Week 1 on Kalydeco

Day 4, 5, 6 & 7.

This week has gone quite like the previous days but I am starting to feel like I have a little more energy. The mornings are normally the most difficult time of the day for me but they have felt easier than they did 2 weeks ago.

My sinuses are still clearer and the sore throat is almost gone. I haven't been coughing much up chest-wise just yet although I have been trying lots of things to help. I've doubled up on my Pulmozyme (DNase) and have been taking Mannitol and more Symbicort.

I have a feeling that the Codeine I am taking for pain relief could be suppressing the cough to some extent, it Kalydeco helps me with the pains I do get I am hoping I could lower the dose.


SATs taken on various days (Oldest to Newest)








The one below is just from getting dressed in the morning.









There hasn't been to much change Saturation wise this week. Do think it's going to take a little while longer than the 2 weeks my doctor talked about.


Here are a few pictures of a couple of meals I've been having with Kalydeco:
















My morning tablets:





Thank you again for all your support everyone, you have all been so kind and amazing to me.

I will post some more updates in the next week.

Take care and thank for reading.

Rob

Day 3 on Kalydeco

Thursday 23rd August.


Thursday started just like Wednesday, I woke up and did my normal routine. I took Kalydeco with some small chocolates and a slice of toast, after I had my other morning tablets.








When I woke up my throat had felt a little bit worse than it did on Wednesday and I was a bit more productive in the morning.

I spent the day at a few supermarkets doing a bit of food shopping with my Dad and my Nan. I was in the local paper today and they did a lovely article on me getting Kalydeco. While being a bit more active I thought I was definitely more productive than usual and I felt as if I was clearing a bit more.

Throughout the day my throat had gotten worse, it is kind of like having tonsillitis but I was having plenty of water and I didn't let it bother me too much.

I still think things have become a fraction easier than before, I don't need as much recovery time after coughing and at times my airways feel a little more open.

I did my SATs at rest and with a bit of deep breathing I managed to get my Heart Rate down and my SATs up, my heart rate was in the 90's at rest to start with while my SATs were 92-93. This was the lowest I have ever managed to get my heart rate down to.




I took my evening Kalydeco tablet with 2 slices of Bacon and 2 small slices of Brie Cheese. I was quite full from dinner so this was a little difficult to eat but I managed it.




Thank you all for the food recommendations, I will be trying a few of them in the coming days. Thank you for all the help and advice you have all given me also.



My article in the Swindon Advertiser:

Location:Swindon, England.

Day 2 on Kalydeco.

Wednesday 22nd August


Today started just like every other day, I woke up and went downstairs for a cup of tea to take my tablets with.

In the mornings just after I wake up I normally cough a lot which takes me a little while to recover from, my chest aches and I find things are more difficult to do but this morning was a little bit different. My chest felt a tiny bit clearer, I didn't need as long to recover from coughing and I felt I had a little more energy which was great.

I took my 3rd dose of Kalydeco with some small chocolates and had my other morning tablets not long after.





I went about the day doing my normal routine, I couldn't help but notice that there was a tiny difference in how my chest was, especially when breathing. It was as if it was things felt a little clearer.

I do think I am beginning to get one of the side effects though as I am starting to get a sore throat. I won't let the throat stop me from taking the tablets though and hopefully it will get better over the next few days.

I decided to take a picture of my SATs at rest as a reference point to see if they change over the coming weeks.







I took the 4th tablet with a bowl of Cheesy Nachos and a Sour Cream & Chive dip. I've been thinking about foods that I could take with the tablet when I had a lovely message from a lady on Twitter suggesting I try Bacon as it's fatty and it gives the tablet something to bind to. Tomorrow I shall go out and buy some Bacon and give it a go.








Thank you for all the lovely messages and suggestions, I really do appreciate it and they make my day.

I will report back tomorrow with Thursdays update.

Thank you for reading my blog.

Rob

Location:Swindon, England.

Kalydeco & Day 1.

After 3 years of trying to get on the trials, 9 months after we first went down the compassionate road and 5 months after Vertex approved me I now have Kalydeco!











It's taken so much work to get here and I couldn't have done it without some very special friends.

I had an inkling about what yesterday's appointment may hold. The email from hospital asked for blood tests and to sign the paperwork but I wasn't sure if I would get to take the drug away that same day.

I only told a couple of people what might happen, I told my sister but we didn't tell my parents just in case as I didn't want to get their hopes up again for nothing. I told mum that our clinic appointment had come forward and that they wanted to see us on the Tuesday for clinic instead.

When we got to the hospital and were taken to the 'quiet' room and one of the staff said she would go and tell my doctor I was here and she would bring the paperwork through, this is when I told Mum and she was so shocked and happy. We had been waiting for this day for such a long time and it was finally here.

Me and Mum went through the paperwork and everything seemed okay, I signed the paperwork and the prescription was written up. Pharmacy told us it would be a 40 minute wait so in that time we had a talk with my doctor, had blood tests and lung function.

I didn't think I did very well on the lung function as I thought it was the worst I have ever felt doing it before but to my surprise it was up by 1% to 25%. I was so happy with this, it's such a nice surprise when it goes up and now down.

