I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Deanne on February 09, 2014, 12:13:19 PM
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I got the call! :cheer:
Now I'm home sending out of office email messages, checking in my files, charging my electronic toys, arranging for cat/dog sitting, and pacing. I won't know anything else for a while. My coordinator is iced in at home, too. We're in the middle of an ice/snow storm and the hospital is about 1/2 hour away when the roads are good so it could take a couple hours to get there. I'm hoping it starts to thaw before they call me in. She said it could be later today, tonight, or tomorrow morning, but given the road conditions, she's trying very hard to not put me on the road after dark.
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EXCITING!!
:yahoo;
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Wow!!! Here's hoping!!!
:bow;
Good luck,and love, Cas
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Good luck!!!!xxx
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Oh that's great to hear!! I will keep fingers and toes crossed that you can get there safely and all moves forward.
:2thumbsup; Good luck to you Deanne.
Prayers for the family who is losing a loved one today. :pray;
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Oh, I can hardly breathe from the excitement, Deanne! I am hoping my hopiest for you and am eagerly awaiting more news from you.
Prayers to you and to the donor family. It's all bittersweet, isn't it. :cuddle;
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Fingers crossed for you!....
Thoughts and prayers for the donor family....
Hope everything goes well....
Darth....
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Whoop! Whoop!
Carl's kidney had to come from the northeast during a horrible snow storm three years ago. It made it to Knoxville and has had a new home since then.
I'm rooting for you!
Aleta
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Yay good luck and keep us posted!! :yahoo;
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Best of luck Deanne!
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How exciting! I can only imagine the waiting! Hang in there and hope the weather clears for you. Prayers for both you and the donor family! :beer1;
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Thanks ya'll! I don't think this one will be mine. My coordinator called back to tell me they're going to try to take the pancreas, too, and I was second in line for a kidney. The person first in line will get one kidney and the second kidney will go with the pancreas if the pancreas is usable. If the pancreas is not usable, then the kidney is mine. I'm surprised I'm not very disappointed or even surprised. I guess I've seen it happen so many times here, that I was emotionally prepared for a false alarm. I'll learn the final answer sometime tomorrow. In the meantime, it was a good reminder to make sure I have everything ready, and I'm glad I probably don't need to figure out how to get to the hospital on dicey roads. If I was second in line for a kidney this time, it means I'll probably be first in line the next time.
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Thanks for the update - will keep good thoughts. I like your attitude, when it's meant to be it will happen! :cheer:
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Thanks for the update....
I guess/hope it's a good outcome either way - even if you don't get this kidney, some person who needs that K/P tx with diabetes will hopefully benefit.. and that is a plus...
and you got called... that's got to boost your morale a little.... (specially in reference to that "top of the list"thread).
fingers crossed. I hate to say I hope the pancreas isn't useable and you get the kidney because that seems horrible and nasty for someone else, but still hoping for you!
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You've got a fab attitude, Deanne. It would seem that your new kidney will not be long in coming now. If this is just a dress rehearsal, you'll be all the calmer and more prepared when the real show begins. (And hopefully no ice on the roads.) Good luck!
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As Deanne's not been back to update us, is it too much to hope for that she's otherwise occupied being transplanted!.... :pray;
Thinking of you, Deanne....
Darth....
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As Deanne's not been back to update us, is it too much to hope for that she's otherwise occupied being transplanted!.... :pray;
Thinking of you, Deanne....
Darth....
My thoughts exactly! :2thumbsup;
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It's mine! I checked in at 8 this morning. Surgery will likely be tonight. The donor is CMV-. I thought CMV- was too much to hope for. BP is way too high. Hoping it drops soon.
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YIPPIE!!!!!!!!!......
:yahoo; :yahoo; :yahoo;
Great news, Deanne....
I'll be thinking of, and praying for you, and of course, the donor's family....
Best of luck, and may God bless and protect you!....
Love from us all....
Darth....
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I am so excited for you. You have been waiting a long time. Your new life begins soon. I'll be saying lots of prayers for you, for the donors family and for the doctors. It still amazes me every time someone gets a kidney. Isn't it truly a miracle? What an exciting day. Sending lots of love.
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Yyyyyyyyyyyyyyyyyyyyyyyyyyyyyaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaayyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyy!
