Worried about my sister

[Prelude_Sarah]

Hello my lovely donor family.  I just wanted to vent a little bit here.  As most of you know, I donated my left kidney to my younger sister about 12 weeks ago (on May 10th).  Up until a week ago, my sister had been doing great.  But last week, she started throwing up and since hasn't been able to really eat or drink much.  She's been to the hospital several times so they can re-hydrate her, but they haven't been able to figure out what's going on.  The doctors think she may have caught some kind of bug.  Her creatinine went from being stable around .9 to 1.9 I'm just so worried I can't stand it. 
She doesn't eat enough in general, and she is in a terrible routine of staying up all night and sleeping all day with little to no activity.  She doesn't work or go to school, so she can get away with this. 
I just hope to God she can learn how to take care of herself better, and that my kidney can stick it out with her.  I've been doing my best to take care of her, but sometimes it's difficult because she's very very cranky when she doesn't feel well. 
It's hard to be waiting on someone hand and foot when they say things like "Don't touch me!" or when I come to knock on the door to check on her "GO AWAY!!!"....I know she's just not feeling well, but it just feels awful.
I learned that worrying doesn't help anything, so I'm doing my best to cope with the situation and believe that it will all turn out right. 
I just needed to express this, and you guys are the best listeners I know of.  Thank you for being here!

Much love,

Sarah

[Orchidlady]

I am so sorry to hear you are both having troubles! I know what you mean - you already care about the person, and the donation makes it so you feel even more responsible for them. Don't take it personally, Sarah. Everyone gets pretty snarly when they don't feel well. I am sure they are monitoring the creatinine. The fact that she has been dehydrated will raise it, and also being sick affects that as well as other numbers. My husband gets monthly blood work and has to call in his vitals. They told him that if he ever has been sick when that monthly draw was done, he should also give that information along with the vitals, because it can cause other numbers that they monitor to be out of whack.  Take deep breath, calm yourself, and know that you are doing the right thing in being there, and being supportive.  All the best to both of you. Keep us posted.

[Clark]

Oh, Sarah, this sounds really hard on you both!  Are there more family and friends who can help you both?  Do take care, your fears for her and for your gift to her are real, legitimate, and and will wear on you both.  I hope you can find a way to supportively engage with each other, but the feedback of your worry for each other must make that very difficult.  We're here, we understand.  Have you searched for a local donor buddy?  Best wishes.

[Snoopy]

Hi, Sarah.
  When reading your post, all I could think of was, "ouch". 
  Is there any chance you could convince your sister to "talk to somebody", such as a psychologist?  Is there any post-transplant psych or social work-type support from your center available?
  Hang in there!
       Snoopy

[dodger]

Sarah,

I agree with Snoopy.  Both of you are very young to be faced with so much responsibility, but, it sounds like she has a tendency to shut down and shut out.  Neither of which are healthy for a normal healthy person. We are all allowed to have pity parties, especially when not feeling well, but to shut out the people that are helping and caring for you, well, that is harsh!  She needs to be treating the entire body, not just her kidney issue.


Does she hate her life, is all of this overwhelming, is she ever happy, is she out going, is she taking charge of her eating right, is she in denial?  These are just some of the questions that need to be asked.  Has you family been handling her as being special, putting up with unsuitable behavior, no responsibility, or being too hovering?  Easy to happen giving the circumstances but again, perhaps not healthy.  Maybe the entire family needs to go in for some counseling, just to get a handle on this so you can all cope.  Life is what you make of it, if it is to be, it is up to me.  If her life sucks she needs to change it, but needs to learn skills to do that, that is where the counseling will come in.  I'll get off my soap box now, but please know that this is coming from my heart and from life and family experience.  Janice

[lawphi]

My husband was transplanted a few weeks before your sister and still sleeps a lot.  I was told it takes one month to recover for ever hour you are in surgery.   He has days where he is full of energy and days where he needs to sleep. 

The heat has taken a lot out of my husband and he has been hospitalized for dehydration.

[Scott337]

Sarah;

Christine Robinson (Living donor) has a blog she writes (so well I might add) called "Beside the quiet voices" and I've included a link to one of her blog stories about recipients.  I was so inspired by the Christine's thoughts and words regarding her son's kidney transplant, I felt compelled to send this to the family of my recipient several days ago.  I would encourage you to go to the link and read the article - maybe it will have some relevance to you and your sister's situation now.  Enjoy and heal my friend - it will all be alright.  God Bless

http://christinerobinsonvoices.wordpress.com/2011/07/17/transplant-recipient-the-right-to-take-ones-health-for-granted/

Scott   

[Prelude_Sarah]

Thank you all for the support and words of wisdom.  Orchidlady, it's so hard to watch your loved one go back and forth with this stuff isn't it?  I know I've been in the healing process for 12 weeks now too, but I'm already so much more active and healed up than my sister.  Clark, luckily, we do have other friends and family that can help out.  My sister and I both live with my dad, who is an amazing support to both of us.  Fortunately, when my sister starts feeling better, she is very thankful for our help.  But in those moments when she's not feeling well, it takes a lot of patience on everyone's part.  Snoopy, I think you're absolutely right; my sister would really benefit from talking with someone, but it may be hard to convince her to do so.  Lawphi, I'm sorry to hear your husband has also not been feeling well this summer.  That heat is so brutal!  If it's too hot, my sister basically wont leave her room!  And I don't blame her.  I'm a really healthy and active person normally (when I'm not healing up from kidney donation! lol) and this heat has been taking it out of me as well.

