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Author Topic: Looks like today is my day!  (Read 3042 times)
tigtink
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« on: September 12, 2019, 05:17:28 AM »

I am in a hospital room in Madison prepped and ready for surgery. Two kidneys from the same donor—one goes to another recipient, I get the second one when the first surgery is done. Might be another 3 or 4 for hours before I go in but as of now all is a go. Wish me luck! Will update when I can.

Debbie
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iolaire
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« Reply #1 on: September 12, 2019, 05:42:48 AM »

Best wishes for waking up tonight with a extra kidney.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
MooseMom
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« Reply #2 on: September 12, 2019, 07:28:32 AM »

Oh, wow!!!!!  I can't believe this day is finally here!  Oh, gosh, I am so excited!  For how long have we been anticipating this occasion?  I am so hoping that all goes perfectly and that your recovery will be "unremarkable", as the docs say.  Best of luck to you!  I look forward to hearing lots of good news from you in the near future.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
LorinnPKD
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« Reply #3 on: September 12, 2019, 09:55:49 AM »

Debbie, sending you all good wishes today! May it all go easy & steady!
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tigtink
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« Reply #4 on: September 12, 2019, 04:45:09 PM »

Surgery went great. New kidney putting out urine like gangbuster. Very little pain so far. No need for pain meds but that may change once I start getting up and moving around. Now I am going to try and get some much needed sleep before they come in again and bug me. Thanks for all the encouragement. IHD is a big source of support for me. I am filled with gratitude today. What a gift!
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iolaire
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« Reply #5 on: September 12, 2019, 05:18:26 PM »

Congratulations!  I’m amazed that people like you come out an comment same day as the surgery. I feel like I was groggy for days.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
MooseMom
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« Reply #6 on: September 12, 2019, 07:40:21 PM »

Oh, tigtink, this is just such marvelous news!  I am thrilled to bits for you!  Thank you so much for giving us an update so quickly!  I'm impressed.  Keep it up; more updates, please!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
tigtink
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« Reply #7 on: September 13, 2019, 03:02:46 AM »

Still doing well. Vitals good, urine output good, 6 hour labs good, minimal pain. I was still pretty loopy in recovery but nice and clear by the time I made it back to my room.

The call came at 6pm Wisconsin time on Wednesday. A dear friend drove me an hour and a half to Detroit in the rain to catch my flight, which was delayed an hour by thunderstorms. Made it to the hospital right before 1am and was admitted immediately. I sent my sister and her husband home because it was clear the surgery would not be for many hours.

I then had a shower from heaven and settled in to an anxious wait. Found out I would be the second surgery. My sister came back at about 10:30. They finally took me back about noon and hooked me up to that wonderful inflatable warming gown which finally brought my unusually high blood pressure down to normal again. I was taken into surgery right before 1pm and was back in my original room by 5:15.

I had a spurt of energy and visited with my sister and texted updates for a while before the lack of sleep finally caught up with me. After some fitful sleep I finally talked them into taking me off the oxygen and letting me use my CPAP even though pulmonary was a no show. Then I snatched some decent sleep in between their constant interruptions until about 11 pm when they got me out of bed the first time.

The medical assistants said I was one of the best first stand ups of any new kidney transplant patient they had ever seen. Very little pain, stood for 4 minutes, and  my  already low blood pressure they feared would drop actually went up a bit. The nurse was not happy that they did not make me actually walk the first time. I am waiting for my second rising which will include a walk any minute now. It is 5 AM and I am wide awake. I guess my record of quick recovery from anesthesia remains intact! Something about being a redhead they tell me.

That’s all for now. More when I can.
« Last Edit: September 13, 2019, 03:11:57 AM by tigtink » Logged
Kathymac2
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« Reply #8 on: September 13, 2019, 05:20:15 AM »

Congratulations tigtink!  I am so happy for you and especially happy that things are going so well.

Take good care of yourself and you will be out of the hospital and well on the road to recovery before you know it.

Kathy
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MooseMom
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« Reply #9 on: September 13, 2019, 06:51:12 AM »

I am so glad to hear you are recovering so well!  I'm especially glad because I was much the same, and I think it is important to let prospective tx patients know that recovery from a transplant operation does not have to be so terribly arduous. 

Thanks for the update, and I'm looking forward to more.  Congratulations!  I'm so pleased for you!.

And shoutout to the friend who took you to the airport!  Friends like that are rare!

Oh, and let me know who your tx coordinator will be.  I might know her!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
cassandra
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When all else fails run in circles, shout loudly

« Reply #10 on: September 13, 2019, 10:13:56 AM »

Truely fantastic news!!!
Congrats and enjoy 😇


Lots of love, Cas.  :cheer:
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
tigtink
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« Reply #11 on: September 13, 2019, 05:45:10 PM »

More updates: They are still not sure the new kidney has kicked in yet. Creatinine ticked up just a bit to 3.17 so they did an ultrasound today. Everything looks good. They should have just asked me. I could have told them the increase in creatinine was because they limited my water intake for fear of nausea. They were fooled by the large amount of urine output but that is normal for me. My two little native beans chug away nicely still if they are hydrated. Within three hours of increased fluid my hourly urine output doubled. I had three yummy popsicles today and three progressively longer walks down the hall, with one more walk before bed. And a blissful 2 hour nap. I was the energizer bunny all day— probably from the 50 mg prednisone—but I made the most of it.

My dear friends from the YMCA FaceTimed me today from Bob Evans during our regular Friday lunch time. It was so much fun! Then I finally crashed and had a good sleep. Met with my new coordinator, Dave “just call Dave” Haynes. He is wonderful, patient and thorough. I think we will work well together.

