Up The Farway Tree

TRANSPLANT - QUESTION AND ANSWER!

OK, here are some of the questions I have been asked...and some I know you want to ask but don't know how to (be warned - it's long!)

Do I still have Cystic Fibrosis?

The lungs that I now have are genetically different so they DO NOT have the CF gene and will never develop CF.

CF however is a multi organ disease, so I still have CF in the rest of my body - most of the effects are due to the sticky mucus associated with CF. This affects mainly the pancreas - so I need enzymes to digest my food, take vitamins that I cannot otherwise absorb and have CF related diabetes. It also affects the gut, causing cramps and blockages at times and also acid reflux, so I take medication for these problems. I also have osteoporosis (thinning of the bones) related to CF - this doesn't cause me noticeable problems and I just have to take some medication to keep my bones strong. The mucus in my sinuses is still sticky and harbouring various bugs, so I will still be prone to my usual bouts of sinusitis and I also occasionally suffer from CF related joint pain - however this was mostly during infections so I am hoping that will not be a problem now. People with CF can also have liver problems however I luckily have NO problems in this area. I will continue to see my local CF team for these issues, but won't need to see them nearly as much as pre transplant.

As you can see CF is quite a complex condition and certainly not just a 'lung disease'. However I have always been mostly affected by the lung component and compared to other people with CF am relatively lucky in the other areas. To not have CF lungs anymore will make a huge difference to my quality of life, and is something I have only dreamt of before.

Can I still get a chest infection?

Yes, I can still get a chest infection like any non- CF person, and will be at slightly greater risk due to my immunosuppression - but not because there is anything wrong with my lungs. The main issue in CF transplants is that you still harbour your old bugs in the sinuses and upper airway (where they attached the new lungs). This means that there is always a risk of infecting the new lungs with bacteria I previously carried. However this will not have the same effect as it did in CF lungs, because I don't have the thick mucus which provided the ideal breeding ground. I will continue to take nebulised antibiotics twice a day to try and prevent reinfection but may need oral or IV antibiotics in future if I did grow any bugs in the new lungs. I don't fully know the long term implications of this, but understand that it can be fairly common and will be tackled if it arises so I will not worry about that for the time being.


What was it like to breathe after the transplant? Did it feel deeper?

When I initially woke up it did not feel any different - because of the pain preventing deep breathing and the new lungs needing time to settle in. The feeling of restriction around my chest has only just started to lift now (5 weeks post transplant) and I now feel like I can breathe deeply. This is most noticeable when exercising, because I previously felt 'air hungry' like I just couldn't get enough air into my lungs, where as when I get breathless I am breathing deep long breaths and can recover quickly. Someone also asked if my lungs felt different because they were not full of mucus - the answer is yes! Part of the reason however is that the nerves to the lungs have been cut, so I actually have no/little feedback from my lungs and do not feel when there is mucus, unless it is in my main airway (which is still my own, with intact nerve supply). I therefore am advised to do some deep breathing every day and cough to make sure there is no mucus lurking. It does however feel amazing to have a clear chest and not have physio to do - it is so much easier to sleep without all the coughing, and I don't have to worry about clearing my chest every day, which was a major task, especially towards the end of my time on the list, when it was exhausting and felt never ending I could have done physio all day and still not cleared my chest - it was a big task. It's a lovely feeling to have a clear chest and possibly the best bit of the transplant so far!

How long does a transplant last?

Unfortunately a transplant is not a cure but its aim is to increase life expectancy and improve quality of life. The general statistics quoted are that 80% survive the first year, and 50% survive 5 years. However, Newcastle showed me unpublished data two years ago at my assessment where they had taken only the CF patients statistics and the data showed 80-90% 1 year survival, 70% 5 year survival and 50% 10 year survival. CF patients probably do better because they are used to drug regimes so comply with anti-rejection medications and also because they are younger, so therefore otherwise fitter than the average transplant patient. Also to note, is that the data must be at least 10 years old, so survival data on transplants today will hopefully be much better. I have heard of people doing well 15 years and I certainly aim to top that! If you compare this to the expected 50% two year survival quoted for people placed on the transplant list and the fact only 50% of people waiting actually get a transplant, then the odds are now in my favour :-)

Can you get a second transplant?

