Well, I thought it would never happen, but last Tuesday, January 25, at 1 AM, I received a call that the Transplant Hospital had a kidney waiting for me.
The phone was on vibrate and I kept hearing it go off but I incorporated the sound into my dream! Finally my back up person called and said they have a kidney and “go call the hospital!” She and her husband had gotten dressed and ready to come over to my house and bang on my door. I think she was more excited than me!
I had a bag packed for three years sitting in my extra bedroom, and I don’t even think I went through it before I went to the hospital. I showered and they gave me till 3:30 am or so to get to the hospital. I think I drove in no traffic in Atlanta at 3:00 AM and I’m lucky that I didn’t get caught speeding.
It’s been a challenge since I’ve been home but I’m so very grateful to you have a functioning kidney. It started working right away and I didn’t need to be put on a chest catheter with hemodialysis. I am very grateful and I urge everyone here to hang in there and continue hoping.
I was told through the grapevine that I had another three years to wait while I did home PD, but miracles can happen. I wish I would have prepared my house better, so if you feel something’s coming on, you may wanna get ahead of it, I recommend you do so. It’s rather disabling after the surgery and you cannot bend, lift anything over 5 pounds or twist your body.
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TaffyTwoshoes27
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Congratulations! I am so very happy for you. Just great news. What meds are you taking? Do you feel pretty good? What a relief for you. What did you do today? Tell the story. ❤️
I'm on 20 medications. Some will drop off in about a month, but they have a very strict schedule. Walgreens at the transplant hospital gave me an organizer to put them in for each day of the week as well as four times a day. Alarms are going off on my phone all day. Right now, I'm trying to put my feet up and rest some, but it's difficult for me. I've lived on my own for several decades and I find it hard not to organize and straighten up, but I'm not allowed to pick up anything over 5 lb and no twisting or bending to pick stuff up off the floor.
I have edema in my feet, ankles and calves which is a bit bothersome. They gave me some lasix yesterday and they want me to take it for 7 days.
Today is the first day I've been alone. I have a 79-year-old church member friend who is carrying the load for driving -- which I cannot do for 6 to 8 weeks -- and getting me to my appointments at the transplant hospital, which is about 15 miles one way. She has also been doing some cooking for me, which I appreciate greatly. I never have been much of a cook and I think that eating pre-packaged foods was part of the problem with my blood pressure and my kidney damage to begin with.
It's a challenge to keep up with eating and they want me to drink 64 oz of water each day. That's a real killer when you're taking a diuretic. I can hardly get to the bathroom at times! They told me that your bladder muscles become weak because on dialysis, you are not holding as much urine and so the bladder needs time to readjust to the new amount of urine it's holding. Hurry up bladder!!
I have to go for now. I need to fix something for dinner. It's an odd sensation to have to be aware that I need MORE phosphorus. In fact, Monday when I saw the nephrologist and they took labs, the nephrologist put me on a phosphorus pill that ARDS phosphorus to my system. You're not restricted in potassium or anything but sodium, of course and sugary treats.
I'll continue to share, but right now, I need to get some things done. Thanks for your kind words.
It does get easier. I received my kidney 10-31-2020 after being on dialysis for 3&1/2 years. I was lucky I was only on the transplant list less then a month . I had to have the gastric sleeve to loose weight. I have several medical conditions including lupus which caused my kidney failure to begin with. I am still not up to the 64 ozs of water. 1 due to the limited amount your allowed on dialysis 2 because of the gastric sleeve reducing my stomach 80%. It does get easier. My meds I know I have about 15. I know them but still use the list as a in case . The swelling does go down. I still take a diuretic. My labs the last few visits have been good no need for med changes. I see my dr every 3 months . I have to drive to Knoxville Tennessee. About a hour and a half away. But that’s worth not being on dialysis anymore. The eating gets easier also. You just learn over time. I also have alarms set for meds . The bladder does get to where your not in the restroom ever 30 minutes to a hour I now am up to about every 3-4 hours I can wait . I wish you the best of luck. This group is amazing it has helped me if I ever have questions. My only issues I deal with now is lack of sleep due to one of the side effects of one of the transplant meds. Tacrolmus. It’s also causing hair loss . Dr Grandas said there is another medication that don’t cause these issues but it doesn’t work as well retaining the kidney. I prefer 3-4 hours of sleep and loosing hair to my kidney not working. I wish you the best of luck.
