What do I do???????

[lola]

So yesterday we went and met with the surgeon about Otto getting a Fistula. Well Otto wanted to wait to see what is labs looked like b-4 we schedule. His BP was 179/107  he's on 3 bp meds, his weight was up 5lbs but we have to buy smaller jeans because the smaller size he just got in Dec are falling down, it's water weight in his legs. Well his Creatine is 5.3 now and when I asked about calling today to get on the Dr's surgery list he bit my head off. Otto has known since January this was coming, he says he doesn't want to talk about it anymore and he'll let me know when he wants to do it. I know he's scared I am too we've done Dialysis b-4 and it was a nightmare. I'm scared he's gonna wait to long and his fistula won't mature in time. What do I do? THANKS

[glitter]

if he waits too long and the fistula doesn't mature, then couldn't he get a temporary access? My husband had one in his neck for 10 monthes, and stauffenberg had one the entire time he was on dialysis. I hope it goes easier for him this time, maybe it will make him feel better, I hope so.

[RichardMEL]

Yes he could get a catheter in his neck or someplace to use if the fistula isn't mature enough but...

Really this is a tough situation... pushing him about it will more likely than not send him further away... and the worry is that the fistula is by far the BEST form of access, and you can have all kinds of problems with catheters that could be avoided with the surgery.

Fistula surgery is actually very easy... I had next to no pain with mine and I was out the next morning and honestly it was way easier than I thought it would be. Yes it is scary and the notion of dialysis sucks... but given that you both have known this was coming.... it takes time to get used to I know... but it's something Otto needs to accept... for his own wellbeing.

I am not sure how best to proceed on this since nagging him is likely going to push him further away... going into denial about it though (as in "I don't want to talk about it") is not doing him any favours either. I wonder if scheduling an appointment with the Neph might help to go through the very clear benefits of the fistula might help and reassuring him about how easy the surgery is? Perhaps stuff coming from someone other than you might help more than having him feel like it's always you nagging him to get it done?

I'm not sure but I wish you luck.. this can't be easy on you - I know you just want the best for him. Deep down I am sure he knows this too despite ripping your head off....

*hugs*

[willieandwinnie]

lola, I'm so sorry Otto can have a temporary access put in his neck or chest. Len had one for a year, and finally had a graph put in because fistula would never take. Unforuntely it sounds like Otto is going to wait until he is in a emergency situation before he makes a decision (can you really blame him). I'm like you (caregiver) and I have been told more then one time to shut-up, I know it's hard lola, but he is a grown man and has been down this road before. I'll be thinking of you and saying a prayer. Take Care.

[okarol]

When people ask Jenna how she faced dialysis she says, "My way of dealing with it is not dealing with it."
Sometimes it's just too much to cope with. Try not to worry. A chest catheter can work when immediate access is required.
  Take care lola!

[jbeany]

Lola, he can, as everyone else has pointed out, get a cath quickly.  The surgery is not a necessity for him to start.  I know you are worried about him, but please don't push.  Sometimes the thought is worse than actually doing the surgery.  Give him some time to mentally prepare for it.

[paris]

Lola, You are in a tough position. As the patient, I will tell you how I deal with changes.  I need to process the information myself first before I can talk about it, even with family.  The more they say "did you call" "what are you going to do", the more I withdraw and pull inward.  I believe it all has to do with control.  We keep losing control of our lives and each new turn of events reminds us that we aren't who we use to be.  I always come around and make good choices, but I need it to be me who makes the decisions.  Again, for me it is control.  I know it is hard to sit back.  As women, we like to take care of everything.   Take the weekend to enjoy Easter and the kids.  Next week things will be better.  He knows what he has to do, but may need a little breathing room to come to terms with reality.   I hate reality somedays!!

[The Wife]

For some reason, my first post went into lala land.  Anyway....

Since you've already been given a lot of great advice, I'll just add this:

Take a deep breath, let go, and allow Otto to make the choice.

