Please help me

[kristina]

I understand your situation, I am just about one step behind you and I do feel for you.

Whenever I stop to think about it I realize Dialysis is the only way to continue to live right now

& hopefully a better treatment for ESRF is discovered soon.

My thoughts are with you.

Good luck from Kristina.

[billybags]

MooseMom,I am so sorry to hear about your problems, we all go through it. My husband went about 5 years before he had to go on dialysis. It comes as quite a shock. The heart stress test was done to my husband 3 weeks ago, it is called a Nuclear test, sounds way out doesn't it. He had to do it over 2 mornings. One was a rest test and one a speed test. They inject you with a dye, leave you for 30 minutes and then do the test, attach pads to your chest. The next day you go through the same thing. Please just take one day at a time, remember being on dialysis will keep you a live, you will have good and bad days, there is no getting away with it. It is a new road to travel down, we will be walking it with you. Keep posting.

[Joe Paul]

MooseMom, keep your positive attitude, you will do much better with what lies ahead for you. Please go ahead and get the fistula, it is THE BEST route to go IMO, so far as the cleaning of your blood is concerned, and little chance of an infection. No matter where they decide to put your fistula, exercising it will help to develop it, for an easier time for the tech, inserting the needles. I don't think there is much worse then someone having to "go fish" for your access. That leads to bruising, and infiltration, and can cause your fistula to clot, or even fail. So far as the operation for the fistula is concerned, id rather be sleeping myself, when you wake up, its in. You will ( or should) go through a "mapping"  first of all ,(done with ultra sound), for the surgeon to see what artery is best, and where, for the placement of the fistula. Its a simple procedure, no pain involved. Before I had my fistula done, I got in touch with a couple dialysis centers, and asked if there was one surgeon preferred more then others - a good surgeon leads to a good working fistula. I hope this helps, if you have any more questions, feel free to ask, lots of knowledgable persons here at I.H.D.

[tee]

Please talk with your nephrologist, before the stress test with contrast, they need to use a certain kind for kidney patients, as the contrast exits the body through the kidneys.  So if you are not on dialysis yet, and your kidneys are barely functioning, they need to be careful what is used, as to not send you into kidney failure.

My husband is currently on dialysis, and has been fighting it for years, he just cannot accept it, he ends up in the hospital, when he does not have dialysis, and they end up having to inject him with all sorts of stuff.  When not on dialysis, he becomes run down, and anemic, and sleeps allot.  Wehn he is on dialysis, he feels better, and is able to get out of bed.  I think he is finally realizing, the he cannot live without it.

Get the fistula done, as it takes time to heal, my husband had to have a catheater at first,, and got a nasty infection from it, which nearly killed him.  Talk with the social worker at the transplant center, sometimes they can be helpful, if not then try talking with the social worker at the dialysis center.

Good luck

[MooseMom]

When I call to make the appt for the stress test, I will of course tell them it is for a pre transplant workup and that I cannot tolerate contrast dyes.  I've had this same conversation before.  I should wear a placard that states that "I am a kidney patient" and be done with it.  I've actually had cards printed up that give my condition, allergies and neph's phone.  I've also registered with the Illinois State Emergency registry (or some such thing) in case I'm in an accident and can't tell people I have crap kidneys.

This may be a silly request, but it is possible for anyone to post a photo of their AV fistula?  My mother has one on her left upper arm, and it is enormous.  Then again, she is 82 and doesn't even weigh 90 pounds, so of course her fistula will look enormous.  She had to have a catheter for 18 MONTHS!! because it took that long for various surgeons to create a working access.  Her neph referred her to a vascular surgeon in a clinic that he, the neph, had some sort of financial interest in, so he benefited from her surgery which ended up butchering her, essentially.  She finally ended up going to a vascular specialist in the Texas Medical Center (she lives in Houston) and thankfully ended up, at long last, with such a brilliant access that the surgeon took a photo and was going to have it written up.  Anyway, this has made me distrustful which has added another element to my anxiety.  I don't really care what my access looks like, but I just want to be prepared.  So if anyone would mind posting a photo of their fistula, I'd be grateful.  Maybe there will be a prize for the prettiest and most congenial fistula...

