Hello strangers!
I feel really bad for neglecting the blog but things have been a bit manic recently!
So a quick update....
On the kidney front, things are going well, results are all going in the right direction and more importantly I'm starting to feel the benefits! I have had 4 doses of IV Iron to boost my Hemoglobin levels which are low. This seems to have helped, it's still not normal but it is much improved, I am also meant to have a drug called aranesp which will also build up my HB but my blood pressure has been too high for me to have this so we have to wait for that to sort itself before I can start on the aranesp. I have been put on 2 different blood pressure tablets to try and lower it but the docs think the main reason for it being high is the amount of fluid I have on board. At my worst I was 10kg over my dry weight!!!! Luckily I have been put on water tablets (frusimide) to get some of the fluid off, this is doing the trick and I can finally see my ankles!!! Sadly it won't do anything for my steroid "Moonface" but hey hopefully that will go down when the steroids are reduced, and anyway its worth it!
The downside to this is I'm going to the toilet every 15minutes, meaning I can't go out much, but hopefully I won't be on them for too long and I'll be able to get out and about again soon!
I went to the hospital today and I didn't even have to wait around for my blood results, which is great!!! They said they would ring... they haven't but I'm not worried as no news is good news! They told me I don't need to go back till Thursday so I'm down to twice weekly visits which is great! I've also been booked in for a little operation (day case) on 11th December to get the stent removed out of Ivy (my kidney). This will be done under General Anesthetic, but from start to finish should only take half an hour. Also going for an ultrasound scan on my fistula on 15th Dec, even though I'm not using it anymore it still has to be checked to make sure it's still working and not narrowing again.
In other news the Battlefront campaign is really going full steam ahead, thanks to Emily and "Holly's Helpers" to find out more click here. I also have a bebo page up and running so to have a nosey at that too click here and add me as a friend! All ideas are under wraps at the minute but I'll let you know as soon as possible about any developments!
I'm also busy trying to do a piece of uni work so I don't get to far behind! So its all go, go, go at the minute, I don't know how I managed to fit in dialysis before, the freedom is great! I can't believe its only just over 5 weeks and the difference is noticable already.
I promise to update this more often! Thanks for all your supportive messages! x
Showing posts with label ultrasound. Show all posts
Showing posts with label ultrasound. Show all posts
Monday, 1 December 2008
Thursday, 2 October 2008
Hi everyone! Wow what a busy few weeks... lots of things going on!
I'm enjoying being an Auntie and have been round to visit Mum, Dad and Baby lots. Its actually my Bro's birthday today so bought him a cake from Abigail saying "Happy Birthday Daddy, Lots of Love Abigail!"
The first bit of news is that Live Life Then Give Life won the Charity Times Award for "Campaigning Team of the year!" So big congrats to them, they do a great job of raising awareness of organ donation through talks and the media etc and supporting people who are waiting for a transplant (I know this first hand) The judges at the awards said they were"an outstanding campaign made up of many effective and innovative strands and approaches, achieving great success”! I say here here!
In other news the Battlefront campaign (on organ donation) is going great and I have been at number one from about 2 days after I uploaded it which is fantastic, so if you have voted, thank you I really appreciate it. Heres a bit more about the campaign...
"Did you know that 1000 people die every year because of the shortage of organ donors in the UK? In 2005 I went on the kidney transplant waiting list after a sudden illness caused kidney failure. I'm now kept alive by a dialysis machine which I’m attached to 3 times each week. For many others on the waiting list this isn't an option - for them an organ transplant is a matter of life and death. My campaign will raise awareness of organ donation and encourage more people to think, talk and do something about it. As a result, this campaign will save and transform lives, perhaps even my own. Waiting is tough! However I have seen the difference a transplant can make and this gives me hope for the future that I will be able to do the things I have dreamt of."
I have had loads of comments which are lovely to read too, the entries have closed now but you can keep voting until the 8th so keep going if your computer allows you to do it more than once! If you haven't already done so please vote here. An article appeared on a local website about my campaign, you can read that here. I get a phonecall on the 9th/10th to let me know if I have made it into the top 10 and if so then its over to the judges. So I'll keep you updated!
I also started back to uni this week, Its scary to think how the time has flown! I can't believe I'm in my 3rd year, doing my dissertation! Next year I'll be out in the scary wide world! So this is were the hardwork starts!
On Saturday me and my folks went to Blackpool for the day which was lovely, we went in the tower to see the circus which was fab but some of the acrobats left my heart in my throat!
Me and Mum on the Pier!
Me and Dad on the Pier!
On sunday me and my friend Hanne along with her Daughter Ellie went to the open day at the local firestation, we pretended that we were taking Ellie but in reality we were looking for hunky fireman! We were really disappointed as they were all old! Ellie enjoyed the afternoon though and even got a sit in the fire engine!
