Another kick to the B*lls

[chiromac]

How to begin,  I was on going to Hemodialysis 3 times a week for 4:15 at a time.  After 3:30 hours my body started to hurt, my legs & arms would cramp and  I would be drained until late the next day.  This had been going on for 4-5 months and I finally got my doc to change me to 4 days a week at 3:15 per sitting. The 4 days a week seems to be working better and I'm starting to work out again.  The big problem was I could not workout or do anything active for the past 5 months and my A1C went back up and because of that I have been temporarily removed from the Transplant List.  However, that was not the worst bit of news, the heartless Transplant Surgeon informed me the wait time for B+ is now going to be 3 to 4 more years.  I can not bring myself to tell my 9 year old daughter that any trips together will have to wait.  Life is on hold, even longer now, I guess if I'm lucky I might have a kidney by the age of 47.  I have not had a drink in 10 years (my choice), but I can really use one now!

[jeannea]

The wait for kidneys is always a guessing game. They have to give you a worst estimate. But you could get a call before that. It depends on what matches become available. How long have you been waiting?

[Whamo]

You're a whiner.  Most "o" blood types have a 10 year waiting time.

[chiromac]

Thanks Whamo, you are a classy one!  Let me see if I understand, you can post and complain about your issues, but if someone else has issues they are "whining" That is amazing.  I know, I will run my all my issues and problems by you first to make sure they meet your interpretation of what is a real issue that someone is facing.

[jbeany]

You're a whiner.  Most "o" blood types have a 10 year waiting time.

Whamo, personal attacks aren't tolerated on IHD.  If you intended that as a joke, I'd highly suggest next time you make one, you avail yourself of any one of the multiple smileys on IHD to indicate that.  Also, telling someone they can't feel bad because someone else has it worse is just as helpful as telling someone they can't be happy because someone else has it better.

jbeany, Moderator

chiromac, hang in there.  I'm a B+ too, and I got mine in just under 3 years.  Believe me, it goes faster than you think. 

Please don't let the wait stop you from spending time with your daughter - and even traveling with her.  Long trips may be more difficult, but at 9, she's just interested in spending time with you, going anywhere and doing anything.  Why not find stuff to do within a day's drive?  Go for the weekend, explore everything you can locally, and make some fabulous memories for her.  The weird little tourist attractions close to you can be as interesting as some giant theme park - and less stress to visit.  What she'll remember years from now is that you went places with her - not that you made extravagant travel plans to far off destinations.

[okarol]

  Thanks jbeany.

chiromac - What do you have to do to get reactivated? is there anyone who can donate to you? The wait here for O blood type is 10 years, so we have a facebook/twitter search going for a living kidney for our daughter. She is also multi-listed in San Diego, which is a shorter wait. Do all you can to get reactivated. Good luck.

[noahvale]

^

[chiromac]

1st thanks for the info, just like everyone else I feel like I'm getting kicked again when I'm already down.  I've been on the list for a year and when I started they kept telling me it should only be a year or two and after Transplant Surgeon changed the story and said from this point it will take 3 to 4 years it took me back.  Then the heartless Transplant Surgeon like a bad comedian that had to add just one more bad joke she told me "your A1C has gone above my numbers and I will not let you have a kidney until it is lower".  Lets just say I felt the rug get pulled out from under me and my hopes and dreams where all crushed in under a minute.  I'm better now, as a Doctor of Chiropractic I've had to deal with heartless Surgeon before, but it just took sometime for me to get my head on straight and move forward. I'm on the list in ST. Louis and I'm looking to get on the list in Columbia, MO it is only an hour & 1/2 away, I hope that leave enough time to get there if I get the call.

 

[jbeany]

No reason an hour and a half should be a problem.  I lived 5 hours from the nearest transplant center and it was fine.  (Not that the friend driving me didn't get me there in 3 and half hours, but that's another story...)

[Whamo]

I apologize.  I was wrong.   I hope things improve for you.

[Deanne]

Even though you're on hold because of the AIC number, you're likely still accruiing time on the list, so it won't make your wait any longer. I had to go on hold briefly (a couple months at a time) twice and they told me I'd still continue to accrue time, it's just that they wouldn't call me if a match came up during that time. Hang in there - you can do this! 

[MooseMom]

I think Deanne is right.  Lots of people on the list are deactivated for finite periods of time for all sorts of reasons.  "Deactivate" is not the same thing as "removed", and like Deanne said, you are probably still accruing time.

When you feel like you've been kicked in the wotsits, it is all too easy to collapse into a state of inertia.  While it is true that all too many people on dialysis do not feel well enough for any kind of fun activities with young children, but if you are feeling well enough to start working out again, then I suspect you may feel well enough for all sorts of fatherly short excursions.  Jbeany had a lot of good ideas!

[chiromac]

It is just "Deactivate" not "Removed" so I believe you are right, I'm still on the clock

[jeannea]

You have to know they have NO idea how long. My center told me 2 more years and is was 6 more months. You are accruing time. Going on hold is not a big deal. If you report taking antibiotics for bronchitis you're on hold. For you it's A1C. It's all kinds of things. No one holds it against you. For me it was insurance issues that put me on hold for a while. Take a deep breath and relax. You'll be ok. Focus on what you need to do to get a better level.

[Wenchie58]

I was told my wait time on the list would be 3 - 4 years, I got the call after 15 months.  You just never know!  Keep your chin up!  Good luck!
 

[smcd23]

If you're temporary inactive because of illness, you still accumulate time. My husband was temporary inactive due to his old facility taking issue with him not having adequate insurance. He accumulated 4 years that way, so when he switched facilities that did like his insurance, he went right to the top of their list and got a call within a month of switching and being activated.

