AVF Surgery scheduled & LOTS more going on...UGH

[Shrinkydink]

It has been quite some time since I last posted, so thought it was time for an update!     My AVF surgery is scheduled for August 24 th...I think I am ready for it, just not sure the hubby is ready!     I have been putting a lot of stress on him not to mention that work has too!  UGH  I am soooo ready to    pull all my hair out!!!  I am trying to stay strong for the both of us!!  It is really tough when he is usually the one that lets things just roll off his back like a duck. Just wish these was something I can do to take away the stress and all that he is feeling!  I just wish things were back to 'normal' or whatever that may have been, before he started having all these panic attacks and such!!  I do try to keep my head up and look on the bright side, but that's getting pretty hard these days as the surgery looms closer and closer w/each passing day!!  I just don't need him falling apart knowing that I need him now more than ever!!  Just at a loss and not sure what to do anymore. Any thoughts/opinions on what to to not to do in this situation?  We just celebrated our 11 th anniversay last week, and he has known since day one about my situation. I'm just      beating myself up over what it is causing him to go through!  Thanks for letting me update on what's new these days!!  Have a GREAT week everyone!! 

~~GG~~

[MooseMom]

Your husband is having panic attacks because YOU are about to start dialysis?  Did I understand that right?  What are his specific fears?  Has he talked to you about what panics him?

[lmunchkin]

HAPPY ANNIVERSARY!!!!           

Do you think your husband may be worried about you?  He does love you and maybe he just hates to see you go through this!  Iam constantly worrying about my husband's health, but there is really not a thing he can do to take away my fears!  It is a natural response!  I love him! He loves you! Having fears is nothing unusual, but your feeling guilty is a natural response also!

Look, just relax, and he will feel relaxed.  Enjoy your times together!  All of this will pass soon, with AVF.  You both will settle into a routine and you will see, it is not so bad, please believe me!  I know when this all happend to my husband, I was like in denial for awhile, then faced the reality of Dialysis for the rest of his life!  Not to lie to you, but it was a very hard pill to swallow!  But we both did, out of our love! You guys have been married 11yrs when this took place, we were married 10 when it happened and we had no warning at all! 

Men handle things differently than women, no doubt!  Im sure some of the guys on this site can give you some insight into what he is feeling, but this I do know, he is worried for you!  He probably needs to read some of the posts in here from caregivers to get some perspective on things!  Would you ask him to do that?  He will find people who are in the same shoes as he is and may can help him to cope along the way!

Hope this helps, I hate this for you and him, but dialysis can be done and you can sustain a living on it! Its no picnic, but people here are doing it and doing well! 

Keep us posted and let us know how things are going.  Prayers to you!     

lmunchkin     

[malaka]

I had my AVF surgery at the end of July.  It was no big deal, really.  The scar on the inside of my arm just above my wrist is only about 2" long, and the vascular surgeon said it was that long as he needed to secure vein that was big enough.  Sure, the site itches a little, but within 2 or three weeks, I didn't need to bandage it any more.  As my nephro said, better to have an AV fistula and not need it than to need it and not have one.

While I don't remember the surgery, the anesthesia was IV, not via ventilator, so the recovery was pretty quick. I got an Rx for 30 vicodin tablets (which worried me) but I used only about three.  That painless. 

The only drawback is that I couldn't sleep on my left side as that caused some swelling. 

[Shrinkydink]

It has been six days since my surgery, and all is going GREAT!!  The surgery as stated by malaka was no big deal was just that...NO Big Deal...LOL  I was in/out of sleep during the surgery. The surgeon even at one time had to tell me to quit moving my arm...which of course I didn't realize I was doing...LOL  Spent the first two days w/nausea     and finally got some meds to help with that!!!  Yeah!!  Only took about four pain pills total, so not to much pain to deal with!!   Starting to work with my stress ball, to get back some strength in my right hand!!  All in due time, I am sure!!  Thanks for all the help and info along my journey!!  Wishing everyone a TOTALLY TERRIFIC TUESDAY!!         


~~G~~

[lmunchkin]

Good news, no doubt.  So How is hubby coping?  Look, my husband has this disease.  When it all started, it was like a ton of bricks falling from the sky, but over time, things start to settle down! Now it is just something we have to do.  It doesn't mean that we just have a Rosy life that is all wonderful and all, it means that since we settled down and accepted it, it got alot better!  Does that make sence?

