I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: George Jung on October 03, 2007, 10:11:25 PM
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I would have to say that my day today was easy street compared to what I had imagined it would be. I registered at 8:30, echocardiogram (pictures of heart) @10, renal ultrasound @10:30, cheat x-ray after that, then found my way to Wendy's for a out of the ordinary fast food "meal". Al (my uncle) met me at 1:00 for a meeting with the donor coordinator which went very well, she is awesome, all smiles and very happy to be doing the work she does, it made our meeting enjoyable for sure. Then we met with the financial coordinator and that also went off without a hitch as I am well covered with BCBS and Medicare and therefore should not have any issues with expenses.
Al had to leave and I was left with one more meeting with a Neph. I was brought into the room and a nurse/tech took my blood pressure and temp then informed me that the Doc should be in very soon as they had been running on schedule all day. I was expecting just that as all of my appointments had been very close to scheduled times. So I sat in the chair put my head back and dozed for a few minutes, kind of tired at this point. Well, I woke up, looked at my watch and an HOUR had gone by. I walked out of the room and the nurse/tech was a few doors down so I made eye contact and asked what happened, "do they know I am here?" She said, oh yes they know, they must have gotten busy. 5 minutes later the Neph comes in and right away apologizes and says they DIDN'T know I was there, someone put my chart in the wrong place or my name was in the wrong place (can't remember exactly as I was in disbelief). I just smiled and blew it off...."Poster Boy" that I am and all that. Anyway, he asked the general health questions, checked me out, we talked, and I was on my way to do my labs to finish the day (blood work and EKG). Upon checking out I was given a parking validation slip "because you waited so long", what a swell thing to do to make nice for FORGETTING ABOUT ME. Anyhow, I made it home by 5:30ish and to opening night for the Carolina Hurricanes (NHL) game by 6:45.
It was a good day, much better than I had anticipated. I was told by the donor coordinator that my mother has begun testing to be a donor, her blood type is O, and she has gotten up to date with her physicals. I am not getting excited about this though as it is to early in the process yet and there are issues with our personal relationship. I know I would be foolish not to accept but I need to talk some things out first with an outside listener. My mom and I have talked maybe three times in the past 8 months or more and we always argue so there are some questions there. She has already told the donor coordinator that I may not be willing to accept so she (coordinator) is aware and will be leaving it up to me, naturally.
So there you have it, my day of ups and downs from health issues to loosing the hockey game in overtime. Hey at least we earned a point right!
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Yay! We are so happy for you! It sounds great :clap;
We actually just got a call today from the transplant coordinator here that we will be working with. We're right behind you, George!
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:yahoo; Yeah to George and Wade!!! Good luck! :grouphug;
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Glad it went well for you George, other than the being forgotten that is :thumbup;
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Wow! That is great your testing is underway. I'm hoping you get your transplant soon. Good luck with everything!
Beth
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We spent years waiting... on the list... in the doctor's office... at the transplant evaluation... for the labs... but in the end it's worth it.
If I am ever left for too long at a doctor or dental appointment I just walk out and find someone and I say loudly, "Oh great, you're all still here, I was beginning to think the building was evacuated and no one told me" hehehe ;D Then they usually get me taken care of so I don't start a panic.
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Good Luck to you wade and George. :2thumbsup;
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Good luck on everything :grouphug;
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Good Luck to you! :cuddle;
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Well, other than them forgetting you, i'd say it sounds like "so far so good" :2thumbsup; I hope it continues to go good for you my friend :clap;
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Good Luck George, hope it all works out for you :grouphug;
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Good Luck George. A little step closer to a Transplant. :cuddle;
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Good Luck Georgie.... ;) I hope your that bit step closer on getting that Kidney transplant you deserve. :cuddle;
Amanda
xxoo
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I received a call from the transplant coordinator about my next set of testing. She called to inform me that there will be an additional test to my next visit at the hospital. A cyst was picked up on the renal (kidney) ultrasound which will require a CT scan to learn more about it. She noted that it was not an uncommon finding in dialysis patients.
