Fistula scheduled, eGFR sinking

[Dannyboy]

Hi Everyone,
Just a note to say got my latest labs today, and my eGFR has slipped to 17 (down from 20 about a month ago).    Doesn't really surprise me that much as I've been really ballooning up lately, and even more tired than before.    Having sleep issues.   My next Neph visit is Monday.

Got AV Fistula surgery scheduled in a week and a half, so with the usual "heal time", hoping I won't need it too soon--yikes.    I know the eGFR number can bounce around a bit, but the trend is definitely downward. 

Soooo, that's the way it is at the moment.
----Dan

[MooseMom]

I promise you that once that fistula is done, on more than one occasion you will think to yourself, "Thank goodness I'm ready to start D whenever that day may come."

I got my fistula created when my egfr went below 20, and that was well over a year ago.  I don't have to live with the fear of having to get a neck cath.  So, good for you.  I know it's all quite traumatic, but it would be more so if you don't have a mature fistula.

Good luck with the surgery.  You're on the right track.

[Dannyboy]

MM:  Yep, I know you are right about being glad I get/got it, even if my numbers go better for a while.

This step (getting the fistula) sure is a "bridge" to cross that emphasizes the reality of CKD heading to ESRD.   I know that most of the folks here have 'been there, done that', so that is comforting of course.   

Thanks for your upbeat remarks, MM.

Hope you are staying cool in Illinois with all the high temps back there...

---Dan

[MooseMom]

I was a true basket case on the day of my surgery.  The nurses kept saying, "Oh, you'll get a new kidney real soon!" and I'd retort, "You don't know that." (I didn't appreciate the platitudes.)  I ordered the anesthesiologist to put me completely under as I didn't want to be awake for any of it.  I was in tears during the whole pre-op period.  Finally, they just gave me a shot to shut me up!   If I can get through it, believe me, anyone can.

I know just what you mean about this being "the bridge".  To me, it was the Rubicon.  I really do understand the symbolism and the feeling behind it.

All the more reason you will be so relieved when it is over and you have a good working fistula.  It will be one less thing to worry about.

Yep, it is infernal here.  I went swimming yesterday, and I was sweating in the pool, it was so hot...at 11 in the morning!  Night before last, it was still 90 at 3AM.  So not fun.  I love A/C!

[M3Riddler]

Hi Everyone,
Just a note to say got my latest labs today, and my eGFR has slipped to 17 (down from 20 about a month ago).    Doesn't really surprise me that much as I've been really ballooning up lately, and even more tired than before.    Having sleep issues.   My next Neph visit is Monday.

Got AV Fistula surgery scheduled in a week and a half, so with the usual "heal time", hoping I won't need it too soon--yikes.    I know the eGFR number can bounce around a bit, but the trend is definitely downward. 

Soooo, that's the way it is at the moment.
----Dan

Hi Dannyboy,

Im sure this is a stressful time for you knowing that you will eventually be on dialysis. Just keep strong and dont let dialysis control you, but rather you be in contolr of dialysis. Learn as much as you can about everything you will be involved with... Including asking your nephrolgost any question you may think of.
Have they informed you of the different types of hemo dialysis there are to choose from... They should discuss the benefits and cons of each type and help you make an educated decision based on your lifestyle.
I would highly suggest home hemo. You will be in control of your treatments and will not have to be on someone else's schedule. There are many on home hemo and it has proven to keep you much healtier than if you were in-center 3x per week.  Remember, your kidneys work 24/7. When you go in-center, you are only receiving up to 12 hours per week. When you dialyze at home, you are dialyzing anywhere from 18 - 54 or more hours per week. 
Have they done any studies on your veins yet to determine where the fistula will go?  Make sure you get copy of the report for any precedures regarding your fistula. These are good to have on hand.  Ask the surgeon the size of your vein and artery in which he will be using.  There aare many vascular surgeons in the US who will only work with a certain size as this is what they are most comfortable with. If you ever hear a surgeon say, your veins are too small...find out what this means....how small....and what are the measurements... There are many surgeons out there that work on smaller veins with great success. Using your own natural veins is much better than putting a synthetic gortex graft in. A graft in an easy way out for the surgeon. This is why many like to put them in place before researching to see if you can have a natural fistula created.
Stay on top of everyone.... Question anyone and learn...... Information is power... You will see that if you go in armed with knowledge, you will be treated much differently than someone who hasnt done any research....

