Getting Worried

[ODAT]

Just talked to my sister. She and mom were talking about the flurry of appointments coming up starting next week. On 12/11 I take her to the vascular surgeon to discuss fistula placement. On 12/14 she has the overnight for sleep apnea. Other appts in between and phone calls to docs about her upcoming knee replacement on 2/12 - stopping Plavix temporarily for surgery.

Well, Cathy said mom was shaking her head 'no' all during the talk about putting in the fistula and how we were going to schedule it after her knee replacement. She continued shaking her head no when Cathy talked about 'we know you don't want it, but maybe your numbers will stay low and you won't have to start dialysis too soon.' So Cathy said, 'mom, you know what will happen eventually if you don't start dialysis.' She said mom just turned up her hands. All that time she didn't 'say' anything.

I don't know what to do if at the vascular appt mom says she doesn't want the fistula.

[okarol]

She can get the chest catheter. It works fine and can be put in on a last minute basis. Sometimes you just have to wait til the person is ready.
It sounds like a lot for your mom to handle. I would focus on one thing, if I were her.

[rose1999]

Try not to worry (easier said than done I know). It sounds as if it's all just too much for her to cope with at once, but hopefully as each appointment passes she can put that behind her and move on to the next one.  My Dad can't have a fistula and we worried about that, but his chest catheter was put in one day under a local and he was using it the next, so not having a fistula isn't the end of the world. Please know that we are all thinking of you and you're not alone, this is a great forum for getting support.  Good luck to you and your Mum and sister.
Rose 

[ODAT]

You both have great points. I'm not sure if she can have a fistula either due to her veins. She had the mapping done a few months ago and we haven't discussed it yet. I should look up how the chest catheter works. Does it have the same number of needles as a fistula? It may come down to doing nothing until it gets to the point it has to be done. I know I can accept my mom's decision, just have to convince my sister to also. They are very close. Cathy is over there at least three or four times a week and calls her every day. I call mom every day too but she lives 30 min away. She's only 5 min away from Cath.

I'll make sure we discuss at the vascular surgeon what will happen if she waits. We have to let her know all angles so she can make an informed decision. That is my goal.

[KR Cincy]

If you have a good vascular surgeon, he'll explain all your access options: fistula, graft, and chest catheter - as well as the pros and cons of each (at least mine did and it helped clarify so much.)

There are no needles with the chest catheter...you have a couple of tubes that hang out of your chest and the dialysis machine is hooked up that way. It's a fairly simple procedure to install (they knock you out) but it has some serious drawbacks. It can get infected very easily, and the infection could get to your heart because that's close to where one end of the catheter sits. Also, the quality of dialysis isn't as strong as it is with a fistula...but considering your mom's state of mind, the catheter may be the right way to go to give her some peace.

[ODAT]

One concern about a chest catheter is that you cannot shower. Mom only has a shower. Her apartment is handicap accessible so she has a double-wide walk in shower (same level as floor with no molding even). Guess I'll have to just wait to see what happens at our appt next week. I'll let you know.

[KT0930]

I know it's not an ideal solution, but when I've had chest catheters in the past, I've done sponge baths instead of showers. I washed my hair in the kitchen sink with someone helping me and a thick towel wrapped around my shoulders.

It can get infected very easily, and the infection could get to your heart because that's close to where one end of the catheter sits.

My understanding is that one end is actually IN your heart.

[okarol]

One concern about a chest catheter is that you cannot shower. Mom only has a shower. Her apartment is handicap accessible so she has a double-wide walk in shower (same level as floor with no molding even). Guess I'll have to just wait to see what happens at our appt next week. I'll let you know.

A handicap shower stool and a hose-type shower wand will work fine. Jenna had a tunnel catheter for 9 months while her fistula matured. Washed her hair at the local salon or in the sink.

[Black]

I can relate to your situation because my 81 year old mother just went through breast cancer diagnosis, surgery, treatment, and 33 radiation treatments.  She was overwhelmed.

