Friday I had my first official appointment under Frimley Park hospital's care. I know it's not fair to compare the two hospitals because Frimley has such a small unit compared to the Brompton, but it was hard not to! Great parking, no queue times, people who had time for me, it was a welcome change :)
I did my usual tests- one of them being lung function. The nurse was using a new system and she told me by FEV1 was 73%! I was astonished! I thought a miracle had happened lol. Turned out she'd accidentally told me the wrong numbers and my lung function was back down to 53%. Still alright, but not great.
I'd had my height and weight done too- somehow I've got smaller lol, but my weight has improved so with those two things combined I now am just in the "healthy" borders of weight YAY. Still need to improve, as ever, so the lovely dietician (who Alex fancies hahaha) gave me a load of different supplements to try. One of them has a bottle a bit like people who are on protein shakes. I love it, I feel so macho with it lol.
The only long part of the appointment was the xray. It's on a different unit to the CF one and the lady who was working that day was soooooo slow with everything! From walking to talking. It felt like it was taking forever- although it probably wasn't but I was so hungry by this point everything was an effort.
Next I spoke with Dr Orchard, who used to work at Brompton, and discussed a lot of things. He asked why I decided to leave Brompton, so briefly went into that. I wanted to ask him the same question, but thought that might be too personal and just me being nosey lol. He asked how happy I was with where my CF is right now; I said I felt it was alright but in an ideal world I'd still have a much higher lung function! I'm sure most people with CF would say the same thing.
Within my friends, a lot of them are pregnant or have babies etc, so Alex and I wanted to clarify where we stand on that topic and what our options are. We'd like a family sometime in the future, if possible, and we have spoken to the Brompton a number of times about the ins and outs of this topic. It's always good to hear different medical professional's perspectives and get an update every so often as to what our options are in relation to my health. Also, in case there have been any medical advances that might effect us.
With CF, and I'm sure a number of other illnesses, pregnancy isn't straight forward and I don't think it's something to jump into without speaking to your medical team. At this point in my CF, I'd just be ok to go through a pregnancy without too many complications (of course this can't be guaranteed), but who knows how well I'd be after the baby is born. I'd hate to not be able to look after my child at all for goodness knows how long. Plus actually getting pregnant will be a struggle for me. So, Alex and I think that the most sensible way to go would be surrogacy. Unless a miracle happens and my lung function shoots through the roof! Anywho, we're not there just yet, but it's always good to know your options.
Then the dreaded blood test came. I am not great with needles. At the Brompton I had a lot of work with a psychologist trying to help me, and I am much better than I used to be, but they still aren't my favourite pass-time. I get quite nervous, which I think makes the poor person trying to bleed me nervous. The lovely nurse tried once but knew I wasn't great with needles, so didn't want to keep trying and got one of the doctors. Not the most relaxing environment for me to meet one of my new docs, but eventually she managed to get the job done so I immediately liked her! My port flushes aren't usually a problem and that was straight forward.
So overal, a good appointment. I'm hoping to last another month without IVs but I can notice my health changing quite fast. It's frustrating, but I have done so much better then I had been. It must be because of the orals I had a few weeks ago. So I need to try and keep up my eating and not overdo it with the dog grooming at the moment.
Speak soon! xo
Monday, 27 April 2015
Monday, 9 March 2015
Changes
Feels like forever since I last blogged. A lot's been going on in my head. On the last post I briefly mentioned a disastrous trip up to the Brompton and since then I have been doing a lot of thinking. I hate to speak badly about people or organisations, especially when I know they only have good intentions. However, this is a very open, honest blog and I have to say how I'm feeling. It's sort of like therapy writing this because once I've written it I feel like a weight has been lifted and it's no longer filling up my brain. Like they say, "a problem shared is a problem halved".
So, the problem is is that whenever I know my Brompton appointment is in a few days I get stressed out. Usually the day before the appointment is when Alex, my family and even the dog notice it. This stressed out state will continue throughout the whole day of the appointment and calm down a day or 2 after it. So that's about 3 days of stress for just one appointment. Crazy!
