Solving the Puzzle

Solving the Puzzle in Boston

Progress Update September

Further to Tony’s admission in Nelson hospital, he was moved to the medical ward and stayed there for 8 days. He was discharged with home oxygen and a slowly decreasing dose of Prednisone. His infection levels came right down, back to the point of normal along with his Kidney function.

Tony was comfortably off the Airvo by the time he was moved to the medical ward, and started to do small amounts of exercise which he was maintaining and slowly increasing when he came home.

One of the drugs that has been discussed amongst the DC specialists and that some DC patients are using in other parts of the world has been suggested for Tony. This drug is one that Tony’s GP knows of and the Nelson respiratory specialist too, but was told this is isn’t available in NZ.

After he came home he started to have reactions that we all thought was because of Prednisone he was taking. He had a appointment booked with his respiratory specialist from Wellington for the 19.09.16 in Nelson. After discussing his symptoms with her, she immediately recommended lowering the dose and monitoring his symptoms as they want to keep him on a low dose at this stage. The Wellington specialist has since then put in an application to Pharmac to see if he can get the drug talked about overseas granted on special funding as a special case in NZ.

The following Monday the 26.09.16 Tony ended back up in hospital, the Dr came to the home and organised for him to go into hospital. Unfortunately after the Dr left he deteriorated further and we had to call an ambulance to give him stronger oxygen and take him in. Thank goodness this turned out to be a milder chest infection this time and he was given one dose of iv antibiotics and the Prednisone was put back up as it was decided Prednisone was not the cause of the reaction. He was admitted to the medical ward and put on oral antibiotics and monitored for another 24 hours before being discharged.

The antibiotics have now been extended another 2 weeks and he is showing improvement. He is still needing a lot of oxygen at home, but we are seeing slow improvement all the time.

Thank you so much everyone for your wonderful support, prayers, meals etc!

Tony’s Nelson ICU Update

Further to Tony’s admission into Nelson ICU, 9 days ago, he still remains in ICU but is slowly improving and hopes to go to the main medical ward in the next day or so. He expected to be at least 1 week in the medical ward.

The Danazol has been stopped, that was started a week or 2 prior to his admission. This is a drug we were trying long term to help Tony’s lungs. He may go back on Danazol once he has recovered. It is not sure if this was contributing to everything and his rash. Also there is another drug that will be discussed at the conference which we will now miss in America, that we may have to pay to have brought in ourselves for Tony.

Tony’s bloods also showed high allergy markers, that the Doctors are thinking he has had bad Asthma as well as everything else that has been going on. He has started on Prednisone, and is weaning off some of the heavy duty drugs. His infection levels have finally dropped.

Today he has had times on the oxygen prongs as they are trying to wean him off the Airvo machine. He has done really well with this. Thank you so much to everyone for your prayers and support at this time.

We have postponed our trip to America, that we were supposed to leave for this Friday. We are able to re-book our trip at a later date between now and January 2017. He is feeling much more up to visitors now, and this will be easier once he gets out of ICU.

Tony’s Nelson ICU Admission

Tony was admitted to Nelson ICU on Tuesday the 23rd of July, with shortness of breath and a very fast heart rate. Upon getting in there they did a wide variety of tests and got him onto 2 strong antibiotics to help his breathing and to start to clear up his chest which showed on a x-ray to have an infection.

Day 2 of his admission he broke out in a rash and was taken off the 2nd antibiotic in case it was an allergic reaction.

His breathing has improved over the course of the last 4 days and is looking better in himself. The rash has not gone, and further tests have been done to find what is causing this. Blood tests on day 4 of his admission showed the antibiotics are not bringing down his infection level and so he has been changed onto a stronger broad spectrum antibiotic.

He is currently remaining in ICU until further notice.

Lung Transplant Update and Hospital Admission

Before heading to Australia Tony came up to Wellington for a routine appointment with his lung specialist. She had news for him regarding Sydney’s opinion of him having a lung transplant. Sydney confirmed their agreement with Auckland’s recommendation of him to not have one. They had done a lot of research and sent this through to Wellington, which explained that his quality of life after transplant could become worse than what it is now due to the variety of medications and complications which come during and after transplant. His specialist said that lots of people can’t have transplants for various reasons, and so this is just a bend in the road for him.Tony’s specialist then spoke of doing a planned admission to improve his health as much as we possibly can in the next few weeks. As he was going to Australia the next day he couldn’t stay then.

