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Author Topic: Tell us about Len's checkup  (Read 4772 times)
petey
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« on: September 08, 2008, 05:27:21 PM »

willieandwinnie...
how did Len's check-up go today?  I'm waiting to hear from you.
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willieandwinnie
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« Reply #1 on: September 09, 2008, 01:25:53 PM »

:cuddle; petey. I was going to post last night but we were so tired. Long, long day. We were up at 5 and gone before 8. The trip up to DC was actually kind of pleasant for a change. We got to the hospital about an half hour early and the receptionist told us that our normal transplant coordinator was with the doctor because they had problems with a patient. Well, God smiled on us and we got Emma, we told her we had another appointment after them so she handed Len a urine cup and said we'd draw he's labs instead of him waiting at the outpatient lab center for over an hour. She lets me draw from his graft which he just loves. She went over his medications and the antibiotic that Dr. Gill put Len on for the horrible cold he had. She said it was great that he is so attentive to Len's health. They also stopped his Valycte, he was on it a year, one less pill. After we were done with the coordinator, we met with the Transplant Social Worker (I'm normally not crazy about Social Workers for many reasons) but she is the same one Len had right after his transplant, and she is great. We ask her about his Social Security disability and being afraid they would stop it. She went and got his paperwork and said that since Len was dual eligible (other health issues), that he will continue to receive it. You could tell by the look on Len's face that hearing that was a great relief. She explained things very thoroughly and explained Medicare and Tricare For Life to us. We left her very happy. Our next stop was Dr. Paul (trauma surgeon), who operated on Len about 21 times to save his life. He had a waiting room full. Our 1:00 appointment didn't happen until 2:30. We talked about Len's progress for about 15 minutes and I told him about the pain in the lower belly and groin area and all the test all his doctors have performed. Dr. Paul examined Len, he read Len's file from other doctors and test results and said the pain is coming from the super sized kidney he received. Dr. Paul asked Len about what relieved the pain and explained why it is happening. I swear I love that man. Dr. Paul had said for a long time that he didn't want Len to fly with all the bowel surgeries he had, so we ask again and he said that Len could fly short distances. Yeah!!!!!! Dr. Paul is going to talk to the GI and transplant doctor and we are suppose to call him before we make any flying arrangements. Hell, we can do that. Our final stop was to the Veterans Hospital that is within walking distance from Washington Hopsital Center. Len receives VA disability (service related) and Len has been worried about them stopping his disability. We talk to a Veterans Service Officer and he said that Len will continue to receive his benefits. Oh, thank you God. Len has been so worried about trying to go back to work at 60 and being so tired all the time. We had a very productive day. The trip home was horrible. Bad accident that we were just stuck in for an hour and rush hour to boot. We were so glad to get home and we both thought we'd sleep like the dead, but didn't. Still felt like we were in the car moving. Today, I have done NOTHING....... The transplant coordinator just faxed me Len's labs a few minutes ago. We are so happy and tomorrow we are going to sit down and try to make some plans. One of them is to go to North Carolina and meet Marsha and Marvin and see about flying to Texas to see our aging friends that can't travel anymore.

Len's numbers from yesterday. Creatinine 0.09 - BUN 15 - Total Protein 7.5 - Albumin 4.4 - Calclum 10.3 - WBC 8.35 - Prograf 5.4 and No protein in urine. These are the best labs that Len has had in almost 8 years. I am so relieved... We have been told that whatever we are doing to keep it up.

Sorry this is so long winded. I just had to tell you. petey, were you an angel in a past time?  :cuddle;
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okarol
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« Reply #2 on: September 09, 2008, 01:29:53 PM »



That's a great report WAW - I am so happy I could cry!

