FRUSTRATED ON INACTIVE LIST

[TaffyTwoshoes27]

I am very frustrated with my Transplant Hospital (I need to vent or get guidance if anyone has a suggestion).

I have completed all of my THIRD two-year re-evaluation with the multiple tests required. The Transplant hospital insisted I get a special Heart Cath procedure because they found a little “blip” in my Nuclear Stress Test (even tho my Cardiologist said everything looked fine to him!). While that test was being scheduled and completed, my status on the Transplant Wait List was changed to “inactive”.

I had the test done. The Cardiologist cleared me. Then I had to have a second mammogram. That was cleared.

Then my darn Coordinator went on vacation. After she returned, she said they are having issues getting approval for transplant from my Insurance carrier (same insurance I’ve had 6 yrs). She said to wait 10 days while they get it figured out.

My Transplant facility says (via the Social Worker) is doing more transplants than in the past. I have been approved for transplant 6.5 yrs!

I am frustrated b/c the Transplant Coordinators, nurses, doctors, etc. do NOT understand how overwhelming it can be to be sitting on pins and needles waiting for “the call”.

I want to get evaluated at Mayo in Jacksonville FL. Unfortunately, I do not have a Transplant partner that can devote a month to help me if I get transplanted in Jax. My Atlanta area transplant will help me, but she cannot go to Jax for a month.

Georgia has one of the longest wait times for organ transplants in the country!

Oh, and unfortunately, the Humana Transplant Coordinator who used to approve the insurance left her job and went to a different division of Humana. I cannot find out who took her place (she was GREAT!). Don’t you hate when you lose great support people in the insurance (or other industry) world? It has happened to me twice.

Anyway, I want OFF the INACTIVE status. This is WRONG in my opinion.

[Bunkin]

They shouldn’t have put you on inactive til they had an answer. They tried that cardiac crap with me. Had to have their cardiologist write me a letter clearing me.!!!

[Eyak1971]

Go public. Venting on this forum is good but make your situation public if you feel comfortable. My situation was in no way similar to yours but when my daughter contacted the local tv station to put my story of needing a transplant on the air, it wasn't too long afterwards before I received a transplant. I waited 5 years before I felt comfortable doing this. I am a very private person but the time has come. Maybe the time has come for you also. Take care and wishing you the best.

[TaffyTwoshoes27 in reply to Eyak1971]

Thank you. Do you feel the transplant was worth it considering all the restrictions? There is a discussion on FB re: staying on dialysis vs. transplant in the PD Dialysis Group.

[Eyak1971 in reply to TaffyTwoshoes27]

It is true on pd I did not have to take medication that caused reactions like hand shakes and bowel troubles. But those generally became less of a problem. But pd although not restrictive during the day became very restrictive at night. At first I have to be honest for the very first months after transplant I wondered if I had made the right choice but now I am glad I chose a transplant. The freedom of just taking pills rather than hooked up to a mechanical device is worth the side affects of medication. But everyone has to determine their own course of action. I like many i had other medical problems to deal with before I could get a transplant. I had to have bypass surgery before I could be approved. If I had a heart attack there would be no way I could have had a transplant. I was also an older patient and was turned down by one center but approved by 2. Certain hospitals want good statistical outcomes and will not take chances that will affect their financial bottom line. I also had a change of insurance while waiting due to job change and had to battle with 2 insurance companies and 1 of the hospitals. But eventually I got the call and started on a new journey right about the time covid hit. So I and the world started a new life with masks and isolation. Would I do it different - no. Life is too short worrying about what I should have done. This forum has given me and others a chance to find support and information on that journey. Take care and know you are not alone.

[RhenDutchess123]

I hear your frustration and am sad you are experiencing this...I think that is why I havent considered a transplant...I have always been a terrible "waiter"...I have been aware of my CKD for 23 years and have now been on nighttime PD for 8 months...and I am responding to it well and feel good..better than I have in years.....so worth it for the small amount of time spent hooking up and unhooking..

As expected, they continue to ask if I want to get on the transplant list and I ask myself why would I want to...It seems to me I would just be trading one set of problems for another one....and I dont know that my survival rate would be that much longer ....If I only have 5 to 7 years years to live ( could be longer)...I dont want to spend if being tested and put on lists and constantly waiting for the "call"..I want to spend that time with my Husband and Children and Grandbabies...making memories and giving thanks for each day I wake up...Transplant to me sounds like a Rat Race

[LisaSnow in reply to RhenDutchess123]

In some cases yes transplantation of solid organs can introduce new problems. On the population level studies found over and over again that transplant is superior to dialysis in quality of life and life expectancy though. Everyone is different so needs are different too. I would consider both options carefully together with your healthcare provider.