That was GREAT information! Thank you for taking the time to provide some feedback. So much needed. It gives me hope that I'm doing well. I saw my cardiologist today and a psychologist via Telehealth yesterday and both of them say that I look like I haven't even had surgery. It is a new sensation and lots of changes, but I am grateful not to be on dialysis as well. I was on dialysis since 2016 and on the wait list since 2015.
Where do you live now? Knoxville is not that far for me but I was told not to even register there and that there was a better chance in Atlanta because the radius that we now pick our organs from has been widened so that we get more opportunities for kidneys. But they really did have me thinking I was at least 3 years out from even anticipating a transplant. The woman that called from the hospital trying to get me to come in said that she had seen my name pass by a few times, which nobody told me and which surprised me greatly.
Thanks again for all the great information. It really is helpful to know that somebody's been through it, somebody has come out the other side and has very positive things to say about the whole experience. I met somebody waiting for a prescription at walgreens, an older woman, who said her husband wishes now he wouldn't have had the (kidney) transplant. It was very shocking. I asked her when he had it and she said 4 months ago. She was disabled so perhaps it hasn't been easy for him to get the assistance he needs.
You take care of yourself, keep on keeping on, and God bless you!
I am in Cleveland Tennessee. I wouldn’t change getting my kidney for anything. Only issue I ever had was about 3 weeks after my transplant my body tried to reject . I was in the hospital 2 weeks but they got it straightened out, I think it was my lupus. I have been fine since.
my creatine went up that’s how they knew other then that no symptoms. I guess that’s why they have us go so often at first. I go again in November and if my levels are still good I go yearly.. best of luck to you …
I still freak out every time I go for labs. Every-time, and I don’t stop till my creatine comes back. So honestly I don’t know if that feeling ever goes away. Just take ur meds like instructed and keep all drs appointments. My medication is finally fixed where it hasn’t changed in over a year .
It sounds vaguely familiar. It is interesting about the phosphorus. It does sound pretty normal. Too bad I don't live closer. Do you need anything that I can ups to you? Later on, a canvas wagon is really helpful. So happy for you. 🐈
God bless you! Your church friend is a good friend for helping you out. God gives his toughest battles to his best soldiers. I am glad to see this good news! I have seen some of your posts about the issues with your potential living donor and I’m glad it all worked out and I wish you the best of luck and best of health!
Wonderful news! I don't know if this is possible with your edema, but one thing that greatly helped with my recovery was walking. I walked outside every day, although for only short distances the first few days.
I hope to get to that walking stage soon. They tell you for the first couple of weeks at least to take it easy come arrest and not to overdo walking and standing and so forth. They really want you to rest, pump up the protein so that it heals the stitches and surgical stuff and they know that you're extremely busy with doctor's appointments and so forth when you come home. There is no way that I could be doing all this laundry and catching up with stuff and dishes and cooking and so forth without my friend. I'm glad to hear that it gets a little easier to do the exercise, but the edema is really bothersome at times. My feet literally look like loaves of bread and it isn't a very comfortable feeling. They have cut my diuretic in half because I was losing too much weight. I started the medication on Monday or Tuesday and lost 10 lb by Wednesday. They don't like that.Thanks for your input. You guys have been so great on here I just am overwhelmed. Thank you, thank you, thank you one and all!
Congratulations! It will get easier as you heal, and your med list should get shorter as you get further from dialysis. My church was real helpful with rides and food.
