March 2019 will be my second month on HD. I am a 75 yo/eGFR of 8 and creatinine of 6.78 when I started dialysis. In a few days (March 5th) i will have a cardiac cath/stint procedure. A week later I will have surgery on left kidney to remove/treat a 3.5 cm renal cell carcinoma. In mid-March I have my first appointment for listing on the transplant list. While in hospital in January, 2019 to begin dialysis I had all kinds of tests (echocardiogram, blood work, chest X-ray, and nuclear stress test). I am currently maintaining my dry weight of 79.5 kg and seem to be handling HD well except for a few abdominal cramping during dialysis. Does anyone have experience with what concerns I might/should have about getting listed on the transplant list? What does it mean to be in “good “ health in order to get listed? Are there things I could do to prepare for the transplant evaluation? When will I know if they approve me to be listed? Does anyone have any thoughts or suggestions? Thanks!!
Transplant evaluation appointment - Kidney Dialysis
Transplant evaluation appointment
Hi im Dave was on dialyses for 7 years 3 onPD and 4 on HD. When I was on PD I had a abdominal cathidor and when I was on HD I had a chest cathidor when on PD I used to get bad crams while doing my dialyses turns out I had an infection in my abdomin was hospitalized for 8 days the pain was like nothing I’ve ever exspearance before.they tried several antibiotics nothing worked finally the figured out the infection was in the cathidor so they did sergery took my line out and put a chest cathidor I thats when I HD the abdominal was pretty well gone and my chest line was working fine it lasted me 4 years that’s how long it took to make the list 2 months later on 05/24/2018 I got the call 🙏 I’m am now allmost 10 months post transplant and I’m doing great my labs have been very good just a few med adjustments along the way🙏 I’m eating healthy I’m exercising and my main priority is staying healthy it was like Was like the last eight years were a bad dream 🙏🙏😝
Thanks, Dave! My name is Michael and your comments are really very helpful/supportive! Right now i am not feeling very positive. It’s even difficult for me to keep things in perspective. Wednesday, March 13th I am having left kidney surgery to remove a renal cell carcinoma. After the cardiac cath last Tuesday they now need to schedule a “triple” bypass. (Ughh)! On the morning of March 19th I am scheduled to see the heart surgeon to schedule and on the same day (in the afternoon) I am being interviewed by the kidney transplant team. The HD, while painless, actually tires me out and it takes me almost the entire next day to recover. My nephrologist started me on sevelamer and now one of the side effects is joint pain; my feet are in pain! Well, enough complaining for now! Tomorrow is Sunday (and our clocks SPRING AHEAD one hour—-more sunlight) and no HD! My hope for the next month or so is for successful kidney surgery, good veins in my legs for bypass surgery and placement on the TRANSPLANT LIST! My priest administered “last rites” (anointing of the sick) last week which did sincerely lift my hopes that things will work out! Thanks for your comments and so happy “you got the call”!
Hey Micheal I had a very rough 7 years many complications I’ve been type1 diabetic for 36 years I thought for sure in the last coupel of years I wasn’t going to make🙏 But the sicker I got the mader I became I did everything in my power along with my nurses to get on the friggen transplant I’m talking countless doctors appointments and multiple procedures I had Hep C that took me 21/2 years to be cured plus my diabeties I lost count of the many different specialties dialyses was keeping me alive I was so busy dialyses 3 days a week four 4 hours and on my days off I had some type of appointment I was on the go 7 days a week for at least 2 years to top it all of my sister my main support system passed away 🙏about a year before I finally made the LIST so I finally made the list just in time 2 months later I GOT THE CALL on 05/23/2018 my sisters birthday🙏It’s allmost been10 months posttransplant the moral of my story is NEVER give up no matter how hard it gets I’m living proof that things can and will get better reach inside your self and find the strienght💪That will keep you going until you make the friggen list💪💪🙏if you have ANY questions at all please don’t hesitate I am now a mentor for people on dialyses as I say been there done that😝Dave
Wow! Your words and thoughts are so powerful to me! Thanks for the positive attitude! I will definitely keep trying! (Sorry about the passing of your sister). Even though I do not know you I will add you and your sister to my prayer list!
Thanks Micheal the whole situation with CKD has definitely changed the way I look at life 🙏🙏🙏 when I pray I ask god to give everyone with CKD the strienght to stay healthy and help doctors find a cure 🙏🙏😝
Just rereading your messages! Thanks for being so positive!
Hi well what I endured over the last 8 years dialyses death in my family,while fighting for my own life has definitly changed my perspective on life,imthe last remaing member of my immediate family 🙏I believe that god,or a higher power than myself wasn’t finished with me because I SURVIVED i am still here to help others,in what ever struggles they are facing,that’s why I became a mentor for dialyses patients and I’m just getting started🙏🙏😝
Hi Gotthecall
Good to hear that you are doing well
I am not yet on dialysis but called the hospital to put me on the list for transplant evaluation. The answer I got was do you have live donor which I don’t
So they refused to put me on the list. I am 75 yo.
I would appreciate if you could share your road block experiences and put me in the right direction
God bless
Sam
Sam, have you tried another transplant center? Also, where is your eGFR at this point? If it’s high enough that could be a factor in the first transplant centers reaction I suppose. However, id definitely ask the first center to explain their response to you.
Jayhawker
Hi Jaywalker
No I have not tried another transplant center
My GFR IS 18, creatinine 3.18
Good idea, I will ask for explanation.
I have 3 doctor nephews. May be they can help me seek the right transplant center
Thanks again
SAM
I’ll be 67 this summer. I’ve been deemed eligible for a transplant. But I do feel time ticking away as I wait this out—will I still be healthy enough when the deceased donor kidney arrives or will time run out first.