OMG, I just can't believe it!!! Well, yes I can, but you know what I mean. ;D
I'm not sure I'll be able to concentrate on anything else for the rest of the day. I'll be thinking about you all evening long. I am just thrilled to pieces, and I'm hoping that by this time tomorrow, dialysis will just be a memory.
Deanne, I am very happy for you. Please keep us posted as best you can. God bless.
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Thinking of you Deanne and waiting for news. :flower;
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That's fantastic news! Wishing you a speedy recovery! :cheer:
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This is great! :bandance;
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best wishes!!!! WOOO!!!!
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Wonderful to hear!
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:cheer: :cheer: :cheer: :cheer: :cheer: :cheer:
So happy for you!!!
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Excellent! Welcome to the transplant side. :yahoo; :yahoo; :yahoo;
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What's meant for you is for you...congrats. May God bless you with this kidney that it will function for ever.
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So happy for you. Teary eyed over here!
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Fantastic news!!!!
:cheer: :cheer: :cheer:
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Tremendous news! :yahoo; :yahoo; :yahoo;
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Wonderful news!!! Thinking of u xxx
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Surgery was at 1:00 this morning. My parents and sister flew in yesterday and arrived a couple hours before surgery. I slept most of today, but was up for a short walk and some time sitting in a chair this afternoon. I think I'm done with pain meds already and I should be able to have clear fluids tomorrow.
My family is headed back to my house about 1/2 hour away for the night. As expected, I'm on insulin for now because of the steroids. My urine output is at 1900 already, creatinine is 1.75, bp and potassium are low. So far everything is looking great overall.
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:2thumbsup; :2thumbsup; :2thumbsup; :2thumbsup; :yahoo; :yahoo; :yahoo; :yahoo; :clap; :clap; :clap;
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Deanne, many congratulations to you, and here is hoping to a very speedy recovery. :yahoo; Can't wait to hear more from you.
I'm glad your family has arrived.
I'm so very pleased for you. Thanks so much for posting. Rest well.
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Yippie!....
Great news, Deanne... Congratulations to you and your new tenant!....
Darth...
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Fantastico!!!! Have an extra drink on me
:clap; :beer1; :beer1;
:flower;
Lots of love, Cas
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Awesome news! Have they started talking about when you will be going home yet?
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That is great news Deanne! Congratulations! :bandance;
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I'm so glad you are doing well and that bean has kicked in already. :2thumbsup;
Great news!
Aleta
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WOW!! !Those figures and labs are fantastic for so soon after the op.. and you walked and go tup.. That is brilliant!!
So very please for you!! May it continue to be smooth sailing.
always thought you had a good figure... er.. figures... er.. measurements.. er... oh heck.. I'm in trouble now! :rofl; :rofl;
:yahoo; :2thumbsup; :clap; :bow; :beer1;
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Such fantastic news. :)
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Hurrah! Please keep us up to date.
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Lol at Richard. My measurements, figure, and everything have pretty much been exposed to the world now. I flash people without a second thought. My creatinine came in at 0.5 this morning. Is there such a thing as too low? My doctors are talking about pulling the catheter out today and starting to remove the IV lines. If so, I might be able to go home tomorrow. Everyone here has been incredibly nice. They're going to send me home on insulin, as I expected. Steroids do that to me. My bp was a bit high yesterday, but I think it was because my mom had her relatives here, against my will. My nurse came to kick them out for me.
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Good for your nurse!! :2thumbsup;
Sounds like things are going really well for you. Hope you can get home soon. Again, congrats!
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Deanne, I always say that when I got my first transplant they surgically removed my modesty. I was in my 20s and never had kids. Now I just can't care.
Sounds like you're doing great!
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Why did I think this would be easier than it is? Everyone tells me I'm doing better than average. Able to get up and move around but very slowly,. I'm able to think clearly and am mentally "normal," but I hate that it hurts to move and I can't do little things like reach down to pull up my blanket or put my socks on without a struggle. Getting in and out of bed takes thought and planning. Put this leg here, this arm there, now slowly move your torso. Grrrrr. What was it like for others if they say I'm doing so well?
They're still talking about releasing me tonight. Maybe I'll improve faster at home. I'm glad I went through this. I just didn't think it would be so hard.
