New Member

[Bren-tam]

Hi my name is Brenda and I'm from Hamilton in Scotland.  I'm 43 years old and started HD at Monklands Hospital 7 weeks ago.  I've not had a good start - after the first week they "blew" my fistula which resulted in my arm looking like I had been attacked with a baseball bat!!  Then I kept "crashing", then I had a fistula-gram which had left me all bruised again! I had a major meltdown last week and actually didn't go for dialysis but been ok since.  I've been considering changing to PD but just can't make up my mind - any help/suggestions would be gratefully received.

[Comeback Kid(ney)]

I am on PD and have been for 3 years and it does have its benefits and drawbacks. The benefits are I am in charge of my situation daily. In essence, it is like running your own business. It also gives more freedom to do what I want to do. The drawback is that it is very tedious work and you have to be very careful with the catheter that it does not get exposed for too long and a peritoneal infection develops. You do not want to experience that. Overall, in my opinion, if you have the discipline, PD is the way to go!

[monrein]

  to IHD Brenda.  Sounds like you've had a very rough start with D.  I hope it improves very soon and also that this site will become as important to you as it has to so many of us.

[lmunchkin]

Hi Brenda and Welcome to IHD. Iam a caregiver to husband who has ESRD. When we first started D. we were so overwhelmed & scared!  He has been on D. now for 7 yrs .  As time goes on, you will learn more, and it will get smoother for you. He is so much better now (and Iam to) than we were when this was thrust upon us.

First, I would like to say, just calm down and relax if at all possible.  Sounds as though this new fistula has been infiltrated and it is somewhat swollen. I know when J got his, it took a couple more going in and blocking vessels off to get it to where it is now. It is working beautifully now.

Things are never easy in the life of a D patient, but it is not the end of the world either. Once things get a little settled down for you, it will become more routine and you will soon be advising others how to do this when they get frustrated and scared!

Just use this time to learn and explore your options. Can you get a transplant? Once they get your fistula established, would you consider NxStage at home?  PD is good too, but since you have a fistula, you can do hemo at home also!  For our situation, we do Nxstage at home, and have really found it to be the best choice for us.  It may or may not be for your situation.

Long story short, Brenda, just take your time in your decisions.  As long as you are being D. and getting cleaned, there is no big hurry!  Just take it moment by moment.  Learn all you can about your health and then go from there.  Its no picnic, but it can be done and done well for you!

Again Welcome and ask anything you like!  We are here for you!

lmunchkin

 

[MooseMom]

LOL, my ex-husband is from Hamilton!  It's a small world after all! Lalalala.

No doubt, you've had a really rough start.  There is no perfect way to receive dialysis, but there are lots of people here who can talk about the choices you can make.  I hope things get much better for you, and soon!

[CebuShan]

       Brenda
Glad you found us! Sorry you are having a rough time to start. I didn't believe it when I was told it would get easier but it has.
Shhh! don't tell anyone!   
Hope to hear from you often.
Retta

[Rerun]

Hi Brenda, and welcome to IHD.  Your start to dialysis sounds like mine.  I did switch to PD and it was a ton better then I got a transplant and did great for 17 years.  I'm back on hemo because I could not do PD any more due to scar tissue.  Darn.  But, I'm doing OK.

I hope you can decide soon.  Stay tuned to IHD.

Rerun, Moderator     

[jbeany]

 

Don't forget that switching back to hemo from PD is always an option if it doesn't work well for you.
The first month or so on HD is rough for pretty much everyone, but it does get better for most. 

jbeany, Moderator

[Ang]

 

[Iwannabean]

  Hello, my name is Steve and I am from Massachusetts.  I have been on D for approximately 6 months, had a fistula before I started dialysis so that went pretty smooth.  I just went to Mass General Hospital recently to the transplant clinic that was a remarkable experience.  I have a lot to live for, but I also have a few gripes, im sure that they will come out on this board eventually.

God Bless,
Iwannabean

[Poppylicious]

  Brenda!  Sorry your introduction to haemoD has been so tough ... hopefully it WILL get better. 

Once they get your fistula established, would you consider NxStage at home?

I'm happy to be corrected but right now I don't think that's an option ... Scotland and England are WAY behind the USA when it comes to NxStage and so it isn't widely available here yet (but it's worth asking about just in case!)

[Bren-tam]

   Thanks everyone for the welcome - I'm really blown away! I've turned into an emotional wreck over the past couple of months - crying at the drop of a hat when I never used to!
I've had a better week this week so I'm still undecided about PD, think I'll give HD another week or two and hopefully I'm through the worst.
Home HD isn't an option for me as I live alone and to be honest I find the needles the biggest hurdle but they've (reluctantly) given me cream to numb my arm so its not so bad now - as long as I put my head in my jumper when they are going in so I don't see them!!!

[Bren-tam]

LOL, my ex-husband is from Hamilton!  It's a small world after all! Lalalala.

No doubt, you've had a really rough start.  There is no perfect way to receive dialysis, but there are lots of people here who can talk about the choices you can make.  I hope things get much better for you, and soon!

