Last week Shirley (not her real name) wrote to me.  She was worried about how her relationship with her boyfriend would change (or survive) now that he has kidney failure.  I think Shirley’s email, and maybe my answers, will be relevant to many other members of the BigD club, not the least because they will realise that they are not alone.

Hi Greg,

My name is Shirley and I came across your blog through the Kidney Australia website. I’m sure you get plenty of e-mails, thank you for taking your time to read this!!

My boyfriend has kidney disease with a function of 50%. He is 32, eats healthy and is generally fit.  Over the past few months he has become increasingly tired which is affecting what we do on a weekly basis. I’m 25 and have many things I want to do in life but am unsure if we’ll get to do these things.

I guess what I am asking is how did your experiences with kidney disease affect your relationship and the things you did/do with loved ones?

I am really struggling with everything that is going on as I want to marry my boyfriend but he feels that he is limiting my life experiences as we don’t go out much anymore, leave places early etc. I feel selfish if I want to go for a night out etc. so I usually make sure we’re doing movies and dinner or something where he can go home early to sleep.

I know it sounds silly about ‘a night out’ but I feel like this is the time I should be doing all this before life gets ‘serious’ and with my partners kidney disease all these decisions become ‘serious’ and it scares me!! I could just be young and naïve and might look back in 5 yrs and think bloody hell I was upset about going out? Lol but please understand that I’ve had a lot of growing up to do and have made a lot of changes to suit my boyfriend’s needs. It’s never bothered me but has come up in the past month and is impacting us dearly.

We want to turn around kidney disease ruling our relationship and determining our future. I had a few questions, whenever you have time please respond. Any advice or experiences would be much appreciated

• What things did you do to ensure kidney disease did not stop you from your day to day things?
• How did your day to day life change as you got older? Is there a big impact?
• If you have a partner how did they cope with the kidney disease? What changes did you both have to make?
• When did you have to get dialysis and how did this impact your day today life?

I’m sorry for all the questions and I’m sure I could just look it up on the net but I was desperate to contact someone who has experience and understanding with kidney disease. I am scared for my boyfriend, I love him very much and am scared how this will impact us emotionally, socially and financially. I know people would say if you loved him you would just stick by him and work through it but it’s not that easy and I feel immense pressure because I love him so dearly but don’t know how and if the kidney problems will impact our future a lot.

I really appreciate your time in reading this e-mail. Your blog is amazing and you are truly an inspiration.

Kind regards,

Shirley

Hi Shirley, thanks for your email.  You are not alone. Many people feel as you do when kidney disease attacks their partner:  How will this affect our lives?  How will it affect my life?

Unfortunately, the answer to both those questions is quite a bit.  Kidney disease is a game changer, sending your lives off into a new direction.  Not necessarily a bad direction, just a new, usually unexpected one.

So, what can you expect?

It sounds like your boyfriend’s kidney function is slowly dropping.  Eventually, it will fall below the level where he cannot live without kidney replacement therapy (usually dialysis).  During this early stage, your social options will be restricted.  He will become progressively weaker and more easily tired, have headaches and nausea; you’ll leave social events early, maybe a miss a few.  He won’t be able to travel far from home/hospital.  His doctor will prescribe progressively more food/protein restrictions and he will feel pretty miserable.  He may be forced to move from full-time to part-time work, or work may become too difficult.

Eventually, he will go onto dialysis, typically three times a week for about four hours per time. The rest of the time is yours.  A surprise for most people is that after a few weeks they begin to feel much healthier and have more energy.  In fact, for much of the time outside dialysis sessions, life can come pretty close to what it was before kidney failure, especially when you are young.  If you have a flexible employer part- or full-time work becomes possible. Travel takes a bit more organising, but is definitely an option.

If your boyfriend has a transplant, in most instances, he will stop dialysis and live a normal life.  He will take anti-rejection drugs for the life of the new kidney, but with a healthy transplant, your life together can be all you want it to be, including travel, socialising, some sports, and full-time work.  A word about transplants: think of them as another treatment for kidney disease, they are not a cure, and like all large operations, some fail and can give you a very difficult ride.

A key element while on dialysis and with a transplant is to keep fit.  Getting back to the gym as quickly as possible once things settle down helps you get back to your day-to-day life.

