Update: MRI and Anti-depressants

I interrupt my Diary of a Transplant Patient posts because this week has been the most interesting during my recovery. To me anyway...
Plus didn't have time to finalise the next entry I was going to put up: last weekend I was out of London then back for Tuesday and in time for my 8am MRI scan in hospital on Wednesday and been preparing for work stuff of Saturday since.
It's been exactly 3 months and 1 day since the operation, a milestone in a kidney transplant as the patient can finally start slowly returning to work. It also means I'm attending clinic once every 2 weeks now. To mark this, although I've been having ultra sounds to ensure everything's A-ok, the MRI should show a hella lot more in greater detail.

The MRI itself took 10 minutes: the first 5 just a normal scan, then next 5 with liquid from an external machine being added to the newly placed cannula in my arm (pre scan) to help them see the kidneys function in a different light. I could literally feel the liquid moving down my arm, into my side and into the kidney. I freaked out just a touch, then reassured myself there were people watching me and I had a buzzer in case I needed help.
As I came out of the machine, I was then informed that they (and I) had been extremely lucky as a power cut hit JUST as the MRI was finished. No idea if it was departmental or whole building.
I should get any results back on Thursday (my usual clinic day). Hopefully it'll also explain why I still ache a touch when I go to the bathroom but there's no sign of infection.

In the meantime, it seems the iron infusion and my diet of iron heavy foods combined with orange juice (helps absorb iron into the system), has made a major difference to my life.

In other news, work is slowly progressing well and I'm in damned good spirits.
This being the case...and as per the doctor's consent....I'm now weaning myself off the Anti depressants. I'm working under the theory that I'm in a good place and things are progressing well...so with that in mind, I'm now taking them every other day. As of today.
The drug I'm on, Fluoxetine, is apparently easier to climb down off than other drugs, so hopefully it'll be an easy ride. However, I'm also very aware that I may hit pockets of discomfort, have pre-warned Tom so he has an idea of what to expect...so...here goes...

Diary of a Transplant Patient Part 2

VLOG AVAILABLE HERE

Waking up

I awoke, with difficulty, in a recovery room (a long narrow corridor type ward with beds on one side and doors on the other). I recall realising I was coming to from the operation and my life was now forever changed. This lead me to tell the nurse closest to me that I was eternally grateful for everything they did. When she told me they were only doing what they were here to do, I responded, 'yes...which is saving lives...so thank you'. I remember her murmuring ‘it’s always nice to be appreciated’ as I felt my eyes closing again.

I briefly remember being taken to the High Dependency Unit (the DeWardner Ward), seeing family standing around, and then being placed in a recovery set up with monitors, desks and tubes everywhere. I was vaguely aware of the activity around me as I was connected up left, right and centre then conked out again and waking to find Tom holding my hand and family at the edges of the ward around both myself and Emily (Emily was a good few feet away which made conversation difficult as my hearing was a little off after the operation). 

I recollect needing to see her, so turned my head but still couldn't. I think possibly her mum next to her told her I was looking over, so she sat up best she could and waved, which I returned. I think there was a thumbs up in there too. Remember: the 'I think's I've dotted here and there are because I was still heavily drugged at the time and I'm working with a wavering memory and brief notes. 

After a moment of looking around and trying to wake up properly, I realised I was plugged up to the following:

1.       3 cannulas in the central vein of my neck (what was then referred to as my neck ‘ear ring’)

2.       ECG pads monitoring my heart (I think I had about 6 of these on me)

3.       A catheter which made movement almost impossible as there was risk of lying on it, tugging it etc etc

4.       A drain in my side (to get rid of extra surgical liquid)

5.       3 cannulas in my right arm

6.       An oxygen mask

7.       A gauge on my finger

[Here I'd like to say a huge thank you to those who came to see me so soon after the op. I know I must have been a sight, but I really appreciate your visit. Even if I could only manage a bit of company at the time.]

As I gradually came properly to, my body now seemed to realise I was in fact awake and my stomach decided to say 'hi'. 

I recall shouting, 'vomit', taking off my mask, starting to dry retch. A nurse immediately appeared at my side and presented me with a cardboard tray, which she held.

