Sew Stagnant

mc

I have avoided blogging as I’m afraid of my own thoughts.  Things are not going great.  No happy news to report.  Yes, she’s doing a tad better–but it’s all so temporary.  Everyday brings new challenges and fears.  But I really have to get something off my chest.  I cannot keep my mouth shut any longer.

To say I’m disappointed in the whole kidney transplant process here is an understatement.  I’m frustrated with the lack of urgency in testing my living kidney donors.  See, docs want my daughter on kidney dialysis.  I, on the other hand, have resisted for several reasons.  It has been the understanding of the doctors that I want to get her to transplant without dialysis.  Do they agree, no…but they said it could be done.

Well yeah, it could IF people did what they were supposed to do.  Seems the transplant coordinator and I are not using the same clock.  If I don’t follow-up with her, it doesn’t get done.  I don’t make these allegations lightly.  This has been a recurring problem.

So yesterday I got the courage up and documented all of my frustrations.  Reread it about 50 times to make sure I stood behind everything I was stating.  Then I photocopied the two-page document, handed a copy to a doctor on the kidney team and placed another copy in the front of my daughter’s medical records.

Please understand I have not for one moment questioned the doctors’ abilities.  However, I will not tolerate ANYONE playing God with my daughter’s life.  Period.

I will update everyone when I can.  Thanks to the hundreds of friends and family who have gathered around me and my daughter to support us through this most difficult time.  I am truly blessed.

lisasiggie2

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Comments

  1. who needs such a hassle at times like this. I fully understand, it is not about ability,but about cooperation.
    best wishes.

  2. Lisa, I understand your frustrations with the medical team’s attitude (I get that it’s not about their abilities). Even though circumstances were different, when I was taking care of my elderly dad a few years ago, I experienced the same thing that you are, and I found that I, too, had to follow up on everyone because I couldn’t trust them to do their jobs–do what they had said they would do in a timely fashion.

    I’m so sorry that you are dealing with this at such a difficult time. I think you’re doing the right thing by documenting everything that has happened, or not happened, and I will encourage you to stand your ground and continue to bug the dickens out of them until somebody gets on the ball quickly.

    In recent years, I have become more and more frustrated and discouraged by the conventional medical world and have turned more and more to alternative and integrative medicine. Is there an integrative medicine center in your area? I understand that Marielle needs surgery, but there may be some other things that can be tried to help her as she waits for a new kidney.

    Hang in there, girlfriend! You know that I think about you and that beautiful daughter of yours every day.

  3. Oh Lisa, how utterly frustrating. I completely see your point about nobody having the right to play God with your daughter’s life. Nobody.

    Much love and strength to you,

    Kathryn

  4. I’m sorry to hear about your daughter. You need what you need to do and take care of her. I’m hoping for the best.

  5. Like Belinda, we went through this too with our elderly mother. While in rehab for a hip break, she fell and broke the other hip. This was due to them NOT putting in place the precautions they promised us, like floor mats, low to the ground bed, etc. The State of La found no fault.

    After the second hip surgery, we got none of the promised help from this “premier” nursing home she was in. All we wanted was rehab or to go home. They refused to tell us weather she qualiified for rehab until the last of 21 days that she would have qualified, and we had to use their doctor, who also never came out to see her to write her up for home health care. When you asked questions or confronted anyone, you were sent to the “principal’s office” where you were treated like an errant, ignorant child. We finally just got her old GP to write up the home health thing, (another “scam” operation), and he later got her on hospice. They were the only bright spot in the whole process.

    You are doing the right thing, and will likely have to continue fighting. If this is the condition of for profit, pay as you go healthcare with good insurance, I think we are in for a horrendous experience with socialized medicine.

  6. You go, Mama Bear. Marielle looks so beautiful.

  7. Lisa, offering you and Marielle hugs and well wishes from an unknown in blogland. Keep fighting!

  8. My cousin has gone through the transplant process before and was on dialysis for years. I’m so sorry this has been such a frustrating process for you. I hope she gets a kindey without having to go through dialysis! I spent so many hours sitting next to my cousin hanging out during hers and even though we have a lot of fun memories, I know we were so excited when she finally got her transplant!