Going to Australia

We then went to Brisbane, Australia for four days for Tony’s uncle’s birthday. We left on the Friday morning from Nelson to Auckland and he got to use one of the medical rooms to do his physio before getting our flight to Australia.
His lung specialist said that he had to use a wheelchair at the airport to conserve his energy and breathing. He also used a oxygen concentrator on the flight to Australia and back. We got the oxygen concentrator as a trial run for America and are glad that we did. It definitely helped to have the oxygen and it helped with bringing his oxygen sats back up into the 90’s. We had a problem with the oxygen concentrator and it stopped about 2/3 of the way across. His oxygen sats dropped into the 80’s and stabilized around 84. We swapped the battery and got it going again and they came back up into the 90’s. We had great time there with the family celebrating a great birthday. He was a bit tired after the trip and started antibiotics after he noticed his sputum changing colour slightly. Everyone else in the house had the flu at the time and we didn’t want to chance it turning into a chest infection for him.

Hospital admission

Last week Tony was flown up to Wellington and was admitted to the respiratory ward. Upon arriving he was very quickly greeted by a variety of lovely nurses and ultimately was settled into his own room.He met with his respiratory team and medical staff shared with him their plans for him to see the physio and dietitian promptly as well as him getting his first ever Picc line.
Day 1 saw Tony meeting a familiar physio and discussing different treatment options which we started straightaway in the form of percussion postural drainage (aka a good beating :-)) which has continued daily. Other strategies discussed was Autogenic drainage which Tony tried on day 2 of his admission with good results. The final idea from the physio included a Pari-Pep device which has the same principals as an accapella. It can be used at the same time as his nebulizer and may help to reduce the time it takes for him to get through his physio in the morning & evening. Visits to the gym have also been occurring upon our arrival here and happening every few days.
Tony’s picc line insertion went ahead very promptly on day 1 and has been very effective in him receiving his antibiotics. He says its more comfortable than having an iv line in and doesn’t need to be changed every few days. It was very interesting the way that they put the picc in. They used an ultrasound to find the vein and a tracking device which showed the Doctor where within the vein the line was. When Tony’s brother (Aaron) used to have picc lines inserted, they had to insert it, then get a xray to see if it was in the correct place.
Day 3 spirometry showed stable results and that his lung function had not decreased. We also started communication with his respiratory team about a drug called Danazol, in which we sent an article through to them. Different specialist departments were consulted and awaiting their responses. Seeing his respiratory team on Friday (day 5) led to them saying that he could possibly go home on Monday, pending weekend results. A second spirometry was scheduled for Monday. Weekend results showed an increase in Tony’s weight and a good feeling that his lung function may have turned a corner and could be on it’s way back up slowly!
Daily discussions with Tony’s physio over the course of his first week, has led to us organizing to collect a Pari-pep upon our return to Nelson.
Tony’s lung specialist thought that it would be a good idea for him to talk with the palliative care team, but not for the reasons you automatically assume when you hear this term! Palliative care covers a very wide range of responsibilities for people who have long term conditions that can’t be fixed immediately. End of life care is a very small part of what they do in their jobs! Meeting with them, led to a mutual agreement between all of them that talking and offering emotional/spiritual support sounded like a good way to go. They were very excited to hear of his upcoming plans that are in store for him and they look forward to hearing how he get’s on.

Monday – discharge day

Tony did a lung function test on Monday morning before being discharged in the evening and it was up slightly. He was told that doing a peak flow meter could help improve his technique.
Once back in Nelson a district nurse came to see him each day around 11am to give his IV antibiotic daily. This is to last for a week once home from Wellington hospital to make up two weeks worth altogether. He is feeling better being home and is enjoying his own bed and not being woken up at night for obs and antibiotics 🙂

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.




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. 


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.


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

Some of the items are listed below.


DSC_0266 DSC_0271


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

The Lord of the Rings
All three books signed by Alan Lee







The Hobbit – Illustrated
This book is signed by Alan Lee


DSC_0259 gollum photo

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.