I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: justme15 on October 03, 2012, 04:59:51 PM
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I get my PD catheter placed tomorrow. I guess this means that I really have to start dialysis now. My transplant is giving up the ghost. My life is about to change drastically starting tomorrow. I'm nervous. and my husband doesn't seem to have a clue. perhaps his ignorance is bliss.
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good luck. :flower;
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im sure sorry that this is going to have to happen, but hopfully, you'll settle in and it wont be near as bad as your feeling about it :( I wish and pray you to do great tomorrow, and to have peace with this. and ps.... its so hard to carry this and be strong.. Hubby may have a 'clue' but too afraid to let his guard down... Hope he will kick in and give you more support in this time of need. :grouphug;
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Good luck justme15. For having to do something I hate, doing PD is the way to go (at least in my opinion). Let us know how you are doing.
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Oh, justme, I'm sitting here trying to imagine how you must be feeling...how I would be feeling....knowing those two things may not be the same. It makes my stomach hurt. I hope everything goes well for your procedure tomorrow and that while your life may change, I hope that PD will be successful and bearable. You know already that you will have plenty of support here on IHD.
Please please please keep us posted, OK? Thanks. :cuddle;
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I went from transplant to emergency hemo to PD. The adjustment is a little difficult. I needed therapy. But PD is bearable. I hope things go well for you. Are you going to get back on the list? I recently got my second transplant after 3 yrs of dialysis. Keep taking care of yourself.
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I hope the placement went well :bestwishes;
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Hope every thing goes well, is there a chance of another transplant?
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I have an appointment next week to get evaluated for PD. I am afraid, but based on information I have gathered on the site, the surgery is not too bad. Please keep us posted and let us know all is well. Would like to know how your traing goes as well.
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Best wishes.
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well, I've been home for about an hour now. doing well, except for some soreness right at the exit site. For a brief time I thought they may reschedule the surgery because i am getting over a cold. I have a very stuffy nose. However the anesthesiologist gave me some affrin nasal spray before the surgery and that helped tremendously! So overall, I'd say it was pretty uneventful! They want me to be off of work for a week! I have mixed feelings about that. But I guess since my job is relatively physical, I need to give myself some time. I have to see my nephrologist in about a week to flush it. not looking forward to that, but we'll see how it goes! thanks for the well wishes, it's nice to know you guys are here for support.
and my husband is taking good care of me! :P
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I thought the laparoscopy camera hole hurt worse than where the tube was. The flush is pretty easy. Hope the pain goes away soon!
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Glad to hear all went well. You'll be okay sweetheart. PD really is a doable thing.
good luck, and love Cas
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:clap; so happy to hear.. And so glad hubby is being good :2thumbsup; One thing down now, just keep it super clean and your on your way.. Hoping this all does beautifuly for you. Others sure LOVE it, so hope it's great. keep in touch :flower;
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For some reason I'm having intermittent R shoulder pain. The catheter was also placed on the R side. anyone have any thoughts on this?
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I get odd aches and pains all over my body. They come and go. Thank God they don't hang around too long or too often.
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Does anyone who hasn't been there have a clue? No they don't.
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Does anyone who hasn't been there have a clue? No they don't.
what do you mean?
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The right shoulder pain could be a gas bubble. The end up blowing you up with air when they do laparoscopy so they can see. Some of that air could have migrated to your shoulder. That can also happen when you do a fill on PD. it's not serious and should go away soon. If it lasts more than a day or so tell your nurse.
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thanks, that's exactly what I think it was. It has 90% gone away, thank God.. it sure was painful..geesh. it hurt more than my abdomen did!
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Does anyone who hasn't been there have a clue? No they don't.
what do you mean? you said you were nervous about starting dialysis,and your husband doesn't have a clue.
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-Chinksnicky: aww, thanks for defending my husband! :-) maybe it's just me, but if my loved one had a serious illness and impending surgery, I would be googling, researching, asking questions, etc., so that I 'would' have a clue! so that I could have some idea of what was about to happen.
however, he is going with the flow, and it is actually working just fine for us!
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I wasn't defending your husband ,merely stating that anyone who hasn't been on dialysis has no clue about what you will be going through! I too would try to get a clue if it was someone I loved,but without experiencing it like we have you really never do have any idea what it's like.I was really just being supportive.Sorry if you took it wrong, I meant no offense. Nick
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Nick is right JustMe! Me & your husband have no clue what Nick & You go through! Fortunately you have someone there for you and Nick does not. So he really has no clue what I & your husband are going through either! We are the spouses and caregivers of the one's we love and care for. We are not perfect for sure, but we are still here! Nick is not married and has no one but himself! Being alone is a sad thing!