Qualifying gives me some hope. I’m certainly going to do everything I can to remain eligible as I wait. But there certainly are no guarantees. I just keep telling myself that God’s got this. It will be okey whether I ultimately receive a deceased donor kidney or not.
Like you I’m not yet on dialysis. I’ve been in renal failure for slightly more than 3 years at this point. I’m still working full time at a job that I love. And I’m thrilled that my eligibility testing data came in as good as it did; frankly, I was more than pleasantly surprised.
I wish you well.
Jayhawker
Hi im Dave sorry to hear that can i ask where you libe what hospital? Just because you dont have donor doesn't mean you cant be put on list once i know more about you situation i can better answer your questions let me ask you do you have messenger? Or face book? Its much easier for me to keep in touch with you ok i will keep checking here but don come here much any more. Im sure we can find someting hang in there 💪🙏😝
Hi Dave
Thanks for the reply and encouragement
Unfortunately I do not have a Facebook account, and I am trying to create one but running into some difficulty
I am waiting for my son to help me get onto FB. Kids are always busy and no time
Looking forward to hear from you
God bless
SAM
Hi again ok that's not. a problem when you get it figure out let me,know,ive read a few responses to your posts i agree with second, third neurologist i habe a lot more to say on this subject😂 Once you get Facebook we can become friends and I also recently opened the support group called Kidney advocate 2019 I’ll tell you all about it for now I guy said we can communicate here but it will be much easier once you get on Facebook we have many more options if you have anymore questions about this right now please ask we need to talk OK
Hi Sam tried that address again bad address?
I'll be going through transplant eligibility testing soon. (I'm waiting out an appointment with a new nephrologist right now. That appointment isn't until May 30th. I've been in renal failure for 2 1/2 years now but am still not on dialysis; although, it's clear that I'll likely be placed on dialysis soon.) anyway, as soon as I get to my next appointment on May 30th, I'll request to be referred for transplant eligibility testing. That's if I font refer myself in for testing before the appointment...
All our situations are so different. But what we each seem to share in common is the need to dogmatically keep advocating for ourselves and do our best to take care of ourselves.
CKD is certainly challenging. But I'm convinced that attitude is at least half the battle. I'm finding many of the nurses I work with to be incredible resources! I often leave conversations with these nurses with increased knowledge, understanding, and encouraged.
Anyway, please update us as you move through all of these treatments and surgeries this month.
Marj
Thanks for everything! I appreciate your comments! I am looking forward to Wednesday for the RCC removal!
Good luck in May Jayhawk🙏🙏
Thanks, Dave🐶 I know it's pretty hard to qualify so am really expecting I may not qualify. But I'm going to give this my best effort. After all, I may well be surprised and be one of the lucky ones who beats the odds to qualify🐶
Like you, I'm the last person living in my family. I have never married nor had children. I do have several close, supportive friends. I'm very thankful for them.
I'm turning 66 in August. So I realize this may very well be my only real shot to qualify for a transplant. So I'm keeping my fingers crossed and hoping for the best. I know this is in God's hands; I'm at peace with the outcomes either way.
Matj
Hey jay seems like we have a lot in common😝how long have you been on dialyses. Sorry if my memory fails me if I’ve all ready asked🤗
Ok sorry jay looked over the conversation not on yet🙏Just do your best and if you don’t ask what you have to do to get on.? 🙏😝
Just got my renal panel from last week. My creatinine was 3.07 and eGFR was 15. All electrolytes still in the normal range. I'm on a low potassium diet. I've got severe anemia. I take Auryxia, sodium bicarbonate, vitamin D and B12. I'm not on diuretics or blood pressure medication. My cardiovascular tests last October came out in decent shape. No heart disease at this point. My liver is still okey. I've never had cancer. I am a type II diabetic but my A1C is always in chech (5.3-5.4) without medication. So the nephrologists who have strongly suggested that I get in for testing may well be right; I may be surprised and find that I do qualify.
But I've become so weak over the last 5 years. So I'm working daily to regain strength and so forth. My goal is to be walking 2 miles a day as well as either ride my bike for 5 miles a day or do a moderate 30 minute workout on my elliptical machine daily by May 30th when I see my new nephrologist. I'm about halfway there at this point🐶 The closer I get to meeting this goal, the better I feel. So even if I don't qualify for a transplant this is still time well spent.
Anyway, I'm committed to getting through the testing to see where I stand on all of this. Then, if it's something I can address that disqualifies me, I'll certainly work to address the situation. And, again, I may be very surprised to find that I qualify right now.
Marj
Well that sounds pretty good especially the walking and exercising,have you don’t your nuclear stress test. That’s where the walking will come in handy.keep it up man your doing all the wright things🙏😝
No, the stress test was the only test the cardiologist didn't do last October. But if I can meet my goal I think I may be ready for that test in June. Right now this exercising stuff is definitely still a struggle. But I'm sticking with it and slogging through both activities daily; even on days when I'm really not feeling very well.
Marj
Well jay don’t over do it ,listen to your body and keep up the good work💪😝
Michael,
Just want you to know you are in my thoughts and prayers.
Marj
I was referred for kidney transplant evaluation in October 2018. Finally had appointment on March 7. Today I have my final tests - Echo & Nuclear stress test. I have said I never wanted a live donor, but the Transplant Center spent time convincing me I was worth it. In the one day I spent with the testing, interviews & examinations I learned more about my body, my disease & my current health. I have applied those things to my eating & life habits. My GFR went up by 2 points, so if I don't make the list the process had positive impact on my journey.
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