It sure is a small world - do you live in Scotland?

[Bajanne]

Welcome to our community, Brenda!  Sorry your iniation went that way.   Glad that you have fround this wonderful place for information, support and encouragament. I live in the British Virgin Islands and the only modality offered here is HD, so that is what I do.  I do hope you get it all sorted out with your fistula (I have a graft myself).  Just keep reading and keep posting.  We need to know how you are doing - not nosey, just family




Bajanne, Moderator

[CebuShan]

  Thanks everyone for the welcome - I'm really blown away! I've turned into an emotional wreck over the past couple of months - crying at the drop of a hat when I never used to!
I've had a better week this week so I'm still undecided about PD, think I'll give HD another week or two and hopefully I'm through the worst.
Home HD isn't an option for me as I live alone and to be honest I find the needles the biggest hurdle but they've (reluctantly) given me cream to numb my arm so its not so bad now - as long as I put my head in my jumper when they are going in so I don't see them!!!

I know how you feel!      I hate to cry and it seemed that was all I was doing at first! Hopefully you are over the worst.
   

[MooseMom]

Brenda, no, I'm not from Scotland; I'm originally from Texas, now in the Chicago area, but I lived in the UK for almost 20 years.

Re:  home hemo in the UK, here is some information I found that might be a good starting point for you if you are interested.  As Poppy said, home hemo is just beginning in the UK, but it IS available at least! 

http://www.kimal.co.uk/download/Making_a_Difference_Summer_2009_NxStage_insert.pdf

[Bren-tam]

MooseMom thank you so much for sending me that information, I'll have a read through it and it'll help me in my decision-making!!

[jontwindsor]

Hey Brenda, sorry to hear about the iffy start - the nurses often curse how bad my fistula was to start - just curious that you said they reluctantly gave you cream - how are you finding the general care oop north? I did a holiday session in Inverness a few months ago which was actually great - but that might have been because I was a guest 

[CebuShan]

I too find it curious that they reluctantly gave you cream?! I was started off with the cream but had such an allergic reaction that I now use a spray. 
Hope things get better for you.   

[Bren-tam]

When I first started I found the needles so painful and I asked for numbing cream but was told that the cream "mushes" the vein and it would be best not to use it, but after they blew my fistula they gave me the cream.  I've since found out that different nurses have different views on this - most say that the cream is ok to use long-term, I, unfortunately, asked the wrong one!!
jontwindsor - the care has been great (there's only 1 nurse I avoid!!), my fellow patients are (mostly) amazing but, although I'm sooooo grateful for the hospital transport, the moaning from the other patients going up there and then coming home is driving me crazy - maybe its because I'm new and just so grateful to be taken there and back whereas the others have been going for years - I dunno but I just hope to God I don't end up like that...

[Ken Shelmerdine]

Bren a very warm welcome to IHD.

Regards HD I would persevere with your fistula. It's common for a new fistula to blow when it is young and not matured yet. It's because the vain in your arm hasn't had time to grow wider and therefor tougher. That's why they start with the lowest gage needles and low pump speeds. At the moment your needling has to be optimum meaning straight through the middle of the vein because  any deviation  could cause the needle to touch the side of the vein and because the vein is so thin it can easily infiltrate causing the bruising you have described. As the fistula slowly toughens up the vein starts to become thicker and more robust. In some cases the needling sites form  scar tissue and this makes needling a lot less painfull because the scar tissue numbs the the site slightly. Eventually in about a year maybe less you should have a good mature fistula even able use thicker needles where you can increase your pump speeds for a better dialysis.

I think most of us on hear have had the fear and anxiety at the thought of a fistula and have despaired by the initial problems you are experiencing at the moment.But don't worry it should turn out fine in the end.

If you are crashing then they have your target weight wrong. If you still pass a lot of urine then question the need to take the amount off that they are currently doing.

 Best of luck

[Dannyboy]

Bren-tam:  Welcome.

I, too started HD in the hospital recently, it is a bit overwhelming and brings all sorts of things to mind.   I have found that it has gotten better with time, as the experienced folks above have pointed out.

Best wishes to you and hope you have opportunity to look around here at IHD in the various areas, lots of good info.
---Dan

[Bren-tam]

Thanks Dannyboy and Ken Helmeting.  I moved on to the largest needles today - I was in a panic but everything turned out absolutely fine, apart from it nipping near the end of my dialysis but they turned the flow down and that stopped it.  I think they've got the weight issues (they've put it up and down a few times) under control now and no more crashing so hopefully its all plain sailing from now on (touch wood).

[willowtreewren]

 

Oh, my! You have had a rough start!

You do need a hug, dear! 

Hopefully things will start to settle out for you, Brenda.

Welcome to IHD!

Aleta

[Bren-tam]

Oh, my! You have had a rough start!

You do need a hug, dear! 

Hopefully things will start to settle out for you, Brenda.

Welcome to IHD!

Thanks for the  its just what I needed
Aleta