Needing Help...

[7piglets]

I am fairly new here and dont post often but do like to read and get informed ..however, this time I need help .
To refresh I am type1 diabetic when I got pregnant with my twins my kidneys began to fail and my babies were stillborn. (that was 4yrs ago) I have had 3 different kidney drs  in that time and continually asked them to 1) get me on a waiting list for transplant and at time I was told given i had cancer I need to be cancer free for  5yrs (this I have later found out was wrong I could have got on after 2yrs ..2) I asked to be put on pd dialysis which my dr stated I did not need dialysis yet (this was last year) 3) I finally convinced them to put a pd catheter in my which was placed in this past Feb...since the moment I was on the o/r the catheter did not work and dr stated probably blood clots and sent me home and stated the clinic will flush it and will be fine.. (it is not stil in still not working ) The dr was not very worried about getting it working and kind of left at standstill so I found another dr. .Well here is where things get crazy my new dr states I need dialysis immediately he states my creatine is 6.7 and my GFR is a 6.. Iam told I have 2 options 1) go to E/R get checked in have a fistula put in my arm and also my neck so I can begin right away.. or 2) play russian roulette see if my body can wait until I have fistual put in as scheduled June 6 hope it matures and I can begin ..he says risks for this option are death, stroke, toxic poisoning, and the other had something to due with heart.. Now their is one other option try and get this catheter in stomach working but I cant find a  dr to do it. .Oh add to my stress I have found out I have a mass in my lung which is metastatic cancer from previous cancer I had I had PET CT which also shows uptake on my left knee and colon so need those testing done and add in a bone infection or possible gout in my foot that the dr's cant' figure out what it is even after biopsy whew...I am tired just writing all that ..
So my question ......do I chance it ..? My symptoms are my hands have a slight tremor ( I cant see it by dr had me hold my arms straight out and he says he sees.. He doenst hear scratchy ness when listening to my heart (which he says is good sign) I am eating ..my blood pressure is fine (in fact they took me off bp meds) in am I get nauseous when I first wake up but rest of day I am fine just tired (which also my anemia is a 9 since I am still waiting for ins to approve my aranesp...
just curious how you guys would handle it ...
OH another crazy question but will throw out there if someone has cancer I know you cant get on waiiting list for kidney however, what if someone is willing to donate ?? I can't get dr to answer me on this ..(I have been told my cancer is not affected by immune suppressive drugs so that is not a reason I already asked about that )
thank you so much for reading and hopefully any advice. ..

[flip]

You have a lot on your plate right now and this is just my opinion. With your numbers, I would start dialysis ASAP. Any more waiting could be very dangerous. Most transplant centers won't consider cancer patients even if they have a live donor. They consider the risk factors too great. I'm a cancer survivor but I have to be cancer free for 5 years to even be considered for a transplant. Just take it one day at a time but please start dialysis as soon as you can.

[Lori1851]

Wow you sure have alot going on. I am not on dialysis but my son is. So do you have a permcath in your chest to start out with and its not working?? Dustin has had his repositioned. Wonder why they wont try that?
Lori/Indiana

[monrein]

You sure are dealing with an awful lot and I agree with Flip about starting dialysis ASAP.  There is most likely a good medical reason why you can't find a doctor to redo the pd cath.  So it would seem logical to get a neck line so you can start and then sort out your access from there.  

I'm sorry you're having such a hard time right now and it must be especially hard with the kids to take care of.  Good luck and keep us updated. OK.

[jbeany]

Why only the 2 options?  If you get the temporary access now, and start dialysis, you can then decide if it's possible to fix the stomach cath or not.  If not, you'd still have an access while your fistula is placed and has time to mature.  There's no reason you can't start on hemo and switch to pd if that's what you prefer for the long run.  When you actually start should be up to how you feel, but watch the entire set of labs closely as well.  Don't hold off too long - it just makes the first couple of weeks on dialysis that much harder to cope with.

Not much help here about the cancer question - how do they know that the drugs won't affect it?

