Rant

 It's been a while since I last wrote, and I have a few things to update you on. Last time I mentioned I had the choice whether I wanted to start dialysis, well now my blood levels are now at the point where I have no choice and it was Refiks decision for me to now start. This is my second week on it now and its already dragging. I hate it. My fistula is all bruised up and hurts, sitting there for 3 and a half hours drags. The drive to and from drags, its just horrible. I know I have to do it as its keeping me alive but I just want my transplant date to hurry up now. I have no idea how people on it for years have the patience. 

 

I'm also anemic now, so I have to have iron put through while I'm dialysing.

I am really fed up with things lately, I still try to keep positive but sometimes it just gets me down. I suffer with anxiety and depression anyway but some days are worse than others. I just wanna feel 'normal' again whatever normal is! Be able to go out and have fun again instead of being cooped up with no energy. After everything with having CF, my double lung transplant, PTLD, having a form of bowel cancer, a perforated bowel and having an ileostomy for 4 months, pneumonia and metheamoglobinanemia, a serious bout of depression and anxiety and now kidney failure I feel lucky to still be here but I do feel I deserve a break! 

 

Valentines was lovely, I stayed at Harrys that weekend, I had dialysis on valentines day, but went to Harrys in the evening, we agreed not to buy anything this year, but Harry being Harry, he spent a fortune on me yet again bless him, he is so good to me. He turned up at mine to pick me up with chocolates and beautiful roses, and then when we got to his he surprised me with even more presents, one being a pure diamond necklace! Which is absolutely beautiful. Two little teddy bears to add to my collection, a photo frame and a yankee candle shade :) then on the sunday we went to see 50 shades of grey, and had dinner in Frankie and Bennys, had my fave strawberry dacquri! I honestly don't know what I'd do without him, he looks after me so well.

Last monday, Harry and Mum took me up a&e for 5 hours as I was having chest pains, I had an ECG, Xray, and bloods and nothing was found, just to keep dosed up on paracetemol.

 

I'm still getting really tired and still have no energy, but my appetite has picked up which is good, I just hope after a couple more weeks of dyalsis I have more energy.

Decisions decisions...

So, I have been feeling a lot more sleepier and unwell than usual so last week I rang the kidney unit just to let them know and they suggested I come up the following Monday which was last Monday. The nurse I spoke to was Clare and she told me the best and last option for me now would be to start dialysis, she said to think about it.

 

Yesterday I had the access clinic which was to have a scan done on my fistula to check the flow and make sure it was all working how it should be. It was thankfully! I was supposed to start dialysis today but as I am so unsure I have another week to decide, next Monday I have an appointment anyway so I can speak to my doctor Refik in more detail abut it, I briefly saw Refik in the corridor and he basically said in so many other words he thinks now is the right time for me to begin dialysis but at the end of it, the decision is down to me. My bloods and all other tests are still the same, no better, no worse but still obviously not brilliant! So I can either start now, and get some sort of energy and quality of life back before my transplant, or I carry on how I am now - sleeping - until my transplant. 

 

Ideally I should start now as like you're thinking it will make me a bit better and give me some energy back but I'm still undecided as showing from my bloods its not 'urgent' as such. I have spoke to my family and they have different views on it which makes it harder for me to make this decision.

 

Once I start dialysis I cant just stop when I feel like it, it has to be consistent until I get my transplant which is months away. My other nurse Helen is going to ring me tomorrow to discuss it with me a bit more, I hope she can help me decide easier.

 

I am very nervous about it, as needles are involved and I have a needle phobia. It will be 2-3 times a week in the afternoon for a couple hours each time and I will have to travel up to the Borough which is next to Guys. I was originally meant to be going Queen Marys in Sidcup, but that meant changing doctors and having a whole new team and I'd rather stay under Refik as he's a brilliant doctor and I feel at ease with the Guys team so if I was to start that's where I'd be. 

