Transplant Date!

Finally! I really can’t believe that I finally have a date for my live kidney transplant from my Dad.It’s going to be mid February 2017.

While I really hoping for a date like next month so I could start my new graduate nursing job in 2017, I knew it was most likely not going to happen, so I’ll be taking the year to recover, and be starting in 2018. This is probably the best option honesty, as I can take as long as I need to recover, and not stress about being well enough to start a new job. Plus my Mum’s work is less busy after February so they’ll be happier when she starts the month off to look after me and keep me company.

So my life plan at the moment is to finish uni for the year, (and pass everything), and work as much as I can until the transplant in February. Then all have a bit of money to tide me over while I’m not working, and hopefully still have some savings at the end of it. Not working for several months, and still having to pay bills adds up to a lot. Plus I’ll also have to pay for food while I’m staying at the accomodation near the hospital for the month. Then have to surgery, recover, start work again at some point, make sure my endurance is still good, and start my nursing position in 2018.

I’m also still going to be on the waiting list while I wait for the live date, so who knows I might get one before I think?

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Kidney Transplant Expectations

As I move closer to finding out a date for my transplant I thought it would be a good idea to jot down so ideas of what I expect the transplant is going to be like for an after comparison.

I guess the first expectation I had was that it was going to take a long time to do the work up. But in reality it took even longer than that. I remember hoping to have the transplant done this time last year. So it’s taken an entire year longer than I planned.

I’m expecting to wake up feeling terrible. I don’t think it’ll last long, but I imagine to start with I’ll be in a bit of pain, and generally feeling tired and gross, and not wanting to get out of bed.

There will be a lot of tubes. Urinary catheter, IV lines, drain lines, as well as my PD dialysis catheter will still be there in case the kidney takes a bit to start working (or doesn’t work at all).

I will be in hospital for two weeks, and then close accomodation for a month because there will a lot of hospital appointments. I’m thinking two months before I feel mostly recovered, though this could be completely wrong as I’ve been advised 3-6 months.

I’m not expecting to feel amazing different. I know lots of people say they wake up feeling completely different, but I really not expecting it. Mostly because I don’t feel any different to pre-sick/dialysis Brooke. I am hoping to be a little less nauseous, and sleepy though.

Hopefully my blood pressure will resolve- then I can stop taking four different medications for it. But they will be replaced by the anti-rejection ones.

Peeing will be annoying. Over the last two years I’ve become accustomed to peeing very little, as well as only drinking 1L a day. Just keeping up with the drinking and peeing schedule is going to be difficult.

xx

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2/10/16 – New Job & Transplant Dates

A few major things have happened in my life recently. First I got a job! Since around June I’ve been in the process of applying for the new graduate nursing program my state has for all the public hospitals. Honestly I didn’t think I did too flash in my interview, so I wasn’t expecting to be offered a position. And then I was rejected for even an interview for the private hospital, so I thought I had very little options. But I am very happy to say I was offered a full time position at my first choice hospital for the year!

Now I just need to be healthy enough to take it. My dilemma is this: A transplant takes several months to recover from. Or more honestly it’s not that you need to physically recover, rather that there’s just so many appointments to go to to make sure the kidney is working, and not rejecting. It’s two weeks in hospital, then a month at a hotel next door to the hospital as you have to go in for a check up everyday. After that I’m not too sure how demanding the appointments are. But in a nutshell it’s at least six weeks of recovery.

Uni finishes around the 18th of November, and plus six weeks comes to the beginning of 2017. That doesn’t sound too bad. But there are many little ‘but’s. But recovery could take a lot longer than I think. But I’m not sure when the job would start- it could be in January, it be in April. But I doubt the hospital will give me the date as  it’s already October now, and it always seems to take some long. My coordinator has vaguely mentioned early December, but even that date is an extra 1-2 weeks, which pushes my recovery an extra 1-2 weeks.