Me and Ellie in the Fire engine!
On Tuesday night I met with the lovely Emma and Brad from Live Life Then Give Life! We had a lovely evening of chat (some intellectual and some not so) and a meal! We talked about LLTGL and the battlefront campaign, thanks for all your help Em. I have invited them to come up for a weekend in the future (Em if your reading this, I hope you take us up on the offer.) It feels like we have known eachother for ages and yet have only met twice, It would be great to spend some more time together! Heres some pics....
Emma, Me and Brad
As for my Fistula its still a bit sore on needling and you can still feel the stent under the skin, I will be asking the surgeon about this when I go and get it scanned on the 13th. I'm also seeing my dialysis consultant that week on the 15th so I'll see how everything is ticking along then. This months clearance was 75% which is good for 3 hours and the highest its ever been for me.
Sorry this blog has been a bit bitty with news...
I'm enjoying being an Auntie and have been round to visit Mum, Dad and Baby lots. Its actually my Bro's birthday today so bought him a cake from Abigail saying "Happy Birthday Daddy, Lots of Love Abigail!"
The first bit of news is that Live Life Then Give Life won the Charity Times Award for "Campaigning Team of the year!" So big congrats to them, they do a great job of raising awareness of organ donation through talks and the media etc and supporting people who are waiting for a transplant (I know this first hand) The judges at the awards said they were"an outstanding campaign made up of many effective and innovative strands and approaches, achieving great success”! I say here here!
In other news the Battlefront campaign (on organ donation) is going great and I have been at number one from about 2 days after I uploaded it which is fantastic, so if you have voted, thank you I really appreciate it. Heres a bit more about the campaign...
"Did you know that 1000 people die every year because of the shortage of organ donors in the UK? In 2005 I went on the kidney transplant waiting list after a sudden illness caused kidney failure. I'm now kept alive by a dialysis machine which I’m attached to 3 times each week. For many others on the waiting list this isn't an option - for them an organ transplant is a matter of life and death. My campaign will raise awareness of organ donation and encourage more people to think, talk and do something about it. As a result, this campaign will save and transform lives, perhaps even my own. Waiting is tough! However I have seen the difference a transplant can make and this gives me hope for the future that I will be able to do the things I have dreamt of."
I have had loads of comments which are lovely to read too, the entries have closed now but you can keep voting until the 8th so keep going if your computer allows you to do it more than once! If you haven't already done so please vote here. An article appeared on a local website about my campaign, you can read that here. I get a phonecall on the 9th/10th to let me know if I have made it into the top 10 and if so then its over to the judges. So I'll keep you updated!
I also started back to uni this week, Its scary to think how the time has flown! I can't believe I'm in my 3rd year, doing my dissertation! Next year I'll be out in the scary wide world! So this is were the hardwork starts!
On Saturday me and my folks went to Blackpool for the day which was lovely, we went in the tower to see the circus which was fab but some of the acrobats left my heart in my throat!
Me and Mum on the Pier!
Me and Dad on the Pier!On sunday me and my friend Hanne along with her Daughter Ellie went to the open day at the local firestation, we pretended that we were taking Ellie but in reality we were looking for hunky fireman! We were really disappointed as they were all old! Ellie enjoyed the afternoon though and even got a sit in the fire engine!
Me and Ellie in the Fire engine!
Emma, Me and Brad
Me and Emma
On the health front I've not been to bad, a few weeks back the nurses at dialysis were a bit concerned about my high pulse. They told me to go to my GP which I did, she checked it and it wasn't too bad but ordered a TFT blood test (thyroid function test) which came back normal, so everything is fine. I started getting a bit worried when one of the dialysis nurses said "Have you ever seen a heart consultant!"As for my Fistula its still a bit sore on needling and you can still feel the stent under the skin, I will be asking the surgeon about this when I go and get it scanned on the 13th. I'm also seeing my dialysis consultant that week on the 15th so I'll see how everything is ticking along then. This months clearance was 75% which is good for 3 hours and the highest its ever been for me.
Sorry this blog has been a bit bitty with news...
Monday, 21 July 2008
I have uploaded some of the pictures from my trip to Ireland, click on the links below if you want to have a nosy!
Ireland - Part 1
Ireland - Part 2 (The Wedding)
Ireland - Part 3
Today I went for the ultrasound scan on my fistula, the doc went really quiet so I could tell all was not well. Hmmm interesting he said and I said interesting good or interesting bad. He replied well I'm not going to say just yet so that confirmed my suspicions. Whilst he was scanning my arm he listened to the flow of the blood through my fistula, there was also a sound of the water pipes in the hospital in the background so Mum and Dad were a bit confused as to what sound was my fistula and which was the water as they both sounded similar.
