I've been asked a lot of questions after yesterday's post so thought I'd use this blog to answer some of them.
Q: If your results are so good why are you on the transplant list?
A: It seems crazy to some people that those on the transplant list are reasonably well. Some, like myself, even continue to work. It is a very common misconception that in order to be put on the transplant list you have to be on your last legs, in a hospital bed, hooked up to all sorts of equipment. This isn't true and unfortunately the majority that are in that condition are actually too ill for transplant. To be put on the list you have to meet several conditions. One is that your condition is terminal. Without a transplant it will kill you. You have to have good underlying health. That is your other organs are working properly, so for me that's mainly my kidneys and liver. You have to be compliant with medication. That means taking it as and when you should rather than just when you remember or your symptoms reappear. You have to be psychologically and emotionally strong enough to survive the list and go through the turmoil transplant brings. You must not be either overweight or underweight, if you are you will have to gain/lose weight accordingly. There are probably other things that as a patient I am not aware of but I believe those are the main criteria. Just because you have improved slightly or you are going through a 'good' patch doesn't mean you are taken off the list. Everyone knows good health is temporary but they need you as well as possible to ensure the best possible outcome so everyone works hard at getting you to, and keeping you in, optimum condition.
Q: How are you assessed.
A: I can only answer for those under going heart, lung or heart lung assessments. You will be put forward by your usual clinical team. You will then have all or some of the following tests. Lots of bloods, RHC (right heart catheter) test ECHO, ECG, X-ray, Liver function, MRI, CT, kidney function, lung function, psych assessment.
Q: What are these tests, how are they done?
A: Blood tests, you will have a lot of these. They will be looking for signs of underlying conditions that you may not even be aware of and the function of your liver. They will also be tissue typing you and checking your antibodies. All essential for getting that perfect match.
RHC, not everyone has this. If you are a PH patient you will probably have had a few already. This is where they insert a small tube into an artery to check the pressures in the heart, look for any defects and check the state of your arteries. I always have mine through the groin but some hospitals go through the neck or the arm. You will probably be admitted the day before or early on the day and told not to eat after midnight. (Tip: always shave the area before you go in as the razors they give are invariably blunt and sting like hell.) You will be put in a gown and may be offered a sedative to make you relax, my advice is take it, it makes the whole process a lot easier. Once in theatre you will be put on your back and have a heart monitor attached. They will then inject local anesthetic into the site they are using, this really stings but it doesn't last long. Some hospitals will let you watch what they are doing on a monitor. If they don't, or you'd rather not see what they are doing, ask if you can take a ipod in with you. I was allowed to and I barely noticed a thing.
ECHO, very similar to the ultrasound they use on pregnant women. You will be asked to strip to the waste and then.put into a gown. You will be asked to lie on your side and then they apply a very, very cold gel to a round plastic stick that looks a bit like an ice cream cone.They will then press this into your chest and rub it around until they find the bit they are looking for and take picture of it. This can be a tedious process and can last up to 40 minutes. Although not painful I find lying in one position makes me very stiff. (Tip: take a packet of baby wipes with you to remove the gel. It gets absolutely everywhere and the non absorbent paper towels they give you just spread it around.)
ECG, again painless and relatively quick. You strip to the waste and remove your socks and shoes. You will have anything up to twelve leads attached to you in the following pattern. One on each ankle, one on each arm, sometimes they put one on each shoulder or collar bone and rest all over your chest. You have to lie very, very still but it is usually over in under 5 minutes.
MRI, this is where you are placed in a very narrow tube to have more detailed x-rays taken of your internal organs. The tube is very narrow and it is a good idea to point out from the beginning if you have any problems with enclosed spaces. I don't but did feel a bit anxious towards the end of the test. You do not need to move all your clothing but ladies may be asked to remove their bras. The machine is extremely noisy and makes horrible banging and clunking noises. You will be give headphones to wear to protect your ears and enable the technician to speak to you. (Tip: leave all you jewelry at home for this one. Don't even think of sneaking a bit of metal past in any shape or form. There are two reasons for this, the MRI uses huge magnets so anything metal will be pulled out of or off you. The machine also heats up any metal so you are at risk of severe burns if you leave it on.)
