I don't want to go, I don't want to go, I don't want to go, I don't want to go. Don't make me go, don't make me go, don't make me go.......... those were the thoughts going through my head yesterday. Along with that feeling in your stomach that feels really heavy, and flip flops around.
Yesterday was a Harefield hospital day, I had an appointment at the Transplant clinic & I was not looking forward to it. So with trepidation we set off. The journey wasn't too bad until I read my appointment letter and realised I'd got the time wrong, instead of the 10.45 I thought it was it was 10.15!!! we were never going to make it on time. But not to worry I phoned the transplant clinic and told them I was going to be late which wasn't a problem.
After arriving at the hospital it's off to have blood tests, ten tubes, and see the transplant co-ordinator to give me the slips for all of my tests. First Echo, then lung function, followed by chest x-ray then finally ECG. All went smoothly. Then off to the friends of Harefield hospital Café for lunch.
Then the wait to see the doctor, the appointment system is basically your appointment could be anytime between 2pm & 5pm but they like you to be in the waiting room from 1.30 onwards. Everyone is given the same time and you just sit and wait, and wait , and wait until you are called. At about 3.30 the transplant co-ordinator came out and said I needed a liver scan as one of my blood tests came back a bit funny. So off I went for a liver scan. All was fine with that and what they were concerned about was my bilirubin levels had been high, if they had of looked at my notes they would have seen that I have Gilberts syndrome that just means I have higher than normal levels of bilirubin.
Then back to transplant clinic to wait again to see the doctor. I have to admit that I was really anxious about seeing the transplant consultant. In the past I've found the transplant consultant overly eager to give me a transplant. We were finally called to see her and she asked me what my thoughts on transplant were.
Now this decision has taken me a while to come to terms with. But the decision I've made is that i'm not mentally ready for transplant, I don't know when, or even if I ever will be ready. Also even though I have severe Pulmonary Hypertension compared to others I really don't have many symptoms. So I'd be swopping mild symptoms that I can live with for problems which are unknown. I fully understand the consequences of not going on the list now, at any point I could become too ill for transplant. After I explained this to the consultant she was completely on my side. They are going to monitor me every six months and at any point I can change my mind and go on the list.
I feel like a huge weight has been lifted off my shoulders, I know i'm only delaying the decision, but I know i'll know when i'm mentally ready to go on the list, and I just can't go on the list until that point (which the consultant agreed with). So for now i'm not going on the list & i'm going to plod on for a while longer.
I've probably completely bored you by now so i'll sign off for now.
Take care Blogsphere x
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