[Lori1851]

I have to agree with you Monrein. Get the neck access right away. I know nothing about the cancer thing but I will be praying for you hon.
Lori/Indiana

[mikey07840]

I agree with the advice to get the permacath placed and start dialysis as soon as possible.

I was scheduled for PD catheter and neck line catheter (Permacath) in February. When I arrived at the Operating Room that morning, they repeated blood work and said my potassium was so high, they were worried I would have a heart attack any minute. The did an EKG and cancelled my surgeries. I went upstairs and they placed an emergency temporary groin line, started dialysis that afternoon and admitted me. (The original plan was for same day surgeries.) I was in the hospital for 3 days. I did hemodialysis for a couple of months. I had the PD catheter placed a month later and then after another month for healing started PD. I felt better as soon as I started hemo. Once you are on hemo, you will likely feel much better and begin to plan out what your next steps will be.

Good luck... I will add you to my prayers.
Mike

[7piglets]

Thank you all so much for responding. .I really appreciate...
As for question
About neck catheter all i know is they always said to me ...you dont want to have to have a neck catheter. .so truthfully I am petrified to get it.  I am so nervous with all the surgeries as is and to add something in my neck arghh ..
In regards to the pd catheter reason no one wants to touch it is they all say it should be the dr who first put it in...but that dr is reason i am in the mess that i am.. (I should have started all this when I asked last year..he should never have let me get off the o/r table without it working, and he should not have sat back for months with no sense of urgency and telling me 'oh you will be fine you can probably handle a creatine of 10 you look fine) so I dont trust him AT ALL ..then add that alot of the drs I have spoken to dont seem to deal too much with pd catheter ..but damn the thing is there in place ..I had a mri and ct which all say it is where it should be ..so I just wish someone would look at it and try and get it working..
For me I would love to be able to get the fistula and make it until it matures ...am I wishful thinking most likely but I need a break a breather sort of...
The dr that I have now says he is going to watch me very closely and if my numbers change in least he is admitting me I go for my next set of bloods on friday...My potassium is not high as of last but phosphorus was a little higher and he put me on tons of renagel. 10 a day ..so that should help drop that ..he didnt say anything else was out of whack
I have alot of thinking to do tomorrow....hmmmm
thanks again .

[monrein]

I have a fistula that isn't mature yet and I had to have the neck line done and start dialysis.  I also wanted to wait for it to mature but couldn't and it really seems to me that you might have to bite the bullet and just think about getting your body cleaned out a bit.  Many of us here have had these lines and while I don't love having mine, I'm used to it now, it feels a bit odd but certainly doesn't hurt and the worst is that I can't have a shower (just a bath).  I know this isn't part of your plan but the other options sound less attractive since they could be worse for you in the long run.
Of course you're nervous after all you've been through but try to keep your eye on the goal os starting to feel a bit better.  My numbers weren't nearly as bad as yours but I couldn't continue feeling as crappy as I was.

[KR Cincy]

Ohhhh how we all understand the need for a breather sometimes, but I'd have to go along with the others and encourage you to get the permcath (neck or chest...mine was n the chest and while no fun, I survived) and start treatments. The damage that can be caused by waiting could be severe, and we want to keep you around and healthy for a long time. You will discover that you are stronger and braver than you ever thought possible, and we are all here to support you in any way we can.

keep in touch and we'll keep you in our thoughts....good luck!!!   

[del]

With those numbers get yourself on dialysis ASAP!!  You can get very sick very quickly!!! 

[IUNurse]

 Here are some ideas.  First I agree with everyone above- you need a permcath and to start dialysis.  You may think you don't feel bad now, but you will NOT BELIEVE how much better you will feel when you start dialysis (or at least that is what most patients say).  I think the doctor was trying to scare you about the permcath.  A permcath is a catheter (like an IV line) that goes straight to the outer chambers of you heart.  It is suceptible to infection (the biggest risk that I can think of) and infection could spread quickly if you don't catch it right away.  Make sure everyone who hooks you up for dialysis wears gloves and a mask if they are messing with the permcath.  The other bad thing about permcaths is that they can cause damage to the vessel that they are in if they are left in too long.  I have seen patients use a permcath for years (because they are afraid of needles) and eventually will ruin all of their veins in their chest/neck area because they have had a permcath in for way to long.  That said the risks of a permcath are low if you are using it for the right reason (to get another access for dialysis).