Congratulations!! It’s an awesome feeling when you actually receive the call and you go and get transplanted. I know for me which I have been transplanted a little over a year (January 2021) The recovery process was fairly minimal,! I didn’t have much pain and I was able to get around walking fairly well, but everybody continued journey is different. Just enjoy your BLESSING “THE GIFT OF LIFE” !!! 🙏
Happy for you. Keep us posted on anything and everything 'only' if you feel up to doing so. Rest and listen to your body and rest and keep feet elevated. Congratulations
Congratulations! I wonder why you always "GET THE CALL" in the wee hours of the morning? I got my call at 2:30 am and had to be at the transplant center by 5:30 am and then I didn't go to surgery till 3:30 that afternoonBest of luck with all of your meds. If you have any problems or issues, make sure you tell your transplant coordinator ASAP.
Wow! That's a long time. I'm hopeful and pray that this kidney does not fail on me and I wonder what the statistics are about that happening. They said it was a very good kidney and the surgery couldn't have been better. Although I don't try to be a negative person, it makes me wonder. Thanks again for your input!
Mine was a deceased donor as well. Allegedly, he was a 40-year-old man and I am 66-year-old female. Thanks for the input and thanks for uplifting my spirits!
The “CALL” is usually in the wee hours because they usually remove the kidneys from deceased donors at night, after the elective surgeries are done (the donors are kept on life support).
My husband got his call mid-afternoon. Thank goodness because if we got that call in the middle of the night, we would have slept through it! We actually received a text because neither one of us answered the phone. We're used to receiving scam calls throughout the day and our call came from a different state. So thankful for modern technology!
Yes, how in the heck do these creeps get my cellphone # in the first place? Are they paying a county employee for information under the table? That's illegal (like selling HIPAA info).
The antagonisation is undiscribale mate my first call I got to the hospital 100 miles away the phone rang they said you need to go back home the organs are no good I could have cried
I can sort of relate. My expectations were not that high since I was told by a couple of nephrologists and the transplant coordinator that I had for 6 years that sometimes you get to the hospital and they have four people for one kidney and they test everybody and see who's the closest match and the rest of the people go home. They do not help with stimulating your hopefulness that you are going to get a kidney (or they placate and you can see it in their face!).I was starting to lose hope that I might be 70 yrs old before I got the opportunity to get a kidney and it might be that I aged out. It isn't a fun ride and you have to have the determination of a rhinoceros to survive it, I believe.
So, have you been transplanted yet? I have so many responses to get through that I'm sorry that I'm not taking the time to investigate your profile. I have had an appointment every day since I was released on Saturday except for yesterday I had to Telehealth appointment.
It's difficult to drink 64 oz of water as well as keep shoving food down when you can't eat that much. But it's so necessary to do so I'm forcing myself. People that I meet, including doctors, say that I look very good and that I do not look like I just underwent major surgery. But there are times when I feel like I've had a major surgery!
Yes it’s a lottery getting one I am a beg rhu quite rare I had to lose six and a half stone I was I diabetic which is so hard to lose weight one thing I don’t like is when someone try’s to tell me I will never do it I spent 19 days in hospital after getting it done they let me go home for a weekend returning to hospital I was involved in quite a bad bar accident a woman crashed into the back of out car bearing in mind my stomach was stapled from top to bottom
Congratulations! So glad you got your kidney; my hubby was also on PD when got his transplant at age 71. We, too, were surprised when we got "the call'; not expecting to hear anything for at least another year or two. My husband had complications after the transplant but is now doing exceptionally well! I'm sure you will too!
I am thrilled for you! We are right there together! My gift of life was 12/24. My GRF was 5 prior to transplant but now around 50. Trilled I had my one month biopsy that came back great! I call my kidney “Bucky” because the donor was from the buckeye state of Ohio.
Just saw your message and delighted to read this. My prayers for you to have a very smooth transition and recovery and May this miracle remain with you forever🙏🌹🤞❣️
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