It's all because of a few factors. The worst one being PARKING! OMG, it's become a joke now. First and foremost, this isn't the hospital's fault it's just the way London works. There are about 5 disabled parking bays directly behind the hospital- one of which has had a metal fence round it for over a year because a company is using it to store materials and what not for some building work. Why they needed to use a disabled bay I'll never know! Anywho, so next to those are 3 or 4 bays that the hospital actually own (the hosp have thousands and thousands of patients, yet only 3 or 4 bays of their own), which you have to book 2 weeks in advance to use on a first come, first serve basis. Other than those, there are a few other disabled bays dotted around a few streets away infront of other hospitals. If you don't manage to get those golden-ticket-disabled bays, then I'm afraid you'd have to cough up £3.30 p/h for a parking bay. It wouldn't be so bad if you knew how long you'd be in the hosp, but with the waiting times increasing, you could put on 3 hours worth, then have to go back out to put in another couple of hours on your car, just to return to the hospital to find out you've just missed the doctor. So you end up £16.50 worse off and in a crap mood.
Sorry, I feel like I'm being super negative, but it's the harsh reality :(
There's also the issue of the doctors at the Brompton. In the last 2 years, I haven't seen the same doctor twice- except for if I was an inpatient. Every appointment I have to repeat myself and my life story because they never know me, I'm just a number and a folder that they don't know personally and haven't had time to read my notes. It always gets me down that I spend soooo many hours getting there, looking for parking and waiting around just for the doctor to rush in late, give me 5-10 minutes of their time and rush back out again. I feel guilty if I have any questions to ask. It's not the way it used to be and I'm feeling like my needs are being met by them anymore :(
I know the hospital has been struggling a bit the last year or so with the head consultant, Dr Bilton being very ill and no doubt changes in laws and budgets etc. You can feel the atmosphere has changed a bit. The CF team and the nurses on the wards are trying so so hard, but the work load for them is just enormous. They have so many patients, it's no wonder my bloods have been lost, or appointments accidentally cancelled or what have you. I totally don't hold it against them and try and be as helpful and easy to deal with as possible by turning up on time to appointments, being as independent as I can in booking/re-booking/canceling appointments or getting in touch with physios, dietitians, wards etc.
So I started researching other hospitals that specialise in Cystic Fibrosis. I found one called Frimley Park hospital, that is almost the exact same distance from me, just in the opposite direction to the Brompton. I got in contact with a couple of girls who I knew went there and decided to book an appointment to meet the head nurse. I drew up a list of questions and Alex and I went to check it out. One of the first reactions I had as we were driving there was how green the area was! It was so lovely to drive through more country roads, seeing fields and animals. The air was so fresh, no pollution! Compared to the busy, polluted roads of London it was a welcome change.
Once we arrived at the hospital there were thousands of parking spaces: designated CF spaces, loads of disabled bays and so many regular bays. Even better is that it is all completely free for me and any of my friends and family who visit! I met Judith, who I believe is the head nurse of the CF unit- which is only about 110 patients compared to Brompton's 2000+ CF patients. She was lovely and answered all my questions. She reassured me that I would always see one of their 3 consultants (one of whom I used to know from Brompton) every appointment, so they're much more personal. There are many more advantages of this lovely unit, but I'd be here all day listing them.
Now is the hard part; saying goodbye to the Brompton. I feel terrible that I want to leave them. The team have helped me so much and helped me overcome my phobias. I don't want them to feel that I don't like them as individuals- or even as a team- it's just I can't be dealing with the amount of stress that I have by going there. I feel like I need doctors who know ME and have a relationship with me. I'm going to miss seeing friends up there and the CF specialist nurses like Millie, Suzie and Alan! I'll miss the lovely polish cleaning man and even though they are annoying, I will miss the "tea coffee please" people lol. The dietitians, physios, receptionists, phlebotomists. The Foulis nurses, the Lind nurses, the ambulance drivers. It's like a second home there now. But I need to do this just to see if the grass really is greener on the other side. I can always go back if I don't like Frimley Park.
So, the problem is is that whenever I know my Brompton appointment is in a few days I get stressed out. Usually the day before the appointment is when Alex, my family and even the dog notice it. This stressed out state will continue throughout the whole day of the appointment and calm down a day or 2 after it. So that's about 3 days of stress for just one appointment. Crazy!
