So I promised to write a couple of factual, experience type of entries. (fun huh)
If you have any questions, even if you only see this like years after I have written it, then please get in touch - comment as I will still answer.
As today marks the start of national transplant week in the UK, I am going to start with Liver transplant.
Did you know that you are more likely to need an organ than you are to donate one?
Did you know that all major religions support organ donation as it is seen as a gift, not destroying any creation?
Did you know that a lot of people wont sign the register because they feel that if they were ill, they would not get the same treatment? This is completely untrue, as it would be different doctors dealing with it and the doctor treating you will always do their best to help you.
Did you know that in the UK alone, 3 people will die on the register everyday?
Only 28% of people in the UK are on the register and we have rank nearly the lowest out of all developed countries.
Show you care. Sign the register!
OK so my expiernce with transplant is slightly different from most peoples. My transplant was due to trauma (stabbing) rather than illness. This of course comes with its own good and bad points. I didnt have to go through the awful task of living life on the list, always waiting for the call, life on hold all the while getting sicker and sicker. But this also means that I did not get the chance to accept needing a transplant, in fact I didnt even know I had had one until about a month after it and the consequences didnt sink in for a long time after that. It also meant that I did not experience that suddenly getting better feeling that most people with transplants experience, instead, I remember being well one day and the next thing I knew I was ill and told I would never fully recover. From never seeng a doctor, never taking any tablets, never being sick, to suddenly attending a lot of differnt clinics, taking a handful of pills a couple of times a day and generally being exhausted everyday.
But I am coming to terms with it and I am still here, which has to be a god sign right.
I think out of all organs, the liver is the one people know least about. Heart and lungs everyone knows what they do and that you cant live without them. Most people know about kidneys and dialysis due to huge media coverage (It is the most common organ transplanted and generally the one with the best out come)
But, my parents for example, didnt even know what the liver did nor that it was that important. I think awareness has increased recently with all the media on alcoholism and such as well a bloody George Best (who caused the rates of organ donation, especially livers, to fall dramatically) So that is where I think I should start.
The liver is the largest organ (except for some places that tell you it is skin that is the largest) in the human body. It is located on your right hand side of the body, under your lungs. The main job of the liver is to aid the break down of food and pass it into the blood system. It helps to change the food into energy that the rest of the body can use.
The liver is the most complex organ and actually has 1500 separate functions, this is why, even with todays technology, it has been impossible to create an artificial liver. Liver disease/failure often shows as Jaundice, which is a yellowing of the skin and the whites of the eyes, due to a build up of chemicals (bilrium) in the blood. This may also be accompanied by things such as abnormal clotting or internal bleeding. Liver failure can also lead to low blood sugar volumes, that on their own can cause problems such as brian damage if not managed correctly. As Liver disease progresses t can cause damage to the other organs as they are under more strain.
Ok, so I am going to skip straight to after transplant now. Please remember that I am using my guide book and things that I have picked up since transplant. Things may have changed since I learnt or may vary in your area, so please check with your doctor if you are unsure on anything.
After transplant, life changes, hopefully for the better, but their is a lot to take in. My biggest suggestion, always keep a pen and paper close by. Jot down everything to look back on. and never ever be scared to ask questions!! There is no such thing as a stupid question.
You will learn a lot whilst in hospital, some of which im not going to really cover as I dont feel I remember enough of it, nor would it be useful to know before transplant or once discharged. This will include things such as physio showing you how to use a rolled up towel to support your abdomen so that you can cough with less pain. Get plenty of rest after transplant to heal quicker, but also get up and moving as soon as you can. The longer you sit, the harder it is to get going due to muscles breaking down. You may also have a lot of tubes to adjust to at first. You might have a T tube coming out of your abdomen that is used to drain fluids such as bile. It might have become nescary to have a feeding tube placed in your nose to give you extra nutrition whilst you recover. And probably the worst one to adjust to is a catheter, which will drain your bladder of urine until you are up and about and able to deal with toilet needs better.
And of course you will have at least one line in somewhere. This will probably start off as a central line in your neck. This is to give you fluids and medication such as painkillers.
