I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Sax-O-Trix on February 08, 2011, 02:31:08 PM
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I am scared silly. My brother has been approved to be my donor :clap; I realize that it's not a done deal until it's over, so I will not get too excited until I am on the other side of the transplant. I need to find a good check list of things to take care of before and after the surgery... If you can think of things I need to take care, please post your suggestions. I AM ALL EARS!
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congrats on the transplant date. one thing I would do is think about how are you doing to pay your bills while you are in the hospital? I always like to pay things ahead of time when a surgery is coming up so I don't have to worry about it when recovering...
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HOw very exciiting! :clap; and how wonderful of your brother to do this for you. It is a wonderful thing and i will love to follow your journey through it all. It's been so enspiring to hear of all these that have happened over these last months and i would hope that it gives you great confidence that thiss will be good for you too. Im very happy to hear of your 'turn" :flower;
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Congrats as mentioned, paying bills is an important one. If you are not paying them online yet, look into it so you can scheadule a onetime automatic payment. By some food that you may want that you can't have now. Just buy a smal amount just incase the kidney takes a little time to wake up.
Then there is the usual clean house, teach kids to be vigilant to clean hands
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congrats on your tx date,hope it all goes well
keep us in the loop
:thumbup; :yahoo; :2thumbsup; :clap;
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I am very excited for you. :yahoo; A couple of things I wish I had with me -- chapstick, it is so dry in the hospital and my lips were very sore. Also, some kind of hard candy to suck on -- although I was drinking nonstop, my mouth was always dry. I had no time to prepare, so I just went with the basics. Take your own pillow! I stayed in the hospital gowns. You will have a drain in the incision and sometimes it leaks and stains what every you're wearing. I didn't want to ruin cute pajamas!! LOL I never read or watched tv while there. You are very busy with meds, walking, doctors rounds. And then you just want to sleep the rest of the time! (of course, they wake you every couple of hours!) It all went by very fast - and suddenly I was home. Good luck. It really is exciting.
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For the first nights at home you may want an incline pillow or a bunch of pillows so you don't have to lay flat and it makes it a bit easier to get out of bed. (since you no longer have the hospital bed to help you get up a bit)
A small broom with a long handle dustpan is handy to have , i was able to move around and sweep a bit, but I could not bend down with a dustpan.
You may want to have a few Thank You cards to send out , for any gifts you may get.
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Have some food in the freezer that you can just pop in the oven and fix or have someone lined up to help with cooking. Someone to help with cleaning and laundry is helpful too. I agree you won't be able to bend over and pick up anything off the floor. I was restricted to lifting 10 pounds. You will be drinking lots of fluids. Water is great but when you have to drink so much of it, it's nice to have other clean liquids handy - no caffeine and no carbonation (that was my doctors rules).
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No carbonation? Huh. they got Carl drinking Sprite as soon as possible!
It is different everywhere.
Wipe down the drawer pulls, phones, remote, handles on the fridge, etc, with diluted bleach water.
And give your brother a GREAT BIG HUG! :cuddle;
Aleta
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Have some food in the freezer that you can just pop in the oven and fix or have someone lined up to help with cooking. Someone to help with cleaning and laundry is helpful too. I agree you won't be able to bend over and pick up anything off the floor. I was restricted to lifting 10 pounds. You will be drinking lots of fluids. Water is great but when you have to drink so much of it, it's nice to have other clean liquids handy - no caffeine and no carbonation (that was my doctors rules).
Yes, Prepared dinners is a great idea.. we were fortunate my Dear Niece called my friends and we had dinners cooked and brought to us for 3 weeks!!!
It was especially helpful since my DH donated his kidney on the same day I got mine (chain donation) so we were both laid up...
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I'm allowed to have carbonated drinks. It just doesn't count towards my 3+ liters of clear fluids I am supposed to drink each day to keep from being dehydrated.
Doctor said the new kidney is not attached to your brain, so the "dumb kidney" doesn't know when to slow down. It works constantly. If you don't drink enough, you will get dehydrated. I actually have to drink 4+ liters a day or the doctors threaten to give me IV fluids.
Dumb kidney - one of the funniest things when I was in the hospital. My sister donated her kidney to me. When the doctor said I had a dumb kidney my sister's comment was "Well, it was smart when I had it!" :rofl;
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saxy it is almost time!!!! so happy for you! good luck!
Dumb kidney - one of the funniest things when I was in the hospital. My sister donated her kidney to me. When the doctor said I had a dumb kidney my sister's comment was "Well, it was smart when I had it!" :rofl;
I love this witty banter between siblings! It warms my heart!! :rofl; :clap; thanks for sharing!
xo,
R
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I feel like I am either on my way to the guillotine or the lion's den... PRAT testing yesterday was exhausting.
