Travel Dialysis Review site is up and running! (at last)

Front Screen

I have long thought we BigD-ers need a website where we could go for entering and reading simple reviews of holiday dialysis sites.

First, back in March last year, I thought, “Maybe I can build one!” So I had a go using WordPress Themeshop, after lots of emails from “helpful salespeople” but that was too complex. Then, in May I went to an online jobs site, where you pay experts to do this stuff for you. That was a waste of money. It took days to find someone who understood what I wanted and didn’t want the earth to do it. Once I chose someone, he was never available. It was not a good experience.

Swinburne University Community Collaboration

Finally, a friend told me about university community collaborations, where I could possibly work with IT students as part of their course, to help create and launch the site. I live close to Swinburne University, so I checked out the website, found the name of the Manager, Collaboration and Partnerships, and filled in the application form.

Sarah, the Manager, came back to me quickly, saying she was talking to relevant IT academics to see if this could fit as a student project.  After several meetings, the project got the go-ahead, as part of the IT Semester 2 course!  Winner!

Over the next five months, I met the students Matt, Angelo and Mitch, and their Supervisor, Janet. We had regular meetings, first to confirm the design and later to agree on how the system would look. They produced design documents, development and implementation plans and more. But most importantly, the developed the website.

Sample reviewsAnd it is beautiful to behold.

Once the Semester was over, they presented it to a range of Swinburne IT academics and their peers, to great acclaim.

1-Website Swinburne design Team

The magnificent Swinburne Development Team: (L to R) Supervisors Janet, Graham and Olga, students extraordinaire Matt, Mitch, Angelo and me soaking up the joy.

And they Invited me along, so I took photos, drank coffee and ate cake. To me, it was a double celebration: of their excellent coursework, of which they are justifiably proud and for BigD-ers around the world, the all-singing-all-dancing TravelDialysisReview website was born.

Launch

We uploaded the system in December, ready for release. However, it had no reviews, and it needed a few so that everyone could see how it all worked.

Then disaster.  I caught a bug and developed heart problems (as per my previous blog entries) and was admitted to hospital. TravelDialysisReview website progress ground to a halt. Until now, more than eight weeks later.

While I’m not 100% well, for the sake of expediency, I think it’s time I just put it up and made it available to all. I had hoped to have a few more reviews and maybe a couple of small training videos to show how it works, but they can wait.

Quick User Guide

In case you missed it at the top. the site address is: https://traveldialysisreview.com/index.php

1-Browse UnitsIf you want to find a review, you can search for the unit by city, suburb, country, unit name or address. If the unit has been registered, it will appear in a list. Click on the name and go to the review.

 

1-Add a unitIf the unit is not listed, you can record a new unit details (though you need to register first). Fill in as much as you can and leave any missing bits for others.

 

1-Add Review-001Once it’s recorded, you can enter a new review for the unit (you also need to be registered for this). Enter an overall rating out of 5, with side ratings for Comfort, Quality of Care, Cleanliness and Ease of Booking (also out of 5). You can click on each heading to get a quick summary of what you are rating.  Finally, add at least 20 characters about the unit.

That’s it.

Enter as many units and reviews as you like. Each new review appears at the bottom of the main screen after moderation. I promise moderation (checking for things that will get me sued) will be quick.

More soon.

Home at last?

I’ve been missing in action for most of January. Following the blood thinner hassles around Boxing Day, I caught some bug that attacked my left hip on 7 Jan. So before I could blink, I was back in hospital.

The usual ED blood tests indicated my old friend staph epidermidis, also present last October in my right hip. The usual treatment is 6 weeks of Vancomycin, which began immediately.

Over the next two weeks, I was discharged twice, followed by two re-admissions due to more infection and for low HB.

(One excellent thing that happened during one of those snap home visits was that Julie disappeared and returned with one of those electric easy chairs. With the help of relatives and friends, she unboxed it, plugged it in and I’ve been nestled it almost every waking moment since. Now I’ve just go to work out how to stop the grandkids fiddling with the control – especially while I’m in it.)

Back in hospital, ultrasounds, scans, and eventually an MRI found several pockets of some kind of fluid in my hip (maybe pus?). However, no-one could decide whether to drain or cut open my hip to get rid of it. Eventually, I had a needle inserted to draw out the fluid (aspiration). Not much fluid. Next, I had a drain tube inserted to try a slow drip release. Again no joy, and it fell out after the second day.