So glad your Surgery went well, Shrinky! Have you weighed your options on modality yet?  We do D. at home on NxStage and so far, it has been the Best decision thus far.  I thought at first that I could never learn it, but so glad I hung in there, cause it is so worth the effort! I just don't see us going back to the center to be Dialysized again.  Hopefully not, unless some unforseen complications that Im not aware of! With this disease, nothing surprises me anymore!  But hey, for right now, all is good in NxStage Land.


lmunchkin   
 

[malaka]

Not everything works out right the first time.  Saw vascular surgeon yesterday who spent lots of time listening to AVF with his stethoscope.  Then, he says to me, I'd like to have you get another ultrasound as I think you either have too much collateral circulation which reduces the pressure in the AVF or there is some sort of blockage.  I'll either have to operate to shut off the collateral circulation vessels or do a balloon angioplasty if its a blockage or narrowing. 

Yippee!  Another procedure!   And the real reason I'm less than happy is that creatinine continues to increase, GFR continues to decline, and since I'm Stage 5 already (at 13 or 15, depending on measurement) I could need dialysis before the shunt is ready.  That would not be fun.  And not helped by the vascular surgeon asking me whether I was already on dialysis. 

On a brighter note, I finally got called for a transplant evaluation which will happen in early October.  That is, at the university hospital, an all day event. 

This is really becoming a full time job.

[macgoose]

Haven't posted much since becoming a member as I have been busy nursing my husband who has terminal lung cancer;  however, my failing kidneys wait for no one or anything.  Have an AVF on  my left arm above the elbow.  This was somewhat surprising as the literature I have been reading indicates that the lower arm is the optimal area.  Doc said ater vein mapping that my veins were too small in my lower arms for  an AVF.  At the site, the AVF is readily palpable, but not readily discernable upward from the site.  Should I be concerned about this?  Has any-body had an above the elbow fistula?  Would love to hear from you concerning this matter.  I am fighting to stave off dialysis as long as possible.  It's difficult to manage Diabetes (insulin dependent), high blood pressure and keep potassium and phosphorus levels low.Am particularly having trouble with keeping potassium low.  HELP

[lmunchkin]

Macgoose, my hubby had a hard time with his potassium and phosphorus too!  But decided long ago, that he just had to be disciplined on not only those 2 things, but on "all things".  Iam so very proud of him, really, because he is doing it and he see's the benefits (if I may say) of following his instructions.  I, too, have had to cut out or hide things from him in regards to eating!  Everything that is bad for him is actually good for me, but my kidneys are functioning! 

Its like everything that is good for a healthy person, is totally opposite for those in kidney failure!  He would definately agree with you on Potassium and phosphorus because it was hard for him to "let go" of the "higher" ingredents of the two in the foods.  Now, it is like a treat that he can have every now and then!  Iam so very pleased with him.  He does deserve all the credit!!!!!

lmunchkin

 

[mcclane]

Macgoose, my hubby had a hard time with his potassium and phosphorus too!  But decided long ago, that he just had to be disciplined on not only those 2 things, but on "all things".  Iam so very proud of him, really, because he is doing it and he see's the benefits (if I may say) of following his instructions.  I, too, have had to cut out or hide things from him in regards to eating!  Everything that is bad for him is actually good for me, but my kidneys are functioning! 

Its like everything that is good for a healthy person, is totally opposite for those in kidney failure!  He would definately agree with you on Potassium and phosphorus because it was hard for him to "let go" of the "higher" ingredents of the two in the foods.  Now, it is like a treat that he can have every now and then!  Iam so very pleased with him.  He does deserve all the credit!!!!!

lmunchkin

 

you are so right.  I've noticed foods that are good for a person (ie. milk, fruits/vegs, nuts) are detrimental for someone with kidney disease.  Aside from the sodium/grease, fast food maybe better for someone with kidney disease

[lmunchkin]

It goes to show just how 'Important" those kidneys are, huh?  They do so much work in the body, that I never realized, until my husband lost them! Sadly, I and others have learned from his experiences!  I am so much more careful about what Iam putting in my body!  He, I quess you could say, has saved me from facing issues down the road.  And trust me, I had some very bad eating habits along with him. Especially portion sizes and 2nd & 3rd helping.  That is sooooo not good for you. 