Eleven viles of blood, two chest x-rays, BP/weight check, six different "physicals" and an EKG later, I guess I passed. The neph told me I was the most straight forward case they have seen. Being preemptive, I don't yet have any of the complications that come with Stage 5 ESRD except for fatigue and even that isn't that bad. I am counting my blessings. My donor goes tomorrow for his final testing and our final crossmatching.
I hope I can do this... I wish more than anything there was a "cure" for ESRD, but know I should be thankful that we have relatively effective treatment options. It could be worse, it really could - I need to keep telling myself that.
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It's so much to do at the end, and it's stressful. But you're moving forward and that's the best news!
How has your brother felt about the care and information he has gotten from the Living Donor coordinator? I ask because so many centers are great but some do not communicate well and leave the donor feeling used or abandoned. I hope if he has any questions he'll check out Living Donors Online - there's a message forum like this one too, with support from people who have already donated. www.livingdonorsonline.org - there's also a check list of what to bring to the hospital.
Do you have someone to help you after the surgery? The biggest thing is that you cannot drive, and the clinic visits in the first 3 weeks are one of the biggest challenges, in my opinion.
Wow - it's coming up soon! :yahoo;
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:yahoo; :yahoo;
I am so nervous for you. It is like a test run for me as I'm doing this soon as well.
Good luck and I really hope all goes exceptionally well. :bandance;
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Well, here I am getting ready to leave for the hospital for the scheduled transplant in about 10 mins. I am not ready for this in so many ways and am having a hard time wrapping my head around the whole thing. I can't really think right now, lol.
Wish me luck! I'll be back to IHD as soon as I get a chance. Thank you all for sharing your CKD/Transplant experiences, you have helped me deal with this more than any other source :thx;
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will be thinking of you Sax... !! :pray;
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:guitar: :grouphug;
Looking forward to hearing that all is well and you are thriving with your new kidney!
:2thumbsup;
Aleta
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Wishing the best for you and your donor.
May all go smoothly for you both.......
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You & your family are in my thoughts & prayers today! I hope all goes well for you!!!!!
:cheer: :cheer: :grouphug; :grouphug;
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wonderful news...... we have so many who are getting live donors transplant.....good luck to you and keep us posted...
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wonderful news...... we have so many who are getting live donors transplant.....good luck to you and keep us posted...
Maybe our turn will come soon! You never know, I guess. Oh, wouldn't it be wonderful to have just the chance to have a normal life again?
SOT, I am so glad you've had this miracle come into your life. I know everything will go smoothly and you will be up and around soon, back to your old self. I can't wait to hear how you will live your new life.
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Hey Sax,
I hope all went well and you'll be back soon to give us the news - best wishes for a successful transplant. :cuddle;
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Any news yet????
How did it go?? :flower;
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Should be all over but the shouting by now. Hope everything went well for you and you are passing lots of liquid gold.
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Hi all,
Here I am on the "other side" 2.5 days later. I feel pretty good all things considered. The after-surgery pain was less than my first c-section, but about the same amount of pain of the second c-section even though the incision is 4 or 5 times longer. I counted at least 30 staples earlier today while waiting for an ultra-sound.
My donor (brother) went home today!!! 2.5 days in the hospital. The kidney was removed laparoscopically and he was ready to go home. I hope to go home on Saturday or Sunday. Gotta run - Dr. is coming. I will give a better update when I get a chance.
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Great news, Sax! :yahoo; :2thumbsup; :cheer:
w00t!
:clap; :clap; :clap;
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Great news! :2thumbsup; :yahoo; :clap;
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:thumbup; :thumbup; :thumbup; :thumbup; :thumbup; :thumbup;
very happy to hear this Sax0Trix, and to hear that your wonderful donor-brother is well and home. Soon the weekend will be over, and at some time, (maybe when they predict, maybe sooner maybe later...) they will let you home... Keep on healin, and counting those stitches, you should be proud of each one.
:thumbup; :thumbup; :thumbup; :thumbup; :thumbup; :thumbup; :thumbup;
:bandance; :bandance; :bandance; :bandance;
keep us informed. Big hugs to you and your kidney collection (do you have three now?) :grouphug; :grouphug;
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Wonderful news! Can't wait for more updates. :cheer:
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7 days post-op... I just knew that a preemptive transplant couldn't be w/o difficulties. The actual surgery went well, post-op went pretty well, but then I had a severe reaction (life threatening) to the Tacro. Basically, my red blood cells were under attack and my hemo levels went real low. I had to have an emergency chest cath placed (that sucked), two Plasmapheresis treatments (perhaps only one more to go), two blood transfusions and until this morning, the threat of a biopsy because my Creatinine was 2.0 yesterday.
The labs are better today (hemo up, Creatinine down to 1.7). We are still looking at another Plasmapheresis treatment or two over the next few days, but I may be able to go home today or tomorrow (more likely tomorrow.) No immediate biopsy, but you all know how that goes.
One day at a time for a while here.
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Sorry you are having such difficulties Sax.... but glad things are improving! I will keep sending good thoughts your way!!!!