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Great news, Deanne....
You'll recover SO much better in your own environment....
There's an Irish saying 'níl aon tinteán mar do thinteán féin'... Translated, it means 'There's no fireside like your own fireside'.... Keep up the good recovery... And congrats, again....
Darth....
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The Foley catheter is gone and I'm getting my last IV infusion, then the neck line should be ready to come out. One of the doctors told me to put normal clothes on as soon as I can and they'll be more likely to release me today. I'm a bit nervous about going home because my mom might make me crazy.
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Why did I think this would be easier than it is? Everyone tells me I'm doing better than average. Able to get up and move around but very slowly,. I'm able to think clearly and am mentally "normal," but I hate that it hurts to move and I can't do little things like reach down to pull up my blanket or put my socks on without a struggle. Getting in and out of bed takes thought and planning. Put this leg here, this arm there, now slowly move your torso. Grrrrr.
Although I was the donor rather than the recipient, I can completely relate to this! I thought I'd never be able to move without planning everything down to the finest detail ever again! Then one day I was just able to do everything without thinking and the pain seemed such a decade ago ... ;D
SO SO SO pleased you have your new kidney and it's working so well!
*huggles*
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Deanne, what was the neck line for? I'm not sure I know what a neck line is, actually.
Recovery from any major surgery is hard, but if all went well, I can virtually guarantee that once you get home and into a regular routine, you will feel scads better (as long as your mom doesn't drive you mad!).
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MM, it's a line with 3 I tubes that is put down your carotid artery right down to your heart. Let's them do the things they have to do easier. Mine stayed in for a week. Only bothered me once when I started beading from one of the feeds. That was a bit scary. But overall, it was painless and benign
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MM, it's a line with 3 I tubes that is put down your carotid artery right down to your heart. Let's them do the things they have to do easier. Mine stayed in for a week. Only bothered me once when I started beading from one of the feeds. That was a bit scary. But overall, it was painless and benign
Thanks for that, Joe. I didn't have one of those when I had my tx. What things do they have to do that requires inserting a neck line? I guess what I'm really asking is why you and Deanne have one and I didn't.
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They call it a central line, and it just makes it easier to get 'stuff' into you while you are in the hospital. The team told me it was the first thing that went in when they took me into the OR.
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MooseMom, I had a PICC line in my arm at Wisconsin. Does the same thing but not in the neck.
MM, it's a line with 3 I tubes that is put down your carotid artery right down to your heart. Let's them do the things they have to do easier. Mine stayed in for a week. Only bothered me once when I started beading from one of the feeds. That was a bit scary. But overall, it was painless and benign
Thanks for that, Joe. I didn't have one of those when I had my tx. What things do they have to do that requires inserting a neck line? I guess what I'm really asking is why you and Deanne have one and I didn't.
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OK, cattlekid, that makes sense. Thanks for that. Why would a hospital use a neck/central line (that goes into the heart) instead of a PICC line in the arm? A neck line sounds so much more dangerous. Maybe it isn't, though. ???
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Deanne, congrats on your transplant. Sounds like you're doing very well.. Imagine a delayed graft function (three weeks), having the catheter in for two weeks and doing dialysis for three weeks AFTER the transplant. Yes, there is pain and it takes time to get back to a more normal place, but it will happen.
If your mom drives you crazy, send her out on lots of errands for you. HA.
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MM, it's a line with 3 I tubes that is put down your carotid artery right down to your heart. Let's them do the things they have to do easier. Mine stayed in for a week. Only bothered me once when I started beading from one of the feeds. That was a bit scary. But overall, it was painless and benign
Thanks for that, Joe. I didn't have one of those when I had my tx. What things do they have to do that requires inserting a neck line? I guess what I'm really asking is why you and Deanne have one and I didn't.
It may depend on the center MM. And I can't answer what is special that they have to use the central line. I just know they had all kinds of meds going into mine, including my pain pump.
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I'm home now and hoping to adjust quickly. They told me they use the neck for the central line because the veins in arms aren't large enough. I had 8 bags of stuff dripping into me at once for the first two days. The used an ultrasound to insert the line after they put me under.