I hate it that it happened to such an awesome guy.  I would give anything to have  the ole J. back, but reality is, it will not happen.. So I will do everything in my Power to help him in anything he wishes.  I could not have it any other way!!!!

lmunchkin   

[MooseMom]

Haven't posted much since becoming a member as I have been busy nursing my husband who has terminal lung cancer;  however, my failing kidneys wait for no one or anything.  Have an AVF on  my left arm above the elbow.  This was somewhat surprising as the literature I have been reading indicates that the lower arm is the optimal area.  Doc said ater vein mapping that my veins were too small in my lower arms for  an AVF.  At the site, the AVF is readily palpable, but not readily discernable upward from the site.  Should I be concerned about this?  Has any-body had an above the elbow fistula?  Would love to hear from you concerning this matter.  I am fighting to stave off dialysis as long as possible.  It's difficult to manage Diabetes (insulin dependent), high blood pressure and keep potassium and phosphorus levels low.Am particularly having trouble with keeping potassium low.  HELP

Well, there you go.  The lower arm is the optimal area if the veins are big enough.  If they're not, then the lower arm is NOT the optimal area.

I have an upper arm fistula.  The site where the vein and artery are joined is right below the crook in my arm, but the access will be in my upper arm.  I've had my fistula for a year not but have not had to use it yet; like you, I'm fighting to stave off dialysis.  All of this was going on while my mom was dying, so I have an idea of what you must be going through.  I'm so sorry to hear about your husband.

At first, I could feel the bruit mostly at the place where the artery/vein are joined, but as time went on and the fistula matured, I could feel the bruit higher up my arm.  Now I can even feel it in my neck.  So, if your fistula is maturing properly, you will probably start feeling it more and more. 

Having diabetes certainly complicates things; I am not diabetic so can't really offer much advice on that front, but I, too, have to watch phos and potassium.  I have just started taking binders, and I take a LOT of sodium bicarbonate to combat high potassium along with the usual diet watching.  It's not easy, but I've been doing this for 7 years now, so I know some of the tricks of the trade.

[rsudock]

I have had an upper arm fistula for over 10 years...it is connected in the crook of my arm (where elbow bends) just like moosemama!!!

What would you like to know?

xo,
R

[Mr. B 123]

Macgoose,

I also have  my AVF above the bend in my right arm, had the operation in July 2011.  My surgeon said this was the 2nd best place due to vein size at wrist, it is now ready to go when I need it.  Interesting thing when I had the vein mapping was the doc said I had 2 brachial arteries all the way from my shoulder to my hand so don't have to worry about blood supply to hand being starved by the fistulas rerouting the blood.  At least something good in all of this.  Hang in there, and keep on keeping on.

[lmunchkin]

Hubbys is at his wrist and extends about 7" or more, actually almost to his elbow.  I don't rightly think it matters where it is, just having one is whats important, and hopefully doing well for you.

lmunchkin

 

[malaka]

Be happy.  I had AV fistula surgery at the end of July, but learned with ultrasound certainty today that I need a second surgery (probably a balloon angioplasty) to open it up enough to be used for dialysis. No big deal, but
since I'm on the cusp of needing dialysis, I'd just like things to work.

Looking at it, there was no way I was going to stick needles into it without a whole lot of trial and error. So, the sooner I'm back on the operating table, the happier I'll be.

[MooseMom]

Be happy.  I had AV fistula surgery at the end of July, but learned with ultrasound certainty today that I need a second surgery (probably a balloon angioplasty) to open it up enough to be used for dialysis. No big deal, but
since I'm on the cusp of needing dialysis, I'd just like things to work.

Looking at it, there was no way I was going to stick needles into it without a whole lot of trial and error. So, the sooner I'm back on the operating table, the happier I'll be.

You are doing exactly the right thing.  You don't want to have gone through the whole trauma of fistula creation only to find it doesn't work right when you need it to!  Get it up and running NOW!  Any idea when the second surgery will be done?

[macgoose]

Thank you all for your responses.  Each little bit of information adds to my general fund of knowledge and I am appreciative of that.  Some of the information I was seeking relates to the
whether there was ease in accessing the fistula and the longevity of it.  I thought the above the elbow fistula affected only the short distance between the elbow and the shoulder.  I had
no idea that in some circumstances it is palpable in the neck area.  I just read an article on the internet that was downright scary.  It related an increase in deaths of having dialysis only
3 times a week and indicated that having dialysis every other day would decrease the risk of an untimely death---However, they mentioned a cost factor and logistical problems that have
to be considered before any implementation could take place.  Did anybody else read about this??  If so comments and or feedback would be welcome from people who are already on dialysis.  Again thanks to the people who responded about potassium and phosphorus levels.

[lmunchkin]

MacGoose, I did read that and made comments on it with others.  Its sad, but so very true.  Thats one of the main reasons we chose to do home D.

lmunchkin

[malaka]

Just got the word.  Second AV fistula surgery is Friday. "Please check in at 5:30 a.m.".  That'll kill me even if the surgery doesn't!