Grumpy

[paris]

I just got paperwork in the mail for my annual round of tests to stay active on the "list".  Simply put, I don't want to do it.  I will, but I don't want to. It seems pointless.  I feel it is only a financial gain for the transplant center. The surgeons keep telling me with my PRA, it isn't a reality to expect a cadaver kidney.  Yes, I know, miracles do happen.  There may be just that one kidney out there for me.   But, seriously, we all know how few kidneys are available and how many are waiting. The odds are not in my favor.   I am grumpy!  I haven't talked with family yet, they don't know about the appointments.  This is the 5th time to do the tests.  I am kind of over the whole thing.   No, I am not really depressed -- just realistic.  My life is good. These appts. are just annoying me.  Maybe if the IVIG and Rituxim had made a difference, I would feel different. But they didn't reduce the PRA one bit.   My hope is to voice my grumpiness here and feel better!   Hmmm, not working yet!       

[iketchum]

Your chance for a kidney may be not that good, but as you said you do have a chance. Do the tests and answer their questions, hang in there.

[okarol]

It is a pain to keep up with the annual evaluations but there's no real reason not to do it paris. And, since more and more hospitals are becoming involved in paired exchange programs, the pool of potential matches will go up (didn't you have a couple people who are willing to donate? Would they maybe swap on your behalf?) I think the Alliance for Paired Donation is available near you..? Anyway, I am sorry it's so frustrating and I wish the treatments had improved the PRA status. If it were me, I would not quit the waitlist until you've started dialysis and decided that it is your treatment of choice. Just my 2 cents. I wish it was easy. Hang in there my friend. 

[Darthvadar]

Hope it all goes well for you, Paris.....

Love...

Darth...

[Rerun]

The reality that I have a 2% chance of ever matching anyone and the fact that all these annual tests just line the medical people's pockets with money..... the same people who are against the donor getting a dime is exactly why I won't be listed.  I will not be one who "dies waiting".  I'm not waiting.  They're not making money off me.  The dialysis centers make money off me.... yes.

[RichardMEL]

guys let's not forget our own Wattle who was told the chances of her getting a match were very low... and not that long later she got a 5/6 match?!?!?!!! And that's in a relatively tiny country with poor donation rates like Australia. Don't lose hope!

While it's true that I don't have to go through ongoing tests to keep me on the list (they take transplant bloods every 2 months so they have a fresh sample for cross matching, and to obviously test for nasties etc) I think it is important to do these tests and keep yourself there.... because who knows when or how - like the lottery you need to be in it to win it.....

 

[glitter]

guys let's not forget our own Wattle who was told the chances of her getting a match were very low... and not that long later she got a 5/6 match?!?!?!!! And that's in a relatively tiny country with poor donation rates like Australia. Don't lose hope!

While it's true that I don't have to go through ongoing tests to keep me on the list (they take transplant bloods every 2 months so they have a fresh sample for cross matching, and to obviously test for nasties etc) I think it is important to do these tests and keep yourself there.... because who knows when or how - like the lottery you need to be in it to win it.....

 

well said- I dont have to go through it- so I probably don't get it, but I am glad you all do the things you have to - to give you a better chance to keep being here- whatever that is.   

[cariad]

Paris, I hope you take everyone's advice and do the tests to stay on the list. I never had to do follow up tests with any of the hospitals where I was listed, just send the blood once a month to Chicago, once a year to California hospitals. The tests are an ordeal, some are even uncomfortable, but I hope you stick with it. Try to schedule them all over one week, get through them, and enjoy your 51 weeks "off".

PRA can fluctuate, too. I don't know if this is something that could happen with you, but mine certainly did. And, when they figure out even better ways to overcome this problem, we want you to be first in line.... 

[Sunny]

Paris,
Go ahead and get those tests done. Don't shut that door completely yet.I have high PRA's too and know what it feels like to think it's never going to happen. But if you don't do the tests, then it certainly NEVER will happen.Just give yourself a few weeks rest from the thought of doing all of those tests again, and then get to it.

[paris]

You all know I will do them, just like I have for the past 5 years.  I just need to voice frustration where people understand.    They are scheduled for June 15th at the center, then a few others here in town. Just the same old, same old.    My PRA has not fluctuated one degree in all the years.  Just likes to be at 100%.  We spent lots of out of pocket money for the IVIG and Rituxan, and you know those results.  There does have to come a time when you accept what is.  Look how many other members aren't eligible for a transplant.    Yes, there still is the paired donation plan. The one thing we haven't tried.  But,my potential  donor's situations have all changed in the past years.  Also, age will start to become a factor at some point.  Not yet, but someday.     I am active on two lists. The surgeons at both centers are very honest with me.    More than anything, the tests are a reminder of what hasn't happened.  At the beginning, it all seems so simple and I was fortunate to have so many offer to be tested.  Then roadblocks crop up.  My positive energy and Susie Sunshine attitude wears a little thin some days and I just wanted to voice my displeasure and get it off my chest.
 
Cariad, I am surprised you have not had to renew any of the tests, especially ones involving the heart.  How do the centers know if you have had any health changes or new concerns?  I do the monthly blood sent to the centers. And tests done at one center are accepted at both centers.     I am always the first to do anything that gets me a transplant. Doesn't mean I have to like it!   

