out of my mind!

[The Noob]

so yesterday we went to see endo doc to set up colonoscopy. its monday and all had to be approved by nephro and clinic, who said no and wrote scripts for alternate meds. which i have to pick up. took hubby to clinic today as he had cardiologist appt afterward to sign clearance. he is fine now but a year ago his echo wasn't good, but it just showed fluid, which was eliviated by good dialysis. so the doc says yeah no prob will sign clearance. all his ekg showed today was right bundle branch block which he has had all his life. every other doc has said its a non issue, even transplant doc said so. all they wanted was ekg.
so we get home and this cardiologist calls says he has to have nuclear stress test before she will sign off.
two weeks out, 2 hours each way, 4-6 hr test.
this is on top of multiple appts, tests, procedures, and clinic 3 times a week. in addition to this doing it all here, you name it i do it. i am just about out of my mind.
both donors tested were matches. i am not against ruling out what needs fixed, but even tx clinic said it wasn't needed.
none of these places could care less about our long drives and that he only has cobra for 1 more year and they can cut it off at any time for any reason.
i have called his tx nurse several times with no return call. i really want to throw something.
we have no help with anything. only you here can truly understand.

[okarol]

  If these transplant centers would look at the WHOLE patient, from the beginning, make a plan of tests and a schedule you could live with, it would be so much easier. I hate to say it but sometimes I think these tests are just to run up $$ and not vital. It's a game they keep changing the rules of right in the middle.
 

[The Noob]

karol, i tell ya, patients are currency!

the transplant clinic says there is no need for all this stuff. all his ekg's for the last year are normal.
the stress test he had was when his pd cath wasn't placed right and he had 50lbs of fluid on.

lordy you are so right!!

ps: wanted to thank you for all those news stuff you look up. its got to be a job with what you already have to do. i have read a good bit of them too. we use a davita clinic and man its nothing like like the article on here about being "patient friendly".

thank you for letting me vent. i am still waiting on call back from tx nurse. will find out if they can heart and dental stuff there at hospital. if something don't give soon this old mule is gonna collapse.

[MooseMom]

It's really aggravating to have to be so beholden to the whims of a transplant clinic.  If you refuse a procedure, then they'll just yank you off the list, and that feels like blackmail.  And I think Okarol is right...some doc somewhere wants some extra cash to bugger off to the Caribbean, so your hubby has to have a silly test that everyone else says isn't necessary.

[The Noob]

no see, actually its the transplant clinic that said all this was not necessary! its the other docs away from the hospital, the independents, that want it done. the transplant docs/nurse said unnecessary.
this has been like this for 18, now 19 months. non-stop. no break. except for a few weeks at our other place a mile away. i still came back daily to do chores but at least i got to go to an AA meet every week.
i need to go to doc myself, my son also as he was dx with type 1 diabetes during all this. he seems to have beat it though but needs a check up. pediatrician said mis-dx. some days i am just done.

[paris]

If the transplant center doesn't need the nuclear stress tests to approve him, then it sounds like the cardiologist is doing it just for his records (and profit).    I couldn't pass the regular stress test the second year on the "list" so I did the nuclear one.  The transplant center was good with those results for a couple of years.    Years ago, a cardiologist insisted I need one or I could die.  This was pre diagnosis with the kidney issue. He focused on what he specialized in and didn't look at the entire picture.  I made the appointment, found out the cardiologist was part owner of the facility and I cancelled the appointment.  He had ordered three different heart tests but never caught the kidney stuff.   

Make sure the transplant center is good with what they have, then stay home and forget about it.   You need a break.   

Let us know what is decided.     

[looneytunes]

Aw Noob....it seems like everything is a moving target, doesn't it?  I feel your pain, sister.  If the tx team says they don't need it, can they go without the signed clearance? 

[The Noob]

i finally passed out watching x files with son. needed that sleep. hoping to get call back from tx nurse today. i will see if they have docs there who will do this, or rule it out not needed. hubby is not happy. he has been through enough. well want to kick myself as the day of the eval, they were doing other tests and wanted to do ekg too. we opted to have it done at cardiologist office as we had appt in a week to get clearance letter anyway.

if this can't be done we will look for other docs. to come this far and have constant roadblocks is sometimes more than bearable. if one more person says i won't have more put on me that i can stand, i am going to scream. easy for them to say who aren't doing it.

i tell you, if i knew what i know now and could go back, there is so much i'd do differently.
i'd stand my ground and go to the best facility, move closer to that one to save time and stress and travel, i'd have had him on the transplant list long before D. i'd have set up counseling for all. i'd have put my foot down about limits and boundaries from the get-go so it was survivable.
but as you all know, we can't go back. maybe share our journey with newbies to maybe help them?
all we kept hearing in the beginning was "it will get better/easier"..but no one can see the future.
the clinics we have been to all said "just get on D, get your transplant, and all will be well".
i do understand now why others go the home hemo route and not the transplant.
i'm just rambling. thanks for listening.

[Pam]

I can't believe how things are so different from one tx center to the next. My evaluation falls the same time as my yearly physical. I get my list of tests from the tx center and take them to my primary care Dr. He sets every thing up and this yr every thing was done in a week except for the colonostomy. 4-6 hrs for a nuclear stress test? That doesn't sound right. Mine took about 45 min.
I am thrilled that your son was misdiagnosed. You sure don't need the stress of that. My son has been type 1 since he was 7 yrs old and it is not an easy rd. for anyone.
Pam 

[Poppylicious]

If these transplant centers would look at the WHOLE patient, from the beginning, make a plan of tests and a schedule you could live with, it would be so much easier. I hate to say it but sometimes I think these tests are just to run up $$ and not vital. It's a game they keep changing the rules of right in the middle.
 

