I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: lola on March 21, 2008, 10:02:22 AM
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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
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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.
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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*
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lola, I'm so sorry :cuddle; 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.
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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.
:cuddle; Take care lola!
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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.
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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!! :cuddle;
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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. :grouphug;
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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. :banghead;
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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 :bow; :cuddle;
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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!! :cuddle;
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!!! :rant; :rant; :secret; :banghead;
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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. :grouphug;
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:grouphug; :grouphug;
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just my :twocents; 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 :thumbup;
EDITED:Fixed smiley tag error-kitkatz,moderator
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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 :grouphug;
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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
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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!
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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.
:grouphug;
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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 . :basket:
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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
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(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 :grouphug;
(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)
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Thanks everyone :cuddle; 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.
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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.
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Thanks everyone :cuddle; 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. :grouphug; Tell him I said Hello.
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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.
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Well as hard as it's been I have kept my mouth shut, BUT Otto's brother finally called today and told him he's being a baby and schedule the surgery. I still am keeping quite.
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lola, I can only send you a big :grouphug;
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:big hug: xoxoxox
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Hang in there, we're all thinking of you :grouphug;
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I don't know, but there isn't to many diseases that you have to prepare for with surgery before you actually start treatment....
Boxman, this really sums it up for the fear that people have. Not sure if I would call it fear or anxiety (same thing?). I think the time in advance you have to prepare is also hard to accept because in some cases you just don't feel sick yet. Having to convince someone it is in their best interest is difficult to say the least. My prayers are with you lola.
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Lola - Sounds like Otto is very active, therefore I would push for him getting the fistula. With the catheter he has to limit any kind of sweating or major activity because the catheter and site is more likely to get infected. Rob had 5 fistulas because he was active and sweat a lot, so he got more infections due to this, even one that landed him in the hospital for a week.
He will need a good 5 months for the fistula to mature, so push for it now. It sucks, it took Rob a long time to get up the courage to deal with dialysis and after the catheter, he wished he had one put in sooner.
Good luck, I know this is hard for all of you!! :big hug:
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Lola - Sounds like Otto is very active, therefore I would push for him getting the fistula. With the catheter he has to limit any kind of sweating or major activity because the catheter and site is more likely to get infected. Rob had 5 fistulas because he was active and sweat a lot, so he got more infections due to this, even one that landed him in the hospital for a week.
He will need a good 5 months for the fistula to mature, so push for it now. It sucks, it took Rob a long time to get up the courage to deal with dialysis and after the catheter, he wished he had one put in sooner.
Good luck, I know this is hard for all of you!! :big hug:
I wish I could push but we are on a "time out". The kids and I have been busy tearing up the basement, I'm going to build a bedroom for us so Otto can have a room for Dialysis. I had hoped his brother getting on him would have gotten him on the ball but he's still just mopping around. After his appt with his Neph next week if things are still this way :boxing; this is really affecting our kids. There not use to seeing there Dad like this.
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I have a freind who always says "time to make a gratitude list." It's her way of reminding me that no matter the challenges I face, I still have a great deal to be thankful for. I usually flip her the bird (hehehe) then I make the damn list, and I feel better. I doubt Otto is in any mood to make such a list but if you and the kids make a grateful list and stick it on the fridge, it kind of brings home the point.
:cuddle;
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Otto finally talked :bandance; he's sooooo scared about having problems with Dialysis like b-4 and also seeing 2 of his brothers have problems. He has been struggling with not wanting to start but also not wanting to break a promise to me to at least try. He is planning to call and schedule the fistula surgery on Monday. Thanks so much you guys for your words of wisdom during my week from HELL.
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:yahoo; That's great, so glad it's working out.
:bunny:
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It is hard when you love them but you want to kill them at the same time! Hubbys!
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:clap; :clap; Otto is scheduled to have his fistula placed April 18th. Thanks everyone for the support :big hug:
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Good for him. We are here for you both. :grouphug;
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Whew. You must be so relieved. Backing off was probably the most difficult thing! You are a hero.
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:2thumbsup; Good, hope it goes well!
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Lola.. You holding back like that took a lot out of you I'm sure...I'm glad you listened to those that have the experience either thru their own significant others or opening up to you about themselves...
I could offer no advice.. but you get a big hug for hanging in there and being strong..
Hug those kids too...they've been stressed.. :grouphug;
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Well we just got home Otto did well considering his surgery was scheduled at 7:30 but didn't get started till 12:00. We also found out that Otto's Dr is very upset over donors being turned away because of antibodies when 5 years ago they didn't even really care about them. So the transplant team wanted to look closers at me since we were a 5/6 antgene match but our Dr said No since we have since found out about Dani. The transplant team is going to re-evaluate the other donor who were only turned away due to antibodies and look at them further so keep your fingers crossed
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Everything's crossed for both of you Lola (fingers, toes, eyes, legs and arms). :grouphug;
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OK so it's been 2 weeks since Otto's fistula was done, how long before we notice anything? When I feel it I only feel a pulse (thank god) but nothing else.
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Jenna's first fistula never buzzed or anything, and after 3 weeks they decided it needed to be done over. The second one had a strong buzz immediately. Then it took 6 months to get big enough to use.