Where are you from?  Who is caring for this PD Catheter (the surgeon or the dialysis center)?  Have you asked your kidney doctor to help you get onto PD?  Worst case scenerio- go back to the surgeon who put in your PD cath in and tell him to take it out.  Then go to a different doctor and get another one put it.  If you are not going to the PD Dialysis center yet, it may not hurt to call them and ask for help. 

Bottom line is this is all your choice-your life.  What type of dialysis you do is your choice and your nephrologist should either help you obtain your goal of PD or tell you exactly why you can not do it.  There is no excuse for this "wait-and-see" mentality.  I don't know you and know your full history, but I can advise that you ask "WHY" often.  You should know exactly what is going on with your body- and if your doctors are beating around the bush to answer you then you need to find a doctor who will give you answers straight up.

Good luck.

[7piglets]

IUNurse ..
I am from Jersey.. My situation is kind of stange.. My kidney dr is the one who put the pd catheter in..on the o/r table he went to fill and went in but couldnt get anything out and he said it is just a blood clot when you go to dialysis center they will flush it out.. After I went to dialysis center and the nurse tried to put in and nothing would go in..she then squeezed the bag and I saw stars ..I thought I was going to pass out then a little went in and nothing came out ..They did order a test where they put contrast in the catheter and took photos (the dr doing it said it looks like catheter is higher up but will come down ) My kidney dr said everything looked fine and he doesnt know what is going on. I asked for a wire through to see if that would work (I saw someone else had) he told me no it wont work. So I asked for a surgeon to loook at.. I went to surgeon who said he doesnt feel comfortable going in so that is where I am at.. I had this put in in Feb my dr only saw me on every 5-6 week basis and I asked for him isnt this an urgent matter he told me NO I am type of person my creatine levels can probably be tolerated up in the 10s. ..I just got frustrated (plus at same time I am now told I have cancer in my lung and bone infection in my foot ) so just want anwers ..so off to new dr who now says this is serious need dialysis asap  The last dr said I dont need fistula this dr says all his patients are told to get one just as backup if ever needed. ..I have called 32 general surgeons and everyone says they wont take pd catheter out I should go to the dr who put it in..The dr who put it in said he wont take it out ...arghh. The new dr is sending me on Tues to a dr who is going to do pd catheter manipulation.. (I think the wire thing) God willing this will work if not I spoke to my family and will put myself in hospital and my mom will help my husband with the kids and dogs

[mikey07840]

7Piglets:
I also live in New Jersey. I had all of my surgeries at Morristown Memorial Hospital. I can recommend a very good vascular surgeon that did all of my access surgeries: Permacath insertion, PD cath insertion and Permacath removal. I was afraid of surgery too, but I was awake for the permacath insertion and removal surgeries and did not feel pain with either one. Please send me a personal message if you want more information.

Mike

[IUNurse]

7piglets,
     My experience is that you rmanipulation should work.  I am sorry that you have to go through so much for all of this.  I hope this manipulation is happening soon for you!  And yes, I believe they put a wire down the catheter and kind of flip it down to where it should be.  It should be down in your lower abdomen/pelvis.  Also, it could be wrapped in bowel which will make it not work.  Both things can be fixed by a manipulation.  You said another doctor had advised you to get a fistula for back up.  I believe that is probably not a bad idea.  As you have probably learned fistulas can take several months to develop and the more time you have for you fistula to grow the better.  Good luck to you!  And continue to ask questions of your doctor!

[IUNurse]

Also, here are some signs that you need dialysis NOW: severe fatique, sob, nausea/vomiting, diarrhea, chest palpitations, and swelling (if you already have swelling- then it would be worsening).  If you are experiencing any or a combo I would go to ER and have your labs drawn immediately.  For some people, changes in the creatinine can come about slowly, but for others they can happen quickly.  Just take care of yourself!

