I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: rookiegirl on November 12, 2007, 05:25:13 PM
-
Hi Everyone,
I started PD back on 10/22/07. I sent my application end of Sept. 07. I made a phone call to the transplant people to see if they received my papers. They have my forms but was told it would probably be Nov by the time they process the forms. November has come and still no news.
How long did it take for you guys to get on the transplant list? I'm starting to worry. I know that I would be a great candidate, but still not on the list. Should I keep bugging them? I saw my Dr. last week and he knows they have my papers because they sent him an email to confirm they received it.
-
Have you done all the testing first?
After all my required tests were done, I was put on the list within weeks... love my transplant team, they are on the ball.
-
No testing yet. I was told I would have to meet with the coordinator and the surgeon. I'm suppose to atten some class before any testing can be done. Is this right?
-
You have a bunch of tests. Then you meet your "transplant team". This is the coordinator, financial person, social worker, surgeon, etc.
People think you just go "sign-up" for a transplant! You don't. It is like an Olympic competition!
Good Luck
By the way.... if you smoke you won't be on the list.
-
So once they receive your application, shouldn't they coordinate for me to do some testing? I haven't even got that far. Should I continue to call and bug them? I don't want to be a nag.
-
If you have a good relationship with your nephrologist, maybe he can help give them a nudge. I was told at my center that the waiting time to get a eval was 1 year. My nephrologist was a great help in getting me listed. Good Luck to you!
-
You can continue to call... however, your in the very begining... its a long road.
If you're going to call to bug them, make sure you let them know you have sent your paperwork and you are trying to find out when the classes and meetings and appts with the transplant dr's and team will be scheduled.
You cannot even begin testing until you meet with your transplant doctors, because they are the one's who say what tests need to be done.. and for every patient it's different. If you do a test and something is wrong, you may have to see another dr and do another test, and so on and so on.. until your cleared by every test. Once you took your classes (which they do first) and met with everyone (which they also do first) and are good to go with them, and passed all your tests, your cleared and placed on the list.
Good luck.
-
I agree with having a good relationship with your nephrologist. When my mom's kidneys started to get seriously low, he called the nearest hospital that did transplants and told them to process her info ASAP. She was there in a week and on the list as soon as she finished all the testing. She was in the hospital for 3 days. It turned out that she has high antibodies and the hospital she went to initially doesn't do positive crossmatch transplants so she is going to Mayo Clinic. After testing my husband, my sister, and myself my sister is the best match and will donate to her. They're going this week to have my sister evaluated to donate to her. This process is long and drawn out but can be made a little easier if your nephrologist can light a fire under some butts....good luck!!!
Beth
-
How long did it take for you guys to get on the transplant list? I'm starting to worry. I know that I would be a great candidate, but still not on the list. Should I keep bugging them? I saw my Dr. last week and he knows they have my papers because they sent him an email to confirm they received it.
It took me a number of months to get listed. The process can be frustrating because most of us want to make it happen quickly and get off dialysis as soon as possible. I started dialysis in January of 1999 but wasn't listed until the following August. The listing process at UCLA was a sequence of steps. First was a group meeting explaining transplantation in a broad sense before a large audience. Step two was the evaluation meeting and examination with the head of the renal transplant department, another nephrologist, and a few others. At that meeting and exam they are looking at a patient's eligibility for transplant and clearly explaining the risks and benefits of transplantation. After that there was blood work and required testing for things like tuberculosis and a treadmill cardiac stress test. Dental health is very important prior to transplant and most patients need to get some out of the way. After that I waited impatiently for a couple of months and one day a letter arrived stating that I had been placed on the list.
-
I would continue to call and bug the crap out of them until they give me the info i want or need :P Sometimes having a relationship with your neph does not help, i remember my neph asking ME if i was on the list, WTF? :urcrazy; 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 >:(
-
The part that took the longest for me was getting my insurance to approve the evaluation. They had to draw up a contract that they and the hospital agreed on. It took about 2 months to get the insurance approval before I could begin testing. My tests were scheduled all in one day and about a month later, I was on the list. My Neph was no help at all. He was always asking me if I was on the list yet. :urcrazy;
Good luck and hopefully they will contact you soon.
-
The first thing I had was an orientation at the transplant center. Then they started scheduling all the tests ---months and months of tests. But, it is all on their schedule and they run the show. I like all my co-ordinators and doctors. I know they are all working for me, but it can be frustrating waiting for the next test. And then you have to repeat some of the tests once a year to stay currant on the list. There are a few who seem to get through the tests quick. Most take 6 to 9 months. Good luck and the key word is "compliant"---keep telling them what they want to hear! Keep making calls so they CAN'T forget you!
-
why does it take so long to get on the list ? when i went to the hospital to gey my evaluation done, it took awhile but i had it done all in one day. in fact the coordinator told me she was listing me before i left the hospital. is that not the way it is supposed to be ? maybe it's because i was double listed at two hospitals and they share the medical records.
-
You know with the list taking so long to go through you would think they could get the ball rolling a little sooner than they do. They could always remove someone if they changed their mind or became ineligible.
