Part 1, 24.5.18
I'm off on a big journey in a coupla weeks (see here) but this week I made the decision to embark on an even more significant journey.
My friend Jamie is suffering with chronic kidney disease. This has reached the stage where, for months now, he's been taking a trip three times a week to be hooked up to a dialysis machine at Morriston Hospital, near his home in South Wales. The process each time takes three hours but that doesn't include the waiting time before Jamie is connected to the machine, nor his travelling time each day. In short, on each of the three visits, Jamie's day is pretty much done. Thank God though for the efforts of the team at the hospital, without which I can't imagine Jamie's plight.
I first met Jamie over two years ago. He contacted me via Twitter for some help with outdoor kit. At the time he was beginning Mountain Leader training. Jamie came over to our home in the Peak District a couple of times. On his second visit we enjoyed a short backpack together, which you can read about here. Both Chrissie and I hit it off with Jamie as soon as we met him. I was struck by his openness, sincerity and kindness. Jamie does a lot of work helping charities, especially Chron's and Colitis UK. Be assured, Jamie is one of the good guys.
Here's a couple pics of Jamie enjoying the outdoors with me back in 2016. Our aim is to be out there again together, soon.
Since that trip in 2016 I haven't seen Jamie, but we've kept in contact as I've sadly, watched his health fail from a distance. As soon as I realised Jamie was on dialysis I began to wonder if I could offer him one of my kidneys. I knew nowt about the process but, on Monday this week, I spent some time researching it on the internet. After an hour or so, I shared the thoughts with Chrissie. I'd not mentioned it to her before, so she was surprised but, as ever, being the epitome of kindness, supportive. I grasped the bull by the horns and contacted Jamie, by direct message on Twitter. I felt too emotional to phone him. And, within 24 hours, I was in contact with Suzanne, the Renal Live Donor coordinator at Morriston Hospital.
This morning I had a lovely chat with my friend Jamie. He was in the dialysis unit, waiting. We shared some thoughts and I checked with him that he was happy for me to blog about this journey and for me to refer to him by name. Both Jamie and I are of the same mind. Anything that can be done to raise awareness of the effects of chronic kidney disease and the concept of a live donor transplant is fine by both of us. Hence my writing. In my book, if we can help persuade just one more person to embark on such a journey it'll be a job well done.
I'm not gonna detail the stuff about live donor transplants cos it's all here on the NHS website. Read it at your leisure. All I'll say is, most of us have two kidneys...but we only need one of 'em. What I would like to do is take you on this journey with me. I'll try my best to give you a step-by-step walk through the process as it happens to me.
I hope for a good outcome. I'm looking forward to a series of tests to make sure:
a. I'm a compatible donor for Jamie and
b. I, and especially my kidneys, are in good enough health for a transplant to take place.
Two other key bits of info here:
1. You can donate a kidney without specifying a donor. It's known as being a non-directed altruistic kidney donor and
2. If I don't match Jamie but everything else is ok, Jamie and I can be paired with another donor and recipient who have the same problem and effectively, swap donors. In that case, the end result is the same. Jamie gets his transplant AND a bonus - someone else does too!
So, the start of my journey.
Having contacted Suzanne by email and phone on Wednesday, she sent me a health questionnaire which I've completed and returned. She also, with my permission, contacted my GP who will also be sent a questionnaire. Today, I received a package in the post to get a blood sample locally. I have an appointment with a nurse tomorrow at my GP surgery for this and the results will be sent to Suzanne.
Jamie and I only know that the process of testing will take "months". And of course I'm in France for 5 weeks, when little can happen. But join me, if you will, by following my blog for further updates. Warning, you may have to put up with my lesser journey across France along the way. I hope it might make you smile.
Best wishes to my friend Jamie.
Part 2, 25.5.18
Small steps.
This morning I had a blood sample taken by one of the nurses at my GP's surgery. The nurse wasn't familiar with the process re transplants but decided to use a practice form as well as the one sent by Suzanne. My little drop of blood will be sent to a local lab to ascertain my blood group and I'm to check in a week with the surgery. I'll get a printed report which I can send to Suzanne.
Hancock fans will be relieved to hear I didn't have to give an armful.