[meadowlandsnj]

7Piglets:
I also live in New Jersey. I had all of my surgeries at Morristown Memorial Hospital. I can recommend a very good vascular surgeon that did all of my access surgeries: Permacath insertion, PD cath insertion and Permacath removal. I was afraid of surgery too, but I was awake for the permacath insertion and removal surgeries and did not feel pain with either one. Please send me a personal message if you want more information.

Mike

I live in New Joisey also, Bergen County area near Hackensack.  I have one of the best surgeons around, Dr Roger Keys.  He's excellent and experienced.  He works with Dr Simonian who is good as well. 

Donna

[MyssAnne]

Honey, I so agree with everyone else. Get the neck catheter and start hemo immediately.
I've had to do hemo 3 times with my pd catheter healing, and I can tell you, it's not that bad.
Irritating,yes. That bad, no.  Admit yourself to ER if you have to, but get it, and get on dialysis
right away!!!! 

Let us know how you do!!!

[7piglets]

First off want to thank you all so much..
Secondly to my fellow Jerseyites..I will keep you info and may be needing some info if this next step doesnt work..I am 'down the shore " but will drive North Jersey if I have too..
Here is latest update my creatine is now 7.9 I am still very tired but not sick, still eating with no problem but he says my phosphorus and calcium levels are threw the roof and with my creatine he is afriad by next week I will get real sick.. I am going in tomorrow as a same day to get catheter put in (no I am not happy about this at all) and will begin dialysis on Mon am.. I am also having the fistula put in on Fri ..Of course the dr who is to do the manipulation on pd catheter STILL has not called me back over a week of calling so i am beyone po'ed about that..
I know I need to do this doesnt mean I want to thank you so much though for all the advice I will update as I move through this journey

[monrein]

I'll be thinking about you as you go through this 7p and I hope that before too long you'll  start to notice a difference in how you feel.  Of course you don't want to do it but I also hope that it won't be as bad as you're fearing.

[Hemodoc]

Dear 7Piglets,

I suspect that the reason the surgeon does not want to go in is due to your low GFR which I am sure is also manifested with electrolyte abnormalities.  If you wish to undergo PD, then you probably have no option but to have the cath inserted.  It is your body and I always go with the most talented people that I know for any procedure.  Usually, vascular surgeons are the best at placing catheters.

Further, if I ever loose my fistula and need a catheter placed, I will go on PD temporarily to avoid long term cath placement which has many complications that can occur.  I would further consider the internal jugular first before using a subclavian catheter due to the potential of not being able to get a viable fistula on that side if the catheter damages the subclavian vein.  Since PD may have to be stopped temporarily, a fistula is the best access with the fewest complications in the short and long run so you should learn much about keeping a fistula healthy.

Further, for those that are CKD 5 and not on a renal replacement therapy yet, heart arrhythmias are the largest cause of death due to electrolyte abnormalities.  With a GFR of 6, that is way down the scale as far as when many start renal replacement therapy.  Actually, a fistula should be considered when the GFR is between 20-25 so that it has time to mature. Yes, as others have stated, it could be dangerous to wait any longer on starting hemodialysis at this time.  As always, anything that you read on this blog should always be discussed with your own health care team since they have all of your information and know your case, yet you can learn much from this site as well as Home Central dialysis, the Kidney School and Bill Peckham, Dialysis at the sharp end of the needle, which has much wonderful information on his site with a fantastic set of links. Perhaps doing your homework now and learning more about Fistula First, optimal hemodialysis, PD at home and so many other topics.

Lastly, I would strongly recommend mastering the basics of CKD 5 and the different renal replacement options.  There are risks and benefits of each.  I have had cancer as well and that places my choice with daily dialysis since there is a 9% risk of cancer from renal transplant.  With seven little piglets, PD at home would give you the greatest degree of independence.  If PD is what you want, get a good surgeon to do the right job after your renal status is stabilized with hemodialysis.