Around now, at last, a senior Infectious Diseases Consultant decided to look hard at my history. She found that this was the same bug going back to 2012. It seems that while Vancomycin kills it in test tubes, it doesn’t in my body. So she changed to a new antibiotic (Linezolid) which should polish it off after 6 weeks. Once that’s done, I’m to take another antibiotic for the rest of my life as a prophylactic, designed to stop any further infection before it begins.

Once all this was decided, four weeks after I arrived, I was released home on Feb 3.

I can’t say I’m better yet. Still limping and collapsing after the smallest effort. But there is progress. Yesterday Julie and I went out for coffee (bliss). Who knows what madness could follow over the next few weeks?

Which is important, because the infection is just a sideshow. The main game is my heart and the 90% blockage in my right coronary artery. And for the last few weeks, my AF.

So far, I’ve had three plans for going forward: all involved two specialists grinding down the blockage and putting in a stent.  Each time this has been cancelled due to my infection: I must first be infection-free. This could take another 3-4 weeks. All the time taking blood thinners to get me ready for the stent.

However, just today, my Cardiologist called to say the plan has changed. I must still become infection free, but now I need to have my AF reverted first, and then perhaps my blockage can be dealt with “medically”.

First, fixing the AF, probably by zapping. Just before the zap, I’ll have a TransOesophaegal Echo (TOE) – an ultrasound taken of the heart from the oesophagus, via the back of the throat. They are worried about the possibility of a stroke if the zapping releases clots into my bloodstream. So, if there are no clots around, my AF will be zapped. If there are clots, they will block them off from the bloodstream first. In preparation, I’m to stop the blood thinner a week before, then 3 days before onto Warfarin.

So what about the stent? Medically, long-term Warfarin may be enough to keep my blood thin enough to get past the blockage in the medium term. So maybe it can be put off for longer, unless I get angina, or fail a stress test, etc.

Next stop the TOE and hopefully the AF reversion.

My Boxing Day Test

The good news is that, as expected, I was discharged from the cardiac ward on Christmas Eve afternoon, just in time to watch Carols by Candlelight and wrap presents (Christmas tradition). And I was mightily relieved.

The following day dawned bright and sunny, and fairly quiet (at least in our household), so Julie and I had a leisurely Christmas breakfast, exchanged gifts and enjoyed a wonderfully relaxed Christmas morning.

IMG_6410

Diabolical jigsaw

We spent the afternoon with the rest of the family, ate too much, played complex board games with kids young and old, dozed on chairs and generally had a great day. We arrived home pooped, spent some time on our latest jigsaw (the Mona Lisa, a Christmas gift -– diabolical – too many black bits) and hit the hay. It was a great Christmas Day.

Home ambulance 2

Off to the Austin on Boxing Day

Which was good, because on Boxing Day I got up and went to the toilet and lo and behold, blood. Lots of it.  Groan. After a very short discussion, Julie called an ambulance. Within 30 minutes I was on the way back to the dear old Austin ED.

When I left the Austin on Christmas Eve, I was put on two new meds to thin my blood (Aspirin and a new drug called Ticagrelor [Tie-Kag-gr-law]), in preparation for the stent procedure. They also changed my anti-AF (Atrial Fibrillation) meds from Flecainide to Amiodarone, which is also more amenable to stent procedures.

The blood thinners were a good move from a cardiac viewpoint, not so good for someone with a history of diverticulitis (where small sacs in the bowel become infected and burst, sometimes causing bleeding), like me about a year ago.

About two months ago I had a small diverticulitis episode, without bleeding, and forgot about it. But my body clearly remembered. What seems to have happened is the blood thinners did their job well, also dissolving a clot that was holding back a bleed, and away it went.

They stopped the Ticagrelor immediately. Over the next two days, I had two more bleeds, the effect of which were tracked by ever falling haemoglobin levels. To compensate, I had a couple of units of blood during dialysis.

Austin CDU 4

The Christmas entrance to dialysis

Austin CDU 1

Christmas Dialysis elves

(It doesn’t matter how sick you are, there is always dialysis. Sometimes it is a comfort (especially if it is giving me blood) sometimes it is the last thing you feel like. Either way, when it’s BigD time, it’s BigD time, so grin and bear it.  As usual, no matter how I feel, the staff at the CDU are uniformly wonderful.)

On the third day, it seemed to have stopped. Things were less bloody. Then diarrhoea all night. It’s like my bum was cleaning house, like a lawnmower engine that hasn’t been used for a while sputters and spurts when you first try to start it.  Once it starts, all is well. So was I.

