about to book fistula surgery and the issue of tiredness

[bluesgirl]

it's rather late here in Sweden and I've had a long day, so pardon any typos or other stupidities.
I got a phonecall today from my kidney co-ordinator that they want to book an appointment from me in about 3 weeks time to make a fistula. Thank goodness I think it's going to be an upper-arm one, partly because I'm realtively young (turened 30 november 20109 and DO NOT want my lower arm destroyed by lumps and bumps, at least with an upper-arm one you can hide it under the sleeves even if you wear a t-shirt, or so I imagine? I'm finding it very hard though, and even though I've been told that they were going to try to book surgery before the summer it still feels so soon! I don't feel ready! I guess it's partly the whole denial about the fact that I WILL have to go to dialysis, even though my co-ordinator keepsjnh 5but frankly also the part of not wanting those bumps and lumps or a raised vein, even in my upper arm...
Also what is frightening me is that while my co-ordinator says that most people feel much more energetic after starting HD, I've also heard people say that dialysis makes you extremely tired. Any thoughts on the issue of tiredness, and please will you be here for me in the next few weeks before, I guess surgery goes forth...

[jbeany]

Yup, there's always someone on here with a willing ear.

What they don't tell you is that many (but not all) people do feel better after they start D - but not for the first few months.  It takes a while for your body to adjust, for them to figure out a proper weight and the right combo of treatment time and meds.  The first while, you are going to wonder why you ever thought it was a good idea.  Keep slogging through, it does get better.

For a lot of people, even after the first few months, the days they have D can leave them fatigued.  I got to the point where I could stay up most of the day after a 6 am D session, but don't expect to see after dinner for long.  The days I didn't have D, though, were far better.  Switching to longer runs or more frequent home D can help with that.  I did NxStage for a while, and that was even better than regular hemo - plus I could schedule it for the evening, so even if I was tired after, I could go straight to bed.  It's not an option in Sweden, yet, I don't think, but standard home hemo should be.

In theory, you can hide the scars under short sleeves.  The reality is that the fashion gods have deemed cap sleeves or sleeveless shirts the new IN thing.  I have a hard time finding half-sleeve length for dress clothes when I really don't want the scar to show.  It can be done, but you better like to shop!

[willowtreewren]

My husband felt better IMMEDIATELY when he started dialysis. And then when we came home with NxStage he felt even better. He said that he actually felt 10 years younger!

I understand your concern over having a lower arm fistula. Something to consider, though, is that if that one fails, they cannot then move to the lower arm. They CAN move from the lower arm to the upper arm.

Have the fistula created is not a big thing. At least it wasn't for my husband. Hoping yours goes as well.

Aleta

[bluesgirl]

thank you! I should have explained that another of the factors when choosing to have an upper-arm fistula is the fast that I have spina bifida and have wheelchair, and the way I drive, if I got a lower-arm fistula, the wheel would probably lay right across the fistula site and in the sommer if you do wear a shorter sleeve I get really dirty from dust and other things on my lower arms, so the doc actually agreed that maybe it would be more prone to infection ad injury if located on the lower arm.

[Ang]

tiredness is a product of dialysis,i myself had dialysis for 5 hours , three times a week,for those who have it longer, probably feel more energetic.

it will take you time to get used to the whole idea of doing dialysis,so baby steps is the way to ,even in your 30s
good luck with your journey

[KarenInWA]

I just had my fistula placed last night - just above my elbow.  Reason for it being there and not lower is due to the fact that I have a circulation problem called Reynaud's, and having the fistula in the lower arm can make that worse.  I certainly don't want that!  Now I'm going back in to the hospital tomorrow to get a neck cath so I can start dialysis Thurs or Fri.  I keep telling myself that hey, at least I get to catch up on my reading.  I have to look at some kind of bright side, or else I'll go crazy!

KarenInWA

[Bruno]

Lower arm is better because its easier to get at with your right arm and we all have to be very very careful making sure we don't injure it down there. Mine is over a year old and I have no trouble wearing short sleeved shirts (Sydney is a sunny place) because the fistula and access sites a barely noticeable.
Dialysis is terrific, you will feel better than you have in ages and steadily improve as they sort out the best treatment for you. Try and go for dialysis at home, it will give you more freedom.
My best of good wishes for a really successful outcome for you.

[bluesgirl]

  Everyone! Have just been to an appointment with my kidney-nurse and she said that the docs had said that actually my upper-arms looked better and that the vessels in my lower arms looked a bit too small ( I think that was the reason) so they too thought that upper-arm would work best. I  feel a bit ashamed of my self but for a mpment there I went "yaaah lower-arms for not being the best choice"

Well anyways, she showed me where they ar most likely going to place the fistula and I have to say that for the moment I feel a bit calmer as it will probably be possible to cover the actual "bump" with a t-shirt sleeve. The scar I don't mind much, it will fade, but it's getting a really prominent bump or other lumps and bumps that worries me.