I’m starting to entertain the possibility that I might have to choose between getting a transplant or taking this job. Most people I mention this too respond with ‘Put your health first’, but it’s really not that simple. I have worked hard for my degree, and job, and as it’s a new graduate position I’m only eligible to take it next year. Plus as dialysis agrees with me most of the time, I start wondering if another year wouldn’t be so bad. After all, mostly it’s just time. And I would have a valid excuse to not do night shift haha.

Also as you probably guessed, if you read my last post, all my lungs complications are ok now. I went to another respiratory specialist, and they were completely fine with heading ahead with the transplant surgery. Apparently the treatment I had worked so well everything is reasonably ok again. Also as a huge plot twist they mentioned that previously my lung function was so bad they were considering giving me a lung transplant at the same time as a kidney, which came as a huge shock to me. My breathing didn’t feel anyway near that bad. Luckily a few weeks of antibiotics and prednisone sorted everything out, so it’s nowhere near a consideration now.

All in all I’m just waiting for my coordinator to get back to me about dates, and hopefully it’ll all work out.

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Life Update

Woah it’s been a long time blog!

Recently I’ve being getting a major motivation streak with cleaning, social media things, and motivation. It’s great. I love waking up and just feeling ready to get into the day, and happy about life.

A few things have changed since my last post at the beginning on 2016. I got a job in May as a home care worker. I was ridiculously happy to get a job as it felt like the final piece in getting my life back on track after initially getting sick/kidney problems/on dialysis way back in November 2014. A few months before that I was in the process of getting a job, after taking a break from working to concentrate on university, but it all went on hold when I sorted out my life, and recovered. It was a long time before I felt physically fit enough, and then I had to find a place to hire me after having an extended gap in my employment history. But after months, and feeling like it would never happen, it did!

I also started my final session at university of my journey to become a nurse. It’s taken a year longer than I anticipated, but here I am writing my last couple essays, and beginning my last stint of clinical placement on Monday. Definitely wont miss the blocks of full time unpaid work.

On the dialysis front everything is still going great. I’ve being doing PD for around a year and a half and it’s still working great. The transplant from my Dad is most likely happening in November of this year. I’m having some respiratory problems that is holding it up, but it still sounds hopeful to happen in November if it is all is sorted out. My Dad is completely prepared on his side. I know the estimated recovery time, how long I have to stay in hospital, and then at accomodation in Sydney across the road from the hospital, so they can keep a close eye on me. It will be a pain to not be able to go home (and boring), but I understand, and am thankful they are thorough.

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Another New PD Machine

Yes another one! This is my third in a little over a year. I swear I need a new one every six months.

This one didn’t even have a system error, it just completely refused to turn on, and smelt like a blown light globe, so I thought something was definitely wrong.

I tried to ring Baxter supplies (the Australia based company I do my stock ordering from, who I never get put on hold for), as compared to Baxter tech (the American company that deal with the system errors, can take a while to get onto to, and try to ask my mobile area code, when all Aus mobile numbers start with 04).

It didn’t work, so I had to wait on the line for American for 20 minutes just to have the Australian company call me later that day to confirm my delivery, and a lot of people asking me if I just hadn’t plugged the machine in.

Either way Baxter are very efficient, and got a new machine to me the day after, and they even offered to send me one that day if I really needed it.

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Extended Family, Dialysis and ‘Sick’ Reactions

Wow it’s been such a long time. I’ve been thinking about this post for a while now, and it’s about time I posted it.

Over Christmas I stayed at my parents house several hours away with around fifteen of my relatives. My sister was kind enough to lend me her room and bed for ease of doing dialysis (it has more room, and is cleaner, and warmer than the spare room), and I spent the trip going to bed a lot earlier than anyone else so I wouldn’t hold them up in the morning.

It was an interesting experience. I’m still a little embarrassed carrying the big 15L drain bags out to the bathroom in the morning, though I’m not really sure why. It’s interesting seeing how a single person new to seeing my dialysis process reacts, but there was fifteen new people all at the same time.