  9. I am going to be praying for you guys. And I am very proud of you for taking a stand. Your a strong minded woman and when I have children someday I hope to have the determination like you.

    XoXo
    Athena

  10. Lisa, I’m again so sorry you are going through all of this. It just never seems fair. I’m glad you stood up to the doctors, etc. It’s hard for them to understand that YOU are the BOSS of your daughter and her care. Hang in there my dear and God Bless.

    xoxoxo Lynn

  11. You know you guys are in my thoughts and prayers. Please if you need anything at all let me know. (((Hugs)))

  12. I don’t know what to say, but I couldn’t just say nothing. You continue to be there for your lovely daughter, and continue to fight for her and I believe that the Lord will be fighting for you. How can you not win with the Lord fighting on your side. Stay encouraged.

  13. Because of this post I am assuming they haven’t found a donor yet. I would love to be a donor but I am B blood type.

  14. I have been very worried about you, and knew something was wrong when you hadn’t posted in a while ((hugs))

    I am so sorry for all your family is going through,
    is there a patient advocate or liaison department at the hospital,
    I think it would be worth speaking to them, to make your concerns formally known

    I pray that you hear some positive news soon xxx

  15. You don’t know me but I’ve been reading your blog for a few months. I think I came across it while searching for sewing blogs. Anyway, everytime I’ve read about your family members being tested for transplant compatibility, it has seemed to take longer than I would expect, although I don’t know anything about such matters. Just that the urgency sounded like the team should be moving faster to find a match. I don’t understand why they don’t test all the family at the same time, why wait while one after another is being eliminated? I don’t get that. I’m glad you have stepped up to be heard.
    Kathy

  16. Your family is still in my prayers. I know your are so frustrated. I wish I was closer so I could just hug you and be an ear to listen. I’m glad you wrote it all down and they have a copy. They need to know how you feel. But they also need to get ther butts in gear! Life is so precious and the doctors do not see it that way sometimes and that is sad. Keep us updated!!

  17. Lisa, as others have said, I have experienced the same sort of frustrations (with my elderly mother) a few times, and I am sure that when it is such a life or death matter and your only daughter, it must be even more difficult. I have been praying for you and checking on the situation, and I am very sorry to learn that things are moving so slowly. I will pray for a donor and for the medical team to pull for you and Marielle. She is gorgeous, by the way!

  18. Lisa, I have been in your shoes, I understand exactly what you are going through. Keep strong, you are her warrior! My little CHOP man and I will be up there next week, I would love to meet you sometime. Thinking of you and your family. My other son thinks she is too pretty to be sick….

  19. I don’t know you – only through your blog which I visit frequently – and you and your family is in my prayers. God bless you. I hope everything goes well. Don’t lose heart. Fight on! We are all with you.. :)

  20. Lisa, I just spoke to the lady at the hospital and I was told they won’t test any non family members for a match. I can’t even begin to imagine your frustration! Please let us know if this changes!
    Sending prayers!

  21. Lisa, I’ve been reading your blog for awhile. You are a funny outrageous DIVA and your posts always make me laugh, sometimes out loud. Thank you for that. But there’s nothing funny about kidney failure. I was shocked when I read that your daughter has less than 10% kidney function and yet she is not on dialysis. At the time I thought that sounded very, very risky and I didn’t understand it. Now I do. I hope they start dialysis soon and then continue testing her donors. Based on everything you’ve written it sounds like she desperately needs it. All my best to you and your beautiful daughter.

  22. Ugh, that sounds so frustrating and I can’t even begin to imagine. I will be praying for you all…for His perfect peace, healing and wisdom.

  23. As a pediatrician, I want to thank you for making your concerns known to your medical team. So often, people have problems, but those concerns don’t make it to the rest of the team so nothing gets done about them. Your daughter is very lucky she has you–and don’t apologize to ANYONE for doing what you did! Your job is to be her #1 advocate and fight for what she needs. If you keep pressing and fighting to get the coordinator to do her job, you will be saving your daughter AND countless other kids whose parents don’t know how to advocate for them the way you have, or are scared to.