Thank you everyone for everything. - George
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Good Luck with your test. :)
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I hope that its nothing and it wont delay any further testing :2thumbsup; Please let us know when you get the results, just want the best for you amigo :2thumbsup;
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I just saw this- good luck with all of it..... :waving;
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Good Luck with the evaluation process. All I can say about mom is that she still loves you since she is willing to donate to you.
Good Luck
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Good Luck George and hope the cyst is normal. :beer1;
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They check for cysts once a year for me. It is common for dialysis patients to develope them. You know I am wishing the best. There will always be more tests than they orginally say--just keep hanging in there!
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Good luck George, I hope it turns out to be nothing :grouphug;
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Good luck, George! Hope a great kidney comes along very soon for you.
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Hi George, glad things went well. Don't be worried about the cyst at this stage. I had a couple of small ones, they were nothing, and also my dad had a small one on the kidney that I received if I remember correctly. None of these cysts were of any significance, hopefully yours is the same.
Re the issues with your mother, is the transplant team able to offer/refer you to a counselling service or mediator who can speak with both of you to help you both come to an understanding of exactly what your feelings are and how they can best be dealt with? I guess the sooner you sort this out, for your own emotional contentment if nothing else, the better. The fact that you argue often does not necessarily mean you cannot accept a kidney, but it is entirely up to how you feel about it of course. But some professional guidance to help you make this choice might be a good idea so that, in the long run, you'll know you made all the right considerations and didn't do things wrong because you were under emotional and physical duress.
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Good luck George! I hope everything works out well for you. My thoughts and prayers are with you. :cuddle;
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:clap; George,
Sounds like they got the ball rolling. I know the transplant team at Methodist Hospital here in Indianapolis the Dr's , Nurses and staff are awesome. Very caring people wanting to get the kidney for people. The are as excited as the person getting it is. Thats what more hospitals need to be like. Goodluck and keep me informed!!! :bandance;
Lori/Indiana
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I have an appointment to meet with a Transplant Social Worker at UNC. Anyone care to shed some light?
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I love my transplant social worker.
They deal with the insurance and that type of thing. (At least at my center..) They will make sure everything is in order and all papers are signed and so forth so your ready to be transplanted at the drop of a hat. They also work for you after the transplant.. such as mine does for me, if I need to be put on a med and it's not covered, they fix all that for ya annd get it covered and so on and so forth.
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My first round of testing included meeting with a Financial Coordinator with whom we discussed insurance and things related with money (mostly insurance). It seems to be my only appointment of the day so I wonder why they would have me come out just to meet with this person. Is it a fairly involved meeting?
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The hospital here in LA had us meet with a financial person - took about 20 mins - she just wanted to clarify about the primary (Medicare) and secondary (Blue Shield.)
When Jenna multiple listed it was just a phone call with each financial office.
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The hospital here in LA had us meet with a financial person - took about 20 mins - she just wanted to clarify about the primary (Medicare) and secondary (Blue Shield.)
When Jenna multiple listed it was just a phone call with each financial office.
Did you meet with a Transplant Social Worker? What was that about?
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Hmm, dunnno George.. Maybe your Social Worker does diff stuff since you met with someone already about finances... wish i could help more.
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The social worker evaluated Jenna's emotional and mental status to be sure she would be able to get through the whole process, and also that she would be compliant. She explained the meds protocol so Jenna knew it was a lifelong commitment. Then she spoke to Jenna privately to be sure a transplant was something she wanted, and that she wasn't being pressured by anyone to have it. She also discussed with me the possibility of my being Jenna's donor. She told me that I needed to be there to care for Jenna after transplant - who would take care of me and the rest of the family? I said "I will hire someone" and she seemed content with that answer. As it turned out we weren't a match, as you know.
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Ahh.. Karol, great memory. :) Yes, that's what mine did also.. besides the financial stuff. I forgot.. lol :)
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What about stool cards??? You have to do stool cards! Every Year! I just got my annual stool cards! Oh Joy!
I think I'll go out in the yard and get 3 samples of dog poop and see if they notice. :bandance;
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What about stool cards??? You have to do stool cards! Every Year! I just got my annual stool cards! Oh Joy!