[RhenDutchess123 in reply to LisaSnow]

Thankyou...I have...and I continue to do so

[TaffyTwoshoes27 in reply to RhenDutchess123]

Great response. Thank you! Hug those babies tightly! 😀

[RhenDutchess123 in reply to TaffyTwoshoes27]

I hope you get some answers soon..I dont understand the moving you on and off the list...You are in Kidney Failure whether you improve or continue to decline...and while I understand they want the best outcome for the Surgery, making you wait...while your Health declines... is not going to improve that.

You have done all they ask. .spent years doing the testing and waiting for results..You have waited patiently on the list. Surely they cant be surprised that your other Organs have suffered in the meantime....You should be kept on the list and as soon as they have a Kidney that matches you the best...it should be offered to you

[TaffyTwoshoes27 in reply to RhenDutchess123]

I agree. The need in GA and AL is high and therefore a long wait. Some Nephrologists have said 10 yrs on dialysis for an O+ blood type. That’s a long time and FIVE re-evaluations with a battery of tests (which cause more stress — which they have proven isn’t health). And, I’m not getting any younger!

[RhenDutchess123 in reply to TaffyTwoshoes27]

There just are no simple answers is there...So sorry for your stress and uncertainty...How are you feeling ?..is your PD still working for you ?

[TaffyTwoshoes27 in reply to RhenDutchess123]

Yes, it is still working divine. I'm pretty healthy and keep my labs steady.

I sometimes think I'll just stay on dialysis til I croak!

With Covid keeping me indoors and alone, and the Transplant Hospital jerking my chain, it is not a happy time. I have list interest in so many things!

I have found a new psychologist to talk to via telehealth. It starts in a week. Maybe I can get my mental state straightened out!!

Thanks for replying! Hope you are well!

[horsie63 in reply to RhenDutchess123]

Is PD a long term solution? I thought I read that it's good for maybe 8 years? as your peritoneal breaks down over time. I'm 58 and will turn 59 in Dec 2022. I've been referred but haven't gotten any farther than that. My eGFR is 16-17 and I'd like a preemptive transplant rather than go through dialysis but based on the waiting game it may well be inevitable.

[TaffyTwoshoes27 in reply to horsie63]

No chance to get a live donor via family or friends? Allegedly, Medicare will not cover the expenses of PD, etc., until you are at 15 GFR. I’d wait as long as you are feeling ok. I’ve seen ppl write on here that they had an 8 GFR, still working and NOT on dialysis. I looked back at my old labs. My Neph talked me into getting my catheter implanted prior to going on PD when I was at 13 GFR. Knowing what I know now, I would have waited.

The Neph knew that I trusted him, but in reality, the Neph was unable to really start raking in the money on me from Medicare until I got on PD b/c he was the only doctor in charge of the dialysis clinic I was assigned to, and I had to (after starting PD) get an exam from him (Neph) TWICE a month instead of once, plus the cost of labs from the dialysis clinic, plus Renal Nurse time, etc.

In other words, some of this journey was motivated by money, some by trying to help me.

Transplant evaluation was grueling. Start it now while you are healthy, if you can. If your BMI is too high now, they’ll make you lose weight before you can be accepted to the Wait List.

I was on PD 6 yrs. and on the Wait List 7 yrs.

[horsie63 in reply to TaffyTwoshoes27]

No my BMI is only 19 so it's not too high. I'm rather small at 4'9" and 92 lbs. I agree on the waiting as long as I feel fine, which I do, and it's a money train for these people. If you want/need a transplant they have you over the barrel as there are only so many to go around.

None of my family would qualify and since I live in a rural area my list of "friends" is small. I don't attend church, just go to work, go home. I live on a 40 acre farm so there's lots to do. If I get further along I'll put out word here at work and maybe someone will step up, I'm satisfied with getting a deceased donor though. I'm a good 6 years from retirement age and I am hoping to work at least til I'm 70 or more.

[TaffyTwoshoes27 in reply to horsie63]

I hope you have good insurance too! On Medicare, I’ve had to pay over $2,000 in less than 6 mos. as my share of the bills. Save your money. Call your TC or ask your Neph if the TC puts dialysis ppl first for transplant over a person who is not yet on dialysis. It makes sense that they would give a deceased kidney to someone who has been on dialysis and not someone who is healthy enough to stay off dialysis.

You will NOT be called for a kidney until the TC evaluates you. Be proactive and do research on NKF.org, AKF.org, AAKP.org, etc., while you’re waiting. Do research on the TC about their success rates in organ transplants. Those nos. are available.

I was not good at asking ppl about donating. I posted on FB that I had kidney disease, on dialysis and on the wait list. Most of my FB friends are from High School and in Orlando. They were sympathetic, but no one stepped forward.