So, depending on the stage of kidney failure/treatment you boyfriend is at, you will have different challenges, some physical, more emotional.  It can be a heavy load but the big things in life, marriage, children, travel and adventure are still on the cards.  Life can still be a joy.

Lastly, I know several young couples living with kidney failure and dialysis.  In the main, it has strengthened their relationship and they are living happy, fulfilling lives.  However one married couple has parted.  The husband was on dialysis and though these things are never clean cut, part of the reason they separated was that his wife found it too difficult.  He has since found another partner.

I hope this is of some help in answering your questions.

Good luck and keep in touch!

Regards,

Greg

A few weeks ago dialysis nurse friend of mine asked me to check out the iPhone apps for people on dialysis and with kidney failure.  Since last weekend was a long weekend I finally had time to do it.  I limited my review to iPhone and iPad apps available for people:

• Who have kidney failure or
• Are on dialysis or
• Who are contemplating or have received a transplant.

It was a bigger job than I expected – I searched on four terms: “dialysis apps”, “kidney apps”, “renal apps” and “transplant apps” and found around 100 apps that are associated with one or more of them.

I worked through each app, either using the description and screen shots on iTunes, or by purchasing the app and working through it.  My final list has 63 apps that fell into one of six categories:

Category                                        No. of Apps

On-Dialysis                                            4

Have Transplant                                      1

Have Kidney Failure                                8

Clinician (renal nurse/technician)             14

Nephrology professional                          14

Clinicians and professionals                      9

General (applicable to all categories)        13

                                                    Total  63

Disappointingly few apps are designed for people on dialysis or transplant recipients, with a few more apps for people with kidney failure. A total of 36 apps were for clinicians, nephrology professions or both (I will list these apps in my next review  post).  The remaining apps were of a general nature that may be of interest to all categories. 

REVIEWS

Since there are so many apps to cover, I will publish the reviews batches over the next few weeks, beginning with the Dialysis, Transplant and Kidney Disease apps. 

On-Dialysis Apps

Though 22 apps are listed in the search result, only 4 are aimed at people on BigD.  The quality and value is pretty thin.

Sunlight Health – 3 Stars – Free

Register of US hospitals, dialysis units, nursing homes, health care suppliers and prescription drugs with rating and quality information drawn from consumer reports and from US Medicare’s Hospital Compare database.  Sunlight Health is part of the “Sunlight Foundation, a non-partisan, non-profit organisation to that uses cutting-edge technology and ideas to make government transparent and accountable.”

This is a very comprehensive app, though limited to the US for location information.  For dialysis centres it lists location by zip code with quality levels, including patient survival rating, dialysis adequacy, etc.  

The drug list is extensive, showing cost comparisons of various brands (per day per dose), a description of the drug, where it is used, efficacy, etc, and a list of other drugs in the same class.  All entries are sourced and dated.  Some drug classes aren’t listed (eg antibiotics and ED drugs like Viagra and Cialis) 

This drug information is designed to help people make more informed decisions. While limited to drugs sold in the US, this information is of value to people in most countries. A reliable source of information and support.

Dialysis Finder – 2 Stars – Free

Locates dialysis clinics throughout the US. Provides contact information and driving directions for over 5,500 dialysis clinics.

OK app for people on dialysis who US residents or travellers to the US.  Simple to use.  Advertisements across the top of the screen obviously used to pay for the app.  Limited to US.  Not in the same class as Sunlight Health.

Kidney Journal – 1 Star – $5.49

A logging app that enables patients to record all the treatment (including dialysis) and medication details ongoing and to obtain charts and trend information.

Kidney Journal is a good idea, and it could be quite useful IF IT WORKED. It appears to have been released too early, with minimal testing and many bugs. Only the navigation pages work, which are incidentally the ones shown in the iTunes summary.   Is this just a cash generator for the unwary, or is it a genuine attempt to build a functional app for dialysis patients?  Since it was published in 2009, I suspect the former.

Dialysis Apps – Zero Stars  – $0.99

Offers a range of games and activities that dialysis patients can play/do while dialysing.

This is essentially a feeder app in more ways than one. Ostensibly it is a useful list of games and activities.  However each game and app listed also costs $0.99.  Bearing in mind there are thousands of free games listed in iTunes, in addition to old favourites (like solitaire) and powerful mind exercise games like those from Lumosity, this app seems to offer very little value.  It looks more like a $ feeder app for the developer.  Hopefully I will be the last to get sucked in to buying it.

