Waiting to get on the list

[rookiegirl]

I would continue to call and bug the crap out of them until they give me the info i want or need   Sometimes having a relationship with your neph does not help, i remember my neph asking ME if i was on the list, WTF?      Shouldnt he have known that on my paperwork or something?  Well, then again I did change nephs but still, you would've thought that he can find that info on my chart huh?  lol,  and with me being overweight, they wouldnt put me on the list anyways so wouldnt he have known that too?  even though i have a living donor and my donor has gone through the tests and found we were a match and everything, but then again, because of my weight, they will not operate on me  

Goofynina, are you in the process of losing weight for a transplant?  I was told at my evaluation that I need to lose about 20 lbs.  And the holidays are just weeks away!  Arrrhg!  As soon as my arm stops hurting from my fistula I plan on hitting the gym, as well as change my diet. 

What is the maximum weight would they consider for a transplant?

[lola]

I think it has to do more with BMI then weight. We were told UNOS ads names on the 15th and 30th of each month unless it's emergent don't know if that's true or not though. Hope all gos well

[Joe Paul]

By the way.... if you smoke you won't be on the list.

Is this if you currently smoke or if you've ever smoked?   

I wouldnt say "you wont be on the list", they ask you to stop smoking.

[goofynina]

I would continue to call and bug the crap out of them until they give me the info i want or need    Sometimes having a relationship with your neph does not help, i remember my neph asking ME if i was on the list, WTF?      Shouldnt he have known that on my paperwork or something?  Well, then again I did change nephs but still, you would've thought that he can find that info on my chart huh?  lol,  and with me being overweight, they wouldnt put me on the list anyways so wouldnt he have known that too?  even though i have a living donor and my donor has gone through the tests and found we were a match and everything, but then again, because of my weight, they will not operate on me 

Goofynina, are you in the process of losing weight for a transplant? I was told at my evaluation that I need to lose about 20 lbs. And the holidays are just weeks away! Arrrhg! As soon as my arm stops hurting from my fistula I plan on hitting the gym, as well as change my diet.

Nope, there is too much weight for me to lose and being on PD, i think it would be impossible for me to lose the amount of weight i need......i am doomed 

[charee]

I would continue to call and bug the crap out of them until they give me the info i want or need    Sometimes having a relationship with your neph does not help, i remember my neph asking ME if i was on the list, WTF?      Shouldnt he have known that on my paperwork or something?  Well, then again I did change nephs but still, you would've thought that he can find that info on my chart huh?  lol,  and with me being overweight, they wouldnt put me on the list anyways so wouldnt he have known that too?  even though i have a living donor and my donor has gone through the tests and found we were a match and everything, but then again, because of my weight, they will not operate on me 

Goofynina, are you in the process of losing weight for a transplant? I was told at my evaluation that I need to lose about 20 lbs. And the holidays are just weeks away! Arrrhg! As soon as my arm stops hurting from my fistula I plan on hitting the gym, as well as change my diet.

Nope, there is too much weight for me to lose and being on PD, i think it would be impossible for me to lose the amount of weight i need......i am doomed 

hey susie i too have to loose a shit load of weight before i can get on the list, they told me to loose 15 kilos first then they will review me i have an appointment with them in december,all up i need to loose at least 30 kilos, so far i have lost 11kgs and thats been really hard work i walk every day now started off slow and have worked up to walk 6km its going to be along hard road but i'm determinded to get there eventually

[goofynina]

Wow, that is great Charee, sounds like your on your way girlfriend, keep up the great work    Are you on PD? i am sorry i cant remember    My hips and back are so bad, it is hard for me to walk for very long without being in agonizing pain and the PD solution has so many calories, its like whats the point, lol, and honey, i wish i ONLY had 30 kilos to lose    oh well, more for me to love i guess 

[charee]

