General
New member with neat story :-)
Hello new TransplantLyfe friends! I am a two time kidney recipient and have a pretty fun and unique story. I was invited to join this community and share my story so here I am!
I met my current husband in 2012 when I sent a text and got a wrong number. I was traveling for work in Denver and I was texting someone in St. Louis where I live. The person who replied to me was so polite, I replied and one thing led to another and we connected on "The Law of Attraction" by the 6th text. We met a week later and fell in love. I was 52 at the time and he was 23. He ended up being my donor in 2019 as a perfect immunological match (no antigens matched but the doctor said I should never reject it!). We''re a one in a billion story that was recently told on this episode of the NKF Illinois podcast. We've also recently been on the Tamron Hall Show searchable as "She text a wrong number..."
We're 63 and 34 now and just celebrated the 11th anniversary of when I sent the text.
Enjoy! So happy to have been invited!!
https://open.spotify.com/episode/5RwbZ3ET0JNYUuvlWEgdw1?si=sxZypCCRSxGj8M25Li7YbA
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Incredible kidney miracle story 🤗
Transplant Patient
That’s insane! What an amazing story!
Wonderful story. Most of all your ❤️❤️ story to. 🇺🇸🧨
My younger husband was also my perfect kidney match a year ago on June 15th 2022 my surgeon said he had never seen such a close match he suggested we make sure we aren’t related lol 😂
Oh I love to hear this!!! Young husbands are awesome! Yay for yours :-) Cheers to us :-). What's your age difference?
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Deb, I may have the wrong” Deb”but did u have a liver biopsy b/c of bad lab results.
Melsamm,
Yes I did on Thursday. Not what I expected at all. They went through my jugular vein to do the biopsy. It was quick and painless. I watched the entire procedure in a big screen. My results were not good. I’m experiencing rejection right now. My doctor has ordered prednisone and cellcept and I’m praying this can be reversed.
Yes I am praying for you, I am on the sane meds and my rejection is back on track again. I was told if they catch it early it can be reversed w/no damage to the liver.
I am thinking about you I am 2.7 months out now😊💚
Oh thank you so much for the prayers. My insurance finally approved my Cellcept so hopefully I’ll get back on track soon Prayers you stay healthy and thank you again!!
Deb, I know you will, I hope you were not w/o your celcept due to your ins. I am so frustrated w/insurance paying for immunosuppressant meds. I hope u did not have to go w/o your meds at any point.
Sending you positive vibes all is going to reverse with your liver.🙏🏻🙏🏻💚💚 take care
My doctor sent orders in Friday and I’m still waiting on my pharmacy to fill it but yes I’ve waited for insurance approval and with insurance I’ll have to pay over $230 for 30 day supply it’s crazy!!
Omgosh Deb that is awful does your TP offer any kind of assistance. I had to call my social worker she was able to get me some assistance for my meds. That is a lot to have to pay each month. I take 4/4 of celcept 3/2 tacro.
I see at least one of you here is from the States. Did either of you (who live in the states) get on Medicare? If you have ESRD you are qualified for medicare. I didn't get Medicare until after my transplant, but got it retroactively dated back to when my transplant was. Medicare FULLY covers your immunosuppressant(s) after transplant for three years. This for me is (until 6/2024) a savings of almost $1,000 per month! I am on both Cellcept and Envarsus and I dont pay anything for these currently. Talk to your financial coordinator with your transplant team. They should also be able to help in filling out the necessary forms for Medicare for you. If thats not an option, for some strange reason, talk to your transplant pharmacist about options through the pharmaceutical company or other options they may have and know about to get the cost to a manageable level.
Hi poison rose, unfortunately MC does not help Liver Transplant patients the only way MC will cover meds for a LTP is if you had your LTP surgery on MC the age is 65. I think it’s ridiculous, they have help w/meds for kidney TP but not liver I have been thru it w/MC. Totally agree my financial coordinator and social worker helped me. I was able to get some meds thru the pharmaceutical company for my prograf/celcept, have a small co pay.
Another option is Mark Cuban cost plus. I am just shocked that the immuno meds are so expensive even tho we have ins. We have to have these meds to live.
I just hope everyone gets help.💚😊
I was able to get in Medicare as well. Luckily I’ve reached my deductible so my new meds didn’t cost as much as they quoted me. My transplant center and coordinator has helped me so much as well. It’s a juggling game for sure.
Deb, I am so happy to hear this, you r not kidding about a juggling act.
I am hoping you will let us know how u r and I am 🙏🏻🙏🏻 that your numbers will come down like mine did. TP coordinators , social workers and financial are the BEST I do not know how I would have handled this LTP w/o them💚💚 this journey is a lot.
Thank you for kind words and support. I would lost without my coordinator. I’m hoping for good labs next week or at least better ones. The side effects of these meds makes appreciate how well I was doing before this setback. Have a blessed day and I will update next week. Keep those prayers coming. ❤️🙏🥰
Deb, completely understand I to was feeling so good to, the meds definitely set you back, each time I go to clinic I hope they will start decreasing them.
Yes please do, I have you on my prayer list. 😊💚❤️
🤗 You got this Deb! We're all warriors in this battle!
Thanks!! I need positive vibes!! Bless you all!! ❤️
Transplant Patient
So incredible and it gives me hope in humanity! Would love to meet you both at some point - feel free to reach out to me per email karin@lyfebulb.com
Transplant Patient
@Deb and @Melsamm so nice to see how you are helping each other! Good luck! Let me know if I can help too
Thanks Karin I am just glad that I can help Deb , I just know how she feels. You have done so much to have a place where we can share our journeys thru transplantlyfe😊💚
@Karin i am so thankful that you created a space where we can ask questions, get advice and get much needed support. Our transplant teams are great but until you’ve “been there, done that” you just don’t know first hand what we are going through. Thank you so very much.
👍 totally.. we got this TP group with each others support.💚