Urgh!

Well these IV's have hit me like a ton of bricks really! I feel bad talking about this as I know my friend Tori has being in alot of pain after her transplant and my problems in comparison seem minor, however it doesn't change the fact my IV's have being evil to me this time around. Anyway this post is not me moaning, I know I will feel better in a few days so I can deal with it, this post is more of an informative post on what it's like on the evil IV's!

Yesterday I woke up to my IV's at 6am and had the most horrendous headache ever. I managed to hobble to the kitchen to take some ibuprofen, then realised I am not supposed to take these when on colomycin, but I didn't actually care! I then attached my ceftaz and crawled back into bed, I had to take my ear plugs out as I could just hear the throbbing of my headache. This then meant I had to listen to Pete breathing like a 40 a day smoker, he is the most noisiest sleeper ever, hence the ear plugs. I just laid there wanting to die because my head hurt so much and I wanted to punch Pete but I decided he was getting up in an hour or so, so I should be nice and let him sleep. 45 minutes later I crawled out of bed again and swapped my ceftaz for colomycin and took two paracetamol as my head was no better. I crawled into bed, praying for Pete to get up soon and he did eventually and I flushed my colomycin off after about 25 minutes (these IV's take forever to go through!). I then fell back to sleep and woke up at 10.30, my head was abit better but I just lay there not daring to move my head incase it came back.

I basically lounged around until about 2pm when I decided to actually get a wash and get dressed, I just feel crap which is annoying because I felt OKish before! Why, whats wrong people ask me? How exactly does it make you feel crap? Well I shall try my best to describe.... first, there is a constant heaviness in my head, imagine your head is full of heavy weights, it doesn't exactly give you headache but it's there knocking around, blocking your thoughts and pushing on the sides of your head, like your head needs to explode.

Then imagine you are constantly in water and trying to move around in it, that's how my body feels, moving seems such hard work and my muscles feel kind of achey, my balance is also quite bad so I keep dropping stuff and really having to focus on what I am doing.

Then imagine your lips are really dry and feel bigger than normal and you have a funny taste in your mouth, like when you are hungover, that furry feeling on your tongue. Also imagine that you have loads of mucus stuck in your throat and it's bubbling in your chest and it mixes with the furry taste in your mouth to just make you not want to eat anything. If you do eat something it just loosens up the mucus and then makes you cough which makes your head get a sharp pain because you have moved the weights in your head.

On top of all this, the ceftaz is making your sweat and wee smell of cat wee. So you feel pretty gross and dirty but can't even be bothered to do anything about it.

That's about how I felt yesterday! I do feel abit better today, so I imagine by Sunday or something I will feel alot better. However yesterday this did not make me feel better! I did manage to wash the bedding, have a bath and do some ironing as well as physio etc. I made Pete get us Dominos pizza for tea, we have no food in whatsoever and I wasn't feeling creative enough to try create something from the depths of our freezer.

On another note, my hair is just horrible at the moment, it needs cutting and my roots are really dark so I don't exactly feel my most attractive. My hair just won't do as its told, its all dry and icky. Seriously need to get it done next week to lift my spirits!

Let The IVs Commence

I started my IVs today, I'm on colomycin and ceftaz 3 times a day. The nurse used a different cleaner to clean my port before she put the needle in so hopefully my arm won't get sore this time. I know I haven't moaned about my port as much lately but this allergy thing is ongoing and I don't want to bore you. It has defiantly gotten better with the different dressings, the dressing I have that makes contact with the skin is called kaltostat. This dressing absorbs any moisture and makes it into a hard gel, so they skin is kept dry. It is usually used for sores etc. Anyway I think what is happening, is that the cleaning liquid makes my arm dry and sore. Then because it is covered up it starts to weep and this makes my arm more sore. Therefore the kaltostat is stopping the arm becoming worse whilst covered up, but if I can stop the problem from starting in the first place then my arm will not itch or be sore atall or very little and I will be one happy lady!

I was very impressed with how well the nurse put the dressing on. It's like a military operation, very fidgety and usually it ends up looking abit of a mess. However she did it really well and it made my day, because there is none stuck under my armpit, she didn't have to use two sheets of hypafix so it doesn't look messy, and all the edges are stuck down so there are no curly up bits for fluff etc to stick to. Such a silly thing to be made up about, but its small things like this that make the whole IV's thing abit easier!

I also had a good chat with the Doctor about the surrogacy, she seemed really supportive and asked me some questions as she doesn't know much about. She even said if it all worked out, then it would be good if I could do an article for the newsletter to let other patients know about the options available to them.

How random is this? My lung function is actually higher than it was at my last outpatients appointment. I blew an fvc of 62% and and fev1 of 39%, it was 36% at my outpatients appointment 4 weeks ago! It just shows that your lung function doesn't always illustrate how you are feeling!