I cycled back home, over a steep hill, into a headwind and reminded myself that it wasn't as tough as enduring dialysis three times a week. Jamie is, in fact, an inspiration to me; retaining his sense of humour and stoicism through his illness. Amongst other things I'm hoping this thought might help me through any difficulties on my ride across France.
At home, the information pack from Suzanne had arrived. I began reading some of the stuff over lunch. In a list of questions was one not included in the questionnaire I'd completed the other day. Had I ever had Lyme Disease? Well, yes, in 2014 when I'd had a bulls-eye rash around one knee. This being a classic sign of the condition, my GP prescribed antibiotics, which meant no alcohol right through the Christmas of that year. Oh dear! But that's not as bad as dialysis three times a week, eh?
I phoned Suzanne. She was unsure, but doubtful this was a contraindication. She'd need to check with the consultant nephrologist (kidney specialist). We had pleasant chat though and it seems, once the blood test is done, I'll have a phone consultation with her re the whole process. Shortly after this I'll be passed over to the Living Donor Transplant Co-ordinator local to me who'll oversee the rest of the testing process. It was also mentioned that, if all goes well, Jamie and I will be interviewed by an independent assessor appointed by the Human Transplant Authority who will check all is in order legally. This will take place either local to me or in South Wales but we both need to attend, so one of us will need to travel. But that's a long way away right now. And when I returned from walking the dogs just now I found an email from Suzanne reassuring me that the Lyme Disease wasn't a problem. Phew! Talk about ups and downs.
Following yesterday's post (click older posts below this to find it) I've received lots of compliments. I've been very touched by these but I'm really not fishing for praise in writing. Rather, I'm hoping to raise awareness of the effects of chronic kidney disease and, in particular, the concept and process of becoming a living kidney donor. I'm grateful for the lovely comments though. Thanks to you all.
Watch here for the next update. You can get that in a number of ways. If you follow me on Twitter you'll see a Tweet linking to each blog post. You can, if you wish, follow by email, typing your email address in the box on the left side of my blog; in which case you'll get an email alert for each new post. If you're a Blogger user you can follow my blog by using the button below the pictures relating to my existing followers, again on the left side of my blog.
Have a couple of gratuitous pup pics to make you smile...
...then spare a thought in your busy day for my friend Jamie and others like him.
Part 3, 30.5.18
The first hurdle.
This afternoon I got the result of testing for my blood group. It's O, which is excellent news since that group is compatible with all other blood groups. So, no matter what Jamie's group, we'll be ok.
I phoned Suzanne to let her know but she's on holiday until Monday. I left a message though and I've no doubt she'll get back to me. In the meantime, I'll pick up a printed report from my GP surgery tomorrow and will email it to her.
Needless to say, I've already let Jamie know that little piece of good news.
Part 4, 5.6.18
Today I had an hour long interview with Suzanne, my living transplant donor coordinator, over the phone. She took great care in checking information she had on me and talking me through the rest of the process, or workup as it's called, towards, hopefully, a transplant.
The information was comprehensive and echoed much of what I'd learnt already but with plenty of time for me to ask questions. I found the process helpful and reassuring.
Suzanne's posting me some information and bottles to get samples for blood cross matching. When I get these I need to contact my local hospital to have the samples taken. It's hoped this can be done before I go to France on the 15th so I can post them to Suzanne. There then follows tests which can take up to three weeks, and an assessment will be made as to whether Jamie and I are a close enough match. All this will go on while I'm cycling through France. It's really good to know those five weeks won't be "wasted" time in this process and all credit to Suzanne for getting things moving along in anticipation of my trip.
Part 5, 11.6.18
On Friday I received the parcel from Suzanne containing some fancy sample bottles for checking and cross matching my blood with Jamie's. I spent a vaguely amusing half hour being passed round in circles on the phone to Stepping Hill Hospital in Stockport, to be told eventually that they couldn't take these samples. Strange. It's a large hospital.
Before phoning Suzanne I tried another hospital in Tameside and found they could do it. They've a walk in clinic.
So today I pootled over there and waited quietly in a short queue. I was a bit worried cos there were warnings on the attached form to say the blood had to be taken by a suitably trained person. When I got in there the nurse said they didn't use bottles like these but, in any event, she pulled two syringes full of blood from my arm and inserted said blood into the two bottles using a needle.
I didn't even cry.