The first three months after transplant are pretty tough, but hang in their, it will get better. Set backs are most often experienced in the first couple of months. This is because you need high levels of immunosuppression to begin with to stop the transplanted organ rejecting. You should avoid any sick people, or people with colds as best you can for the rest of your life, but most strictly in the first couple of months.
I would say, go out and buy a couple of big bottles of hand gel and place them all around your house, especially the kitchen. Makes sure everyone uses them regular and keep a small one in your bag and in your car. Public toilets are some of the worst places. I often look around and if they look nasty but I have to use them, I will gel my hands before I even come out the stall.
Your whole medication regime will have changed after transplant.At first you will have a lot of painkillers and of course some laxatives to counter act the problems caused by the painkillers. I was always told to use natural senna only.
You will also have immunosuppressants, sometimes called anti rejection medication. The body views the transplanted organ as a foreign object that should not be there and so it attacks it. Up to 3 types of anti rejection medication can be prescribed long term at the same time. They basically stop your immune system from working as effectively, which as I am sure you will gather, leads you a lot more open to infection. They also have some larger consequences as in they leave you more prone to developing certain types of cancers, especially skin cancers and ovarian cancer. Sun cream should be worn in daylight and you should avoid sun during the hours of 12 and 3. Regularly checking your skin for changes as well as making sure you attend any appointments such as smears can help to reduce your risk.
The main anti rejection medications are* Cyclosporin (Neoral)
*Tacrolimus (Prograf, FK506)
The amount you take of these drugs will often be changed after blood tests, especially in the early years. As time goes on you will be checked less and the dose changed less. I currently take Tacrolimus twice a day and Azathioprine once a day.
These medications all have their own side effects and effect everyone differently, however the most prominent side effect is tremor. You may have trouble doing tasks such as writing when your levels are altering a lot. The medications can also effect things such as mood and sleep, giving vivid dreams. By taking these medications, their is also a high risk of developing diabetes, but this will be tested for at clinics. It is a good idea to get a bone scan every 2-3 years too as the medications can cause weak bones (Osteoporosis)
You may require other drugs such as sedatives and anti depressants as you adjust to living with a transplanted organ. Anti biotics maybe required to begin with to help aid the body and they may also be used whenever you have an infection. Anti ulcer drugs will also be given due to stress and changing levels of acid in the stomach. Some people develop problems with their blood pressure whilst in hospital and so medication maybe needed to treat this also.
After transplant, should you ever take ill and see a 'on call' doctor or a doctor who you are not familiar with, make sure you tell them you have had a transplant. It is also a good idea to ring your transplant liaison to check that it is ok to take any medication that has been prescribed to you.
Generally speaking, you will get sicker, quicker than an average person. What can cause a cold that clears up in a couple of days in one person, can often cause a major infection such as pneumonia that takes a couple of weeks to get over in you. Therefore it is a good idea to keep yourself well and away from sick people where possible. It is also a good idea to be able to spot if you should start with an infection.
Personally, I know I am getting ill when I begin sleeping a lot more than normal and my temperature begins to play up. I feel cold even when everyone else is normal. If you get a temperature, be seen as soon as possible as the sooner you catch it the easier it is to deal with.
Healthy eating is essential after transplant, but there are a few precautions that you will need to take. Fruit and veg are great and you can still eat them! However, wash them all before you eat them. This goes for all pre packed salad and fruit as well.
You should never consume unpasturised milk or 'live' yoghurt. At the moment in the UK, there is a big thing with bringing out bio yoghurt. Every company seems to be going to bio, which is annoying when your not allowed it. The same with those little drinks such as actimel. They all contain live bacteria, which is ok for a healthy person, but with immunosuppressants they can cause infections and liver damage. The same goes for french of swiss soft cheese (camembert, brie), blue veined cheese (stilton) or any cheese with mould.
