To say this hasn't been my week would be something of an understatement.
Over the weekend I had the emotional rollercoaster that is a false alarm for transplant. Yesterday I was back at work and got some lovely hugs from colleagues. This morning I wake up covered in blood. You know, just an average occurrence in anyone's life.
Joking aside I knew I was in big trouble for several reasons. A leaking line is always a big infection risk. Blood coming out of the line means nothing is going in so I was probably not getting the dose of veletri I was supposed to be getting. Now a lot of people do not realise how crucial this drugs is. Basically it keeps me alive. To be without it for a short time causes massive problems and anything over 24 hours would kill me as all my veins and arteries slowly closed up. The first thing I did, after screaming, was clean the connectors with alcohol and wrap them in sterile dressings. I then checked the site entrance for any signs of damage or infection. Nothing there. I checked the pump and it was still going. So the logical conclusion was either a blockage or damage to the internal line. So I did what has been drummed into me since going on IV medication and called the Brompton for advice.
I got through to the PH ward and a nurse on the other end hadn't a clue what I was talking about. Her English was very poor so I don't know if she actually understood what I was saying. I was passed on to another nurse who passed me onto the cardiac on call registrar. It was 0630 so none of the regular team were in yet. I explained the problem. He asked for my hospital number and looked me up on the computer. He then said he couldn't help and it would be best if I waited to talk to the PH team when they got in. No one seemed to grasp that this was an emergency, well to me anyway.
By 0830, having failed to get hold of anyone and still bleeding Peter had enough and we set out for London. Half way down the motorway Carl called in response to my increasingly frantic messages. Yes this was definitely an emergency and he would be waiting for me on the ward.
When I arrived it wasn't just Carl but several doctors waiting for me. The first thing they did was check my pressures etc to see if I was having any bad effects. Thankfully I was fine and everything was normal. They then examined the line very carefully and discovered a spilt in one of the connectors. Between the line attached to me and the line attached to the pump I have a connector that acts as a one way valve. This had fractured. We changed the connector and then hung around for several hours to check the result. Now the pump pressure had been restored the blood was pushed back along the line and it appeared the problem was solved, right up to the moment I hit the M1 on the way home.
My machine alarm went off indicating high pressure, which meant the drug was not getting through. I was driving so Peter reset the machine and it did it again and kept doing it every time a dose was delivered. Peter called Carl. He suggested I get home and change everything again, including the pump to see if that would help. It didn't and we were on the road again going back to London with the alarm going off all the way. I was in tears because I just could not understand why all these bad things were happening to me all at once. I felt like I was in a nightmare.
Ten minutes from the hospital the alarm stopped and the pump began to operate normally. When I got to the ward the doctors decided the best thing to do was to keep the pump on and keep me in overnight to see how it behaves. If all is well I can go home (again) tomorrow. If not then they will do what they'd planned tonight which would be to aspirate and flush the line several times to try and move the blockage. They think I might have developed a small clot in the line as a result of this morning's problems and that by keeping the pump going I've actually managed to clear it myself. They can't be sure of course and may just flush it tomorrow anyway as a precaution.
I am relieved that the pump seems to be working again now but I don't think I'll ever be as sure of it as I was. I'm also extremely emotional tonight and keep bursting into tears. I don't know how much more I can take to be honest. People keep telling me to 'be strong' but I've been 'strong' for so long now I don't know whether I have strength to keep being 'strong'. I know I seem to bounce back from every set back but one day I won't be able too and I'm not sure if this isn't that time.
All I want is a worry free, normalish life. Is that really too much to ask? And before anyone goes on about being 'tested' well I think I've been tested beyond endurance now and would like to return to a quite life now, thank you very much.
Oh! And the icing on the Cake? I've been on the transplant list seventeen months tomorrow.
Over the weekend I had the emotional rollercoaster that is a false alarm for transplant. Yesterday I was back at work and got some lovely hugs from colleagues. This morning I wake up covered in blood. You know, just an average occurrence in anyone's life.
Joking aside I knew I was in big trouble for several reasons. A leaking line is always a big infection risk. Blood coming out of the line means nothing is going in so I was probably not getting the dose of veletri I was supposed to be getting. Now a lot of people do not realise how crucial this drugs is. Basically it keeps me alive. To be without it for a short time causes massive problems and anything over 24 hours would kill me as all my veins and arteries slowly closed up. The first thing I did, after screaming, was clean the connectors with alcohol and wrap them in sterile dressings. I then checked the site entrance for any signs of damage or infection. Nothing there. I checked the pump and it was still going. So the logical conclusion was either a blockage or damage to the internal line. So I did what has been drummed into me since going on IV medication and called the Brompton for advice.
I got through to the PH ward and a nurse on the other end hadn't a clue what I was talking about. Her English was very poor so I don't know if she actually understood what I was saying. I was passed on to another nurse who passed me onto the cardiac on call registrar. It was 0630 so none of the regular team were in yet. I explained the problem. He asked for my hospital number and looked me up on the computer. He then said he couldn't help and it would be best if I waited to talk to the PH team when they got in. No one seemed to grasp that this was an emergency, well to me anyway.
By 0830, having failed to get hold of anyone and still bleeding Peter had enough and we set out for London. Half way down the motorway Carl called in response to my increasingly frantic messages. Yes this was definitely an emergency and he would be waiting for me on the ward.
When I arrived it wasn't just Carl but several doctors waiting for me. The first thing they did was check my pressures etc to see if I was having any bad effects. Thankfully I was fine and everything was normal. They then examined the line very carefully and discovered a spilt in one of the connectors. Between the line attached to me and the line attached to the pump I have a connector that acts as a one way valve. This had fractured. We changed the connector and then hung around for several hours to check the result. Now the pump pressure had been restored the blood was pushed back along the line and it appeared the problem was solved, right up to the moment I hit the M1 on the way home.
My machine alarm went off indicating high pressure, which meant the drug was not getting through. I was driving so Peter reset the machine and it did it again and kept doing it every time a dose was delivered. Peter called Carl. He suggested I get home and change everything again, including the pump to see if that would help. It didn't and we were on the road again going back to London with the alarm going off all the way. I was in tears because I just could not understand why all these bad things were happening to me all at once. I felt like I was in a nightmare.
Ten minutes from the hospital the alarm stopped and the pump began to operate normally. When I got to the ward the doctors decided the best thing to do was to keep the pump on and keep me in overnight to see how it behaves. If all is well I can go home (again) tomorrow. If not then they will do what they'd planned tonight which would be to aspirate and flush the line several times to try and move the blockage. They think I might have developed a small clot in the line as a result of this morning's problems and that by keeping the pump going I've actually managed to clear it myself. They can't be sure of course and may just flush it tomorrow anyway as a precaution.
I am relieved that the pump seems to be working again now but I don't think I'll ever be as sure of it as I was. I'm also extremely emotional tonight and keep bursting into tears. I don't know how much more I can take to be honest. People keep telling me to 'be strong' but I've been 'strong' for so long now I don't know whether I have strength to keep being 'strong'. I know I seem to bounce back from every set back but one day I won't be able too and I'm not sure if this isn't that time.
All I want is a worry free, normalish life. Is that really too much to ask? And before anyone goes on about being 'tested' well I think I've been tested beyond endurance now and would like to return to a quite life now, thank you very much.
Oh! And the icing on the Cake? I've been on the transplant list seventeen months tomorrow.
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