Wow, that is great Charee, sounds like your on your way girlfriend, keep up the great work    Are you on PD? i am sorry i cant remember    My hips and back are so bad, it is hard for me to walk for very long without being in agonizing pain and the PD solution has so many calories, its like whats the point, lol, and honey, i wish i ONLY had 30 kilos to lose    oh well, more for me to love i guess 

well i did say at least 30kgs i know they will want more but i don't know about that i do home hemo every second day for 7 hours ,i can understand how hard it would be for you to exercise with a bad back

[goofynina]

I have even thought of getting the band or gastric bypass, but by doing either one of these, i would have to end my PD treatments (cuz they would have to cut my peritoneum) and i am not ready to do that, so i guess i will wait until it gives out by itself to see how if i am able to do it then.  I swear, this shit sucks doesnt it, lol, but hey, i'll take it over the alternative any ol' day thats for damn sure 

[rookiegirl]

My husband and I attended 1 of 3 sessisions today.  1st session is pretty much a transplant education class.  There were 2 transplant coordinator that did a class presentation going over the priliminary process.  There were 4 other patients there with their friends or family member.  We were there from 8:30am-2:00pm.  The first few hours we watched a video tape and they went over a powerpoint.  Then we individually spoke with the transplant social worker, followed by the transplant financial advisor.

2nd session will be schedule 2 months from now.  This will be with the transplant surgeon and his/her team.

3rd session will be the Day Hospital where they start the testing process.

The information given to me today was overwhelming.  Lots and lots of information.  But, it was very informative.  I learned so much like:
- what they look for when it comes to matches (Blood Type, Tissue, Size of Kidney, Time on the list, Medical Urgency).
- costs:  average transplant $90K.  average monthly medication expenses $6K
- testing: heart, lungs, vascular system, etc...
- average life span on cadaver(deceased) donor is 8-12 yrs vs. living donor is 15-25 yrs.
- potential donors must be under 60 yrs.  No Diabetes, No Hypertension, No Drug Use.
- imperative to be compliance when it comes to taking medication.
- difference in "Status 1 vs. Status 7".  Status 1 means all your testing came back great and the team gives the finally determination that you are good to go on the list.  Status 7 means they found something else in your test and want to continue more testing.  Even though you are considered Status 7, you will be on the list as "inactive".

Lots of information, but some of you may already been through all of this before.  Thought I would share.

Thanks,

[okarol]

Good info, thanks.

Hope all goes well!

[rookiegirl]

Here's the latest about my journey to the "Waiting List".  I just found out the current Hospital my Dr belongs to is outside the network coverage for my insurance.  Now, my Dr will have to send a referral to the network Hospital which is 1hr away from where he is.  I guess I have to start all over again with the other hospital.

I don't mind so much about switching hospital because this one will be a little closer to home.  But, I'm afraid it's going to take even longer for me to get on the waiting list.  I'm starting to loose hope.  I can't believe it takes this long just to get on the list.  I can't understand why some people who are not even on dialysis are already on the list.  What I'm I doing wrong!! What is my Dr/Nurses/etc... doing wrong!!!!  Is this normall process?

You have people out there that are not even on dialysis and they are already accruing time on the list.  I apologize if I have offended anyone.  I'm just angry right now.

Also,  another complaint, the transplant financial worker gave me a form to fill out.  It asked about our house hold income, expenses, 401K, savings, checking, etc....  Why do they need to know how much money we have and what we spend it on monthly?  What does this have to do with transplant???  Is this a way for them to determine if I can afford the meds after the transplant?  If so, this would be unfair.  So you mean to tell me, if I was dirt poor I can't have a transplant because I can't afford to pay??? That is not fair for those that have financial hardship.  It's bad enough, we have to deal with ESRD and now this!!!!!  I just don't UNDERSTAND.

[Joe Paul]

Here's the latest about my journey to the "Waiting List".  I just found out the current Hospital my Dr belongs to is outside the network coverage for my insurance.  Now, my Dr will have to send a referral to the network Hospital which is 1hr away from where he is.  I guess I have to start all over again with the other hospital.

I don't mind so much about switching hospital because this one will be a little closer to home.  But, I'm afraid it's going to take even longer for me to get on the waiting list.  I'm starting to loose hope.  I can't believe it takes this long just to get on the list.  I can't understand why some people who are not even on dialysis are already on the list.  What I'm I doing wrong!! What is my Dr/Nurses/etc... doing wrong!!!!  Is this normall process?