    Keep doing your job! And keep reaching out to others so they can do the same. As a doctor, I”m telling you it’s not only ok to question what we do, it’s necessary, and I for one am glad you are!

  24. My heart breaks for Marielle, you and your family. Every single day I pray she gets her new kidney. Please take care of yourself and know that you all are loved by tons of people everywhere. Marielle…GET WELL SOON!

  25. best wishes. And good for you for speaking out and taking control, may your words be heard!

  26. Lis – you make me want to come down to philly with my grumpy Italian father-in-law (who is a 2nd generation philly doctor) and “question authority”! how they keep you waiting like this?!
    anytime you need anything at all- call me. seriously. if you need ANYTHING. you know you’ve got the “verizon commercial” ppl or MORE backin ya here. just say the word. xoxoxox x 1,000,000

  27. Kick ass and take names, Lisa! You and Marielle are in my thoughts every day.

  28. You do what you need to do Diva~~ you are so totally right!

  29. Lisa..hang in there. It’s great that you’re fighting for your girl. That’s the way it is with the medical profession. You really have to be your own advocate. Stay strong. (((((((((hugs)))))))))))))
    Ingrid

  30. Hang in there mamma bear . I went thru this with my sister …up to last minute as she lay there dying in my arms and the IDIOTS are trying to tell me Im not allowed to be there . AND WITH ZERO COMPASSION as if we were debating an bed pan change or something.

    I wrapped my hands so deep in her hair , if they had tried to pull me off , her head would have had to come off first . I wasnt giving up or letting go , and I was SCREAMING at them, ready and willing to start taking them down with me.

    You have to do the same …..and DONT EFFIN feel bad about it. Shes your baby …you bust out those claws and start swinging…..YOUR GUT FEELING IS NEVER EVER WRONG.

    Forget the letters and START TAPING your conversations with this woman …your daughters life is not a game , and you need to make it clear youll take no prisoners.

    UGG this really pisses me off so badly I want to come down there and start kicking some butts for you .

    Let me know …Ive got some nice boots I can wear. :) Her attitude might change when you start dropping ten tons of NY on her .

    In the meantime, you just stay positive around the beautiful one …it makes such a difference…..

    Hugs,
    Sue

  31. I am so sorry you are going through this kind of thing while your baby girl is sick.. It is all to common htese days though, sad to say but the medical world today is not so much about treating people as they are making money. I too have grown weary with them and have turned towards alternative medicine to get some relief and change. I pray that you have the strength to get through this and that your sweet girl will come through healthy and quickly:)

    ((hugs))

    Lisa~

  32. Hello,
    I am ‘O positive’. in perfectly good health. what do i need to do or where do i need to go in order to find out if i am a match? i live in wv about less than 3 hours away from Philly. Please get back to me as I am seriously willing to help. I know if I was in the same situation with my kids I could only hope that someone may return the favor.

  33. Hello,
    I am ‘O positive’. in perfectly good health. what do i need to do or where do i need to go in order to find out if i am a match? i live in wv about less than 3 hours away from Philly. Please get back to me as I am seriously willing to help. I know if I was in the same situation with my kids I could only hope that someone may return the favorr.

  34. Words sound empty, but please know that John and I are thinking of Marielle and you guys and praying for all of you.

  35. Lisa, This is all so awful. You, Marielle and your family are in my thoughts and prayers always.

  36. Lisa….just stopping by to let you know we are continuously praying for you, Marielle and the entire family. May a donor be found quickly!!

  37. what kind of hospital is that anyway! I have never heard of something so crazy in all my life. I had my first kidney transplant at UCLA and they test EVERYONE! I am getting ready for my second transplant and guess what they test EVERYONE! Also don’t let anyone tell you that you have to be on dialysis before the transplant. I never had to and I am getting ready for number two and still no dialysis. That was just their excuse to buy more time. They figure if they put your daughter on dialysis they can take as long as they want. Terrible they should be reported.. I am so outraged for your daughter.

Trackbacks

  1. [...] Lisa is going through as her daughter searches for a kidney donor, made even more difficult by slow hospitals and redtape and due to the fact that as she’s received a previous organ transplant when she was younger [...]

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