Get on some lists. AAKP.org and RSN.org are two good ones because they have conferences, have a magazine, good info. My State, Georgia, has a Kidney Foundation (GKF.org). They helped me financially while I was on dialysis to get some dental work done that I could not afford and then helped with several financial things following the transplant. Get a list of these organizations and find out what you will qualify for (unless you’re rich).

Find out from your health insurance company what services you will be afforded. Ask about mental health coverage. Kidney disease/dialysis/transplant causes mental health issues. Keep busy doing your due diligence. Talk to a Social worker or counselor! It helps.

The “not knowing” is what causes some anxiety and depression.

Hang in there!!!

[horsie63 in reply to TaffyTwoshoes27]

At this time I'm still working and through work I have Aetna insurance. The problem I have run into is they will only cover transplants at what they call "Institutes of Excellence" . The center closest to me is NOT one of those so I picked the next on which is 3 hours away. There's also no dialysis centers nearby that do PD, closest is in Joplin which is an hour away. I live in an area that has more cows than people.

[Hidden]

Hey Girl ,I am sorry for all you have to go through and have a couple of suggestions. After working in the insurance industry, I know what shits they can be. The first thing you can do is put pressure on the insurance company. They are the gatekeeper for everything. Continue to ask for a supervisor until you make it up the line to a decision maker. Also, have your social worker put pressure on the transplant team. At least you are getting yourself recognized this way. In this area, we have a nursing organization that would stay with you for the duration. Check into that. It is unfortunate when trusted medical people leave. Don't stress about it. You can develop a relationship with another one. These people are just tools to get you where you want to be. I doubt this person that left thinks about any of the patients she left behind. Unfortunately, you will have to find out who the new person is and continue the process. What happened with your duplex? In my area the eviction process started again. Hang in there and let us know how things go. Sending good thoughts and Karma your way.

[TaffyTwoshoes27 in reply to Hidden]

Hey girl! After all the kerfuffle I made about this issue (which included multiple calls, voice msgs, an email, etc. to the Transplant Care Coordinator Dept of Humana, I reached a nice woman who told me my new Coordinator).

Next thing I knew, I got a letter (accessed thru Hospital Portal) from my Transplant Coordinator saying, in essence, "thank you for completing all tests and you are now on the active wait list...".

However, it said I need to "schedule your renal ultrasound by Oct 1..." The date of the letter: Oct 6. I had the renal ultrasound on 8/20/21; told my Coordinator that fact in an email in September; and here it is again! The transplant hospital drafted the original Order for the test, and they don't keep up with reports they get?

They expect US to follow guidelines, be compliant, stay healthy and patient, but they can be unorganized and not do their jobs! But, if I call them out on it and make a fuss, I get branded a "difficult patient".

I would like to bring to the media the inequity of surrounding States (like Florida) that are in my Region according to OPTN who are not following OPTN guidelines and sharing the available organs! It's not right! A patient in my support group (on PD 8 yrs) goes from Atlanta to Jacksonville FL for evaluation and gets transplanted in one month! Something is wrong with this picture!

Thanks for taking the time to give suggestions. I worked as a paralegal for many years (oddly enuf in Medical Malpractice!) and I am accustom to pressing insurance companies for documents and information! I don't care which company, they all seem unorganized and apathetic!

My opinion: the more these Transplant Facilities jerk us around and cause the patient undue stress, the harder it us to stay healthy, calm and have patience. They have NO idea what we go thru!

[Hidden in reply to TaffyTwoshoes27]

Hey,So you are BACK ON! Great. Imagine if you didn't have the balls to pursue this crap and waited around for the system to work. You are way ahead of the game. Just realize there are times when you have to play the dumb card too. Anyway, I am happy for you. Going to the media may work, but possibly wait until you have your transplant. The powers that be may snap that transplant right back because you pissed them off. I am proud of you. ❤

[TaffyTwoshoes27 in reply to Hidden]

BTW, it took me 16 phone calls over two days to get the renal ultrasound results to my transplant hospital. It was not listed as having been read or even done on the patient portal for the hospital and the report had fallen through the cracks somehow. I don't understand how this stuff happens, and the onerous to straighten it out is put on the patient with a life- threatening, chronic disease (I recently heard that 12 people die a day waiting for a kidney on the kidney waitlist).

I finally hunted down the report and had three people at the hospital fax the results of the ultrasound to my transplant hospital. It was a stressful two days and I had to rest for two days afterwards b/c of the stress!

[Hidden in reply to TaffyTwoshoes27]

Amen sister. That is how it feels to me too! They will ask for a test to be done that is already been done. When I point it out, it still seems to get lost in the shuffle. I find it very hard to be meek and mild when my life is on the line. I noticed the problem got a lot worse when my original coordinator left. My new coordinator seems to be clueless.

