How to Expand Your Support Group before Transplant?

[jd2004]

Dear All,

I just got a letter from my transplant group in Florida telling me I had to increase the size of my support group before I would be able to become active on the list (again).  I have had some trouble trying to get friends and/or family members to commit to being my support companion due to time constraints and interpersonal politics. Has anyone struggled with this issue before? How did you go about solving it?

- JD2004

[MooseMom]

I truly do not understand why these places keep banging on about having to have a "support group".  I mean, if you've had a heart attack and they are going to cut your chest open to do a triple bypass or something, do they ask about your "support group" before they agree to do the surgery?  No, they don't.  So why do they do that to a prospective transplant patient?

So, ask yourself the same question.  If you had just been released from hospital after any kind of major surgery, who do you have to take you to post op checkups?  That's the only time I needed "support".  My husband took me to my appointments, which I could have done myself except for the fact that my center is in a neighbouring state, and I didn't want to chance driving.

You don't need a "group".  All you may need is the help of one person here or another person there.  You don't need someone to make some giant commitment that's going to take up their entire life.

Not once did I need to call ANYONE else for help of any kind.  So, all of this "support group" business is bs in my humble opinion.

[MooseMom]

"Support companion"?  What IS that?  Never heard of it.  LOL!

[Cupcake]

Support person means not only logistical help but emotional help. Those of us who are strong independent type come off as more self sufficient than others. But don't underestimate your friends/acquaintances' willingness to help. You might not want to ask for help, but you might be surprised who steps up. Keep working for that transplant!

[MooseMom]

Cupcake is absolutely right!  Having a friend to talk to if you are feeling overwhelmed is certainly classified as "support"!

And yes, she is also right in pointing out that some of your friends/family might be very honored to be asked for a little bit of support.  I have a neighbor who is very handy with all manner of things, and he is famous in our neighborhood for offering a hand.  He likes staying busy.  He has helped me many times cutting down trees and doing things that I just physically need some help with.  He badly injured his knee skiing earlier this year, and he asked me one time if I might possibly take him to a check up with his doctor.  I was only too happy to help.

Give people a chance, and as Cupcake said, you might be surprised!

[cattlekid]

I agree with MM.  Your center is being ridiculous.  As long as you have someone to take you to your appointments as needed, then that is all that they should be worried about, unless you have other physical reasons for needing extra help to take care of yourself.  I know that doesn't help your situation but maybe if you explain to people that you won't be on them every second but just need them for appearance's sake, then they may be more willing to help out.

[Kathymac2]

If you truly need physical help post surgery and you live alone with no one you can (or want to) ask for help, you could plan to hire a nursing home companion for a week or so post-op. Transportation could be via Uber or a taxi. As long as you have some plan in place to meet your post-op needs you should be good to go 

[MooseMom]

Two other things come to mind:

I get all of my tx meds from my center's mail order pharmacy.  So, I don't need any "support" to get my pills; they just mail them to me.

And, to be frank, IHD has been the best source of "emotional support" for me.  If I got nervous about anything post tx, I could come on here at 3AM and type away.  This community is uncommonly good at holding your hand, talking you down from the edge, and giving good advice with a kind touch.  While I know my husband knows me, he doesn't really know my pred from my tac.  "Support" comes in several guises and can come from all manner of sources.

Good luck!

[Paul]

jd2004 - We are part of your support group, and there are lots of us. We will be here for you if you need advice, comfort, or hugs. We will always be here for you.

Reply to your transplant group and point out that this is the 21st century, not all the people you know are in the same town, there is this new fangled thing called "the Internet" where many people reside. Tell them about this website, and make them aware that all the people in this place are either people who have had a transplant, or people who are on dialysis, or people preparing for dialysis, or carers of one of the above. As a result we are the perfect support group, as we understand better than friends/relatives who have not gone through the kidney thing. And many of us have had a transplant so can advise first hand on what will happen and, more importantly, can be more understanding than anyone else because they have been through what you are about to go through, so  know first hand what you will be feeling.

So tell them, and remember for yourself: We are all part of your support group.

