Called! Waiting, waiting....

[Poppylicious]

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 ... 

SO SO SO pleased you have your new kidney and it's working so well! 

*huggles*

[MooseMom]

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!).

[Joe]

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

[MooseMom]

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.

[Joe]

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.

[cattlekid]

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.

[MooseMom]

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.

[ToddB0130]

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.

[Joe]

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.

[Deanne]

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.

[cassandra]

   


Great you are home,,,

[Deanne]

 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.

[jeannea]

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.

[okarol]

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!

[RichardMEL]

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!!!

 

So glad you're home!! It is much different to adjust to of course, but you'll be fine. Long live your wonderful bean!!!

[Deanne]

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. 

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.

[MooseMom]

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.

[Deanne]

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.

[RichardMEL]

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.

[jeannea]

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.

[MooseMom]

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! 

[thegrammalady]

Anyone heard anything more???

[Ninanna]

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.

[MooseMom]

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! 

[jeannea]

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.