The results have finally come back telling us what my scedosporium fungus is sensitive to. The good news is... everything! Voriconazole, itraconazole, caspofungin and another one beginning with 'A', Amphotericin maybe? So this provides options if the voriconazole stops being effective. At the moment I am still on the voriconazole, one month on and one month off.

Also I discussed with the dietitian my weight as its down slightly again, to 53.7kg, less than a year ago it was easily sitting on the 56kg mark without any calorie supplements, whereas now I am having a skandishake a day. The doctor showed me my weight graph and there has definitely being a drop. She said the contraceptive pill could have being helping me keep my weight on and after I discussed it with the doctor, we have decided I am going to go back on it. I also am going to try have 2 skandishakes a day whilst on my IV's.

Thats about it for today folks!

Incy Wincy Spider

Well what a lovely weekend we have had! People always ask me if the warm weather affects my chest, in short the answer is no. I think the humidity is the factor that affects it, but to be honest unless I am forced to do some exercise, it doesn't seem to bother me. I can't comment on whats happening inside as when I went to Thailand my chest felt great, but I was coughing up blood at times, so that doesn't make sense!
What the heat does do is make me tired, I think it probably makes everyone tired. I can't compare my rate of tiredness to another persons, so I have no idea if I get more tired, its not a competition anyway.

What is annoying when I get warm, is the salt factor. People with CF have more salt in their sweat, it can dry as crystals, which is real fun around your hairline. Also it makes your hands taste all salty, although to be honest I don't think my salt factor has ever being that bad compared to others with CF. Anyway it can be annoying, it makes you feel dirty and well ...salty! We have to take tablets to replace the lost salt when its warm, otherwise we can feel lightheaded and get cramps, I find if it's been a warm day and I haven't taken any salt tablets, my legs ache that night and it feels like they need a really good stretch. I learnt this could be related to loss of salt by a post on the CF forum, amazing the things you can find out on there.

On Sunday we went to collect a sofa we had won on ebay for £67, what a bargain! It's to go in the kitchen, my dad was going to give us his sofa but it was far too big and we couldn't really afford a new sofa, so ebay was the answer!

The sofa was in Sheffield which is about a 30-40 minute drive away from us. My brother has a van for work and agreed to help us out, although he was hungover so Pete had to drive there which was an experience for him. This is how much Pete knows about vans, he asked me if it would have air conditioning... (erm no).

The house we went to was abit random. The door bell was at the side of the gate so I rang it and waited. I was just about to assume it wasn't working, when a big sheet of metal which I had assumed was an ugly fence, started rolling up to let us in. Wonder why they need so much security....?!



I gave the sofa a good clean when we got back and then I went around spraying all the weeds with weed killer. I spent an hour on Friday digging up massive weeds, it was like 10% of all the weeds in our garden. So a long way to go yet! Pete washed the car, we have an outside tap now so who knows, it might become a regular thing, I won't hold my breath though haha!!

I got attacked by a massive spider today. I was sorting out the washing and it literally jumped at me, which resulted in me screaming very loud and then trying to get away from it to get a glass whilst having a coughing fit. I put the glass on it then danced around for a while to calm my nerves before putting some card under and releasing it back into the garden. Stay away Mr Spider because next time you might not be so lucky, I may get the help of my friend Mr Dyson!

We have booked our train tickets for when we go to London in August and we have also booked tickets to go look around the Houses of Parliament. So excited! Can't wait for our trip!

That's about it folks, the excitement that is my life! Just got IV's to look forward to now, wayhay!

Straight Surrogacy

After many chats about our experience last week and the realisation we can't grow money on trees (I can't even grow proper plants so a money tree is not going to happen!) we have decided we are going to go ahead with straight surrogacy.

Straight/traditional surrogacy is where the surrogate uses her own egg fertilised with the intended father's sperm, this is done by artificial insemination using a syringe. This means the baby would not be biologically related to me.

There are many reasons we have decided this, it's not just because of the bad experience last Tuesday, I've have dickhead doctors before, yes they are a pain and I have already called and tried to be transferred to another doctor, no-one has called me back yet. It's what I expected to be honest, if we were still going ahead with the host surrogacy I would ask my CF team to refer me this time and just start from scratch again. So it's not because of that.

I've gone through the reasons in more detail on my other blog, but here they are

No IVF Clinics, needles, drugs etc. I think I have enough medical treatments and procedures to deal with!
The cost is alot lower because of the above
The success rate is greater and it may take less time, less emotional stress?
Genetics is not that important to me
I can go back on the pill and hopefully not have as much problems with my weight anymore

So we have started the necessary tests etc to start this process. We are also attending a surrogacy social event in July which I am really looking forward to!