I think I'll go out in the yard and get 3 samples of dog poop and see if they notice. :bandance;
:rofl; :rofl;
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Aye yi yi Rerun, lol :rofl; ok folks, i believe she is serious on this one :urcrazy; ;)
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They will give him stool cards where he will have to scrape his poop and put it on the cards and either "mail" them back or take them in. You have to do it every year! They check for blood and bacteria. I just got mine and they are in the bathroom just waiting. I wanted to wait until I got back form Vegas. Airport security would have had a fit.
I just wonder if I took dog poop if they would know the difference! :sarcasm;
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Never heard of these stool cards, lol... glad I didn't have to do them... eww don't sound fun! :P
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Never heard of these stool cards, lol... glad I didn't have to do them... eww don't sound fun! :P
You never had to do those?? Hmmm maybe because I'm over 40?? Well, you are right they are no fun.
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Thanks for sharing that info Rerun. And then you all wonder why I don't want a transplant. Geezzz
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They will give him stool cards where he will have to scrape his poop and put it on the cards and either "mail" them back or take them in. You have to do it every year! They check for blood and bacteria. I just got mine and they are in the bathroom just waiting. I wanted to wait until I got back form Vegas. Airport security would have had a fit.
I just wonder if I took dog poop if they would know the difference! :sarcasm;
They would probably ask you how often you eat grass, lol, :o
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I have an appointment to meet with a Transplant Social Worker at UNC. Anyone care to shed some light?
I didn't have to meet with a social worker, but I did have a compulsory appointment with the hospital psychiatrist. They just like to ascertain that you are mentally fit to face the challenges of major surgery, I guess.
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Never heard of these stool cards, lol... glad I didn't have to do them... eww don't sound fun! :P
You never had to do those?? Hmmm maybe because I'm over 40?? Well, you are right they are no fun.
I never had to do those either ad it has almost been 7 years post tx. In about 5 years I'll be 40 and still won't do that, I refuse to do that. I'll wait till neighbors dog goes or go to a dog park and get a sample first
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What about stool cards??? You have to do stool cards! Every Year! I just got my annual stool cards! Oh Joy!
Jenna had to also do those stool samples.
Here's why: Guaic Blood Test
A guiac blood test can detect small amounts of hidden (occult) blood in stool, which is impossible to see with the naked eye. Small samples of stool are applied to a test card in the privacy of your home. The card is then mailed or delivered to your doctor or a laboratory for processing.
More examples of tests are listed here - http://cms.clevelandclinic.org/transplant/body.cfm?id=125
Not sure if I sent you this George - it's from where Jenna was 1st evaluated - gives a basic overview - http://www.kidneytransplant.org/article-kidneytransplantevaluationprocess.html - it was mostly done in one day - we came back for the chest xray and EKG on another day as Jenna was exhausted.
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George, as you know I was evaluated at the same center. They seem to schedule appointments when they have a slot, so one time there will be 4 appointments, the next time only 1. The social worker appt. is a breeze. She will just talk to you--make sure you are capable and can handle stuff. She will ask about your support system, etc. Just keep smiling and tell them what they want to hear. It will go well - no worries. Let me know if you need anything. :thumbup;
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Rerun, I have never done this test (and as you know I am well over 40!). I am not going to ask about it--don't want to remind them of one more thing to do! :rofl;
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I had a CT scan (the scan with the contrast dye) to get a better look at the cyst to determine if it is benign or not. Got a call from my coordinator today saying the test was negative and there is nothing to be concerned about. She also said that I only have two more appointments, one with the social worker and one with the surgeon. Am I understanding that there will be no heart stress test, or colonoscopy, or any other such bodily function tests?
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I had a CT scan (the scan with the contrast dye) to get a better look at the cyst to determine if it is benign or not. Got a call from my coordinator today saying the test was negative and there is nothing to be concerned about. She also said that I only have two more appointments, one with the social worker and one with the surgeon. Am I understanding that there will be no heart stress test, or colonoscopy, or any other such bodily function tests?