Then off to a Post Office to pack them off to the lab in South Wales where they'll work some magic. They're on next day delivery so, tomorrow, my fine Yorkshire blood will be in Wales.The checks are for HLA typing, anaemia, hepatitis B and C, CMV, EMV and syphilis (don't ask me what the initials stand for). Evidently there doesn't need to be an exact match. Recent contact with a donor, who gave to his son, showed he only had a 50% match. Suzanne tells me stuff can be added to Jamie's blood to assist compatibility and they've even done transplant with no match at all. All that sounds quite positive to me, just as long as they don't find any type of infection I guess.
All that work takes at least two weeks, then Suzanne has to meet with their scientific team to get their judgement. She expects to have an answer by early July. So by the time I'm back from France I'll be in touch to get the outcome.
Fingers, as ever, are crossed.
There'll be a gap now in these updates until I'm back in the UK, after 20th July. Follow my adventure in France on here or Twitter if you wish. As an aside, I'm raising money for Cancer Research UK. My Justgiving page is here.
Thanks for visiting the blog.
I wish for luck for my friend Jamie.
Part 6, 25.7.18
A few days back from my adventure in France, I today made contact with Suzanne, my donor coordinator. You'll remember the important blood samples I had taken back in June. While I've been bimbling across France tests have been done to establish whether or not my blood is compatible with Jamie's by cross matching. In these tests our blood samples are mixed to see if there are any problems with antibodies. Following the tests, the team's scientists met to assess the results.
Well, having spoken with Suzanne this morning, it seems the end result is that my blood is a good match with Jamie's, which means I have the go ahead to carry on with the process. Such good news!
Tomorrow Suzanne will contact her counterpart in Manchester to hand me over, so the rest of the tests can be done locally.
I was pleased to be able to phone Jamie to let him know this very positive news.
I now look forward to making contact with my local donor coordinator in the next few days.
As ever, my thoughts are primarily with my friend Jamie as he continues with the ordeal that is dialysis. Pebbles and Islay send him love.
Part 7, 15.8.18
My thoughts are a turmoil. In part it's to do with our labrador, Islay, being so poorly after an operation to rid her of a fungal infection in her sinuses. She's had the front of her skull shaved to allow two needles to be inserted for the application of cream to kill the infection. Home now, her nose is running with a nasty mixture of snot, cream and blood, as expected, and her skull and muzzle is swollen. She looks a sight. But it's all as predicted by the vet. Worse, she is likely to need a repeat of the operation in two weeks. I feel for her. This is nothing at all to do with the donation process, but everything to do with my mood as I cycled into Manchester this morning to meet my new Transplant Coordinator.
I met Guy, at the renal transplant base in Manchester Royal Infirmary (MRI). I decided to cycle in to avoid any issues with traffic and parking. Plus it's good quality exercise and the 17 miles took less than an hour and a half. Guy was very pleasant and guided me through the work up to come. Today I had my height, weight and BMI checked. I also had some further blood samples taken along with blood pressure and I had a chest x ray.
Guy explained to me that the work up takes so long because access to the scanners used in a couple of the tests is prioritised towards folk with life threatening conditions. Since I'm healthy that puts me down the list. No account seems to be taken of the recipient's condition. But that's the way it works. As Guy explained, their team could do all the tests they needed in a matter of weeks but it's slowed by the access to scanners.
In light of this it's no wonder that Guy predicts a 6 to 9 month process ahead. Chrissie and I have an Arctic trip planned for late summer 2019 and it's beginning to look as if this could be compromised given the length of time needed to get back to hill fitness after my operation. Guy's suggestion is to schedule the transplant until after that trip, which would be September 2019. As he says, there is no point in trying to rush recovery, better to delay the process by a few months.
This is all hard to stomach but it's important to realise that the transplant could easily be delayed right at the last minute because either Jamie or I have a cold. Not to mention any other hiccups which tests mightt throw up. Nothing is certain.
I talked all this over with Chrissie after I got home and then phoned Jamie and explained all the above to him. That was hard. But Jamie sounded stoic and positive. He's clearly doing his very best to handle all this. I admire him for that. Although it's been made clear that the donation process is centred around me I cannot help but be honest with Jamie about what's happening along the way. For me, Jamie is at the centre of this and deserves no less.
So now I await the appointment for my next test, which I think is an ultrasound scan. Not sure, because I was a little overwhelmed with all the information today. No criticism intended.
