Fistula or no fistula

[deniferfer]

I don't know what to do. Yesterday at dialysis my catheter started to act up. It wasn't allowing then to draw anything out or put anything in. The nurses put in some medication and after I sat for a hour it worked again. This is the second time this has happened. They say one of 2 things have to be done. 1 to replace the catheter or 2 get a fistula. To say the least I'm scared to get a fistula. My veins are small and blow with small IVs.  On top of that I have very low blood pressure.  I have been told that getting a fistula the better way to do hemo but I have also read horror stories on what can go wrong with them. I just need some advice and if anyone has been in the same boat I am with small veins and/or low blood pressure.   

[obsidianom]

I don't know what to do. Yesterday at dialysis my catheter started to act up. It wasn't allowing then to draw anything out or put anything in. The nurses put in some medication and after I sat for a hour it worked again. This is the second time this has happened. They say one of 2 things have to be done. 1 to replace the catheter or 2 get a fistula. To say the least I'm scared to get a fistula. My veins are small and blow with small IVs.  On top of that I have very low blood pressure.  I have been told that getting a fistula the better way to do hemo but I have also read horror stories on what can go wrong with them. I just need some advice and if anyone has been in the same boat I am with small veins and/or low blood pressure.   

My wife has very tiny veins. She is tiny all over . The first vascular surgeon didnt think he could do a fistula . So we went to a large teaching hospital to get a top notch vascular surgeon. He did a fistula surgery on her right arm as the veins were way too small on the left. He was able to do a lower arm radio cephalic fistula which is the best way to go. He had to enlarge it 6 monthe later but it works beautifully and everyone admires it. So yes it can be done  on small veins. She always had trouble getting blood drawn and had to have small butterflies .
You really need a fistula as a catheter will eventually cause an infection ( my wife had an infection that almost killed her with a catheter). and catheters can and will clot up in time . it sounds like yours is. It will take months for a fistula to mature , so do it SOON. It is by far the best way to go. WE have no trouble using it at home 5 days per week. Catheters are not a good way to do long term dialysis. 

[MooseMom]

My mother had to start dialysis after having an operation to repair an aortic aneurysm.  She started on an emergency basis and had a catheter placed.  Her dialysis unit was affiliated with a vascular clinic, and unfortunately they did not do a good job placing a fistula.  One of her dialysis nurses broke ranks and whispered to her that the vascular clinic was terrible and that she should find another surgeon.

My mom ended up going to one of the top practices in the Texas Medical Center in Houston, and the surgeon created an upper arm fistula that worked brilliantly.  My mother was a small woman, but this surgeon had no problem creating that fistula.  He was so proud of it that he took a photo of it.  It is one of those circumstances where the skill of the surgeon makes all the difference in the world.

My mother had a catheter for 18 months and was very lucky to have avoided infection.

Let's face it...there are horror stories that accompany any and all kinds of accesses.  I hope you will discover what will work the best for you.   

[Charlie B53]

Being absolutely paranoid of needles, I have aproblem with even 'normal' blood draws.  They usually use one of the little 'butterflies'  and sometimes that takes a couple of pokes.

The idea of going to hemo with those needles almost makes me pass out.

You all are of a much tougher stuff than I.

I opted for PD, and started last May.  Almost at my first year under my belt and so glad it hasn't been a problem, yet.  But I am keeping my fingers crossed and have to wonder if the 'new' patients are given the choice of PD vs Hemo?

I suspect a lot is decided by the Dr, which may not always be what the patient would choose if informed.

At home PD is not at all difficult, and I would far more prefer to take care of myself at home than have to go to a center 3 times a week.

[obsidianom]

Being absolutely paranoid of needles, I have aproblem with even 'normal' blood draws.  They usually use one of the little 'butterflies'  and sometimes that takes a couple of pokes.

The idea of going to hemo with those needles almost makes me pass out.

You all are of a much tougher stuff than I.

I opted for PD, and started last May.  Almost at my first year under my belt and so glad it hasn't been a problem, yet.  But I am keeping my fingers crossed and have to wonder if the 'new' patients are given the choice of PD vs Hemo?

I suspect a lot is decided by the Dr, which may not always be what the patient would choose if informed.

At home PD is not at all difficult, and I would far more prefer to take care of myself at home than have to go to a center 3 times a week.

Home hemo works well if you like to take care of yourself.
PD doesnt work for everyone, and probably wont last for more than a few years on any patient as the peritoneum eventually develops problems. It is good while it lasts. 

[cassandra]

Hi Denifer, have you had vein mapping done? And how low is your BP? Have you spoken with a vasc surgeon yet?
I hope you find a solution soon.