George, in my experience, these additional tests are usually done on those over 40, but of course, it also depends on the transplant team you use. This time around (at 33), I had to have chest x-ray, lung capacity (or something like that), full abdominal ultrasound, LOTS of bloodwork of course, and meetings with the social worker, team nephrologist, psychiatrist, two surgeons - I was originally trying for live donor, and nurse practitioner. The only thing that really surprised me about the whole thing is that I have never met with my coordinator. Hope all continues to go well for you.
Glad to hear the cyst is nothing to worry about!
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I would imagine they would do a stress test but I could be wrong. When I met the surgeon is when he made the recommendation for the stress test. Its good you are moving along so quickly, good luck :thumbup;
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I am surprised they used contrast dye - did they warn you of the potential additional kidney damage (although maybe you don't have much function left and they don't consider it to be a risk?)
Once you get a new kidney, be VERY cautious! http://ihatedialysis.com/forum/index.php?topic=2008.0
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HI george :yahoo;
Sounds like the ball is rolling in getting you ready for that new kidney!!!!!!!!!!!!!!!!!!!!! Test test test and more test lol. Just wish Dustin would get to the point he is ready. I know I am not him dang gone it I would take it from him ( his disease) if I could and I be the one needing one. I will to continue to lifr you up in my prayers ;)
Lori/Indiana
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Great news George. :cuddle;
I am amazed at the hoops you have to jump through to get on the list there.
Rerun - No poop test here ;D :ausflag;
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Yeah! Glad the results were good. The surgeon may request a stress test. I just got a card in the mail one day saying when my appointment was for the stress test. No one had said anything about it previously. It is strange how inconsistent the different centers seem to be. But, sounds like things are rolling right along. You will be on the "list" before no time.
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Sounds like your on the way. Good job.
As Karol mentioned.... beware.
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Good to hear things are progressing so fast. Good luck. Rose :cuddle;
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No poop test here ;D :ausflag;
Nope, I've never had a poop test either, at least not on a routine basis. When I last went into hospital with norovirus (and they thought I might have CMV) I had to give some samples then, but otherwise none.
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I had a CT scan (the scan with the contrast dye) to get a better look at the cyst to determine if it is benign or not. Got a call from my coordinator today saying the test was negative and there is nothing to be concerned about. She also said that I only have two more appointments, one with the social worker and one with the surgeon. Am I understanding that there will be no heart stress test, or colonoscopy, or any other such bodily function tests?
Yeah on the cyst being negative. Rob didn't have to do a stool sample, but he did have to do a a heart echo and stress test. They like to test every year to make sure his heart is healthy for surgery. They also did an ultrasound on his legs to make sure he has good blood supply. Don't know if they did that because he is a diabetic.
Each hospital has different tests. The hospital also does periodic checks on his dialysis to make sure he is running a full session and not ending short a lot of the time. They would call his Nephrologist to get the updates.
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What about stool cards??? You have to do stool cards! Every Year! I just got my annual stool cards! Oh Joy!
I think I'll go out in the yard and get 3 samples of dog poop and see if they notice. :bandance;
Seems they LOST my stool cards and I have to do them again. I'm so mad! I don't know how they could Lose them!
I didn't know where to put this and it isn't worth a new thread!
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Aye yi yi, isnt it bad enough you had to do it once, now you have to do it again? Hmmmm, maybe you oughta go out in the yard (to get the sample that is) >:D
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I had my last day of evaluation testing yesterday. It consisted of a meeting with the social worker which lasted 15 - 20 min and seemed fairly standard. There were no out of the ordinary questions, just things like what I do wit my time, what are my plans for the future, some questions about feelings, and things of that nature. She simply went down her check list and made the appropriate notes.
There was another 20 minute meeting with a transplant surgeon and an assistant. All that entailed was a discussion of my medical history, current condition and the transplant procedure.
I was told that after the team reviews my case they will release their decision. I should know in a few weeks wheather or not I have made the list at this time.
Now all I need is that kidney.
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:2thumbsup; Keep up the good work and positive attitude!
