I don't feel well

[SweetyPie]

This is 2 weeks after transplant. Today I had dialysis. For those who are confused go to the transplant forum and read my post about my transplant.

Okay, so the nausea never stopped after the surgery. I have no appetite and it hard because I have all these meds to eat. Today I threw up. I also peed today. I am not myself I hate this. Its way to hard. I have to go to the weekly appointments and dialysis. Too much to handle

[MooseMom]

You are only two weeks out of major abdominal surgery in which surgeons stuck a foreign solid organ into your belly.

You are being "assaulted" with a cocktail of some very hard-hitting drugs.

You are still having to go to dialysis.

You are not eating well, so your body is not being properly fueled.

So, of course you are "not yourself".  I'm not surprised.

In my extraordinarily humble opinion, the first thing you should tackle is the nausea.  What do your doctors have to say about this, and what are they going to do about it?  If you are constantly nauseous, your life will be hell.  If you cannot eat properly, your recovery will be delayed.

It will not always be like this.  If you are peeing, that tells me that things are improving incrementally.  I hope that things will get better for you, and I urge you to be patient and as optimistic as possible.  I know it can feel overwhelming.  Sometimes, it just is.

[SweetyPie]

Thank you for your kind words I really needed this. I dont know what I expected after surgery. I thought I was gonna feel great afterwards and i never thought I wpuld have to think about dialysis. At night my stomach cramps are horrible. Im not sure why I get them but they are painful and I feel awful. I hate to admit it but I know Im dehydrated I dont know how this happened. It scares me because I dont want to jeopardize this kidney. What are some easy things for my stomach? Also doctors have me on phenergan tablets for nausea. I see the doctor Friday will bring this up.

[MooseMom]

I'm glad to hear that your doctors are treating the nausea!  At least that's something.

I'm really sorry to hear that you are one of the many who have to use dialysis as a "bridge" to more efficient renal function by your new kidney.  It must be tough and dispiriting right now; you have every reason to feel frightened and unsure.  I am hoping that in the not too distant future, you WILL feel great!

When you say that you have stomach cramps, are these accompanied by diarrhea?  You mentioned knowing that you are dehydrated, so I am adding one plus one and getting diarrhea.  If that's the case, then maybe try to eat bland foods (the type of food they probably gave you while you were still in the hospital), some toast, an egg, and maybe some broth.  Weak tea, perhaps.  I'm hoping that on Friday, you doctor can make some better suggestions.

Do you have a transplant coordinator you can speak with right now?  My tx coordinators were terrific during the first crucial year; they always made themselves available (even on a Friday night when it seems I needed one the most!).  They know that new tx patients have a lot to cope with, and one SHOULD have made sure that you know how to contact him/her at any time.  Is there anyone at your tx center that you can contact today to explain how you are feeling, that you are worried and that you don't know what to do TODAY?  Can they make any recommendations on what you should be eating or drinking TODAY?  I had to see you worry yourself mad waiting for Friday to come around.

[iolaire]

Stomach cramps (and diarrhea) can be withdrawal symptoms from opiates after a period of intense use.  That could be coming from whatever huge amount of pain meds prescribed after the surgery.

I second the recommendation to contact the tx coordinators.  Post transplant is one of the few times where patients actually have access to an extreme level of personal medical resources with a phone call so don't feel bad utilizing it.

[SweetyPie]

At the moment I am constipated. I had a bowel movement today. My stomach cramps feel like I might have diarrhea but its the other way around. Do you think it might be bad gas? I don't know. Also I sit a while on the toilet and do pee but then 2 min later pee a tiny bit more?? Very confusing why it doesnt just come out all at once.

Also yes I was thinking about calling someone today they gave me a number to call.
I am still on pain medication my body for some reason takes a while to heal and the doctor said theres still a lot of inflammation at the kidney site.
All of this is very tough. Im taking it one step at a time.

[LorinnPKD]

Please do call ASAP.  Someone needs to step in to manage this more actively, address your concerns, and make sure you're getting enough nutrition to support your recovery.  I personally love phenergan for nausea but it doesn't work on everyone, so please ask about options. 

You sound miserable right now and I bet things can get better.

[SweetyPie]

I called the on call doctor yesterday and he explained that my bladder isnt used to everything thats happening so it cant hold much volume which is why I have the urgency to go.
I also told about the nausea he said just take it easy and eat what you can But mention this to the doctor on Friday. I am also scared I am not getting any nutrition as well. Im stressing also because I want this kidney to work. This is all very difficult.

[MooseMom]

Of course you're scared, and it IS very difficult!  But you have a whole team of experts doing what they can to make your transplant a success.

I'm glad you spoke to the doc on call and that he gave you an answer or two.  His explanation makes sense.  I guess this is where patience is needed.  Your body is in a whole new universe.

Fortunately you have only one more day to wait until you get to see your doctor tomorrow.  In case you haven't already, maybe you can make a list of the things that are worrying you. 

Whenever I was really anxious, I would ask my doctor to give me reassurance.  I would outright ask him/her to tell me something I DON'T need to be worried about.  I'd ask to be told at least ONE thing that was WORKING.  It's so easy to get bogged down in all of the worries and to lose sight of the positive things that are happening.  I am by no means Little Miss Positive, but if you want to get a complete picture of your current condition, it is necessary to know what is going right as well as what might not be.