I'm aiming for learning to stick myself and home-dialysis, but I have a parrot so I'm not sure the hygene-people will let me bring a machine home...
Sidenote: Apparently nxstage machines now exist in Sweden, but as far as availability I think it's poor and I'm not sure that a machine would be government subsidised the way the machines they use now would be. I'll like a nxstage becuase then you could take it with you places, but it's all depending on the cost you have to pay for one, since I live on about 2040 dollars a month, with a rent of 1225 and 8 cats and a bird to feed and take care of.

[Poppylicious]

My blokey (husband) refused to have a fistula for a year and a half.  He had a chest cath and then he tried PD.  It wasn't until the PD failed that he relented and allowed them to put a fistula in. 

His main worries were the pain at dialysis sessions (he'd seen a lot of people with fistulas experience a lot of pain at dialysis) and the lumpy-ness that was bound to occur.  He's never experienced the pain that he was so worried about and I actually think that now he's getting a little lumpy-bump (he's been on haemoD for about three months now) he's quite proud of it.

I hope that your surgery goes well.  It sounds like you have a lot to contend with!  Good luck!

 

[bluesgirl]

thank you! I was "investigated" ( can't think of the word now  ) to see if I could have the option of PD, but since I've had so many surgeries and a few infections before in my stomach (surgery wise I probably have about 25 scars on my body and have been though 35 or so operations so far in my life), I have too many ligations (I think that is the word.) Thus PD is most likely not a good choice for me, so it will have to be HD.
But I feel abit calmer and better, at least temprarily right now, and surgery has been booked about 3 weeks from now.

:bump;My blokey (husband) refused to have a fistula for a year and a half.  He had a chest cath and then he tried PD.  It wasn't until the PD failed that he relented and allowed them to put a fistula in. 

His main worries were the pain at dialysis sessions (he'd seen a lot of people with fistulas experience a lot of pain at dialysis) and the lumpy-ness that was bound to occur.  He's never experienced the pain that he was so worried about and I actually think that now he's getting a little lumpy-bump (he's been on haemoD for about three months now) he's quite proud of it.

I hope that your surgery goes well.  It sounds like you have a lot to contend with!  Good luck!

 

[Lillupie]

you know i have spent a total of 4 months of my dailysis career on HD. You do and can feel better on HD dialysis as an option. I will tell you that some of it has to do with the diet. Try the best you can to follow the fluid restrictions as much as possible. I know its hard in the summer, as well as the salt intake, and phos.
 I believe you will feel the best when you follow the diet. THe less fluid they have to take off the easier it is on your body. I have see it where they have had to take off 20lbs of fluid off of a person! Even 4lbs, I think is too much. So dont let them take off more then 1kilo at a time. OTherwise your body will feel like a rollercoaster ride.
 I personally felt pretty good on hemo. I just couldnt stand the lifestyle or not being able to eat potatos and other foods, it is do able. I had fun with the people there, and yes I did catch up on reading, talking on the phone(if your center lets you), watching movies on my laptop, sleeping, doing crossword puzzles.

Just try to stick to the diet as much as possible, and get good sleep the night before.

Let us know how you are doing when you do start,

Lisa

[Shaymon]

Hello Bluesgirl,

Like you I didn't want a 'mountain range' (the Andes if you pardon the pun) running down my forearm and I expressed this to the surgeon when they did my fistula in February of this year. He says that they cannot 'bury' it too deep because it causes problems during needling and make access difficult. But they also said that if it does get too big they can operate to make it a bit smaller should the need arise. Not the best answer in the world but you need to stick up for yourself and tell 'them what you want'. If they don't agree then you will all have to compromise after all its your body not theirs. Just make sure you get the best for you and not what is easiest for the unit.

I have a constant battle against tiredness (hemo is at 10.4 and falling) but is part of the illness. Like you I also have commitments that I have to make each day, job, home and at least 3 times a week I do a 45 mile round trip to take the children to school and pick them up. My wife works some weekend too as well as being on call at the hospital, so life must go on. OOOh and I have 2 cats too. So I look after the house,the cats, children, shopping, cooking etc. This is my main reason for not taking any 'crap (for want of a better word)' from the renal team. They have tried to change my medication on several occasions much to my dismay and it has always been to my detriment so now I have convinced them that I'm best off where we started so that I can continue with my life.

I know that it is only a matter of time before I start on the Big D, but I'm gonna say when, and it will be on my terms so that life can continue. You don't live to dialise you dialise to live... big difference and you should remember that when you need to make decisions.

I hope this helps and keep looking here for info there's lots of it............... and good stuff too.

Remember you are in charge of you, your treatment and your body. Its yours not theirs.

All the best, and let me know how you get on please

Your very obstenant member of IHD

Shaymon

[Bruno]

Great post, Lisa and great advice, you are spot on.

[bluesgirl]

Getting my fistula done tomorrow. Still not liking the idea and have cried a fair bit today, but hoping it will be all right in the end. Rather too tired at the moment to think actully...Fingers crossed for me tomorrow though, if you please.

[Sax-O-Trix]

Good luck tomorrow  

[woodsman]

Piece of cake, its really pretty simple in and out.... 