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I am eagerly waiting the result George! Good luck! :cuddle;
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Wonderful news George. I had my evaluation done at Baptist Hospital in Winston Salem and went through many of the same things you did. I was admitted to something called the "Day Hospital" early in the morning and had all of the tests done in one day. I remember the nurse coming in and telling me that she needed 22 blood samples. After she saw the terror in my eyes she said, "22 tubes..one stick." After that the day was a breeze. When the results came back a week or so later I met with the surgeon. Waiting for the staff meeting and the subsequent letter was the hard part.
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I hope the best for you George.
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I had my evaluation done at Baptist Hospital in Winston Salem and went through many of the same things you did. I was admitted to something called the "Day Hospital" early in the morning and had all of the tests done in one day.
Maybe I should go there, they sound like they want to get it done! As you can see the testing began for me on October 4th. I did not miss any appointments although I did have this last one rescheduled from two weeks ago. And in all actuality I was required to attend an orientation class prior to testing which was probably in August or early September so you can tack that on to my total time count equalling approximately 4 months.
I apologize I don't know your story, have you been transplanted and if so did you have a living donor procedure done in Winston?
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Good luck George. I hope your wait on the list is a short one. :grouphug;
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yes- a short wait for everyone :)
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Good luck!! I hope that things start rolling along smoothly and quickly for you!!
Beth
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Best Wishes!
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Keepin' my fingers crossed for you George!
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Thanks everyone. I am fairly confident that I will be listed, I think I am a perfect candidate (pat on back, fingers crossed). It has become my goal to do as much as I can for people in similar situations. I think we need to act rather than to wait for our number to be called off of some list. It is my hope and dream that by raising awareness for the need of organ and tissue donation (with a focus on living donations) I can influence someone to step up and save a life.
I posted this somewhere else but if you missed it check it out. I think it is really cool. thenead.com (http://thenead.com)
EDITED: Fixed Link URL - Sluff/ Admin
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I think what you're doing is wonderful. It's people like you who have educated people like me about the need for organ donation. I only wish I had been a better match for my mom. We are grateful to my sister for her selflessness and I hope and pray someone like my sister steps up for you. Good luck to you!
Beth
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I had my last day of evaluation testing yesterday.
Now all I need is that kidney.
:clap; I hope your wait is short George. Congratulations on jumping all the hoops. :)
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It has become my goal to do as much as I can for people in similar situations. I think we need to act rather than to wait for our number to be called off of some list. It is my hope and dream that by raising awareness for the need of organ and tissue donation (with a focus on living donations) I can influence someone to step up and save a life.
Great post, George, well said.
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Sorry this is late. But i think its wonderful George .....all the hard work your doing not only to help yourself but everyone else also. :cuddle;
I hope your wait for a kidney is short.
Amanda
xxoo
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I got the good word today...as of December 17 I am officially on the list. Next step is to get multiple listed (Carolina Medical Center).
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Congratulations on being listed!!!! :clap; :clap; :clap;
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Congratulations! That's wonderful news! :2thumbsup;
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I got the good word today...as of December 17 I am officially on the list. Next step is to get multiple listed (Carolina Medical Center).
:2thumbsup; That's my birthday - congrats George! Multiple listing goes much quicker.
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:bandance;:yahoo;:bandance;:yahoo;:bandance; :bandance; :bandance; :yahoo; :yahoo; :yahoo; :bandance; :yahoo; :bandance; :bandance; Dancing for George! Congratulations on getting listed!
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:yahoo; Woo Hoo George!!!!
I am happy you are on the LIST!!!!!!!!!! I will keep you in my prayers that the wait will be a short one!!!!!
:snowman; Lori/Indiana
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Congratulations on making the list and I hope you find many lists to get listed on. :thumbup;
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Good news, George. Do you need Carolina Med Transplant Center phone number? Or any names over there? Just let me know.
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Great news! :yahoo; :yahoo; :yahoo; :yahoo; :yahoo;
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That is such awesome news George :yahoo; , YOU GO BOY :2thumbsup; You've come a long way baby, keep on keepin' on my friend :waving;
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:bandance; :bandance; :bandance; Congrats George! That's awesome!
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Congrats!! I hope you get the call soon!!!
Beth
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Thats great George, I hope you get the call soon!