Sorry to seem a little demoralised today. As I said to Jamie, I was perhaps naive in thinking all this would be done by the end of this year. However, I remain resolved to help him and will try to stay patient through the process to come.
I wish my friend Jamie well.
Part 8, 26.8.18
This journey really is a roller coaster.
We came back from a weekend away to find two letters re two different appointments on the same day, Sept 11th. One is for a glomerular filtration rate (GFR) test and the other for a kidney scan. These are two big ones. The GFR process takes 6 hours. I'll be injected with some radioactive stuff and 4 blood samples will be taken over the 6 hour period. This shows how quickly the kidneys remove the stuff from my blood. The scan involves another injection and a scan is taken 2 hours later to show up my kidneys. Both these test are done in the Nuclear Medicine Centre at MRI.
Rereading the donation info revealed that this leaves only two further tests; an ECG and an ultrasound scan.
The letter re GFR tells me not to take any excessive exercise (nor caffeine, nor alcohol) on the evening before. I wondered if cycling to the hospital would be ok. I phoned Guy, my Transplant Coordinator to ask. He didn't know but said he'd check and get back to me.
A couple of days later Guy phoned and told me cycling in would be ok, but I must be there an hour before that test to allow my body to settle down. That means getting in for 8am, which is no problem. An early morning ride sounds good. Traffic may be quieter.
I took this opportunity to ask Guy if I was right about just the ECG and ultrasound left after these two big tests and he said, essentially, yes. He also told me that my ultrasound was booked and I'd be getting a letter shortly and I'd probably see the nephrologist (kidney specialist) doctor on either 19th or 26th of September, his surgeries being on Wednesdays only. At this appointment I should have the ECG. This doctor will assess my tests and decide if any extra ones need doing. It seems there may be another due to my age. Guy also said he didn't anticipate any problem with my GFR since the blood sample he took showed a GFR of 90, which apparently is the highest rate a blood test can show. Finally, he said I'd have a final scan before seeing the transplant surgeons. According to Jamie's transplant nurse, once I see the surgeons we'll know the end's not far off.
So, from feeling everything was going to take ages, it now appears that many things are going on within the next month or so.
In other news Jamie has been added to a waiting list for a deceased donation and simultaneously suspended from it, since he has a potential living donor. He will though start accruing points so if something goes wrong with my offer he will then be a high priority.
My fingers, and Jamie's, remain firmly crossed.
Pebbles and Islay send Jamie their love and big, sloppy kisses.
A reminder that if you're reading this blog for the first time you can find previous blog posts about kidney donation by making your way back through my blog clicking on "Older posts" at the bottom of the page.
Comments are always welcome.
Comments are always welcome.
Part 9, 26.9.18
Over the past few weeks I've become quite adept at finding my way around Manchester Royal Infirmary (MRI).
On 11th September I spent most of the day in the Nuclear Medicine dept. I had two radioactive injections. The first was to show up on a CT scan as it found a route through my kidneys. The second showed the rate at which my kidneys filter by dint of four blood samples taken at hourly intervals.
On 18th I had an echocardiogram of my kidneys. This was an extra test for donors over 60.
On 21st I had an ultrasound scan of my kidneys.
And today, the 26th September I attended Dr P's assessment clinic. I had a repeated chest X ray to clarify a shadow on the first which it's thought was just one of my nipples. I had an ECG to check my heart's ok, plus fasting blood and urine tests and blood pressure. I spent half an hour with Dr P, one of the MRI's consultant nephrologists (kidney specialist). Dr P went through the whole of the process from here to make sure I was aware of the small risks involved. A very thorough, informative chat.
At the end, Dr P seemed happy with everything except for my blood pressure which, though within the accepted normal range, is higher than he'd like for the operation. It's thought it may be nothing more than the stress of attending hospital and, thanks to very rapid liaison, tomorrow I'm visiting my GP and being fitted with a monitor to read my blood pressure over 24 hours.
Dr P tells me my blood pressure is not a show stopper but it may have to be dealt with; I'm guessing with drugs.
I'm waiting for an appointment for a further CT scan which is performed after the assessment clinic, the intention of which is to map where my kidneys and associated blood vessels are to better inform the transplant team.
Once Dr P is satisfied with the blood pressure and has double checked all results, he'll write to refer me to the transplant surgeons. I'll get a copy of the letter.