It's all because of a few factors. The worst one being PARKING! OMG, it's become a joke now. First and foremost, this isn't the hospital's fault it's just the way London works. There are about 5 disabled parking bays directly behind the hospital- one of which has had a metal fence round it for over a year because a company is using it to store materials and what not for some building work. Why they needed to use a disabled bay I'll never know! Anywho, so next to those are 3 or 4 bays that the hospital actually own (the hosp have thousands and thousands of patients, yet only 3 or 4 bays of their own), which you have to book 2 weeks in advance to use on a first come, first serve basis. Other than those, there are a few other disabled bays dotted around a few streets away infront of other hospitals. If you don't manage to get those golden-ticket-disabled bays, then I'm afraid you'd have to cough up £3.30 p/h for a parking bay. It wouldn't be so bad if you knew how long you'd be in the hosp, but with the waiting times increasing, you could put on 3 hours worth, then have to go back out to put in another couple of hours on your car, just to return to the hospital to find out you've just missed the doctor. So you end up £16.50 worse off and in a crap mood.
Sorry, I feel like I'm being super negative, but it's the harsh reality :(
There's also the issue of the doctors at the Brompton. In the last 2 years, I haven't seen the same doctor twice- except for if I was an inpatient. Every appointment I have to repeat myself and my life story because they never know me, I'm just a number and a folder that they don't know personally and haven't had time to read my notes. It always gets me down that I spend soooo many hours getting there, looking for parking and waiting around just for the doctor to rush in late, give me 5-10 minutes of their time and rush back out again. I feel guilty if I have any questions to ask. It's not the way it used to be and I'm feeling like my needs are being met by them anymore :(
I know the hospital has been struggling a bit the last year or so with the head consultant, Dr Bilton being very ill and no doubt changes in laws and budgets etc. You can feel the atmosphere has changed a bit. The CF team and the nurses on the wards are trying so so hard, but the work load for them is just enormous. They have so many patients, it's no wonder my bloods have been lost, or appointments accidentally cancelled or what have you. I totally don't hold it against them and try and be as helpful and easy to deal with as possible by turning up on time to appointments, being as independent as I can in booking/re-booking/canceling appointments or getting in touch with physios, dietitians, wards etc.
So I started researching other hospitals that specialise in Cystic Fibrosis. I found one called Frimley Park hospital, that is almost the exact same distance from me, just in the opposite direction to the Brompton. I got in contact with a couple of girls who I knew went there and decided to book an appointment to meet the head nurse. I drew up a list of questions and Alex and I went to check it out. One of the first reactions I had as we were driving there was how green the area was! It was so lovely to drive through more country roads, seeing fields and animals. The air was so fresh, no pollution! Compared to the busy, polluted roads of London it was a welcome change.
Once we arrived at the hospital there were thousands of parking spaces: designated CF spaces, loads of disabled bays and so many regular bays. Even better is that it is all completely free for me and any of my friends and family who visit! I met Judith, who I believe is the head nurse of the CF unit- which is only about 110 patients compared to Brompton's 2000+ CF patients. She was lovely and answered all my questions. She reassured me that I would always see one of their 3 consultants (one of whom I used to know from Brompton) every appointment, so they're much more personal. There are many more advantages of this lovely unit, but I'd be here all day listing them.
Now is the hard part; saying goodbye to the Brompton. I feel terrible that I want to leave them. The team have helped me so much and helped me overcome my phobias. I don't want them to feel that I don't like them as individuals- or even as a team- it's just I can't be dealing with the amount of stress that I have by going there. I feel like I need doctors who know ME and have a relationship with me. I'm going to miss seeing friends up there and the CF specialist nurses like Millie, Suzie and Alan! I'll miss the lovely polish cleaning man and even though they are annoying, I will miss the "tea coffee please" people lol. The dietitians, physios, receptionists, phlebotomists. The Foulis nurses, the Lind nurses, the ambulance drivers. It's like a second home there now. But I need to do this just to see if the grass really is greener on the other side. I can always go back if I don't like Frimley Park.
Sunday, 1 February 2015
Baby's arrived!
Finished my IVs on Friday after a 3 week course. So glad to have some energy back. Not sure what my lung function is as had a nightmare hospital trip on Friday, so never saw the doctor (CBA to get into that palaver, maybe next post lol). My mum's going to my lung function test for me next week though.
