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Author Topic: My mom's date might be moved up  (Read 4258 times)
Beth36
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« on: May 16, 2008, 06:40:41 PM »

She and my sister had to do another cross match and the nurse told my mom her numbers were well under 200 (Tcells in the 140s and Bcells in the 160s) so if she wanted to, she could have her transplant before the 10th of June, granted they cleared it with the surgeons.  I have not heard my mom so happy in a while.  It's been an extremely emotional and stressful year waiting for her kidneys to get bad enough, testing, waiting, and more waiting for the transplant.  I can't believe she will have her transplant soon!  I feel so much better now.  I just hope it all goes well and the recovery is smooth for her and my sister.  The bad thing is, if it's earlier than the 10th, I can't go....I have 2 doctor appointments (perinatologist--to find out what the sex/sexes the twins are! and and regular OB appt.) and I don't want my dad to be there alone.  I will go anyway after the surgery to help out and to see my family.  What are some things I should bring?  Should I stock up on Purell and antibacterial wipes?  I'm trying to figure out some sort of care package for them.  It will be wonderful once things are OK and we are back to a semi-normal life but once it's quiet again, I'll be having these babies and my whole world will be wild!


Beth
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Mom had positive crossmatch transplant at Mayo Clinic on 6/13/08!!
paris
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« Reply #1 on: May 16, 2008, 06:55:50 PM »

Beth, I am so happy for all of you.  I will mark the date and start saying lots of prayers for you Mom and sister.  And for those sweet babies!   I am glad it has finally all worked out for the transplant :cuddle;
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Sluff
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« Reply #2 on: May 16, 2008, 07:53:56 PM »

Great news! I hope she gets the earliest date.  :grouphug;
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Jill D.
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« Reply #3 on: May 17, 2008, 02:01:34 PM »

So exciting for your mom and your family! I will be out at Mayo June 16 -18 for a check up; maybe I will see you! Have your mom and sister looked into staying at the Gift of Life Transplant House? I highly recommend it for your mom, as they have very high standards for cleanliness and disinfecting procedures, etc. - not to mention the support from the other patients and caregivers, the hominess, and the cost ($25/day). I have my name on the list to stay there when I come out for my checkup.
If your mom is not staying at the transplant house, be very wary of staying at one of the older hotels. Some that I visited when I was looking for a place for my parents (they stayed in Rochester for 4 weeks of my stay) smelled very old and musty - that would not be good for your mom. They ended up staying at an Extended Inn, which I think was $1600 for a month, which was new and nice, but they would have to drive and park or take the shuttle to the clinic. Frankly, I couldn't have stayed in a hotel for 6 weeks - I would have gone crazy and I think I would have gotten depressed. The Transplant House is only 2 blocks from the clinic, so I would either walk or have my husband drop me off for my daily plasmapheresis and IVIg - very convenient! Remember, your mom will only be in the hospital for 5 days or so - your sister probably only 2 days and she will probably only need to be out there one week. My sister came out on Sunday, the surgery was Tuesday, she was out of the hospital on Thursday and flew home on Saturday! Your mom will probably be there 4 - 6 weeks. Your mom will need to have a caregiver with her at the Transplant  House (which I'm guessing would be your dad) and your sister would need one too if she stayed there (they would be in different rooms). Family members can visit - except no children under 17. My parents would basically hang out at the Transplant House all day - watching TV, doing puzzles, reading, napping,  making and eating meals with us - and go back to their hotel at night.

As far as what you bring, frequent handwashing and proper food handling are the best things you can do to protect your mom (that is another benefit of the Tx House - full kitchens to make your own food - I would be iffy about eating out all the time right after transplant). I think in another thread many suggestions were made about care packages and what I found was I didn't want much of anything that I was going to have to bring home. I mainly read books, was on my laptop (Mayo has wireless almost everywhere!), did puzzles, watched TV. I watched a lot of movies when I had IVIg - it would take about 3 hours every day and the TV's there all had movies on-demand. If she stays at the Tx House, there are magazines, books, movies, puzzles and games galore. I made a big mistake about bringing a bag of books with me! Mainly take things she would like: a new robe, comfortable clothing (I wore sweatsuits and stretchy things because of the incision), lotion, snacks she loves, thank you cards and stamps - things like that!