Let us know how everything goes...... You will be in my prayers for success.......

///M3R

[Dannyboy]

MM:  "Rubicon" yes, that's exactly the correct analogy. 

M3R:  Thanks very much for the comments and advice.
Yes, got the vein mapping done (by the vascular surgeon himself, not a technician), and have the surgery scheduled for just over a week from now.   I did my "due diligence" about the surgeon, from all accounts he his top notch, and has extensive experience with AV Fistulas.   I didn't record the vein sizes he showed me and identified as he measured them though.   

I get your point about knowledge, and let me say I've come a long way knowledge-wise since I first heard "CKD" aimed at me, and even more since joining IHD.   

Regarding modality, my intention is to do home HD, you bet.   For the reasons you cite.   The center I'm hooking up with is all set with NxStage.

You say "stay on top of everyone".....I hear you.  We're on the same page about being an informed patient, and being sure I've got the whole picture, especially in subject areas where medical opinions can vary.

---Dan

[MooseMom]

Dannyboy, you're gonna be just fine.  You know what you're doing, you're informed and you are not inert with panic.  I have all the confidence in the world that as scary as this all is, you will work your way through it all and will be rewarded with good health on dialysis.  We have your back; we are right here with you.

[Dannyboy]

Thank you Moosemom for the upbeat outlook.   

The "been there/done that" wealth of experienced folks around here is just so very outstanding.   As a fairly recent 'joiner' I continue to be pretty much blown away by the depth of technical knowledge and perception, and by the the outpouring of person to person kindness and empathy here on IHD.

I recognize I have a lot more to learn, and there will be adjustments and challenges ahead.   Participating on IHD is a great help and comfort.    At this point, I haven't shared the fact of my CKD (or the potential for D) with anybody much beyond my immediate family.   My wife has 'risen to the ocassion', thankfully. 

---Dan

[mcclane]

Had my fistula put in april of this year.  Took about a month and half for it to mature, and the hospital is now starting the needling to toughen up the vein.

Hope all goes well for you. 

[Stoday]

I was lucky. I had my fistula a year before it got used.

Others got one early too, but it failed or didn't develop and they had to get another in their upper arm, abandoning the failure. That can take time, so it's all to the good that you get one in early.

When I got mine, I felt that I had really joined the club and had my badge to prove it.

[MooseMom]

Thank you Moosemom for the upbeat outlook.   

The "been there/done that" wealth of experienced folks around here is just so very outstanding.   As a fairly recent 'joiner' I continue to be pretty much blown away by the depth of technical knowledge and perception, and by the the outpouring of person to person kindness and empathy here on IHD.

I recognize I have a lot more to learn, and there will be adjustments and challenges ahead.   Participating on IHD is a great help and comfort.    At this point, I haven't shared the fact of my CKD (or the potential for D) with anybody much beyond my immediate family.   My wife has 'risen to the ocassion', thankfully. 

---Dan

Well, this next bit isn't gonna be so upbeat...

Please do not be too disappointed if, once you've shared this news to people outside your immediate family, you find that they just don't "get it". Please don't expect them to.  All you really need is the love and support of your wife, a good medical team, your friends here at IHD and a good dose of self-confidence.  I've read so many posts from members who are upset because Uncle Bud and Aunt Bertha don't seem to care, and cousin Susie won't even think about being tested, and this disappointment can hurt more than any dialysis needle.  If the people you tell respond with the empathy and love you deserve, count your lucky starts, but don't let anyone else get you down.  You have more support than you know right here on IHD.

