different feeling on transplant...

[tyefly]

Ok   I can not paint a story that is peach cream....   I felt pretty good right after transplant.....  and they have been increasing my drugs.... since then.... I feel drug all day long....  tired..... and zombie like....  I felt better while on dialysis....  really   I did...  I had way more energy , clear brain, not tired, not zombie like....  the only time I felt bad on Dialysis is if I skipped two days.... then it was just a hangover feeling..... do dialysis and I am back to normal....  I sure hope this is not how I am going to feel from now on.....  I am thinking they way I feel I would rather of just stayed on dialysis...... Is that crazy or what....yea I have more freedom.... but dont have the energy to run around....  I am not likeing this at all.... I like to be busy... feel good  and motivated....  I hate feeling like a zombie...I guess there is not going back now.....  these drugs are driving me crazy.....

[MooseMom]

I am really glad you posted this because it serves to remind those of us who are seeking transplants that this is a road that has its own bumps.

The important thing about your particular story is the modality of dialysis you chose.  We all know that true nocturnal hemo gives as good clinical results as cadaveric transplantation, but the advantage of this modality (if there is ever an advantage to any kind of dialysis) is that you are not subjected to the drug regimen you endure after transplantation.  I know there are several members on IHD who choose home dialysis for this very reason.

I assume that the side effects of these drugs will subside over time as the dosages are decreased, and you will soon be feeling much better.  I'm just glad to know how well you felt on nocturnal hemo because, as you know, that's the route I plan to take.

[jbeany]

Hang in there - it will get better!  Don't forget that you've had major surgery, the blood loss that goes with that, a huge dose of anaesthetic, regular doses of painkillers, and a whole lot of stress.  It's going to take some time just to recover from that, and even a person without ESRD would have needed some recovery time to feel normal again.

The med doses eventually get to a normal level, too.  The prednisone is the worst culprit, I think.  Once that gets down to reasonable dose, things go so much better.

[Chris]

While the transplant is a rollercoaster also, the first year is said to be the roughest, but perhaps for some it maybe 2 years. Nothing seems to be peachy after a procedure is done it seems, it's all hype the doctor puts on...lol
 
You did tell your transplant team though about the changes that are going on and how you previously felt. If you do not say anything, then nothing get's done about it. Maybe a dosage change is needed, meaning lowered.
 
Good Luck Tyefly.

[C904]

I agree with the hang in there sentiment.  You are still in the infancy of the transplant and having major surgery.  I am sure you are seeing the docs all the time at this point and keep letting them know how you feel.  I am sure at some point down the line if you keep feeling this way they would try other med options.  For example if you are on Myforic maybe they would switch up and put you on the other manufacturer brand Cellcept.  Also maybe they would reduce a certain amount of a drug.  There are many different possibilities along these lines.

Your body is getting used to processing all the different meds and recovering from the procedure.

Are you on Valcyte?  If you are it can really punish your energy levels.

What about diet?  My center stressed make sure you take in normal amounts of protein each day to heal and get the kidney working in its new environment and to increase energy levels.  I had no idea this was the plan before transplant I just assumed that hey I have one kidney and I better take it easy still on the protein.  You don't go crazy eating a steak for breakfast and two cans of tuna for lunch and a roasted chicken for dinner, but you ramp up the intake from what it was before transplant.  I am assuming this is the same plan for all centers, but as diverse as it appears to be at different centers maybe it is not the norm.

I don't know about anybody else but my Prograf levels were all over the board at the beginning and that can contribute to fatigue.

[tyefly]

yes   I am going to hang in there.....what choice do I have....LOL....  I am taking 10 prograff twice a day...they are trying to get my level up... I think today I am in range for the first time.... yesterday  they reduced my predinsone from 6 to 5 and then on Oct 2 I will go to 4....  I am on myforic as I cant take the cellcept because I take protonix for GERD.... I am also on Valcyte and bactrim ..... its 49 pills per day.....  I take pills all day long and the insulin now..... its crazy.....

Remember those days of well just hook up to the machine and go to sleep......  wake up and I am good to go....LOL....   Yea  I know I just had surgery 21 days ago... ok  so it takes time to heal.....  I seem to have no patience....  kind of in a weird mood.... must be the hating it prednosone stuff....   they say you can have a change in mood....  I seem to be more snappy... I am suppose to be nice......  really I want to be nice....  I have been fighting not taking a nap..... maybe I need to do that every day....   I hate to sit and I hate to nap.....  gee whiz.....  I sound like I hate everything.....   I dont..... I will survive..... I always have...and will continue.....

this was a major rant.....  and I dont rant often.......

