Well, of all the ways a council meeting can go, having your wife rush in and cry out “the hospital’s rung and we have to gooooo!” is not one I would have scripted. But, this happened last night.
Janet was informed she had Polycystic Kidney Disease (PKD) in 2013, and was by now down below 14% kidney function and suffering all the side effects that having almost no kidney function brings. We both gave up paid work a couple of years back, so we could plan a low stress lifestyle and extend our operational time, getting out and about before dialysis intervened, and that was working. Janet was on the transplant list, but you never know when or if at all…
When you’re pregnant you pack an emergency bag, but with a longer term illness – well we didn’t. So it was bag up whatever we could think of and drive (making steady progress with reasonable consideration of other road users, m’lud) to Southmead hospital, where it was clear we didn’t know where to go and no-one else seemed to either. But ever helpful staff got us to the right room and Janet was settled into a room normally used for dialysis, so there was the big magic box sat next to the bed as if to say, I’m still here but perhaps we won’t get to know each other after all.
Of course, we’d not brought everything we needed / wanted, so a list was imagined. And forgotten almost immediately. But I’m not good with lists. Overnight, Janet had bloods taken, lots of bloods, and went through pre-op screening. She began a course of immunosuppressant drugs ready for an operation in the morning. In the meantime the donor kidney was extracted and checked out and transported from wherever it was to Southmead.
10:15 I’ve just gone into Southmead (nice day for a motorcycle ride, and free parking) with a bag of needful stuff, and she’s in theatre! It’s bloody happening! Next update will be after three this afternoon.
15:00 Janet has just this minute left the recovery ward following the operation. I’ll be with her shortly. Another fine afternoon for a bike ride.
Thank you for all your lovely comments on Facebook and here and in numerous phone calls, texts and WhatsApps. I’ll be passing them on to a probably quite sleepy Janet.
I’ve spent much of the day cleaning up after our mad dash last night, and plans are being considered. Plans which may have to be overhauled in the light of events.
Of course, I won’t be attending this weekend’s The Druid Network AGM, so sorry to miss you but…
19:00 Just left Janet sleeping off the anaesthetic. She’s still drowsy and obviously in pain from the surgery but it all seems to have gone very well. We managed a quick FaceTime with Charlie and a phone call but that wore her out! Assuming nothing goes awry she’ll soon be bored with the machine that goes ping (my favourite), and wanting family visits before long. I’ll be back with her when visiting resumes tomorrow at ten. Further updates tomorrow.
3rd March 2017
12:30 Just back from this morning’s visit. Janet’s much brighter, and although she’s still in pain she’s fully awake. She was told to use the painkiller driver more often, as she has a high pain threshold and was sitting it out. Her older brother Greg (who also has the disease but at not such an advanced stage) visited too and that was great. She’s not up to visitors generally though.
I’ve left while they take out the wound drain, which is a good thing as it means the healing process is continuing well. And that of course means I shall be back in Charlie’s room putting yet another undercoat of white emulsion over her previously deep purple bedroom (new parents, just say no!). I’ll be back later this afternoon, but weather permitting on the bike, as taking the car in and finding a car parking space was a blog post in it’s own right – I will spare you that though.
As ever, deeply appreciative of all your comments across social media, phone and text, as well as enough offers of food to keep me supplied for the next month! Now to check this (early) morning’s paint has dried and start again!
18:00 Bit rough this afternoon. Whether it was the increased painkiller (iv Fentanyl, 50 to 100 times more powerful than morphine, saw Prince off!) or something she didn’t eat, Janet’s been a bit sickie this afternoon. Still, on the whole she’s got a much better colour to her cheeks. Ok, so it’s green. (Joke)
Lovely to have Nicki pop by while she was working in the hospital, but Janet is still a bit tired for regular visitors. I guess we’ll have plenty of time for fun when we’re back home resting up. No idea how people manage to sleep though all these bleeping pinging popping things but she’s managing it as I type! Fan full on too, as it’s a lot warmer in here than she might prefer. Visitors to home will know I’m prone to faint if anyone asks for the heating to be turned up, or on… 😉
When I left her at eight o’clock she was sleeping and was feeling a bit better.