 

Also, I have the PEG at the moment, for those who don't know its a gastrostomy tube which is in my stomach and I get fed overnight through it to help me gain weight. Well, I have been put on the December GA (general anaesthetic) list to have it changed to a mic-key which is the one I used to have. Its much smaller and easier just a lot better all round really. That's for the 12th December so more things to look forward to. Yay.    



Taking things further.

Today, was the appointment at guys for my results for the GFR test I had a few weeks ago. I had to use my wheelchair again as I feel so weak and drained. My weight is stable and I had another dose of iron.

 

I see my kidney doctor - Refik Gokmen, and he said results show that the levels of the blood results shown by the GFR are a lot worse than what he had originally predicted and what the other blood tests show. I thought that would of been the case anyway but this just proved that right. He also said that this means transplant should be done sooner rather than later,  talking about 2-3 months time. My mother in law Jackie who is having tests to be my live donor is at Canterbury for those, Refik said he will get in contact with them to hurry things along. No need for dialysis as he would rather go straight to transplant as that makes things a lot easier and better in the long run.

 

He also mentioned having a pancreas transplant too, along with the kidney, but this would mean having a kidney and pancreas from a deceased donor so then I would have to wait longer and plus the kidney wouldn't be as good as a live donor. I wasn't so keen on this as why fix something that isn't broken also if I have a better chance with a live donor then I would rather do that - makes a lot better sense to me that way.

 

Refik also said he thinks I should see my physiatrist Mike again as I am feeling really down. I feel really anxious all the time but I have no idea why and I feel guilty about not being well even though I know I cant help it. Just have mad thoughts going through my head right now just probably make it easier to talk through some things with him to take a load off me I suppose.

 

I am hoping I get my transplant before my birthday in April now at least, so I can be healthy enough to enjoy it properly this year. I am looking forward to not being so bloody tired all the time and I am looking forward to holidays and finally finding a job! Thinking positive is key - I can do this!

Friday night ramblings!

Well, its Friday night and just about everyone I know is out on the piss, even Harry! - except me obviously! I'm actually curled up in bed with the laptop, can't get much more exciting than that ;)

 

The past couple days have been quite nice actually. Yesterday I managed to get out for a bit, only up to Bexleyheath and even though I was in my wheelchair, I felt like I had accomplished something! First time I've been out in ages besides hospital visits. Had a good nose round the shops and got some hair bits in boots. Today my cousin and his girlfriend and their beautiful baby Paige came over for dinner :) which was lovely, always love seeing the baby.

 

Monday is getting nearer for my hospital apt regarding my results. Besides that, not sure what the rest of the week holds for me, apart from Friday its Harrys treat, we are travelling to Aldershot and staying in a premier inn for the night, for the next morning its his supercar experience! I have his birthday present arranged for the 24th but can't say too much yet - He is gonna love it!!

 

I love giving people I love presents, I get enjoyment out of it, always on my family's birthdays and Christmas I cant help but go mad - even on my little pup. God knows what ill be like when I have kids, they will be so spoilt, but I think kids deserve to be spoilt! Not in a brat way but in a good loving way!

 

Sisters at a party and is due back about 1ish, hoping she isn't drunk as she is sleeping in my room tonight. Don't get me wrong she is a funny drunk but not when I'm sleepy. Sleepy Marie and drunk Millie is NOT a fun mix!! I had a really shitty sleep last night, so I am hoping tonight is a lot better, I hate waking up during the night and thinking time has gone a lot more than it has.

 

Night night xx 

Quick update!

Its been a while since I last posted, so I do apologise for that! Quite a bit has happened in that time so let me fill you in!

 

I had my fistula fitted on the 26th June, and that healed really well and is now ready to use when I need it (more on that later). Also had my second gastrostomy fitted too, and my weight is slowly creeping up! Had my first one for 19 years, had it removed for 3 now its back but all going fine regarding that too, getting it swapped to a mic-key in December as I now have a PEG right now. Can't wait for that, as it will be so much easier, I have got used to it again already - not that I want it there of course!