[monrein]

Prednisone wreaks havoc on trying to be nice....it will take some time for your body to adjust.  I'm very very sorry to hear about the insulin.   

[MooseMom]

Oh my God...you take 49 pills a day?  I thought I had it bad with 25, but lordy, 49?  Is that the average for someone who is just weeks out of a transplant?  Talk about shake, rattle and roll!  When do you have time to LIVE?  No wonder you are not a happy camper.  Sure, you will survive, but you deserve a good rant, and yours was just great!

[jbeany]

Part of the pill count for any transplant patient is having to take two or three pills of the same med to get to the right dose.  When I was on 2.5 of tacro, twice a day - that's 6 pills.  2 of the 1 mg, and 1 of the .5 mg with each dose.  Myfortic is the same way.  I take a 360 and a 180 twice a day.  So the number of pills tends to be much higher than the actual number of meds.  Two years from transplant, I take 12 pills a day, but I'm only on 6 meds/vitamins.

If you aren't used to your sugar bouncing up and down, that can give you mood swings as well.  I used to be in contact with a diabetic woman on another website.  Whenever her sugar bottomed out, she did things like having screaming fits at her husband about his affair with Angelina Jolie.  He'd be promising to break up with Angelina while trying to convince his wife to drink some juice!

[tyefly]

here's the med list.......   ok   now that I count its 53 plus 4 shots of insulin a day..... plus epo once a week...


5 prednisone
20 prograff
4 myfortic
2 protonix
1 valcyte
1 bactrum
2 metoprol
2 nefedipine
1 simvastatin
1 clotrimazole
2 vit d
1 mulitvite
1 baby asprin
4 magnesium
6 tums
1 stool softner
1 lasix

plus  NPH insulin   20 units morning and 12 units at bed
       Lispro insulin  8 at each meal ( three meal a day) plus sliding scale if sugar is about 150... which usually is 2 to 6 more units each meal... its like 60 units a day.....

I know some of these are just vit but they told me to take these so I am counting them......

its a full time job taking pills...... 

[willowtreewren]

Kathy,

It is coincidental that you started this thread today. Carl was just asking me if anyone else did not feel as good post transplant as before. He has had a number of things "go wrong" that are annoying but not serious. They are all related to having a reduced immune system. First he got a sty that would not go away. Then he got a toe nail fungus and lost his nail. He is fighting a cold and sinus infection that has been dragging on for three weeks (and sapping his energy). He has needed to have "suspicious" patches of skin removed twice in the past 7 months.

I logged on and found your post first thing. Granted, you are still recovering. But Carl wants to know if it gets better after a year. He felt better when he was on dialysis. Like you, he still urinated so he did not have the fluid gain. We worked 10 hours/day all through dialysis, but now after 8 hours, he is sometimes quite tired. Sigh.

Now, having said all that, would we do it again? Yes. but it would have been good to know beforehand what to expect.

Aleta

[tyefly]

oh yes  I would do it again too......  I hope Carl does do better over time..... I want to too...  I think from what most have said on here  they all do better in time....but I think its important that every one knows that transplant isnt a walk in the park.....  it take time to adjust to this way also....No its not a fix....its  trade off...

Carl working around people he may be in more contact with people than me and with that are more potential for infection... I am staying clear of everyone..... and I am going to all winter long.....  I dont want a cold, flu or toe nail fungus....  ( I already have that )... I told my dogs  to not bring anything home from the doggy park..... LOL
thats the only place I go is the doggy park.....the lab  and the doctor visit once a week....  thats enough...

[willowtreewren]

Yes, Carl said tonight that as long as he is working with children, he is resigned to being sick....

Time to retire? 

And I'm having the best school year in a looooong time. Love my class, love my hours, and just love teaching again. Can't win!

 

Actually, I still want to retire in 2014. But not fully. 

Aleta

[jbeany]

Yeah, I think Otto and I can share space as the poster children for the "Transplants aren't all hearts and flowers." campaign.  That's partly what we've been trying to get across here in the transplant section, for those debating their choices. It can be just as tough as adjusting to D, and like D, it can go wrong, too.  I've had docs do the "A transplant will cure all your ills." song and dance for me when I was still on D.  I already knew better, but the info needs to be out there for those who don't. 