I asked for a likely time when the operation might be able to take place and was assured that January is a realistic expectation. It may be even earlier.
I'm also to have a meeting with an independent assessor who ensures the transplant is in accordance with the Human Transplant Act. Critically any form of payment, in cash or kind, is illegal in the UK. Jamie will also be interviewed on the same day and in the same place and this will most likely be Cardiff. As an aside here, legitimate expenses can be reclaimed by live donors via a government agency and this should cover things like travel costs, parking and accommodation.
So, although I don't quite have the final go ahead for the transplant, it seems very positive now, especially since the team this morning were happy to discuss, broadly, a likely date.
I had a long phone chat with my pal Jamie and we're both feeling positive that good progress is being made. I admire Jamie's positivity through all this. He's approaching his 100th dialysis session soon.
So, tomorrow, the hot topic is my blood pressure. I WILL remain calm, watch TV and read.
Wish us well.
Part 10, 15.11.18
The story rumbles on...a bit like Brexit.
It's been over 6 weeks since my last visit to Manchester Royal Infirmary. The day after that last trip I had a 24 hour blood pressure monitor fitted at my GP surgery and the results were fine. It seems, like many others, I suffer from "white coat syndrome" meaning I react, without even realising it, to my blood pressure being taken by a health professional. Oh well.
The six week wait was the normal queue for a CT scanner. They're clearly in constant demand. So today I had a CT scan of my abdomen along with an X ray of the same. During the scan I was injected with a fluid dye, via a canula, to show up the blood vessels which serve my kidneys. This will enable the transplant surgeons to make a final decision as to which kidney to use.
After these two procedures I went in search of my transplant co-ordinator, Janet. I managed to find her for a five minute chat where she was able to tell me the nephrologist, Dr.P., has now referred me to the transplant surgeons. We're now in the final stages of this long journey. Next up will be a meeting with the surgeons for a final run through with me before fixing a date for the operation. Janet still thinks we're on track for this to happen in January.
Once the date is fixed, Jamie and I will both meet the independent assessor to make the necessary legal checks ensuring no payment is being made for the donation. There's no hold up here though, because this meeting will only be set up once we have a date for the operation.
I was pleased to be able to phone my friend Jamie this afternoon with these positive updates.
The waiting continues but I feel we're getting close to a conclusion now. It can't come too soon. Jamie has had a number of dialysis sessions where he's suffered from a serious drop in his blood pressure. Not good.
On a more positive note, it was great to meet up with Jamie a couple of weeks ago when he came up to Manchester for the day. We had a most enjoyable visit to the Imperial war Museum North. Not the best quality photo, but it's the spirit of it that matters.
Thanks for reading. Please keep you fingers crossed for us. I hope you enjoy this pic of me, prepped for my scan today. Smile!
Part 11, 28.11.18
Today's a milestone.
Had a phone call this morning from Suzanne from the transplant team down in Swansea. She's been busy looking at dates and has proposed 19th February for the operation. This thing is gonna happen! With this in mind she's hoping to arrange for Jamie and I to meet the independent assessor in the week beginning 21st January. The assessor has to have their decision in, that all is ok legally, at least 10 days before the operation. She's also hoping to take bloods (I believe for a final cross check with Jamie's) on that day, when I'll be travelling down to South Wales. The bloods have to be taken within 6 weeks of the operation.
This afternoon I had an email from Janet in Manchester confirming the above and she has already said they can fit in with 19th February. My operation will be performed in the morning in Manchester, Jamie's that same afternoon in Cardiff, my kidney having shot down the motorway on blues and twos.
So all is looking good but subject to final confirmation. I meet with the transplant surgeon in Manchester on 12th December.
I feel today's the right time to share some thoughts with you all.
I made the offer of a kidney to my friend Jamie having discovered he was on dialysis three times a week. With Jamie's agreement I decided to blog about the process. It would be easy to think I was doing this to draw attention to myself, inviting accolades for my action. This isn't the case though. My desire, really, is to raise awareness of the plight of those suffering from chronic kidney disease and the effect this has on their lives. Jamie has been deprived of the ability to enjoy outdoor pursuits like cycling and hillwalking. He's unable to drive long distances and can't venture far from his dialysis centre in Swansea. It's also true that the dialysis is merely keeping him alive, not healthy. He needs a new kidney. Without someone like me offering a kidney he'd have to wait, in a long queue, for someone to die.