 

Transplant side of things, mum got tested, Harry (my boyfriend) got tested and Jackie (Harry's mum) got tested to be my live donor. My dad isn't well enough and my sister isn't old enough - have to be over 18, she's only 17. Mum wasn't able to as she found out she has kidney problems herself, she was so upset, but like I said to her its not the end of the world, we have other donors and if not I can wait like I did for my lungs. Luckily Jackie and Harry were both matches too. They decided between them that Jackie would go ahead with all the tests first and if at any point she was unable to go ahead, Harry would then step in. How lucky am I :)

 

Last time I went kidney clinic they were saying things are 'stable' and no need for dialysis or transplant just yet, but won't speak too soon, as I feel so grotty. All I do is sleep, I have no quality of life at the moment, and I feel so down by it all. I am so sleepy and physically weak constantly I am finding it so hard to live a 'normal' life. I feel not many people understand how hard I'm finding this but then I wouldn't expect them to.

 

I am lucky I can rely on Harry and his family to be there for me besides my mum, dad and Millie. Shame goes for some other members of my family, not even a single text to see how I'm doing. Same goes for certain so called friends too. Little things like text or a phone call go a long way to me, but fortunately for me I'm not selfish or inconsiderate like that.

 

I had a GFR test last month to check my kidney function in detail at St Thomas's and I get the results on the 10th with the kidney docs back at Guys and that should tell me how close I am to needing dialysis or a transplant hopefully. I have also been given iron and EPO injections to boost energy and that has not worked for me either, I just really need something to be done now.

 

Moving on to other things besides my silly kidneys - I am now ombre :) loving it, and wanna be even lighter already! I booked Harry a supercar driving experience for early Christmas present and I think I am more excited than him :) he deserves the world for what he does for me and I couldn't be more happier than I am with him. Talking of Christmas - I am so excited! I love the whole thing - all the music in the shops, the lights, all the festivities lol. I am such a kid!! So exciting, MAYBE I'll have my new kidney by then? Wishful thinking ey!

Xx

Wednesdays appointment!

So, I had my appointment Wednesday! It wasn't too bad had some good and bad news really. First I had my weight and blood pressure done - got out of having bloods yaaay! Lost more weight again, which isn't too good!

 

Then I met a nurse Helen and she was there to give me all the info about dialysis, gave me more booklets and DVDs to have a look at, which I still haven't got round to yet. She told me I will more than likely be needing dialysis within the next few weeks, so she has organised a scan on my arm for a fistula to be fitted. A fistula is where the surgeon joins to main veins together to make it larger so its quicker, safer and easier to dialyse through. that takes up to 6-8 weeks for the fistula to enlarge so if I need dialysis in the mean time, I will have to have a permacath which I think I mentioned in my last post, that is a bit like a portacath. For the 'non CF folk', a port is a small appliance that is put under the skin and has a lead that connects the port to a vein. The permacath is kind of less permanent but that also is risky as it can cause infections which is the last bloody thing I need right now on top of everything else!

 

Then the issue of my weight got bought up again. They are really concerned how much I'm losing so quickly, I just cant help it. I don't feel hungry and when I do, I'm getting full really quickly. I know myself it is a problem but I can only but try my best which clearly isn't good enough! They have suggested I have a gastrostomy put back in, and although I am very reluctant about it, because, well I had one since I was 11months old until I was 18/19. You'd think I'd be used to it and wouldn't mind having it back, but I feel the complete opposite, I feel as though I'm going backwards, with the wheelchair, tube, not managing to go out. Plus I'm fed up of having things hanging off my stomach, when I had bowel cancer etc. But I know its for the best. The 'better' I am before I start dialysis or have a transplant, the better I will recover and I know from last time it is so much easier to be as well as you can beforehand. Hopefully will only be a temporary thing anyway!

 

I mentioned about transplant and live donors, she isn't the person to talk about it to as she just deals with dialysis. There's another team that deals with transplants, haven't yet met her but I have her phone number if I need to ask anything! From what I do know is live donor is someone who is alive and is willing to give me one of their kidneys, they must be fully checked obviously as with any transplant. If none of the live donors are a match for me, then I will go onto the transplant list, where as before with my lungs I will have to wait until a kidney becomes available.