[Bajanne]

Dear MM, I totally understand how you feel.  I did not have much time of preparation.  I had been rushed to the hospital with congestive heart failure and fluid on my lungs.  Then they told me that my GFR was very low - my kidneys were on the way out.  Then a few days later it had gotten even worse.  I had no fistula, so I had a catheter put in, and then later I got a graft.  I heard that diabetic patients usually had to have grafts because of their veins. I don't know much about fistulas, but I am always told that is the best kind of access to have.
Though it is difficult for all of us at first, somehow we come around and learn to appreciate silver linings.
One huge silver lining for me was this IHD family.  I can express enough how it helped me through my first horrendous and frenetic days.
You'll make it through - you have an entire international family with you.
My caring thoughts are with you all the way.

[MooseMom]

We have a nicely kitted out finished basement, but one large part of it is not finished; it has become my laundry area.  It is dirty and dark and depressing, but it is big and will be perfect for storing NxStage supplies.  I have already contacted our handyman guy and asked him to come out and finish it and make it nice.  I've been wanting to do this for several years but was too frugal to do it; it served me well enough as it was.  Now I have a plausible and justified reason for finally spending the money to tart it up.  That's the only silver lining I've been able to come up with so far, but it will do.  I'm also going to treat myself to a fab leather recliner for when I start HHD.  Silver lining number two.

And of course IHD...

[MooseMom]

Monday...I just got a call from the SW at the clinic I will go to.  She expressed admiration that I sounded so in control and organized.  She is so wrong.

It took every ounce of courage I had to call the vascular surgeon and make an appointment to get my arm mapped.  I was told that my referral was incomplete as it only provided approval for a consult and not a doppler ultrasound, so the result would be that I would have to return with another referral and have the ultrasound at a separate appointment.  So, I called my PCP to ask for a new referral, but no one answered because I guess they are all out at lunch having high potassium and phosphorus foods that I can only dream of.  Now I have to deal with incompetence along with my own grief and terror.

Why does ESRF have to be such a logistical nightmare?  How many trees are being sacrificed in the name of dialysis related paperwork?  This is so stupid!  And people really want to keep this healthcare system?  Really?

[Lillupie]

I've had that same stress test a few times myself. The whole point of them having you sit there and see how high your heart rate can go is to see if your heart can take a major surgery like a kidney transplant. .

Lisa

to continue...yes, the tranplant coordinator kept telling me that I have to inform them of when I have appts, am hospitalized, etc., so I will let them decide what I should do re scheduling this stuff.  The stress test involves an injection of the chemical to stress your heart (I'm fit...why can't I just walk on a treadmill or something?), and they won't be able to inject me in the arm that has the fistula...

[MooseMom]

Well, I just had a major operation like a hysterectomy, and somehow I survived that. 

I do understand the reasoning behind all of the tests, I really do, and I am glad they are being careful.  I just hate the idea of having some chemical in me that will make my heart beat faster than it is beating right now.  I don't need drugs when I have an endless supply of anxiety....

[monrein]

The only stress tests I've ever had for transplant (I've had two trxs)  was a walking on the treadmill test.  I would have thought that the only reason to do a "chemical" based test was if you were physically unable, for whatever reason, to get the heart rate up "naturally".

I'm curious about other members here and what their experience of this is.  I'm in Canada so things are sometimes quite different in different places.

I agree with you MM, it seems very odd.

