after my rant, heres update on DH new fistula use

[The Noob]

so, he comes home. says they used his fistula friday for the first time. he said during this they taped his arm down to the chair. i asked him if he ok'd it, he said yea cause he wanted to keep moving his arm. why? i say..he says because when they were doing it, it was painful. by the time he got home his site was all swollen and bruised and hard. nasty looking today. i won't have to say a thing because he is not a happy camper and will have no problem giving them the what-for.
oh i can hear the surgeon, man you think a patient or caregiver can rant? you ought to hear this surgeon. love him dearly! 

[lmunchkin]

Ghoosh, Noob, I bet they are both upset!  It ashame that this occurs at all, but it does.  I infiltrated my husbands fistula, and I felt awful about it!  But I never claimed I was the expert, but these clinics, well they should all know how to do it!  Unfortunately, that's not the case.

Maybe next time will be better, I pray.  So sorry he is being put through this!

lmunchkin

[jbeany]

Tape his arm down?  For heavens sake!  The needles, done correctly, are painful, but not enough to need restraints if you are an adult and not needle-phobic!

[The Noob]

ok, DH went back monday, told them he wanted to rest his fistula, they ignored him, told him the swelling/bruise/knot was normal, said they did not infiltrate..and used the site anyway. now it is way more swollen/bruised. downright painful and stiff.
my question (his too) is this normal?

he goes back in this morning. i asked him what he wants to do? he says he wants to rest it. but unsure if they will listen. i told him to place his hand over the site when they come at him and JUST SAY NO.
he will do this, thats his part. now, my part is i will call the clinic and tell them to rest it till i can get word from the surgeon. which i will call this morning. infiltration, from what the other patients/family says seems to be common here.

we are both concerned about this. he told them he doesn't want his site ruined or messed up. they mumbled "we won't". i can be diplomatic. but i want to hear from doc first.
i told him to tell them: "don't make my wife have to come down here!"
 

also, has a senior paramedic and on a special IV team for the state for 26 years, he is not needle phobic. i encouraged him to start with the self cannulation.

[The Noob]

well what do ya know?
surgeons nurse called back, doc said "rest it for 1-2 weeks and they shouldn't have used it a second/third time once it was infiltrated the first time"..

love this doc! he's going to call and lean some muscle on tx team also to get moving. God Bless Him!

man i have to get off here and finish chores. texted the DH all this. can see him taking deep breaths of relief.

[lmunchkin]

So Noob, does he have a perm cath or some other catheter to use?

lmunch   

[looneytunes]

Way to go Noob!   

[The Noob]

well poot.
the same day this all happened, DH calls me from clinic, says they want him to drive himself to toledo (1 hour) go to ER and have the perma cath replaced as it was clotted and didn't work. he did get almost 3kilos off even so.

he calls me upset as he is trying to explaint to them that he will have no one to drive him home, that he is weak and doesn't feel like going to toledo by himself, and last time we did this we were at the hospital 19 hours.

so i call clinic to get scoop. they want us to go to toledo hospital at 7 am, hurry to get it done (doesn't happen there) then rush back to have D at clinic by 10:30 am.

i said to wait and i will contact his surgeon. did this, surgeon set it up for this morning at 7:30 am check in, 8:30 procedure. however, we will go to Univ of Toledo to the cath lab where he practices. He is also a professor there.

its pouring rain, we leave at 5:15 am. my headlights are barely working (i spray them with W-D to clear them, works for a day or 2). drive 35mph due to all the above, get there just at 7:30 to check in.
much nicer hospital, this is where they do transplant. i'm a doofas, i thought it was just a college. too much stress through all this, brain fart..LOL

anyway, it went very well. staff was exceptional to both of us, very clean everywhere. i was so relieved i didn't even go back to prep with him. didn't have to stand guard. had a mocha latte at the coffee bar in the hall. i went back 15 mins later. surgeon comes in, not rushed. talks to us, has 3 residents who were equally terrific!
Surgeon reads letter i show him from TX team, and listens patiently to my complaints, says he will walk over there (next door in same building) and put the heat on them to get moving.
they take him back, he stays awake, Doc talks to him and residents all the way through. DH very content, we leave about 20 mins after procedure. He is feeling good, everyone is awesome. we both nearly cried with relief.

now what Doc said about fistual: it was obviously infiltrated several times, they never should have used it after the first time. (he does good work and must have frustrated him), no one is to touch for a min 2 weeks, maybe 3-4 because of the damage.
in addition to this, he didn't know why other hospital put chest port in where/how they did, he says they haven't used that technique in a long time. also, it was showing signs of infection. he had the nurse give a stack of Tegaderm for the clinic to use instead of the standard gauze and tape. i will also see where i can get some more.

he has a follow/up in 2 weeks.
we are so close to the transplant! i am going to be taking him to the clinic from now on, watching his diet better because he likes to stop for hot dogs when alone. so close! don't want infection or any other issue to get in the way. it could be scheduled in the next weeks or so.

i don't mind, i have worked just as hard as everyone else to get to this point. i'm determined to see it through.

when we go in the morning, i have a hand written letter to put in his file with instructions. nothing nasty, just the directions. i'll be nice but firm. DH potassium up to 5.9, so he was told to take kaoxolate tonight. more scripts to pick up tomorrow.

so, we are at our other place all snug as a bug. i'm sorry to give you the long of it, but we were so pleased with the day. Doc said he could wait till tomorrow for D, and it was too late anyway to get there on time.

just wanted to brag up the Doc and Staff and Facility!

  to all of you, and Prayers for you all too..

[cattlekid]

noob, you can get Tegaderm at CVS if you have them in your area.  Be aware, they are pricey!

[rocker]

For Tegaderm, check Amazon.  Our FA bought a box at the local medical supply place with her "50% professional discount", I think it was about $130.  I got the same box from Amazon for something like $30.  Tegaderm is definitely the way to go for a cath.  We changed his once a week or so.  You can change it at home if you have the proper supplies.  Be very very sterile when you change the dressing (green soap, mask, gloves, alcohol, iodine) and tell the clinic that you will change it at home and they don't need to.  Check with your doctor to see if it's ok to do this and for additional instructions.

Hopefully, his precious fistula will recover quickly, though, and this will be short-term for you.

We went through almost exactly the same thing with DH's first fistula.

  - rocker

[The Noob]

ok, i think theres a CVS where he goes to clinic? small town. maybe not.
now this tegaderm will be for his chest port, so they will put it on after treatment if they don't give me a hard time, and replace after each session. we used tegaderm on the rig, good stuff.
well you guys, we are so close, i will look on amazon/cva and see what we can find.

its early morn coffee time. kitty has her eyes open and mother is back to nursing. thank goodness!
thank you all for chiming in! the pots on if ya want a cup.

[sullidog]

got my tegaderm from amazon, comes in different quanaties per box, and techs not listening to the patient? I say typical typical typical!

[The Noob]

sullidog:  man so true.