[chiromac]

Thanks to all, I'm moving on and not going to let it slow me down. 

[malaka]

I'm officailly "on hold" at my transplant center as I'm peeing too much protein which is bad for transplanted organ survival.  But I'm still accumulating time on the list, even though I won't get a kidney unless and until I lose kidney function.  Just had to do one of those
24 hour urine collections.  Sorry ladies, sometimes there is a great advantage in being male.

[amanda100wilson]

I live  north of Atlanta and would suggest that since you have a high PRA, Piedmont Hospital have a desensitization program whereas Emory don't   plus, the evaluation experience for me at Emory was a nightmare.  Piedmont were much more efficient on the day that I went there.  actually, at Emory, even though I was the first patient there, I was the last to leave, as I am pretty sure they forgot about me!  Piedmont's pool for paired donors (if you have a non compatible donor lined up) is from the National Kidney Registry so a pretty big pool. 

don't worry about traveling.  I don't believe that you should put your life on hold waiting for a transplant.  that's just my view, but if you are concerned, just limit the distances of your traveling.

[noahvale]

*

[lmunchkin]

Chiromac, you are smart to move on.  Just get the A1C down, so that when they test again & you and them both will be happy.  High Blood Sugars will stop you from receiving a kidney.  It is the number #1 cause of Kidney failure.  They are trying to make everyone understand that these tests are for a reason.  They want us to be more careful with this "Precious Gift".  I can just imagine how you felt when told, but it really is in your best interest, I believe. Hang in there, dear.  Your time, I pray, will come sooner than later.

I wish my husband was eligible, but he is not!  Too many medical issues there!

God Bless,
lmunchkin

P.S. Ive known Whamo for awhile now.  And I really do not think he meant it the way it came out.  I think he was just trying to show comparisons in wait time for B vs O.   It wasnt intended the way it came out, I sure of it!

[chiromac]

I just realized there is one small advantage of being on hold, I can turn my phone off at night.  I keep getting garbage calls and texted messages late at night, at least I can sleep a bit sounder for the next 3 months.     

[dublin]

How to begin,  I was on going to Hemodialysis 3 times a week for 4:15 at a time.  After 3:30 hours my body started to hurt, my legs & arms would cramp and  I would be drained until late the next day.  This had been going on for 4-5 months and I finally got my doc to change me to 4 days a week at 3:15 per sitting. The 4 days a week seems to be working better and I'm starting to work out again.  The big problem was I could not workout or do anything active for the past 5 months and my A1C went back up and because of that I have been temporarily removed from the Transplant List.  However, that was not the worst bit of news, the heartless Transplant Surgeon informed me the wait time for B+ is now going to be 3 to 4 more years.  I can not bring myself to tell my 9 year old daughter that any trips together will have to wait.  Life is on hold, even longer now, I guess if I'm lucky I might have a kidney by the age of 47.  I have not had a drink in 10 years (my choice), but I can really use one now!

Hi chiromac edd here i am 47 on dialysis just over a year had the same problems like you with severe cramps that moved up from my ankles  to my legs and then up to my stomach i cant do more than 3 hours at a go , so now i am cramp free as you know thats brill .  But the price is a bit heavy for me as i am doing dialysis 5 days a week so far about the last nine months . seen the lady doc who does the transplants and she told me bluntly that she would not even bother to talk to me because i am over weight , get to 90 kilos and i will talk to you and i will not be putting you on the transplant list either,  thats what i was told in about 2 minutes flat after waiting nearly 4 hours in a sweaty hospital just to hear that good luck.

[cattlekid]

90 kilos?  How tall are you?  I am at 97 kilos and I am 5 foot 7 inches tall and I had no problem getting listed for a transplant at two different hospitals here in the states.  Do you have an option of checking out another hospital?

Hi chiromac edd here i am 47 on dialysis just over a year had the same problems like you with severe cramps that moved up from my ankles  to my legs and then up to my stomach i cant do more than 3 hours at a go , so now i am cramp free as you know thats brill .  But the price is a bit heavy for me as i am doing dialysis 5 days a week so far about the last nine months . seen the lady doc who does the transplants and she told me bluntly that she would not even bother to talk to me because i am over weight , get to 90 kilos and i will talk to you and i will not be putting you on the transplant list either,  thats what i was told in about 2 minutes flat after waiting nearly 4 hours in a sweaty hospital just to hear that good luck.

[gothiclovemonkey]

I am 29, single mom of a hyper active 8 yo boy. hes my life! I often have really really crappy dialysis, and feel like crap most of the time, but i still do try to get out with him and do small things, like bowling, or swimming, library or just a picnic at the park (i typically sit on my backside, while he runs wild) even a small shopping trip where he picks out a new book, or toy or outfit, etc. go to the movies (although those are ridiculous, some places around here offer a kids matinee day- free!)
Since you have a girl, let her have a tea party or a 'spa' day and paint your toenails! It would be great for her, and relaxing for you~
If you feel well enough, one thing we do during the warmer months, go on a 'safari' and pick up loose leaves and flowers and weird rocks and such along our walk. its fun. go home and look up what they are, or look up random animals online...
there is really SO much you could do with her that would be fun and amazing, that doesnt require toooo much energy. and when shes older and knows what all you did despite the fact you didnt feel well.
i hope you can fix the list issue, i too have issues that is keeping me off the active list.
good luck, and most importantly, enjoy your little one! REmember it is the simple things they will love and remember!
One of my fondest memories of my mother (who was always really sick, and died young) was laying in bed with her, she would name my freckles, and tell me what flavors my fingers were.... weird i know, but one of my best memories!