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:bandance;
Great you are home,,,
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I have a much better understanding about the compliance concerns to qualify for transplant now. I've always been very compliant, but I can see how much more difficult it is already. I thought centers made a bigger fuss over it than is necessary, but I see now that some of the restrictions and requirements, especially in the beginning when it's probably the most critical, are very challenging. I had to set up about a dozen reminders every day for different meds and tasks, reminders to drink water, reminders to check my blood sugar level, and the list goes on, all at a time when I just want to sit here and do nothing. I have to remind myself not to bend over, twist at my waist, lift anything up, wash my hands constantly. If even fully compliant people find it hard, I can't imagine the struggle for people who struggle to be compliant without all this extra stuff.
I'm pretty sore today. Taking a shower wiped me out. I need to get off the couch soon to take more meds.
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The problems you're having are normal. They cut those abdominal muscles and then you realize what they control. Things will get better with time. Try to walk every day even if it's just between rooms in your house. The meds seem like a lot now but in a month will be easy. Showers are very tiring at first as are a lot of things. But if they took out the Foley and are ready to take out the central line and send you home you're doing great.
They may have given you a pillow. If not have your mom bring one for the drive. Hold it against your incision for bumps and turns. At home hold it when you cough or sneeze. You'll need it for a few weeks. I also used an extra pillow while I slept along the side that had my incision so I didn't roll over on it.
Your mom very well might drive you crazy esp if you're on prednisone. Go easy on yourself if you feel a little nutso on the new meds.
You're gonna be great! Ask us any questions you have.
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Glad you are home. We had to live near the transplant hospital, 2 1/2 hours from home, for 5 weeks. It was such a relief when we were finally able to come home.
I hope each day is better and better. Jenna had prednisone for only 3 days so it wasn't too bad. Take care!
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Deanne, you're doing awesome!! (and I'm NOT just talkin about your measurements hehehe)..
seriously you seem surprised (maybe?) or maybe a little disappointed but you ARE doing much better than average!!! A creat of 0.5 and you're up and out of there in what 3-4 days? I mean holy crap that is amazing!!! Seriously!!!
:bow; :bow; :bow; :bow;
So glad :yahoo; :2thumbsup; :clap; :2thumbsup; :yahoo; you're home!! It is much different to adjust to of course, but you'll be fine. Long live your wonderful bean!!!
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Hello prednisone. I remember you. I hate you. My blood sugar is staying reasonable enough that I don't need insulin yet, but I clearly remember the muscle wasting and I think it's hitting. Instead of getting easier to move around, it's getting harder. My legs are constantly tired. When I get up in the morning, I have to go sit down, take my meds and give them time to kick in before I can walk around much at all. I'm hoping that since I'm on a lower dose than I was in the past, this is as bad as it'll get. When I was on it before, I couldn't lift my legs up onto a curb and I had to use my hands to lift my legs into the car. I was on the edge of asking for a wheelchair.
Which med causes peripheral neuropathy again? That's sneaking in there already, too. Warm showers burn.
I'm one week out now though. :cheer:
One more week and I'll be done with the anti-viral med and hopefully I'll be backing off on the phosphorus, potassium, and magnesium supplements. If I can get rid of all of these, it'll be 10 fewer tablets a day.
I'm not disappointed in my GFR progress. That part is awesome! I'm disappointed that I don't feel better overall. I think I'm down to tylenol for pain anyway. That's progress. I think some of the pain is from the drain and that'll be gone Thursday.
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Deanne, why were you on prednisone before? Sorry if you've told us and I just can't remember.
Are you taking the supplements because your labs show that you need them? Is your new kidney working "too well"? LOL! I know that one of the immunosuppressants can leach magnesium from the body, so when my tx neph suggested supplements, I asked if I could just amend my diet. I drink an extra glass of milk and have a small serving of nuts each day, and that seems to do the trick. I do take an OTC multivitamin, though, as suggested by the neph.
OK, another stupid question...What's the drain for? I never had that. Is there something wrong with your incision? Is it not healing well or something?
Recovering from major abdominal surgery is rough. I am sure that your body is healthier because you now have a normally functioning kidney, but that doesn't mean you FEEL better yet because your body is still recovering from the physical trauma of surgery. I know you will be fine. "One day at a time" is a really useful mantra. I know that there will come a day, quite soon, where you will wake up and will feel sensational, and you will spend the day completely overdoing it, and the next day you will hardly be able to move due to the exhaustion! LOL!