Then some interesting news. The cardiac doctors wanted me to re-start Ticagrelor within a week of discharge, so my blood is thin and ready for the procedure. What’s more, I should stay on it for 12 months after the stent procedure.

The blood drained from my face (I don’t know where it went but it stayed inside me). Julie and I are very nervous about this.

I made a rush appointment with my cardiac specialist to talk it through. I went to see him yesterday.

Unfortunately, the night before the appointment, my heart went into AF. The switch from Flecainide had left me a little short of protection and AF arrived like a runaway blender. Combining AF with a 90% blocked coronary artery can be challenging. I felt so weak I could hardly walk to the lounge from the kitchen without my heart beating hugely and me feeling highly collapsible. I wasn’t sure whether it was the AF going faster or the blockage causing a mini heart attack. I’m still not, but I’m still here, so it was probably the AF.

Fortunately, I had this ideal cardiac appointment booked, and AF was the first topic we discussed. He doubled the Amiodarone dose so my stores will be at full protection all the time between meds. (I took two tablets last night and it’s not over, but I’m a lot better today.)

Then he gave me a stay of execution on the blood thinner for 12 days. A scare delayed 12 days is 12 days enjoyed. Maybe any bleeding that was holding off will heal properly between now and the procedure day (19 January – two weeks today) so the bleeding won’t restart.

Maybe not.

Anyway, that’s the state of play. I’m mostly looking forward to the procedure, so I can get fit again, put on some muscle, go walking and generally reclaim my freedom. But I’m mostly dreading the blood thinners. What if I bleed again? Will they still do the procedure? If so, will I need the thinners for 12 months?

I’ll have all the answers soon enough. So tune in two weeks from now for the next exciting instalment.

Back to ED – but not for kidneys

Just lately I’ve taken to slowing down. Not by choice.

It’s three weeks after my carpel tunnel #2 procedure, and two weeks after I had two units of blood at dialysis, to recover from the blood loss. So my HB should be pretty good and I should be jumping out of my skin.

But I can’t make it around the block. I walked 100 metres from the car to meet Max for coffee and I was a puffing, exhausted wreck. And my heart was beating like a base drum, echoing throughout my chest. It took about 10 minutes (and at least half my coffee) to recover. Maybe this is not just a haemoglobin problem.

Like any red-blooded man, I ignored it as soon as it went away.  Trouble is it kept coming back, from less and less exertion on my part.

I really hate going to hospital. I fight like a trout to stay away. But last night, sitting on the bed with my heart pounding from the mammoth effort of walking from the lounge room, Julie and I decided it would be best to go under my own insipid steam, before I was carried there by a van with flashing lights.

So around midnight, five days before Christmas, we walked into Austin Hospital ED, registered, and lined up for the Triage nurse. I think I’m having a problem with my heart are magic words that get you close to the front of the queue. Into a cubicle: blood tests (what else?), an ECG and, later a chest X-Ray.

By 5am I was admitted to the cardiac ward. My new nurse promptly connected me my new wireless companion for the duration, a five lead ECG monitor, as I sat on my bed.

It was isolation room. Not because my heart problems were infectious, but because I have VRE (Vancomycin-resistant Enterococci). It’s a bug that lives in my bowel that, like the name says isn’t at all fussed by our most potent antibiotic. It’s harmless in the bowel, but if it leaves home and takes up residence in other parts (of the body), it gets all nasty and very hard to kill.

Not that I’m alone. VRE is one of the less attractive and most common side effects of hanging around hospitals. It’s pretty common amongst us BigD-ers, since we have low immunity, are always gathering together, either in hospitals or units and sharing facilities. I caught it a few years ago on one of my previous visits.

But it’s not so common in cardiac wards and they work hard to isolate it. So here I am in this fairly bare isolation room, facing days of tests sprinkled with dialysis…

It’s now Christmas Eve. I’m an old hand on the ward. Three days ago I had an angiogram and found that I have a serious calcium blockage in my right coronary artery, where it joins the aorta. It needs to be drilled out and a stent inserted. The Christmas period is not a good time, so I will have the procedure in a couple of weeks. I am now pretty stable, with new meds and all should be well if I don’t exert myself (which I won’t).

I’m having dialysis today in my room (third time) and if my bloods are ok, I’ll be discharged today, in time for Christmas.