By the time all that was done the prescription was ready and me and Mum went to collect it from pharmacy. When we got there andI handed the ticket over they asked if I had ever taken the drug before, I couldn't help but smile as I said no. The pharmacist then told me how to take it and showed me what the tablet looked like.

We left the hospital and went to the car and parked close to a nearby pub, we decided to go there for dinner to celebrate while I took my first dose.

Kalydeco has to be taken with a fatty meal and the dose is 1 tablet every 12 hours.

I opened the packet and was ready to take my first tablet, while Mum recorded video I swallowed the first dose with some orange juice and never felt so relieved.

I am so happy that after all the trying I now have Kalydeco, it's like a weight has been lifted off of my shoulders.

I'd like to thank My Hospital, My Doctors, The Trust, My Special Facebook Friends, Vertex and everyone else who supported me and helped make this day happen. I am truly grateful for all your help.

I will report back regularly with updates on how I feel and any changes I experience.

Thanks again everyone, you are all so lovely.









- Posted using BlogPress from my iPad

Location:Sigerson Rd,Swindon,United Kingdom

Transplant Assessment

Hi everyone

It's been quite a while since I last updated the blog with any real news about what has been happening with me.

To tell you the truth there hadn't been too many developments but now I do have some news to share.

I've not long just finished my 3rd transplant assessment at Newcastle's Freeman Hospital. I've not quite received my summery letter just yet but I will write a little about what they told me from memory and once the summery letter arrive I will go in to more detail.

The transplant assessment wasn't much different to the last one, I had all the same tests and saw the same team members. The tests involved 16 bottles of blood being taken, walk tests, lung function tests, heart tests, x-rays etc.

When it came to the end of my assessment the doctors and team members went off to have a meeting about what their decision was. This takes about an hour and is the longest hour I've ever experienced.

When the team came back to tell me their decision I was given some mixed news, although my lung function is 12% worse than it was two years ago (19-24%) they think I have remained quite stable and they think I am currently too well for transplantation, this is the news that I most wanted as the whole transplantation route is quite scary and makes me really nervous. While the lung function is worse I've improved in other areas, they mentioned my lung pressures were phenomenal and that various blood tests indicate I'm in a better position/the same position now that I was in last time we went to see them 2 years ago.

I did ask about why they think I have improved in some areas or remained the same while the lung function tests keep on going down and they said its not uncommon anymore, they are seeing it more and more nowadays as people with CF have better nutritional support.

We went on to talk about the Atypical Mycobacterium which is probably the more important side of this post. This is where the mixed news comes in. Since I last saw the team they have transplanted a patient with Atypical Mycobacterium, this patient was in a much better position in regards of sensitivities, the patients mycobacterium wasn't resistant to any antibiotics. This patient had a transplant almost a year ago now and because of problems with the atypical they haven't really left the hospital since. The NTM unfortunately went on to reinfect the patients chest cavity and haven't been able to eradicate it.

When you transplant a patient with Atypical or multi resistant pseudomonas you have to imagined their lungs are two big pus filled sacks, removing these lungs without spilling any of the bugs into the chest cavity is very difficult. Lungs can be stuck to the chest wall which means taking them out without spilling any bacteria is even more difficult. In the case of this patient they transplanted them and the atypical then went on to infect their chest cavity, since the transplant they have been trying to eradicate the bugs with no success.

The spilling of bacteria when you transplant a patient with Atypical is one danger but another is that the bacterium could be in the sinuses thus once you remove and transplant new lungs then whatever infection is hiding in the sinuses could drip down and infect the new lungs.

The trip to Newcastle this time made me feel as if they are a little more cautious of Atypicals because of what has happened. While they are still the best chance anyone in the UK has of getting a transplant at the moment with Atypical Mycobacterium they have to weigh out the dangers and the risks involved.

The biggest news I heard while I was in Newcastle was the fact that while I was up there a worldwide conference was taking place in the United States that would outline every transplant centres protocol when it comes to Atypical Mycobacteriums and other Multi Resistant Bacteria. While this conference has now taken place the results won't be known for a few months.

I've tried my best to search the Internet for this conference but so far haven't found much, it's such an important conference as it's going to affect many lives and change transplant centres decisions worldwide.

One thing I do know is that Atypical Mycobacterium and other Multi Resistant bugs are going to become more of a problem in the future, more and more people are being diagnosed with them and something is going to have to be done about them.

If you have Atypical like me then I think it's best for now if we look at ways of eradicating it. I'm going to be concentrating on finding new antibiotics and treatments that will help our cause. If we can eradicate it with new therapies or treatments then transplantation will be much easier.

There is a new antibiotic called Arikace that gives a sustained release lipid formulation of Amikacin for inhalation, it offers smaller chance of ototoxicity while greatly improving the effectiveness of the Antibiotic. It's website states that it can help Non-tuberculosis mycobacterium (atypical mycobacterium) and is effective when it comes to treating gram-negative infections including Pseudomonas. The drug is from Insmed Incorporated and has just completed a Phase 2 study.

