Oh my gosh, what a day!
I woke up early full of excitement and for once I was dressed and ready to go before either of my men. Andrew was coming along as a way of distraction before his finals, which start today. more on that later.
Despite hopping around like a maniac I actually had a good night's sleep. Of course it helped that I was quite busy on Sunday making two trips out in the car. One to pick Andrew and Svet up from Hatfield and a second later that evening to take Svet to the airport. I was sad for both of them that their time together had been so short but all is not lost. Andrew has a good few weeks between the end of his course and the start of his job so I'm sure a trip will be taken. Also when he starts work, not only will he be able to afford more trips but he will also have more time due to his shift patterns. We worked out that he might actually end up seeing Svet more than he's ever done.
I deliberately stayed up quite late on Sunday night in order to aid the sleep process and the tactic seems to have worked, along with a plate of chips with mayo just before going to bed. I was awake at quarter to seven and was dressed and ready by half eight but then had to kick my heels waiting for everyone else. We were not due at the hospital until eleven but I wanted to arrive early in the hope of getting the drug early. The drive in was quick and we only had one heart stopping moment. We'd just past the M25 turn off when my mobile rang. The caller was 'withheld' so it could either be work wondering where I am as they'd forgotten I was not in, Brompton cancelling me or Papworth, yeah right. I nearly dropped then phone when the caller announced herself as Anne from the transplant team at Papworth. Ever so briefly my heart soared only to be dash down by her next sentence, 'it's nothing urgent'. Anne was ringing to confirm that I was now a priority on the Lung list but keeping the option of heart/lung should one come up. So it was good news. However a different type of operation means using a different machine so they wanted me to come in to have a scan on my femoral arteries to check they are good enough for the life support machine they use with lung transplant. I will get a letter in the post with a date in the next two weeks. She reassured me that I could still get a transplant before the scan if one came up as they can't afford to reject a rare match.
Once we'd all calmed down the rest of the journey passed without incident and we arrive at the hospital half an hour early. First up were the usually tests, SAT's blood pressure, temperature, heart rate. Then I had an ECG, I was told I'd be getting a mini MOT so I wasn't surprised. After all that we were sent off for an early lunch and when we returned there was the drug. In pretty pink boxes. The pharmacist and specialist nurse then stood around while I made up and administered the drug. I did it in under ten minutes and both were very surprised at how quick and competent I was. The pharmacist said I could teach some of the nurses a thing or two.
Drug done I was then whisked off to have an ECHO. Peter came with me but Andrew stayed behind. He had some last minute revising to do and said he would just be distracted at home so came with us as, 'hospitals are boring so I won't have any choice, there's nothing else to do'. It was while I was waiting for my ECHO that I met Yatin Patel, a fellow PH patient, who was also in for a change over. We were both very excited and really looking forward to the extra freedom. It is always lovely to meet people you know through the PH forums and get to know them properly.
The ECHO was not a good experience. I foolishly agreed to a trainee, I must have been in a very good mood as I usually say no, and she was not the best. She had a problem finding my mitral valve so after asking me whether I was 'difficult to scan', how the hell should I know, I just lie there, went for a more physical approach. She started pressing really hard and I gritted my teeth vowing not to complain as I just wanted it over with. However when she rammed the probe between two ribs I complained very loudly indeed. Her mentor came over and began to talk her through ways she could view this valve without injuring the patient. In the end, after ninety excruciating minutes I was allowed to go back to the ward. This morning I have a bruise on my ribs and I'm not happy.
Back on the ward I waited for the results and when my nurse specialist did arrive she came with gifts. A load of labels to stick on my cassettes, so I can keep track of when I make them up, two lunch boxes to keep them in the fridge, apparently you can't just dump them among your tomatoes, and a very heavy box of Sodium Chloride solution with which to mix the drug. She told me that there had been some changes to my ECHO but she needed to see the full report before she could tell how significant they were. And so I was sent on my way. I've been told to rest for twenty four hours just in case of any adverse reaction so I'm at home doing just that.
The decision to increase my dose has been delayed. The reason being is that I'd become used to Flolan, as evidenced by my decreasing nausea. As you become used to something then the effectiveness decreases. Ultimately increasing the Flolan would probably not have worked long term. Veletri, though essentially the same drug, has a different composition and so it may, just may sort me out without needing the increase. If I'm still feeling poorly in a couple of weeks then I'm to contact Carl and we'll go for the increase.I have to say my breathing does seem a little easier today and my nausea is back, though not too bad, so something is happening. Of course it will take a while before I know for sure whether this is a blip, after having been messed about so much yesterday, or an actual improvement.
On the plus side I now only need to change my cassette once every twenty four hours, my line every forty eight hours and the dreaded bung every week. I still need to change my dressing twice a week though as it is at the line site that any infection will first show and I still need to keep a close eye on that. However the reduced messing about with the line means a reduced risk of infection so that has to be good.
