Frustrated and confused

[dreamcatchinglady]

Hi everyone,
Well I was wrong about my biopsy in March. One nurse told me inflammation but no rejection but the other transplant nurse said yes rejection but it was less that's what the inflammation meant. So I didn't get the zero that I wanted. Now I just had a biopsy and clinic yesterday and they said I still have rejection and it was between a 1 and 2. They are keeping my meds the same and said just call them if I have any concerns. I've been really dizzy lately sometimes during the night and I don't know if that has anything to do with the rejection. But I'm disappointed that I have had rejection 3 times straight.Sorry guys I just really needed to vent.
On a brighter note I walked about 2 miles today and also I am taking volunteer orientation at a nature center because I love the environment. So even with all this stuff going on I gotta keep trekking that's what life is about right. Thanks everyone for listening. God bless you.

[Linda]

Kimberly, I certainly hope this turns around for you on the next biopsy. I'm glad you've got your diversions and able to walk so well. That will help you get thru the rough days. Thinking of you, Linda

[Sarah]

that sucks. i'm so sorry. vent all you want. we are here for you.

hang in there!!

S

[Midge Rollins]

Kimberly, I think the rejection issue is a big deal for we patients. The Dr's on the other hand deal with it more often and play it down. I had a 1 a year ago and was very upset. They did nothing with my meds and all was well. It is scary but keep up your walking and remember if they were real concerned they would zap you again with the prednisone. I know a couple of people that have never been a 0 and they are 3 years out. Mayo, said they are actually thinking of grading these in a different way. So, hang in there and yes 0's are great but so are 1's if there is no problem. I do not think the dizziness is related. check your BP, and if you still are concerned in a day or so call your Dr. Best of luck.

[Lisa Salberg]

Looking at this from a different point of view... I do not like the word "rejection" - Yes I know it is clinically correct but it sounds so much like a 'failing grade'. I guess you can say I feel much the same way as the word "recall" when dealing with device problems.

Kimberly - REJECT rejection! Love your heart and do not feel like it is 'rejecting' you... it is not it is just getting use to its new home - at least that is the way I would like to see it! Take the meds - work with your docs and have the atttitude that YOU will accept this heart and it you!!

Ok did that all come from left field...maybe so but sometimes it helps to think outside the box...and I know I was way out on this one ;-)

Big hugs from NJ!!!!
Lisa

[Largehearted]

Lisa.

This is a subject I have no experience with at all, but your explanation resonated with me. Thanks.

Leon

[Aimee]

Kim this is how it was explained to me: A zero is very rare..... A 1 is common and per pathology it says inflamation mild. 2 a or b this is the start of rejection ... mild to med , and 3 a or b is rejection and we will do med changes, when you hit 3b and onto the 4 level you are usually ill, and in the ICU or ICU step down on meds and drips. I've had 1 a and b no med changes and I've had "0" this past couple. Rare yes but even more surprising since I had such a wicked transplant. My advice is keep moving, keep your meds spaced 12 hours apart for the antirejection meds. Keep all your appointments and drink fluids like tomorrow will never come. Hydration is so important ... I too had the spinning or dizziness when I would lay down in bed. I was also very dry and needed fluids. Then I was to wet and just came home today from 24 hours in the hospital to correct the fluids ... I had gained 11 pouds in 2 days and had feet and legs like an elephant ... but a zero Bx........ results. It will all find a happy medium soon ..for you and me !! ( I've also been a 3a/b)