Friday, 12 October 2012

A Day in My Life...

Having been free from hospital (well, aside from the outpatient appointments that is...) for almost three weeks now, life has settled down into a new routine. I have obviously needed a fairly rigorous treatment regime throughout my whole life, I am far more ill and more dependent on various machines and medications to lead any sort of normal life, it has become even more important that I follow a strict treatment routine. I thought that I should give you all a flavour into how my day to day life pans out!

8.00am – Luke or Mum (depending on whether Luke is at work) gives me my first dose of intravenous antibiotics (IVs) Currently these are Colomycin and Meropenum
8.30am – IVs finish and I come off my Non Invasive Ventilator (NIV), switch to my oxygen through nasal cannula and get washed and dressed for the day.
9.00am – Come downstairs and take my morning tablets (approx 10 drugs including slow release morphine again to combat chronic chest pain) and eat breakfast, I usually try to ensure that my breakfast contains about 700 calories. I also take two types of insulin in the morning; a long acting insulin and a short acting one. If my chest is particularly painful I will also apply a Lidocaine patch to the affected area.
9.30am – DNase; this is a nebuliser which helps to break down the thick mucous in my lungs to make it easier to cough up during physiotherapy. This needs to be taken about an hour before I begin physio.
10am – Exercise time, I use my NIV to do some exercise on the Wii fit. The reason it is necessary for me to use the NIV is to allow my muscles to actually become worked. If I were to not use the NIV, I would become out of breath before my muscles had a chance to even warm up. This means that I can (try) to keep my arm, leg and core muscles in some sort of shape which is really important for transplant.
10.30am – Physiotherapy; whilst using the NIV to help me take deeper breaths and get behind sputum secretions, Luke or Mum will tap and shake my chest to help me cough it up.
11.15am – TOBI nebuliser. This is nebulised Tobramycin which is another antibiotic to help control the pseudomonas aeruginosa that my lungs are colonised with.  At this time I also need to check my blood sugars to make sure that I’ve taken enough insulin with my breakfast. 

12.30pm – Lunch! Again I need to take short acting insulin with my meal and I aim to consume about 1000 calories in my lunch... Got to pile on those pounds!
2.00pm – Physiotherapy, as before
2.45pm – Second dose of IVs of the day.
3.15pm – IVs finish and Mum goes home (if it’s a weekday). Also check blood sugar levels.
4.00pm – Snack time, usually something like a Pot Noodle, or a hot dog as well as a bit of healthiness in the form of fruit. I also try to do some kind of gentle walking exercise during this time, without the use of the NIV.

6.00pm – Dinner time; again this is usually about 1000 calories as I need to consume about 3000 calories a day.
8.30pm (ish) – Physiotherapy, as before. Check blood sugars.
9.00pm – TOBI nebuliser and evening tablets, approximately 5 drugs this time, including slow release morphine.
9.30pm (ish) – bath; sometimes I need to use my NIV whilst having a bath if I’m particularly tired or finding breathing a struggle. I usually have some sort of snack here too (not in the bath might I add!)
10.00pm - Final dose of IVs of the day
10.30pm - Finish IVs!
11.00pm – Bed, attach myself to the NIV mask. (I also check my blood sugar levels before I go to sleep)

Reading this routine, it may seem somewhat demanding and I suppose it is to an extent. It does mean that I require Mum, or somebody else if Mum isn’t around to come down in the morning and afternoon to help me when Luke is at work. Sometimes it does feel that I am just living this routine and waiting for the transplant call to come. Fortunately it is flexible to an extent and I am able to be taken out for a bit of shopping, or a coffee. However, as is evident, the evenings are less busy in terms of treatment than the day, but after a long day at work the last thing Luke wants is to go out again! This means that we do have to plan outings and such in advance. Also, what I also have to take into consideration is that I get so tired from going out that I need to spend the following day taking things more easily (namely sleep a lot!). Luke and I do still manage to do things, like go to the cinema (well, we haven’t tried it since coming out of hospital, but we do want to go and see the new Bond film when it’s released!!) We also manage to out for meals occasionally. I am very lucky to have many fantastic friends who come round to see me and are able to fit around my routine. The support of my friends and family is definitely what keeps me strong during this time and hopefully, if that call comes, I will be free from this regime and I can enjoy the freedom that I experienced before!

Wednesday, 3 October 2012

Great Limitations

The old adage is correct - time certainly does fly, another six months have shot past, marked by another half yearly transplant assessment at Harefield. The results of the various assessments were alright in themselves, particularly seeing as I’ve only just been released from hospital and am still trying to build up my strength. However, I definitely noticed that this visit to the clinic was much more physically demanding than previous times which illustrated the fact that I have deteriorated somewhat since my admission to the Brompton.

After the glut of tests and a rather tasty lunch, the wait to see the doctor began. This time I got to see one of the consultants – Dr Carby, who is a lovely bloke and has experience in dealing with Cystic Fibrosis as well as the whole transplant she-bang which makes him really understanding of my condition. The whole team were already aware of the downturn I had taken and the ensuing stay at the Brompton. Dr Carby was able to deem me still fit for transplant, but the urgency of needing one is far greater now. The frustration he feels about my situation (and undoubtedly many others) was palpable. There isn’t really anything that he or any transplant team in the world can do to help me as the lungs that I require are incredibly rare. It is just a waiting game; One that I have been playing for two years and nine months, with no success so far. It is just a fact that small, O negative lungs are hard to come by.  This led him onto discussing with me the use of ‘extended criteria donor lungs’. This group of lungs include heavy smokers, lungs from over 60s, lungs from intravenous drug users and participants of ‘risky sexual behaviour’, donors with brain tumours, lungs from donors with viral infections including hepatitis and other drug manageable blood viruses.  Getting a good pair of lungs, but contracting a long-term viral infection would mean additional drug management and does pose medical risks, but given the state of my lungs as they are, this (whilst not ideal) still represents a better quality of life than I have at the moment and a better chance of a longer life. My window of opportunity of being ‘fit’ enough to survive a transplant operation is becoming smaller since my latest ‘blip’ as the doctors cannot predict how unwell I will become. Any chance of increasing the number of donor lungs available to me is one I’m willing to take. Therefore I signed the consent form (whilst blubbing, obviously) and Dr Carby said he would make a recommendation to the surgical teams. 

Dr Carby also wanted me to think about whether when the ‘time’ comes, would I prefer to be at home with my family and made comfortable or would I like to move to Harefield and receive ECMO (Extracorporeal membrane oxygenation) in last ditch attempt at getting lungs. ECMO in essence is a machine which performs the gas exchange (oxygenate and removes carbon dioxide) that the lungs should do, but outside the body. This is not a very nice procedure and is basically a way of buying me a little more time. I think I would want to fight to the bitter end as I am a fighter – we all have a survival instinct in us. Mine is really bursting out of the seams at the moment. At the moment I feel I would opt for ECMO, but it is incredibly hard to comprehend. 

It saddens me that doctors have to push the boundaries of medicine to increase the number of lungs available. If there were more donors on the organ donation register would it be necessary to put patients at additional risk? 

Having been a bit negative and feeling a bit fed up, I will not let CF define me nor defeat my spirit. CF is NOT greater than God. CF has taken away a lot of things from me, but it cannot take away from me my family, my pets, my friends or my love for them all. 

You, Lord, are all I have, and you give me all I need; my future is in your hands Psalm 16:5 (GNT)