The most exciting news this week was the arrival of my new baby cousin, Lucy! My family and I went to see her when she was 2 days old, she is so teeny weeny but has the chubbiest cheeks going. Congratulations Uncle Mark, Aunty Lorraine, Jack and Toby xoxo
Since my last post, I have started my belly dancing classes; it's a lot more difficult than I imagined. All of us in the group started at the same time so none of us are any good yet. It's so funny watching each other! I've ordered myself a jingly jangly skirt ;)
I've also re-joined a new gym lol. Like most people do in January! Had my induction, so will start going as from tomorrow. Need to build up my muscle again and hopefully by going I will increase my appetite and put back on the weight I have lost recently.
So now going to enjoy my healthy time while I can :D :D Byeeeee xoxo
The most exciting news this week was the arrival of my new baby cousin, Lucy! My family and I went to see her when she was 2 days old, she is so teeny weeny but has the chubbiest cheeks going. Congratulations Uncle Mark, Aunty Lorraine, Jack and Toby xoxo
Me and Lucy
The family!
Those cheeks!!
Me and my cousins
I've also re-joined a new gym lol. Like most people do in January! Had my induction, so will start going as from tomorrow. Need to build up my muscle again and hopefully by going I will increase my appetite and put back on the weight I have lost recently.
So now going to enjoy my healthy time while I can :D :D Byeeeee xoxo
Thursday, 15 January 2015
January IVs
I seem to need IVs around the same sort of time each year: January, July, September- possibly with a few more in there too. So, as expected, I'm on IVs now. Nearly half way through and starting to feel much better. It was a rocky start this time.
I had gone up to get them on a Tuesday, which I thought was a bit odd as I usually always have them started on a Thursday or Friday, as that is when the ward is quietest for the staff and they have a side room for me. I went up and it was rammo! Patients and doctors everywhere; in the halls, in the loos, in the wards.. It took me a while to get a side room and mentioned to them I had to leave no later than 3.15 as I had a dog to groom. It was 11am that this time so thought that would be more than enough time. Turns out it wasn't. By 2.30pm I still hadn't had my port accessed- which is one of the earliest things they do when I'm there. I'd worked out there was no way I'd be able to have my IVs done, wait the hour needed to check I don't have an allergic reaction, wait for pharmacy and get home in time for the dog. So I had to leave. I was really disappointed as I was feeling so ill and they were obviously over booked so didn't understand why they had booked me in too. It costs a lot in petrol money and parking charges to get up there, not to mention the waste of time too.
Anywho, I re booked and went up the following Friday and was in and out in about 3 hours :) The ward was much calmer and wasn't over booked. That night I had my Christmas elf work do. Was lovely seeing everyone again but I was feeling so ill that I had to call Alex to pick me up after about an hour. I was really ill that night, throwing up and aching everywhere.
Glad to say I'm now feeling much better than that :) I'm currently looking after Harry the dog for a 3 day sleepover as his owner is away. All I have planned is sleeping, watching films and eating :D Can't wait ;)
I also have enrolled for belly dancing classes lol! Thought it would be a good idea for some gentle exercise, and sounds fun!
Speak soon xoxo
I had gone up to get them on a Tuesday, which I thought was a bit odd as I usually always have them started on a Thursday or Friday, as that is when the ward is quietest for the staff and they have a side room for me. I went up and it was rammo! Patients and doctors everywhere; in the halls, in the loos, in the wards.. It took me a while to get a side room and mentioned to them I had to leave no later than 3.15 as I had a dog to groom. It was 11am that this time so thought that would be more than enough time. Turns out it wasn't. By 2.30pm I still hadn't had my port accessed- which is one of the earliest things they do when I'm there. I'd worked out there was no way I'd be able to have my IVs done, wait the hour needed to check I don't have an allergic reaction, wait for pharmacy and get home in time for the dog. So I had to leave. I was really disappointed as I was feeling so ill and they were obviously over booked so didn't understand why they had booked me in too. It costs a lot in petrol money and parking charges to get up there, not to mention the waste of time too.
Anywho, I re booked and went up the following Friday and was in and out in about 3 hours :) The ward was much calmer and wasn't over booked. That night I had my Christmas elf work do. Was lovely seeing everyone again but I was feeling so ill that I had to call Alex to pick me up after about an hour. I was really ill that night, throwing up and aching everywhere.