Nick, Im sorry that you are alone at this. No body should have to go through things like this alone. If you ever come to Tennessee, stop in for a visit, and this caregiver will help you in anyway that I can.
God Bless,
lmunchkin :kickstart;
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Thanks Imunchkin,I'm glad you seem to understand what I meant.and yes I'm not used to having anyone care about me, even when I was married,It was always all about her,that's why I finally asked her to leave.I did not mean to start a controversy I only meant to be supportive.
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sigh... I'd like to know how this went from me venting about my impending surgery and husband, to me beating up on Nick because he has noone to care for him!!!??? geesh. I'm sorry, but I had no idea nick had no caregiver. However, this thread was not about that. I wrote it to get some encouragement about my surgery and how my life is now changed.
and.. just a few posts down, I acknowledge that my husband has done great! I couldn't ask for more.
geez.
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I know that! Believe me! I know how touch it is with care partners, it must be Hellish to go through this alone. You know, my John asks me to leave too, but I remain to offer more punishment to him! LoL!! I love my man and all who know me, knows that to be fact! Yes, I would trade places with him but things happen for a reason!
Seriously, though, no controversy here, and I do find you to be very supportive. And my invitation still stands!
God Bless,
lmunchkin :kickstart;
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Does anyone who hasn't been there have a clue? No they don't.
and no, I didn't find this supportive. sorry.
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My apologies Justme. I was responding to this by Nick!
Does anyone who hasn't been there have a clue? No they don't.
and I was responding to his comment by addressing it to you! My bad. And he does try to be supportive, but like me, he messes up sometimes. But Im not talking for him, so I messed up in addressing it to you! Sorry.
God Bless,
lmunchkin :kickstart;
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I have had one major operation and one minor, common procedure that both required pumping my abdomen full of gas, and the pain I felt from the gas FAR outweighed any other discomfort I experienced. Isn't that just stupid? I mean, really. So justme15, I am sympathetic! I hope you are feeling better.
As for "not having a clue", I have no clue at all about what it feels like to, say, go through chemotherapy, but if my husband were to be diagnosed with cancer and had to have chemo, I wouldn't NEED a clue in order to help in some way and to be supportive. No one really understands what it is like to be on dialysis unless you've BEEN on dialysis. My mother was on dialysis for 5 years, and on top of that, I think most people on IHD who have known me for some years KNOW how much time I have spent educating myself on all things dialysis since that's where I was headed. But the truth is that since I haven't yet BEEN on dialysis, there is a limit to my true understanding. Members like lmunchkin and boswife don't really KNOW what it is like to be on dialysis, but they don't NEED to KNOW. There is no limit to their support for their husbands.
Nick, there are numerous IHDers who are going through this stuff alone, and I know it is so very hard. But I suspect it is better than having a partner who works against you or who undermines you in some way, you know? I hope you have found support here.
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I really was only agreeing with you,justme,I'm glad your husband is starting to get it and is doing better,Best of luck,I really am sorry If you took my agreeing with you wrong,I didn't mean to be improper Nick
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MooseMom- each day is better and better. My job is relatively physical, so they don't want me to come back until I am 100%. They don't have any light duty for me. So, I guess I'll take this time off to get my house ready for PD and run some errands I never had time to do when I was working.
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I really was only agreeing with you,justme,I'm glad your husband is starting to get it and is doing better,Best of luck,I really am sorry If you took my agreeing with you wrong,I didn't mean to be improper Nick
No problem Nick! You and I are really in the same boat ( or at least similar boats). we are both trying to deal with this crappy disease. so no hard feelings.
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MooseMom- each day is better and better. My job is relatively physical, so they don't want me to come back until I am 100%. They don't have any light duty for me. So, I guess I'll take this time off to get my house ready for PD and run some errands I never had time to do when I was working.
I'm glad to hear that today was better than yesterday and that tomorrow will be better than today. I have no clue what it is like to transition from a transplant back to dialysis, but I can imagine without too much difficulty that it must not be an easy thing to do. I admire your tenacity. :cuddle;
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what a wonderful bunch we have here.. and MM :2thumbsup; , your right on......as always :cuddle;
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Yes we are, you solved a potential argument in less than 4 hours.
aw :flower;
love to all, Cas
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I am pretty excited right now!! my job called and said that they do have light duty work for me! So that means no sitting at home bored to death, and not having to go on short term disability! I start on Friday-woo hoo!!
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Congrats darling.
:flower;
love Cas
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:2thumbsup; :2thumbsup; :2thumbsup;
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I'm glad for you. Sitting at home can be so boring,
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I am pretty excited right now!! my job called and said that they do have light duty work for me! So that means no sitting at home bored to death, and not having to go on short term disability! I start on Friday-woo hoo!!
This is the best news I've heard all day! Terrific!