Today I am going to have to do some work however and make up enough cassettes to last until Sunday. On Sunday I will then make up a week's worth and from there I should be able to work out some sort of routine. The big plus is that if out and about, there will no longer be the big rush to get home in time to change the meds. Each cassette, for my dosage, has a buffer of approximately twelve hours, so if caught in a jam I can go up to twelve hours without needing to change the cassette.Brilliant!
My one big worry at the moment is Healthcare at Home. They can't deliver an accurate order when you've been on the same drug for three years. How they are going to cope with a change I don't know, especially as I'm due a delivery on Friday. The last thing I want is a month's worth of Flolan. The hospital is going to contact them and get them to replace the Flolan with the Veletri but I'm not holding out much hope. At least I did leave the hospital with fourteen days worth so there is time to sort things out.
So that's about it. All I have to do today is relax and monitor any changes but so far, so good. Right time to sort out my equipment for this afternoon. More on Friday.
I woke up early full of excitement and for once I was dressed and ready to go before either of my men. Andrew was coming along as a way of distraction before his finals, which start today. more on that later.
I deliberately stayed up quite late on Sunday night in order to aid the sleep process and the tactic seems to have worked, along with a plate of chips with mayo just before going to bed. I was awake at quarter to seven and was dressed and ready by half eight but then had to kick my heels waiting for everyone else. We were not due at the hospital until eleven but I wanted to arrive early in the hope of getting the drug early. The drive in was quick and we only had one heart stopping moment. We'd just past the M25 turn off when my mobile rang. The caller was 'withheld' so it could either be work wondering where I am as they'd forgotten I was not in, Brompton cancelling me or Papworth, yeah right. I nearly dropped then phone when the caller announced herself as Anne from the transplant team at Papworth. Ever so briefly my heart soared only to be dash down by her next sentence, 'it's nothing urgent'. Anne was ringing to confirm that I was now a priority on the Lung list but keeping the option of heart/lung should one come up. So it was good news. However a different type of operation means using a different machine so they wanted me to come in to have a scan on my femoral arteries to check they are good enough for the life support machine they use with lung transplant. I will get a letter in the post with a date in the next two weeks. She reassured me that I could still get a transplant before the scan if one came up as they can't afford to reject a rare match.
Drug done I was then whisked off to have an ECHO. Peter came with me but Andrew stayed behind. He had some last minute revising to do and said he would just be distracted at home so came with us as, 'hospitals are boring so I won't have any choice, there's nothing else to do'. It was while I was waiting for my ECHO that I met Yatin Patel, a fellow PH patient, who was also in for a change over. We were both very excited and really looking forward to the extra freedom. It is always lovely to meet people you know through the PH forums and get to know them properly.
The ECHO was not a good experience. I foolishly agreed to a trainee, I must have been in a very good mood as I usually say no, and she was not the best. She had a problem finding my mitral valve so after asking me whether I was 'difficult to scan', how the hell should I know, I just lie there, went for a more physical approach. She started pressing really hard and I gritted my teeth vowing not to complain as I just wanted it over with. However when she rammed the probe between two ribs I complained very loudly indeed. Her mentor came over and began to talk her through ways she could view this valve without injuring the patient. In the end, after ninety excruciating minutes I was allowed to go back to the ward. This morning I have a bruise on my ribs and I'm not happy.
Back on the ward I waited for the results and when my nurse specialist did arrive she came with gifts. A load of labels to stick on my cassettes, so I can keep track of when I make them up, two lunch boxes to keep them in the fridge, apparently you can't just dump them among your tomatoes, and a very heavy box of Sodium Chloride solution with which to mix the drug. She told me that there had been some changes to my ECHO but she needed to see the full report before she could tell how significant they were. And so I was sent on my way. I've been told to rest for twenty four hours just in case of any adverse reaction so I'm at home doing just that.
On the plus side I now only need to change my cassette once every twenty four hours, my line every forty eight hours and the dreaded bung every week. I still need to change my dressing twice a week though as it is at the line site that any infection will first show and I still need to keep a close eye on that. However the reduced messing about with the line means a reduced risk of infection so that has to be good.
Today I am going to have to do some work however and make up enough cassettes to last until Sunday. On Sunday I will then make up a week's worth and from there I should be able to work out some sort of routine. The big plus is that if out and about, there will no longer be the big rush to get home in time to change the meds. Each cassette, for my dosage, has a buffer of approximately twelve hours, so if caught in a jam I can go up to twelve hours without needing to change the cassette.Brilliant!
My one big worry at the moment is Healthcare at Home. They can't deliver an accurate order when you've been on the same drug for three years. How they are going to cope with a change I don't know, especially as I'm due a delivery on Friday. The last thing I want is a month's worth of Flolan. The hospital is going to contact them and get them to replace the Flolan with the Veletri but I'm not holding out much hope. At least I did leave the hospital with fourteen days worth so there is time to sort things out.
So that's about it. All I have to do today is relax and monitor any changes but so far, so good. Right time to sort out my equipment for this afternoon. More on Friday.
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