[cariad]

Paris, I'm not sure why they didn't ask for heart check-ups. Then again, I had to have a final EKG and x-ray before transplant, so if they were going to do that anyway, why make people continually get these checks? I think California basically had the attitude of "That girl is sooooo not getting a kidney off of this list anytime soon, so let's not put her through it." (Average wait was up to 10 years when I was listed!) Chicago was obsessive, making me have tests that no one had requested before, so if I had spent over a year on their list, I think I would have had to redo them.

I can empathize with the frustration and the feeling like you just don't want to be reminded about all of this. Good for you for soldiering on anyhow. I am not at home to Suzy Sunshine, and certainly think it is healthy to just let yourself acknowledge how much this can suck sometimes. I'm glad you're letting it out. 

[paris]

Thanks   

[Sunny]

I think it's a good sign they want you to have the tests done. It means they have you on their mind and they are looking at your options.
That's good news. My transplant center wants nothing from me. They tell me they'll call me, no need to call them, should they need some tests done.
That kind of attitude tells me they don't expect I'd be getting a transplant anytime soon. (my PRA is 86%).

[paris]

I waited this year for them to call me. Usually, I remind them that it is the anniversay of being listed and they schedule the tests.  This time, I waited and it only took them 4 months to figure out that it was time.        Really, the only thing gained is their revenue.   It is surprising how different each center is.  You would think there would be some consistancy between them.  Do you send blood draws to you center monthly?  If not, I wonder how they can match deceased donors when they are available.    Someone needs to get all the centers on the same page, at least to make it easier for all of us.       Anyway-- tests will be done. Mammagram, dentist, etc etc.  Yuck!  And then the day at the center.  Oh and I need to meet with the financial co-ordinator again, to make sure I still have the same coverage.   IE: to find out if I can afford to have and maintain a trasnplant.   Again, money.  Last year it was a redo with the social worker to determine if I have finally lost my mind from all of this           I was the one who had to ask about the infusions for PRA.  If I hadn't known what they were, they would have never said I word.  Thanks to IHD, I am a well informed patient.   

[paris]

The tests are done for another year.  There are a couple I need to do locally, but for the most part, I am done.  Nothing new - same as always.  PRA is still 100%. They tell me I am right at the top of the list and could get a call, but the PRA will be the problem.  Dr. said just keep hoping for a miracle.   Also said that she told me 3 years ago I would be on dialysis in a matter of months and she can't believe I am still hanging in there.  But, did mention I would probably feel better if I started.    We discussed aging and what would determine if a patient was too old to transplant.  She assured me they have had many in their 70's and that she wouldn't think about me being too old until I was 80!  They kind of look at me as their pet project.  I am unique compared to the "normal" patients.  HA!!    I am tired -- I think emotions can make you more tired than a workout.   Just glad the day is over. 

[cariad]

Congratulations, you did it! It sounds like your center is really pulling for you, and that cannot be bad.

[Sluff]

Get er done. Paris ... don't make me come there and force you to do them...     

[okarol]

Paris, when a patient is on dialysis the center usually sends a blood sample each month to the transplant team.

I am proud of you for taking care of yourself!

Jenna's PRA is 97% so it will be a long time for her, hopefully she can hang on to her Brave Little Kidney for a while.

I hope you get your miracle soon! 

[MooseMom]

Apologies for being rather thick, but I'm not sure what PRA means; I'm assuming it is a sort of antigen and that the more you have of it, the lesser your chance of finding a good match.  Am I close?  How do you know what your PRA is?  I take it that IVG, etc is supposed to lower those levels?  I'd appreciate any explanation.  Thanks!

Oh, and good for you,paris, for just getting on with it.  Like others said, you gotta be in it to win it.

[monrein]

Panel Reactive Antigens  and yes MM, the higher the PRA, the harder to find a matching donor kidney.  Things like blood transfusions, pregnancies and kidney transplants will generally raise a person's PRA and one knows the number through the testing process.

[paris]

Paris, when a patient is on dialysis the center usually sends a blood sample each month to the transplant team.

The center provides me with red top tubes and mailing packages for monthly blood draws, so they have it for testing.  I just have it done with my regular lab work and they send it off to the center.

[Sunny]

Glad you ran the gauntlet and finished your testing.
Let's hope for that little miracle for you that does happen on occasion regarding a perfect match.
It should be noted here, that Paris did IVIG treatment and it did NOT lower her PRA's. IVIG treatment does not always work.I wish it had for you, though, as I am in the same predicament with PRA's so it makes me very aware.

[RichardMEL]

Interesting. Our transplant bloods are done every two months. Mine's TOMORROW!!! They already have it all prepared in my folder(I saw it on Tuesday). I always sign the form and wonder "will THIS draw be the one?" lol.

Paris glad you got those tests done!!! 

[Sluff]

See how well my threats work...   glad you got them done Paris.

[Des]

Good for you.... we only get tested on a monthly basis once we reach the top 24 of the region list (top 24 including all bloodgroups) I am only no12 on the O bloodgroup list. I can't wait.!!!!!! Once this happens I know I will be taken into consideration for an available kidney.

I hope yours goes quickly.!!!!