Personally, I want to know all those worse-case scenarios.  It makes it easier for me to cope if I'm not totally caught off guard when things do happen.  (Hence my dismay when my surgeon didn't mention the life-long 25 pound weight limit restriction that I'm going to have for the rest of my life until I was nearly healed.  I can live with it - it's not that hard to cope with - but knowing early would have been so much better for me mentally.)

[C904]

here's the med list.......   ok   now that I count its 53 plus 4 shots of insulin a day..... plus epo once a week...


5 prednisone
20 prograff
4 myfortic
2 protonix
1 valcyte
1 bactrum
2 metoprol
2 nefedipine
1 simvastatin
1 clotrimazole
2 vit d
1 mulitvite
1 baby asprin
4 magnesium
6 tums
1 stool softner
1 lasix

plus  NPH insulin   20 units morning and 12 units at bed
       Lispro insulin  8 at each meal ( three meal a day) plus sliding scale if sugar is about 150... which usually is 2 to 6 more units each meal... its like 60 units a day.....

I know some of these are just vit but they told me to take these so I am counting them......

its a full time job taking pills......

I am sure you know by now they keep your Prograf high in the beginning and each doc has his/her style of when they start taking it down.  I bet all that Prograf can't be easy for your body.

What really slammed me was the Myfortic and Valcyte combo.  I did not do the Valcyte for the full six months after transplant because my white count dropped too low.  I was on the Valcyte for four months.  During that intial phase of Valcyte after transplant I was not too bad, but I picked up CMV back in June and had to go back on to it.  CMV has its own problems, but what really knocked me on my ass was for about a month after the CMV had started to wind down I was on two Valcyte a day and two Myfortic and it caused major fatigue.

If my memory serves me correctly on this board and some other spots on the net people have had issues with Bactrim and fatigue.

I am grasping at straws, but do you feel any better once you get moving around and doing something?  After transplant I would feel tired and worn down, but if I pushed myself for a little bit I would feel pretty good.  The hard part was to just get going and it was not easy.

That is all I can think of, everyone can see by your posts you are very active and it has to be a pain to be going through this. 

[jazzin11]

My transplant was three months ago next Tuesday.  My drug regimen was very nearly identical to yours the first month, fatigue very similar. as the drugs have been weaned I feel much better, very nearly normal. Was it worth it? ABSOLUTELY. As for dialysis, I was on in center hemo for three years, wasting four and a half hours plus 1 hour on off time 3 days a week. I work 42-48 hours a week on rotating shifts (nights/days) plus overtime as required. I just had a hard time "liking" dialysis. I work in the oil refining business, so for sanitary reasons, I was not allowed to do PD, thus hemo was the only answer. I literally hated and despised it. I even considered just not doing it and ending it all. Transplant has been the answer for me. The steroids (Prograf, prednisone, and myfortic) will be gradually reduced in time, and the many of the others are for three months or so. So the drug regimen will get much better and you will feel better. I promise!

I was a teacher for ten years some twenty years ago, so I know what you are going through job wise too. Loved the profession, hated the tiny paychecks!

Hang in there!     

John (jazzin11)

[Marina]

  I'm  10months  out.      I  too  felt  better  doing  PD  than  now  with  a  Transplant.     Energy   is  not the  greatest.    Walking  a short  distance  wears  me  out.


I  told  my  Transplant  center  "I  felt  better on  PD  than  I  feel   now  (  that  was  at  6months).   They  reminded   me  that  I had  been  VERY  VERY  sick  post  TX.           I  had peritonitis  and    VRE  (vancomycin resistant  E-coli).   I  was pretty  upset  about having  peritonitis  a  few  days   post  TX.        In  my  6½   PD  journey  I  never  had it,  but  post  TX  I  did.

I  also  suffered  from  gastroparesis   (due  to  that I  was  inpatient  for  a  month.)

At  two  weeks  they  removed  staples,  only  to  have  pus  gush  out  like  a  waterfall out of  incision.
I  required  a  wound vac.   The  would  vac  was   estimated  to  be  on  for  3-4 weeks.        I  needed  for  close to  4months.

The  wound vac  came  off  in  early  Feb.   A  week  later  I  had  pain  in  abdomen.   I  was  once  again  admitted.        I  had  a  fluid  pocket in  abdomen.          I  was  sent home  with   zyvox   (one  of the  strongest  oral antibiotic).                          The  pain  went  away.
  A  month  later,  I had  called  work  to  let  them  know  I  was  ready  to  go  back.                 
One  week  prior  to  going back,  a  got  this  "volcano"  looking  thing    on the  CLOSED  incision.    It  just  kept  getting  bigger  and  bigger  in  a  day's  time.                      It  burst  open  and  pus  gushed out.
Here  I  go  back  to  the hospital.                 It  was  MRSA.   I had to  go under the  knife  to clean  area  out.                     Another  2 months  for  that  new  operated  incision  to   close.