If you feel like it, maybe you can give us an update after your appointment tomorrow.  Good luck!  I am very eager to hear what your doc has to say!

[SweetyPie]

I went to the doctors today and I also threw up early this morning despite having much in my stomach.

Doctor prescribed a new nausea medication Reglan (i think thats how you spell it) and we will see how it goes. He said if it doesnt get better Ill have to be readmitted because I have to get nutrition in. I dont know. Its a mix of emotions. I dont know what to think. Its really hard. I pray this all passes soon.

[SweetyPie]

Update
I started the new medication and it has done some good for me. Before this I was eating nothing and not drinking for 3 days straight. This allows me to eat. Im less stressed in this part of the recovery. I see relief on my mom as well.  As for my kidney, no news yet. Doctor says its a waiting game. So please pray for me.
I am still making urine. I drink a little and feel I have to use the restroom. I dont like it as it hurts to go to the bathroom its very uncomfortable. I know its because I did not pee for 8 or so years. Akso it could be the meds I dont know but im shaking like crazy. I hate it. So yeah thats my update. Still hanging in there

[iolaire]

I had the shakes bad from the medication as well. They wanted me to drink a ton after the transplant to wake up the kidney so try to get the amount you drink up.

[SweetyPie]

Did you have a sleepy kidney as well? How can I step up my drinkinh? Does it matter if I drink juice or does strictly have to be water?

[iolaire]

They were telling me to drink 3 liters a day or something and making me track my urine output with a pee bottle. I think I was doing something like 2500 milliliters not quite the 3000 they wanted but they were happy with that. 

I think any liquid is ok as long as it’s not going to throw off your lab work.  The transplant dietician could confirm.   I think kiwi and pomegranate juice are off limits forever but basics like tea, coffee, water and soda should be fine.

For a while my blood sugar was up because of high prednisone so you might be a tad careful with high sugar drinks. But they were telling me to drink Diet Coke soda to get the phosphate up - I don’t do diet so I was drinking normal coke.

It took me three or four weeks to get my creatine below 2.  Which meant my new kidney was functioning good. It’s settled at 1.4-1.5 which is at higher end of normal.

[iolaire]

The shakes are from the tacrolimus. In my case that’s envarsus. At some point once they think the kidney has settled then they will decrease it and the shakes will go away. I think that also keeps the creatine up.

[SweetyPie]

They were telling me to drink 3 liters a day or something and making me track my urine output with a pee bottle. I think I was doing something like 2500 milliliters not quite the 3000 they wanted but they were happy with that. 

I think any liquid is ok as long as it’s not going to throw off your lab work.  The transplant dietician could confirm.   I think kiwi and pomegranate juice are off limits forever but basics like tea, coffee, water and soda should be fine.

For a while my blood sugar was up because of high prednisone so you might be a tad careful with high sugar drinks. But they were telling me to drink Diet Coke soda to get the phosphate up - I don’t do diet so I was drinking normal coke.

It took me three or four weeks to get my creatine below 2.  Which meant my new kidney was functioning good. It’s settled at 1.4-1.5 which is at higher end of normal.

I was told to drink 2 liters a day. I am drinking nowhere near that. I have to use the bathroom when I drink even a little and it hurts to use the bathroom so I guess in a way I am trying not to use the bathroom... i know it sounds bad. Im working on this and still forcinf myself to drink more and more. Its sad I used to die to drink however much I wanted and now I dont like looking at food or drinks much.
I am not on prednisone so my sugar is at a normal range. More on the lower side though.
As for my creatnine, it seems to be hanging around in the 5.5 range. I dont know if thats good or bad. Tomorrow will be the 3rd week since my surgery. Im gettinf stressful. But in a way you sharing what you went through is reassuring. I think if I pick up drinking I will be in a better postion. Tips on how to get thirsty will help.
I used to be on 2 prografs per day. Now im on 3 think my shaking is coming from that.

[iolaire]

That creatinine sounds like a good intermediate level.  I don’t have many suggestions on how to drink more other than to pick liquids including food like watermelon or soups that you will enjoy drinking or eating.  Salty foods might make you drink more but be careful as you don’t want to be dehydrated and still not drink.

Regarding the pain I hope they have checked obvious things like a UTI?  I think one of our recent transplant recipients was in the hospital extra post transplant for an infection like a UTI. 

Otherwise try to visualize/compare the pain of peeing versus dialysis. If the kidney kicks into life strongly then future years of dialysis related pain and stress go away. 

[SweetyPie]

That creatinine sounds like a good intermediate level.  I don’t have many suggestions on how to drink more other than to pick liquids including food like watermelon or soups that you will enjoy drinking or eating.  Salty foods might make you drink more but be careful as you don’t want to be dehydrated and still not drink.

Regarding the pain I hope they have checked obvious things like a UTI?  I think one of our recent transplant recipients was in the hospital extra post transplant for an infection like a UTI. 

Otherwise try to visualize/compare the pain of peeing versus dialysis. If the kidney kicks into life strongly then future years of dialysis related pain and stress go away.

It does seem like an okay level to be at. I will try to drink more soups. I talked to the doctor he said its not a uti. Its just that I havent peed in so long thats why.
Im.gonna try my best to drink but the stomach pain I get with the meds make me not want to do anything. I do have diarrhea whenever I use the bathroom. I guess I wouldnt call it diarrhea as im not going 4 times a day but I have a sudden urgency to go and its very loose.