Burglars Be Warned!

Just booked myself in to start some IV's on Wednesday. I've been trying to put it off until my outpatients appointment next Friday but looking at my social calendar its best to get them out of the way!
Basically the past few days the left side of my chest as being hurting, it's like a stabbing pain when I breathe in. I've also been feelings breathless easier as my whole chest is feeling quite tight. In addition to this my sputum has become very thick and dark and it tastes absolutely minging, to the point it's making me feel sick at times. Also I my weight has gone down abit. So all in all, time for IV's I think!
I'm not bothered to be honest, I feel like I've had a busy month and could do with abit of a rest. It's just typical it will probably start to get warm when I'm on IV's and I won't be in the mood for going out and appreciating the sun!

Yesterday I won a sofa on ebay for £67! The seller says it has never been used and has just being in storage for a year. I am hopefully going to collect it with my brother tomorrow or Sunday as he has a van and it's down in Sheffield. It's a two seater sofa to go in the kitchen as we are going to have a little living area in there. There is already a TV bracket on the wall from the previous owners so it only seems right we put a TV on there!

On Monday I got a letter through for someone called Gina, I was going to throw it away as neither of the previous owners were called Gina and the surname was different. However on the letter it said private and important so I thought I best open it and I'm glad I did! It was a debt collection letter saying if she didn't respond in 7 days they were going to come and re posses items to pay off her debt! So I rang up and told them she had never lived here and they said they have removed the details, I'm still worried though!

We are getting a burglar alarm fitted today, I am currently sat in our bedroom with Alfie and Murphy whilst the guy fits it. So if anyone was planning on breaking into our home, I wouldn't bother anymore ;o)

Rollarcoaster Week

What a rollarcoaster of a week!

Pete and I have been making some important decisions regarding the surrogacy and I will discuss it on my blog in due time. However I have other things that I feel are more important today.

Firstly, on Friday another CF friend was devastatingly taken from us. Nicola was not on the transplant list but was having a terrible time and had become very ill over the past year or so. I don't really know why, it was very complicated and she didn't talk about it all the time, infact the news of her death was a great shock and even though I didn't know her that well I shed a tear for her. Because it was unexpected (to me anyway) and hit me with a big dose of reality, people with CF can go downhill quicker than you think and it take lives, it doesn't care how lovely, caring and beautiful that person was. It kills them, one minute they are here and you think they will hang in there, they have to - the next minute a family member informs you they are gone. You wish you had realised they were that ill, but then you realise it wouldn't have made a damn bit of difference and abit of normality is probably what they needed to try to keep fighting and feel like they were living and not dying.

Beautiful Nicola - 1983-2010

This sad news has been followed by extremely great news, although to be honest I am very worried at the moment! My favourite girl and best friend Victoria received her 'call' last night and is in theatre as I type getting new lungs! I will be thinking (and worrying) about her day and night until I know she is recovered and on with her new life, please keep her in your thoughts and prayers.

Please also spare a thought for the donor and their family (transplant is always a good news, bad news situation), without their kindness in such a difficult time, Victoria would not be getting this second chance at life.

Victoria doing what she does best ;o)

Disappointment

We had our first appointment with the IVF doctor yesterday, it didn't go too well and we have alot to think about and to possibly try get referred to another doctor. You can read the full story on my other private blog, click here. Let me know if you want me to send you an invitation to be able to read it.

On to other things....

The nurse came out to flush my port yesterday. Usually I go to the hospital to get it flushed but she offered to come out to me which was nice, my experience for this port flush was alot better than last time! I told her about my last experience and she said that particular nurse was leaving, glad to hear it! I think I am definitely allergic to the liquid they use to clean my port before it is flushed, the port area itched all afternoon and it can't be the dressing as I had none on, it was only a flush so the needle goes in, some hepflush is pushed in and then the needle comes out. I'm going to try see if a different cleaning liquid can be used for when I next go on IV's, although there are probably strict rules saying they can only use a certain one!

Yoga on Monday was hard work. I got really out of breath, thought I might have to stop at one point but I managed to keep going. The teacher even said it had been a difficult one so that made me feel abit better! I'm trying aqua aerobics tonight, I'm really nervous! Wish me luck!

Good Old Wifey

Hum, I do not think I have been upto much this week of interest since I last blogged.

Alfie I went for a nice walk on Friday, there were teeny tiny ducklings walking around with their mummy and I was scared Alfie might go after them but he didn't, such a good boy!

We watched the election on Thursday night until about 11.30pm then decided we'd had enough, I'm glad we didn't stay up, as there was no winner so I imagine it was pretty boring. In our area we had our local and general elections, I registered for postal votes for both. However Pete registered to do the local election by post and the general at a polling station. He took his polling card and when he arrived was told he could not vote there even though he had a card as he was registered for postal vote! He rang me up quite dismayed as we have both been taking this election stuff quite seriously and to no be able to vote makes the last month of decision making pointless! Also there is the whole issue of his right to vote etc etc.