[lola]

Thanks everyone I truly don't know what I would do without my IHD "family". Otto has been in bed all day and that is sooooo not Otto.

[paris]

Lola, I keep thinking about you and Otto.  I relate so much to his reaction.  My husband gets very worried when I am in bed. I don't stay in bed even when I am really sick.  But every once in awhile, it seems like the best place to be.  Hopefully, with Easter and your kids, he will enjoy the weekend.  Give him lots of love and a little space.  You are doing a great job keeping everything together, working and raising you kids.  It isn't an easy life.   You have my admiration

[Jill D.]

Lola, You are in a tough position. As the patient, I will tell you how I deal with changes.  I need to process the information myself first before I can talk about it, even with family.  The more they say "did you call" "what are you going to do", the more I withdraw and pull inward.  I believe it all has to do with control.  We keep losing control of our lives and each new turn of events reminds us that we aren't who we use to be.  I always come around and make good choices, but I need it to be me who makes the decisions.  Again, for me it is control.  I know it is hard to sit back.  As women, we like to take care of everything.   Take the weekend to enjoy Easter and the kids.  Next week things will be better.  He knows what he has to do, but may need a little breathing room to come to terms with reality.   I hate reality somedays!!

Paris - I am exactly like you when dealing with health related changes. There have been many times that I did not share health changes even with my mom because I wasn't totally sure that she would keep the info to herself. Don't get me wrong - she is a wonderful mom and wonderful person but I don't think she could handle the thought of what was happening to me. I would have to specifically tell her not to share information. My parents are very involved with a bible study group and early on I found out they had "shared" info as part of their prayer concerns. I know they meant well, but I felt that it was (and is) my decision on who I tell and what info I share with people. And I do not like to share any info until I have had a chance to absorb info and "accept" in my mind the situation.  I was mortified when my sister and I went through the first round of evaluations and read about it in our church newsletter and program! Most people had no idea about my ESRD and that was how I wanted it. I had (and have) a very full life and did not want so much focus on my ESRD (and all of the crazy questions that people come up with,) There are still people at our church that only ask questions about my health when they see me - nothing about my kids, my work, the weather - it kinda bugs me, but when people ask "how ARE you?" I usually smile and say "Fine! How are you?"
Maybe I'm selfish, but my feeling is that my health info is my personal business and it is my decision what I share. Many times I feel like I am in the childhood telephone game - someone shares info about me, and the info makes the rounds and each time it's a little farther from the truth, so by the time it gets back to me it is so far from the truth that I want to scream!!!!
Thanks for allowing me to rant!!!    

[Sluff]

Tell Otto I'm on my way....no j/k. I know your really stressed right now and you are scared but I would bet if you back off, and just let him know you love him and that you are concerned he will make the right decision, and as the others said he could get temporary access if it comes down to the last minute. Know we are here for you and that we all care. 

[kellyt]

    

[Ang]

just  my worth.

get  the  fistula  surgery  done,  that  way  he  has  a  fistula  that  should  be  good  to  use  after  6  weeks,if  life  happens  to  go  south  after  that  you  don't  have  to  contemplate emergency  this  that  or  the  other, your  ready  to  go.
my  motto  is  "information  is  power."
good  luck  with  it  all






EDITED:Fixed smiley tag error-kitkatz,moderator

[rose1999]

I do feel for you, as a fellow carer I know how very hard it is to watch and to want the best for your loved one.  But at the end of the day all you can do is respet Otto's decision and be there for him - which I know is what you are doing.  If all else fails (as others have said) he can have an emergency catheter while the fistula matures, but if you give him a bit of time to think about it he may well decide to get it done sooner rather than later.  Thinking of you both and wishing you the best 

[boxman55]

I don't know, but there isn't to many diseases that you have to prepare for with surgery before you actually start treatment. So it is very easy to have a denial attitude. He has been through this before he knows the road so I think just let him have his way for now. Easy for me to say tough for you to hear but sometimes that is the way it has to go.. Boxman

Stay strong you are very special

[petey]

I agree with Rose and Boxman.  Let Otto come to terms with it in his own way and his own time.  (I know that's hard to do -- I'm a caregiver, too).  Stay strong!