Wow! What an exciting year for you! Take care of yourself and your babies. You will be surprised how quickly things go back to "normal" for your mom and then you and your babies can be the focus for everyone. Your mom wil love that, I'm sure!! :cuddle;
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Diagnosed with FSGS in1990.
Started hemodialysis in April 2006.
Received a new kidney from my sister on Dec. 5, 2006.
Transplant rejection in March, 2009
Approved for second transplant in May 2009
Sister-in-law approved as donor in Dec 2009
Beth36
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« Reply #4 on: May 18, 2008, 03:37:36 PM »

Thank you!  I can't remember the name of where they are staying but it is connected to the hospital and my dad is getting a suite.  One room for them with a king and the other bedroom has 2 double beds (I'm staying in there with my sister when I visit).  It was pretty pricey but has maid service every day.  I asked him if they had grocery service because one of the places I looked at had it and it was free--I'm pretty sure you have to pay for the groceries but that would come in handy with cooking, etc....and avoiding going out (thanks for that tip!).  When I come, I'm not bringing hubby or my 3 year old (my 3 year old is hell on wheels at this point), so that'll be good....the babies kinda have to come with me a this point ;D  I'll be sure to tell my mom about the wireless so she can bring her laptop and my sister will want to bring hers, too...cool.  My mom is a sudoku nut and I'll try to find her some books and some crosswords, she likes those, too.  I got them new pjs but will be on the lookout for more.  I love pjs!  We find out tomorrow if she has her surgery earlier...she has to call Kay and get that info.  We're excited and glad to have this behind us and focus on getting her (and keeping her) healthier and better.  I want her to be here when the babies arrive but understand if she can't.  My hubby is great with burning dvds and sending video, so she'll be set until she can come visit.  If I were her, I'd wait a bit because I know my house is going to be massively chaotic for a while--or forever, however you want to look at it!  So glad you are having continued good health, Jill.  You are truly an inspiration to my mom and to me.  Paris--thanks for the prayers!  I have been so stressed and worried, I just hope things work out.  Sluff--thanks for the good wishes.  I'm not gonna name one of the twins Sluff but I hope they're both as nice as all of you here!


Beth
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Mom had positive crossmatch transplant at Mayo Clinic on 6/13/08!!
Jill D.
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« Reply #5 on: May 18, 2008, 05:31:45 PM »

You sound very well prepared - the hotels that are attached to the clinic are very nice and that is so awesome that you will all be staying together! It is normal to be scared and worried about the great unknown whenever someone has surgery, especially when it involves two family members. I approached it as a great "adventure" - in fact, when I had my appointment with Dr. Gloor prior to surgery he asked "Are you ready for your adventure?"  ;D I cracked up! It definitely helped having doctors and staff who were kind and so invested in wanting to make sure all went well. Plus, my sister would say things like, "I've been talking to my kidney that is staying, trying to prepare it for the single life. I've told the other that it is moving to a nice neighborhood and not to be afraid of the nearby neighbors that look like raisins."  :rofl;
Please keep us posted - even PM me if it looks like you will be in Rochester during June 15 - 18. I would love to meet you and your family!
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Diagnosed with FSGS in1990.
Started hemodialysis in April 2006.
Received a new kidney from my sister on Dec. 5, 2006.
Transplant rejection in March, 2009
Approved for second transplant in May 2009
Sister-in-law approved as donor in Dec 2009
monrein
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Might as well smile

« Reply #6 on: May 18, 2008, 05:42:55 PM »

Best of luck to all of you Beth.  I can't believe all the excitement converging at the same time......from babies to transplant.   I like taking my own pillows to the hospital because I use a tempurpedic pillow and a bucky (filled with buckwheat) and I feel comforted by them in an odd kind of way.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
Beth36
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« Reply #7 on: May 18, 2008, 06:14:37 PM »

Thanks for the tip, Monrein!  My mom and dad always always always take their own pillows with them when they travel, etc...they looooooove their pillows  :urcrazy; I don't blame them, though...

Jill--I will definitely try to get a PM to you and try to meet up with you in Rochester....if I forget, if you see a hugely pg woman who is loud and crazy.  That would be me.  By the way, I loved the pic you used to have with the kilts.  My dad and brother wore kilts in my wedding!  I've been trying to find one for my son but I doubt he'd want to wear it.....

 :grouphug;

Beth
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Mom had positive crossmatch transplant at Mayo Clinic on 6/13/08!!
Beth36
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« Reply #8 on: May 22, 2008, 07:17:37 AM »

Well, my mom has to do one more crossmatch and if her numbers are 200, she'll need plasmapheresis on June 5, so they're leaving for Mayo on the 2nd after they drop their samples off at Fed-Ex.  I've booked my plane ticket and will be there June 8.  They check into the hospital June 9th and the transplant will be June 10.  I'm hoping there are shuttles to Mayo (and surrounding hotels) from the airport or else I'll take a cab.  I'm excited and nervous.  We're ready for this to happen so my mom and sister can recover.  My 3 year old is making posters for my mom and sister for me to take to the hospital.  I'm also going to start my care package gathering.  I'll update as soon as I can!!  Thanks for everything!


