Thursday, 19 March 2015

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.

Now - Meds and General health


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'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 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!