Pulmonary Rehab Latest - Link to Taskforce for LungHealth

 Still no news about going on Pulmonary Rehab. It is now a year since I was told I was on the list for it. 

I would imaging all the respiratory staff are really busy with Covid patients and looking after them at the moment so happy to wait and do my best on my own.

What keeps going through my mind though is that the thousands of COPD patients throughout the UK are now being ignored as the NHS is drowning in Covid.  Its like Cancer and other life threatening chronic conditions - it is not going away - we are only going to get worse .

Something needs to be done..

With that in mind I was interviewed by the Taskforce for LungHealth and they have pub;lished my COPD story here: 

I was not told that I had been diagnosed with COPD for nearly two years | British Lung Foundation (blf.org.uk)

2020 - COPD Update - Exacerbations and Flying

 My last update in 2017 I had done Pulmonary Rehab.  It was at this Pulmonary rehab that the physio/nurse confirmed from my hospital file that they new about my COPD back in 2015 when I was diagnosed with Sleep Apnea.  At the time the Sleep Apnea and my heart condition was more important to treat. This was completed Feb 2017. Despite this I continued to struggle with just Salbutamol daily and Spiriva once a day.  Multiple exacerbations both in 2018 and 2019. 

2018 went to Mexico, Cancun. Within a day of being there I could hardly breathe and hardly walk more than 50 metres without rest. After 4 days of struggling I took my emergency steroids , prednisolone . These got me through the holiday and the flight home. 

On my return I saw my GP about the problems I was having.  My medication was changed and I had Forstair added to my daily drug intake.  This was a life changer for me. 2019 saw a complete change with taking Spiriva ( changed to Braltus ), Forstair and Salbutamol. 

End of 2019 I flew to Dominican Republic and coped really well with both the flight and the holiday compared to Mexico the year before. 

Couple of things. 

During 2019 I did a lot of flying with work. I had been to Japan and the USA. Now I was travelling weekly to Munich , Germany, flying out on a monday and returning on a friday.  I noticed I was struggling and getting worse both breathing and walking during the year.  For my holiday TUI asked for a fitness to fily letter. I contacted by GP who gave me a letter and charged me £20 for it. No tests !!

I started to monitor my flights to Germany and I noticed that my SATS were dropping in flight into the 80s and on a couple of flights into the 70s.  I started to keep a record of these. 

In January 2020 I had my annual spirometry at my GP and my FEV1 was now down to 37%.  My GP put me forward for Pulmonary Rehab again.  I also mentioned the problems flying. He wrote to my local hospital whose respiratory dept had me referred to Wolverhampton for a Fit To Fly Test. It transpires this is what I should probably have had done the year before.

It didnt take long during the fit to fly test. After 7 mins into the 20 min test my sats had plummeted and they stopped the test.  I was told that I must have oxygen for flying.  min 4lpm.  Due to the amount of flying I do it was recommended I get myself a POC. 

Then COVID hit ....... and we are all stopped. 

Hospital Appts cancelled.

Decided to take the advice the consultant gave 5 years ago and took redundancy and have retired. 

Finally - I learnt that with all the travelling about the Hidden Disability Scheme - Sunflower Lanyard. Made my travelling by rail and airplane so much easier.

Now have to try and find cheap insurance for holidays ... Ex Cancer, heart condition, Sleep Apnea, COPD, etc

Looks like the Prostate Cancer is still clear - PSA still in Undetectable range

 I haven't given an update since 2017. 

Bringing things up to date - 2018 and 2019 my PSA was undetectable. In 2018 I had the PSA test in Birmingham at The Priory, but this was a long drive when I could get it done locally and through the NHS. The NHS now do an ultra sensitive test so I am happy with that.

To be fair, nothing would be done unless a couple of tests show detectable and are above 0.2 so as I am below this and classed as undetectable I have chosen to use my GP for my annual tests.

So I am 7 years clear.

With COVID and the lockdown , I cant see me having my 2020 test until 2021 , but i am comfortable with that. 

Latest updates - HBA1c , COPD

When I was diagnosed with Prostate cancer I remember reading an article that said that if you overcome the cancer then you had to watch out for your heart and diabetes.  The problem I have found is that you end up with a catalog of problems that leads to a spiraling decline in your health.

My COPD has had a significant impact, am really struggling at the moment to breath and using my inhalers a lot.  I have also had multiple exacerbation's in the past two months that have led me to having to take anti biotics and steriods. Am certain the steroids have had an impact on my weight and as a knock on to my blood glucose levels.

I have completed pulmonary rehabilitation and now have just completed 12 weeks of fitness4life at the gym in Telford&Wrekin. These are supervised cardio-respiratory sessions. Am about to sign up for a membership to continue these as I have to get my exercise under control to enable me to breathe easy. But also this has to be done to fight my weight and help with my diet.