Each time I post on here and Twitter I receive lots of positive comments and praise. I've been called a hero. I'm not. I'm just an ordinary guy trying to help. It's not unusual for me. Close friends will, I hope, recognise my willingness to help folk, usually in a very small way. I hope this kindness has a ripple effect, prompting others to do likewise.
I spent 27 years of my life as a mountain rescue volunteer. I loved the idea of helping folk I didn't know, giving assistance without reward. But here's the thing. There is a reward, but it's hard to explain, because it's a feeling, a sensation you get, having done some good.
It won't surprise you to hear that Jamie's thanked me more than once for my actions. It's completely understandable. I'd do the same. I can only try to reassure him that I'm happy to help and he doesn't have to express his thanks. I'll get my reward when I can share the outdoors with Jamie again. When we can sweat and toil up a hill together, or maybe flog up a climb on bikes. That shared experience will be a joy.
I feel like I'm rambling. My thoughts are a little clumsy. I hope you get the drift of my feelings.
So, to end for today, I ask just this. Can you help someone as you pass along the way? Can you too be a good Samaritan? It may not be giving someone a kidney but the smallest acts of kindness can bring light to the life of the receiver.
Be kind to others. There cannot be too much love in the world.
Part 12, 13.1.19
Back in May last year, when I decided to offer Jamie one of my kidneys, I knew it would be a long process but I did hope it would be completed by the end of the year. It has, however, taken a little longer than I anticipated, but we're almost there.
Last Tuesday I cycled into Manchester for the final time on this journey. I had my routine pre-operative assessment; bloods, urine, weight, height, blood pressure, ECG and a long questionnaire. All seemed to go well.
I also had the first in a series of MRI scans to begin my part in research I've agreed to, looking at the performance of the remaining kidney following transplant.
Typically, on the last ride there, I had a puncture, thankfully only minutes away from the hospital.
I've just finished packing the car for the journey down to Swansea tomorrow. This really is the last step before I go in for the op. I have an Airbnb booked for tomorrow night, not wishing to make the 200 mile drive twice in a day. I'm looking forward to having dinner with Jamie and his parents in the evening.
On Tuesday, I'm off to Morriston Hospital in Swansea. Jamie tells me it's not the best place to park so my road bike's in the car and I have a bit of a circuit planned for the morning, taking in the hospital. The folk at the Airbnb are happy for me to leave my car there. First I'll meet Suzanne, who was my first contact in this journey back in May. She will take blood samples for a final cross match with Jamie before the operation. After this I'll be meeting Jamie again and we'll have an appointment, together I think, with an independent assessor to check that the donation complies with the Human Tissue Act, crucially that no payment is involved. I believe we both have to sign a declaration.
And, hopefully, that's that. Next stop will be my admission to Manchester late on the 18th February in preparation for the operation the following morning. I'm expecting to be there for 3 or 4 days ish. It all depends on how I am. Jamie's operation will be that same afternoon after my kidney has been hurried down the motorway system to Cardiff, where, I'm sure, he'll be waiting excitedly.
Thanks for reading and following this journey. Find previous posts by clicking "older posts" at the bottom of this page or working your way through the menu on the left side of the page.
Thanks for all the kind messages to both of us along the way. Next time you hear from me on this subject the op will be done. Let's hope for the most positive of outcomes so Jamie can re-engage with his love of the outdoors and an active, enjoyable life.
Here's a daft pic from my Channel to Med ride last summer as an added incentive to my friend Jamie.
Live live to the full and...smile!
Part 12A, 18.2.19
Yeah, I am a bit superstitious, I never miss bidding good morning to solitary magpies, hence titling this "part 12A".
We're pretty much there. For me it's the end of a 9 month journey, but for Jamie it's been considerably longer...well over a year.
I had a great weekend of walking and camping on Kinder with my pal Dale, which successfully distracted me from the job in hand. Thanks Dale.
We'll take the dogs for their daily walk this morning then, this afternoon, Chrissie and I will await a phone call, twixt 3.30 and 4:30, to tell me to go down to Manchester Royal Infirmary. I trust that's a formality cos Jamie's already ensconsed in Cardiff University hospital...preparing and waiting.