Beth
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Mom had positive crossmatch transplant at Mayo Clinic on 6/13/08!!
xtrememoosetrax
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« Reply #9 on: May 22, 2008, 07:27:39 AM »

Wow, Beth! This is exciting! Best of luck to all of you! 
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Living donor to friend via 3-way paired exchange on July 30, 2008.

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paris
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« Reply #10 on: May 22, 2008, 08:33:14 AM »

Beth, I am so excited for all of you. Please let her know that she will have lots of people praying for her and your sister on June 10th.   Take care of yourself during all of this.   :grouphug;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Jill D.
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« Reply #11 on: May 22, 2008, 08:22:57 PM »

So exciting!!!! :yahoo;
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Diagnosed with FSGS in1990.
Started hemodialysis in April 2006.
Received a new kidney from my sister on Dec. 5, 2006.
Transplant rejection in March, 2009
Approved for second transplant in May 2009
Sister-in-law approved as donor in Dec 2009
Beth36
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« Reply #12 on: May 29, 2008, 07:55:54 PM »

Well, my mom got her letter from Mayo telling her everything she needs to do and when they check in, yadda yadda yadda....she's very excited/nervous/anxious and my sister is as well.  Now, I just have to get my house ready for the in-laws and write out little man's schedule for them as far as swimming lessons and how to get to the nearest park so they can escape.....we found out today that both babies are girls and it really upset my son, he screamed, "NOOO, I wanted a brudder!" when he found out they were both girls but he'll be OK.  He's just excited to have someone to play with later on.....I'm starting to get nervous but I think it'll be fine.  I can't believe it's almost here!!


Beth
« Last Edit: May 29, 2008, 08:29:21 PM by Beth36 » Logged

Mom had positive crossmatch transplant at Mayo Clinic on 6/13/08!!
monrein
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Might as well smile

« Reply #13 on: May 29, 2008, 08:02:59 PM »

All the best to the whole family Beth.  Quite the adventure for so many of you. :grouphug;
Logged

Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #14 on: May 29, 2008, 09:47:16 PM »


Lots of excitement for your family!  :2thumbsup;
When we were at the pain clinic at Mayo they had a great shuttle service. Also all the underground tunnels connecting the buildings made it easy to navigate around.
Saying a prayer that all goes well! :cuddle;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
rose1999
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« Reply #15 on: May 29, 2008, 11:04:14 PM »

 :2thumbsup; wishing all of you the best with everything  :grouphug;
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paris
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« Reply #16 on: May 30, 2008, 06:49:21 AM »

Beth, you know I keep your whole family in my prayers everyday.  So many positive things happening at one time.   I can't imagine how excited your Mother is.  She will be feeling so much better when those sweet little girls come into this world.  What an amazing time in your family history.  Take good care of yourself and those precious baby girls.  Sending you lots of love :cuddle; :cuddle;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
okarol
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« Reply #17 on: June 02, 2008, 11:08:46 PM »


Hey Beth, just thinking of you guys!  :cuddle;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Beth36
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« Reply #18 on: June 03, 2008, 06:30:38 PM »

Thanks everybody!  They are on the road on the way to MN.  I think they'll be there tomorrow, it all depends on where they stop but they should be there sometime tomorrow afternoon.  I'm starting to get really nervous and a little stressed but I can only imagine how my mom, dad, and sister feel....eek....my brother is coming to Mayo, too.  He'll be there on Monday.  Our other sister can't make it but we will keep all posted.  I just hope I can get a good chocolate malt somewhere....that's my biggest craving!! I probably won't be able to post until after I get home next Saturday about the transplant but will as soon as I get home!!  Thanks again!!!  :grouphug; :grouphug;

Beth
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Mom had positive crossmatch transplant at Mayo Clinic on 6/13/08!!
Jill D.
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« Reply #19 on: June 14, 2008, 08:02:01 AM »

Hi Beth,

I've been thinking about you, your mom and your sister (and the rest of the family!) I hope all is well.

 :grouphug;
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Diagnosed with FSGS in1990.
Started hemodialysis in April 2006.
Received a new kidney from my sister on Dec. 5, 2006.
Transplant rejection in March, 2009
Approved for second transplant in May 2009
Sister-in-law approved as donor in Dec 2009
Lori1851
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This is me Lori , Dustin's mom

« Reply #20 on: June 14, 2008, 05:23:05 PM »

I am so excited for your mom , sis and the whole family!!!!! I will pray everything goes peachy!!!!!!

Lori/Indiana
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