Have started planning ahead. Lots to do, mainly of a cancelling kind of thing. I gather we cannot go far from the hospital for some time, in part because of intensive monitoring and regular appointments and in part to reduce risk of infection while the immune system is impaired. That may affect already arranged and paid for holidays in Italy and France. Ho Hum. Priorities and benefit analysis? Nah, we take the hit and smile and smile and smile! I shall have to look at cancellation policies though, and soon.
Saturday 4th March 12:00 Just back home – another nice day for a bike ride – and took all your best wishes and the latest cards in to Janet. She had a slightly uncomfortable night, but the sickness from the painkillers appears to have abated. Getting very uncomfortable from constant bed rest, but too sore to move about very much to ease it. Hopefully as the soreness eases she’ll be able to move about more. Some loss of dermal sensation in the right thigh, but that’s not unusual and hopefully the nerve will spring back into life soon or adjacent nerves will reroute. Mostly sleeping, even with my scintillating company, so regular short visits from me and she’s probably not up to any others unless I contact you directly. Also, germ prevention is a thing while her immune system is down. Still, we will be “at home” to folks for quite some time once we get her home.
And now the sun’s out, so the washing’s going out. Then the chickens need new straw. Then… breakfast!!! Oh, and a bit more glasswork in Charlie’s room! Life doesn’t get much better.
19:30 Minor bit of excitement when the doctors became concerned about a dropping blood count and poor oxygen levels. Janet went off for a chest x-ray and then a CT scan. I went for a Costa coffee… She came back quickly enough, so I don’t think there is any emergency. On the plus side, PatientView results from yesterday show Janet’s GFR had already gone from 14% to 23% – and that was yesterday!!! I can’t wait to see today’s results when they get entered. 22:00 Ooh, today… 24%
Sunday 5th march 15:00 Ok, so last night was a bit more dramatic than my blog post might have indicated, but since all seems well again now I’ll lay it out here. I’m just back from this morning’s visit and my lovely motorbike is looking very bedraggled because it’s not entirely sunny today…
Janet’s blood count dropped to half normal last night, due to an internal bleed from a failed connection onto part of the donor kidney. One of the smaller blood supplies had come adrift, perhaps caused by the wretching sickness she had on Friday, and the blood leakage was incredibly painful as well as depleting her blood supply overall. She was very, very unwell. Another CT scan indicated the leak had halted and she was given a couple of pints of replacement blood.
Today she is very much brighter. The registrar and the consultant came around this morning to update us on her progress and although they can’t actually be sure the kidney is functioning at all yet because the blood results are so influenced by the blood transfusion there is every expectation that it is, and that her GFR may rise to around 50 (from 14).
The part of the donor kidney that is not receiving blood will hopefully scar up and the excess fluids lying above it should be absorbed by the body over the next few days. There is a very small risk of septicaemia and they’re closely monitoring for that. For this reason she’ll probably be in hospital longer than original predicted; at least another week.
Thanks again for all your cards, texts and comments, all of which I’m taking in and sharing with Janet on my regular visits. A few folk have expressed concern for me, but I’m also fine thanks and managing to keep all the home balls in the air. I do have to admit I am not currently keeping any of the Parish Council or Neighbourhood Plan balls flying, but I’m confident others are juggling them very well indeed.
16:30 I suppose it was only a matter of time before we were presented with this dreadful scenario, but I’ve just been offered a kidney for sale! Apart from the happy circumstance that we don’t need one and the obvious illegality and ethical horror there’s a searing knowledge that there are folk out there for whom this is a feasible option out of poverty. So so sad. It is also interesting to note that he has offered a kidney of the right blood type and I wonder if that’s simple chance or if he’s actually located a way in to medical records. However, Mr Man in Rajasthan, I won’t be in touch and don’t have $300000 in any case.