Then everything happened: 

• On seeing me have this reaction, Emily started to feel extremely unwell.
• Tom took over the tray so the nurse could run to Emily. 
• Having been seated for so long, then standing in a rush as well as seeing me in so much pain (my body was still ridiculously tender post op and was now being forced to physically tense every few seconds. Extremely painful), he urgently requested a seat, then lay his head on his arm on the metal railing, whilst heroically maintaining the bowl in front of my face as I continued to dry heave. 
• The nurse, now running backwards and forwards proceeded to exclaim 'what's wrong with this family!' something that now makes us giggle when we look back.

It wasn't over for me yet though as I kept dropping off, but was immediately re-woken with bouts of nausea. It could have been minutes, it could have been hours. I just remember it going on for so long. 

They wanted to see if it would stop on its own, but clearly that wasn't the case so I was finally given anti-nausea medication and the vomiting and increased wound pain finally had the chance to subside. So I tried to relax which of course, having just come out of surgery, led to sleep. 

Unfortunately during an operation, although the patient is given air throughout, the lungs no longer inflate by themselves and post op struggle to do so on their own. Each time I fell asleep feeling utterly drained, I'd be woken first by the nurses, then by Tom who said he'd keep an eye on the monitor and me. I'm informed he did this for 2 hours. The next thing I remember is being helped to sit up in the reclining bed, told to take as deep a breathe as I could, not even getting close to what I needed due to the pain in my side and seeing the consultant shake his head. I think they were trying to move me onto a nasal cannula which is the tube that goes under the nose and has two tiny cylinders peeking into the nostrils for oxygen. But they couldn't whilst I wasn't breathing properly…or something. So every 5 minutes, I had to press the miracle button of awesomeness which gave me painkillers, then breathe as deep as I could. This seemed to have the right affect and soon enough my lungs were inflating naturally.

[Due to long days and the nights being interrupted by either insomnia or further tests, 1 day and night in hospital can feel like two separate days. Therefore, the recollection of my days below may be a touch confused]

First night on the De Wardner...

...I was in massive pain, and utterly convinced there were military soldiers everywhere. I thought for the longest time, one was standing by the door. Turns out it was a monitor. My only vivid hallucination whilst I was there. Here I thank the drugs for helping me sleep…especially due to….him.

The one story I really came away with from that ward was: Two beds away was a gentleman who swiftly became known as the difficult patient, as the ward was sporadically woken throughout the nights by him pressing the alarm, then calling 'Nurse! Nurse' literally every 2 seconds for about 15 minutes...or longer. It never seemed to stop.

He’d once even threatened to climb out of bed when he wasn't answered immediately. The nurses did respond to him, but most the time it was to inform him the solution he was looking for was physically within arm’s reach.

Then again, on my first day and night on the ward, I had a personal nurse to ensure I had everything I needed directly after surgery and she was amazing. She’d be there to assist me before I even knew I needed help.

So maybe that's what he'd had on the first night and thought he was entitled for the rest of his stay.

The next morning, my blood sugar level was tested (they use a small device to snip a pin head sized cut in your finger, then take the dose from there and get an immediate result). A look exchanged between doctor and nurse and I was then asked if I had diabetes before the surgery. Nope. 

Well...I had the symptoms of them now. I actually stared at them in disbelief, and then burst into a giggling fit, saying 'of course I do!'

My sugar level being too low, I was put on a course of insulin. I asked the nurse when I could start eating (I was seriously fantasising about steak by now!!) and was informed I couldn't eat until I'd passed wind to ensure my bowels were working again. To my frustration, I could feel something there, but only the type that emerges when you move around. Which I could not. So I distracted myself with my tablet. 

By the time family arrived at 2ish, I was basically awake and myself again. On their being informed of my sugar levels, I was fed (not trusting me to take the whole dose, I guess) a weird tube of pasty gelatine which I then spent the next minute mulling over in my mouth after taking it all. When asked what I thought of it, I looked pensive then responded with a nod of 'mmm......bleh....nope'.

My family, however, are well aware of how often I eat and not having eaten for over 24 hours now, they were sure I just needed food. But they were informed of my state so now it was just the waiting game. This apparently brought out a touch of defiance in me and I apparently relaxed just enough to start sounding off. I was delighted. My parents were also delighted. I, in turn, found their delight hilarious, which relaxed me even more. And...now I could eat! Hurray!!

As soon as another nurse passed, it was mentioned again, that I needed food. 

I was asked for a third time: 'Have you passed wind?' 

I've never stated an affirmation to this fact so exuberantly in my life!