You have people out there that are not even on dialysis and they are already accruing time on the list.  I apologize if I have offended anyone.  I'm just angry right now.

Also,  another complaint, the transplant financial worker gave me a form to fill out.  It asked about our house hold income, expenses, 401K, savings, checking, etc....  Why do they need to know how much money we have and what we spend it on monthly?  What does this have to do with transplant???  Is this a way for them to determine if I can afford the meds after the transplant?  If so, this would be unfair.  So you mean to tell me, if I was dirt poor I can't have a transplant because I can't afford to pay??? That is not fair for those that have financial hardship.  It's bad enough, we have to deal with ESRD and now this!!!!!  I just don't UNDERSTAND.

Not sure why they want all your income information, that does sound strange. Changing hospitals isn't a bad thing though, I changed from UPMC who had more hoops than a three ring circus, and spent over a year trying to get on their list, to another hospital who accepted previous testing and only made me do a stress test, and 2 weeks later being on the list. Hopefully, you will have the same results. Hang in there though, it does get fustrating, but when you do make the list, it is a different type of waiting, one with more hope.

[livecam]

Ok, you are not offending anyone.  You're right, the whole thing is a huge pain you know where.  If the hospital you need is out of your doctor's network why not just approach that hospital and get a new doctor there.  Your current nephrologist isn't going to be performing your transplant anyway and you'll likely see a transplant nephrologist following your transplant who will be yet another doc.  The financial stuff is another source of discomfort but rest assured if you were dirt poor or better yet a foreigner you'd be transplanted no questions asked.  I've seen it, isn't that nice?  Just fill that stuff out and don't worry.  They aren't going to not transplant you because of that.  With a kidney transplant Medicare is behind you just like for dialysis.  They will pay a large chunk of the transplant and immunosuppressant drug costs so not to worry there.  You know when someone needs a liver or a heart you hear about familys having to raise some ungodly amount of money to pay for the surgery etc. before a hospital will say yes.  That isn't the case here so rest a little.

Just relax a little and keep jumping through the hoops.  Remember to be compliant on dialysis because thats one of the major factors they're looking at in terms of putting you on the list and keeping you there.

Good luck!

[rookiegirl]

Great News!     I received a call yesterday from the transplant general surgeon's office.  They want to see me today (3/20/08 @ 2:30pm).  This is 2 of 3 sessions.  Getting closer to that transplant list if all goes well.

I told the coordinator about what my primary insurance told me.  The current hospital I'm seeing is consider out of network and will only cover 60%.  The coordinator told me I still can use the hospital because Medicare will cover the rest.  So another good news, I don't have to switch hospital after all. 

Wish me luck today.  I hope everything goes well and they deem me a good candidate for a transplant.  If all goes well, I hope the 3rd session (testing, testing, and more testing) will be a success.  I can't believe it's been over 5 months since I started PD.  How time fly.

 
RG

[xtrememoosetrax]

Good news on the insurance, and glad to hear you're getting one step closer to the transplant list. Good luck, Rookiegirl; I'll be thinking of you!

[Laurie]

Good luck Rookiegirl. 

[okarol]

    Oh Boy! I hope all goes well! Please let us know how it goes!   

[Psim]

I'm so glad you got that straightened out! Hope you sail through your next appts and are listed very soon!

[willieandwinnie]

Rookiegirl  Please keep us updated. We are pulling for you.

[rookiegirl]

Hi All,

My meeting with the surgeon yesterday really went well.  We talked for 2 hours.  Basically, he repeated the same information that I learned in the 1st session.  I still thought it was informative and learned so much more.  He made me feel at ease.  He is 1 of 3 transplant surgeon and he happens to be the director.  His only concern and regret is that it's taking me this long to get on the list.  He apologize several times about the process and he wants to personally change it.  He told me to make sure to call next week to see if they have scheduled my 3rd session which are the intents testing.  He told me to make sure I tell the coordinators that he demands that I be scheduled ASAP.  Is this great or what.  Will see if it works.