Dodger, as hard as it is to admit, you've got the right impression about the situation.  She's been sick since she was 8, so my older brother and I (she's the youngest) have always kind of hung out on the side lines, "sucking it up" so to speak.  She has gone through phases in her life where she is so completely dependent so often, that it has become a normal pattern in her life.  But then sometimes I think she really wants to feel like an adult and fend for herself to a degree, so she gets fed up with us and pushes us away.  It's been a challenge to find a balance between being supportive and helpful to her, while still trying to avoid "babying" her, because I'm well aware that it's not good for her, or anyone else.
I try to encourage her to motivate herself to find more joy in life, more and inspiration to be active and really take control of her life.  I see signs every once in a while that she is on her way to doing that, but every time she gets sick, she sort of reverts back into that same old depressed, hopeless attitude.

I feel bad talking about my sister like this, but it feels really good to have a place where I can be honest about these things.  Because it's such a sore spot with my family, I rarely talk to any of them about any of this.  My brother and I discuss it sometimes, but I think we both have this sense of guilt bringing it up because SHE is the one who has been sick, and neither of us have ANY clue what it's been like for her to have to fight for her life every single day.

Anyway, sorry for the rant.  As of today, it appears as though she's feeling a little better.  I'll keep you all updated about her numbers.

And Scott, thank you for sharing that blog, and please know that you're in my thoughts as you and your recipient grieve the loss of your donated kidney.

SO much love to you guys!

Sarah

[Aries7]

Oh Sarah! I am hoping your sister is feeling better. That is a tough and frustrating situation. It may may also be possible that she is a bit crabby because of some of her medicines. After my husband's transplant, we were told that some of the immunosuppressants can make the person kind of cranky. I thought he was a bit crabby for a while after surgery, but he has since got back to his old self.

It is also possible that if she has been sick since she was 8 years old, she may not know what to do with herself as a well person. It may be helpful if she had a counselor that she could talk to. As far as creatinine will go up if she is dehydrated.

Hopefully, it is just a bug she caught and it will go away soon. If her behavior then continues, hopefully she can be encouraged to go talk to a counselor or psychologist about how she is feeling and what is going on in her head.

Hang in there. You are such a wonderful person - she is very fortunate to have you as her Sister. Please continue to keep us posted and feel free to vent here as much as you need to!

Hugs to you!
Linda

[lawphi]

Sarah:  I would seriously consider counseling or more venting .  My sister suffered a head injury as a child and I understand the effect a sick sibling can have on your family.

Also, I imagine you recovered quickly due to your age and size.  My recovery was 1/6th of what my center prepared me for.  I imagine you are a survivor and it takes a lot to knock you down.  You stepped up and donated a kidney to your sister at an age that most would never consider. 

I remember reading your posts before my surgery for any tidbit of information on pain description or experience.  Your posts were selfless and often focused on your sister. 

[Fr Pat]

Dear Sarah,
     Mary Wu is a wonderful young lady I met at the last "Transplant Games". She has received two kidney transplants from deceased donors, one as a little child, the other as a teenager. She is writing a very honest book about all the dreadful ups and downs she went through with her family during her illnesses, transplants, recoveries, etc. and is posting it a chapter at a time. You might want to look it over and see if it might be of interest to your sister. She might like to read of how someone else her age went through these things. Mary is now very active in edcation/promotion regarding transplants, and would probably be very willing to communicate with her directly if she wishes.
http://kidneyconfessions.blogspot.com
      Fr. Pat

[APV]

I really hope things get better soon both for your sister and you.   You are a great sister!

Angelica

[Snoopy]

Sarah,
  I'm glad your sister is feeling a bit better.
  I apologize if this is a dumb question, but...does your sister have access to an online support group, for recipients, on which she can vent, and get help from those dealing with similar stuff?
   Be well, Snoopy

[stevewin@windstream.net]

Sarah,it is tough at times when you are trying to help someone you love. .at times i do not understand my brother after i donated a kidney to him over 5 months ago. i donated and did not add on any maintance medications but my brother has a lot and i know that it has effected him in ways i cannot understand.being there for her is the biggest and one of the best things you can do for her. things will change after more time has gone by. this LKD family/group is here  for you!    steve

[Snoopy]

Sarah,
  How are you and Sis doing?  I hope both of you are feeling better.
       Snoopy