The one I struggle with is meat. I do love my meat. However you need to make sure it is fully cooked. If you ever travel to France, state 'Bien encoute' as they like to eat meat while its virtually still alive. (This was a major problem for me when I was in hospital their as they kept bringing me meat that was still bleeding, which is a big no no) I would suggest investing in a meat thermometer and a fridge thermometer to make sure your meat s kept at the right temperature. Cooked meat should only be kept for a maximum of 2 days and never ever reheated. It is also not recommended to buy things such as pre cooked chicken, especially in the likes of supermarkets where it is in a hot counter. This is because keeping the meat warm, can bread a lot of bacteria into it which can be dangerous.
Anything with raw eggs in it can be bad for you. This includes mayonnaise, egg nog and very lightly cooked eggs. Duck eggs and marzipan are also best avoided.
Drinks can be akward to remember which you can have and which you cant. In the UK they recommend not using bottled water. Tap water is far better for you and contains less bacteria. However if you travel abroad then they recommend switching to bottled water (But use a well known company such as vital, rather than the cheaper companies who just bottle tap water) or water purification. All other drinks especially fizzy drinks are fine to drank, however you should avoid ICE, again it can contain bacteria and such.
Eating out is ok to do, though a little nerving to begin with. Check with the waiter to make sure there is nothing in the food that you are not allowed to have such as mayonnaise. Buffet style meals are not a good idea (Though I do get naughty around this area, but I am a long time post transplant and on a very low medication level) Ask for food to be well cooked. And if you use fast food such as McDonalds, you can request that they cook your meat fresh. Only freshly cooked rice should be eaten and you should never drink out of a can! The metal on the lid breeds all kinds of bugs. Instead, wipe the top then either use a straw or tip into a glass.
Holidays are a great idea! Ideally, I would wait a year before going on holiday to far away from home. I cant stress how important holiday insurance is! (I am still paying the bills from my 4 day trip to France without insurance) At first after transplant, I went with the only company that did travel insurance for medical problems, now however there are a lot of companies about that do it. Be warned though, you will pay more for it than an average person and even more if you have experienced any rejection. I have gone years without liver problems, so at this stage, I phone the company I am going to go with. They allow me to get full insurance on everything except my liver for the same price as a regular person would pay for insurance. This is risky, because if anything happened to my liver, I would have to pay for treatment myself. However the way I look at it is that I always have bloods run before I go on holiday so I know my liver is working fine. It is unlikely to suddenly take a turn for the worst during a two week holiday and if I feel myself getting sick, then I can usually get home pretty quick. (I used to use Atlas for this purpose, but I use a different company now as I need cover for my other medical problems)
Make sure you take enough medication and a few extra as spare, I usually take an extra weeks worth. This is just incase you should get stranded for any reason. It is also good practice to split your medication into at least two bags incase any should get lost. (I also pack about 4 days worth in hand luggage just to be safe)
Be careful with vaccinations too as live vaccines are not allowed after a transplant.
This is one of the hardest areas to think about as I love animals. The main restriction (And I looked this one up in my handbook) are caged birds as they can cause lung disease. Cats and dogs are fine as long as they have all their vaccines and worm medications. Animals should be kept out of the kitchen were possible and litter trays and such should be cleaned using gloves and throughly washing hands afterwards. I wanted ferrets but was told this was not a good idea, however, I now have 2 tortoises, but I am very cautious with these. Someone else cleans them out and I wash my hands after every handling. (Though I like to kiss and cuddle them, which, I keep getting told off for hehe)
It is a good idea to avoid crowds for the first three months after transplant again due to infection, but once your three months are up there should be no problem. However if you come into contact with anyone with things such as chicken pox then you need to contact your transplant unit right away.
If you have a morning clinic, you should not take your morning medication until you have been and had your bloods tested. To begin with your bloods will be checked frequently (maybe 2-3 times a week) this will gradually become less until you find yourself only being checked every 6-12 months. (Currently, I see my transplant hospital every 6 months and my local hospital every 6 months in between, so my bloods are checked every 3 months. This probably would be less, but given my history they like to keep an eye on me as I am on a lot of different medications from different areas)
Useful things to have
Ok, so this is a quick list of my most useful items once I got home after my transplant.
First off comes alco gel.