Have Transplant Apps

Surgery & Transplantation – 2 Stars – Free

This app is a plain English reference dictionary describing commonly performed transplants and major surgery.

Another Michael Quach app.  He has been accused of spamming the apps market and has published more than 90 apps of minimal value.  This is no exception.  Not specifically aimed at kidney transplants, but designed as a first stop for people new to transplants or other surgery.  The dictionary is limited to 32 definitions/descriptions.  It is unlikely you will not open it twice, since there are many other more useful dictionary apps available.

Have Kidney Failure Apps

Renal TRKRR – 4 Stars – $8.49

Renal tracker is a kidney disease management tool which enables patients to take an active role in their own healthcare.  Components of the tool include:

• Nutrition Trkrr shows the levels of potassium, phosphorous, protein, sodium, carbohydrate, and water consumed throughout the day. RENAL TRKRR compares these levels with nutritional guidelines set by their physicians/dietician
• Health Trkrr tracks kidney health and diabetes lab numbers
• Medication Trkrr allows users to carry their most current medications with them at all times
• Graph and compare all Trkrr information over time to see how you are doing
• Email important information to doctors and keep them treated on your progress
• Set reminders for medication and doctor visits as needed
• An electronic log and charting tool that records details of diet, tests and medications.

This is a comprehensive app that covers the spectrum of information a kidney disease patient needs to manage their condition.  As a complex app, it has learning curve, but it is easy to start with small entries of things you know (eg medications, food preferences) and to expand as the information arrive (eg lab results).  It is for kidney disease only, no specific dialysis data is collected. 

Naturally, as a logging tool, it is most appreciated by the anal amongst us.  Though it is likely that the charts and trend information may justify maintaining your data.  Time will tell whether it is worth the moneyl.

Kidney Diet – 3.5 Stars – $5.49

A food analysis tool for people with kidney disease.  It tracks potassium, phosphorus, protein, sodium and fluid levels in various foods.

Listed as one of the 10 best health apps by Yahoo.  With Kidney disease as its primary focus, this app could be very useful for people in early stage kidney failure.  It can help educate on the good food, the bad food and the ugly food that tempts us all day, every day.  Though it is unlikely to be used every day, setting up a typical meal week will provide an excellent guide for healthy eating.

Then again, my anal friends (we all have a few) may well use it every day.

Protein Calc – 3 Stars – $0.99

Tool for calculating and tracking daily protein intake.

Published by the Universal Kidney Foundation a not-for-profit of Burton, Michigan (universal?).  With Kidney disease as its primary focus, this app could be useful for people in early stage kidney failure, helping them learn about kidney diet. 

The app is a little more cumbersome and less comprehensive than Kidney Diet (above). The fonts in the food chooser are tiny for us vision challenged.  Though it is unlikely to be used every day, setting up a typical meal week will provide an excellent guide to the protein levels in each meal.

Glomerulus – 2 Stars – Free

Tool for calculating how many grams of protein consumed at each meal.

With low protein diet as its primary focus, this app could be useful for people in early stage kidney failure, helping them learn about kidney diet. 

The app ocusses on each meal.  Once you have made the calculation, you must clear the result to make the next one.  Nothing is stored.  There is no trend analysis, graphing, etc).  This is a limiting factor and if you need more detail and support, Kidney Diet is probably the answer. 

Kidney Diseases –1½  Stars – Free

This app is a plain English reference dictionary describing kidney diseases.

Yet another Michael Quach app (see Surgery & Transplantation).  This is a minimally useful first stop for people new to kidney failure.  The dictionary is limited to 17 definitions/descriptions.  It is unlikely you will open it twice since here are many other more useful dictionary apps available.

Enough for now.  More to follow over the next few weeks.

Julie and I flew from Melbourne on 6 May at midnight and after a three-hour break in Hong Kong we landed in London on 7 May at 4pm.  Allowing for the time zone jumps, that’s about 24 hours in the air.

A few weeks earlier I spent three weeks in hospital with some bug and my haemoglobin had dropped to 7.  It was around 9 when I got onto the plane.  We debated whether I (we) should go at all, but my health was improving and frankly it is always easy to find an excuse not to travel.  If you give in, you will never go anywhere, so we decided to push on.

I rarely sleep in planes, and dread long hauls. True to form, I staggered bleary eyed through UK Customs and passport control feeling weak and tired.  Luckily our no. 2 son Liam was there to meet us, and he managed all the heavy lifting (not just at the airport, but pretty well every day!).

