My delivery of drugs arrived this morning, OMG!
Yesterday I didn't feel to hot. I had no appetite, a slightly upset tummy and felt totally exhausted. I was warned this might happen as the drug dose increased but it was still a shock to feel poorly again. A visit to MK cheered me up though and I actually ended up need a chocolate hit, that Crunchie was delicious. I'm still not well enough to walk around a place as big as the shopping centre so used the wheelchair for hopefully the last time. I went on a bit of a spree stocking up in Lush and getting a lovely bag that will not just carry my pump but also a few other bits and pieces such as my phone and purse without being the size of an aircraft carrier. I really enjoyed my afternoon out but once home I collapsed on the bed and slept for hours.
Today I'm feeling better, the sicky feeling has gone and I'm eating but not much. I feel more awake but still needed an afternoon nap. I used the tennis as an excuse to lounge in front of the TV for most of the day. I'm in that irritating half way stage where I don't feel ill enough to ignore everything and let the others do all the work but not well enough to take over and start fixing it myself. Arrrggghhh, the frustration!
Someone who is no longer frustrated, or huge, congratulations to Amie on the birth of her beautiful son. Can't wait to meet him.
As mentioned at the beginning of this post my drug delivery arrived in five huge boxes. Stacked one on top of the other they reach the ceiling. I really don't know how we are going to store all this stuff. No one warned me when I agreed to this treatment that I'd have to get an extension built. I feel a trip to IKEA coming on.
Despite the problems with storage I think I have adapted to my new routine very well. It is certainly less intrusive than the three hourly routine of the Iloprost. I've swapped over my drug prep and line change to the evening as I have more time and feel less rushed. Doing it in the morning always makes me feel rushed, especially if there is somewhere I need to be during the day, such as a hospital appointment for instance. I've got it down to forty minutes now and am only double checking rather than triple checking. I'm still changing the dressing in the morning after my shower/bath. I am paranoid about getting the site wet as that is the most common cause of infection. I tend to have my shower and then rip the dressing off immediately afterwards and wash the area with a sterile cleaner before redressing with sterile gauze. I'm sure I will get more relaxed about it eventually. The changing over of the pump and cassette is now a ten minute procedure, something I will be able to do at work without any problems. I think the trick is to be relaxed but not complacent.
Going out with the pump hasn't caused me to much grief so far. I have only caught one person staring at me when my line escaped from my bag and hung down onto my leg. I have developed a method of coiling the line and tucking it into my bag or jeans pocket. It does escape from time to time but mostly, apart from a couple of inches between me and the bag, it remains hidden. Again I'm sure it is something I'll get better at.
I haven't had any instances of throwing the pump across the room or feeling angry or sorry for myself yet. This surprises me considering the mini breakdown I had in the hospital. Maybe it is to new, maybe I am so grateful to feel better that I have just accepted this is the way it must be. Who knows? I'm sure there will be more mini breakdowns, there has to be but at the moment I am content with my lot. As a close friend told me, anything is better than not being here. Of course not being here is now closer than it was. I've been warned that stopping the pump could result in death within a few hours.The drug is so powerful that a sudden stop will mean my body will react to not having it and I will go into a PH crisis that I may not recover from. That is really scary. Also when this drug stops working, as it inevitably will over time, then there are no other options apart from transplant. This has obviously got me thinking about what I want to happen afterwards. I have already decided that I want the Time Warp at the funeral. That song always makes me want to get up and dance and I think it would be nice to have a bit of laughter in the church. As for the rest of it well I'm still thinking about that. One thing I am really definite on though is to be cremated and have my ashes buried with my son William. That will upset my mum who would like me buried in Wales but my family is here now, besides as I keep telling her, I intend to outlive her.
I know all that sounds depressing and upsetting but it's not, not really. Unlike most people I know what is coming and so, being the control freak that I am, I can plan exactly what I want. I call that a bonus.
Read in paper that the donor register has now hit an all time high of 18 million in the UK. This is brilliant news, there is more hope for people like me than there ever was but more donors are still needed as even 18 million only equates to one in three adults. At the same time news of successful stem cell treatment is also being reported on the PHA website. So there is hope out there, I just wish it would hurry up.