23:00 Just about to hit the sack at last. I was not going to go in this evening, to give myself a chance at preparing some food for the week ahead. But Janet WhatsApp’d me saying she wanted me in, so off I went. At least I got the bread baked first.
Fair do’s, she was in some discomfort, mainly brought on I think from being in bed for more than three days. Not right to waste valuable NHS time on back rubs – that’s what husbands are for. I think that’s all it is, although she’s still quite swollen from the internal leak. After a while we got her out of bed and on her feet, and then into a chair. Changing position seemed to help, and by noise o’clock she was back in bed again and comfortable.
She’s actually read the blog! I didn’t know if she had and I wasn’t sure how she’s react, but she read it all this evening and I’m still here… 😉 She was very touched by all your kind comments.
Got back late and had a chat to her younger brother in America, then found out her older brother and his wife have been busy making dinners and freezing them for me! How fantastic is that?! Thank you, I really appreciate that. But right now I think I need to Zzzzzzzzzzzzz
Monday 6th March 15:00 Janet’s still in a significant amount of pain and is tender and swollen around her stomach region. There seems to be no diminution in the internal fluids and this is of some concern to the doctors. When I left her this morning she was waiting for an update from the doctors. I’m aware that since I left her she’s had another scan or x-ray and the results of that should guide the treatment of the fluid buildup. I’ll be back later.
20:30 Just back. Much better this evening. The x-ray showed a chest infection and this is now being treated. The doctors also confirmed by scan that the kidney is now working well. When I turned up she was sat next to her bed eating a light dinner, which is a first I think since last Wednesday. There was then a tentative exploration of the ablutions, but to no avail! Still sore of course, but far happier in herself. Tomorrow I have to go back to meet the pharmacist to be told my role as timekeeper of a crucial drug regime. My experience of drugs is of course limited, so I shall listen hard. It also appears that the extended exile in the UK stretches to some three years! While appointments at clinics slow from daily to (eventually) monthly, there’s no leaving Britain for a long time. So those holidays in France and Italy will probably need Visas by the time we can go…
Tuesday 7th March 14:00 So, back in this morning and a long detailed chat with the pharmacist about all the new drugs Janet will be taking (not so many really) and the regimen under which she’ll be taking them (really quite detailed and inflexible). Things do seem to be pulling toward a planned exit and return home, which is great – there may not be too many more of these blog updates, but I will start a new one once we’re both home. Catheter out without problem (TMI?). Janet seems still to be holding on to a lot of fluid, and most of it is responding well to gravity. I’m sure we’ll soon get rid of that and return her to her normal skinny self once we can get back to our normal walking habits (although, heh, a bit of meat on the bones… hmm) 😉 Anyway, as I’m sure you know Janet is really touched by all your interest, your best wishes and your prayers and healing. As am I; you guys rock.
Wednesday 8th March 08h15 Just had a call from Janet to tell me she should be released later today and I can come collect her. Time yet to be arranged, but YAY!
21:00 So, after a long wait and a negotiated peace between me and the car parking police we got Janet home earlier this afternoon. The walk from the ward to the camper van nearly wiped her out, and the load of pills and potions nearly put the camper on her wheel arches! Janet’s settling into her home again and before long we’ll be arranging visitors (lovely, healthy, clean visitors without any nasty lurgies).
It is almost exactly a week. This time last week we were sat in the ward at Southmead, and they were telling us the kidney was on it’s way. Still don’t know where from! Fantastic work by our much loved and constantly under threat NHS and the wonderful staff that work within it. Long may it and they continue!
That’s it for this page now. Thanks for all your kind words, calls and messages. Do keep reading my nonsense though, just to make me feel like I’m not always talking to myself. 🙂
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