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.

 

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Lung Transplant

It is time to update what is happening with Tony’s health. Unfortunately the week prior to Easter Tony ended up in hospital with fluid on his lung and couldn’t move to Nelson as he had to have more tests. He had a CT scan, a lung biopsy and then had to wait for clearance from the doctors to move home.

The Pulmonologist has confirmed that Tony’s  lungs have deteriorated to the point of needing a lung transplant now. Unfortunately Auckland hospital where NZ lung transplants are done have turned Tony down for a transplant with all his complications. The Pulmonologist has agreed to get in touch with a lung transplant specialist in Sydney. We are not sure if this will be reciprocal health care at this stage, but the two specialists will be working together to come up with a plan for Tony’s future. Also at this stage we are not sure if this will mean Tony will be able to have a lung transplant in Sydney.

Start of 2016

There are a few things happening this year and some changes.

One of the changes for this year is that Vanessa and I are moving back to Nelson from Wellington. This is due to the fact that the weather and climate up here in Wellington seems to be affecting my health. I am hoping the weather is playing a part in my increased trips to hospital with chest infections and once back in Nelson’s climate the chest infections will not be as frequent again. There is no guarantee this will be the case, but it is a high possibility. I am still staying under my lung specialist here in Wellington which is great and will be attending my 3 – 6 monthly visits in Wellington. I have started the pulmonary rehab again as this was recommended by my lung specialist and the physio when I was in hospital couple of weeks ago.

The last two and a half years living in Wellington have been great. We have made some great friends and enjoyed the big city life. I have been fortunate enough to able to keep my job with Weta Digital when I return to Nelson, which is fantastic for me. I will be working remotely and travel up to Wellington once every month or two.

We are looking at travelling back to America again this year, as it is coming up on two years since we were last there. The dates for the Medical Conference at Camp Sunshine have been confirmed for the 14th to the 18th of September 2016. We will be getting in touch with the Boston Children’s Hospital and the National Institute of Health in Washington DC about organising times to visit them around the camp. As the money fund raised 4 years ago has mainly been spent on travel, accommodation and medical expenses for myself and one support person, there is enough left for this year’s trip to America. 

HEALTH REPORT END OF 2015

Hi everyone

I know it has been a while again since my last post.

I have had a bit of a rough winter health wise.

The pulmonary rehab which I had just started in my last post went really well. Over the 8 weeks I got a lot fitter and learnt some new techniques for managing my lungs. At the classes they have around 12 different stations that you rotate around doing different exercises. Some of the exercises are a treadmill, exercycle, stairs, leg exercises and arm weights. When I first started there I was walking on the treadmill and then by the end I was jogging/running on the treadmill.

During my last week or two at pulmonary rehab I developed pain in my lower right rib area. It seemed to get a bit worse in the weeks after I finished at rehab and my breathing changed. So I went to the Dr and she sent me up to the hospital to get a chest x-ray. They found that I had a pneumothorax which is a collapsed lung. I was admitted to hospital for a few days and had to change my physio regime and stop doing my acapella as it puts pressure on my lungs. After a few weeks the pneumothorax had resolved at my follow up appointment. In the following month after that because of having to change my physio routine I then wound up with a chest infection which put me back in hospital for about a week.

Towards the end of 2015 I noticed that I was finding it hard to breathe and had a follow up check up with my lung specialist. I did a lung function test and they said I needed to admit myself back into hospital as I had another chest infection. Upon going back in the Dr did an x-ray which showed that the pneumothorax had reoccurred. They decided to limit my acapella slightly but not stop it as we did last time as I also had a chest infection too. With iv antibiotics the chest infection was clearing up and I got sent home with a dose of oral antibiotics.

About a week after coming out of hospital I got a really dizzy head and my vision got blurry. I also was finding it hard to breath. Vanessa called a ambulance which arrived and off to hospital again where they did a few tests. The pneumothorax was back again, I can’t fly anywhere until it is completely healed.

In November the Pulmonary team decided to start me on this new antibiotic three times a week as I have had a hard year with my chest and getting infections this year. This drug seems to be going well, I have so much more energy. All my other numerous medical tests for DC this year have had positive results so i tis just my lungs that are a concern at this stage.

I also have been referred to Auckland hospital about getting a double lung transplant in the future. The pulmonary team in Wellington are going to contact a rare disease specialist in Sydney who just happens to be the specialist recommended by our Dr at Harvard Medical Centre in Boston. This specialist Dr Allan Glanville, is also on the DCO Pacific board we have started up on this side of the world.

Needless to say we had cancel our flights for Christmas, home to Nelson. We did manage to take some extra days off work and take the ferry to come home to Nelson.

I am hoping this pneumothorax will resolve itself once and for all and that I can still fly back to Boston later this year.