 

[robertscz]

haha, sounds like your center in Florida is the same one that im going to that is giving my donors the runaround.... i swear this whole thing is about one think..... MONEY.   its almost comical when you look at how much dialysis costs weekly, the testing just to get on the list, the testing that the donors do, ect.  an absolute joke if you ask me

[iolaire]

its almost comical …., the testing just to get on the list, the testing that the donors do, ect.  an absolute joke if you ask me

I believe with Aetna (corporate insurance) and Medicare those insurance programs don't pay for all the testing, they get paid a flat price once the transplant takes place.  With my first hospital they billed insurance a few random things but I think most were not supposed to be billed.  With my second center when I was under Medicare they gave me a card to give to the various hospital providers to make sure it was billed under some sort of special code so it was not sent to Medicare.  (I've assume that since I transferred centers just before my transplant I sort of short changed the previous center on their investment in me, but I'm happy I made the move to the more convenient center - its been a HUGE help timewise to be able to stop by all the specialists on the way to work.)

Assume what I think I know is fact then they are modivated to complete transplants not do testing.  But there are other considerations like how each transplant will affect their transplant facility ratings.  I could see if they are having a hard time maintaing quality ratings then they might be extra strict trying to do only lower risk transplants. 

I wounder how your two facilites are rated?  I don't know if this is the offical site but it has the ratings: https://www.srtr.org/transplant-centers/?&organ=liver&recipientType=adult&sort=volume

[robertscz]

its almost comical …., the testing just to get on the list, the testing that the donors do, ect.  an absolute joke if you ask me

I believe with Aetna (corporate insurance) and Medicare those insurance programs don't pay for all the testing, they get paid a flat price once the transplant takes place.  With my first hospital they billed insurance a few random things but I think most were not supposed to be billed.  With my second center when I was under Medicare they gave me a card to give to the various hospital providers to make sure it was billed under some sort of special code so it was not sent to Medicare.  (I've assume that since I transferred centers just before my transplant I sort of short changed the previous center on their investment in me, but I'm happy I made the move to the more convenient center - its been a HUGE help timewise to be able to stop by all the specialists on the way to work.)

Assume what I think I know is fact then they are modivated to complete transplants not do testing.  But there are other considerations like how each transplant will affect their transplant facility ratings.  I could see if they are having a hard time maintaing quality ratings then they might be extra strict trying to do only lower risk transplants. 

I wounder how your two facilites are rated?  I don't know if this is the offical site but it has the ratings: https://www.srtr.org/transplant-centers/?&organ=liver&recipientType=adult&sort=volume

both are rated extremely high, tampa is slightly under cleveland clinic.  both over 200 transplants/year.  when i had a donor in tampa, the drs there said they do about 50 living donor transplants/yr which is UNDER the national average for percent of living donors from a particular hospital.   could it be possible that their numbers are TOO GOOD and they dont want to risk having them drop a bit?  i dunno, its just a huge cluster thats for certain

[Mr Ken]

Dear All,

I just got a letter from my transplant group in Florida telling me I had to increase the size of my support group before I would be able to become active on the list (again).  I have had some trouble trying to get friends and/or family members to commit to being my support companion due to time constraints and interpersonal politics. Has anyone struggled with this issue before? How did you go about solving it?

- JD2004

Send the letter back telling them to shove it...... These transplant centers do this as a means to thin the crowd out and make themselves look good.

[Simon Dog]

I am surprised by the crap transplant centers are putting people through.

My center knew I was married, but did not demand my wife attend the meetings.  I did list two people who could give me rides, but that was about it, and they required some cardiac test but nothing like dental, etc. and no extra requirements to be listed.  When I signed up they contacted my regular neph who was vacationing in the Bahamas and asked him if he would approve me being listed, and what he thought of me as a candidate.  He gave his clearance and that was it.

I requested "inactive" status after I had a hip job, but getting re-activated was as simple as sending an email and waiting for the weekly transplant committee meeting to approve the request.

After I was home for a couple of days, my wife had to travel for a few days (business).  My brother came over to help clean up the dog accidents and do grocery shopping, and the xplant center arranged for a visiting nurse - standard for all patients.  But, my wife is an RN so I asked to be discharged from the VN service once she returned.   And (seriously) the Chinese family across the street offered to bring me fish heads and rice.  I accepted the rice.

[Mr Ken]

I am surprised by the crap transplant centers are putting people through.

Huh huh huh...... My local transplant center will not accept anything but a unpaid person, no medical transport, no cab, no uber, to take you in for the doctor appointments. Social support must be natural unpaid person to assist you if needed.... I refer to the local transplant center staff as Jackasses of the 10th floor. The focus shoudl be coming up with a solution and help people to become normal again with a good working kidney but that is not how they play the game. They look for reason not to help you get on the transplant list. Very true........

