Quick, quick, slow…

Another day in the life of a living donor:

08:30 logged on to work laptop to check through some emails.  Luckily my employer has been very understanding about the tests that both I and C are having done and has allowed me to be very flexible in my work patterns.

09:15 Drop the cat at the vets for a tooth extraction – we all have appointments today. See you later Murphy!

11:00 Arrive at Epsom hospital for C’s appointment with his renal specialist who is pleased that his latest blood results show his kidney function is holding at an eGFR of 15 for now.  He also confirms that C will be referred to the surgeons for assessment too as part of the transplant process. Back home for a bit more work

13:00 Lunch at a lovely little pub half way between where we live and St Heliers.  It’s become a tradition that we stop by for some food on our way too or from the hospital. I often imagine the celebratory lunch we will have here one day when we get good news.

14:00 On our way to the hospital. I get a call to say they need to move my CT Scan appointment for tomorrow to this evening – great news, we can get it all done in one day.

14:40 I arrive at the renal clinic and check in.  I go to have my blood pressure checked and mange to introduce myself to the nurse as “Doctor Sadie”…. She looks confused and I don’t really blame her. I manage to clear things up and take a seat.  The waiting room is full and it’s clear that kidney disease in all its forms does not discriminate.  There is diversity here in so many ways but I know I’m probably the only donor here.  The rest are people that at some point will need dialysis and/or transplant.  So many lives could benefit if more people were on the NHS donor register and took the time to discuss it with their families.

15:20 In with the doctor who takes the time to go over my results so far; explain once again the donation process; its risks, benefits and considerations. He takes a medical history and completes a quick physical examination which picks up a soft heart murmur.  It’s something he thinks is not going to be an issue, but worth checking out so I’m booked in for a echo-cardiogram to make sure.  This will be the final test before my referral.

16:00 Over to the CT unit for my scan.  They are having problems with one of the scanners so its a bit hectic.  I gown up and one of the radiographers puts the biggest cannual I have ever seen into my arm.  We know it’s gone in OK as it happily sprays blood out whilst she tries to get the cap on.  The cannual will be used for the contrast die that is injected as part of the CT scan to show up my kidney structure in glorious detail.

16:30 I initially wait a while for the scan as they are busy and then suddenly I’m in, on the scanner bed and being briefed about the procedure.  I’m told I will feel warm when the die goes in; that I will get a metallic taste in my mouth and “It will feel like I’ve wet myself” Excuse me? Yes, it will feel like you are having a wee, but you’re not. Don’t Panic. Right….

The scan starts and whilst not scary, it is a little unsettling in its unusualness.  The scanner bed moves back and forth inside a spinning ring; a laser guide is used to line it up on the right part of your body and a robotic voice instructions you to “breath normally/breath in deep/hold your breath” in succession.  Then the die goes in via the cannula and yes you feel warm, yes there is a metallic taste in your mouth and YES – it does feel like you have had a wee. All this happens at once so you just need to lie there, breath as instructed and keep still – its all normal and all over very quickly.

17:00 Back to the vets to pick up  a sleepy cat who is minus two teeth but otherwise intact.

C and I both log back on to our laptops and finish up some work before logging off and gathering on the sofa to relax and reflex.  So much happened in just one day to move us forward but for now we are back to the waiting game.  With a holiday looming along with the July matching run deadline there is much for us to think about whilst we wait.

The Eternal Waiting Room

Apparently time is a constant.  It moves at the same pace no matter where you are or what you are doing.  I think this is a lie: It moves quicker on holiday, Sunday evenings and when you are drinking a glass of wine (or maybe that’s just the wine that moves quicker…) and it moves slower on Monday’s; when watching a kettle boil and waiting for test results and appointments.

My results from my day of testing did come back and I got the all clear to move to the next stage (hurrah!) which includes a chat with a kidney specialist (to talk through the procedure and the risks etc) and a CT Angiogram to look at the structure of my Kidneys and make sure they have all the right bits in the right places.

But whilst waiting for those results, and then the waiting for the next set of test I feel in a state of limbo.  Like I’m in one giant waiting room, just… waiting.  I can’t sit and relax at home – I either need to be doing something or trying to get to sleep to just make the next day come quicker.  At work, I’m going through the motions but none of it seems important or relevant.  I think of events and dates as either “Before I have X appointment” or “After X appointment”.  I am marvelling at people who can remain focused on other things as every waking moment I am fixated on the donation process.

Each result feels like a lock unpicked on the next door to another waiting room, and what worries me most is that at some point after all the tests are done there will be nothing left but to wait.  Wait for the next matching run; wait for the phone call to say we have been matched/not matched… rinse and repeat until we find the keys for that next waiting room door that will lead to an operating room and all that lays beyond it.