Thanks for posting about your progress. I'm eager to read more. I am so glad things are working out well for you, even though I'm sure it doesn't always feel that way.
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I was on prednisone to treat my kidney disease about 17 years ago. It was rather traumatic. I ended up in the hospital with a blood sugar level of 1500. They said they were surprised I wasn't in a coma, if not dead. Within two weeks of starting it, I could barely walk because of the muscle wasting. Stepping up onto a curb was out of the question. I had to carry groceries in from the car one item at a time. My knees and ankles were incredibly painful for close to a year after discontinuing it. I had to hobble downstairs and sit in the couch for an hour after taking my dose in the morning to alleviate the pain in my ankles/feet. I lived in a house of stairs and had to pull myself up using the railing. When I got in bed at night or into the car, I had to sit sideways and then use my hands to pick up my legs into the bed/car. It was really bad. That was at 60 mg/day. I'm only on 20 mg/day and will taper down from there, so I'm hoping it'll never get so bad again. I have some muscle wasting already, but I'm still able to walk a bit better than I could then. My blood sugar level is high, but not high enough to warrant insulin, and they're watching it.
I'm trying to bring up my potassium, phosphorus, and magnesium through diet and they're slowly starting to improve. Yes, my labs show they're low. I'm eating a lot of nuts and dairy. I need to work more on the potassium yet. I bought some oranges and bananas yesterday.
You didn't have a drain in the hospital at all? It's to drain "stuff" from around the incision site. I don't think it's unusual. Since I came home from the hospital so early, I had to come home with it.
I've been trying to go for a walk every day now. I have a Fitbit to track my progress. Yesterday I managed 2600 steps (1 mile). Today I'm at 1800 steps (.8 miles). I don't think I'll get as much in as I did yesterday. It wore me out yesterday. We might go shopping tomorrow. If so, I hope to get to 1600 or better.
I'm getting the silent treatment from Mom today. She had me book tickets for my parents and my older sister and she insisted they be on the same plane back. My sister needs a round-trip ticket. My parents need one-way tickets and I couldn't get a good price. I told her she was crazy for paying 7x the price I could get by putting them on separate flights. My mistake. I booked them, but ended up canceling them later because my brother-in-law was able to do much better than me. I'll still get the silent treatment for a day or two. I'm used to it, but I'm annoyed at myself for saying that. I know better.
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Say what? You're a week post a major op, in recovery, and you're now a travel agent? Sorry but WTF?
And you're getting silent treatment because they all want to sit on a plane together?
is it just me that thinks this perspective is all wrong?? Seriously?
btw you mentioned antiviral - which one is that? I was on the one starting with B (can't think of it right now) for like 6 months post-tx (to be sure).. you're being moved off stuff very quickly, but you're doing very well it seems!
and yes, pred bits the big one I agree! Hopefully better for you as dose is dropped down to like 5mg or something.
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Deanna, I had a draining problem after this transplant. I think it's because we were both on PD. My doc didn't close the top layer so I could drain all the extra fluid. They would put large bandages on but eventually I'd be a mess. The nurse would come in and clean me up. Then when I went home my mom had to change my bandages but by then it was a little slower leak. It took about 3 weeks to close on it's own. They didn't put a drain in but I think it's the doctor's choice.
Prednisone sucks. For everyone. I wish there was a better option.
Your mother is being a pain. Practice saying no. You'll need it for when she wants you to do stuff.
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Deanne, no, I didn't have a drain, and maybe jeannea is correct about needing a drain because of PD? I have no idea. I was just stapled up completely.
Were you on prednisone pre-D as a treatment for your fsgs? It sounds like you had a truly awful experience with it, so I hope that this time it will be better. I believe that 5mg is the usual long term maintenance dosage, so maybe that won't be so bad for you.
I hope you are feeling better today! :2thumbsup;
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Anyone heard anything more???