[Dannyboy]

Re: Fistula 'heal' time.  Nothing I can do about it of course, but I might be cutting it a "little close", time wise.....see my Neph tomorrow, have really ballooned up in legs and ankles, even with Lasix, just hoping I'm *not* sliding so fast that I'll have to get a temporary "neck job" while my fistula heals.

MM: Re: letting others outside family know of CKD, ESRD.   Yeah, I know what you mean about others not reacting as hoped for/expected.....I suppose it is a matter of expectatons:  if a person doesn't expect others outside their immediate circle to really and truly understand (and remember your issues in the future) then you won't be disappointed.....when a few unexpectedly *DO* show empathy and try hard to understand and be supportive, well, it's sort of icing on the cake.

People so many times just don't know what to say, or they are somehow threatened by serious illness as if they might "catch" it.    They don't want to "hurt" so instead of trying to figure out what they can say/do they don't say anything.    Similar situation when a death occurs, after the initial outpouring, the rest of world goes on, so to speak (quite understandably of course), but we are still left with the reality of the loss of a loved one that is there, before us constantly.

I recognize this aspect of things (others not really being supportive) intellectually, but it still hurts!

--Dan

[MooseMom]

A lot of people are more worried about upsetting you and therefore looking callous than about taking a risk and trying to make you feel better.  It tskes no small amount of courage to risk embarrassment by making sure an ill person knows you are there to support them through hard times.  Inertia is a powerful force and it is all to easy to make excuses. But sod all those cowards... you have us, and we are a force to be reckoned with.

[okarol]

Our daughter had the chest catheter for 6 months (she went from creatinine of 6 to 10 in a couple days) and it worked fine while she had fistula surgery twice (first was botched, found new surgeon who repaired it.) So even if you don't get the timing right, don't worry about getting a temporary tunnel catheter if needed. Good luck!

[Dannyboy]

Guess I was thinking a "neck job" [sorry, very poor choice of words] Venous Catheter was to be avoided, a bad thing.   Just displaying my ignorance brought on by fear of the unknown. 

I take it the Venous Catheter can be placed and becomes useable in a short time??    Is it typically a Surgery Center type thing, like an AV Fistula, or is it more of a hospital stay type thing?

"Fear", I know you nice people have all been there, done that.   My sweet wife keeps telling me I'm worrying way too much about all this stuff, I guess I'm just scared and the reality of all this is hitting me.    The 'being in control' side of me is feeling so helpless.   I'd rather have dental work without novacaine.    I want to keep working, will this other temporary sort of access keep me sidelined if it comes to that?   Feels good to just blast off here a bit.   

---Dan

[mcclane]

I take it the Venous Catheter can be placed and becomes useable in a short time??    Is it typically a Surgery Center type thing, like an AV Fistula, or is it more of a hospital stay type thing?

"Fear", I know you nice people have all been there, done that.   My sweet wife keeps telling me I'm worrying way too much about all this stuff, I guess I'm just scared and the reality of all this is hitting me.    The 'being in control' side of me is feeling so helpless.   I'd rather have dental work without novacaine.    I want to keep working, will this other temporary sort of access keep me sidelined if it comes to that?   Feels good to just blast off here a bit.   

---Dan

I had my cvc put in early april.  The hospital didn't start using it until roughly 2 weeks later (reason being, that was the earliest they could get me in to start dialysis training).  I had the fistula put in near the end of april.  For me, both surgeries were day surgeries.  The cvc was more 'radiology', but the fistula was surgery.  In both cases, they kept me about 4 hours after the surgery (for observation, just in case), but after that, they kicked me out and sent me home.

When I had my cvc put in, i went back to work the next day.  It was slight discomfort, but nothing to write home about.  I think I went back to work the next day after the fistula was put in as well.  It will all depend on how well you handle the pain (i found the fistula was abit more painful after the fact than the cvc). 