At  6 months  I  started  losing my  hair.          I  was  so  ready  to  buy  a  wig. 
I  started  using  Nioxin  shampoo  and  taking  Zinc  and  my  hair  looks  almost  normal.  Short  but  normal.

So here  I  am  10months  out,  and  still feel tired.  But  mostly  when I  walk  or  clean  house,   Yeah  good  excuse  to have  a messy place.       

I  agree  post  TX  is  not  a bed of  roses,  but  hopefully  once    the  trauma  from the  surgery and  drugs   are  less,  we'll  feel  better.     

Take care

Marina

[jazzin11]

Oh Marina, what an ordeal! I sure hope it is getting better! I have to relate to the hair loss though. My Transplant Coordinator/Surgeon warned me that the tacrolimus/prograf may cause that.  It did! She also said it would come back as we reduced the amount of steroidal use. Haven't seen that yet but am waiting. Did the zinc help? I'd be curious to know.

Hang in there!

John (jazzin11)

[Marina]

Hi  John,

Things  AE   getting  better  everyday.

As  far  as the  hair  loss is  concerned,  I  asked if  there  was  something I  could  do.   The  TX  neph  and  coordinator  told me the  only  way  to avoid  that  was to  reduce  prograf  or  give me  a different  med.
They  said   "we  don't  want to  change  anything  because  both  kidney and  pancreas  are  doing  great, they  might  not  like the  new  drug.    We  can  NOT   reduce  prograf  either,  maybe  in a  yr  or  two  we  can  discuss it,  we  don't  want you  to  lose your  grafts"

They  also  told  me  the  hair  loss  could  be  due to the  trauma  as  well as  all the  heavy  duty  antibiotics  I  was  on.

They  recommended  using  Rogaine.            I decided to  use  Nioxin  shampoo,  and  since they  approved  the use  of  Zinc,  I  take that  tool

 This  regimen    (Nioxin  hair  therapy)  and  Zinc are  working  beautifully!!

Take  care!! 

Marina

[natnnnat]

Yeah, I think Otto and I can share space as the poster children for the "Transplants aren't all hearts and flowers." campaign. 

Gregory would join your club, if he was into joining clubs that is.  For him it was a constant thing for about 2 years, getting his transplant to work and stay working.  He thought getting a transplant would be "the end" of all his health problems, but in fact, no. But he sure likes his transplant. 

[Chris]

I have had problems after my transplant while recovering in the hospital, soon after being released and a few months after, but  mine do not seem as baad as others or I'm just use to having problems within the last 2 years pre transplant.
 
However it's the little things that come up after having a transplantthat I knew where possible and I signed on for when I accepted the transplant. So the rollercoaster ride continues and that's where transplant is known as not a cure, but a form of treatment.
 
Never expect a rosey picture, but when it happens, enjoy that moment more than ever.

[willowtreewren]

Never expect a rosey picture, but when it happens, enjoy that moment more than ever.

Exactly, Chris! 

Aleta

[edersham]

Usually, they give you a huge one time dose of steroids right at the time of transplant or just before. It was probably much larger than the dose you are on now It causes a few days of feeling great and then a big drop off in energy by week 2. A lot of the other drugs you are taking can cause pretty bum side effects as well with prednissone and tacro bring two biggies. I slowly got my energy back in stages at 4 mo, 6mo, one year and now I'm back to pre ckd level at 18 mo. I am now on 1mg tacro morning and 0.5 mg evening. Like many others have said here, hang in there.

Ed

[cariad]

tyefly, that is one crazy load of meds there. I cannot guess the most I've ever needed to take in a day, but would be gobsmacked if it even came to half yours. What the heck are you doing on 20 prograf?? You must metabolize Prograf at roughly the speed of light.... I think the largest number of tac capsules I took in a day was maybe 6? Maybe.

I struggled for over a year after my second transplant. Things will all come right, but I know how hard it is to believe that sometimes. I know that fear so well, that this is it, it won't get any better from here. It is early days yet, try to keep that in mind if it helps ease the worry. Sorry it's been so rough. I sympathize completely.