The two reactions that stick out to me were almost polar opposites. One of my cousins was really interested and wanted to know everything. I was really impressed with how much she considered how everyday life is affected. I find a lot of the time people are shocked at the length of the treatment (9 hours everyday), but don’t consider things realistically. While this cousin wanted to know how I fit the boxes in my room, how I get the supplies, and if the PD exit site was an open wound. The questions reminded me of the all the things I had considered before I knew how everything worked, and it made me feel like she was really considering what my life was like, rather than just thinking about how terrible she imagined it to be.

While another one of my cousins was the opposite. Every conversation we had would revolve around my health- which by itself isn’t a big deal. Most people I know ask me how I am health wise simply because they care about me, and it’s a big thing in my life. The problem was the health conversation was the only conversation we had. It was like the only part of me that existed was the part where my kidneys don’t work. After a while, another relative stepped in and suggested he ask me about something else, like my university studies.

It seemed like he was projecting his ideas on how bad he thought dialysis was onto me. There was a lot of loaded questions asking if I’d gotta over different things, like it wasn’t even an option that I simply accepted things. He also kept touching me without permission trying to find where the tube was positioned on my stomach. It make me feel bad, simply. I didn’t want to talk to him because I felt like a walking illness, and sometimes I just don’t want to talk about my health.

But it made me think about all the different ways in which people react to illness. Having kidney disease has been interesting in discovering all the ways people deal with your illness. Some are unchanged, some open, others think you don’t want to talk about, and others don’t know how to act. It’s like this club that you can’t join until you’re sick. And then when you’re in it, you don’t understand how people don’t know what to say. Now I just try to tell people that you don’t suddenly change when you get sick, and I’d guess when other major life events happen. How you imagine you act, it’s probably pretty close to how you would, so stop not knowing what to say, and just say what you’d want someone to say to you.

Mostly you just have to take it with a grain of salt, and some humour.

 

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Just a Little Post to Say..

I haven’t had to go the renal unit in two weeks! It’s a little crazy when I think about how often I have to do something at the hospital, so I kind of have a little celebration when I being able to have a little break. I forget how much time I put into my health sometimes.

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Live Donor Feels

I recently had an interesting Skype call with my Mum concerning how my Dad’s going on his work up to be a live donor for me for a kidney transplant.

Firstly it was very weird to even find out I was a person that could potentially get a transplant. A transplant was always an abstract thing that I heard about, but didn’t consider it in any real way. When it was first became something to consider it was weird. The idea of waiting for a deceased person kidney was an ok idea because it was an abstract time frame of 3-4 years minimum- plenty of time to get used to the idea, and the also get really really sick of dialysis, to the point that a transplant sounds great.

But when members of my family put their hands up to be considered as live donors it made me feel really weird. The idea of using a kidney of somebody who no longer needed it sounded ok, but the thought of having to put my family members out, literally taking one of their organs was so strange. Over the course of this year it something I’ve had to get used to the idea of. And I have a lot more, mostly by talking a lot about it until it became a normal thing to talk about.

It didn’t really think at all about how my Dad was feeling about it. My Mum was telling me that she was having to get him used to the idea that we might do all the tissue matching and come up an invalid match. He seems to be in denial that he could do all the testing and not be a match. It’s kind of interesting that the healthy person in the equation would take it the hardest, but I think I understand. There can be some many things to consider with a transplant, and it makes me begin to understand why the process takes so long.

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Transplant Work Update

I was just reading an old post I’d written about transplant working things, and was amazed it was around 4 months ago! It’s crazy how long this process take as I don’t feel like I’m much further along in that time.

I’ve done all my tests, which included:
Dopplers on a few major veins – Very easily done, just had to lay there. Also had a nice students doing it, which lead to a conversation about studies as I’m a health student too. They also thought I was pregnant for a few briefs moments, which was not as relaxing for me.

Chest x-Ray and renal ultrasound – These were done at the same time at my local hospital. They wanted me to come in with a full bladder for the ultrasound, which is a little impossible if your kidneys don’t produce urine, so cue a few awkward conversations with receptionists that I had to explain this too. The ultrasound was also a bit strange so I’ve had to see a urologist about it, and have a CT and cystoscopy, which I’m still completing.