[malaka]

I'm having mine on Friday.  My nephro wisely said, or perhaps just to encourage me, "its better to have one and not need it than it is to need one and not have it.  Since my creatnine has jumped to 4.2 and with it my eGFR to 15, I really don't want to wait too long.  Same problems Dannyboy has -- lasix dose jumped from 40 mg per day to 200 mg per day, yet my legs swell "positionally" like when I've been sitting too long.  The bad thing about the lasix is that I'm up every hour and a half all night like clockwork even though I have rationed by liquid intake after 6:00 p.m.  I feel tired every morning. 

I hope I can type to let you know how mine went and what the recovery time is. 

BTW, kidney biopsy #2 done last week revealed cells called eosinophils.  Possibly drug reaction inflammation.  So I am off Protonix (version of the "purple pill" basically) without problems.  And, depending on what cardiologists says, I may be yanked off of a heart rhythm med called flecainaide whcih can also cause inflammation.  Maybe that will stop decline in kidney function, maybe not.   Worth a try, isn't it? I've already been taken off Lipitor and ARB inhibitors, as well as cyclosporin, ACE inhibitors and corticosteroids as nehrotoxic effects now outweigh perceived benefits. 

BTW #2:  mine is being done outpatient surgery at a hospital.  The vascular surgeon does them only at the hospital.  Why?  I don't know.  I suspect they are concerned about any need for transfusions and the like.

[MooseMom]

malaka, I got my fistula created at a hospital, too, but it was in the day surgery department.  It's just the way the system works in my area.  I've had three procedures done as 'day surgery" in the same hospital.  And I agree with your neph...better to have the fistula and not need it.

Dannyboy, I'm worried that we've given you the idea that a chest/neck/whatever cath is doom itself and is to be avoided at all costs.  This is not true, as okarol has pointed out.  My own mother had to start D on an emergency basis, and after a lot of faffing about and some rather bizarre circumstances, she ended up spending 18 months with a cath before she had a working fistula, and she was just fine.  BUT she was meticulous about keeping the area clean and was extremely careful because she understood that the risk of infection with this sort of access is higher, but you know, you just have to do what you have to do.  So, get your fistula and do what you can to get it to mature quickly, and if it is not ready when you need it, a cath should serve you well until the fistula is ready.  That would be a better scenario than if they tried to use your fistula too early and thereby possibly destroying it.

I'm sure your wife is stupendous, but I am not sure it is possible to worry "too much" about approaching the need for D.  Well, I suppose you could worry so much that you become catatonic or suicidal, but you are about to pass through a life-changing event, and it is appropriate to "worry".  It is this "worry" that spurs you to become educated and to advocate for yourself.  If my husband dared tell me that I was worrying too much, I would have to restrain myself from slapping him silly, and I might seriously think about booting him out of the house!   I make damn sure that he knows just what dialysis and renal failure does to a person.  Every time he eats a pizza or drinks a coke (which is a lot of the time), I'll ask, "What would you do if you couldn't eat pizza for the next seven years, and what would you do if you couldn't sit there and drink two cans of soda in one sitting because your body would pop due to the extra fluid?  And when are you going to get your flu shot (he hasn't ever had one because he's scared it will hurt.)?"  So, he knows not to be so stupid, and you might think about how to gently explain to your wife what happens to a body that is in renal failure.

You have every damn right to be scared, and from my point of view, the scariest part is having to relinquish control to staff who don't give a 4X and to have to trust in those people.  But you are a smart and dedicated guy, and I know that you will grab whatever control you can.  This is why I am planning to dialyze at home.  I heartily resent having to deal with this stuff at all, but since this is my fate, I will control it as much as I can.  You can, too.  You are already exercising control by participating on IHD.  You can influence your emotional and psychological state by coming here and venting or by using this forum as you need.  That's a HUGELY important thing!