My first meal since….before the operation was soup and yogurt. Sustenance in liquid form so as not to mess with my stomach.

Everyone else popped off to grab a coffee and Tom stayed to keep Emily and myself company. Given how hungry I was, I asked Tom to slowly feed me the food as I would consume it within 5 seconds and make myself sick.

At the first spoonful, my taste buds lit up, my eyes became a little crazed and I warned Tom there was a chance I'd grab it from his hands and just down it so to be on the alert. After eating, it was obvious food was the answer as the difference in energy levels was noticeable.

Diary of a transplant patient - Part 1

VLOG AVAILABLE HERE

Approximately 2 months ago now, I had major surgery to both extend my life expectancy and help me feel better for the duration of it, all made possible thanks to Tom’s courageous sister, Emily! She kept a similar blog to me from the view point of the donor: http://kidneydonorjourney.tumblr.com/post/114414555965/long-time-no-see

During my time in hospital, I tried to keep a record of everything I went through, both physically and mentally. However, given I was in for a week and each day feels like two…it became long. So I’ve split it into sections and will (try to) post every Tuesday with a new part of the diary entry.

Any comments or questions plus corrections from family who remember differently, welcome.

[Brief shameless plug while I have your attention: On top of being an extremely generous person by giving me one of her internal organs, she’s also a ridiculously talented graphic designer and created the cover of Tom’s first book. You can see the cover and obtain a copy of the book using the links at the end of the article on this website: http://thomashbrand.com/ or via his Facebook page: https://www.facebook.com/ThomasHBrand?fref=ts]

Diary of a transplant patient

Sunday - Admission: 4pm

About a month or so before the day, I received a letter requesting we attend a particular ward the day before the operation. On arrival, Mum, Tom and I went straight there and arrived and were swiftly informed there were no beds available on this ward and I’d need to attend the one above.

The move, unfortunately, meant there was a slight administrative issue as they now couldn't find my file which had been seen last in the previous ward.

However, step one was complete: safely deposited in hospital with mum and Tom for company.

Realising we weren't actually waiting for anything and we were all just sat around anyway, I suggested they head off home. Especially as I now wanted to unwind before sleeping.

The nurse then quickly popped in and reminded me I couldn't drink or eat anything after 12am as I had to be completely clear for the operation.

After reading for a bit, at around 10pm, I finally decided to curl up and get some shut eye. That’s when I realised the woman in the bed next to me had now been talking for 6 hours. And not quietly either. Ignoring it was unsuccessful, so I finally got out of bed, peered round the curtain and informed her, politely, I needed to sleep, but couldn't if she kept talking. She immediately got out of bed and left the room....continuing her conversation. 

Getting back into bed, I was out like a light. Woke up a couple of times in the night, but that was a given so I slept sporadically, but well. The beds in the hospital were inflatable mattresses with crisp white sheets, comfy pillows and a blanket that looks depressingly thin, but was actually really cosy. Especially as they keep wards relatively warm so you don't really need anything thicker. 

6a.m. the next day...

I woke up, thirsty and hungry and seriously fantasising about pastries, but unable to have anything. Gradually, over the morning, things started to happen. First had a cannula placed in my wrist, then was given a pill, had something injected via the cannula and bands with my details on them attached to my wrist and ankle.

I was then informed that Emily was in surgery (her admission had been at 7.30am) and they'd be calling me down as soon as the kidney was removed. 

The final preparation was a drip attached to the hand cannula : an anti-biotic to prevent potential infections during and after surgery.

A chat with the doctors and anaesthetists and I was a step closer to my own procedure. By now I can't recall if they'd found my notes or created a completely new one for me, using computer based information to fill it in. But everything seemed to be pulling together. 

As well as hungry and thirsty, my lips were ridiculously chapped. I’m talking about a whole new layer of dry on them. I desperately longed for my lip balm. Not because of vanity but I felt like I had glue drying on them. Bleh! I dealt with it, however, knowing I had bigger things to come.

During this time the doctors and nurses all hovered around my bed, making notes, passing on instructions and so on. I continued to wait.

That's when the itching started. However, as I hadn't eaten in a while and my sugar level was starting to drop, I was tired and woozy and despite the back of my head itching like crazy and now needing the loo, I stopped processing logic and didn't think anything of it.

At this point I was asked if I could walk to the theatre. On asking how far the theatre was she looked doubtful and replied 'a bit of a walk'. Nope! So a trolley was called to take me there.