[bluesgirl]

Piece of cake, its really pretty simple in and out.... 

Thanks, I know. It mostly the idea of getting a fistula to "ruin " my arm that makes me sad.

[galvo]

Your arm will not be 'ruined'! You will have a badge of courage. Tell us how it went

[bluesgirl]

hey all. Thought I
d give you an update. Went in for surgery today at 7 and got out at about 3 pm ( between that was a whole lot of waiting and resting up and waiting to see the doctor to be discharged.) I think I'm just about as happ as I'm going to be with the placement and stuff of the fistula (although I do reserve the right the change my mind and whine about it in the future )
It's above my elbow and I'm Not sure where the sticking points will be , but where I can currently feel it the most is about 2 inches or so from the "backside" ( or front depending on how you see it) of my elbow. the only think to whine about ( see  ) is that it's more towards the uppside or outside of the arm, but I'm hoping it will be just fine.
Medically it was given the best grade possible with the progsosis being good ( out of good, quite good and bad) so proud of myself  .
It's hurting a bit, but not in a "omg I'm lossing my arm" kind of way , more in a " damn it I worked out and overdid it" kind of way, and they say that that might last for 4-5 days. The rest of my body is feelin much the same for some reason only slightly less, but I guess that comes from the operation gurney,hospital bed and general exhaustion after being tense and trying to heal. I've slept a lot today and tonight , probably mostly for that same reason.
I can already feel the fistula under the skin in certain places, but have also been equiped with a stethoscope. That's one of the things that slightly worried me now when it comes to lumps and bumps adn visibility of the fistula, is that it's so shallow that I can already feel it ( I know, I'm being a vain sucker but I can't help it I guess it's my way with dealing, or not wanting to deal with CKD. But I think I'll try to put those worried aside 'till they start using it or I see how much it grows.)
In medical talk, it apparently currently has a flow-rate of 250 ml/ hour, is that bad, good or in between?
So, all in all, thourouly knackered  (as proved by the fact that it can't remeber how to spell thourouly ) but causiously optimistic, today at least...

[Willis]

Glad it went well for you. I had my fistula surgery last month and was exercising again the next day. Of course everyone thought I was nuts... 

Now my fistula was intended as a "backup" and I had a PD catheter inserted two days ago. This was much worse than the fistula surgery! It will probably be another week before I can really do anything strenuous. But even so, now on the 2nd day, I don't need anymore of the heavy pain meds. I could probably go back to work tomorrow but my boss said if I show up for work he was going to take me home and tie me to the bed. 

 

[Stoday]

In medical talk, it apparently currently has a flow-rate of 250 ml/ hour, is that bad, good or in between?

Before your fistula the flow rate would have been around 100 ml/hr at rest.

250 ml/hr is too low for dialysis — the machine is generally set to take 300/400 ml/hr or so.

Your fistula will develop, the vein will increase in size because it has a high pressure connection direct to your artery. When developed, your flow rate should be at least 1000 ml/hr and probably around 1500 ml/hr.

[boswife]

Im so glad and happy that this part is done    I wrote ya yesterday too to send you best wishes but hit something and lost it and was too pooped to doo it again...    Your going to do just fine.  I sure wish i had this place when hubby was just getting going with this all.  I just followed along being the yes man/woman, and thank GOODNESS his all went well and he has a great fistula.................. of which im doing my darnedest to keep that way     Get some rest even if ya dont feel much like it  

[galvo]

Good news, bluesgirl!

[bluesgirl]

In medical talk, it apparently currently has a flow-rate of 250 ml/ hour, is that bad, good or in between?

Before your fistula the flow rate would have been around 100 ml/hr at rest.

250 ml/hr is too low for dialysis — the machine is generally set to take 300/400 ml/hr or so.

Your fistula will develop, the vein will increase in size because it has a high pressure connection direct to your artery. When developed, your flow rate should be at least 1000 ml/hr and probably around 1500 ml/hr.

My papersays I have flowrate of 250 ml a MINUTE  , but I guess that's what you meant?

[bluesgirl]

everything going well so farr, the swirring is going strong. This is the first day when I don't really have that much pain in my arm. I do however have one HELL of a bruise, from halfway up my upper-arm down to my wrist and about 10 cm across in most places...It didn't start out too bad, but has spread, but at least it's not as sore as it was yesterday, so I'm hoping it's going in the right direcion. What with drivin my wheechair, carrying things at home, having supporte the weight of my body on my arms when I go in and out of the chair X amout of times a day and caring for 8 cats, I thinking perhaps I over did it a bit and that is why the bruise had grown, I aam however seeing my kidney-nurse on tuesday and like I said the swirring in the fistula is still going strong and can actually be felt on the arm, so hopefully I'm ok. Looking forward to loosing the bandages eventually since I'm probably a bit allergic to the glue ore something in them (am allergic to latex) and they are staring to itch.
BTW does anyone know if it's ok to massage the arm a bit, to get some swelling down and relieve some pain? Have been frightened to do so since I have told be the medical staff to for instance not sleep on my arm, and wear loose-fitting clothes+