G'Morning All.  I am due next month for my Yearly Clinic and am curious as to the protocol of other transplant programs - which tests your receive, ect.  Also, as you are further out in your transplants do your tests change?

I am at a loss for words to explain what I am trying to find out.  I have decided that this year will be my last year for the heart nuclear test.  I have not been able to have a heart cath for nearly five years now because of clotting problems. My heart is in perfect condition and my cardiologist and I both feel that because of my advanced age this test is unnecessary unless I develop symptoms that indicate there is a problem. He manages my clotting meds and I see him several times a year. Also, I have Osteoporosis and Osteoarthritis in the first four vertebrae in my neck so the treadmill is out as well.

Like I said I am curious as to how other programs handle these yearly exams. I have clinic twice a year - a six month clinic and then the yearly exam and monthly blood work for my prograf and creatine levels. I see my transplant surgeon or one of the other doctors at these clinics.

My reasoning for this decision is that now that I am "elderly" it is time to let up on some of these expensive tests and just be allowed to age naturally.

Thanks in advance for any thoughts and comments and I hope that I have not thoroughly confused everyone.

 

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  • Glen I think ya missed Yvonne point ? Plus  not all can do Allomap- I am 15 1/2 years post and only have blood work and chest exrays and ekg's.Did have he Nuclear stress test this year.

  • my first year, was biopsy every month, then every 2 months, until my first  anniversary, then twice a year.

    2nd and third year, had a stress echo, and treadmill.   after 4 years, no more biopsy's, just an alomap,

    and stress echo/ treadmill every six months, and of course blood levels.  once you get out 5 years,things will

    taper off, and they assume your rejection is under control.

    good luck in the future.

    • Hi Darell.  I am 18+ years out on my transplant. We had biopsies, if I remember correctly, once a week for a month, and then it tapered down to once a week for several weeks - we had 17 biopsies in all. For 16 yrs I had a yearly heart catheter until I began clotting.  The reason that I had asked the question about procedures in other transplant programs is because I am now 76 years old and I am wanting to taper down on some of the tests - which I have done this year. I will have no more nuclear heart tests "unless" my cardiologist sees or hears something that concerns him.  I have blood tests monthly and the big blood test twice a year to check prograf levels as well as creatine levels.  I see my kidney doc twice a year. I have never never rejected and most likely will not.  My feelings, and the doctors agree with me, that as I have now reached a normal age life span it's time to concentrate on the kidneys. I have a perfect heart and need to concentrate on the kidney problems that the meds have caused and do not need to stress my poor body any more than I have to.  And! The good news is that in four years I will be 80 years old. That's the key - I am now old.  I am so thankful to my donor family, my husband as well as all my family - I am so love and supported. Keep care of yourself Darell and thanks for commenting.

      • Hi Yvonne,

        Hang in there,  there is hope. I'm 22 months out from my Heart Transplant, get blood tests every 1-2 months, at 6 month intervals I get an Allomap and an Echo, and yearly just an exam and an EKG. Pretty non-invasive stuff. I guess different Transplant Centers do it differently, but the data they receive from the Allomap  and Echo's should tell them everything they need to know, assuming of course that the results are good. Maybe suggest to you're Physicians and see what they say. Either way, Good Luck to you.

        Glenn

         

  • Okay yes we are all different at each center. I go twice a year still and I am 15 + years post Heart txp. Usually the normal blood work ekg chest xray .

    Still getting heart Caths every 3 years but now in between those are  Echos and Nuclear Stress test. I Will Never tell them to Stop any tests. They are the experts. They are going to help keep me alive as long as possible. Am 59 now. And Want to break the 30 year mark with my transplant. Maybe a Lot Long also ??

    My Last Biopise was almost 10 years ago.

    I also have Blood in between those 6 month check ups 

  • Hello Yvonne and thank you for a good topic. I will be celebrating my 5 year heart anniversary this November and have had no rejection episodes to date (thank God).  My annual exam will include a right heart cath, biopsy, chest xray, lab work and EKG.  After year 5, I will be able to wait until year 7 then year 10 before I have to have another biopsy and cath.  I think that the tests we receive are dependent upon the transplant clinic protocol.   I think it is important that we ask questions about our medical care, so you are on the right track.  Hope you continue to do well.  Angel

  • hey yvonne,im 2 years out,first year was heart cath,and im going in tuesday,to have my nuclear test and biopsy,after 5 years they dont biopsy,i also see my local cardiologist once a year and his nurse,every 3 monthhs,no more xrays or ekg,for my annual visit,good luck

    • Thanks Frank.  These few answers that I have received from my question is really helping me to see that my decision to cut down on some of the tests that I have been routinely having for 18yrs is a right decision.  My heart is in perfect condition, at least it was last year at this time. One of my biggest worries is my kidney function - stage 3 kidney disease - 1.4-6 creatine level. I have had the kidney situation since before transplant while I was in heart failure waiting for a heart. Then of course the Cyclosporin that I took for the first 9 years of post transplant damaged them even further - add diabetes and I have a time bomb plus a clotting problem and a high potassium level. And! A nearly impossible food diet.Not complaining mind you, but I am at a point where I feel the need to cut some of the tests and doctor visits out. I think sometimes that doctors forgot that I have gotten older and that now many of my issues are really old age related.  Hopefully, I am not going to step on too many toes in the medical field when I present my decisions in October.  I do have my Cardiologists on my side and my Kidney doctor so we will see what happens.  Guess it really is all up to me. Appreciate your help.

  •   Hey Yvonne , I am only 3 years post heart, but I have not had a biopsy or heart a  cath  since  like 8 months out  of tx.  I get Allo map blood test for rejection , 2x per year ,  my yearly  mark on tx, I get the Nucular stress and  the dobutomane stress,  bout it,  Normal blood test every 12 to 14 weeks , my visits to my home town Cardio doc is once a year and I get the normal 15 min visit every thing is Awesome and see you next year .. 

      I hope your visit is just as awesome !! 

      

    • Thanks David. The Allo map blood test is new to me.  I have seen it mentioned here several times. Perhaps 18 years ago they weren't using that test yet.  I hated the biopsies. If I remember right we started with two biopsies a week and then tapered down to once a week. I believe we had total of 17 biopsies. I expect my visit to be a good one again this year. I do have other issues that I am dealing with that do not have anything to do with how good this great heart is but must be treated with meds as well - most caused from the immune suppressant drugs. Then of course age becomes a factor. After all that's the bonus of the transplant you do grow older.

      Hey David have an awesome evening!  I feel so much better tonight that I think I could dance a jig.

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