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Sax thinking of you and sending positive vibes you way!! Keep soildering on pal!!
Thanks for the update!!!
xo,
R
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Transplants can be so rough at the start, but Sax, you never know: If you can get through all this hideousness in the begining ... sounds like its been hell.... then you may be up for many long peaceful years later. Hoping for you and sending good vibes too.
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Hope you are doing better. Please hang in there. I had my transplant on the 28th of March and everything is going well. I did not get stitches or staples but just the glue. Welcome to the club.
Larry
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What a wild ride it has been thus far... I am exactly five weeks out and am finally figuring out some of what happened two days post-transplant. The official diagnosis of my blood disorder was Thrombotic Microangiopathy/TMA; Thrombotic Thrombocytopenic Purpura - Hemolytic Uremic Syndrome or TTP/HUS. I ended up with the TMA because of Tacrolimus/Prograf, so I wanted to let you all know that this is a possible complication of immunosuppressent therapy. It can also happen for other reasons (listed below), most commonly during pregnancy. I was lucky that my immediate post-transplant team caught this when they did, even though I didn't feel so lucky at the time having the emergency chest cath placed, plasmapheresis treatments, blood transfusion, extra days in the hospital, extra blood draws and enduring the absolute terror I felt the entire time this was hanging over my head. I am counting my blessings as I am still here to talk about the experience.
For those of you who are interested in medical stuff, I have included a description of TTP/HUS from the Nephrologychannel.com website:
Overview of HUS and TTPHemolytic-uremic syndrome (HUS) and thrombotic thrombocytopenic purpura (TTP) are microangiopathic disorders—that is, they are characterized by abnormalities (chiefly blood clots) that occur within the small blood vessels of the body. Both HUS and TTP are distinguished by blood clots within the capillaries and arterioles of many organs. Such clotting is associated with hemolytic anemia (low red blood cell count due to cell rupture) and low numbers of platelets (cell-like bodies responsible for blood coagulation).
Hemolytic anemia results from the fragmentation of the red blood cells when they pass through areas of thrombi (masses or clots) or turbulence in the circulation. Such forces shear the cells in half, producing cell remnants that appear as helmets and other odd shapes when viewed under a microscope. In fact, the diagnosis of HUS-TTP is aided by microscopic examination of the blood for sheared red blood cells.
Causes and Risk Factors for HUS and TTPAlthough the exact cause(s) of HUS and TTP are unknown, experts believe that an abnormal, inflammatory reaction within the blood stimulates the deposition of platelet-rich thrombi. It has been observed that a circulating and/or missing factor in the blood perpetuates the process. Therefore, HUS/TTP patients often benefit from treatment that removes the plasma (fluid, non-cellular part of the blood) and replaces it with donor plasma.
Many diseases and conditions have been found to spur the development of HUS and TTP, including:
Enterohemorrhagic Escherichia coli (EHEC) infection. EHEC is a diarrhea-producing bacterium that has been associated with epidemic outbreaks of HUS in children. This particular bacterium (OH157:H7) has been identified in undercooked meat as well as other foods.
Pneumococcal pneumonia infection
AIDS (acquired immunodeficiency syndrome)
Drugs, for example, oral contraceptives, chemotherapeutic medications (mitomycin C, bleomycin, cisplatinum), immunosuppressive agents used during organ transplantation (cyclosporin, tacrolimus), stroke-preventing drugs (ticlopidine hydrochloride), quinine
Antiphospholipid antibody syndrome
Pregnancy and the postpartum period
Signs and Symptoms of HUS and TTP
The general symptoms associated of HUS-TTP are quite variable. Purpura (bleeding into the tissues) sometimes can be seen in the skin, and patients often complain of tiredness due to anemia. Some individuals with TTP may have neurological symptoms and fever.
HUS and TTP DiagnosisHUS and TTP usually are diagnosed by the combination of low platelets and anemia caused by hemolysis. Other findings may include fever, renal failure, and neurologic abnormalities.
Treatment for HUS and TTPIt is essential to treat HUS and TTP, as the mortality rate without treatment is close to 90%.
Treatment involves:
Plasma exchange with fresh plasma—Plasma should be replaced on a daily basis until the platelet count normalizes—typically after 5 to 15 treatments.
Plasma exchange with cryosupernatant of plasma—Individuals who are resistant to plasmapheresis (plasma removal and transfusion) with fresh plasma may need this more intense, twice daily regimen with plasma cryosupernatant (plasma derivative).
Additional medication with vincristine and intravenous gammaglobulins
Relapses are not that uncommon in people who have had HUS or TTP. Such cases may require another course of treatment. One study reported a relapse risk of 36% over a 10-year period. Therefore, patients need to be followed-up indefinitely.
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Goodness Sax-o-Trix. It seems as if, from this description, that they can get it under control, since they talk about relapses. Are you alright now?