Finally, nature's call became more of a yell and I nipped to the bathroom. The itching seemed to have spread so I checked my stomach...and that's when I saw the rash. A small part of my exhausted brain couldn't be bothered to mention it, but watching hours and hours of 'House' the weeks leading up to the operation, I knew that everything has to be mentioned, no matter how small it may seem. Especially before major surgery.

On leaving the bathroom, I pointed out the rash and the itching to the nurses and the doctors were immediately notified....literally just as one of them came in to announce I'd been called in for surgery!!! Does my body have timing or what?

One of the nurses pointed out I hadn't shown a reaction to anything until I'd been attached to the drip which was the final medication they'd given me. They checked me over, ascertained I was definitely allergic then unplugged the drip. Cue 5 minutes of the doctor (very subtly but his body language spoke volumes), going 'shitshitshitshitshit' as the kidney was now out of Emily and they had to put it into the recipient asap.

For those curious to know what would have happened if I couldn't get the kidney, Emily had been given a form to sign prior to the surgery. This came with 3 possible options:

1.     Return the kidney to the donor (can't be done after it's been placed in someone else)

2.     Give it to someone else

3.     Bin it

Tom, Emily and I stared at the form: 'that's an option?! That?? Yeah sod all the other people waiting for one, let's get rid of this fresh, really healthy one'.

Anyway, the doctor came back every few minutes for 5 minutes, checking my breathing and confirmed my throat was not in fact closing up. The white arm and ankle bands I've been given were replaced with the same, but now in red, so if anyone saw it they wouldn't try the same thing again.

Finally the trolley to take me down was brought in and here the doctor got a touch more urgent, asking me how I was feeling. I told him as gently, yet as defiantly as I could that the itching had gone down, I had no problem breathing and I should be fine. I even took a couple of deep breaths then grinned at him.

Then they received another call to notify the doctor that they had another range of antibiotics down there and to get me there asap. I laughed when I realised they'd just happened to use the one antibiotic I was allergic to. Which I discover literally minutes before my operation. Beautiful.

So we get the go ahead, and I was helped onto the trolley due to now basically having no strength. 

On arrival, I was pushed into a preparatory room just outside the operating theatre. Here I met two very cheerful nurses plus the anaesthetists from before.

Hooking me up to the monitor took 3 attempts as it wouldn't take easily and when it did, one of the nurses said ‘yay! She’s alive!’

At this point, they turned away and I found myself getting emotional. Nopenopenope! I was to stay calm and relaxed. If they saw me get upset and reassured me, I’d’ve gone off on one.

On turning back to me, a mask was slowly put over my face, causing me to cough as it poured some almost flavoured air into my nose, shocking my air canals then watched as the final liquid was injected into the cannula in my hand, thinking ‘this is it’.

I remember watching the world first blur, then heard a faint voice say 'she's nearly there'...and I was out.

Another procrastination post which involves and update

As mentioned in the previous post, I'd been hoping to publish a longer, diary style entry since leaving hospital to detail my experience as a renal patient. Notes have been written, but it's been a challenge sitting at a computer desk or even on Tom's laptop when he didn't take it to work, so that entry has been delayed.
Whilst I tidy up this entry, I'm attempting to sit at my pc as a test to see how long I last before my side aches. So far so good.
In the mean time, however, here's a general update on how things are.

At first glance

I've been told there are some clear differences in me, starting a couple of days before I left hospital:

Physically - I feel different. Yes I still have some discomfort verging on occasional pain in my side (I'll get onto that later), but otherwise, I feel more awake and there's a noticeable difference in my physique too as it seems before I wasn't retaining water and my appetite was waaaaay down during the deterioration. I hadn't noticed that as I've always had a small appetite, but yeah that's now changed.
I also feel physically more awake as I've been fitted with a new filter so my body is now removing all the toxins in my system.

Mentally - I'm more awake, more focused and my concentration levels are up. The weirdest part of all of this is that I'm actually noticing things I hadn't noticed before. I recently saw a photo of someone which I'd seen several times before and when I saw it again for the first time since leaving hospital, it was as if a veil had lifted and I suddenly spotted something else in the picture I'd not seen before!
Driving down the street, I look up, see something and tell Tom (who's still driving me around) that I've spotted this thing. His reaction: 'well, yeah we've passed that several times. Have you never seen it before?'
It's an amazing feeling and I didn't realise just how clouded my mind was....
So yes...seems I'm back to my old self before all this kicked in, with the added bonus of some life experience over the last 5 years!

