. 80% of DC patients do need transplanting during there life.

After seeing Dr Agarwal we went to see a pulmonologist who said that My CT scan showed that I had developed pulmonary fibrosis now. That the bottom of my lungs were good but the top parts are getting worse. The doctor said that I need to see a pulmonologist regularly to monitor any progression and try to stop it. But nothing can be done about the fibrosis already there. He is going to write a letter of recommendations on what can be done to prevent further damage. He suggested a couple of things that Aaron was doing and also about getting a physio vest. I looked online and saw that the vests were around $10,000 NZ. But hopefully my medical insurance or the hospital will cover it for me.

On Wednesday after seeing a specialist Dr Agarwal also showed us around his lab were he does his research, which was fascinating to see. It was also great learning about some of the stuff he does there.

On Thursday we went to see a nephrologist who said that my kidneys are going ok at the moment with FSGS but that I need to keep an eye on them and see a nephrologist regularly. Also that it may be secondary FSGS caused by high blood pressure and not FSGS that caused my high blood pressure. Nelson hospital have sent my kidney biopsy plates to Harvard medical school from a biopsy done when I was 14 years old to see if they can get any clues to the reason for the kidney issues.
Then we went to an Orthopedic surgeon who said my hip X-rays look all good and that the surgery was a success and that I should be able to get back to normal now.

On Friday We went to see a neurologist who said the same thing as the NIH which is that they don’t think there is any thing going on neurologically with my hips and that I must have more physiotherapy for my walking and gait. If this doesn’t improve then they may have to look at the cyst on the spine but Drs will need to be keeping an eye on the cyst anyway.

At Boston they also said that my lungs are the most concerning problem at the moment. Which is good in some ways as I don’t show too many severe symptoms of DC.

Here is the link to some of the photos taken in Boston.

One Response to Boston

  1. Lynne says:

    Hi there, So glad to see that the trip has been really beneficial for you all. Great photos! When you get a chance Pam, txt me (easier for you to contact me). Meanwhile, thinking of you heaps! Lynne

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