help

[fluffy]

my fiancee just got a transplant last week and the doctors arent telling us anything! they say one thing in the morning and then somebody else tells us the opposite in the afternoon.  They told him that he will not have to take akg i think its called (by intervenus) and now he has to take another dose tomorrow and he says that that makes him crazy.  They dont seem to take our concerns seriously and just shrug eveyrthing off can someone help??? he told to post here that someone might help me

[Rerun]

Stand your ground and make sure they answer your questions.  Say things like "Until we understand this you are not giving it to him"!   

I'm sure others will have better advice!!

[paris]

Could "akg" be IVIG?  If so, it is to help his body accept the kidney (simply stated)    Make sure the doctors and nurses tell you everything and explain in detail.  Get in their face and insist they explain what is going on.  Do you know who his transplant co-ordinator is?  Or his surgeon?  Make a fuss until they tell you exactly what is going on.  Please give "fluffy" our best wishes and keep us updated.    I'll keep you both in my prayers.

[Hanify]

Keep a notebook and write down everything and who said it.  The  if things change you can refer to it and say 'we were told this and that' and ask them to explain why it's changed.  we found it was much easier to question something when you have it written in front of you.

[fluffy]

the problem is im not there when the doctors come in for the 5 minutes in the morning and my hubby cant remember what was said cause of the meds and the nurses know nothing and its impossible to contact the doctors

[Des]

Thanks for posting.. he did send you to the right place.

I am glad to here that he had his transplant!!!!! YEAH!!!!

Does the hospital have a social worker? Maybe you can call in her help to force them to give you more info.

What does he say? How does he feel? Sore? Sick? Is he doing dialysis or did they stop that...?

If  you have access to his medical reconds, request copies and ask your "local" doc to help you to read them.

Good luck and please keep us posted on his progress....

Thinking of you. 

[fluffy]

i have not seen any social worker.  at this time its just the wound thats sore.  he got 3 blood transfusions since there wasnt enough oxyen in his blood.  He did dialisis the first week, so far none this week.  there giving him pregnason and lasexle of other anti rejection meds.  i know his sugar level is good and he started to pee for the first time in 2 years. his creatnin is still high is the only thing i got.

[paris]

Thanks for keeping us updated.   I hope you get more questions asnswered as the days go on.    Peeing is a good thing!  We are all thinking of him and hoping each day he gets better and better.  Give him our best wishes   

[okarol]

I would try to spend the night so you can talk to the doctor's in the morning (I insisted on sleeping in my daughter's room, even though she was 21 years old.)
I would ask if they think he's in rejection, and if a biopsy was done.
I would tell them you need a copy of his most recent lab slip.

ATG treatment side effects are usually offset by a dose of benadryl (that's what they gave my daughter.)

Antithymocyte Globulin (ATG)

ATG is a potent immunosuppressive drug used to treat rejection episodes and steroid-
resistant rejection. The serum, which contains protein taken from immunized rabbits or
horses, is administered intravenously and is taken along with other immunosuppressives.
Be sure to tell your doctor if you have a family history of allergies to farm animals.

Side Effects: The most common side effects are fever and chills.
Please give him our best wishes! Take care. 

[Romona]

Best Wishes to Fluffy! I hope you get answers soon.

[fluffy]

Thanks for helping me and melissa everyone. im home now and i feel excellent (and really sore!) 

[Des]

YEAH!!!!

Is the transplanted kidney working ok?

Are you pee ing  lots and lots?

[Romona]

  I am happy for you Fluffy!

[Wallyz]

COngrats! Prayers and support.  Keep us in the loop.

[paris]

Yea!   So glad to see your post!   It was great to "meet" Melissa and know that you were in the hospital.  I hope she could feel our support for both of you.   Your home and have a new kidney     I am really excited for you, can you tell?   Take care, get some rest and I hope you have to keep peeing all day long!      Congratulations on your transplant   

[pamster42000]

You can sign a paper giving whoever you wish permission to look at your chart. Get a copy of this paper so that person(s) has it with them.  Get copies of blood tests daily so you can monitor what is going on with the kidney function etc.

I would be careful on refusing treatments because then they can judge you as non-compliant which isn't good in the transplant world. Explain you are not understanding what is being done and why. Ask them to explain it in a way you understand. Ask if there is other options.

It is your life and you need to know why certain things are being done. They go home after their shift and go about life as usual  but you have to live with the outcome of any hospital stay. Be informed!!

After your hospital stay get copies of all procedures etc. that were done. Even after regular Dr. visits etc.