-
You know with the list taking so long to go through you would think they could get the ball rolling a little sooner than they do. They could always remove someone if they changed their mind or became ineligible.
Become head of UNOS.. change some things. :clap;
-
You know with the list taking so long to go through you would think they could get the ball rolling a little sooner than they do. They could always remove someone if they changed their mind or became ineligible.
Become head of UNOS.. change some things. :clap;
Hell girl, if I had my way and I was head of UNOS I would make it a mandatory rule that all IHD members get transplants first. :lol;
-
Sluff, what do we have to do to make you the one in charge? Why not "Sluff for President"?
It did take a lot less time to be approved at the second center. They do share all medical info, center to center, so it was basically meeting surgeons, social worker, financial co-ordinator. It is just that initial work up that takes awhile. I do think they need to make sure you are in the best possible condition before they put a new kidney in you. How they explained it to me was that the tests were done,so if they did discover a problem, they could resolve it before transplanting. Why aren't the standards the same everywhere? Just stupid!
-
Because the total number of kidneys available for transplant has been stagnant in most industrialized nations since the mid 1990s, while the number of people waiting for a transplant has been climbing exponentially, there is a constantly lengthening waiting time for a new kidney. I strongly suspect that many transplant centers are trying to minimize the apparent size of this problem by a variety of illegitimate devices, such as denying people a spot on the waiting list for reasons which are medically indefensible, such as imagining that patients will be non-compliant with the simple regimen of pill taking required for a transplant because they could not cope with the impossible regimen of fluid restriction during dialysis. The same is true when patients are excluded because of age, since recent studies show older patients do quite well with transplants, especially since the strength of their immune system is lower than in younger patients. Excluding people because they are overweight is another unfair criterion, since this makes little difference to the difficulty of the surgery or the success of the transplant.
Creating unnecessary bureaucratic delays before people even get on the transplant list is yet another cheap trick to make the transplant waiting time seem shorter than it really is.
-
Sluff, what do we have to do to make you the one in charge? Why not "Sluff for President"?
He's got my vote :clap;
-
GREAT NEWS!!! :yahoo;. I received a letter today. They finally have me scheduled to attend a transplant session on January 8th. According to the letter, I will meet the transplant team to discuss the priliminary. I'm so excited. :bandance;. I hope everything goes well.
-
Great news. First step in the process. Hope it all goes well and FAST!!
-
Good luck Rookiegirl, that is great news, keep us posted ok :2thumbsup;
-
GREAT NEWS!!! :yahoo;. I received a letter today. They finally have me scheduled to attend a transplant session on January 8th. According to the letter, I will meet the transplant team to discuss the priliminary. I'm so excited. :bandance;. I hope everything goes well.
Outstanding News !!!! Rookiegirl. :beer1;
-
You have a bunch of tests. Then you meet your "transplant team". This is the coordinator, financial person, social worker, surgeon, etc.
People think you just go "sign-up" for a transplant! You don't. It is like an Olympic competition!
Good Luck
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? :thx;
-
I would continue to call and bug the crap out of them until they give me the info i want or need :P Sometimes having a relationship with your neph does not help, i remember my neph asking ME if i was on the list, WTF? :urcrazy; 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.
-
I would continue to call and bug the crap out of them until they give me the info i want or need :P Sometimes having a relationship with your neph does not help, i remember my neph asking ME if i was on the list, WTF? :urcrazy; 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?
-
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
-
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? :thx;
I wouldnt say "you wont be on the list", they ask you to stop smoking.
-
I would continue to call and bug the crap out of them until they give me the info i want or need :P Sometimes having a relationship with your neph does not help, i remember my neph asking ME if i was on the list, WTF? :urcrazy; 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 :banghead;
-
I would continue to call and bug the crap out of them until they give me the info i want or need :P Sometimes having a relationship with your neph does not help, i remember my neph asking ME if i was on the list, WTF? :urcrazy; 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 :banghead;
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 ;D
-
Wow, that is great Charee, sounds like your on your way girlfriend, keep up the great work :2thumbsup; Are you on PD? i am sorry i cant remember :P 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 ::)
-
Wow, that is great Charee, sounds like your on your way girlfriend, keep up the great work :2thumbsup; Are you on PD? i am sorry i cant remember :P 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 :P 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 :cuddle;
-
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 :2thumbsup;
-
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,
-
Good info, thanks.
Hope all goes well!
-
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.
-
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.
-
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!
-
Great News! :yahoo; 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. :bandance; :bandance;
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.
:thx;
RG
-
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!
-
Good luck Rookiegirl. :2thumbsup;
-
:bandance; Oh Boy! I hope all goes well! Please let us know how it goes! :bandance;
-
I'm so glad you got that straightened out! Hope you sail through your next appts and are listed very soon!
-
Rookiegirl :yahoo; Please keep us updated. We are pulling for you.
-
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 :urcrazy; 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.
-
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!
-
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!
-
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 :yahoo; 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.
-
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.
-
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.
-
rookiegirl, all the best to you and I hope your evaluation goes without a hitch. :cuddle;
-
:thumbup; Good luck - please let us know how it goes!
-
Good luck and go for it!