Tony

Trash and Treasure

Next Saturday the 3rd of October the Soroptimist International of Nelson are hosting a Monster Trash n Treasure fundraiser for Community Groups.

Solving the puzzle in Boston has combined stand with Dyskeratosis Congenita Outreach Pacific.
This year we have some very special items from Peter Jacksons Weta Workshops, including signed figurines and a sketch book signed by Alan Lee, these were given to Tony Bayard to raise funds for “Solving the puzzle in Boston”.All funding from the Weta items will go to Solving the puzzle in Boston.

There will be other items on this stall that the money will go towards Dyskreatosis Congenita Outreach Pacific. This is a group that has been set up with Drs in Australia and America on the very rare condition that has now been diagnosed in Nelson families.

There will be preloved books, clothes, toys & white elephant as well as plants, raffles, home baking, preserves, fruit & vegetables.

You won’t want to miss out……..Something for everyone !

Entry: Gold coin donation (children under 10

Trash and Treasure is held on October 3 from 9am – 1pm at
Stoke Memorial Hall
548 Main Road
Stoke
Nelson

Some of the items are listed below.

THE LORD OF THE RINGS : ORTHANC – BLACK TOWER OF ISENGARD

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The “Lord of the Rings” Sketchbook: Portfolio
This book is signed by Alan Lee
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The Lord of the Rings
All three books signed by Alan Lee

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The Hobbit – Illustrated
This book is signed by Alan Lee
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Gollum

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Health Report, Start of 2015

Hi everyone

I know it has been a while since my last post when I was in America.

After coming back from America I had a lung clinic which I went to where they did a sprio reading, took my oxygen sats and looked at the medical notes from America. They weren’t very happy with the results from the sprio reading and my oxygen sats and the Dr said that he wanted to admit  me to hospital. They admitted me to hospital the next week gave me IV antibiotics, did some tests and kept an eye on me and my progress. I went in on the Tuesday in November and got out on the Sunday so nearly a week in there. They did another sprio reading on the Thursday  while I was in there, which showed a great improvement and was the best one I have done in Wellington. They also did a overnight oxygen monitoring which they said was normal (well normal for someone like me), which was great to hear.

I’ve saw a couple of different physio’s while I was in there and they said I was doing all the right things and had a good technique on my home physio care. They also referred me for starting pulmonary rehab in 2015, that I have started this week.
It is for 1 and a half  hours  twice a week for 8 weeks. Last Tuesday I went to the pulmonary rehab pre-assessment in which  I did a 6 minute walk test where my oxygen sats dropped a we bit but then they stabilized which was good and  it showed that I was able to do the exercise plan okay.

I received another appointment to see the lung clinic again this year for a sprio reading and have a x-ray. I went to this appointment where I had a chest x-ray,did another 6 minute walk test and a sprio reading. I saw the lung specialist Dr about my results and he said my sprio reading and oxygen levels have stayed up and that my chest x-ray shows no worsening, if anything the inflammation might be slightly better. This was great news and he is happy with my progress, so he is going to see me again in 6 months. He said that I might just have to have a blast of IV antibiotics every so often to have a good clean out.

Tony

America 2014 update

Sorry for taking so long to get a post up. We have had a great and very busy time so far. We also have had some news I’ve had to come to grips with, and has been hard to write about.

We had a couple of days in San Francisco, resting with a little bit of sightseeing. We then flew overnight to Boston, where a great friend, Barbara, who we met at camp last time, who is volunteer, picked us up and drove us to Maine, to the medical conference and camp.
We had a great time at camp sunshine that week. We have learnt so much more from the doctors at this conference about DC, and the progress they have made in research since the last time we were here.
Also met lots more families and made many more connections. This time there was more families from around the world as well as us from N.Z. We now know Americans ,Canadians , Australians and families from Denmark, Netherlands and Ireland. It is such a blessing meeting all these families in similar situations. There we discovered that the FDA has approved two new drugs for Pulmonary Fibrosis.

Our next stop was the NIH in Washington DC. This time we had 2 full on days from 5am starts to 7pm in the evenings. More very thorough tests, including blood tests, mri’s, bone marrow biopsy, ct scans, ultrasounds and seen by a lot of specialists.
Unfortunately I did not have such a good outcome with my lung investigations. We are hoping there is some sort of infection causing this. My oxygen saturations dropped to 88 % on the walking test, suggesting that I really need oxygen when walking around if the Dr’s don’t work out what is causing this.
I started antibiotics and Drs have added a different medicine for the lungs. We had to change going to NY on our morning train, as they wanted to do more tests for my breathing.

We then took the later train to New York City for a couple of days. We had the wonderful opportunity to spend time with the Cornelius family we met through DCO. We went to Intrepid, The Lion King and then to Jersey Boys with Skip and Nancy. We had great time with them.