Chrissie will drive me down and tomorrow my operation is scheduled for 8:30 in the morning. I fully expect to be out of it for much of the day.
I'm nervous. Who wouldn't be? I have confidence, though, in the expertise of the renal transplant team in Manchester; the most experienced in the UK.
The operation involves three to four small cuts to allow access for tools and a camera, one being larger for hand access and removal of the kidney. Technically it's a laparoscopic hand assisted live donor nephrectomy.
The operation involves three to four small cuts to allow access for tools and a camera, one being larger for hand access and removal of the kidney. Technically it's a laparoscopic hand assisted live donor nephrectomy.
Following the op my kidney will be transported down the motorway system to Cardiff. Jamie's op is scheduled for late afternoon.
Poor Jamie's been on dialysis pretty much every day for the past week and he'll be on it for all of his hospital recovery, two to three weeks. And, of course, Jamie's operation is significantly more complex. He'll receive "my" kidney but his existing two will remain in place.
Best guess, I'm hoping to be home by the weekend, but that depends on my post op recovery. There will then follow several weeks of careful rehabilitation to ensure my wounds heal well.
Many thanks to all who've been kind enough to give me moral support on this journey. Whilst I'm not seeking bouquets, I do really appreciate it. Special thanks to Chrissie; I couldn't have got this far without her support.
Next time I update on here it'll be post op.
I wish my friend Jamie well.
Wish us both luck. Hold us in your thoughts.
Gratuitous happy pup pics to make you...
...smile.
Part 14, 27.2.19
Part 14, 27.2.19
It's now operation day plus 8.
My admission into hospital last Monday was not without problems. I never got the call to go in, as promised, and instead ended up researching the correct ward on the internet and phoning them direct, twice, before they agreed I could go in. On arrival Chrissie and I were left, out of sight, in a day room for 45 mins before I was taken to my bed. Having now spent four days there I can begin to appreciate the understaffing on wards and why I wasn't attended to straight away.
The operation, early on Tuesday,was successful, though I wasn't quite prepared for how rough I would feel once I came round. There is proper focus on the statistical risks of the operation but it would probably come over quite negatively if you were told just how shit you'd feel. However, that lasted only for a day or so before I began to feel a bit better. To be fair it was mostly discomfort, rather than pain.
I'd awoken with a drip into my left hand for self-administered morphine, a catheter to allow draining of urine, a drain from one of the wounds in my tummy and a mask providing oxygen. Phew!
All of these were removed on Wednesday and I was able to get up and go to the loo. Laxatives helped restore my bowel movements and I began wandering up and down the corridor on Thursday, glad of the feeling of exercise. My appetite was poor though. I managed only a small amount of food at each meal.
Each day prior to Friday I was visited by my transplant surgeon, a different surgeon stopped by on Friday. Every day I saw a member of the transplant coordination team, who are all specialist nurses, and Dr.Anna, my researcher for the follow up I'd agreed to. All of this made me feel very well supported. I referred earlier to understaffing. None of this being a criticism of any individual. My experience was that all NHS staff work hard in strained circumstances. There's lots of waiting though for stuff to be done and it was nice that the transplant coordination nurses and Dr.Anna often stepped in to perform tasks in lieu of ward staff, for which I was very grateful.
On Friday morning I was told I'd probably be able to go home but there then followed a long day of waiting for a blood test result, analysis by the ward doctor and waiting for medications to take home. As a result, I eventually left with Chrissie at around 7:45pm.
Every day since coming home I've managed a short walk through our village. Slowly at first. Yesterday I walked around a mile and a half. This is allowed, walking being self-limiting. I'm not allowed to carry a rucsac, nor to cycle until I've seen my surgeon in about 3 weeks from now.
Yesterday Dr.Anna picked me up and drove me back to MRI for another mri scan, blood and urine tests, this being part of the post op research. Anna is very kind and gave me lots of encouragement.
Yesterday Dr.Anna picked me up and drove me back to MRI for another mri scan, blood and urine tests, this being part of the post op research. Anna is very kind and gave me lots of encouragement.
Today, all my pain has pretty much gone. I took only two paracetomol yesterday morning. My appetite's still not good. Something's affecting my taste buds. Coffee, which I love, tastes crap as did the one beer I tried on Saturday night. Bleurgh! I'm not enjoying my home made bread either.