I’m a advocate of mindfulness and meditation so I know that living in the past or future is neither practical or productive as only the present is real.  That is why I am keeping up with journaling, meditating and writing short stories as in those moments I am not a potential donor waiting to get on a list, I am just being me.

Testing, Testing….

one-does-not-stay-calm-meme.jpg.pagespeed.ce.VVAcp12Gz4

Last week I had my second round of tests to check my suitability as a kidney donor.  The first round had been some simple blood tests and a chat with the transplant nurse back when I put myself forward to check my blood and tissue types, but this next round really stepped things up.  Here’s how my day went:

08:00. Arrived at the Medical Investigation Unit (MIU) at St Heliers.  I was weighed; my height measured and blood pressure checked and an initial blood sample taken before the main part of the test commenced. This involved an “contrast agent” called Iohexol being administered via a cannula.  I have fortunately never needed to have a cannula before so today was the today I discovered the veins in my arm are shy so mine was fitted to the back of my hand. It wasn’t in for long as first the Iohexol was administered and then the line flushed through.  After a short wait back in the waiting room to make sure there was no adverse reaction, I was free to go for the rest of my tests.

09:30. Over to the renal unit to see the Counselor.  This was a one to one chat so she could understand my reasons for wanting to donate; make sure I felt supported and that at any time I could change my mind and that was OK.  The main purpose of the chat is to make sure the donor is not being coerced or paid to donate and I think I made it clear I was doing this for all the right reasons. (not money!)

10:20. I headed over the the ECG clinic.  There was quite a queue here and as time ticked by I knew I would not be back in time to the MIU for my next timed blood test.  A quick word with the receptionist and she assured me it was fine to head on over to my other appointment and then come back when I was ready.

10:50. Back in MIU, a second cannula fitted to my other arm.  Once again, shy veins in my arm meant I had to have it in the back of my hand.  I really felt this one go in, but once in and taped down I got used to it.  Two lots of blood taken and I was done.

11:00. Out of MIU and over to Ultrasound.  A quick squidge of cold gel, some prodding around my tummy with the ultrasound probe and I am declared “Normal”.  This is good news on many levels, the main one being it means I have two kidneys – one for me and one spare, hurrah!

11:30. Across the hall from Ultrasound was the X-Ray dept where I went next for a chest x-ray.  Another nice quick and simple procedure with minimal waiting.  The trickiest part was getting the gown on and off – you’d think they would have come up with something better than all those little ties by now?!

11:45. Back over to MIU for my next timed blood test.  The cannula works well and the two vials of blood are taken in no time.  One more test left…

11:50. Back in ECG and this time no queue and I’m seen very quickly.  Some sensors are attached to my skin and the test begins. On the screen I can see my heart beating away and after a few minutes it’s all done.  The test looks “normal” but will need full analysis along with all my other results.  I found it amusing that as advanced as the machine was, it sill produced a paper output that I had to walk over to the Renal Unit on the other side of the hospital, but it helped kill some time.

12:40. Back in the MIU for the final blood sample to be taken to complete the five hour Iohexol test that will be the true indicator of my suitability.

Kidney function is measured as GFR and normal for a female adult is between 120 and 90 with 99 being average.  If mine is below 90, then they will not allow me to donate.  Hopefully, this will be another test where I will be “normal”… time will tell.

And that was the end of the day.  I fully expected to have lots of time waiting around, getting lost, being told I was in the wrong place/wrong time, but it all went like clock work.  I cannot praise the NHS staff enough. I felt well looked after and valued – it really is a world class service when working well.

First step to donation

Today I had my initial assessment for donation. It involved a urine sample; 12 vials of blood for various tests; height, weight, blood pressure measurements and a good long chat with the transplant nurse. I also managed to pour hot chocolate into my bag, but hopefully that won’t go against me.

The frustrating bit now is waiting for the initial results and hoping they don’t show up anything that will prevent me donating, or uncover any health conditions I wasn’t aware of. The nurse told me 25% of potential donors don’t make it passed this stage so fingers crossed I’m in the majority.

She also said that in the next round of tests they will be looking for my kidney function to be 90+ so it’s weird to have that kind of pressure to pass a test that I have no control over.

Talking through the donation process (assuming all goes well) was also useful and answered lots of questions and put my mind at ease just in relation to how much care goes into this from so many people.

We are some way off being accepted for the kidney sharing scheme yet but I feel positive. My blood pressure is good and I’m taking that as a good sign my kidneys are in good condition too. Time will tell….