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When I was doing my pre-op teaching they told me that usually everyone gets a JP drain. They insert it near where your new kidney is to drain off fluid that can build around it. I was never on dialysis, and when I awoke from surgery I actually had two drains. It's just a tube that ends in a ball that collects the drainage. When the drainage hits the lower threshold they take them out. I had mine for a week maybe. They basically just snip how it's secured and then pull the tube out. Then you have a "hole" that heals from the inside out. I keep mine covered with gauze unless I'm in the shower. Mine have dried up, but because of all the meds I'm on they said it might take a while to close completely.
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Well, I'm just baffled, I must admit. Neck lines and drains just seem to be rather dangerous, and I don't understand why they are used if they don't have to be. I've had neither, and I don't understand why. Not that I'm complaining!
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For my first transplant, I had no drain. The doc used the dissolvable sutures underneath and those weird pieces of tape on the outside. When the tape curls up and falls off you're done. I had a large abdomen after surgery because they had put fluid in during surgery. But every few days I would wake up smaller and weighing 4 pounds less until it was gone. Second time like I said the doc left the top layer open. He said it would work better.
I still think it's the surgeon's preference. However he learned or however he likes things better.
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I had a drain for my tx surgery, and a larger drain for my post-biopsy injury emergency surgery. I personally am all for the drain. One of our own on this website had a tx back in May, and she ended up having to go in for surgery after being discharged due to fluid buildup around her kidney. She did PD for many years. Her IHD name escapes me, but those of us on Facebook know her as Lisa.
For my biopsy-induced hematoma catastrophe, I drained 660 ml overnight after the surgery, which happened at night. I wouldn't want to know what would have happened without that drain...
I also had the neck line both times, too. They put it in when you're under, and take it out before you go home. I think it's a way to save your veins in your arm, as well as a way to do multiple things in a fairly easy way. Yes, it's annoying to have on you, but it's only when you're in the hospital, thankfully.
Has anyone here ever heard of tx hospitals having shared rooms for tx patients? Mine does not do that, but I learned recently on Facebook that apparently the Cleveland Clinic does. I can't even imagine that!
KarenInWA
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I can't imagine a shared room, either. The drain is a pain, but I see the necessity for it. I was good with the neck line, too. Daily blood draws were a breeze with it.
The antibiotic is bactrim. The anti-viral is acyclovir. I don't remember how long I'll be on bactrim. Acyclovir is just for 2 weeks.
Prednisone in the past was to try to put FSGS into remission. I was spilling 10 grams of protein. It brought this down to 3 grams and bought me several years.
Mom chilled out overnight. I don't think she realizes she has mental health issues. We went shopping today and my legs are done now. I was trying to hold off on the Tylenol until bedtime, but I had to cave in. They told me more than 3 doses a day, so I'll need to go back to an oxycodone before bed. Tomorrow is my first clinic appointment.
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Wow, shared rooms? That seems counterintuitive.
I had daily blood draws from my IV line sited in the vein on the back of my hand. Still don't understand the need for something as invasive as a neck line, but there you go.
I'm allergic to Bactrim (hives from Hell), so I had to have that pentamidine inhalation therapy for 6 months. It was a pain, but at least it meant fewer pills for the first months post tx.
Deanne, I took cyclosporine to put my fsgs into remission, and it bought me time, too, but once my gfr fell below 18, my neph decided that the cyclosporine was now becoming toxic. It's a fine line. It seems that people with fsgs are treated with either cyclosporine or with prednisone. I guess it depends upon the neph. Mine told me he didn't like the side effects caused by pred, so post tx is the first time I'm encountering this drug.
I hope your pain is better tomorrow, and I'm hoping that you have good news to share with us after your clinic appointment. And I hope things get better with your mom! Don't want to have to deal with these kinds of issues after a kidney transplant!!
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Hope clinic goes well Deanne, and glad u are out of hospital!
I had a drain and neckline, i asked about them before hand as they were in the literature with what to expect to be hooked up with when u come round. The neckline was great as they didnt needle me for blood for a few days (i begged to keep it longer lol) , they said they couldnt take the blood from the iv in my arm as that was used for fluid and pain relief etc it wouldnt give accurate results. Think the neckline was also in case of emergency dialysis if kidney didnt kick in (i think, not sure on that point, and obviously i was a pre-emptive tx patient with no cath or fistula so made sense to me, but everyone else on the ard had them and they werent pre-emptive.)