Glad to say I'm now feeling much better than that :) I'm currently looking after Harry the dog for a 3 day sleepover as his owner is away. All I have planned is sleeping, watching films and eating :D Can't wait ;)
I also have enrolled for belly dancing classes lol! Thought it would be a good idea for some gentle exercise, and sounds fun!
Speak soon xoxo
Tuesday, 23 December 2014
CHRISTMAS TIME!
2 days to go! :D Love this time of the year!
Been elfing at the garden centre again this year, which has been great again. My sister, Abi, has been doing it too this year so it's been nice to occasionally work with her.
My friend with CF, Darren, couldn't work there this year though, as he has been too ill with chest infections, low energy and oxygen levels etc :( So, as I was up the hospital anyway yesterday for my annual review follow up appointment, I went to visit him in my elfing gear with a little gift. Was great to see him, just as chatty and cheeky as ever even though he's not 100% at the moment. Get well soon Darren!! xx
So, as I said, I was up the hosp yesterday for my follow up appointment. Overall, it was a brilliant review for me! The doc said my lung function hadn't changed much at all since last year, which is amazing news. It seems as though I'm coming out of the period where girls seem to decline a lot, and I'm now stabilising. All the blood tests were fine, as were my bone density scans.
I had been asked to do blood sugar monitoring for 2 weeks because my glucose test came back as I was borderline diabetic. However, the 2 weeks testings were fine, so the doc thinks that the original glucose test results were more worrying because I never usually have that much sugar and fizzy drink in one go in my normal diet and having it all in one might have just shocked my system a bit and my body couldn't deal with it all in one go.
We then spoke about the trials that are happening in the CF world. There are different gene types in CF, which just means different variations of it really. You get 1 from each parent. There is already a good drug for one of the gene types and they are currently trialling a new one for the gene type DF508. I have one copy of that gene type, but sadly for me you need to have 2 copies of it to eventually get that drug. However, the next trial should be one for people with different copies of genes, which means that I could get that one :) It won't be for probably another 5 years, but at least there is hope!
Anyway, about to do my final dog groom before Christmas :) Have a magical Christmas and a happy and healthy New Year! xoxoxo
Been elfing at the garden centre again this year, which has been great again. My sister, Abi, has been doing it too this year so it's been nice to occasionally work with her.
My friend with CF, Darren, couldn't work there this year though, as he has been too ill with chest infections, low energy and oxygen levels etc :( So, as I was up the hospital anyway yesterday for my annual review follow up appointment, I went to visit him in my elfing gear with a little gift. Was great to see him, just as chatty and cheeky as ever even though he's not 100% at the moment. Get well soon Darren!! xx
So, as I said, I was up the hosp yesterday for my follow up appointment. Overall, it was a brilliant review for me! The doc said my lung function hadn't changed much at all since last year, which is amazing news. It seems as though I'm coming out of the period where girls seem to decline a lot, and I'm now stabilising. All the blood tests were fine, as were my bone density scans.
I had been asked to do blood sugar monitoring for 2 weeks because my glucose test came back as I was borderline diabetic. However, the 2 weeks testings were fine, so the doc thinks that the original glucose test results were more worrying because I never usually have that much sugar and fizzy drink in one go in my normal diet and having it all in one might have just shocked my system a bit and my body couldn't deal with it all in one go.
We then spoke about the trials that are happening in the CF world. There are different gene types in CF, which just means different variations of it really. You get 1 from each parent. There is already a good drug for one of the gene types and they are currently trialling a new one for the gene type DF508. I have one copy of that gene type, but sadly for me you need to have 2 copies of it to eventually get that drug. However, the next trial should be one for people with different copies of genes, which means that I could get that one :) It won't be for probably another 5 years, but at least there is hope!