We drove to his flat and I gently lowered myself onto our bed for a nice 12 hour snooze.  Julie and Liam were out and about, on a long walk to Regent’s Park and some dinner before coming home to bed at a much more respectable 10pm.

London – Diaverum Forest Hill

I was booked into dialysis at Diaverum Forest Hill the next morning at 0730, by which time I was awake, if not firing on all cylinders.  As you well know, dialysis is a must show activity, no matter how you feel (no option to call in sick!).  Forest Hill was about 40 minutes away by cab (or two trains, one underground, one overground and two short walks) in South London.  I chose the cab (₤30 from St Johns Wood) and arrived at about 0720 complete with backpack full of goodies.

The Forest Hill unit has 20 seats and is busy all the time.  They very graciously moved someone to an afternoon session so I could dialyse as early as possible after I arrived (I arranged this before we left home).  Though I didn’t feel like it, I still put in my own needles (it is the one area of control you have no matter where you dialyse – and you only have yourself to blame if you stuff up), and watched closely to be sure all the settings were as specified by my unit (they were).

Mihaela, the Deputy Nurse and the staff were very friendly and helpful.  The other patients watched and returned my nod, but remained non-committal.  But no matter where we come from, we are all in the same boat and with so much in common, things soon warmed up.

After a couple of naps, a cup of tea and my snack, it was 1040 and time to go home.  I felt much better and was ready for the train trips home (accompanied by both Julie and Liam).

I eventually had seven sessions at Forest Hill, mostly starting at 1730 (with the occasional machine failure pushing that out an hour or so).  It was a very good experience and I gradually felt like I knew the place.  The only hassle was the distance from where we were staying – forty minutes plus each trip (trains one way, cab return).  Next time I will arrange for a more convenient distance to maximise our holiday pleasure (if you can’t do that on holidays, when can you?).

Forest Hill is a private unit and charges a few hundred pound per session.  Go to http://diaverumholidaydialysis.com/wp-content/uploads/2011/03/UK-London.pdf for details.

Within about three days I was feeling pretty good – better than when I left.  I felt absolutely justified in deciding to travel.

Oxford – Churchill Kidney Unit

At the start of the second week, we drove to Oxford, history mecca and stepping off point for The Cotswolds and all parts west.  I had booked in for two sessions at the Oxford Kidney Centre, which is an NHS Renal and Dialysis centre.

From the outset the staff at the dialysis unit were very helpful.  I spoke to Lin, the Unit Manager on the phone from Australia and she immediately offered me spots on the Tuesday, Thursday and Saturday Twilight shifts.  Later Allie Thornely, the Renal Dialysis Matron, told me they are very positively disposed to supporting holiday patients and can be flexible on the number of days available.  This is a great help when planning a UK holiday, because Oxford is so central for touring around the south of England.

The staff were very welcoming, friendly and competent and were happy to do that little extra.  My only (minor) issue is that all dialysis is on beds, not chairs, and I find it difficult to sit up to do things (like computing).  Beds notwithstanding, I felt very confident and safe and would certainly return should the opportunity arise.

The treatment was free (reciprocal agreement with Australia) and there were no other charges.  Go to http://www.oxfordradcliffe.nhs.uk/forpatients/departments/renal/kidney/kidney.aspx for contact details.

Stockholm – Dialys Unit Södersjukhuset

I emailed Eva Regnell, the Coordinator of dialysis at the Södersjukhuset Njurmedicinska kliniken (South Hospital, Renal Medicine), part of the Karolinska University Hospital.  Again, she immediately offered me holiday dialysis spots of my choice.  Initially, I booked only one session on Saturday 19 May, because I didn’t know if they offered Sunday dialysis.  I would have preferred both days because of the long gap coming up on the return trip home.  I asked during the Saturday session and found they have a small group that dialyses on Sunday, which I was allowed to join.  Very accommodating.

The unit is very centrally located in on Sodermalm, easy access by bus or cab.  It was just 4km from our hotel.

The unit is a very slick operation, with 30 beds (no chairs). Staff are friendly and competent and I felt very confident and safe.

A couple of things I’d not seen before:

• They use special bull-nosed needles, called BD Blunt Fill needles to scrape off the scabs if you are buttonholing.  They are still sharp, but not so pointed, and are quite effective.