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LL's fistuala also buzzed immediately. Maybe you should let the doctor know Otto's isn't?
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Lola I think you should let the doc know immediately. Both of my fistulas started buzzing right away and you couldn't miss it. Best of luck.
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He has appt Thursday, thanks
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OK so after Otto feeling like sh@# all day my mom who's an RN came over and took his BP it was 198/125, called transplant center they said to get to the ER. Of course it came down to 153/109 then 140/97 :banghead; he had labs last friday but they wanted to re-do them and his creatine last week was 4.8 tonight 5.4 BUT his hemoglobein last week was 9.7 tonight 8.1 ??? he had his shot but it's not working??? He has appt on thursday. The DR also looked at Otto's fistula that was placed 2weeks ago and no "thrill" he said there should be a good one by now so needless to say Otto is a little >:(
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Understandably so Otto. Hang in there Lola. Why does this crap have to be so complicated? I feel for you Otto.
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Ohhh Lola....I know how hard this is. Big hugs to you. :grouphug;
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:cuddle; Sorry lola
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So sorry you're both going through this. Lord knows it's complex enough even when things go perfectly smoothly. :grouphug;
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We just got home we went to the Transplant center and the news went from bad to worse. The Kidney Dr ordered repeat labs he wanted to see what they looked like from Saturday, well his creatine has gone from 5.4 to 6.9. He in the last few days has started to get itchy his mouth is super dry and now he can't poop, also his breath has gotten really weird smelling. The Dr said his kidney is done. Then the Fistula Dr came in to say the fistula is a no go so there putting him in the hospital Monday am and they are putting in a catherder and an upper arm fistula and he will have his first treatment Monday night and his 2nd Tuesday and if all goes well he can come home and begin his life on dialysis :puke;. We are a little overwhelmed Otto told the Dr we need to take him out back and shoot him.
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Holy crap, Amy. I am so sorry. You have so much on your plate right now. Please know we are all behind you 100%.
Much love. . . .V
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Tell Otto to hang in there. Dialysis is a piece of cake and he will feel much better.
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Lola, I just read your caringbridge site and was so sorry to hear how things are going. I know Otto is very disappointed. I'll keep praying for all of you during the next week. You have so much going on, and as the wife and mother, you are holding everyone together. :cuddle; I keep hoping a donor will step forward for Otto. Sending lots of love to your family :grouphug;
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Well I just got home, Otto had the cathider and upper arm fistula done today. They told me he will be ALOT more sore then most I guess when he woke up he went crazy and pulled out his breathing tube and tried to leave the hospital, it took many people to hold him done as he tried to fight them :boxing;. He is not doing dialysis tonight he has a little fever and now he's not coming home tommorrow they said maybe Wendsday or Thursday.
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PS sorry I forgot to do spell check and I didn't even spell Otto correctly :oops;
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Sorry to hear about his reaction but he is scared and he has a right to feel that way. Hopefully he will heal quickly and everything will work well and he will feel better soon. :grouphug; I will keep your family in my prayers.
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:grouphug; I am sorry Otto is having such a bad time. I hope the next few days go better for all of you :grouphug;
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I'm sorry, lola. This sounds awfully hard. I hope things start getting better very soon. I'm sending warm thoughts and hugs your way. :cuddle; :grouphug; :cuddle; :grouphug;
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Keep the pain pills in him. I still vividly remember the terrible pain I had after my fistula surgery. It lasted about a week.
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Just want to say I'm thinking of you Lola and Otto.
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Otto is feeling much better pain wise. They did a "mini' session yesterday so that his body gets use to dialysis. Today he will go for 4 hrs and then get to come home :yahoo; He switched rooms last night because he has not slept yet due to his roomate clearing his throat every 3 minutes :Kit n Stik; and I'm so not kidding but the guy sure could sleep just not Otto, I'm going down in a little bit so I'm praying he got a good night's sleep. OMG the buzz is HUGE!!!! The kids came down last night and thought it was the coolest thing. Thanks for everything you guys these last couple of months have been so hard and you have all offered so much support :thx; :grouphug; :guitar:
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We love you and Otto, Lola! You have gone through a lot in the past weeks. Hoping all goes well now. :grouphug;
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I am happy he's improved and hope things get better each day lola.
Buzz is good! Yay! :2thumbsup;
Take care - we love you guys!
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so glad to hear otto is feeling a bit better. they redid my fistula in january so i know exactly how he feels. it will keep getting better. just keep the pain pills coming (something i had to learn, i hate taking them) he will probably find dialysis isn't as bad as he remembers, especially when he starts feeling better. good luck on the transplant hunt.
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hope and pray things settle down for you all now. :grouphug;
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I'm so glad things are feeling a bit better for Otto. What a hard time he's been having. Praying that things will continue to look up. :grouphug;
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Otto's Home :bandance; :yahoo; he had his 1st true dialysis today and everything went pretty well. He's getting so skinny makes me think I should go on a diet(I said think not do hehehe). xoxoxo Amy
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So glad to hear that Lola. Continued success. :clap;