We then had to travel to Boston a day earlier to see more specialists at Boston Children’s hospital, where they gave their opinions on my results from the NIH. They also agreed that I needed to be on oxygen when I exercised. They showed us how much the lungs have deteriorated on the ct scan over the last two years. If I feel at all like I need oxygen on the plane I must ask for it. I also have to get an oxygen metre to measure my sats regularly so I know when they have dropped below 90. Also I will need to go into hospital when we get home and have sleep measured oxygen sats so they can make sure it’s not dropping while sleeping and affecting the heart. Aaron had this in Starship a few years ago after they worried about six minute walk tests with him. His sleeping oxygen levels were fine, so hopefully mine will be the same.

During this time we also stayed with Barbara again, and got to do some lovely sightseeing and shopping. I also got a oxygen sats meter and used it when we walked along the beach, my oxygen levels dropped to 89% for a short time but then rose to around 93% for most of the walk.

America Trip 2014

Hi everyone

We have the opportunity to go back to America again this year, for the two yearly medical check up that the doctors over there have advised. This is made possible from all of your donations last time, as we only spent the funding money on the medical side of the trip. We have enough funds left over for mine and Vanessa’s travel and medical costs etc for this trip. Also there may enough for one more medical trip or / and more medical expenses.

Mum and dad wanted to go to the medical conference in Maine again this time. We also thought it would be good for us all to go to support each other for the whole trip. They are covering all the costs for their trip, themselves.

We go on the 10th of October for 3 and a half weeks. We are flying into San Francisco, then onto Maine for the Camp Sunshine medical conference. From there we go to Washington DC and the NIH Hospital. Next we go up through New York to Boston and Boston Children’s Hospital. Lastly we go back to the other coast to Los Angeles and from there fly back to New Zealand.

The Weta items donated two years ago are up for grabs. These will be posted up on TradeMe, so feel free to take a look and bid if you’d like. If these items do not reach the reserve price, they are going to be raffled.

The blog will be added to, while we are in America, like last time, so keep an eye out for updates.

Thank you very much for all your contributions, support and words of encouragement.

Cheers

Tony and Vanessa

Australia DC talk

Hi everyone

My mum has been to Sydney Australia for last the 48 hours to a short telomere conference.They had top medical specialists from around the world talking about telomeres and DC. There was a couple of doctors from America that I have met there too. Both mum and I were asked to go, but I decided that I would stay this time as I didn’t want to take any more time off work with been to hospital early this year. I said that my mum had to go anyway. She was just going over to Sydney to go to the conference, and then she was asked if she would speak about DC and DC Outreach.

This is the organisation that she is on the board for. The organisations core mission is to provide support to patients and families affected by DC. The outreach support also takes the form of connecting families with expert medical advice. Also DCO aims to put patients in touch with Drs who have familiarity with treatment as well as having online resources on their web page. DCO fosters a sense of community to a geographical diverse population through Facebook, bi-monthly meetings family chats, newsletters and Bi-annual family retreat at Camp Sunshine.

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Wedding and update

Hi everyone the wedding went off with out any problems. We had a great day and managed to get everything sorted before the big day. Here are some photos of our day http://www.tonyandvanessa.com/wedding-photos/.

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After the wedding we had our honeymoon and then we moved up to Wellington to live and life was going good. I was having trouble trouble swallowing some of my pills and mum said about this to one of the doctors on one the DC outreach chats and the doctor said that scaring of throat is part of DC. So one of  my nelson doctors had talked to the gastro team in Wellington and they had organised for me to have a throat scan on Wednesday the  9th of April. But the week before the scan I ended up in A & E and then the hospital for a few nights with a bad sinus infection. I just wanted to check out wellington hospital :-) haha. I was dizzy when ever I stood or sat up and felt a bit nauseous. I was put on antibiotics for a few days and I seemed to get better but then had to go on a longer stronger dose as it moved to my chest.

I went and saw the gastro team and they did endoscopy and found that there was some webbing forming in my throat. They disintegrated it and said that the rest of my throat was good and that the webbing may have been causing the problems and to see how I go. I seem to be able to swallow my pills better and haven’t noticed any more swallowing problems.

I have been seeing a dietician and she put me on ensure drinks which I don’t like the best but they are better than some of the other supplement drinks I have had. I have been trying to have one everyday but sometimes it is every second day. The doctors and dietician have said it would be healthy for me to put on a little bit more weight and so when I am sick I have some reserve too, as I have the tendency of dropping when I am sick. The Ensure is working as when I was in hospital last time and with sinus infection and then a chest infection I didn’t drop much weight and have put on a bit of weight lately.

My work has been going well and have been enjoying it. I have been able to do a few more hours lately but still have been taking it easy as not to over do it.

Have Facebook comments going now :-)