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Does everyone post transplant still require yearly CTs and MRIs?

DebTransplant Patient
January 25, 2024 in General

I’m due for my yearly Ct and MRI in a few weeks and I find myself getting more and more anxious about them. I just had a liver biopsy in June and although it wasn’t bad my nerves were shot!! Haha I was just curious if everyone’s doctors are this cautious. I’m due labs and a doctor visit the next day so it’s an over night trip. I’m almost at the 4 year post transplant mark!! Hope everyone is doing well.

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  • AliEm14Expert
    Transplant Patient

    I'm 3.5 years and I still get yearly MRI's/ultrasounds. From what I know from most people in my area I've heard this is fairly normal. I also get labs every month (more if something is off).

    So far nothing has come up, and it gives me peace of mind to know if something does happen they'll be able to catch it right away. That mindset shift from something must be wrong and that's why they are being so cautious to I'm so well looked after and cared for was huge for me. I still get anxiety every now and then but I also feel like I have a lot of tools to cope.

    January 25, 2024
  • MelsammTransplant Patient

    Hi Deb AliEm, I am 3 yrs. LTP and the only time I had a ultrasound done is when I went in acute reject a year ago, they were going to do a biopsy but I responded to the massive dose of steroids and of course they increased immunosuppressants. So I am grateful for that, I really did not want a biopsy I was scared they would upset my liver and cause problems “ my opinion on it” I do not have to have thus far annual MRI/US. I am dealing with a very low blood counts but they feel it’s from the celcept so they did decrease that some I am on monthly labs, which my last 2 labs my blood count was still very low but liver numbers were stable😊. I am still on high does of Prograf but they tell me since I had a rejection they are extremely cautious to lower it.

    Deb sending you the best that all is going to be nothing but good news. πŸ’šβ€οΈπŸ˜Š

    January 25, 2024

1 - 14 of 14 Other Answers

  • MelsammTransplant Patient

    πŸ‘πŸ‘

    January 25, 2024
  • KarinExpert
    Transplant Patient

    Hi,

    I think annual ultrasounds seem pretty innocent, are norm- but I am almost sure annual MRIs are not the norm in the U.S. due to cost.

    For kidneys, we are mostly monitored w labs, unless there is a symptom of pain etc from the graft area.

    January 27, 2024
  • DebTransplant Patient

    Thanks ladies!! They said part of the reason was where my liver had cancer lesion on it. They have taken me off of the Celcept completely and lowered my Prograf so I think I’m ok I just hate MRIs. I’m so claustrophobic any more. The liver biopsy was a piece of cake, fast painless and I have a fibroscan , much like an ultrasound, every other year. They are very costly as well.

    January 27, 2024
  • MelsammTransplant Patient

    Karin I agree with you on that.

    Deb I am so excited to hear your fantastic news. Yes it makes since that you will be followed a little more closely. Yay off celcept I hope that I am going to be off soon to. What did they decrease your Prograf to that’s going to be a big one for me. Life is good.

    πŸ₯³πŸŽ‰πŸŽŠπŸ’š

    January 27, 2024
  • DebTransplant Patient

    Melsamm I’m now taking 1 mg am and .5 at night. That’s it for now. I was at .5 morning and night before my rejection episode. I’m slowing getting there again.

    January 27, 2024
  • MelsammTransplant Patient

    O gosh I cannot wait to be where you are slowly I know. I just know I will feel so much better. The celcept makes me so tired, Prograf has affected my kidneys. Again I am so happy to hear your good news.

    January 27, 2024
  • DebTransplant Patient

    Melsamm my kidneys are taking a hit too. When I have my MRIs I have to sign a release form about the contrast they use and I know meds are hard on kidneys too. I try do everything I can to protect them. Hopefully you will get meds reduced as well. I will update where I am after my visits in February. We got this!! πŸ’šπŸ’š

    January 27, 2024
  • KarinExpert
    Transplant Patient

    Hi - prograf was what caused my first kidney to fail - that is why we need to push for more drug development in academia and industry! It is not ok to not have any new drugs for decades… prograf prevents rejection but causes severe side effects and so does MMF…

    January 28, 2024
  • fern22Transplant Patient
  • DebTransplant Patient

    karin

    I totally agree 100%!

    January 28, 2024
  • MelsammTransplant Patient

    Yes we do.. πŸ’šπŸ’™

    January 28, 2024
  • VegasrailsTransplant Patient

    I'm a month away from being 4 years post-transplant (kidney). I haven't had an ultrasound or MRI since my first year. I do have scheduled monthly labs urine and blood for monitoring. There's a rare occasional phantom pain from the transplant site but nothing to call alarm.

    February 3, 2024
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