CT, similar to the MRI but the tube is larger and quieter. You will lie on the table, again you only have to remove bras that have metal in them, with your arms above your head. They will tell you to hold your breath etc at certain points. During the test they will inject a dye into your arm which will show up the blood supply in greater detail. It will feel as though you are having a hot flush and will make you feel desperate for the loo. It passes in seconds though so nothing to worry about.
Kidney function. You will be given a large plastic bottle and over a 24 hour period every time to pee you have to pour the results into the bottle. The bottle is then taken away and tested.
Lung function, you will be given a series of tests that basically involve blowing into different tubes. These tests measure your lung capacity and how efficiently your lungs exchange oxygen for carbon dioxide and other gases. (Tip: take a bottle of water with you, I found I developed a very dry mouth.)
Psych assessment. Before you even get there your PH or cardiac teams will be asked how you cope with medication, illness etc. When you are in hospital for assessment several 'nurses' will come and talk to you about your family, background, how you feel about your illness, how you feel about transplant etc. You will not realise it at the time but they are checking you out to make sure you are going to be able to cope with what's to come.
Remember these are based on my experiences. Some hospitals will do things differently and sometimes tests are done slightly differently if the people doing them are looking for specific things.
Q: How did you feel being told you needed a transplant?
A I suppose anxiety and relief in equal measures. This is a really difficult question for me to answer because I was told at diagnoses I would one day need a transplant. Basically I knew it was coming and had at least four years to think about the possibility before actually being put forward.
Q: What is it like being on the list?
A: Hard, very hard. You think it is going to be a doddle. All you have to do is wait but when you are waiting for a new lease of life it becomes very difficult as the weeks and months pass. Some are very lucky and get a call almost immediately and then some wait for years gradually sipping towards being too ill to stay on the list. My advice would be do not go for it unless you are absolutely sure you can do the long haul. Try and keep yourself distracted and DON'T put off doing things until after the transplant. Remember there is always the chance you will not get one and you will regret not doing things while you had the chance.
Well I hope that answers a few things for you. Please remember I can't cover everything so if I've left something out then please ask. If I've got something slightly wrong, and I know there are a few medical types out there, then I'm sorry. I am not medically trained and can only answer from my own person experiences.
Right time for a cuppa. Next blog tomorrow.
A: It seems crazy to some people that those on the transplant list are reasonably well. Some, like myself, even continue to work. It is a very common misconception that in order to be put on the transplant list you have to be on your last legs, in a hospital bed, hooked up to all sorts of equipment. This isn't true and unfortunately the majority that are in that condition are actually too ill for transplant. To be put on the list you have to meet several conditions. One is that your condition is terminal. Without a transplant it will kill you. You have to have good underlying health. That is your other organs are working properly, so for me that's mainly my kidneys and liver. You have to be compliant with medication. That means taking it as and when you should rather than just when you remember or your symptoms reappear. You have to be psychologically and emotionally strong enough to survive the list and go through the turmoil transplant brings. You must not be either overweight or underweight, if you are you will have to gain/lose weight accordingly. There are probably other things that as a patient I am not aware of but I believe those are the main criteria. Just because you have improved slightly or you are going through a 'good' patch doesn't mean you are taken off the list. Everyone knows good health is temporary but they need you as well as possible to ensure the best possible outcome so everyone works hard at getting you to, and keeping you in, optimum condition.
Q: How are you assessed.
A: I can only answer for those under going heart, lung or heart lung assessments. You will be put forward by your usual clinical team. You will then have all or some of the following tests. Lots of bloods, RHC (right heart catheter) test ECHO, ECG, X-ray, Liver function, MRI, CT, kidney function, lung function, psych assessment.
A: Blood tests, you will have a lot of these. They will be looking for signs of underlying conditions that you may not even be aware of and the function of your liver. They will also be tissue typing you and checking your antibodies. All essential for getting that perfect match.