On prednisone, tacrolimus, and mycophenolate. Will be down to only tac and mycophenolate by the time I leave. Also a two anti infection meds,anti-fungal meds. My regular meds, and some supplements. The only nausea came immediately after swallowing that god-awful fungal mouthwash. The nausea went away after 15 minutes.

They are taking great care of me here. The whole staff is fabulous. Even the guy who cleans the rooms stopped and helped me with some things. My sister and family are great support. And I appreciate all the support and prayers from my IHD friends. After 5 years and almost 8 months to the day  it finally happened! Blessings to the dear donor and his or her family. I think of them often. Two of us have kidneys now thanks to their selflessness. It is a sacred process.

One more walk then I crash for the night. Labs in the morning will show more.

So far so good!
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MooseMom
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« Reply #12 on: September 13, 2019, 07:51:49 PM »

Good for you, tigtink.  Good for you!

Thanks so much for the update.  I'm glad you're getting such good care.   :2thumbsup;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
cassandra
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When all else fails run in circles, shout loudly

« Reply #13 on: September 14, 2019, 01:28:56 PM »

Sounds positive indee!!!  :clap;
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
tigtink
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« Reply #14 on: September 14, 2019, 01:58:15 PM »

Catheter and IV are out. I am now untethered. On solid food now. Creatinine came down some, potassium was lowest in three years. I had a full banana and chicken parmigiana for lunch! Signs of a UTI (no symptoms though) so Keflex for a few days. Hemoglobin tanked but they want to wait and see if the new kidney wakes up and fixes it without Procrit. Surgeon thinks it might take two weeks to fully awaken, expects creatinine to gradually lower. Should go home to sister’s house Monday, back to Lansing in about 3 weeks. Emptying my bladder now and farting, which earned me a high five from the nurse. And lots of walking. I will be off the steroids by the time I leave the hospital but I will miss the extra energy. All in all, great progress. I am beginning to feel a little guilty though because they are pampering me so much. What a team! I feel very blessed with all the support from everyone. Now onto dinner, then the bandage will be removed and I can enjoy a wonderful shower.
« Last Edit: September 14, 2019, 02:00:51 PM by tigtink » Logged
MooseMom
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« Reply #15 on: September 14, 2019, 02:08:10 PM »

It's SO much easier to get walking once you're "untethered".  That's great progress, so congrats!

I'm glad to see they're taking a somewhat conservative approach and aren't giving you Procrit for the time being.  Give that new kidney a chance!

I hope you have had the best shower EVER!   :2thumbsup;  There's nothing like a good wash to lift the spirits.

Again, congratulations!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
tigtink
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« Reply #16 on: September 14, 2019, 05:33:13 PM »

First bowel movement followed by a long blissful hot shower, clean gown, and good tooth-brushing. Ah, the simple joys of life!
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tigtink
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« Reply #17 on: September 16, 2019, 03:36:10 AM »

I am nestled at home at my sister’s house. Just woke up from my first full night’s sleep in a real bed. I was discharged yesterday within 72 hours of leaving the OR. Creatinine is coming down every day, potassium is lowest it has been in three years, hemoglobin holding steady for now, still on no pain meds.

There are lots of new meds to learn and some new habits to develop, but over time I will work all those into my daily routine. I go Mondays and Thursdays for labs at the lab up the road here, have one clinic visit on October 4, and if all goes well home to Lansing until I come back on October 24 for a second visit. Less often after that.

I know this is a one day at a time thing going forward and there will be challenges ahead. But I have a great team behind me and family and friends and my furry babies to help. I will treasure each day I am given and do my best to care for this wonderful gift with reverence and diligent self-care. I feel blessed beyond words!

Now to my first day of freedom and some quality time with my puppy buddy Teddy. A hummingbird came to visit yesterday after I got home. Off to a good start.
« Last Edit: September 16, 2019, 05:35:23 AM by tigtink » Logged
tigtink
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« Reply #18 on: September 16, 2019, 04:08:39 AM »

I just want to convey a special thanks to MooseMom and Cariad for all your encouragement and the information you gave me six years ago. I never would have considered listing at Madison until you guys encouraged me and help me understand it was feasible. It turned out to be one of the best decisions I have ever made for many many reasons. IHD helped change the whole course of the way I handled things, from that awful day more than six years ago when I had the fistula installed until today. You were a source of information, inspiration, and endless 24 hour a day support that made a real difference. Thank you all!
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tigtink
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« Reply #19 on: September 16, 2019, 12:37:57 PM »

Today’s labs look great. Creatinine down to 2.09 from 2.5 yesterday and 3.89 the day of the surgery. Potassium in down to 3.8 despite eating lots of potassium rich foods. Hemoglobin ticked up a bit from yesterday. Steady progress.
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iolaire
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« Reply #20 on: September 16, 2019, 01:31:57 PM »

Sounds good. You might end up potassium pills. I was on potassium, magnesium and sodium bicarbonate for a few months. But my kidney was slow to start.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
tigtink
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« Reply #21 on: September 16, 2019, 02:14:33 PM »

They are having some trouble getting the tac levels right. There is a shortage of the 12 hour dosage so they have me on the 24 hour extended release tablets. The level is bouncing between 4 and 14. They have kept the dosage the same for now until Thursday’s labs because everything got off track when they withheld it for a day. It will take time to get it right.
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iolaire
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« Reply #22 on: September 16, 2019, 07:34:57 PM »

Yes expect lots of tac changes for a while. I think it was about seven months to sort of settle down and at about 20 months it settled down to the current level it’s been since April. (I don’t know if this timeline is normal.)

I’ve always been on the once per day pills.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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