-
Good luck, you'll do fine! As for the meds, if you really must take them, I'd do it and suffer for a little while with nausea. What's a little nausea compared to a transplant and no dialysis?! Take some Tums or something if you need to.
-
Well, I'm finally back home. It took forever, but it was all worth it I hope. We check-in @ 7am and I was discharge @ 6pm. Almost 12hrs. Here's what happen:
~Waited in the lobby for 1hr. before they check me in.
~Waited in the lobby again for 30mins. for a transporter to take me to my room.
~While in my room, nurse took 20 tubes of blood (OMG!), blood pressure (low than normal), heart rhythm.
~Waited in the room for 1hr. Transporter took me down.
~Had chest x-ray and C.T. scan
~Waited in a holding room for 30mins. prior to going back to my room.
~Waited in my room for almost 4hrs. Transporter took me down.
~Had heart ultrasound and heart stress test. Walk and eventually ran on the threadmill for 4-5 mins. Jumped quickly back in the bed so they can do ultrasound of my heart while my pulse was over 155.
~Waited in a holding room for 30mins.
~Had abdomen ultrasound of my kidneys, lungs, spleen, bladder, abdominal muscle/tissues. The lady let me see my catheter tube. It was interesting. Now I understand why it hurt so bad when I drain fluid out at the end. My catheter sucks again my peritoneal wall. Very interesting.
~Waited in a holding room for another 30mins. As I was waiting for a transporter to take me back to my room, there was an elderly lady on a stretcher beside me. She grabbed my hand and she wanted me to feel her heart. I couldn't reach her chest. A nurse came by to talk to the elderly lady. Afterwards, she quietly lean on me to tell me that the lady has Mrsa. So the nurse wheeled me to the bathroom so I can wash my hands. I told the nurse that I'm a dialysis patient. I was so scared. I washed my hands in hot water and used Purell. I pray to God I did good enough washing to not catch it. I can't understand why they would put the patients that close together. You never know if that person is contagious. I'm not angry at the elderly lady. She was so sweet. I'm angry with the hospital staff. They should be more cautious than that.
~Transported me back to my room. Waited for 2hrs. to see if the Dr. need to see me before my discharge. After waiting for that long, nurse came in and said the Dr. didn't need to see me. Finally I was discharged.
Just a reminder, I had nothing to eat or drink since 6pm the night before. I was so hungry and soooo thirsty. I was really starting to feel nauseated and shaking. But, I didn't want to complain because I know this test is all worth it. I really hope they don't find anything with me that would not qualify me for a transplant because then all of what my husband and I did today would be for nothing. Speaking of husband, he was such a trooper. He too didn't eat or drink. He waited patiently through all of it.
Now, I'm waiting for results. I hope they don't take too long to let me know. Thank you for allowing me to share. I hope this was informative to those waiting for a Transplant Work-up.
-
Sounds like a very long day, but you made it through.
I hope all your tests provide the results you need to be on the transplant list.
Very strange about the little old lady with a contageous disease. You would think more care would be taken with her
with regards to the possiblility of spreading it to others. Best of luck to you.
-
rookiegirl, you poor thing. Isn't it terrible that they leave you parked in places for so long. I'd be raising hell about them leaving that lady there that had MRSA, good Lord, what were they thinking. :banghead; I hope you hear something soon. I'd call the transplant coordinator at the end of next week and ask her if there is anything else that you need to have done. Have a wonderful weekend and tell your husband that I think he is a hell-of-a-guy for staying with you the whole time. There is nothing worse then waiting. :cuddle;
-
Whew! It sounds like a very tough day! When Jenna did all of those appointments it took most of the day, but it was outpatient so we went to lunch in between. Then at the end of the day they said it was an hour wait for the xray, so I said no thanks, we will come back another day, which we did. You hubby is a cool guy in my book!
-
FINALLY!!!! I received a phone call this afternoon from the transplant coordinator. I am officially ACTIVE on the Transplant List. :yahoo; :yahoo; :yahoo; :bandance; :bandance; :bandance;.
I'm so excited. All the fear and all the "what ifs" are gone for now. I know this is a whole new ball game for me. But after waiting 7 months, and going through all the obstacles on getting there, it finally came. Thank God.
-
:clap; :2thumbsup; :yahoo; :clap; :2thumbsup; :yahoo;
That's great! Congrats!
-
rookiegirl :yahoo; That's wonderful news. Hope you get that call fast. :bandance;
-
Congrats . There's one big hurdle down. Hope things continue to go well for you.
-
Wow! Great news! :2thumbsup; :clap;
-
That' great news. I hope you get the call soon :grouphug;
-
Yay RookieGirl!!! You did it!!!! BTW, I'm so impressed with your husband not eating/drinking along with you during your long long day of tests-- what a support!
-
Wonderful news, Rookiegirl! I remember getting my blood drawn. I think they took either 12 or 16 tubes of blood and I thought that was a lot! But 20????? Did you feel woozy afterwards?
Congrats! :beer1;
-
YAY!!! Yeah, I remember getting my blood drawn too.... 17 vials .... no fun... sure would be nice if they offered us some orange juice or a cookie afterwards huh :rofl;