I have written many times that dialysis patients rarely die from their kidney problems. It is almost always from heart attacks, as the constant fluid overloads and general flood of loose calcium and other chemicals into the arteries eventually exhaust the heart and it stops working. And here I am now, living proof.

Luckily, despite dragging my feet, they have found my problem early, and once the stent is in place, things should get back to relative normality. I know now to take these warnings seriously and to stay vigilant for the next calcium problem.  One thing about BigD; it’s never boring.

I’ll let you know how it goes after Christmas.

Meanwhile, enjoy the time with your family and friends. I know I will.

Test Drivers Needed! (closed Tue 28 Nov)

Firstly, many, many thanks for your kind thoughts and good wishes. I very much appreciate them. And they must have worked, ‘cause I’m back!

I’ve been going on for some time now about how important it is for people on dialysis to travel if they can. Across the state or to a foreign country. Not only can it be a wonderful adventure, it can change your whole outlook: My life is not just what I do between dialysis runs, I’m a traveller, who dialyses every now and then between adventures. (more…)

Hospital holiday

Hi everyone. Just a quick post to let you know I’m still alive and kicking. My silence is due to spending what seems to be my annual few weeks’ stay in hospital due to unknown causes.

I went in with a sore hip, which, together with a fever implied BUG.  After many blood and bug-in-a-bottle tests, together with heroic doses of vancomycin, I seem to have recovered.  The bug defeated, though at some cost: daily blood and bottle tests helped drop my HB from 110 to 74.

I’m home now, but with so little energy, my Nephrologist ordered four units of blood. I had the final 2 units last night on dialysis. So this morning I’m waiting for a burst of energy that will enable me to walk further than twice around the bed.

But things seem to be on the up, except the hip, which is taking its time. Hopefully, I’ll be back to the blog with inspiration and enthusiasm in the next couple of weeks.

Cheers.  Greg

Sensipar’s® rocky side effects

Ozzie waddled towards me with a look of mild concern on his face, looked up and said “Poo”. The cat smiles smugly and leaves the room. Julie is wrangling the other four grandkids in the kitchen, helping them cook dinner. Nothing for it. Find a new nappy, wet a face washer (it wishes it was a face washer), a bag to dispose of the evidence and get down to it.

The little joys of being a grandparent.

Like most people associated with little kids, I’m fairly unmoved by poo. Ozzie’s comes from a healthy body, so it’s sometimes messy, but mostly harmless, and water washable. Anyway, anyone who’s been through a transplant or any other major drama that involves ingesting strong drugs knows how thin the veneer is between continence and incontinence (of any variety).

Take this week. After six months of gradually deteriorating Calcium, Phosphate and Parathyroid levels, I re-started Sensipar®. I’ve been to this movie several times before, but such are the delights of the human body, that reactions can vary each time.

What’s different from previous times is that over the years my Parathyroid gland (which was mostly removed seven years ago) has grown back and completely screwed my Calcium/Phosphate balance, to the point where I’ve lost a lot of calcium from my bones.

Sensipar shuts down my parathyroid and my body starts to move calcium from my body back to my bones. To make sure I don’t suffer from calcium withdrawal, I have to take LOTS of calcium tablets. The resulting side effect is industrial strength constipation.

Most people on dialysis are familiar with the constipation spectrum. The sweet spot (so to speak) is at the centre, where a movement is like toothpastesadly, a place rarely visited by BigD-ers. Because we are dialysed fairly dry, most of us live in the zone between pebbles and rocks.

IMG_6132Many mornings after dialysis, when I’m as dry as a chip, things can be a little tough. Passing something the size of my BB-8 robot’s head is challenging but doable. But with the calcium – Sensipar combo, it takes just one sleep to hit the concrete end, where things get harder and bigger, more like BB-8’s body.

After several hours of desperation, pain and trauma, BB-8’s ghostlike, calcium-tinged brother appeared on the scene: relief and exhaustion in equal amounts. More importantly, I realised that I had to avoid a replay of this drama tomorrow at all costs. I. needed chemical assistance in the form of a laxative, and I needed it right now.

IMG_5913After asking around and a couple of false starts, I settled on Benefiber (US) (Aus) – around $9 at Chemist Warehouse). It’s made from wheat dextrin, is gentle on the stomach and it works. I take two teaspoons with breakfast (I mix it with my milk before I pour it on my cereal), and two with dinner (in a small drink of water). It also comes in small sachets (like sugar) so I can use it when I’m eating out without looking like some kind of coke addict.

