Well I didn't expect that, still trying to take it all in.
Despite having to tackle the M1 and M25 during rush hour we made it to Harefield in just under an hour. As usual the car park was full despite the early hour but we managed to find a spot on our second sweep and we arrived in the ANZAC center by five past nine. We were greeted by the receptionist who immediately called Nicky one of the transplant coordinators down to see me. We were shown into a side room where we were given the itinerary for the day and had a quick chat about what to expect in the coming days/weeks/months.
First stop was an ECHO and as we were early I went straight in as there was no queue. Unlike some hospitals here they are quite free with their information and I was informed straight away that my heart, although slightly enlarged, was in very good shape but my pressures (that's the blood pressure in the pulmonary artery) were very high despite being on the Flolan.
Next stop was an ECG, again no queue, and once again it was good news. I have a steady strong rhythm with no sign of any problems.
I returned to the reception desk where I was given two pots and told to fill them, one was a sputum test, the other, well I think you can guess.
On to X-ray, no information given here but I was in and out really quickly and so onto bloods and lung function tests. This is where it all ground to a halt, well it had to happen sometime, and I had a thirty minute wait for bloods with another forty five minutes for lung function. I went into bloods expecting the usual two or three bottles to be taken. Sixteen bottles later, yes I kid you not, sixteen, a glass of water and well done I was back out in the waiting room where I had to sit for five minutes to prove I wasn't going to faint before nipping into lung function.
Lung function was where the good news stopped coming. My lungs are in a dreadful state with very little output in the blow tests. One machine kept flashing "Blockage! Check pipes" every time I blew into it but the it was my lungs and not the machine's pipe work that were at fault, or so the technician said, not sure if I really believe her. After all the huffing and puffing my SATs were through the floor at 70% so they stuffed an oxygen mask on me and made me wait until they recovered.
Back to reception and a short wait and then Nicky arrived to take us to see the consultant. Amazingly most of my test results were back and I was given a run down. Kidney, liver and heart function all normal. My weight is acceptable, phew! Generally I'm in "good nick" so then she chose to drop the bombshell. She wants me to have a transplant as soon as possible. Why? Well this is how she explained it.
At the moment the heart is in good shape, it is slightly enlarged but the size, shape and thickness is all within an acceptable range. The right ventricle, this is the important one for lung transplant patients, is very strong and shows no sign of stress. However, the unknown factor is how long it will stay that way. My PH is very aggressive, hence the rapid upgrade of medication over the last couple of years. Each medication has kept me stable for on average four to six months. I've been on Flolan for six months. At the moment things are OK and if they do start to go downhill again they still have the option of increasing the amount I'm getting. Unfortunately my lack of tolerance of the medication will be a limiting factor for this option and they may never be able to stabilise me again if I can't take the increase. Two years is no longer a viable waiting time and even twelve months would be risking it so she's going recommend transplant within six months. The reason being that if the right ventricle fails it fails really quickly and it doesn't take long to get past the point of being well enough for transplant. So it would be in my best interests to move quickly.
The one test that is still outstanding is one of the most important, and that is screening for antibodies. The more antibodies you have the greater your chance of rejection. The more pregnancies you've had the more antibodies you have so women tend to be turned down more often than men. It hasn't been a problem before but you do worry about it changing as infections can alter the count and I've had a lot of them this year. I will find out the results of this test next week. If all goes well the next step is a three day hospital stay so they can carry out a lot more tests, such as measuring my ribcage etc.
Obviously just because the consultant wants it done quickly doesn't mean it will be as I will still need to wait for a suitable donor, and I have to face up to the possibility that there will never be a match. At the moment though I'm still in with a chance and will be much further up the list than last time so I'm getting closer, at least I hope I am.
Despite having to tackle the M1 and M25 during rush hour we made it to Harefield in just under an hour. As usual the car park was full despite the early hour but we managed to find a spot on our second sweep and we arrived in the ANZAC center by five past nine. We were greeted by the receptionist who immediately called Nicky one of the transplant coordinators down to see me. We were shown into a side room where we were given the itinerary for the day and had a quick chat about what to expect in the coming days/weeks/months.
First stop was an ECHO and as we were early I went straight in as there was no queue. Unlike some hospitals here they are quite free with their information and I was informed straight away that my heart, although slightly enlarged, was in very good shape but my pressures (that's the blood pressure in the pulmonary artery) were very high despite being on the Flolan.
Next stop was an ECG, again no queue, and once again it was good news. I have a steady strong rhythm with no sign of any problems.
I returned to the reception desk where I was given two pots and told to fill them, one was a sputum test, the other, well I think you can guess.
On to X-ray, no information given here but I was in and out really quickly and so onto bloods and lung function tests. This is where it all ground to a halt, well it had to happen sometime, and I had a thirty minute wait for bloods with another forty five minutes for lung function. I went into bloods expecting the usual two or three bottles to be taken. Sixteen bottles later, yes I kid you not, sixteen, a glass of water and well done I was back out in the waiting room where I had to sit for five minutes to prove I wasn't going to faint before nipping into lung function.
Lung function was where the good news stopped coming. My lungs are in a dreadful state with very little output in the blow tests. One machine kept flashing "Blockage! Check pipes" every time I blew into it but the it was my lungs and not the machine's pipe work that were at fault, or so the technician said, not sure if I really believe her. After all the huffing and puffing my SATs were through the floor at 70% so they stuffed an oxygen mask on me and made me wait until they recovered.
Back to reception and a short wait and then Nicky arrived to take us to see the consultant. Amazingly most of my test results were back and I was given a run down. Kidney, liver and heart function all normal. My weight is acceptable, phew! Generally I'm in "good nick" so then she chose to drop the bombshell. She wants me to have a transplant as soon as possible. Why? Well this is how she explained it.
At the moment the heart is in good shape, it is slightly enlarged but the size, shape and thickness is all within an acceptable range. The right ventricle, this is the important one for lung transplant patients, is very strong and shows no sign of stress. However, the unknown factor is how long it will stay that way. My PH is very aggressive, hence the rapid upgrade of medication over the last couple of years. Each medication has kept me stable for on average four to six months. I've been on Flolan for six months. At the moment things are OK and if they do start to go downhill again they still have the option of increasing the amount I'm getting. Unfortunately my lack of tolerance of the medication will be a limiting factor for this option and they may never be able to stabilise me again if I can't take the increase. Two years is no longer a viable waiting time and even twelve months would be risking it so she's going recommend transplant within six months. The reason being that if the right ventricle fails it fails really quickly and it doesn't take long to get past the point of being well enough for transplant. So it would be in my best interests to move quickly.
The one test that is still outstanding is one of the most important, and that is screening for antibodies. The more antibodies you have the greater your chance of rejection. The more pregnancies you've had the more antibodies you have so women tend to be turned down more often than men. It hasn't been a problem before but you do worry about it changing as infections can alter the count and I've had a lot of them this year. I will find out the results of this test next week. If all goes well the next step is a three day hospital stay so they can carry out a lot more tests, such as measuring my ribcage etc.
Obviously just because the consultant wants it done quickly doesn't mean it will be as I will still need to wait for a suitable donor, and I have to face up to the possibility that there will never be a match. At the moment though I'm still in with a chance and will be much further up the list than last time so I'm getting closer, at least I hope I am.
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