Twice weekly clinic visits

I've been attending the clinic with mum now for 2 days a week (Mondays and Tuesdays) since leaving the hospital. With mum because the hospital is 15 or so minutes drive from home:

1. we walk in and quickly find two seats together if we can (that hasn't happened only once)
2. I register at their machine then sit down and prepare to wait (the shortest wait is usually 2 hours, the longest about 4). We've always gone in early, then decided to start going in later which is actually a worse idea as the doctors/nurses then pop out for a quick lunch so appointments are delayed. It's always best to go in earlier we've now learnt.
3. I get called up for weight, blood pressure and to give them my earlier prepared urine sample which I get before I leave the house (no worrying about pressure to go at the hospital then. Also, if you find you have to give urine samples frequently....especially if you're female...funnels for the win. I'm not kidding).
4. Along with the new urine sample bottle, I get a ticket with a number
5. I then sit and wait again, watching the number monitor above our heads. 
6. My number comes up so I go and give about 4 vials of blood. Now I can take my adoport (immuno-suppresant...taken after the blood test as they need to ensure I'm on the right amount).
7. Then another wait for my consultant appoint. I usually see someone different every time, but if my original doc is there, I see him. During the waiting times, doctors and nurses walk around calling out the different names of the people they see next. Sometimes repeatedly as the waiting room can be loud or the person just a touch distracted/deaf. I've heard the occasional doctor or nurse practically mumble a name and think 'yeeaahh they're not going to hear you, try louder.'
8. See consultant, go over what drugs I'm on, any changes I need, any questions I might have etc etc, then pop to the pharmacy....which usually increases the visit by 40 minutes. But I luckily don't need to attend every visit. 

(Sitting at pc progress: everything fine so far)

Mum and I are now fully prepped for these visits, so we take snacks, a book, our tablets and anything else we might need (need because we can't go with a suitcase worth of time passers so we're careful with what we take. Plus we tend to make our own entertainment whilst we're there and end drawing looks as we try and stifle the fact that we're cracking up at something ridiculous. In Spanish.

I enjoy this waiting time as mum and I just sit and chat like two idiots. Only two things frustrate me about these visits:

1. when the waiting time passes 4 hours....then I start getting edgy as I need to put my legs up or do something varied but can't risk leaving in case they finally call for me. 
2. People who talk to you...not because they want to pass the time so they interact with you...not because they're pulling me away from my entertainment. God no. I actually enjoy hearing what other people have to say. Except one patient. Who initiated a conversation with me....then had me swiftly end it by going to the bathroom when he started slating the medical care he received here and the bad service he got from both doctors and nurses....and saying this hospital had third world equipment. This riled me up as I've received excellent care from all staff, the equipment helped my quick recovery and if ANYthing happened to anyone they were immediately on the case. Not to mention this hospital has one of the best care and equipment around. And I'm not saying 'he probably had a different experience to me'. I saw how the doctors and nurses were with the other patients. Including the more difficult ones. As this was a gentleman who couldn't be diplomatically argued with as he made a particular case against the female nurses, I bristled, head off to the bathroom for a breather then returned and immediately started talking to mum.

Other than that, the clinic visits aren't half as bad as I thought they'd be. And it's actually a pleasant surprise when they're quicker than anticipated.

Staple stitches.

I've now had these completely removed. When first installed, it looked like a long zip down my torso in a slight curve. As time passed, they gradually began to separate and slowly pinch, especially where the skin had partially grown over some of them.
I've taken photos of my scars progress once I got back to Hertfordshire, but decided against posting them up because they look a touch....icky. Not gross icky, just not pleasant.
The removal of the staples took 2 days (every other one removed one day, then the rest, the next appointment day) and the nurse amazing. She used this tool:

I was a touch unnerved watching her set up, but honestly...I barely felt the process. The only ones I did take note of (2 maybe 3 of 30) hurt because the skin had healed partially over them. Otherwise I felt pretty much nothing. That said, I now wonder if that's just cos the last few months and possibly year have increased my pain threshold. I'm now informed, if the pain effects your sleep, then it's high. If it's not and you sleep well despite it, it's just achy and not that bad.
The next day, some pain did kick in as my skin suddenly realised it was free to regrow, so that was a particularly achy day of not moving from the sofa.
Having the rest removed and the dressing now off...simply amazing. And I could have a proper shower again. I could shower with the dressing on, but I was too worried about water somehow getting passed the water proof bit. Though that's when I learnt not having a proper shower in a while means skin goes 'nnyyaahh hothothot' despite turning the water down unusually low.
I think I count the first shower I had without the dressing on as my true first shower at the hospital.
Bliss.