Have just had my annual blood test for HBA1c as I am high risk for Diabetes. Last year it was 46 (2016), this year (2017) it is 47.  I have already been suffering foot sores that could have been really serious. I am getting numbness in one foot and toes. I was hoping with the work in the gym and cutting down on various foods that this HBA1c would have gone down not up. So I am in the pre-diabetic range.  Diet and exercise is the only way forward. Its hard work with having COPD.

I have been given a Peak Flow meter for the COPD so I can measure my flow to see what my best is so i can detect when i am bad and heading toward an exacerbation. On a good day i am scoring 350 to 400 on the meter. A healthy person my age and height should  be in the 600s. On my bad days and currently with this heat and pollen / air quality I am scoring 250 if I am lucky. Lots of blockage in my lungs.

I dont seem to be improving. Time will tell however.  If I can do more exercise. My FEV1 was 53% , hopefully i can make improvements in the next 6 months so i dont drop below 50% into Severe.

Until the next update....

Breathe Easy everyone

COPD and Bronchiectasis - what is it all about

So my blog started about my prostate cancer. This seems to have been the catalyst for problems to start that I have never had before.

People have bucket lists of what they want to do before the die. I seem to be starting to collect a bucket list of illnesses.

Considering that until about 2012 with the cancer diagnosis i had hardly been ill in my whole life and hadnt had an admission into hospital, all that has changed.

I feel like I am a car thats starting to fall to bits.  I have a dressing table full of medication , tablets for the morning, tablets for the evening, tablets for bedtime, tablets for those special times .  Give me a shake and I probably rattle.

So, this post, COPD and Bronchiectasis. C.O.P.D. Chronic Obstructive Pulmonary Disease , an umbrella term for multiple diseases that impact breathing.  The British Lung Foundation have lots of info at https://www.blf.org.uk/support-for-you/copd .  Bronchiectasis is where the lungs get damaged - http://www.nhs.uk/conditions/C/Pages/Introduction.aspx

It seems I have both of these. In October 2016 I was told by my GP after having a spirometry test that my FEV1 or lung function was 53%.  I have just had a further review, Feb 2017 and been told that it is now 2.06 or 54% so roughly the same.  Since october I have had access to a Ventolin Inhaler and also an inhaler called Spiriva. The Spiriva is a preventer which slows down deterioration of my lungs, minimizing what they call exacerbation's or flareups that can cause more damage.  I have also had my flu jab and a pneumonia jab. The fact that my GP got me on these has probably arrested potential deterioration of my lungs. Now as a COPD patient I am also undertaking Pulmonary Rehabilitation which will also help me,

Am a little disappointed as it seems that back in march 2015 the hospital did spirometry tests on me.  Those results shown in the graphic below would seem to indicate that I had COPD back in 2015  - but no one told me about it. It also seems that at the same time the found that I had Bronchiectasis.

Well at least now I am under monitoring and treatment for these conditions.  I have read lots of good advice on forums that say i should be able to live many years managing this condition. There does have to be some drastic lifestyle changes though, diet, weight, exercise.

4 Years on - Cancer Free - PSA still undetectable

For those following the blog I had my PSA tested before Christmas 2016 and I am still cancer free, my PSA being undetectable at below 0.01 with the ultra sensitive test.  Agreed with consultant to continue to take the tadalafil and sidenafil for ED . Am continuing to attend a monthly support group that is fabulous as we can talk through the mental impact of this surgery/cancer that still plays on the mind. Does tend to get me down a lot what has happened at my age. Tend to keep thinking about it.

Other issues to worry about now though as I have problems with my breathing that they have finally confirmed as COPD.  So its, get over cancer and now fight the fight to keep my lungs working.

COPD and left Paralized Diaphragm

The night before I had surgery for ulna nerve decompression and transposition plus carpal tunnel I had phone call from GPS.  My latest spirometry confirmed sitting lung function of 53%. He has diagnosed me with stage 2 COPD. This on top of my raised left hemi diaphragm and left Paralized Diaphragm makes it tough to breath especially walking a while. Cpap helps a lot at night. Ventolin doesn't help enough so he has put me on Spiriva 18 Mcg daily.  All this gave a huge problem the following day as I was having surgery at the Nuffield and it doesn't have all the right facilities if I had major respiratory failure. I have been told now by my anesthetist to have future surgeries at nhs or facilities with such care capability.

Spoke to my ortho surgeon and he said I need to see specialist about the diaphragm.  The degeneration c3 c4 c5 may have caused this as that it where the Phrenic nerve is that controls left and right diaphragms.  Have already lost my left. Don't want to lose the right .

Will update blog when I find out more.

In meantime. Now have slow recovery from ulna nerve surgery.