 

I seem to have accepted this is all going to happen, which is making things a bit easier, so at least as time goes on will be less scary. I still think about it all obviously as its only early days but I've got this handled I think. It's something that is going to happen so its just got to be done!

 

Soon as I got in from hospital, it was about 2pm. I literally got changed into my pajamas, and went straight to sleep and didn't wake up until half 8 the following morning. Even yesterday, I slept pretty much all day. Been up since 830 this morning, I'm gonna try something small to eat then have another little sleep!

Also forgot to mention, the fistula, permacath and gastrostomy are all done UNDER A LOCAL ANESTHETIC. help.

Kidney update!

Well the past few months has been a whirlwind of emotions! Harry and I had a holiday booked for 9th May to the Dominican Republic, it would of been my first holiday in 11 years and our first holiday together. I was so excited, had pretty much everything ready to go apart from a few toiletries! End of March, beginning of April time I began to feel really unwell. I had literally no energy, constantly sleepy, banging headache, sickness, the lot! I was staying at Harrys that weekend and knowing I can't physically be sick due to the fundoplication op I had when I was a baby; frightened me when I actually vomited 3 times that night. He drove me back home and all that week I felt so rough, I hadn't eaten or drank hardly anything either. Turns out I had lost weight as well on top of everything else which my dietician wasn't happy with! Neither was I, but I just couldn't help it.

I had a few days where I felt 'okay' but I knew something still wasn't right, but I thought if I persevere with it, I'll feel better eventually. I didn't want to go in hospital before my holiday!

On the 22nd April, I had my routine appt. with the kidney doctor at Guys, I felt so ill but managed to make it, everything seemed fine as usual, went back home. 25th April - my birthday - had a phone call from my kidney doctor 'chow' as he likes to be called haha. He said he wasn't happy with my creatinine levels as they were in the 300's he wanted to see me on the Monday. For someone my height and weight creatinine should be 80s - 100.

Monday I go back, have more bloods, shot up again, to 482. Kidney function 10%. They start looking at dialysis and transplants when kidney function hits 15%. They admitted me on fluids for a few days just to have a few more tests to find out what's going on. I also got told my holiday isn't advisable, so we cancelled it and to say I was gutted would be an understatement. I got sent home on the Wednesday.

I watched the DVD on dialysis and transplant they gave me, trying to get my head round things, so much to take in.

I have become weaker by the day and I spend most of my days sleeping, I have gone back to using my wheelchair again and I have lost more weight now at 37kg. I am having skandi shakes and resource shakes again to help me gain weight but I am finding it so hard to eat and drink. They have mentioned to me I will probably need a gastrostomy tube back in again which I am well against right now.

I have decided the best dialysis for me would be the haemodialysis - filters the blood. This would be through a fistula, which involves a local anaesthetic where they make my own vein larger, but this can take up to 3 months to enlarge. in the meantime I may have to have some sort of pic line in my neck. They do another kind of dialysis which is peritoneal dialysis which is a tube inserted into the stomach instead and works through the bladder instead of blood. That one didn't appeal to me as I'm fed up of having things attached or something out of my stomach! The doctor said I wouldn't be able to have that one anyway because of where I had the bowel cancer (PTLD) before. 

A kidney transplant will be something that will happen but as I have people who want to be a live donor for me, they must be fully tested first and that can take up to six months, so while I am waiting for that, dialysis will help me out in the meantime. Hopefully!

I do feel so dreadful, and its not the best of situations. In fact my poxy kidneys couldn't of picked a more of a shitty time! But can't change that only work with it! So positive happy thoughts! Trying not to let this get the better of me. I do suffer with depression and I do still get some down days obviously but if I have deal with a lung transplant I can deal with this!

My next appointment is tomorrow where they give me more info and hopefully come up with some sort of plan!