Now - Meds and General health

Meds

ALL THE MEDS: This is everything I was given on being discharged from hospital so some of those boxes are just repeats of each other. I think I'm on about 12 a day at the moment? That blue case at the bottom carries a box for each day of the week and the boxes themselves are separated into 4 (Breakfast, lunch, dinner, evening).

Discharged from hospital and straight to sorting out meds:
A full fill up and calculating how much I have left takes about an hour.

(Sitting at pc progress: back now giving a slight dull ache. But so far manageable)

I'm still on all of the meds, bar the Paracetamol unless absolutely necessary (I was on two pills every four hours, daily). I'm off my once-a-day anti-coagulation injection. Now on soluble aspirin instead, which I dreaded (hate soluble meds), but it actually doesn't taste much and the injection wasn't entirely pleasant so not complaining.
I should slowly but surely start coming off my medication until I'm down to just Adoport (my immuno-suppressant drug which I'm on forever more unless there's a massive progression in renal treatment). But not for a while yet. The only drug I have issues with is an anti-fungal medication which...prevents fungus in the mouth for the first month or so. It's in liquid form in a small bottle I have to measure 5ml of....daily. It's...fairly gross, but the thought of getting mouth fungus which is worse to get rid of brought the trooper in me out! Anyway, I should be stopping them on the 23!

General health:

• I've a tiny varicose vein in my right arm at the elbow which means that part of the vein has hardened. I barely notice it apart from when my arm feels a little stiff and I need to exercise it to loosen it, or rub the blood flow in my arm. Fortunately some of the main bruising I had in localised areas of my right arm have now gone down and I no longer look like I've been protecting myself from violent attacks. 
• Since leaving the hospital, I've been dealing with the odd headache, which paracetamol didn't come close to knocking out. There were points I was so uncomfortable, I was seriously tempted to pop an ibuprofen (bad!). However the solution, I soon discovered, was glasses. I realised my eyes felt far heavier and more sensitive than before, so I popped on my glasses and the headaches dissipated. I still get the occasional back of the neck ache, due to my blood pressure adjusting, but the glasses help. Though I do need to get an eye test....
• I'm now using a walking stick. Since having the staples removed, I've noticed difficulty in walking and putting equal weight on both legs and hips and had started getting a dull ache on the right side of my torso around the kidney. 
  
  I then went out for my first solitary walk the other day, was 15 minutes in when I realised the pain was rearing its head again. I've been able to walk further than that with no issue...what was happening now? It then occurred to me that this was the first time I'd gone for a walk without having someone to lean on. Mentioned this to the doctor who made a couple of physical observations around the scar with his hand and then booked me in for an appointment to have an ultra sound the next clinic visit. Went in to encounter the shortest waiting time yet due to less patients due to less staff so finished 4 hours earlier than anticipated. Tried to snag a cancellation but was informed they were particularly busy so not to be expected. Sat down with mum and prepared for a looooong wait. Now, the advantage of being a post transplant patient is your case gets considered priority. around 2.30pm, I had the nurse come up to me, inform me that she'd called someone and they'd explained the purpose of the scan so they were able to wrangle me an earlier appointment. I was seen soon after. So turns out there are two slight issues:

1. For some reason, my stent (a device used to keep the connection between the kidney and bladder open until I'm fully healed) is lagging slightly and isn't draining all of the urine out completely. So far...this isn't a problem and the doctor would go into more detail the next time I saw him (that Monday).
2. Apparently I have a number of bruises around the area of operation (I think it was either 4 or 5) which need to be looked into. This was causing the faint bruise I can see in my hip area and a hardening of the skin just above that. Concern flashed in my eyes and I asked him if it was something to be worried about. He looked at the scan and said 'well I can confirm I don't see any pus and you're not running a fever, so I don't think there's any reason to feel concerned. The doctor will explain more when you see him'. On top of that he didn't send me to any ward or clinic as an urgent case, so I'm sticking with the fact that it's all ok and just needs to be checked by the doctor. 