Nb I personally think you best opt for a fistula, and find a good vasc surgeon (most erf people have crappy veins anyway (so I was told      )
, then learn to needle yourself as quickly as poss.

Good luck, Cas

[jeannea]

If it would help you, get more than one opinion. You can talk to more than one vascular surgeon for recommendations. (Of course this is easier if you're near a bigger city.) but even if you get a fistula it takes time until it is ready to use. You may have to bite the bullet and replace the catheter.

[Charlie B53]

Home hemo works well if you like to take care of yourself.
PD doesnt work for everyone, and probably wont last for more than a few years on any patient as the peritoneum eventually develops problems. It is good while it lasts.

You know you just ruined my day, almost.  The rain keeping out of the yard may have more to do with that.

Honestly, now I am a bit worried.  How long can I stay on PD?

So far, only a year, my labs are good.  No infection.

And I really do have a serious problem just thinking about 15 ga needles.  (shiver).

[cassandra]

Dear Charlie, stop shivering. There's quite some people who stay for quite some time on PD. You are probably told that before. Mine lasted 5+ years, which apparently was average, but there's people on this site who do it an awful lot longer than that, so as usual: one's lucky, or one's not.

'Enjoy' while it lasts.

Love, Cas

[galvo]

Q. Fistula or no fistula?   

A. Fistula.

Obsidianom said it all1

[obsidianom]

Home hemo works well if you like to take care of yourself.
PD doesnt work for everyone, and probably wont last for more than a few years on any patient as the peritoneum eventually develops problems. It is good while it lasts.

You know you just ruined my day, almost.  The rain keeping out of the yard may have more to do with that.

Honestly, now I am a bit worried.  How long can I stay on PD?

So far, only a year, my labs are good.  No infection.

And I really do have a serious problem just thinking about 15 ga needles.  (shiver).

I agree you should enjoy it while it lasts , which could be 5 years or more.
However sometime in the far distant (hopefully ) future you will probably need to get a fistula and hemo. SO------ here is some help.
I used to be afraid of needles as a kid. It wasnt until I went to medical school and had to practice with needles that i became comfortable with them on patients and MYSELF. I used to practice on myself which desensitised me to them . Now I even can do surgery on myself with local anesthesia. I have done numerous small procedures on myself over the years.
So my advice is to get some SMALL needles from your clinic and practice . Just start with 27 guage or 25 guage and inject some saline. It works. After awhile you can "graduate " to larger needles. You have plenty of time to do it now.
I have to inject myself twice a week with medication (in the butt) and can easily do it . It becomes easier over time , beleive me.

[Simon Dog]

Now I even can do surgery on myself with local anesthesia. I have done numerous small procedures on myself over the years.

I think the Russian doctor who took out his own appendix has you beat.

[Charlie B53]

High School Biology Lab, I about fainted just looking at that little poker we were supposed to finger stick with so we could type our own blood.  I had the cold sweats, tunnel vision, hearing the roaring surf.  Sweet little thang next to me saw what was going on and said, "Here, have a drop of mine, I got plenty!"  I thought about marrying her.  She saved me.

Went diabetic about Nov, so I've had to start sticking my finger.

They gave me Lantus a couple of months ago so I have to draw it up and belly stick ever evening.

Couple weeks ago I graduated to fast acting.  Now sticking some in with every meal/snack.

Finding a vein?   I never would have made a good druggie.   I probably would have passed out before I could press the plunger.

I guess we learn to adapt and do what is necessary.  But I'll put it off as long as possible first.

I'm praying they fully develop the bone marrow switch, then transplant a month or three later after full recovery from the DNA switch.  Already started to talk to my Son about it.

[deniferfer]

Charlie, I did PD for 14 years so if you take good care of it and follow the rules you'll be OK.

Cassandra, I'm still waiting on the dr to send me to the surgeon. They got the line working again but I know that its only a quick fix.

I want to thank everyone one out for giving me questions to ask and now I know I also need to find a VERY good vasc surgeon. I a bit worried about the one in my area. He came to one of my support group meetings and was bragging on how fast he can put in a fistula. IDK if that is good or bad. I want it done and done right. I don't care how long it takes! Next question,  what exactly does it mean for the fistula to mature and how long does that take? Also has anyone had a graft and how well does that work?

Sorry I can't remembered who asked but my BP starts at 100 when I go in and can drop as low as the 70s once I'm on D.

[obsidianom]

Charlie, I did PD for 14 years so if you take good care of it and follow the rules you'll be OK.

Cassandra, I'm still waiting on the dr to send me to the surgeon. They got the line working again but I know that its only a quick fix.