[annabanana]

Otto sounds just like my husband Randy. When things get too scary, I quietly take over. For example, the first time his symptoms became really bad I asked him to call the doctor many times. He, of course, would not, and would bite my head off. After a few weeks I called the doc myself, made an appt., walked into the bedroom and gently asked Randy if "Monday at 3 pm" was good for him to see the doc. He actually went to that appt.! This happened last summer and I've had to do this a few more times since then.

All these issues of control and fear and denial are so real. It puts people in a place where they can't move. So they get in bed and pray for tomorrow to come. Sometimes it's good to have someone who can take over.
 

[del]

Give him some time to absorb it all lola.  If he does have to do dialysis they can very quickly put in an access. Even if he haves the fistula done now it may not be ready to use when he needs it.  Don't push too hard.  It'll only make things worse I think. Let life go on as normal for a while.  When he starts to feel sick he won't be long before he asks for a doctors appt.  Take care . 

[2_DallasCowboys]

Hi, Lola,

Emergency access can be put in place and dialysis done
imeediately afterward.  That is what happened to my
husband.  We had no idea he was in kidney failure- we
wound up going to the ER rite from damn Dr's office-
and they put in the access and dialized Les  immediately.
I am only saying this is what they can do, if necessary.
My husband had a permacath for almost 2 yrs and just
this month has begun using his fistula.
If your hubby is getting nervous talking about all this,
perhaps try letting it go for a while (I do know how hard
that can be)  See if a few days without mentioning it
will calm him down a bit about the subject.
Good Luck and sending a prayer your way!

Anne

[aharris2]

(alene writing)

Lola, Give him space and be there for him. Love him. Otto knows, he's been through this before. He will either make the arrangements for surgery or he won't. It's his choice.

I know it is tough 

(should he wait to the point that he needs a catheter, Ro says go for the chest catheter (he's had one for three years now, changed out last month in the same tunnel), he says the neck catheter (his first access, 5 1/2 years) ago is nasty)

[lola]

Thanks everyone Otto was really wanting a catheter but the DR has MAJOR concerns because of our lifestyle (dirtbiking and being on the river) he'd get an infection. I have promised no more talk about health. He has an appt with his Neph on the 3rd and I'm not going a 1st in 18 years but I'm thinking with me not there he'll open up to his Dr since he really likes him.

[st789]

Sounds very philosophical Okarol "not dealing with it is like dealing with it".

On the other hand, Information does help.  If it is too much leave it up to the one up there to arrange things good or bad.

[Sluff]

Thanks everyone Otto was really wanting a catheter but the DR has MAJOR concerns because of our lifestyle (dirtbiking and being on the river) he'd get an infection. I have promised no more talk about health. He has an appt with his Neph on the 3rd and I'm not going a 1st in 18 years but I'm thinking with me not there he'll open up to his Dr since he really likes him.

Catheter gives the impression that it is not permanent. That could be the road block. Good choice Lola, I hope things come out for the best.    Tell him I said Hello.

[okarol]

When people ask Jenna how she faced dialysis she says, "My way of dealing with it is not dealing with it."

Sounds very philosophical Okarol "not dealing with it is like dealing with it".

On the other hand, Information does help.  If it is too much leave it up to the one up there to arrange things good or bad.

At 18 years old, she was in denial about the kidney failure, and if she could have run away from it, I am sure she would have. So I gathered the info and resources and Jenna was a willing participant, she just couldn't cope with all the stuff you need to learn, and the decisions you have to make. Having parents who guided and supported her was a relief. She tells us all the time how grateful she is.