However, this now means that walking properly is difficult for me as I can walk normally for a bit, then the bruises start to rear their heads and I feel heavy and uncomfortable. So...I got myself a walking stick. Mum observed immediately how much better I was walking. I don't use it as a muscle substitute, but more as an 'arm to gently lean on' when things start to get a bit much. This way I still use both leg and hip muscles equally without relaying on my 'helper' too much. 

Especially as they tell renal patients to walk as much as they can to help the healing process and I'm now struggling to!

All in all, apart from that, things are going well and my specialist is pleased with my progress. I also get a tiny amount of pleasure from informing people in the hospital I had the operation a month ago as they do a mini-double take and proclaim 'Really?' and I'm fairly sure a couple of them have looked at me as though I'm playing a prank on them. I've resisted the urge to show them my scar as proof...thus far.
However, this also means that I'm impatient to do things. I feel like I want to get out there and start doing things again, but I then have a little voice in my head which sternly states 'You've just had major surgery...and your using a walking stick. Chill'.

And I have to listen to it....it's already given me 'that look' three times.

A little extra since the above was written:

1. I was told the bruises are in fact liquid build up and the stent may need to come out sooner than anticipated. I was also told these are two separate things.
2. Yes, the stent is in fact coming out sooner. I've got to be in hospital for 7.30...in the morning. Fun!
3. I have a cold: my ears are a touch stuffy, my throat aches but isn't causing me problems and I'm sneezing. I actually think it was worse yesterday as my sinuses were clogged. Despite all my precautions, it was inevitable really. As I can't take over the counter medications without talking to my doctor first, I'm now just eating all the oranges I'm allowed, drinking warm ribena with ginger and a hint of lemon and getting all the rest I can with the odd short visit outside for some fresh air. As long as it doesn't progress to a chest infection or fever, I'll be fine. And lo, the home thermometer I bought myself comes in handy!

She's baaaaaaack

The 9th February saw me in hospital for the long awaited transplant. Tuesday a week later saw me back home.
Transplant to discharge took a week.
Pretty impressive if I don't say so myself.

A week later, I've been at home with my parents and to 2 clinic visits. Well....3 if you count today's.

This entry is no where near as long as I intended my first entry out of hospital to be, but the foot long, stapled scar across/down my torso makes it difficult for me to sit at my computer desk for long enough (I'm writing this on my mobile as my tablet is currently plugged in and out of reach). So at some point in the next month, I'll be entering a diary style post of my experience in hospital.

In the mean time here's a brief update:
1) I'm now on all the medication ever including 2 injections (1 daily, another 3 times a week).
2) stomach still going through some discomfort as the scar heals and staples adjust.
3) I've developed deep vein thrombosis in one vein in my right arm which is apparently completely normal and should disappate in a few weeks. But gives me a dull ache.
4) I had a touch of all over itchiness, which was my liver reacting to the drugs, but that's now passed.
5) and most importantly...my donor left hospital a couple of days before me andis doing very very well

My mind is more focused, I remember things with more ease. I'm a little tired as I slowly recover, but otherwise I no longer feel the need to nap. My stride is a hell of a lot slower and calmer as I can't rush.
But.....it has to be said....Frankie's back.....

More to come. This is just an entry to announce my triumphant return to society. Well....out the hospital anyway.

2 days and counting

Preparation packing....kitten unfortunately not included

Bag is packed apart from a couple of essentials I need to use before I head off, mum has my new slippers and cardigan top for me and Tom is now off work for the next few days til he's sure the operation went through without a hitch. It was his arrival back home that really made things click and on Friday night, I got a touch edgy and nervous. Until now, things have been a touch...surreal. Real but kind of in my periphery, which is why I had an attack when we went to do the physical assessment.
And now....the operation is rushing up...and happening soon. As of 4pm tomorrow, I'm going to be in hospital.

Had a bit of an end of an era moment this morning as I realised, tomorrow will be the last time I take just 4 simple tablets from this selection. As of next week I'll be on a butt load more.