The drain was a pain, literally! It limited my movement but it let a lot of fluid or whatever off, i had a pool of it i think cant remember, i remember being in agony one night as someone had turned off the suction and i could barely breath til nurse put it back on what a release!, i had it in a few days longer as my abdominal surgery was more complex with the unusual bladder position etc. And oh my goodness did it hurt coming out, ouchy ouchy ouch!!! (helped tho that the rather young, hot, doctor who took my blood every morning removed it, ll the others just had the nurses do that and their blood ;) ) I'd heard about the drain before, from when i realised i might have a c section with my daughter, apparently u sometimes have them during this and the women were describing the pain of that worse that the section or birth, thankfully i escaped it for that ;) Dont know why some have it and some not tho?
Well being in the UK, i didnt just share a room, we are on wards!! I had 3 others on my ward and that included a bathroom to share. Way better than maternity wards tho where i was with 5 other mums and babies all cramped in like sardines and 2 bathrooms between the whole floor! I did manage first time round, and for a few days 2nd time to have a room to myself because i am high risk cos of kidney (one perk of being me :) )
Oh my goodness the tx ward was awful could get no rest at all (the maternity u kind of dont expect it so much, what with babies crying including yours), my tx ward was full, after me, which was pre-emptive my surgeon performed 3 more txs where people were called in so they were all surprised and happy, but the woman opposite me bless her was 72 and im not joking snored like a foghorn all night and day!! Then u have the other people not understanding how to use headphones and watching their tv for the ward to all hear, not to mention machines beeping all day and night lol. Only plus was always someone to chat to :) And tbh cant really complain as we don't pay for it and i get all my prescriptions free too, so u take the good with the bad :) Oops gone on a bit hope u enjoyed the insight into uk hospitals lol.
Anyway take care and update us soon Deanne xxx
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lainiepop, I was living in the UK when I was pregnant. I was diagnosed with pre-eclampsia (didn't know about my kidney disease at the time) and was in hospital for ages. I was in a room at the end of the corridor in the maternity ward; my bed was one of three. We were all antenatal, hence being separated from the other mums. It was at the end of June, and omg was it hot! No air conditioning, sharing one bathroom, no tv or any amenities at all, a shared kitchen space where we'd go and make our breakfasts ourselves. But I think all of that saved me from going insane. My roommates and I would stay up through all hours of the night just talking and having fun. I got to meet expectant mums with all kinds of experiences and reasons for being in hospital. One West Indian lady was carrying twins and was in hospital because of some complication that resulted in her having so much swelling that her ankles had disappeared.
She was really upset that she was unable to get to her hairdressing appointment. I mean REALLY upset. She explained to me that the texture of West Indian hair was such that you couldn't shampoo it because the water wouldn't get to the scalp. Instead, to get her type of hair and scalp really clean, it had to be steamed. I thought that was fascinating. She begged and begged for her doctor to let her out for just a couple of hours. He finally relented, she went to the hairdresser, and you guessed it, she went into labour while there.
Once I had my baby, I went to the maternity ward, and it was hell. I had a bad reaction to some med and could not sit up because doing so made my head feel like it would explode. It was terrifying. The consultant anesthetist was unavailable as it was the weekend, so I had to lie flat on my back for the entire weekend. When she finally returned, she took me off all meds, and I was OK. In all, I spent 6 weeks in an NHS hospital, and it was quite the experience. On the plus side, I got good care, and I didn't have to pay a single pence. I can't imagine what my bills would have been had I been in the US.
But back to you, Deanne, I'm thinking about you and am hoping that all is going well at your first clinic appointment. I can't wait to hear about it!!
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Deanne !!!
I haven't been on IHD in such a long time...........So excited to read about your transplant. Seems like a lifetime ago we met at Powells. Did you have your surgery at OHSU or Legacy?
I hope you are healling well. What a wonderful gift...
Love, Kelli
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It's been ages Kelli, do you ever come up here anymore?
My first clinic appointment went well. They said I'll likely need to settle with "excellent" function with a baseline creatinine of 0.75 instead of "outstanding" with the 0.5 I had while connected to IV fluids. The JP drain is gone. It hurt but it's a release to be rid of it. The neph reassured me about removing the PD catheter. He said the'll put me under for it. I was pretty scared about it. They won't allow me to drive for six weeks. They finished my MLOA paperwork for me and put down May 1 for my return to work date. I thought they'd say March 31. It's worst case, so I think I'll still go back in March - working from home since I'm not allowed to drive.
