Hi there
I have had all my tests completed to go back on the transplant list. I am approaching the 28 year anniversary of my existing transplant and have stage 5 failure with a GFR of 12.
Today I had my stress test and couldn’t do it. I only managed 3 minutes. I am so upset. But my legs just cannot move quickly anymore.
Has this happened to anyone else and have their team come up with another solution? I was told I would need to work on conditioning my legs and try again in 6 months.
Cheers
Xx
Cant they use an injection instead? They said I could if I wanted as I suffer from dizziness. I went ahead and did it without, and passed, but hated every second of it as im not much of a runner.
Hi,
They haven’t offered me that option. I am back with the nephrologist in a couple of weeks and will ask them.
Thank you x
Try making an appointment with a heart specialist and see if he can prescribe a chemical stress test. That is the only ones I have had since I am older. You may have to wait if the medical center is booked. Maybe why they are pushing a manual one. The chemical one entails more expensive equipment and staff.
hi there, I am with a kidney transplant of 29 years. They are having me do the tests to get listed now. I had the stress test and they gave me an injection that simulated what the exercise would do to the heart. It was a weird feeling, like a great weight on my rib cage and I could feel my heart pounding, then it subsided. It was not painful. Perhaps they can do this for you as well.
Good luck with everything!
The renal specialist nurse called me today and said they are going to look at another option so maybe this is it. Thanks a million and best of luck you. We have been very lucky with our existing transplants haven’t we. How is your gfr?
I am so very grateful for the many years with my transplant. My Mom gave it to me all those years ago. My creatinine is at 1.9 right now, but last year they had added a different blood pressure medicine in addition to the one I have been taking for so many years. It caused some kidney damage and I was admitted. The numbers were high enough to get on the list as inactive for now. I am thankful that the number has come down since then, but am still finishing the testing to get on the list. My mother is still alive and I am so very grateful to her. She was the age I am now when she gave her gift to me and I have a much better understanding now how hard it must have been for her at the time. I owe her so much!
Congratulations, DoylerOz, on having had your transplant for 28 years!!! What an accomplishment! I was experiencing considerable weakness prior to and when beginning dialysis. My solution was to dance. A song is about 3 1/2 minutes long. I would aim to dance, however slowly, in my kitchen for one song and as I progressed, I added another song on and another. It is also a mood booster! It worked well and helped me build enough to get back to walking my dog and do some treadmill walking. You CAN do the the stress test. Believe in you! Make a plan to overcome your weakness. This is really important. The transplant team looks at the test as an important piece of data. I observed that the anesthesiologists do, too. Any effort you make will be compared with the test you just took, so I imagine any improvement will help. You want to avoid being considered "fragile". The study of fragility in ESRD patients is pointing to the possible success or failure of candidates for transplant. Based on what I have read (studies are easy to find online), you want to show that you are not fragile. I wish you all the best!😊
Yes, one wants to be aware of being considered "fragile" by a transplant center. One might be able to substitute tests, etc., but one's personal presentation matters too. When we went to our orientation at the center, a transplant doctor watched my hubby walking the corridor, etc., he was clearly looking at pace, stride, distance, etc. Compliments to you on bringing back your strength and stamina.
Darlenia, thank you. You raise good points. We are watched closely!
I love this idea! And I love your explanation. I have been so upset since yesterday. But I am feeling more positive now and ready to get going again. I had been walking around the kitchen when I was cooking , doing laps of the island and the kitchen table. But I am going to start dancing now. I love that idea! Thank you xxx
Yay!!! I am glad my advice resonated with you! Stay strong and keep dancing! 💃🎼
I had many stress tests while evaluating for the waitlist and redoing the wait list tests every two years until I got my transplant 7 years after starting dialysis. I went to the hospital to have my stress test and they never made me get on a treadmill or bike or anything. They gave me a shot and a nurse and doctor and somebody else just came in there and watched me with the stethoscope on my chest to see if the stress of the medication they injected cause my heart to beat too quickly, as well as a blood pressure pump on my arm that intermittently checked blood pressure. Can you ask your nephrologist or the transplant hospital if you could be given the stress test in this manner? Being on dialysis, I have recently learned, and possibly even being transplanted for many years on a lot of anti-rejection meds is not as friendly to your heart as a healthy person. I would just inquire whether it can be done another way. Good luck to you.
I am definitely going to enquire about this. I have proximal myopathy and long and short fibre neuropathy. So my movement is just very slow. I will get there but not very quickly. It causes a panic sensation then which I am sure will do the heart recording no favours. I am so happy you got your transplant. Dialysis can be difficult. My first time on it was hard. But I think I am physically better for it this time.
Sending lots of love x
Thank you and good luck on your inquiry about the medication stress test.I didn't have any heart issues when I first started evaluating for the wait list in 2015 (60 yrs old). Perhaps they just went a little easier on me [I actually looked very healthy. Many medical professionals and long-time friends didn't even know I was ill (I lost 60 lbs. in 2012 and knew I was sick somehow. I was vomiting every morning). I think they had me on the treadmill one time through all of those wait list reevaluations, etc and it was at the beginning of the process in 2015. I was never asked to do the treadmill again.
My problem with the reevaluations was the breath tests (in the phone booth-looking thing where you have to blow out as much as you cam so that they can test your lung capacity.) I passed that test 2 or 3 times, and towards the end, they stopped testing me at all on that feature (and I was in my early 60's!).
My blood pressure was doing well on medication, so that may have allowed them to give me the shot for the stress test??
I was on PD (peritoneal dialysis) for 7 years; 7 days a week; 10 hours a day at night while sleeping.
However, I have been told by patients and my nephrologists that hemodialysis puts more of a strain to the heart than PD.
I hope you get that stress test under your belt and back on the Waitlist!! 🤞✌️
BTW: I did Home PD. I don’t believe it is as hard on the heart (over time) as Hemo is.
We had a very cool dude in our Transplant Hospital Vitual Support Group. He got transplanted at Jacksonville Mayo Clinic (they probably do more transplants than any facility in the SE)! I was thinking of getting evaluated there (I graduated HS in Jax). He had family nearby where he stayed. He was so positive! He even called me at home when I asked and talked to me privately about what he does daily post-transplant. He would say “Don’t Give Up!” We called him our “Ambassador “.
About 6 months ago, it was announced at our virtual meeting that he died as a result of a heart attack. He was in his late 50’s / early 60’s. He had been transplanted for only about 2.5 yrs. He told me he walked every day. We were all stunned. I still think of him to this day.
sending prayers you can get on the list. I did the injection type when I was first Evaluated . I probably could have did the regular but they didn’t waNt me to but no way I could do it now. Seem like I’m always having test for the transplant center I think differnt transplant
My center require differnt things I know I need an heart echo every year. I have to meet with them once a year. And I will need a heart cath but my nephrologist has talk them into waiting on that but my brother said he tested at the beginning and never had other test but he is in a different state .but he has been blessed to have a transplant.
I hope you get called soon. I was lucky with my first transplant 28 years ago. I went on an emergency list so was only on the list 2 months. I did dialysis for a year. I am ready for a much longer wait this time. I will be keeping things crossed for you that you get that call soon xxx
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