• The hospital is so big that each ward is issued with a scooter so they can get around quickly.  Very amusing to see a staff member zing past.

Again, I would definitely return if the chance arises.

While the treatment was free (reciprocal agreement with Australia) there is a 370kr ($50) admission fee for each session (dropping to 200kr ($28) for the third and subsequent sessions).  Go to http://www.karolinska.se/en/Departments/Departments/Renal-Medicine/ for contact details.

(I have email addresses for each centre, but for privacy reasons will not publish them on this post.  Please feel free to contact me for more.)

I am very much looking forward to my next trip.

This is my first opportunity to make a post since we arrived.  A very long flight (26+ hours) from Australia to the UK, dialysis almost every day either at Diaverum Forest Hill, the Oxford Kidney Centre or the Dialysis Unit at Sodersjukhuset in Stockholm city.  All of these working towards one end: having a great time off the machine.  And we certainly have!

Only two days to go and then the reverse journey home: all good things must come to an end I suppose.

All the BigD (and other) details in my next post once I’m back home.

Well, after months of planning and fitness doubts, we leave tomorrow on our UK and Swedish adventure.

About the China Leg

Originally we were to spend 6 days in Beijing before going to London, but after three weeks in some kind of unhealthy haze, I decided it was too risky this time.  I have a reasonable understanding of Mandarin,including important phrases like:

• Bushi Wo Zuode – I didn’t do it!
• Zhikong wo shenma? – What am I accused of?
• Wo keyi da dianhua gei wode dashiguan ma? – Can I call my embassy?
• Wo xiang yi bei kafei – I’d like a cup of coffee and most important,
• Wo xuyao touxi! – I need dialysis!

But not enough to be confident if things go wrong, having been wrong so recently.  So, for the second time, Beijing has eluded me.  But all is not lost.  I am determined to get there, either later this year or this time next year.  Third time lucky.

For those interested, after a long search and some help from my Chinese friend Rebecca, I had arranged dialysis at the Chinese-Japanese Friendship Hospital (中日友好医院), which is located about half an hour north of Tiananmen Square.  The cost is 1,500 Chinese Yuan per session (about US$250), plus 2500 Chinese Yuan (about US$30) registration fee.

For convenience we booked into the Crowne Plaza Park View Wuzhou, which is very close to the hospital.  You can catch a bus there (takes about 15mins), or a cab, they are quite cheap.  A brief warning: when you book (we did so via www.hotels.com who were very good) be careful about the cancellation policy.  They have a range of room types, and each has two prices, one is the nonrefundable price, the other is the refundable price should you need to cancel, which is about US$500 more expensive.  We had a little drama with that policy, but all worked out in the end.

The best way to start the process is to call the dialysis unit and talk through what you need.  Most speak English of a sort.  They then asked you to fax your dates along with a summary of your dialysis details from your unit.  I then got an email from the doctor in charge confirming the booking.  The unit also contacted my unit and asked for two blood tests before proceeding: my HIV and (believe it or not) Syphilis status.  I’m not sure what message that sends.  Still, when the result came back, I was quite pleased to see that it was negative!  As usual, they also require the latest health information about you from your unit, just before you leave.

All together a fiddly process, but if that’s what it takes…  If you would like the phone and fax numbers and email address, contact me at me email address.

The UK and Europe

So we are now travelling direct to London. I have booked into the Diaverum Unit in Forest Hill (one of many sister units to my Diaverum unit in Diamond Valley).  They were very helpful, and I am dialyzing on the same regime as at home (five days per week, three hours per time).

I am also dialyzing in Oxford twice and in Stockholm once.  Both of these are public hospitals, and with our reciprocal Medicare agreement, at no charge, so I even get a small holiday from paying for it (so to speak).  Contact me if you want the details.

Just a hint for those with lots of meds.  For big trips like this (3 weeks in a foreign land) I get my meds sorted into day-by-day bubble packs. I do this for 2 reasons:

1. Each day is measured out for the entire trip (plus a week or so for emergencies), so you won’t run out unexpectedly
2. Those pill boxes can be pretty bulky, and they only last a week, so you have to repack them from the myriad of pill bottle and boxes you also have to carry.

So, off into the distance,  But I will have my trust PC with me, and where possible, I will post notes (probably briefly) of my dialysis and general travel experience.  Back soon…