It would be interesting to know the difference between the UK and the US (and/or elsewhere!) when it comes to transplant evaluation.  I'm convinced that Blokey didn't have that many tests, but maybe he did.  It would also be interesting to know the difference between the countries when evaluating/testing potential donors.

*huggles* Noob.

[rsudock]

Hang in there Mrs. Noob! You are doing a great job and I'm sure your hubby appreciates you shouldering some of this process for him. Do what you can, when you can....I can identify with everything you feel! 


xo,
R

[The Noob]

thanks you all, sure need the support!
nuclear stress test itself is about 45 mins, but have to go from one floor to another and lots of waiting. hence the wait time. it could be done in 3 hrs but they say 4-6 just in case.

tx clinic says has to have it. colonoscopy is monday. kidney doc changed script from mirlax and gatorade to a big gallon of something else.
so, monday colonoscopy, tuesday follow up with surgeon on fistula. next week after the stress test. somewhere in all this get the ental done, tx nurse said she would talk with dentist to clairfy what was needed.
all goes well that should be it. the tx nurse also said, yes, they do single incision for donor. will have to make sure this is so.
D is still 3 times a week as well, and son and i have check up at our doc week and half or so. he has insurance but i don't. i think i am going to try to apply for medicaid just for myself. i've got to have some back up in case i need it and i need to have a few doc visits a year for my own medical.

its been horribly hot! feast or famine here. all we have is a window a/c. no rain in sight. trying to get this all done in a hot house, then a hot car..hubby has the a/c in truck he uses to go to D.
if i can just get through these next 2 weeks, maybe things will slow down a little for a respite?

racheal you are such a hoot! i am right on with your take of family. in mine, none of us would even think twice about doing what we can for eachother in this mess. not so on the other side. but i understand why its important not to have anyone make rash decisions.

my little laptop got too hot and the monitor went out. so i am sitting at this old dinosaur desk top. didn't fully realize what a convenience the laptop was. i got it over a year ago off ebay for 147$. worth every penny! 

[cattlekid]

I'm the veteran of multiple colonoscopies, having to drink the gallon each time so here are a few tips that I give everyone that I know who is doing the prep:

1.  I find it's easier to drink the prep out of a plastic cup.  Preferably one that you don't mind tossing in the recycling bin because you'll never want to see it again.

2.  Keep the prep ice cold.  Take it out of the fridge just in time to pour a glass, then back in the fridge it goes.

3.  I like having a second glass with a swig of Sprite, ginger ale or other clear beverage right there.  Kind of like having a beer and a shot LOL  Chug down the glass of prep, then immediately chase with a swig of the other beverage.  Keeps the taste of the prep out of your mouth.

4.  Figure out how many ounces of the prep you need to drink, and how many ounces your cup from step 1 holds.  Then figure out the hours you have to drink all this stuff.  I usually find it means I have to drink a glass every 15 minutes or so.  Then I set the timer between glasses.  Unfortunately, after the first few glasses, this may mean that someone is bringing the prep to you while you're on the throne, but that's the way it goes. 

5.  Invest in soft and fluffy TP.  You'll need it.

Good luck!

[rsudock]

Yes two weeks and hopefully things will settle down a bit! You can do it!! You are such a trooper and have a fighting spirit. Hang on, there is some light at the end of this tunnel! Hopefully you can get your laptop fixed...I always take mine to the hospital. I figured all the money I have pumped into my hospital the least they can do is hook me up with some free internet while I wait! lol

Keep me updated!!

xo,
R

[The Noob]

racheal:

ok, i got some ginger ale for him to chase it with. he starts the fluid at 6pm. so tired of hearing all about it every 5 mins!
(from him). how much more stressful can we make this??

[The Noob]

ok, we're done! ginger ale as a chaser, keep it cold, and time it, excellent, we did that and it worked great!!!!
10-15 trips to potty? who are they kidding? it was more like 20-25. all night. then we drive to hospital and check in. he is sick and weak. they don't want me to go to pre-op with him but i ignore them and say nope, he wants me there.
glad i did cause first thing they did was slap a BP cuff over the top of his fistula. i had them put a red bracelet marked with FISTULA on that wrist. just been there too many times and don't want another "we survived" t-shirt.

truly, that was the worst thing about the whole thing. i helped push stretcher to OR, and parked in waiting room with hot cocoa. he says they rolled him gently on his side and he doesn't remember anything until he woke up in post-op. he said he felt great! my bet is all the poop got rid of toxins and fluid, so he only needed 2 hrs of D.
big storms all day. but we went to eat right after he was done in D.
everything went fine. he had 2 small warts and 1 tiny pollyop (sp) and basically the doc cleaned him all out. all benign. good to go for 3 years.

the post op nurse ripped the tape off his arm causing him to bleed as skin was torn. then proceeds to put another big piece of tape over the IV site. i said nope, lets just put pressure.
i'm going to go have a chat with the admin about educating these nurses in dialysis patients 9and caregivers).

doc was awesome. 10 min procedure.
next is nuclear stress test and dental clearance. then we are done. this is next week.

thank god its over. couldn't hear one more poop report.

  to all of you warriors out there!