 :yahoo;
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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
thegrammalady
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« Reply #3 on: September 09, 2008, 01:32:23 PM »

 :yahoo; so excited, such good news
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Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

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For You Are Crunchy And Taste Good With Ketchup
petey
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« Reply #4 on: September 10, 2008, 05:44:11 AM »

Great news, willieandwinnie!!!  You made my day, and I feel happy all over! 
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paris
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« Reply #5 on: September 10, 2008, 09:26:42 AM »

What a great day!  Sounds like you got lots of good news.  It is about time and now I hope Len can stop worrying about disability coverage.  The stress can be overwhelming.  You have certainly taken such wonderful care of Len, and been his best advocate.    Give him hugs from us  :grouphug;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Romona
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« Reply #6 on: September 10, 2008, 01:42:44 PM »

Cutting the Valcyte will make a big difference. It takes time but Len is getting there! I hope thing continue to improve.  :2thumbsup;
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Joe Paul
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« Reply #7 on: September 10, 2008, 02:14:54 PM »

 :thumbup;  Glad to hear things are going well.
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
monrein
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Might as well smile

« Reply #8 on: September 10, 2008, 02:35:21 PM »

Great checkup and that's always good news.  :cuddle;
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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
David13
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« Reply #9 on: September 10, 2008, 02:46:17 PM »

Sounds like a productive and happy day!  So glad things are going well.  Keep up the good work!    :clap;
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twirl
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« Reply #10 on: September 10, 2008, 02:47:09 PM »

kiss W&W for me and shake Len's hand :beer1;
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2_DallasCowboys
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« Reply #11 on: September 10, 2008, 02:53:05 PM »

So happy for the both of you! 

His labs are great, and can imagine what
a big sigh of relief you both let out after
talking to the social worker!

Anne
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willieandwinnie
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« Reply #12 on: September 10, 2008, 03:15:59 PM »

twirl, how about I shake Willie and Winnie's paws and kiss Len. Sounds like more fun for me........
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monrein
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Might as well smile

« Reply #13 on: September 10, 2008, 03:28:10 PM »

 :rofl;
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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
G-Ma
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« Reply #14 on: September 10, 2008, 03:30:05 PM »

Great news..I am so happy for you.
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
petey
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« Reply #15 on: September 10, 2008, 04:21:45 PM »

twirl, how about I shake Willie and Winnie's paws and kiss Len. Sounds like more fun for me........

Oh, what the heck, willieandwinnie!  Give all three of them a great big kiss (Len first, of course) -- and don't forget about Mouse!
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pelagia
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« Reply #16 on: September 24, 2008, 03:31:20 PM »

I am still catching up after my two weeks away...

Kisses and hugs from me for all!  :-* :cuddle;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
lola
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I can fly!!!

« Reply #17 on: September 24, 2008, 03:40:13 PM »

 :bandance; :bandance; :cheer:
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willieandwinnie
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« Reply #18 on: September 24, 2008, 03:43:07 PM »

 :thx; I don't know what I would do without all of you. This has been a long trip for us and having all of you for information and support has made it easier for me to take the best care of Len.  :cuddle;
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okarol
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« Reply #19 on: September 24, 2008, 07:37:00 PM »


I think about all the challenges you faced and it's such a joy to see how far you've come!
Best wishes to you both!  :yahoo;
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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
willieandwinnie
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« Reply #20 on: March 11, 2009, 11:50:17 AM »

:thumbup; Len went to Washington Hospital Center for his 18 month checkup. His creatinine was .07 but his potassium was on the low side. The transplant coordinator hadn't gotten his prograf level back when we left so she said she would call us. I did learn something very interesting through the attending Neph, he said that sometimes the Vegus nerve can get cut or nicked during transplant and that it can cause lots of GI problems. I had never heard of that before so I am going to do some research. Len and I are both exhausted from the trip yesterday, so he is laying down but unfortunately I had to go get grocery's so I'll relax when I get done putting stuff away. Len has to go back to see transplant folks in Sept for his 2 year and then she said they would see him once a year.  :yahoo; for that. We had a foot of snow 1 week ago on the ground and today it is 75 and breezy out. I think I'll go out on the deck and chill with the paper. I am truly blessed to have found this group.  :cuddle;
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Romona
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« Reply #21 on: March 11, 2009, 01:29:03 PM »

 :yahoo;
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pelagia
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« Reply #22 on: March 11, 2009, 04:50:23 PM »

 :flower;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
cookie2008
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« Reply #23 on: March 11, 2009, 05:14:49 PM »

 :flower;
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Started PD in 11/07
Started Hemo in 7/08
Started NxStage 5/09
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