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:2thumbsup; See, it all works out :2thumbsup; soooooooooo happy for you :yahoo;
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so I'm geting the catheter flushed tomorrow. what does this mean? they're actually gonna put fluid in my abdomen and drain it back out? i'm a bit nervous about it
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That is exactly what they do JM15. They will take a 2L bag and run it in, dwell for maybe 20 minutes and then drain you out. It serves two purposes; first it keeps the cath open and running and second it starts your training on doing PD. Nothing to really be nervous about, it's all pretty benign. Good luck!
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well the flush was ok. the drain hurt, but wasn't unbearable. training starts next week!
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That's great news! :yahoo; the worst drain pain I've had was during my first couple of flushes. If that happens, just pinch off the line and shake your booty to move the Cath around. It will ease off. Good luck!
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Today was bittersweet. I saw my transplant doctor for the last time. She said she no longer needs to see me since I will be starting dialysis.:-( I guess my transplant is officially a thing of the past.
The good news is that i get to progressively come off of my cellcept, and decrease the dosage of my prograf and prednisone. She also says that I shouldn't have that much longer to wait on the list (1-2 years), my antibodies are low, and my hgb was 9.5!!!! My hgb hasn't been that high in over a year, and definitely not without the help of a blood transfusion. I attribute this boost to my nephrologist decreasing my cellcept back in Aug.
So, things aren't so bad. I can't wait to actually get started with PD so I can get my routine going.
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Like others have asked, are you going to get relisted? I am assuming you are already back on the list, judging by your post above.
I hope you quickly get into a good routine so that all of this becomes just, well, routine.
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You're going to be ok. The transplant center will keep in touch with you about getting relisted. You'll get to send them blood twice a month for PRA. When I was on dialysis between transplants, I only took prednisone for anti-rejection. I dropped the prograf and cellcept. Congrats on the low antibodies! Get back on the list and don't give up hope.
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thanks! I am back on the list. I have two years under my belt, and my transplant doc said that was a good thing!
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thanks! I am back on the list. I have two years under my belt, and my transplant doc said that was a good thing!
Oh, that's a VERY good thing! :yahoo;
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I don't understand. I have gained 5 lbs of fluid over the course of a week. However I still urinate. In fact I just did a 24 hr urine and it was about 2100mL (which is what it has been for a while now). My legs are swollen, lasix isn't helping. why? oh, and my bp was 162/112...how can I be urinating this much and still be retaining fluid? why did this happen all of a sudden?
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maybe you need stronger bags?
good luck, and love Cas
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How is it going just me, I start pd training on the 7th of Jan. are u still retaining fluid? Any other issues.
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I'm doing pretty well. emotionally a little depressed, but I really think the PD is doing what it's supposed to do. I had to have my catheter repositioned, but after that it has been doing fine. I no longer really have any pain during my drains. sometimes I have to wake up and sit up to have a complete drain, but that doesn't have too often. My weight has been stable, no fluid retention that I can tell. My main issues are
Baxter delivery-i hate them. period.
Blood pressure- it is just now (in the past few days) starting to come down after a month of PD.
constipation.- the pd nurses go on and on about bowel movements, and I understand why, but I'm having a hard time keeping things regular.
In spite of these issues I love PD because it gives me freedom and somewhat of a normal life.
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Hi Just Me, Just got my time on Dialysis shorten again. My numbers looks good, but will not be good enough for PD. Sope with PD nurse today and she told me I have to eat more meat, foods with pottassium and phosphorous. Those numbers are too low. I spent 2 years on a strict renal diet, now if I don't eat those foods to bring my numbers up, i may not last on PD long. I am going to start eating more so that I can do PD once I start. I have my first drain and bandage change at 1 pm today. So glad things are going well for you. Do you stomach really looks like you are 5 months pregnant. Wow. anyways, glad to know you are doing well, keep me posted please and I will do the same.
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well, I've always had a belly, but yes, I do feel my stomach protrudes even more now!!
I'm trying to eat more proteins/meats. Phosphorus is high, so I'm working on bringing that down.
The first drain and bandage change I was pretty nervous, but it really wasn't bad at all!
Please keep me posted on how things are going!!
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Its been since 2009 since John was on PD. Do they still preach Protein? I could never get him to eat enough Protein. PD was great as far as doing things he wanted to do during the day. He did cycler at night. He worked full time back then too. Honestly, I do not know how he did that. Im always amazed with his strength!! He is still a tough ole fart! :boxing;
God Bless,
lmunchkin :kickstart;
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Well Imunchkin that is one tough cookie. No way I could work fulltime while on PD. :clap;
And Justme, I used to eat every morning a big bole of muesli (no sugar ;D ) with fruit, and yogurt, it really worked.
good luck, love Cas