My bf (32yrs) - A story from the UK

[Artlenock]

My bf had been feeling unwell for some time, quite a bit of last year and then the drama unfolded in April this year when he crash landed. He always avoided going to the GP (typical man!!)

He almost died when his lungs filled with fluid and his heart went into failure, he spent a week in intensive care on  and was at that point told that he had End Stage Renal Failure, cause unknown.

At that point his BP was sky high and had been for a long time but he was unaware of this.  The scary part is that on the night that he collapsed he had been to see an out of hours gp who said 'you have high BP, take these tablets and get some blood tests.' And then sent him home.   

If I had not been with him that evening he would almost certainly have died on our bathroom floor. We have still not decided whether to take action against the out of hours GP.

To cut a long story short, he now has HD three times a week in the local renal unit and works full time.
Just over a week ago he was also diagnosed with fluid around the heart and we are almost at the point where his Mum can donate her kidney having undergone lots of tests, we just hope the problem with his heart doesn't delay things too much!

It is hard for him to maintain a normal way of life with HD taking up 15 hours plus of his week and it cuts into the time we have together, but I love him to bits and I'm amazed at how he has coped with this life changing condition.

Long first post over !

(Worried gf looking for support)

[Poppylicious]

  Artlenock!  This was me three years ago (with a few variations) ... and as disappointing as it sounds, living with ESRF becomes your normal.  But it's a good normal because at least we both still have our men (mine had a transplant last year).  Hope that the heart sorts itself out so that the transplant from his mum can go ahead soon! 

Lovely to 'meet' you.

*huggles*

[Rerun]

Hello Artlenock, and welcome to IHD.  I'm go glad you found us.  So few young people have CKF they the GP's miss us.  I was 24 and diagnosed with an inner ear infections because I was dizzy and throwing up.  WRONG!  GEEZ..... either that or there are just a lot of idiot docs out there.

So glad you are here.  Come here to vent and learn some too.

Rerun, Moderator   

[cassandra]

Welcome to the site Artlenock

take care Cas

[HSM]

Welcome aboard! Me and a few other crazies are also from the UK. I'm from lovely Birmingham, England!

Great that your boyfriend has you, when times get tough, caring people being around makes all the difference, I know from experience.

Hopefully the information available on this forum will be useful to yourself and you boyfriend!

[MommyChick]

 

It is defiantly a hard thing to deal with when your young but I give your BF props for still working along with all else going on. I used to work full time on top of doing dialysis when I first started & it defiantly takes a strong person to be able to keep up like that! Luckily I am now able to stay at home & be a full time mom. I wish you both the Best of Luck & I hope your BF's mom can donate!
Good Luck & God Bless !!
 

[billybags]

Artlenock, Welcome to the site. I am also a carer for my husband and we live in Nottingham. I find more and more young people are getting this disease. It is scary. Thank goodness you were with your boyfriend when he was taken ill. It will not be an easy road, it will alter your life. Did he have a choice of which way he dialysis ed?  Was he given a choice of peritoneal dialysis that you do at home and which is less confining. You can do this over night. Check it out. I hope they sort his fluid problem out. Being so young will give him a good chance of a kidney transplant. I wish you both well.

[lou]

  Lovely to meet you and hope you are doing ok. I am also from the UK (Exeter) also 32 and also had high blood pressure for a long time (which my GP wasn't concerned about) before I finally found myself in hospital one day! Its great that your bfs mum wants to donate and hopefully things will happen quickly for you all. Its all such a huge shock isn't it but just try and stay positive, things will get better. I had my transplant 2 and a half years ago now and its totally transformed my life to the point i feel like a normal 32 year old again (well nearly 

sending lots of love your way
Lou xxxxxxxxxx


ps where abouts in the UK are you from?

[lmunchkin]

Welcome Artle! Hope you find all your answers here. Great group here!

Again welcome & God Bless,
lmunchkin

[Artlenock]

Thanks for the welcome folks!

We are in Northants, he has HD 3 x wk for four hours via a permacath until the transplant (hopefully in about four weeks time !)

Will keep posting re  the transplant experience as I can see others have done, this is a great source of info for other patients who are new to this and quite reassuring, we are not alone 

[chinksnicky]

Welcome to IHD.

[Grumpy-1]

Welcome - I think there is one thing that you need to pay attention too.  Kidney failure doesn't JUST affect one person.  It affects the caregiver too. (you in this case).  It will take it's toll on your health and mental state if you don't pay attention and take care of yourself.  Don't ignore you to care for your BF.   Enough said.  Come back often, share your feelings, your ups your downs, vent rant rave.  We all here have gone through something close to what you might be going through and can listen.  We know what you are feeling.  Don't afraid to let it all out on this site.  We understand.   Grumpy.

[kush1968]

Welcome to the site Artlenock, May God Almighty bless your BF so that he recovers soon. I can well understand the condition you are going through, as my wife is also under HD after a very sad & unfortunate incident, last May. Please take good care of yourself, as you are one of the major life-force to him.

Regards