My poor Hubby

[frankswife]

Well, Frank has had 4 dialysis sessions scheduled and has only actually dialyzed (sp?) ONCE for an hour. His fistula is not ready. Today his neph talked about a catheter in his chest. He is going to call us Monday and let us know what we are going to do after he thinks about it over the weekend. His fistula is about 18 weeks old but he never did the ball squeeze. Nobody told us he had to and I never noticed it on IHD. He is getting so puffy in his face and tummy so I see he really needs dialysis. They took some blood today so we'll see what that shows. From all I read, a catheter is a very very bad thing, I wonder if a graft would be a possibilty. I understand PD is out because of all the scar tissue and hard spots on his tummy from his insulin pump. Please, anyone have any comforting words?

[jeannea]

A catheter is not a "very bad thing." Many people get one when they have to start dialysis. Not all of us get a warning that we need dialysis. I had one for 6 months. There are some infection risks with a catheter. But he can make sure the techs use precautions like masks and sterile gloves and change the dressing properly. The worst part is you can't take a regular shower.

[frankswife]

jeannea, thanks so much for your reply. It just seemed like all I read about was infections and more infections with a catheter. I only wanted something to go right for him JUST ONCE. I apologize for sounding whiny, I know many of you have gone through so much more than he has. Thanks IHD for being here for us!

[Poppylicious]

My Blokey had at least two chest catheters, neither for more than about eight months (his first being an emergency placement so he could begin haemoD quick smart, the second because he refused to have a fistula).  He had no problems with infection, but did have an issue with his blood clotting which blocked them sometimes (but he has sticky blood, so that probably didn't help). 

Also, Blokey never squeezed a ball either ... but he does do a lot of driving and we think the gripping of the steering wheel and having to change the gears may have helped his fistula (he relented in the end) mature.

Hope everything goes well (and soon!) for Frank.

*huggles*

[Sydnee]

Ed started on a catheter, then got a great fistula. But never had a problem with the catheter. In fact when they started using the fistula he missed the catheter. The catheter never hurt he was out quicker when they finished since there was no bleeding. Don't worry it will be fine.

[Cordelia]

I had my catheter for 1.5 years before I got a fistula and it served me very well. It is not such a terrible thing, if you keep the access clean, it should not give grief.  And, I DID shower. But,don't go by me,  please get your doctor's approval before showering.  Everybody is diferent and so is every doctor is different. My problem wasthat the dressing bothered me horribly bad and was rashed all the time. The staff decided I was at higher risk of introducing an infection with wearing a dressing so I did without it, WITH doctor's approval.

The only thing you cannot do, is go swimming.

[MooseMom]

My mother had a catheter for 18 months before she finally got a working fistula.  She was scrupulous about hygiene and never once had a problem with it.  So while a catheter is certainly not the best long-term access, MANY people have one until their fistula gets up and running.  Better to have a catheter than to ruin a fistula.  So please don't feel like having a catheter is some sort of death sentence.  But it IS important to keep the area very clean.

After I had my fistula placed, I asked both my surgeon and my neph if I should be squeezing a ball or doing some sort of exercise to help it mature, and they both give me the same advice..."Just ignore it and use your arm as normal."  I was surprised because I had read on IHD many times that you're supposed to squeeze balls.    

[frankswife]

 :grouphug;to you all. Thank you.

[MightyMike]

I had a catheter for a year the first time I was on dialysis.  I bought one of those shower heads with the hose it worked great.  All you have to do is make sure the center cleans and changes patches at least once or twice a week and applies antibiotic ointment to prevent infection.  Mine did clot a few time but they always managed to get the clot out with some extra heparin.  Look at it this way too having a catheter for access is better then not doing dialysis at all.  Best of luck.

[sullidog]

I had 4 of those things and only 1 out of the 4 got infected and ironically it it was going to come out anyways do to my access being ready. Just make sure who ever puts it in x-ways the area first, my surgeon didn't do this and it caused my heart to beat funny because it was too close to it.

[lmunchkin]

Hubby had a PD cath for 5 years when it got infected. It was not due to lack of cleanliness, it was due to all the antibiotics given him when he got VRE.  Then he got a neck cath for hemo while his fistula was established.  He has a Beautiful Rope now, that is so easy to stick.

God Bless,
lmunchkin

[Whamo]

A fistula is the gold standard for hemodialysis, but a catheter works.  I've had two of them in the last year.  Finally, my second fistula works.  Make sure your husband's blood work is drawn because his potassium level could become dangerous.  He probably needs a new catheter, quick, to get him through a few months while the doctors plan a new fistula.

[natnnnat]

Gregory started dialysis with a catheter too, the first time around.  He says the main thing was it hurt a bit.  His was in his thigh.  Main thing is, a catheter will do the job, and that's pretty important, to get some dialysis in...

[frankswife]

Frank's cath is in his neck. He got it yesterday, and has had 2 good dialysis sessions. However, I realized something last night. Frank CANNOT be left alone. He is prone to severe hypoglycemic episodes, in which he has grand mal seizures. During these episodes he has broken his nose and wrist, blackened his eyes, knocked out teeth and tore his flesh up from head to toe. I can see him very easily ripping that cath out during a seizure. His doctor has extended my FMLA leave so I can care for him, but he wants Frank to go into a nursing home until his fistula matures and the cath can come out. This has been such a nightmare and I wouldn't wish it on my worst enemy. I have arranged to take one more full week off and my company has graciously allowed me to work half days for the remainder of the 12 week leave. Even though it's better than nothing, we are down to about a third of our monthly income and I don't know how we'll manage. I need some huggles!

[jeannea]

I'm so sorry. That does sound like a nightmare. 

I know you don't want to make him go, but is it maybe possible the doc could be right? Maybe a temporary stay in a care facility would help you both.

[lmunchkin]

You definately need some hugs. You are in a difficult place now but just do the best you can. He can't help what has happened to him and he is very very Blessed to have you there for him.  I know you are scared, worried and very tired right now FW.  You just need to take time to settle yourself some. 
If this is a temporary thing the Doc is requesting, then take the time to get yourself rested up for when he comes back home. I had gran-mal seizures when I was much younger.  It is some scary stuff.  I always felt them coming on, but could not do anything to stop it.  There was always an aora just before it happened.  When I came to, I never knew it happened. Mine was due to a mass on my left frontal lobe. Yet the seizure would happen on my right side. Another little marvel of Gods intricate creation. The creation of mankind is so very complicated, but beautifully designed.
I wasnt allowed to drive until they got my levels figured out. That took a year.  I was on Dilantin & Phenobarbitol back then.  Im not sure what is used now. After a little over 2 years, they did another brain scan and the mass was no longer there.

Sorry, I didnt mean to get side tracked.  Just continue to take care of Frank AND  PLEASE TAKE CARE OF YOURSELF! This stuff is never easy, but we make it  the best we can.  God Bless you, you are an Angel!

lmunchkin

[billybags]

frankswife, My heart goes out to you both. I would love to give you a real hug. You will get through this some how. 

[MooseMom]

I wish we could do more for you.   I hope posting here gives you some solace.  It all sounds so overwhelming.