Yesterday I didn't feel to hot. I had no appetite, a slightly upset tummy and felt totally exhausted. I was warned this might happen as the drug dose increased but it was still a shock to feel poorly again. A visit to MK cheered me up though and I actually ended up need a chocolate hit, that Crunchie was delicious. I'm still not well enough to walk around a place as big as the shopping centre so used the wheelchair for hopefully the last time. I went on a bit of a spree stocking up in Lush and getting a lovely bag that will not just carry my pump but also a few other bits and pieces such as my phone and purse without being the size of an aircraft carrier. I really enjoyed my afternoon out but once home I collapsed on the bed and slept for hours.
Today I'm feeling better, the sicky feeling has gone and I'm eating but not much. I feel more awake but still needed an afternoon nap. I used the tennis as an excuse to lounge in front of the TV for most of the day. I'm in that irritating half way stage where I don't feel ill enough to ignore everything and let the others do all the work but not well enough to take over and start fixing it myself. Arrrggghhh, the frustration!
Someone who is no longer frustrated, or huge, congratulations to Amie on the birth of her beautiful son. Can't wait to meet him.
As mentioned at the beginning of this post my drug delivery arrived in five huge boxes. Stacked one on top of the other they reach the ceiling. I really don't know how we are going to store all this stuff. No one warned me when I agreed to this treatment that I'd have to get an extension built. I feel a trip to IKEA coming on.
Despite the problems with storage I think I have adapted to my new routine very well. It is certainly less intrusive than the three hourly routine of the Iloprost. I've swapped over my drug prep and line change to the evening as I have more time and feel less rushed. Doing it in the morning always makes me feel rushed, especially if there is somewhere I need to be during the day, such as a hospital appointment for instance. I've got it down to forty minutes now and am only double checking rather than triple checking. I'm still changing the dressing in the morning after my shower/bath. I am paranoid about getting the site wet as that is the most common cause of infection. I tend to have my shower and then rip the dressing off immediately afterwards and wash the area with a sterile cleaner before redressing with sterile gauze. I'm sure I will get more relaxed about it eventually. The changing over of the pump and cassette is now a ten minute procedure, something I will be able to do at work without any problems. I think the trick is to be relaxed but not complacent.
Going out with the pump hasn't caused me to much grief so far. I have only caught one person staring at me when my line escaped from my bag and hung down onto my leg. I have developed a method of coiling the line and tucking it into my bag or jeans pocket. It does escape from time to time but mostly, apart from a couple of inches between me and the bag, it remains hidden. Again I'm sure it is something I'll get better at.
I haven't had any instances of throwing the pump across the room or feeling angry or sorry for myself yet. This surprises me considering the mini breakdown I had in the hospital. Maybe it is to new, maybe I am so grateful to feel better that I have just accepted this is the way it must be. Who knows? I'm sure there will be more mini breakdowns, there has to be but at the moment I am content with my lot. As a close friend told me, anything is better than not being here. Of course not being here is now closer than it was. I've been warned that stopping the pump could result in death within a few hours.The drug is so powerful that a sudden stop will mean my body will react to not having it and I will go into a PH crisis that I may not recover from. That is really scary. Also when this drug stops working, as it inevitably will over time, then there are no other options apart from transplant. This has obviously got me thinking about what I want to happen afterwards. I have already decided that I want the Time Warp at the funeral. That song always makes me want to get up and dance and I think it would be nice to have a bit of laughter in the church. As for the rest of it well I'm still thinking about that. One thing I am really definite on though is to be cremated and have my ashes buried with my son William. That will upset my mum who would like me buried in Wales but my family is here now, besides as I keep telling her, I intend to outlive her.
I know all that sounds depressing and upsetting but it's not, not really. Unlike most people I know what is coming and so, being the control freak that I am, I can plan exactly what I want. I call that a bonus.
Read in paper that the donor register has now hit an all time high of 18 million in the UK. This is brilliant news, there is more hope for people like me than there ever was but more donors are still needed as even 18 million only equates to one in three adults. At the same time news of successful stem cell treatment is also being reported on the PHA website. So there is hope out there, I just wish it would hurry up.
No comments:
Post a Comment