It's new antibiotics like these that we need to look out for, while they are still in trials it's vital we remain well for a day when we can get hold of them.

My advice now for people to consider while they are healthy, have mycobacterium and don't need a transplant is to look into eradicating the bug as it will makes things so much easier down the line.

I hope this post has helped, I'll post a more informed post when I receive the summery letter.

Location:Another Transplant Assessment and the threat of Atypical Mycobacterium.

Fundraising

Hi everyone.

I've had an e-mail from Joe Gillespie whose brother suffers from CF, Joe is participating in a Great Strides walk to raise money for the CF foundation and as a part of his campaign Callaway Golf are donating two staff bags which Joe will be giving away to those who support the CF Foundation through his team.

Joe told me that it was a pretty simple idea, for every $10 a person donates through his team, their name will be put into the hat one time (so if someone donates $100 they get ten entries).  The drawing will take place at 7:00 PM Eastern Time on April 2, 2011 and the winners will be announced on the day of the walk, April 9, 2011. The first name drawn will receive the RAZR staff bag and the second name drawn will receive the Diablo staff bag.

You can donate now by by visiting:

www.cff.org/great_strides/joegillespie

The bags will be custom embroidered with winners' names and the Great Strides logo.  Joe is hoping to raise as much awareness and money as possible for the CF Foundation. 

For more information on the Give Away you can visit Joe's Blog here and the Give Away page is located here.

Hope you're all well!

Rob

Tackle CF

(Click to Enlarge)

I was sent a really nice email from Simon over at http://bloggasm.com telling me that the team he works with is trying to raise $150,000 for CF research through social media.

This is a great campaign as it's doing two things that are extremely important for CF, it's raising money for vital research and it's also raising awareness.

Samsung and Sears Electronics will donate $5, up to $150K, to the Boomer Esiason Foundation for every social action designed to help spread awareness of Cystic Fibrosis.

There are three ways in which you can take part.

1. You can share the clipboard infographic on facebook
2. Check in at U.S. Sears locations or the Samsung Experience at NYC on Foursquare
3. Tweet the #tacklecf hashtag on Twitter (Click here to Tweet!)

For more details head over to the Tackle CF website.

Happy Holidays & Thanks for reading!

2 weeks on without Atypical Mycobacterium Treatment

Hi everyone.

I thought I should let all know how I am getting on without treatment for my Atypical Mycobacterium Abscesses.

The good news is that there hasn't been much notable change in how I am feeling. I am coming to the end of a 2 week course of IVs which I feel hasn't really helped but I am happy that I am not feeling any worse.

I haven't managed to completely stop the painkillers but I have managed to more than halve them. It's quite strange as I have noticed that if I do not take any painkillers then I feel very breathless and I would be out of breath doing the smallest thing.

I will update again as soon as anything happens.

I really hope you are all well, Thank you for all the support.

Rob

Freeman Hospital Transplant Assessment

I had my first full transplant assessment a couple of weeks ago in Newcastle at the Freeman Hospital, my first transplant assessment was a day visit at Harefield Hospital who told me that I could not have a transplant because of my Atypical Mycobacterium.

I had all of the same tests I had in Harefield and a few more including a Walk Test and other types of Lung Function Tests. I was surprised with the results from the walk test and the lung function tests as they were higher than my last results. Freeman Hospital say that I have bounced back as much as I can from when we tried Tigecycline and Amikacin (Domestos grade Antibiotics) to try to eradicate the Atypical Mycobacterium which lead to me going into Renal Failure after only 6 weeks of treatment.

On the last day of my stay there was a meeting to decide whether I would be accepted onto the transplant list for a double lung transplant. Freeman hospital said I would be an ideal candidate for transplantation, however there was the matter of the Atypical Mycobacterium. Sadly I was given my second no but I have also been given something Harefield didn't offer me which were choices.

Freeman hospital gave me 2 choices, One would be to continue as I am, staying on all the Atypical Mycobacterium medicines, treatments and antibiotics or the other would be to stop all my Atypical Mycobacterium medicines. There is a very slim chance that I will ever be able to eradicate the bug with medicines.

The reason behind stopping the treatments is to see what happens, We know that the Atypical is resistant to all antibiotics but that doesn't mean the bug behaves the same way on the lab tests as it does in the body. If we stop the medicines and I am able to remain stable and do not get any temperatures then I could be considered for transplantation but the risks would be much higher than normal. If I become ill and get temperatures because I have stopped the medication then I will not be able to have a transplant.

It's a big risk to take because if I stop the medications and I get an infection I could become too ill to be considered for transplantation at all. I do know that if I do not give it a try I would regret it.

I went to see my Doctor today at my normal hospital today to talk about the options and I choose to go down the route of stopping my atypical treatment. It's a big risk but I know that I would regret not trying and never finding out if I can have a transplant.

I did learn something very important at Freeman Hospital, You can transplant people with Atypical Mycobacterium, The risks are higher but it can be done in some patients.

Freeman Hospital Transplant Assessment - Coming Soon

I had my second transplant assessment on the 1st June at the Freeman Hospital in Newcastle-Upon-Tyne, I will be posting some details soon.

Stay well Everyone!