Last week I received this moving email from Emily, describing how she and Edward (not their real names) felt when Edward eventually began dialysis.  I am sure it will strike a chord with BigD-ers and their partners/carers everywhere.  She also had lots of questions, like we all did when we started but were too embarrassed or didn’t know who to ask.

I think Emily’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 Emily and my partner Edward has just started the BigD .  Last week, a beautiful nurse at the Austin Hospital, I think her name is Janice referred me onto you and said that you had a very positive outlook and it might be good for to get in contact with you and have a chat.

Edward and I are both 36 years old we have been seeing each other for nearly a year, we have taken the next step and I recently just moved in with him a couple of months ago.  Edward discovered he had Chronic Kidney failure around this time last year when he nearly died because being a bloke he thought he just had a really bad flu  They discovered that Edward was born with only one kidney and that kidney has failed on him.

So when I started seeing him I knew that he had kidney problems and he was doing everything he could to keep off the Big D.  Many would probably say that he had a year of grace while he ran away from his illness. To his defence he didn’t want to be defeated and I tried my hardest without really knowing much about his condition to support him.  So I did everything I could to find information about his illness and find out holistic approaches to help him to keep off the “D”, I even looked up things to see if we could have any normality in our lives if he did have to go onto a machine and also about transplantation.  I suppose I wanted to make sure I could find the positives in something so negative to be a better support for him.

I had noticed over the last couple of months how increasingly tired he became and urged him to see a doctor but he didn’t want to go because he was afraid that they would put him on dialysis and I believe that for him it meant he was no longer in control of his body or illness anymore.  He would be defeated.  A couple of weeks ago he had a stress test and others on his heart and discovered that he had an enlarged heart.  

We got a the phone call Friday night from the doctor at Austin before we were going out that night and he said that Edward needed to start dialysis the following Monday.  After the call we both broke down and cried, the inevitable had happened and our lives were not going to be the same.  We had both been beaten and because of his heart did this mean he wouldn’t be able to get a transplant?  But I wasn’t going to give up, all that weekend I looked into as many websites as I possibly could to see if our lives would be altered too much and if we could do all the things we had planned as a couple.

• Could we still go to New York in January?
• What about children?
• Will he die?
• How long does it take to receive a transplant when you don’t have a living donor?
• What about other holidays?
• Could I give him one of mine?
• Will he get sicker?
• What does our future look like now?
• How will he run his business if he is on Dialysis 3 times a week? (Edward has a successful Sheet Metal business and has at least 12 people working for him)
• And most selfishly on my behalf, do I need to give up my dreams and hopes for my life and future to support him?

That Monday I went into hospital with him as support and the reality hit me so hard that it was like a massive kick in the guts.  Seeing the machine and watching his blood being filtered, listening to the dietician and the nurses talk to us about the reality of our lives and lifestyle now and seeing the other patients sucked out any life of hope I conjured up for us as a couple and him and me individually.  

Edward had told me that weekend that he would understand if I wanted to leave him because life was going to get hard for us now, but I reassured him that we were doing this together.  I told him that in every relationship there are times when we need to be each other’s strength when the other isn’t feeling strong enough and I knew what I was getting into when we started seeing each other so I wasn’t going anywhere.  But after Monday I wanted to run away and hide, I broke down in the hospital in front of the nurses and Edward. I just didn’t believe I was strong enough to cope because I had lost all hope.  How weak am I?  I’m supposed to be Edward’s support and here I am sulking like a baby!!!  But where was I going to run? I love him and I wasn’t going anywhere.

Edward is very lucky at the moment that he is still going to the toilet so his not on fluid restrictions.  I think he is down and very angry.  Although he only started the “D” I can tell he is getting edgy already sitting there doing nothing for 4.5 hours 3 x a week.  He tries to bring his work in with him but he finds it difficult to do in there.

Greg, I want to support him the best way I can but just need some advice on what to expect. I think he needs a friend or someone who is going through the same thing to talk to.  Are there support groups or social groups?  How did you and your wife cope?  Did you find it an issue running a business with your illness, how did you find the positives?  I’m ok now with everything but I just want to know the best way to support him and want to know the emotional ride he may feel as we go through this together.

I hope I am not asking too much of you and haven’t bombarded you with to much info but will look forwarded to hearing from you.

Thank you also with positivity and encouragement that you give in your blogs, you are a real blessing to so many people including me.

Regards, Emily

My response to Emily included answers to her questions:

• Could we still go to New York in January?  It is still possible, but it will be more expensive.  There are no holidays from dialysis.  One treatment can cost $600 or more in the US (and parts of Europe).  You will need to book ahead.  The best approach is to arrange for BigD through your dialysis unit.  They talk the same language…
• What about children?No problem there, but start early.
• Will he die?  Not from dialysis or kidney failure.  Most BigD club members eventually die from heart failure. This is because once you stop urinating, the body has to hold large amounts of fluid between dialysis sessions.  This puts a lot of strain on the heart, and it eventually becomes weak (unless you manage your fluid intake, among other things).
• How long does it take to receive a transplant when you don’t have a living donor? A typical transplant workup takes 12 -18 months.  There is a lot involved: compatibility testing, psychologist interviews, a myriad of blood tests over quite a long period, attending briefings and training, etc.
• What about other holidays? No problem with holidays.  There is a book available in most units that lists all Australian dialysis units, with indications of availability, contact numbers, etc.  Start there and work with your unit staff to arrange the dialysis.
• Could I give him one of mine? If you are compatible.  You need to be tested.  Talk about it with you unit staff.  They work closely with the transplant team.
• Will he get sicker? As long as he continues with dialysis, there is no reason why he should get sicker (not counting all the usual other threats to life that bump into us each day).
• What does our future look like now? Your future is what you make it.  Edward’s kidneys have failed.  That’s the problem.  Luckily dialysis is there to help you get your life back.  Things will be different and a little frustrating, but its better than the alternative
• How will he run his business if he is on Dialysis 3 times a week? (Edward has a successful Sheet Metal business and has at least 12 people working for him). Like all businesses, Edward will have to rely on good support staff.  I have been running a business while on BigD for 16 years.  Things can continue without me because I am always in phone contact and I have some great people to help.  Also, because it was my business, I didn’t have any difficulty getting away to dialysis.  This is not always the case if you work for others.
• And most selfishly on my behalf, do I need to give up my dreams and hopes for my life and future to support him? That’s a tough question.  You will definitely have to put yourself second some times.  If Edward (and you) eventually decides to dialyse at home, your time will not be your own much more than if he stays at a unit.  I know of marriages that have broken up and of others that have become stronger.  There are ups and downs and constraints and frustrations, just like there are for healthy people.  But if your dreams are based around both of you, rather than just you, you have a pretty good chance.

As you can see there is a lot to say, and we have only just started.  I’ll keep you posted on Emily and Edward’s progress.  Comments most welcome.