[cariad]

I was prescribed the injection stress test for my most recent eval, but after reading about it decided I wanted to do the treadmill one, so I phoned my coordinator and asked him if I could just do that one. He checked with the doctor and they changed the prescription. I think they tend to automatically prescribe the injection to accommodate people who are too unwell for the exercise one. Even though I consider myself to be in terrible condition since I stopped exercising about 18 months ago, I blew their average patient away on the treadmill. (I think they said the average patient lasts about 7 minutes, and I went over 12.) Since most of that was walking, I can imagine that the population that normally gets stress tests is typically quite a bit older than I and also quite unwell.

If you want to do the exercise stress test, just ask.

[MooseMom]

Well, the transplant coordinator called and told me there would be no problem taking the stress test at around the same time I was getting my access, so I called the vascular people to make the appointment.  The receptionist pulled out my referral, told me about the things I couldn't do before the test, and then asked me if I could walk on a treadmill.  I said, "Yes" (I walk up to three miles a day!), and she said, "Are you sure you want this adenosine test?"

"No, but that's what they want me to have."

"Well, there's a big difference between a treadmill test which takes only one hour and the other test which means injecting you with something and it taking 4 hours."

So, I didn't know what to do; I've put in a call to my transplant coordinator (she must be tired of hearing from me by now) to inform her that I am very capable of walking on a treadmill and do I really need the adenosine test.
This is just my first day of making appointments per referrals, and I haven't been able to make a single appointment.  This is just not helpful.

[RightSide]

Please talk me down.  I am unconsolable.  I can hardly see to post this.  I feel like I am being led to my execution.  I just can't willingly allow someone to do this to me.  I just cannot.  This is just a bridge too far for me. 

They also sent me my referral for a "2D Echo with adenosine stress test", and from what I have learned, it involves needles and chemicals that stress your heart...I have to do this test for the transplant people.  Do I do that test before having the fistula done?

MooseMom,

I'm sorry you feel so bad.

I still haven't had the adenosine stress test.  It's part of my transplant evaluation, not preparatory for dialysis.  Mine is scheduled for next month, long after I started dialysis.

But remember:  One reason you feel so down and depressed is because you're physically weakened by your kidney failure.  You're not yourself, mentally or physically.  Your mind is clouded by all those toxins in your brain.

So the only thing to do is go forward and suspend judgment about everything for now, until the dialysis and meds kick in and you're back to feeling and acting the way you did years ago before you got sick.

Let me repeat that:  Make no judgments about anything important right now.  Not whom to vote for or whether to remodel your house or whether to buy a new car.  If your doctors have the data that shows your kidneys have failed, then it's time for dialysis.  Try it for six months and then see how you feel about it.

You're luckier than me.  You're getting a fistula started a lot sooner than I did.  I was on the catheter for 14 months before I got a working fistula.

So hang in there.  Suspend judgment. 
Don't even try to decide if you agree with what I wrote here!   

[RightSide]

I was prescribed the injection stress test for my most recent eval, but after reading about it decided I wanted to do the treadmill one, so I phoned my coordinator and asked him if I could just do that one.

At my hospital the test is a reclining bicycle, not a treadmill.

My problem is the residual bone pains in my legs from the high PTH I used to have.  They start to hurt if I walk a long distance.  I'll have to load up on Extra-Strength Tylenol before pedaling away.

[MooseMom]

RightSide, you know, you're right (hence your name?).  It's entirely logical to assume that your brain function is distorted because of poor kidney function.  All that dirty blood is probably making me crazy, and I'm not kidding.  I have a book called "Dialysis without Fear" that I bought several years ago in anticipation of this day, and a dialysis patient was quoted as saying that he wanted to apologize to anyone he may have yelled at before he started dialysis; he said he wished his doctor had told him that the biochemical imbalances that are a result of ESRF affects your moods and your thinking.  I shouldn't make major decisions right now, but I sorta have to.  I have to make big decisions like do I really want a transplant and how best should I approach dialysis?  Not only that, but I have to keep on top of all of the paperwork!  My goodness me, the paperwork!  But your advice is sound, and I'll keep reminding myself of it.  My brain is clear enough to agree with you, so thank you.