I'm still on pain killers and a bit concerned about it. I've always had a pretty high tolerance level, so I don't know what to make of this. I didn't need pain killers for my PD catheter placement, gallbladder surgery, or anything else. Am I overdoing it and that's why it still hurts? Today was day 9. They said it's good to walk and I've managed to walk about a mile in a day for three days. It's difficult, but I made it. Is that too much? Tonight was very painful again and I didn't even walk that far today. I try not to bend, but I admit I have picked thins up off the floor. Is that causing the pain?
I had my first pizza in a year for dinner. Bliss!
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Glad it went well Deanne, your creatinine is awesome xxxx
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I didn't have a drain or central line after transplant. I went into the operation with a chest cath but came out of it without one. The only argument Gwyn and I have ever had with my surgeon (it was quite the altercation, too) was over whether I could get a PICC or port put in. My veins were so bad and I was exhausted from the worry over whether or not they were going to be able to find a vein. About a week after the operation I was in desperate need of a blood transfusion. I had already been discharged so was to get this at their on-site clinic. The tech tried a few times to get a vein but kept failing. Gwyn rang the doctor and asked for a port or PICC line but the doctor said no emphatically, stating the infection risk was too great. My immune system had been wiped out from chemo and radiation, and I defer to his infinitely greater knowledge of these things, but I was just about to give in to the fear and stress and pain and become completely unhinged. Finally the surgeon said there was no way he would authorize a port, but he was going to ring the department that put in all of these various accesses and use his influence to have me scheduled for a PICC placement against his better judgement. If I hadn't been unable to speak from pain and frustration, I would have told him to wait. Instead, I asked the tech if there was anywhere else to try, and she said there was one more vein. Gwyn held my hand, I held my breath and she hit that last vein. Then, of course there was the tension from needing that vein to hold out for about an hour as the transfusion took place. Gwyn phoned the doctor back and he was none too pleased that he had gone to the trouble of getting me scheduled for an emergent PICC placement and now we were saying 'never mind!'.
Some days I still wish I had a line from which to draw blood. If they didn't require maintenance and pose an infection risk, I would have jumped to get one for my last hospital stay. I still feel that stress with blood draws.
Speaking of UK hospitals, once I was no longer contagious I went to a ward with 5 other women, 2 shower rooms to share. I thought I would hate it as I was in no mood to socialise, but actually I was quite grateful for the situation in the end. Yes, it was difficult falling asleep some nights when people would be talking, crying, whatever, but if I had needed help of any sort I have no doubt that they would have come to my aid. The woman next to me had Down's Syndrome and her mother (and often her father) would spend all of the visiting hours at her bedside. She was obviously from a posh family and when her parents were there she was quite sophisticated, I would say she could behave like a confident teenager for that time (she was probably in her 30s). When her parents would leave, oh, poor thing. She would sob but I could hardly blame her, I felt the same just didn't express it. Like her, I was in pain, I missed my family and I wanted to go home. She would wake up in the night in pain (gout) and one woman in particular would always tell her to not try to get out of bed, she would get a nurse for her. The staff were almost all brilliant with her, she clearly had many medical problems as they all knew her quite well. This woman could be adorable. She had food allergies so she had to keep her menus to show her mother. She would talk to herself, repeating phrases over and over like 'Keep it for mum'. She would also talk to her IV line 'No, you can't come out. Stay.' I found it really charming. When I was in hospital in LA with viral meningitis, I had a private room but since I could barely move it was terrifying when I dropped the call button. My only option was to scream bloody murder until a sulky little intern walked in, said nothing, handed me the call button and walked out.
Having read the descriptions of a drain, I still am not entirely sure how they decide who does and does not get one.
Deanne, it sounds like you are doing fab! I know all too well how it doesn't necessarily feel that way in the early days. My creatinine dropped to .5 while I was in hospital, too, and then rose slightly. It's the perfect hydration and lack of exercise that does it - my creat fell back to .5 when I was immobile in hospital for over two weeks. It quickly returned to about .8. I think we can both find a way to cope with just being excellent! :)