It started with a breast ultrasound, biopsy, then pelvic exam to rule out other cancers, full body CT scan for the same reason, a discussion of the alternative treatments, hormones prescribed to hopefully prevent recurrence, osteoporosis meds to prevent the thinning bone the hormones might cause, treatment for anemia and for the radiation burns.  She saw a surgeon, an OB-GYN, an oncologist, several assistants, and numerous techs.  She was overwhelmed by all of the visits, blood draws, office visits, tests, meds, treatments and the numerous new medical people she saw in just a few weeks, and especially the decisions the was asked to make in such a short period of time.

My sister handled it all.  She repeatedly reassured my mom that she would keep up with all of the appointments and call her the night before to remind her of every appointment, and all she had to do was show up at the door ready to go.  My sister insisted that she be added to every medical record so she could have all of my mom's information and participate in every visit, every decision, and every procedure.  No one was allowed to pressure her, and everyone was required to speak loudly and clearly and explain everything in detail.  Most of her medical team was used to dealing with geriatric patients and that was a blessing.  My sister stocked her freezer with ready to prepare foods and made sure all of her prescriptions were refilled and picked up, and once a week cleaned her house and restocked everything she and my dad needed.

Mom was diagnosed in late June, and it's all behind her now and she's doing fine.  But, the path between June and now was not easy and took a lot of time and effort by my sister (and all of my mother's medical team).  My mom still needs reassurance that taking meds for diabetes, thyroid, blood pressure, osteoporosis, and hormones is not a lot of meds at age 81.  She is amazed by how good she feels and how her strenght and endurance are coming back.

I know your mom's situation is different, but I hope your sister is able to do as well with your mom.  Love and patience work wonders.  My thoughts and prayers are with you all. 

[glitter]

http://www.couriermedonline.com/general-cd-1000-3.html

these are the bandages my husbands used so he could shower once or twice a week when he had his neck catheter- if the dialysis center or your neph orders them medicare B will pay for them. We would also buy the really large tagederm bandage and put that over this for absolute sealing. Medical supply stores carry both.

[lola]

Otto had a chest catheter and still was able to shower

[rose1999]

http://www.couriermedonline.com/general-cd-1000-3.html

these are the bandages my husbands used so he could shower once or twice a week when he had his neck catheter- if the dialysis center or your neph orders them medicare B will pay for them. We would also buy the really large tagederm bandage and put that over this for absolute sealing. Medical supply stores carry both.

Does anyone know if these are available in the UK?  They would  make life easier for  my Dad as he struggles to sponge bath at the moment. His catheter does not go into his heart, in fact it's on the other side of his chest and it was put in under a local, I'm not sure if anything would actually go into the heart but someone may know different.  Anyway your Mum should be reassured that there are a number of possibilities.
I hope it all goes well, please let us know how you get on - we are all thinking of you.

Black - your sister is a marvel, I wish I has someone like her to help me. Treasure her (I'm sure you do).

Rose

[thegrammalady]

Otto had a chest catheter and still was able to shower

with a chest catheter they tell you not to shower, however i do anyway and have for over a year with no problem. i just don't tell my doctor because he would panic. a catheter doesn't go into your heart, but very close to is, infection is a concern which is why you wear a mask whenever the caps are taken off the ends. that is really where the worry about infection comes from.

if you don't have dialysis or a transplant here's what will happen. when i finally went to the er, the doctor told me my toxin levels were so high i probably would have only lasted another 6 months.

i was extremely anemic, i couldn't stay awake for longer than 15 minutes or so and spent most of the day sleeping. i itched terribly from all the phosphors in my system. i threw up anytime i ate anything because i couldn't tolerate protine. if a person decides not to have dialysis, they try to make you comfortable while you wait for the inviable to happen. however i have no idea how they do that.  i know your mother is scared. she has the right to make whatever decision she makes. personally i think the fistula surgery and the needles (and i hate needles. I'm not a nurse or doctor because of needles) are preferable to the alternative.

[cev]

Richard had a chest cath for a little over a year.  And he showered we just made sure it was covered with a tagaderm, they will seal out the water  if the tagaderm starts to come off then get everything dry and cleaned and reseal.  Yes you must be very careful of infection, he got an infection (of course not from us but from the in-center) and was in the hospital 10 days.