It is possible for some people to get a second transplant if the need arises - but very rare. The information I was given said that medical issues arising from the original surgery will often prevent further transplantation. It is something that can however be evaluated if need be, but would be a last resort and not something I need concern myself with at the moment.

Why is life expectancy still reduced?

One of the most common reasons for transplant failure is people not taking their anti-rejection medications properly. Hard to believe I know! With all the alarms I have set on my mobile phone, there is no chance I will miss any doses. In the first year the biggest risk is from infection and acute rejection, the latter actually being easier to treat. The risk of infection is always present so to try and prevent this I am on long term antibiotics and anti-virals. After 6 months, there becomes a risk of chronic rejection where the lungs become scarred and lung function starts to fall - this is a poorly understood process but some treatments are available to help, although not cure.

The other reasons for reduced life expectancy arise mainly from the effects of anti-rejection medications on the rest of the body - they are tough on the kidneys and can cause renal failure (it is possible to get a kidney transplant and I know people who have), an increased risk of certain cancers and the ongoing risk of some unusual infections. There is no way of predicting whether any particular person will develop problems, so you just have to stay vigilant to any signs and symptoms, contact the transplant team for advice and keep your fingers crossed that you don't encounter many, if any of these problem. Obviously I have had one episode of acute rejection, which is almost to be expected and I may have more. So far, I have not encountered any other issues and hope to keep it this way.

Although this list may sound a bit scary (and I apologise to any pre-transplant readers) it is something I have to contend with and might explain why I still get myself a bit worried from time to time. It's really like having a different, and quite unpredictable illness to deal with. However the other option of not having a transplant only had one possible outcome - continued deterioration and a much reduced life expectancy. With transplant I gain much needed quality of life and the chance to actually LIVE my life.

Can you have children after a transplant?

Yes, some people can and Newcastle have a few people who have had children successfully. It is not advised in the first few years. and there is some data to suggest that it can increase risk of rejection early on especially if you have had previous episodes. Some of the drugs could also affect the unborn child, so it is something that has to be discussed with the transplant team. Another consideration would be the risk of passing on the CF gene - 50% if your partner is a carrier (which can be tested for). This however is a personal issue which I won't go into on a blog.

What do I need to avoid after a transplant?

Most of the main restrictions are in the first 3 months and are mainly aimed at reducing risk of infection. In the longer term this still applies, but the rules are not quite a strict. Regarding food, I have to treat myself like a pregnant woman - no soft cheese, pate, raw fish, rare meats - basically anything with higher risk of food poisoning because this would affect the absorption of my anti rejection drugs, as, unfortunately, does too much alcohol! It is however allowed in moderation (whatever you take that to mean;-)) You also have to be careful digging in soil, compost bins etc due to bacteria in the soil and always wear gloves if gardening. I was also told not to use showers running off large water tanks, such as found in large hotels or hospitals, because stagnant water carries a risk of certain bacteria, and to always wear high factor sun cream, even in this country, to reduce risk of skin cancer. The rule of avoiding people with colds or other infections is long term, although difficult to completely adhere to. It is however all about balance, and common sense should prevail.

What am I most looking forward to in the coming months?

I am most looking forward to getting out and about with Seb (and Andrew of course!) - which I have already started doing. I am looking forward to taking back control of my life; taking back on all the responsibilities I passed to others but can now do for myself. The simple joy of hanging up the washing :-) I am looking forward to catching up with friends and knowing I will be well enough to enjoy this, to plan holidays and know I will be able to go on them and to generally regain some semblance of a social life. Towards the end of the year I really hope I can think about getting back to work, something I have really missed in the past year. In essence I am just looking forward to life...just everyday life! Just so many possibilities and so many dreams to chase.....


P.s any other questions just post me a comment or sign the guest book privately :-)