I called the electoral office and explained what had happened, she looked it up and said he was indeed allowed to vote at the polling station. Someone called me back and said they had gotten the local and general election mixed up and were really sorry. Pete went back down and they said they were 'profoundly sorry', think he was quite surprised at how sorry they were! So he did get to vote in the end, good old wifey sorting things out for him! Compared to the problems in Sheffield though, where people queued for 2 hours and then were not allowed to vote, ours was small in comparison. What a shambles that was!

I've run out of Tobi again! Whats wrong with me! I am slightly annoyed, I took the prescription in to the chemist on Wednesday and went in on Thursday to pick things up. She told me she had ordered the tobi 'today', I took the prescription in yesterday so why is it only been ordered today?! Grr!! I went in on Saturday and it still hadn't come in, so now I have to hope it has come in by Monday. Also annoyed because I asked the prescriptions clerk at the GPs for some vitamin K and she has forgotten to put it on, so now I have to ask for it again! Argh!!! For those of you that asked why my chemist can't sort my prescriptions... Its because my GP is not local so they do not provide that service with my GP's. The closest chemist that does is the one that is next to the GP's so I don't see the point. I'm at my wits end to be honest, the GP's write some of my medications for 2 months and some for 1 month, some they forget to put them on atall! Then the chemist has to order loads of stuff directly now which takes longer and last time, they had run out of chocolate skandishakes so just decided to give me different flavours! I had words when I went in on Wednesday. But the whole point of this rant is it so bloody difficult and as a result very hard for me to be compliant with my medication!!! I don't really want to move chemists though, they are really good at lending me medications if I run out and they know me really well, plus it's now within walking distance since we moved.

Housewarming Party

The house party went well on Sunday. I cooked a chicken curry, some saag aloo and creamy garlic mushrooms for the buffet to go alongside the cold stuff, was quite proud of myself!

About 18 people came in total which was plenty and I didn't get too stressed so all was good! I ended up going to bed before all the guests had left, I'd been drinking since 4pm so by half 12 I was ready for bed!

I missed my afternoon physio, I just couldn't figure out how I was going to do it. I really don't think doing physio when drunk is a good idea, it's a recipe for being sick! I still did all my nebs though, not bothered about doing those infront of people.

Had a big argument with Pete the day after. For some reason he seems to think he can sit and watch TV whilst I tidy up, then have a big tantrum when I make him tidy up as well! Lets just say two wine glasses were broken because of him storming around like a spoilt brat...! Anyway we have made up now so it's ok.

Pete still has his cough, he is supposed to be booking an appointment at the GP's but never seems to get around to it. I'm getting pretty annoyed to be honest, I don't want to catch what he has! Infact we have all been in the wars lately, Alfie managed to catch a claw on something and rip it too low down (dogs have a vein in their claws), the ripped claw was dangling off so I had to attempt to cut it off fully. It was like an operation! I cleaned the nail clippers with a steret and Pete had to hold his leg, then I had to have a very steady hand as it was so close to his foot, I didn't want to cut his skin. Once removed we bathed it in some salt water and I have been spraying antiseptic wash on it to try stop it getting infected, doesn't help when he keeps licking it off though! Hopefully it should be OK now.

I have being doing my voluntary work today, I'm in the process of setting up a blog for them (http://awakementoringservice.blogspot.com). Just call me the blog lady! I also picked up my prescription from the GP's, can you believe my mum found out that repeat prescription requests can be emailed to the GP's rather than dropped off?! Why have they never told me this before!!!! Now I only have to make one trip to the GP's to collect the prescription rather than two trips, one to drop the request off then another in two days to collect it. Madness!!

Here are some pictures from our housewarming party

Good while it lasted

The past few days I have felt abit rubbish, I guess it's all catching up with me and I fear I may have caught Pete's whatever he has. I'm not coughing loads but I am feeling very productive and so tired! I slept all yesterday afternoon and I'm not eating much which doesn't help with my energy levels. It doesn't help when the pharmacy ordered me the wrong flavoured skandishakes, I've got some strawberry, vanilla and banana, they are all yak! I wonder if the strawberry one is classed as my five a day?! Doubt it!

My washing machine is all up and running so I am testing it out today, there was incident yesterday when my brothers friend was drilling the wall to put the waste pipe through. A photo fell off the wall and glass smashed everywhere, luckily it didn't fall on him! Whoops! Here is my new washer all fitted, I must be getting old if I am excited about things like this

Here is a picture of the church from our back garden as promised. There is a guy at the moment doing some work right at the top, it looks so scary!!!