To update, the transplant coordinator checked with the surgeon, and it has been decided that a treadmill stress test would be fine.  I am awaiting a new referral and will make an appointment accordingly.

It took my mom 18 months to get a working fistula; she was on a catheter for all of that time, so RightSide, I have some knowledge how hard all of that must have been for you.

[MooseMom]

I thought I had achieved some modicum of peace, but I'm spiralling downward again.  I spend time and effort educating myself so that I can be my own best advocate.  I feel it is important to understand my condition and to fully comprehend why I must take this drug and not eat that vegetable.  I do my research, but the more I learn, the scarier this all gets.  I'm sure I am not the only one here who, upon stumbling across some tidbit of information (like the gobsmackingly high incidence of LVH in CKD patients...even before they are on dialysis...even before their eGFR starts to decline!!!!!!!!!!!!!!!!!!) slips into a state of depression (and even a transplant doesn't cure it!).  At what point do you all quit worrying and just get on with life?  I can't seem to get to that point.  I really try, but when even my neph tells me that I won't die of kidney failure but will instead die of complications from it, well, it's rather soul-destroying.

[Sunny]

MooseMom,
I'm so understanding of your last post. The more research I do, the more lousy information I find about how renal disease will affect our bodies, even with a tranpslant or dialysis. It's enough to make a person crazy if you let it worry you to much.  Hang in there.

[MooseMom]

It just starts to get so complicated?  I can't wrap my head around it all.  You need a degree in biochem to understand it all.  I've had fsgs for almost 20 years, and I've always wondered what bodily damage has accumulated over that time.  Well, LVH is probably one consequence!

[Lisa]

MooseMom  This is my 3rd time thru the wheels of the dialysis/transplant machine so I know from where I speak!
Time one was most definitely scary...I was acutely ill and things start happening quick. So you are already 1 step ahead!
 I personally did not research all the things that come from kidney disease, even though I was diagnosed at birth, so I was only able to worry one day at a time!
I am now more aware of all going on and what can happen and what needs to happen.  I have only been back on dialysis 3 weeks after losing a 15 yr old transplant and all I can do think healthy and hope my new wait on the list isn't long...(I only waited 1 1/2 yrs for the last one).
I am investigating how to get back to work ASAP and I have a physical job as a vet tech where I know some of my duties will not be allowed but I will be glad to get out everyday ...glad to be able to anything since dialysis is keeping be alive!!!
I hope I'm not out of place but I am also on Paxil due to the emotional ride that kidney disease can be ...I think medication and therapy or social networks are the best way to go in getting on the best track.

[srg22]

hi moose mom. i didn't read any1 else's replies to yo i just read your posts and decided to write. when i was in the hospital i was on my death bed and the doctors had me sign the paper to put a perm access in my arm(fistula) i regret signing the paper because i still am using my catheter and the doctors keep pestering me to use my arm but i cant do it and i wont do it i would have rather done the method of pd for dialysis at home where they have a catheter in your stomach. i am proud of you that you don't care about how it looks but for me i have many insecurities i am a hair stylist and to have this thing in my arm upsets me and makes me feel un comfortable. you have a choice and make sure you seek out all other options before making a decision that will be with you for the rest of your life. if you need to talk i am here for you.

xoxo
sophierose

[MooseMom]

Lisa, no, you are definitely not out of place; anti-anxiety meds, therapy and social networking are all very good coping mechanisms, and I will probably try them all.  IHD has been very helpful...IHD=social networking.  As for therapy, I will have access to the social worker at the dialysis clinic and at the transplant center, and I intend to ask them if there is someone I can see.  My renal nutritionist actually suggested two therapists who work with people who have chronic diseases, but unfortunately, they are not in my insurance network.  But maybe the social workers will have some suggestions.  As for meds, I am thinking seriously about that, just to get me through the initial stages of dialysis.  But for the time being, I think I will stop "researching" for a while.