I want to thank everyone one out for giving me questions to ask and now I know I also need to find a VERY good vasc surgeon. I a bit worried about the one in my area. He came to one of my support group meetings and was bragging on how fast he can put in a fistula. IDK if that is good or bad. I want it done and done right. I don't care how long it takes! Next question,  what exactly does it mean for the fistula to mature and how long does that take? Also has anyone had a graft and how well does that work?

Sorry I can't remembered who asked but my BP starts at 100 when I go in and can drop as low as the 70s once I'm on D.

Any doctor who brags about speed is an idiot with a HUGE ego. I wouldnt let him touch me or my wife. (he probably does the same speed technique in bed , slam bam , no thank you mam).
Maturation of the fistula means it has to enlarge. When formed it is a relatively small vein connected to a medium size artery. The vein has to enlarge over time and the walls thicken,  to handle the large volume of blood for dialysis. It often starts at a diameter of say only 3 mm but can go to over 10 to 15 mm later. The extra blood from the artery going into the vein actually causes the vein to grow larger . (it is called Wolfs law. Anantomy will change to handle the load. Like muscles getting larger as they are used.) It can take form 2 months to 6 months or longer . My wife needed 6 months. Her fistula is huge now and works great.
A graft is nowhere as good. It tends to break down and clot a lot . Think about it, a fistula is live tissue that can heal after each stick. It can change constantly as needed. A graft is foreign tissue that cannot heal and can be damaged by using it. Most grafts need to be repalced often while a good fistula can last yhears or even for life.Fistulas are always better if they can be formed and mature. If not then a graft is the second choice.

[cdwbrooklyn]

Any doctor who brags about speed is an idiot with a HUGE ego. I wouldnt let him touch me or my wife. (he probably does the same speed technique in bed , slam bam , no thank you mam). Maturation of the fistula means it has to enlarge. When formed it is a relatively small vein connected to a medium size artery. The vein has to enlarge over time and the walls thicken,  to handle the large volume of blood for dialysis. It often starts at a diameter of say only 3 mm but can go to over 10 to 15 mm later. The extra blood from the artery going into the vein actually causes the vein to grow larger . (it is called Wolfs law. Anantomy will change to handle the load. Like muscles getting larger as they are used.) It can take form 2 months to 6 months or longer . My wife needed 6 months. Her fistula is huge now and works great.
A graft is nowhere as good. It tends to break down and clot a lot . Think about it, a fistula is live tissue that can heal after each stick. It can change constantly as needed. A graft is foreign tissue that cannot heal and can be damaged by using it. Most grafts need to be repalced often while a good fistula can last yhears or even for life.Fistulas are always better if they can be formed and mature. If not then a graft is the second choice.
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[deniferfer]

obsidianom you crack me up!! Clearly this guy isn't good at any job he does.  But thank you! Your making a lot of sense and really helping me to understand and make a better choice. I have so much to think about and learn. I am leaning towards getting at fistula and need to get that done soon. At the same time I'm getting on the transplant list and have heard rumors that starting in Jan 2015 it won't matter how long you have been on the list but how long you have done D. So that would most likely bump me to the top cuz I have been doing D now 16 years. So I have a lot on my plate to think about. Really my head is just spinning!

[Ninanna]

I don't think people already on the list will lose time if you haven't been doing D while you waited. However people will get back credit for the number of years they have been doing D prior to being listed. The new rules also try to match the top kidneys with the top 20% of healthiest patients based on how long they are expected to live (to prevent a kidney from a 16 year old going into someone who is 75 with heart disease and diabetes). It also will consider patients who are hard to match because of a high PRA.

[Speedy1wrc]

As with every aspect of dialysis, you get used to it, pretty darn fast. If you've made it through dialysis this far consider yourself a pro. I was diagnosed with diabetes at 14. Back then at syringe's were glass and needles were sharpened and reused. They were fat suckers too. But, you learn. Keeping in mind your health is the most important part gives you perspective.

Even after all those years I wasn't terribly keen on cannulating at home or even the idea of doing it myself. It was very different, but I was able to do it.

When in center with a catheter I was getting infections every other week. Once I got a fistula in went to once a month. Not a glowing review for the dialysis center. I've been at home and in almost a year and a half not a single infection. My fistula went in March of 2005. Got a rest for 6 years while I had a working transplant, but restarted dialysis January 2012. Still going strong and no issues.

[JW77]

A good fistula is an investment, just hope you have a good vascular surgeon. Mines lasted over 20 years. I self needle, survived 3 transplants.

One of the most important things that seems to be neglected, or I've found people don't get told about is strengthening the fistula almost as soon as its made. 

http://Http://fistula.memberpath.com/Patients/PatientEducationalMaterials.aspx

Is an excellent resource for those getting a fistula.