I won’t need it forever: only until I stop taking heroic amounts of calcium.

But it will stay in the cupboard. There is any number of things we take that cause constipation, from just about everything made codeine and paracetamol, opiate-based drugs, including Oxycodone (also called OxyContin), many anaesthetics and weight-gain supplements like Fortisip and Resource. There are ways around using (or not using) all of these, but Benefiber is a great all-around liberator when we get caught at the wrong end of the spectrum.

Of course, Ozzie is a different matter. Constipated he is not. Maybe I should make sure the Benefiber is out of his reach.

Then there this: more shameful than inspirational

Again, I’m a little late to the party, (this aired in May)  but have you seen this story?

It is a truly shocking report. it confirms our worst fears: US dialysis is in crisis. The most expensive dialysis service in the world has the highest dialysis mortality rates.

Two for-profit giant companies (DaVita and Fresenius) deliver 70% of the care, overwork and underpay staff while making enormous profits. From this report, it is clear that the industry is overwhelmed by bad incentives, poor oversight, and profiteering.

Any wonder why over 70% of the fistula rupture stories on this blog are from US readers.

The one small light at the end of the tunnel is the California Dialysis staffing bill.

But first, have a look at the report (Language warning!).

Medscape has a great article about\ the California bill, (it’s free, but you may need to log in), that has attracted a huge number of comments, all in favor.

For example, one nurse wrote:

…The problem arises when you take care out of patient care.  By this, I  mean that the monetary value of running a clinic outweighs the quality of care provided by the staff.  You can not expect Staff to give the quality of care when they are overloaded with 4+ patients to care for and only have 15 minutes between each patient to rinse back, take VS, close up their access (be it a catheter or a access (graft or AV Fistula)) and put another patient on by doing their VS, quick assessment, cleanse their dialysis catheter/ graft/av fistula, start their treatment, document on the patient and give report to a charge nurse.

And another:

…I was tired of on-call and went to work in-center and my ratios in New Jersey were 3 patients per tech, nine patients/RN.  I had to assess 9 patients and put on 3 every shift and when you have techs they may put the patient on the wrong bath, not do vital signs timely, with no time between shifts if you had a patient hypotensive, it was insane.  A patient died on that unit, but not assigned to me that day because the techs did not do their vital signs and the nurse was busy doing something else. The B/P kept on dropping and no one assigned in that area ever told the nurse assigned there.  You still have to do care plans, monthly notes, give blood, give meds, and get yelled at because you are not doing turn over fast enough.

How the No boosters keep a straight face is beyond me.

One interesting thing from the video: when these companies are sued, they settle.

Food for thought for anyone who has had a loved one die from a fistula rupture in one of their units,

Community Run Dialysis – Inspirational!

Over the last week, I’ve been working on a new project that involved making a list of all the dialysis units in Australia (more on that soon). In the process, I discovered that all units are either public (free via Medicare) or private (fee charging), except one, which is owned and run by dialysis patients and their families.

Run by patients and families? What the…?

Of course, I had to know more, so I contacted them and discovered firstly that they’ve been around a while and I’m a bit late to this party. But that made finding them even more heartwarming and inspiring.

This community run dialysis service follows a very different model. It is focussed not just on dialysis, but also on the community, on keeping people together. Imagine a place where family and community, culture and country are integral to a happy and fulfilling life. Where people live in small communities, huge distances from large population centres.

Imagine also, that many of these people can, for various reasons, be more than twice as susceptible to kidney failure as the rest of us. And, because their communities are too small to justify individual, government-funded clinics, the only option they have is to leave their community and move to a city where they can dialyse. That is, move permanently from their lifetime home.

KintoreMost are elders or elderly. Their separation hits them hard: they become lonely and isolated and begin to lose the joy of life. Their families and communities miss them; miss their wisdom, guidance, and love. People began to worry about the future of their communities without elders there to provide leadership and pass on cultural knowledge; there was a very real risk of disintegration.

So they drew deep from their community, art, and culture, and changed the game. I’ll let them take up the story:

Determined that renal failure should not be a one-way ticket … away from family, country and everything important, senior men and women created four collaborative paintings.

Orange -bg1000

Kintore Women’s Painting

Browns KintoreMens

Kintore Men’s painting

With the help and support of Papunya Tula Artists (their artist’s community), Sotheby’s Australia and local NT politicians, these were auctioned at the Art Gallery of NSW on the 11th of November 2000, raising over $1 million dollars to set up a dialysis service at Kintore (the first of the tiny remote communities in the Western Desert of the Northern Territory).