Anyway, about to do my final dog groom before Christmas :) Have a magical Christmas and a happy and healthy New Year! xoxoxo
Monday, 10 November 2014
Needing IVs
Last Weds the plan was to start home IVs as I wasn't feeling too good and wanted to have a boost before the Christmas elfing starts. So the usual routine was done: weight, lung function, sats etc etc and Barbara decided to try a different combination of IVs; Meropenum and Colomycen. I had only had Colomycen as a nebuliser not as an IV drug before, so a nurse sat with me when I was giving it to make sure I was ok. All was fine until about 5 mins after I'd finished and I felt my throat closing up. The nurse had left at this point so I rang the buzzer and ran out to the other ward where she was. It's so important yet so hard not to panic during these situations as it can make it so much worse. I found if I coughed it opened my throat up a bit and if I breathed through my nose it was less tight. The whole thing only lasted about 5 minutes but we all agreed I shouldn't be sent home on that medicine.
So went back the next day to start my usual IVs and they went through fine. Been on them about 5 days now and think I'm doing OK :)
I've also started a new supplement to try and put on more weight. There are lots of different flavours, which I am trying in a starter pack. So far I have tried Forest Fruits, and it was about 4/10. It's like a milk based supplement so it's a bit like Forest Fruits milkshake. Not my thing lol.
I heard back from the dietician about my annual review blood glucose test.. Wasn't great so I need to do blood sugar monitoring for a while to make sure I'm not diabetic.
Been to fireworks at my cousin's this weekend, an annual event at their house! Was lot of fun. Next is CHRISTMAS!!! :D
So went back the next day to start my usual IVs and they went through fine. Been on them about 5 days now and think I'm doing OK :)
I've also started a new supplement to try and put on more weight. There are lots of different flavours, which I am trying in a starter pack. So far I have tried Forest Fruits, and it was about 4/10. It's like a milk based supplement so it's a bit like Forest Fruits milkshake. Not my thing lol.
Been to fireworks at my cousin's this weekend, an annual event at their house! Was lot of fun. Next is CHRISTMAS!!! :D
Wednesday, 29 October 2014
Annual Review
Last week I visited the hospital twice; once for an appointment, which turned out I didn't need, as I also had my annual review three days later.
An annual review is exactly how it sounds.. a review of your health which happens once a year. To prepare for it I can't eat, take any vitamins or drink anything other than water from 12 the night before. Then I go to the hospital for tests.
I have a blood glucose test, which is what the fasting is for. They do a blood test, then give me some lucozade to drink, then repeat the blood test 2 hours later to see how well my body deals with the sugar. It's to test whether I am diabetic or not. They say no news is good news, and I haven't heard back yet so I'm hoping I'm diabetes-free for another year! :D
They take about 13 bottles of blood in the day to test for different things. I also have an xray, bone density scan and a more thorough lung function test than they do at the regular appointments. I haven't seen my xray yet, but the bone density scan man said my bones look stronger than last year, but still a bit on the low side and the lung function came back pretty similar to last year, which is great news.
I get to see the physio, dietician, pharmacist and someone from the CF homecare team too, to talk through everything I'm doing at home.
All in all, it's quite a long and tiring day- especially when you haven't eaten! It seemed to go relatively smoothly though, thankfully.
Asides from that, I'm being a Halloween witch at the garden centre, before the elfing re-starts. It's been nice seeing the children all dressed up in their costumes with their faces painted. My good friend Emily has designed the Christmas grotto this year and during this week I've helped out with painting some of the scenery for it. All ready for Christmas :D
An annual review is exactly how it sounds.. a review of your health which happens once a year. To prepare for it I can't eat, take any vitamins or drink anything other than water from 12 the night before. Then I go to the hospital for tests.
I have a blood glucose test, which is what the fasting is for. They do a blood test, then give me some lucozade to drink, then repeat the blood test 2 hours later to see how well my body deals with the sugar. It's to test whether I am diabetic or not. They say no news is good news, and I haven't heard back yet so I'm hoping I'm diabetes-free for another year! :D
Blood test room
I get to see the physio, dietician, pharmacist and someone from the CF homecare team too, to talk through everything I'm doing at home.
All in all, it's quite a long and tiring day- especially when you haven't eaten! It seemed to go relatively smoothly though, thankfully.
Asides from that, I'm being a Halloween witch at the garden centre, before the elfing re-starts. It's been nice seeing the children all dressed up in their costumes with their faces painted. My good friend Emily has designed the Christmas grotto this year and during this week I've helped out with painting some of the scenery for it. All ready for Christmas :D
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