RHC, not everyone has this. If you are a PH patient you will probably have had a few already. This is where they insert a small tube into an artery to check the pressures in the heart, look for any defects and check the state of your arteries. I always have mine through the groin but some hospitals go through the neck or the arm. You will probably be admitted the day before or early on the day and told not to eat after midnight. (Tip: always shave the area before you go in as the razors they give are invariably blunt and sting like hell.) You will be put in a gown and may be offered a sedative to make you relax, my advice is take it, it makes the whole process a lot easier. Once in theatre you will be put on your back and have a heart monitor attached. They will then inject local anesthetic into the site they are using, this really stings but it doesn't last long. Some hospitals will let you watch what they are doing on a monitor. If they don't, or you'd rather not see what they are doing, ask if you can take a ipod in with you. I was allowed to and I barely noticed a thing.
ECHO, very similar to the ultrasound they use on pregnant women. You will be asked to strip to the waste and then.put into a gown. You will be asked to lie on your side and then they apply a very, very cold gel to a round plastic stick that looks a bit like an ice cream cone.They will then press this into your chest and rub it around until they find the bit they are looking for and take picture of it. This can be a tedious process and can last up to 40 minutes. Although not painful I find lying in one position makes me very stiff. (Tip: take a packet of baby wipes with you to remove the gel. It gets absolutely everywhere and the non absorbent paper towels they give you just spread it around.)
ECG, again painless and relatively quick. You strip to the waste and remove your socks and shoes. You will have anything up to twelve leads attached to you in the following pattern. One on each ankle, one on each arm, sometimes they put one on each shoulder or collar bone and rest all over your chest. You have to lie very, very still but it is usually over in under 5 minutes.
CT, similar to the MRI but the tube is larger and quieter. You will lie on the table, again you only have to remove bras that have metal in them, with your arms above your head. They will tell you to hold your breath etc at certain points. During the test they will inject a dye into your arm which will show up the blood supply in greater detail. It will feel as though you are having a hot flush and will make you feel desperate for the loo. It passes in seconds though so nothing to worry about.
Kidney function. You will be given a large plastic bottle and over a 24 hour period every time to pee you have to pour the results into the bottle. The bottle is then taken away and tested.
Lung function, you will be given a series of tests that basically involve blowing into different tubes. These tests measure your lung capacity and how efficiently your lungs exchange oxygen for carbon dioxide and other gases. (Tip: take a bottle of water with you, I found I developed a very dry mouth.)
Psych assessment. Before you even get there your PH or cardiac teams will be asked how you cope with medication, illness etc. When you are in hospital for assessment several 'nurses' will come and talk to you about your family, background, how you feel about your illness, how you feel about transplant etc. You will not realise it at the time but they are checking you out to make sure you are going to be able to cope with what's to come.
Remember these are based on my experiences. Some hospitals will do things differently and sometimes tests are done slightly differently if the people doing them are looking for specific things.
A I suppose anxiety and relief in equal measures. This is a really difficult question for me to answer because I was told at diagnoses I would one day need a transplant. Basically I knew it was coming and had at least four years to think about the possibility before actually being put forward.
Q: What is it like being on the list?
A: Hard, very hard. You think it is going to be a doddle. All you have to do is wait but when you are waiting for a new lease of life it becomes very difficult as the weeks and months pass. Some are very lucky and get a call almost immediately and then some wait for years gradually sipping towards being too ill to stay on the list. My advice would be do not go for it unless you are absolutely sure you can do the long haul. Try and keep yourself distracted and DON'T put off doing things until after the transplant. Remember there is always the chance you will not get one and you will regret not doing things while you had the chance.
Well I hope that answers a few things for you. Please remember I can't cover everything so if I've left something out then please ask. If I've got something slightly wrong, and I know there are a few medical types out there, then I'm sorry. I am not medically trained and can only answer from my own person experiences.
Right time for a cuppa. Next blog tomorrow.
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