Patrick Tjungurrayi

Patient Patrick Tjungurrayi receiving dialysis in Kiwirrkurra with his grandchildren.

Since the commencement of dialysis treatment in Kintore in 2004 we have grown to have dialysis units in 8 remote communities, as well as at the Purple House in Alice Springs. 

Truck and chairThen, in 2011, we created the Purple Truck, our mobile dialysis unit, to give patients the opportunity to spend time in their home communities where there is not a permanent dialysis unit, where they can to reconnect and recharge.

Janie Miama at Docker River

Patient Janie Miama receiving dialysis in Docker River

In 2003, they incorporated as Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation (Western Desert Dialysis). The name means ‘Making all our families well’ and it recognises that people must be able to stay on country, to look after and be looked after by their families.

Sarah brown 2

Western Desert Dialysis CEO Sarah Brown with her award

And success breeds success. As they have grown, they’ve attracted other talented people, like their Chief Executive, nurse Sarah Brown, who was voted Australia’s top nurse for 2017.

And organisations like Medicines Australia, Papunya Tula Artists and Fresenius Medical Care, whose generosity and support helped start and run the Purple Truck.

Governanmce AwardThere’s more. In November 2016, Western Desert Dialysis won the 2016 Reconciliation Australia/BHP Billiton Sustainable Communities Indigenous Governance Awards, Category A Award for incorporated organisations. Professor Mick Dodson, said: “It’s their humanity that stands out in their governance. They’re a family that really cares for every member in the way they deliver services. Aboriginal culture has been wrapped around access to modern medicine and allows it to be administered in a holistic and culturally appropriate way. They’ve … got the administrative nuts and bolts of good governance and are taking innovative approaches to community leadership.”

Take a bow, Western Dialysis Directors.

Still more: Over the last couple of years, they have developed some great education resources for dialysis patients, including this video (in 3 local languages as well as English). It’s excellent. Simple, easy to understand and educational for anyone on dialysis. Check it out!

How great is all this? So many good messages. Beginning with the amazing power of art to influence and change lives.

And smart, inspired people taking responsibility for their own health and well-being to deliver dialysis the way they most need it.

Sounds like yet another example of the ePatient movement, not just sitting back and hoping.

There is a lot more to their story: Check out their beautiful website (showing some of the fabulous artwork) and subscribe to their mailing list. I have a feeling there’s a lot more excitement to come.

Will my boyfriend die young?

Kristy sent me an email recently:

Good evening Greg. 

My boyfriend suffers from dense deposit disease and although he is fine at the moment, I fear the time he may need dialysis or a transplant. I suffer from anxiety so it’s hard to shake these worries. He’s very active, likes a drink, likes to socialise and I just worry about how much of an impact kidney failure will have on his life. Any experience you could share would be a big help to me. At times, I catastrophise the thoughts to simply the fear that he will die young (he’s 26 at the moment).

Kind regards, Kristy

Me:

Hi Kristy, thanks for your email. As I understand it, dense deposit disease is bad news for kidneys, in that it primarily affects kidney function. So you are right, kidney failure is a likely outcome in the future.

How far away that is, only time will tell. Everyone is different, but even sick kidneys can hang on to some function for years. I was diagnosed when I was 20 but, by gradually changing my diet and keeping reasonably fit, I didn’t start dialysis until I was 43. So I had 23 years of fairly normal life before dialysis. I say fairly because during the last couple of years I felt progressively sicker. But during that time, I got married, had three kids and lived a full, satisfying life. Then, of course, I went on dialysis.

At the time, I thought my life was over, but within a few weeks I began to feel healthy again and found that I could still live a full and healthy life: I just had to build dialysis into my weekly routine.

This pattern is not at all unusual, many people have the same experience. And it is likely that you and your boyfriend will too.

Your boyfriend is your boyfriend because of who and what he is and how you are together. Those things won’t change once he starts dialysis, even if he has to modify his life to fit it in. The challenge can bring you both closer and make your bond stronger (it did for me and Julie). Life will go on and you will be happy and sad, frustrated and delighted in the same way you are now.

So don’t catastrophise (I love that word!). Take the long view and all will be well.

Regards, Greg

From Kristy:

Greg, thank you so, so much for this email. It has really helped me to feel a sense of ease regarding the future. I really appreciate you taking the time to respond.