My main sensation is weariness. I'm in bed by 9pm but managed 10pm last night, after episode 3 of Shetland, which I'd been looking forward to.
Forgive my grumblings. I'm just trying to give an honest picture, particularly for readers who might be taking a similar journey. In short, I've survived and am improving every day. Being discharged three days after the op gives a better technical answer as to how well I am. This unseasonal weather is helping too, making my wanders through the village a delight.
But, more important than all the above, is my friend Jamie. I can't speak in detail of how he is, though we're in regular contact, but his operation was a success. He was expected to be in hospital for two to three weeks following the op but he went home yesterday, after just seven days! My/his kidney appears to be working well but he has to return to a clinic on Friday and again each week to check how things are going and, critically, for any signs of rejection. But, Jamie is off dialysis...for the first time in around 12 months. I'm very pleased.
Since coming home I've cried often, usually as a result of seeing Jamie's progress. My emotions are heightened right now, but I do feel positive for both myself and Jamie.
Since coming home I've cried often, usually as a result of seeing Jamie's progress. My emotions are heightened right now, but I do feel positive for both myself and Jamie.
As always, I wish Jamie well.
And God bless Chrissie who is pandering to my every need at the moment.
And God bless Chrissie who is pandering to my every need at the moment.
I'll finish with some positive images of the last few days, when I've been out and about and visited by our precious Noah. The Sunshine Squad (aka Pebbles and Islay) are never far from my side, oozing healing love from every pore.
As I write it's operation day plus 6 weeks and 5 days.
I'm pretty much recovered. The sensitivity around the wound area has gone completely now. I pulled some tiny, straggly remains of stitches out, from one of the smaller scars, with tweezers a couple of days ago. They're supposed to dissolve. I still get the slightest of aches around the large scar but it's barely noticeable. I no longer seem to be experiencing the tiredness, though I'm told this can linger. I've been driving for a couple of weeks too.
I'll not pretend I haven't had some ups and downs since I last wrote. Aches, sensitivity, tiredness and generally feeling frustrated have all figured, but the fact remains, everything has gone according to plan.
We're just home from 10 days in the Dales in our motorhome. During that time I've carried my normal daysac on walks. I'm still not rushing things, even though I was told that I could do pretty much whatever I wanted after 6 weeks. Hence, the walks were no more than about 4 to 5 miles, but did involve a bit of uphill. I also enjoyed a few short rides on my road bike, the longest around 10 miles but including some short, sharp climbs. I could feel my lack of fitness so that's my priority now, to get back to bike and hill fitness. I've a cycle tour planned with my pal Dale in 8 weeks time so that'll focus me on getting out as much as possible on a bike. We also have a very short, overnight backpack coming up in 3 weeks, when I need to carry all my kit for wild camping. I reckon I should be fine for that. Plus, of course, there's the small matter of our 5 week backpacking trip on the Kungsleden, Sweden, in August.
Since I last wrote Jamie's clinic visits have reduced from twice weekly to once weekly, which is really great. As far I can see he seems to be progressing well, given he has much greater issues to deal with than I. We had a lovely chat on the phone a couple of weeks back, once we'd both got to a point where neither of us was dissolving into tears. We've both been feeling quite emotional. I'm really looking forward to getting together with him in the future.
The end of this journey will come, for me, when I'm back to my normal fitness. I will though, have an annual check to make sure I'm ok. For Jamie though, it will carry on for the rest of his life as he is continually monitored to make sure his new kidney is performing as it should be and he's in good health. But he will, I hope, regain an otherwise normal life. I think he expects this to be later this year, probably late summer. Join me in wishing him the very best of luck.
Meanwhile, I'll leave you with a couple of images from our Dales trip.
I don't know how I missed the transplant story before but I came across it today and just finished reading every post.
ReplyDeleteHow wonderful that it all worked out. I hope to see you and Jamie on a walk together in a future post.
I have only met one other person who did this, and that was also a donation to a friend. They called themselves "kidney brothers". That operation was a total success.
Thanks for sharing your story and your kidney.
"Kidney brothers", I like that. Thanks for visiting and your kind comments Jan.
Delete... and, prompted by your comment, we've both now updated our Twitter profiles to say, "kidney brother" 😊
DeleteNice Blog.
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