I got a call last week from the transplant center...They want me to meet with the team. Golly, I was so excited until the nurse started talking.... She starts with, you turned 70.... we need to update your record. Then she starts in about my weight. Well, truly, I have not been good because I was depressed and thought I had two more years to go before I would be in line. That's what they told me three years ago. And now she mentions, we are also going to look at your body shape....which is just swell. I am very tummy heavy and have always been. Three years ago, they gave me in writing a BMI I had to stay at. Well, I was over it, not a lot, but enough..... Now she is saying they want two more points lower, which is totally unfair. However, I am a fighter, and I am losing the weight. I am eating only 900 to 1000 calories a day. I have lost 8 pounds so far and have 12 more to go. I have a month to do so before I actually meet with the surgeon and team. Anyone been through this and have any encouraging words. I truly think they are looking to disqualify me. I hate the games they play.
Talk about pressure: I got a call last week... - Kidney Dialysis
Talk about pressure
oh gods yes… not eight but they are having me do physical therapy before they will reactivate me. So now I’m doing 6 weeks of PT because of balance issues.
And yes I believe they try and screen everyone out.
oh jeepers, that is crazy. So if you do the PT you are back on and high on the list?
As long as nothing else happens or they find another road block.
Congratulations on your weight loss. Just do your best to prepare. You have always been so sharp and knowledgeable about your own journey. I’m sure this will help in that interview too. We are all here to support you.
Thank you so much
Backing up Snowpeak's comment 100%.Wishing you all the best success
Thanks so much. The support is very welcome.
You have been one of my guiding lights since I found this website. You have been so open and real about everything, you share your knowledge with everyone, even when struggling to adjust to dialysis. I continually have doctors wanting me to lose weight, making comments about how much better I'd feel, or easier to exercise. You fight for those 12 pounds and get your transplant. I was told when i got my liver, no one expected me to live more than 2 years. At 4yrs post my kidney numbers fell to 15. They wanted me to go on dialysis, which I declined. I immediately began a very strict diet for my kidney. 3months later I was 30 lbs lighter and my gfr and creatinine stabilized, 30 gfr and around 1.7 creatnine. That stopped everyone in their tracks. And on my way out of that office, I walked with my head up. Not looking down in shame. Don't let anyone shame you for who you are.
Thankyou for your kind words. the last thing I have ever been about being a person of size is shameful. I have spent many years of correcting medical people to stop looking at statistics and look at the human. But alas, the medical world does not change easily. I actually had my Neph change a note in documentation that my kidney disease was from being obese. Far from the truth when the real reason was from a past doctor not listening to me and prescribing ibuprofen for three years,
I truly think the Medical Center is looking to disqualify me after I fought so hard to be instated. They turned me down the first time and I fought for that, and they then had to reinstate my time.
They are the second to lowest number of transplants in my state which for their size is ridiculous. I have heard so many horror stories of how they treat people. But for my own reasons, I am going to fight for my transplant there.
I was told before my transplant that different hospitals have more strict protocols. I didn’t have any issues that would be of concern because I’ve been a small person all my life but I was almost too small when I went in for transplant. Not on purpose but I had lost several pounds. Do you have more than one hospital you can use for transplants? I had two, one two hours away that ended up being the one that called and the one my favorite doctor wanted me to go with. My brother had a donor and his closest hospital denied his donor and they went to the bigger city hospital and they allowed it. Prayers that everything works out for you.
Good luck with your meeting. I'm headed to Mayo Clinic. Finally got sick enough to get an appointment. Hopefully someone will change my tacrolimus to a different immunosuppressive. It's killing
Wishing you much success on meeting the center's goals! They want everything to go smoothly for everyone - centers are on high alert 'cause they don't want to be disciplined or closed down for poor outcomes. Like you, my hubby, too, was closely watched by everyone, including the transplant center, since his weight contributed to his diabetes...which ultimately took his kidneys. He reached his goal weight (while on dialysis) and everyone was ecstatic when that happened. I don't think they see a lot of people motivated enough to do that. I worried that my hubby would go back to old habits after his transplant, but he's been very good about sticking to his new way of life - eating all the right foods, etc. You're really close to your goal weight, Bassetmommer. That's downright awesome. I know you're gonna cross the finish line soon. And I hope everyone richly congratulates you too! And that new kidney makes it's way to you in double quick time.
Thank you so much. As far as transplant centers, its all about the numbers. They do not want the HCAHPS to reflect poor outcomes because that is how CMS.... Medicare and Medicaid pays them. The more successful, the more payments. Screw the patients.
That too. I guess that's why I really advocate for more research for mechanical kidneys, xenotransplants, etc. - where plentiful supply eliminates the pressure. Right now, it is what it is.