I hope they schedule the testing soon and I can be on the list.  The wonderful thing I learned was if I'm listed under this hospital, I'm also listed at the other 3 hospital within the region.  I also didn't know that I can be entered in the nationwide database for a perfect match (6 antigen).  I thought I would only be limited to 1 hospital and 1 hospital only.

He encourage living donors and I explained to him that I don't feel comfortable asking family/friends to donate to me.  I just don't want to inconvenient their lives.  I don't want to take time away from their own family/employment/health.  I also fear that I will have to owe the donor the rest of my life and feel obligated to serve them.  I don't want that stress.  I'm the type of person that if you do something great for me I feel obligated.  This is why I limit myself from people.  Crazy  I know but this is how I feel.

I have 3 half sisters who are not my blood type.  I have 2 half brothers whom I don't know what their blood type, but they both smoke/drink/party all the time.  They haven't been to the Dr. in decades.  God knows what they will find.  I have a friend who is my blood type, but she is a single Mom who had a previous aneurysm about 10 yrs ago.

The surgeon mentioned also about a networking donors.  This where you have a donor who is not a match for you but might be a match for someone else and that someone may have a donor that matches you and so forth.  I believe someone on this forum is going through the same scenario.  I can't remember what thread it was that I read.  Only problem with this is I don't have a donor willing.  First of all, I haven't ask.  I don't know how to ask.  Everyone around me knows I need a kidney.  It doesn't take rocket science to know this.

Like I said, I don't feel comfortable and I don't want to burden another person's life.  I'm just unfortunate this is happening to me and I don't need to burden anyone else.

Sorry for the lengthy blog.

[okarol]

Good post rookiegirl. I just wanted to say that although most people around you "know" you need a kidney, very few people realize that there are not enough deceased donor kidneys to go around. They don't know that a friend or stranger can be tested and be the donor, not just family members. They don't know that some people do fine on dialysis while others do not. So sharing your knowledge will not just help you, but it will bring awareness that will help other patients too.
I hope your evaluation goes well!

[Psim]

Hi RookieGirl! The transplant folks really encouraged me to start asking people too. So finally 2 weeks ago I emailed a letter to everyone I could think of. I felt just awful while I wrote it -- like who am I to ask such a huge thing! Before I sent it out, I showed it to a close friend who I knew was not eligible to be a donor, and asked for her honest feedback. She said I was very clear that donating was a personal decision, and that I was not guilting or pressuring anyone. She said that sending it as an email made it easy for people to take their own time to process it, and gave them the option of responding or not. That made me feel a lot better, but it was still hard to send it out.

Since then, I've gotten many replies -- mostly from people who can't offer  kidney but who want to forward my letter to others, and to wish me luck with finding someone. So many people have said great things about my letter, it's wiped out any last nagging bits of feeling bad for sending it out. And 3 people have called the transplant centre to start their paperwork to see if they can be donors.

It's totally your call whether you send out a letter or not. You know what makes sense for you, and I know folks here will support your with whatever you decide. Best of luck, RookieGirl!

[rookiegirl]

I received a call today from one of the transplant team. They want me to come to day hospital tomorrow for my health evaluation.  I'm to admit myself @ 7am and hopefully, be done around 4pm.  They told me not to eat or drink after midnight.  If I need to take my meds in the morning, only drink with little water or if I can just hold off all together.  I can't drink water on an empty stomach. I get very nausated.  What should I do?

I'm excited  but scared at the same time.  I'm scared they might fine something with me that will not qualify me for a transplant.  All I can do right now is pray.

[Sunny]

Wishing you best of luck and I hope all works out well for you. It will be wonderful for you to be on the transplant list.

[paris]

Rookiegirl, my team kept assuring me that they weren't trying to find something to rule me out for a transplant, just trying to figure out if they needed to fix anything before the transplant.  That reassured me (a little).   I'll be thinking of you!  Fingers crossed it is a good day for you.