He then explained that the narrowing that had previously been widened has returned and he was worried that it had returned so quickly. So I need to go in to get ballooned again but this time I'm also going to have a stent inserted to keep it open to ensure it doesn't narrow again! So not the best news but hey it can't be helped. Here is a pic of what a stent looks like incase you're interested... The one I will be having will be about 4cm long and when it is opened it will spring out so its 1cm wide.
I may have to keep going back every so often for the stent to be ballooned aswell so the problem won't be completely solved. There is also a slightly higher risk of infection in my fistula after having the stent inserted so I'll just have to be careful about keeping it clean. I wasn't surprised to hear that I would need this done as the last time he wasn't completely convinced that it had been totally sucessful, and I could also tell myself that my arm was getting bigger again (although my mum kept telling me that it was just me, probably to make me feel better.)
I then asked the doctor the really important questions such as will it hurt more than just having it ballooned and will I beep going through airport security if I have the stent inserted, the answer to both questions was no! He then said that there were two choices of stent, a covered one and an uncovered one (not completely sure of the difference) but they are doing some trials to compare the covered one to the uncovered and measure their effectiveness. He asked me if I wanted to be part of the trial, I'm not bothered either way and even if I say yes there is no guarantee I will receive the covered one as they pick an envelope at the beginning of the procedure and whichever envelope is opened that's the stent they use.
After the scan and the chat with the Doc I went up to the transplant ward to see a fellow dialysis patient who received a transplant 10 days ago. She had been waiting for around 5 years and although she has an infection at the moment is looking absolutely marvellous, the change in her colour in that short amount of time was amazing. So hopefully things will continue to improve and she will be out and about soon.
Finally (as I think I have waffled on enough in this post) whilst I was away on holiday I appeared in my local midweek newspaper and on an online newspaper promoting National Transplant Week (Thanks to Em and Em from LLTGL for the press release.) If you want to see the article click here.
So that's all the news really, I don't have to decide about the trial till the day of the procedure and he said he would have more of a chat about it to me then. They'll be in touch soon with a date for when it's going to go ahead.
Ireland - Part 1
Ireland - Part 2 (The Wedding)
Ireland - Part 3
Today I went for the ultrasound scan on my fistula, the doc went really quiet so I could tell all was not well. Hmmm interesting he said and I said interesting good or interesting bad. He replied well I'm not going to say just yet so that confirmed my suspicions. Whilst he was scanning my arm he listened to the flow of the blood through my fistula, there was also a sound of the water pipes in the hospital in the background so Mum and Dad were a bit confused as to what sound was my fistula and which was the water as they both sounded similar.
He then explained that the narrowing that had previously been widened has returned and he was worried that it had returned so quickly. So I need to go in to get ballooned again but this time I'm also going to have a stent inserted to keep it open to ensure it doesn't narrow again! So not the best news but hey it can't be helped. Here is a pic of what a stent looks like incase you're interested... The one I will be having will be about 4cm long and when it is opened it will spring out so its 1cm wide.
I may have to keep going back every so often for the stent to be ballooned aswell so the problem won't be completely solved. There is also a slightly higher risk of infection in my fistula after having the stent inserted so I'll just have to be careful about keeping it clean. I wasn't surprised to hear that I would need this done as the last time he wasn't completely convinced that it had been totally sucessful, and I could also tell myself that my arm was getting bigger again (although my mum kept telling me that it was just me, probably to make me feel better.)
I then asked the doctor the really important questions such as will it hurt more than just having it ballooned and will I beep going through airport security if I have the stent inserted, the answer to both questions was no! He then said that there were two choices of stent, a covered one and an uncovered one (not completely sure of the difference) but they are doing some trials to compare the covered one to the uncovered and measure their effectiveness. He asked me if I wanted to be part of the trial, I'm not bothered either way and even if I say yes there is no guarantee I will receive the covered one as they pick an envelope at the beginning of the procedure and whichever envelope is opened that's the stent they use.
After the scan and the chat with the Doc I went up to the transplant ward to see a fellow dialysis patient who received a transplant 10 days ago. She had been waiting for around 5 years and although she has an infection at the moment is looking absolutely marvellous, the change in her colour in that short amount of time was amazing. So hopefully things will continue to improve and she will be out and about soon.
Finally (as I think I have waffled on enough in this post) whilst I was away on holiday I appeared in my local midweek newspaper and on an online newspaper promoting National Transplant Week (Thanks to Em and Em from LLTGL for the press release.) If you want to see the article click here.
So that's all the news really, I don't have to decide about the trial till the day of the procedure and he said he would have more of a chat about it to me then. They'll be in touch soon with a date for when it's going to go ahead.
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