You got this, Bassetmommer. It's a big goal, but you're motivated and disciplined and will make it. I wish I had a magic wand to help, but you're a fighter and can do it. It's disgusting that some people in the medical field still have this archaic notion that everyone has to be of the same weight and shape to be "normal." Sendimg prayers, positive thoughts, good wishes, and cheers from the sidelines along with everyone else in this community who loves you.
Oh thank you. The support this group gives is amazing. What positive energy. We could rule the World.
Yes, we can rule eventually: One educated patient at a time. BTW people can tell you what to eat or not eat. I can suggest that you watch your stress because high emotions can disrupt your diet goals. Stay positive and be kind to yourself. Buy yourself something special, go see a fun movie, attend a concert, start a new hobby, play some funky music, get flowers for yourself, etc. Good luck
I know you got this you are strong and I believe when you put your mind to it you do it. I have been inactive on the waitlist so many times my was always due to sickness or when I broke my ankle I almost had a kidney that day the orthopedic doctor said it was fine and the transplant surgeon wanted to do it but. The transplant team said no you have to be able to walk after so I lost that one I could see there point but the other two doctors had my hopes up .
Not tyring to be funny, but you should write a book. I just read your other post. OMG, you are having a time of it. It's a good thing you are as strong and powerful to get through all that you have. I honor your strength.
I haven't been through this so no advice, but you have this. I believe that in the end you will succeed. That's who you are.
Thanks Jodaer. It is the fight of my life.
yes it is and how shameful is that? It just shouldn't be that way.
Hi Bassetmommer, don’t give up, staying healthy also includes a good night sleep, stress can also trick you and make you gain weight, walk around your neighborhood, try not to eat fruits and carbs together, but most importantly, receive all our good wishes, and prayers!, it is extremely rare to disqualify you unless you are not consistent with your Nephrologist’s appointments, missing your medications or your transplant center monthly bloodwork. If they don’t see a change in your lifestyle they will put you on PAUSE, that means that you will not be called if there is a matching donor until you get to a safe BMI. And for the waiting time, they will add as waiting time the time you are in pause. So, cheer up!, you are doing great!, don’t give up! We are all rooting for you! 
Thanks,, They can disqualify anyone for anything they want... what are you, as the patient, going to do about it...Believe me, I am giving them NO reason to disqualify me. Thanks for the encouragement.
As someone who has never had to deal with weight issues, I can only say this: Weight does have influence on how well a transplanted organ will function. If the transplant center says that a certain BMI is required, it's because that's where they've found the most success. I'm all for success.
Secondly, yes. They are trying to disqualify you. They're trying to disqualify me. You have to understand where they are coming from. They will NOT give me a kidney if the next guy looks like he might survive longer with it. And, that's what it boils down to. You want to know why some centers have a better success rate? It's because they were picky SOBs and got the recipients who promised better recoveries. It is their job to make it as hard as possible to get the kidney.
I hate to sound like a downer, but transplant centers HAVE to be that way. If they made it easier, it opens the door to abuse of the system. They don't want to hand a kidney to someone who is a crappy candidate, then have that person die early. It wastes their time, and more importantly, a perfectly good kidney. That just means you and I sit on the list for longer.
Your first sentence said it all.
I know you can do this Bassetmommer!! Of anyone on this site you of all people can do this!! My prayers will keep going up for you. Please consider registering with two centers. One in Dallas, accepted me, but only for Robotic transplant if I have a qualified donor. Or they would accept me for traditional translant if I lost 20 lbs. My local center told me I only had to lose 10 lbs for their traditional transplant list. So now I am trying to get on both. The local center has a shorter wait time, but there is a much higher risk of infection for me there. My son is a potential match at Baylor, but they will not approve him until he meets their lower BMI requirements and now "Lifestyle" changes - as a donor. But at least the two centers have a wide enough difference in criteria that I now qualify for my local center if they accept me. It might be worth looking into a second center for you even if there is a distance to travel. Regardless, I know you will come through with a new kidney!!
Thanks so much. I am trying not to get discouraged. I have dropped to 850 or less calories and have lost NOTHING. I also take a phosphorous binder and multiple drugs that block me up. So I know that is part of the issue. Also, I am not getting any time to get out and do some exercise. I was in a chair either with dialysis or infusions five times this week. 5 times. Ridiculous.
I got my labs back..... they were fabulous. Everything was in range. 8 months and finally. There is no way she can tell me I have to do more dialysis...... NOPE. I think benign so mindful with my diet has helped. So I will stick with it after I see the firing squad. I will up the calories to something more normal, though.
If they disqualify, we are going to the next city, Buffalo. They take everyone. It just will be very inconvenient for my family.
Your family will more than understand. They can be much stronger than you think, and the only thing that is important at this point is for you to get a new kidney, period. So focus on that and if it is Buffalo, it is Buffalo. It might even be a blessing you for you to go there that you are not expecting. You will win this Bassetmommer!
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