Bloods and ECG (or EKG is you’re American) – The bloods were done at my renal unit, so I didn’t have to wait at all, but the ECG I had to go to a normal pathology place, and it was packed. Surprisingly I didn’t have to wait for long, but I’ve never had to specifically go somewhere for an ECG before- it’s always were done as apart of something, or at the renal unit. The pathology place I went was also were I went for another test before I was diagnosed when I wasn’t able to get food down, and the lady I saw then was very rude and keep acting like I purposively not acting, was going to not do to test properly, and basically made me feel terrible when I was already in a pretty bad way, so I wasn’t really keen to go back there.

TB skin test – Had to go in twice- once to get to solution injected under my skin, and another for it to be checked. Relatively simple, though the nurse was abrupt when asking questions. She wanted to know if I’d lost weight recently, and when I said yes, and went to explain why (i.e. my kidneys had stop working, and I almost died), she didn’t really want to hear it.

Dental review – Got my dentists to email my last clean information to my coordinator

Cardiac echo – Decidedly not fun. I discovered how unfit I now am, and hopefully will not have to find out ever again. The staff were also not great. It was basically me speed walking on a treadmill with no shirt on and an open at the front hospital gown. Which I really didn’t think was necessary. I wouldn’t have been hard to loosely tie it up, and then undo it later when needed, and they kept telling me to leave it open, so it was me standing half naked for no real reason, and all these people keep coming in and out of the room. They also didn’t tell me that they wanted me to lay back down on the bed straight away, so when I finished it was a weird half being pushed to where they wanted me to go.

Pap smear – It was generally like a pap smear. Not particularly comfortable, and you’re glad it’s only needed every two years. At least this time the doctor did it right.

So after all of this I saw two transplant surgeons/doctors who come down from the Sydney hospital where they do the surgeon. One of them said I’ll probably had to go on a different type of anti-rejections medication as my kidney biopsy I had done when I said got sick showed a weird tissue, which could turn into a different disease thing, and the usual medications make it more likely. It’s half an ‘oh great, now what’ moment, and half doesn’t sound like a problem. I don’t really know when I’m going on the waiting list as I’ve done everything I think I need to, and my Dad has made appointments to see a transplant coordinator in Canberra (as they live a bit away from me, and it’s closer for them. Plus they can’t see the same doctors as me anyway), as well as done a few bloods tests. I think were going to begin tissue typing blood tests after he’s seen his doctors, and you never know I might actually get a transplant next year if all goes well.

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A Post About Money

I was reading a newspaper article from my home town about a girl who has discovered she has cancer and it mentioned how expensive treatment is. I was a little confused about that as I live in Australia and most medical treatment is Medicare/government funded. The only things I have to pay for are medications, and extra bits like hand wash and paper towels. Which I think is a pretty good deal considering how many other countries have to pay for an awful lot more.

But it got me thinking how much I’ll actually pay over a period of time. Articles and things always say it’s expensive, but not really any specific. I get its all really dependent on your treatment and all, but I would like a rough idea. At the moment as I’m a uni student I get a health care card with no questions asked, which entitles me to receiving all prescriptions at $6.20 each- even the hospital based ones. (On a side note my local pharmacist was telling me that if you get EPO/aranesp outside of the hospital it costs around $400!!) That makes my medication spending $30 per month. Doesn’t sound too bad. Price of a coffee and a muffin a week to keep me alive, eh? Even $360 a year doesn’t around too bad, though I would have preferred to use it on something else entirely.

But it’s all perspective. It could cost so much more. I know I’m on a limited amount of medication to what’s normal. When I first got out of hospital I remember paying $200 for the first lot of medications, before they were scaled back severely. I know that if I wasn’t on a health care card I would be paying more like $85 per month. That would $1000 a year, $4000 over the four years it would probably take to wait for a transplant, and then the multiple anti rejection meds there are to take. 

All in all it’s very frustrating when I think about having to find the extra bit of money just to be healthy, when there’s so many other things I would rather be spending it on.

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