[malaka]

Here's the scoop on this morning's surgery.  Besides being told to go to a different hospital than planned and 12 hours before the procedure having it moved up in the day so I had to be there at 5:30a.m., it was hardly more troublesome than a kidney biopsy.

Getting my arm shaved was unexpected.  The sedation was virtually complete so that I recall nothing except being wheeled into the operating room and waking up in recovery.

My arm  was apparenltly painted in iodine as its orange like a bad 1970's instant tan was applied to it.

The bandage is about 1" wide by 4" long, and taped on.  I can type with both hands, too. 

I haven't looked at it yet as I am leaving the bandage on tonight. 

All in all, about as troublesome as a well-done root canal. 

As the 80's tune went, "don't worry, be happy."  No blood transfusions, no drain tubes, no sore throat from anesthesia tube down the throat.


 

[kellyt]

I had the vein mapping and my first fistula in my left wrist still never worked (vein too small).  I had to return one month later for an elbow placed flstula.  Something to think about, but not to worry about.  My recovery was virtually painless.  The wrap and sling were the worst part.  Good Luck!   

[Dannyboy]

Thanks for the comments everyone.

Surgery coming up in a week, the surgeon said my veins looked "plenty large enough" and that the risk of complications at this point is small, but then he disclosed all the undesired/unplanned for stuff that can go wrong, such as insufficient blood flow to the hand afterward, and what the remedies would be.   

I got it that "it's better to have a fistula and not need it, than need it and not have it", and also that an 'emergency neck/chest' catheter is not the end of the world.   My GFR dropped a bunch in a short time, so naturally the thought of having to go that route crossed my mind. 

Good to hear your surgeries went good Malaka and Kelly.

@MM:  <slap  him silly>  LOL.

Although I shield it from those around me, still struggling with accepting the crap of nearing ESRF.   Have days that are better than others, but significant degredation in energy level and edema is largest current gripe. 

---Dan

[malaka]

One tidbit I picked up just before surgery was that my creatine was measured at 4.6.  Translated into eGFR, that's 13.  I dion't know when my blood test was done, or whether my recent iinjury to the back of my hand and ribcage caused a temporary jump in creatinine.  I'm calling my nepho's office tomorrow. 

And, adding insult to injury my second opinion nephro wants me to see an opthalmologist.  Her nurse called and left me a message that they would schedule the appointment.  She called again, telling me to find my own opthalmologist since at this university hospital I can't be seen (no pun intended) until the end of September.  Since that was another phone message, I don't know why I am supposed to see an opthalomologist since I saw one last December.  So that's another call to a health care provider.  Being sick is becoming a full time job.

[MooseMom]

Malaka, how does seeing an opthamologist fit into all of this?  I'm bewildered.  I'm certainly missing something here!

I'm pleased that your surgery went without any problems!  Must be a huge relief!  Are you feeling the thrill yet?

[malaka]

I saw my own opthalmologist today.  Luckily, somebody had canceled, so I got in in less than one hour.  I'd confronted the nephro's nurse on the phone by telling her I was not a child and therefore had to know why I needed to see this other specialist so urgently.  With some reluctance, she told me "to check for uveitis".  Now, I'd never heard of that before, but the eye doc explained that some CKD pts have an inflammation of the lining of the eye called uveitis.  Sometime the front of the eye, sometimes behind the retina.   The articles I read are too "Dr. Science" for me, but there is a connection. 

Lesson:  see an opthalmologist periodically.

The exam was like an old fashioned eye exam -- my pupils are dilated wider than Amy Winehouse's were.  Which is o.k., except its bright and sunny here today.  Sp stepping outside is like having two ice picks stuck in your eyes. I'm sitting in a darkened room at work with the brightness of the computer screen turrned down.  And up close vision is still blurry, so I have lots of typos.

[MooseMom]

I have to say I've never heard of a connection between CKD and "uveitis".  That sounds like a made up word, sort of like "cooties."  [six year old kid]"Ewwww, you've got uveitis!"[/six year old kid]