Thank you for your reply; you are an old hand at this, and I am so grateful that you have shown me that it is possible to lead a good life despite kidney problems.  I guess we get this image of ourselves growing old and watching the grandkids grow up.  My only son is autistic and probably won't be having kids of his own, and I don't think I will get to grow old, so I guess it is time to discard those particular dreams and imagine some that are more realistic.  What I feel is grief for what I feel I've lost.  I know that such grief is a normal part of the process, but that doesn't make it easier.  It is simply my turn to experience what the rest of you have experienced yourselves, so I know that you will all understand.

[MooseMom]

sophierose, if you've changed your mind about your dialysis modality and want to change to PD, won't your docs let you do that?  It seems unfair of them to make you do something you don't want to do.  I can understand why you don't want a fistula.  It's not insecurity...it's just a preference.  What may seem petty to others may be really important to you.  I don't want to do PD because with PD, you can't go swimming, and I swim every day in the summer.  Not only that, but my husband and I holiday in Michigan each summer for the express purpose of swimming in Lake Michigan.  Now, that may seem petty to others, but I don't really care.  How you look is important to you, and how I can keep swimming is important to me.  That's just the way it is, and let's not apologize for it.

The idea of a fistula does bother me; don't think that it doesn't.  It just represents in my mind a constant visual reminder that I'm sick.  I need to find another way of thinking of it.  I need to start seeing that fistula as something positive, as my lifeline, as my gift to myself and to everyone who loves me and wants me to be around.  But then I think, "Oh, that's a load of bollocks."

Thank you for writing, sophierose.  You're very kind.

[Lisa]

Let me also tell you I have a supportive mom who has not only dealt with me but my brother who is 16 months younger was born with cerebral palsy that affects his fine motor skills and he has to be in a workshop...at various times in the last 44 years both of us have been home (including right now) and my mom at 67 is taking care of us (my pets) my stepdad and herself as well as still working 4 12 hr days...
She also has PKD and is healthy now only follows with a nephrologist!!


....AND SHE TAKE NO PSYCHE MEDS!!!!!! 

[RichardMEL]

sophierose - the reason they want you to stop using the catheter and to use your fistula is two fold - one the fistula is a much better form of access and you can get much better performance ("clearance") out of it, and the risk of infection is MUCH lower than via catheter. The more you use that permacath the more likely it is something bad will happen. I understand you want to do pd - was that not discussed with you as an option prior to dialysis? At any rate having a fistula is a *GOOD* thing, because even if you do pd you could get an infection or something and not be able to use it, and then you'd be bloody glad to have the fistula so you could keep doing dialysis.

MM - I'm surprised at all these tests they put you through. I have done bugger all tests for an "evaluation" - I've had a few EKG's and ultrasounds and that's that. They say my heart is fine, my liver etc I'm healthy and ready to go and don't see a need for any extra stress tests or anything (I've asked the transplant co-ordinator a number of times about this). I'm sorry you have to go through that extra stuff - but remember they are doing it to ensure that you are in the best physical situation you can be to accept that transplant when it comes along. Try and grin and bear it because the ends definitely justify the means.

About the fistula being a visual reminder that you're sick.. well yes there's that, but I knew I was sick anyway - the fistula is almost something I ignore really. Yeah sometimes it gets funny looks from people but meh. Actually a few weeks ago I was with my sister at the animal emergency hospital(her cat was not well) and a lady there also with a sick cat asked me if I was on dialysis. Turns out she worked next door to a dialysis unit so she saw fistulas all the time. She was so cool! Then we got chatting about our cats and it just wasn't an issue. Being tired and all that other stuff was just as much an indication to me that I was sick, as the fistula (and of course the lab results backed it up with hard numbers). Try and treat it as part of your body(it is, afterall). Some people hate their knobbly knees, or how big their nose is.. a fistula? what's that in comparision?!