All that aside, that’s why I’m going to multi list. So if one facility is dragging their feet, at least I have another facility that may have their act together.

[Darlenia]

Hi! Glad to hear you're back on the active transplant list. My hubby was also placed on the inactive list for six weeks following a heart stent procedure. It happens to many as health conditions pop up, weight fluctuates, etc. Some move repeatedly from active/inactive status several times during their wait. It's only a big problem when one is completely removed from the transplant registry.

With regard to double listing at another transplant center, I would highly encourage you to do so. The larger transplant centers not only have a larger "supply chains", they also provide low cost housing on campus, provide free shuttle service, and more for those who need these services. So give the larger centers a call and set up a consultation. See what they say. In our case, we were double listed at two centers and labs were shared between them. When hubby got the call from the larger, more distant center, we used its on-campus lodging and shuttle service. It was great seeing people there who were taking care of themselves, some did so alone - receiving chemotherapy, rechecking amputations, and more. Where there's a will, there's a way. Because we were proactive and agreed to receiving a kidney with conditions, my hubby only waited a year. Trust you, too, will receive a transplant too.

[curleytop1]

Hello Mhusband27,

Thank you for your comments on hair loss - Curleytop1.

[TaffyTwoshoes27]

You’re welcome, I saw another report on how to treat the hair and scalp on Nick Cannon’s talk show yesterday (11/11/21).

Also, I used that “Toppix” product (there are others on the market that you may want to search). Toppix helps to cover balding spots, receding hairlines, etc. It is touted to last until washed out and impervious to rain, etc. I found it really helped when my hair was thinning to make it not so obvious.

I think it is guaranteed, so maybe it’s worth giving it a try!

[horsie63]

So, based on this and others, are they wanting people to be on dialysis, perhaps til they die and a transplant isn't needed for that person. I understand they want to put the scarce resource in the healthy but this foot dragging is quite annoying and very, very frustrating. I can't even get to the testing part at the TC I "chose" as it's the closest my insurance will pay for.

[TaffyTwoshoes27 in reply to horsie63]

Have you asked your Neph the reason why your evaluation at the TC is taking so long? Are you sure the TC has your name on their list to evaluate? Call them and ask!This is a very confusing part to me: at one time I was told by TC that the “real wait time” starts when you start dialysis (IF YOU DO NOT HAVE YOUR OWN, LIVE DONOR), the rationale being they want dialysis people to have the first opportunity to get the deceased kidneys over someone who is healthy enuf not to be on dialysis.

Some blood types have to wait longer than others. O+ (the most prevalent blood type in U.S.) wait longer b/c so many ppl are in need. O- is a universal donor blood type. The other types: A+, A-, AB+, etc. etc., are harder to find.

I’m not an expert. Find out your blood type and see what other blood types are appropriate for you.

When I first went on PD, I was told the wait time was about 3-4 years, when actuality, it was 8-10.

I talked to someone at UNOS who sent me a list of wait times in different areas of the country (where a person would definitely HAVE to live for 6 months after a transplant and be able to get to the hospital relatively quickly when a kidney was ready for transplant: probably at least within 4-5 hrs. Remarkably, some places have a wait time of only 6-12 MONTHS! [One of my Neph’s patients, just outside Atlanta, got evaluated in Boston. He got the call, booked a flight and got to Boston first! My Neph always said to try and get the first kidney that is removed!]

I was put on PD at 59-1/2 yrs old. Got transplanted at 66-1/2 yrs.

Keep trying to find a donor and read about Paired Donors.

I don’t know how long you can be on PD. The doctor will put you on hemo if PD stops working.

I gotta add that I was getting depressed too. I was worried my health would worsen as I aged and I would not be accepted for transplant. I was ready to stay on PD until I died.

Hang in there. I started praying every night!

[horsie63]

I'm in the middle of nowhere OK. My neph is the closest to me and is an hour drive in Joplin MO. The TC is 3 hours in KC, Kansas. He is not affiliated and once he sent off my referral, at my request (and I told him where) that was it. I've had two very short calls from them and have called them several times. First call was to ask some very basic prelim items and the second was to tell me I needed a mammo and pap which I had already scheduled. If they aren't going to keep me posted fine but I have my life to live and need to get other things scheduled. I'd make the TC primary and schedule everything else around them but I'm not going to just sit here and wait. I have an eye appt I need, a crown I need and at the end of Oct I'm going to visit my granddaughter and that I will not reschedule.

I'm not depressed or anxious I'm more angry than anything about the entire process but I have my horses to take care of, my dogs to love on, and a cat or two who likes my lap. I have a job I like very much and plan to continue as long as I can. I don't feel sick, still walk on my treadmill, and eat a healthy diet.