My currently mini meds kit and thermometer

I want to use this post to take the time to thank Tom for everything he's done for me. It's been a ridiculously difficult ride these last 5 years and I've, on occasion, purposely taken myself out of the scene by going away for a few days to give him some breathing space from worrying about me (I can't escape this, but I can at least help him).
It's been difficult for both of us and although I've been on anti-depressants and in counselling for a while now, I've been urging Tom to take up counselling too, knowing how difficult it is to handle a situation not only out of your control, but also having to deal with the issues of the person you care about when you can see them in both pain and emotional distress. And there were points when it was taking it out of me knowing he had a boulder to push up a hill, almost daily, only to have it roll back on him when my mental went into self-destructive mode and I struggled to control it myself.
Tom's now been having counselling for a couple of weeks and I encouraged him into using an app I'd previously used to do some really basic yoga (and yes, I checked with him before posting all this) and the difference....is noticable.
It's been a huge challenge...for both of us...me going through this and him having to watch and help out the only small ways he can.

So thank you, Tom...for being there...for everything. Including the floods, the volcanic eruptions the tornadoes of doom and any other natural disasters you can relate to mood swings.

Here's to an easier time after my full recovery....

Another not unpleasant pill to swallow....

VLOG AVAILABLE HERE

A 4th pill has been added to my collection...because why not!
Went to Watford General on Friday for the last time. It's not the last time I'll be seeing the specialist, but the last time I'll be going to Watford's. From now, I'll be going to Hammersmith hospital which actually has a fully funded renal department. I've been going there for 3 years so....bit of a shock to the system as it was the end of an era for me...

Usual general update, though this time, I informed him that breathing is becoming harder for me: a thicker sensation than usual with tightness at the chest, an active feeling of not getting the full oxygen supply I need.
So my doctor looked at the X-Ray from my physical assessment and, much to my embarrassment, confirmed no trace of Pleural Effusion. Embarrassment because I hate self diagnosing, but considering I'd forgotten to mention the lack of breathe until that appointment, in my desperation, I'd looked online for possible causes and this matched up. So...my bad. I do not in fact have PE.
Tom has now banned me from medical websites which I've been consulting more and more in the build up to my op. Given my embarrassment at doing the one thing I said I'd never do and did in subconscious panic...yeah fair play.
What I have...is failing kidneys. In my case, it's a sodium issue. Yes, the doctor told me I can eat more salt, but apparently it's not enough anymore. My body doesn't retain sodium which means it doesn't do the required oxygen conversion it actually needs to...y'know...live.
So...I'm now on Sodium Bicarbonate pills....4 times day.
As I took the first 2 of the day, I realised that if I need to pop them 4 times a day, I need to carry them with me AND might not have water to hand so need to take them without assistance. It seems after watching episode after episode after episode of House (I'm now on S5 episode 23), I'm slowly starting to emulate House himself: I'm ill, mildly irritable on my worst days and I've started popping pills to ease my discomfort.
Yup. Just gimme an IVF I can use as a walking stick, take away any social anxiety and any social filters, give me the fast working brain of a genius....and you won't be able to tell us apart.

Another way of looking at this is that I'm slowly but surely warming my body up for the packs of pills I'll need to take in the future (it's going to be a lot): I started on 2 (blood pressure control and vitamin D) plus the injections for anaemia, rose to 3 with Anti-Depressants and now a 4th to help me breathe....my 4th musketeer. Technically there were 3, but yeah. Technically...the Anti-depressant works more on the chemical reactions of the brain not my body. So I guess that's the 4th musketeer.....huh.....

Anyway!

Now the main question is, have the pills worked? That's a big yes. I've still got a slight tightness in my chest, but even Tom's observed that I'm happier and busier around the house again...because I can breathe with more ease.
On top of that, I've realised this may also help subdue my anxiety attacks which have risen in frequency again...because I can take deep breathes again. So that's a plus.

I'll admit, I've been fairly blase about my pills in the past, and although I had alarms, had a bad habit of pressing 'snooze'. However, now I've got one which helps me breathe, I've set up 6 alarms my phone:

1) regular daily pills
2) same pills but on the weekend (set at a later time)
3) 1st new pill of the day
4) 2nd new pill
5) 3rd new pill
6) 4th new pill

It's now kind of helping me get in the habit of keeping an eye on my meds....now because I've not going to be able to miss the post op ones I'll be given to...y'know...keep me alive...

An interesting side note: discussing the latest symptoms, my specialist mentioned that as these had arisen, we'd now start looking into a transplant for me on a more urgent basis. So....good thing I have one lined up now.

Good times...

8 days til Admission
9 til surgery