[Mr Ken]

; I have had some trouble trying to get friends and/or family members to commit to being my support companion due to time constraints and interpersonal politics. Has anyone struggled with this issue before? How did you go about solving it?

- JD2004

Dear JD2004:

Oh you shouldn't have.... I am so full of opinions on this one even a devils ears are burning........ You hit the nail on the head about depending on someone who does not live with you as a caregiver...... Truth be told many people cannot be counted on to come through........ A true caring person could always make some time to help out.......

I approached a cousin who was part of the extended family.. Really did not talk to him that much but I am in a situation he was really the only person I have......... The transplant center will not accept paid agencies as home aid caregivers..... I called him on the telephone talked to him at length detailing what was going on and pat of the process including SIGNING OF A CARE GIVER AGREEMENT. Now he said that is a lot to take in and he has to talk with his wife, Rita, about it and He will get back to me in a few days. Few days later he calls and said they would be willing to be caregivers for this. He gives one big BS spiel about family helps family blah blah blah... YEA RIGHT! I told I would get him the caregiver agreement and I would need it back soon because there are other people I need to talk with... I sent it to him and long story short he decided he did not fell comfortable in signing.......... He said we cannot help you..... I was livid... First it took him almost an entire month to have balls and tell his final answer. At this pointed I had already contacted the transplant center and told that I have someone willing to help out........ I in turn sent him a two page letter with a parting wish:

"You and your family at ** Oakwood Common can go to hell with hopes of serious medical conditions and no remedy.  Do not even say anything to me if you see me anywhere. I will give you the finger back. I have been very patient with you and forthcoming to you with my personal medical issue. Up to eight weeks for some assistance that is not asking much and that care giver agreement with only five points, only 2.5 points you had to be concerned about, was very basic.  You then twist things around with lack of understanding based on a risk of lawsuit that one would have to prove gross negligence to begin with. ....."

My patients with people has become quite short because you ending up screwing yourself with your goals that you set. That is being very nice compared to what I really think.......

Ken

[Mr Ken]

If you truly need physical help post surgery and you live alone with no one you can (or want to) ask for help, you could plan to hire a nursing home companion for a week or so post-op. Transportation could be via Uber or a taxi. As long as you have some plan in place to meet your post-op needs you should be good to go

Transplant centers I approach will not accept that. They want to see a natural support person not a hired agency..

[Simon Dog]

Funny thing - my xplant center asked for the names of two people who could give me rides.  I mentioned it to these listed people after I filled out the form.  They were never contacted or asked to verify they could give me rides (though one did).  Caregiver agreement ... never heard of such a thing at an xplant center.

Nobody objected to Uber for post-TX appointments (only had to use it once).   No complaints when wife left town for a few days about 5 days after discharge - they just send me a visiting nurse for the duration of her absence.  In other words, my xplant center treated me like an adult.

[Mr Ken]

Funny thing - my xplant center asked for the names of two people who could give me rides.  I mentioned it to these listed people after I filled out the form.  They were never contacted or asked to verify they could give me rides (though one did).  Caregiver agreement ... never heard of such a thing at an xplant center.

Nobody object to Uber for post-TX appointments (only had to use it once).   No complaints when wife left town for a few days about 5 days after discharge - they just send me a visiting nurse for the duration of her absence.  In other words, my xplant center treated me like an adult.

I am glad you had a decent experience. Unfortunately the Erie County Medical Center of Buffalo NY Kidney Transplant center are made up of Jackasses of the Tenth Floor. ECMC has a caregiver agreement that has to be signed by two people. They will not accept paid hired help for anything...... Including visiting nurses Their way of thinning the people down...... It should not matter how your butt gets to the appointment as long as it is there for the appointment.  I am not the type to play games like this....... They rub me the wrong way.  Take your kidneys and shove them........

[Simon Dog]

The coordinator at my center asked if I had reliable rides for the appointments.   I said "Generally my wife or myself once I can drive, but if there is a problem I could afford Uber and would be there".  This was accepted.

[iolaire]

I said "Generally my wife or myself once I can drive, but if there is a problem I could afford Uber and would be there".  This was accepted.

I do think it’s different for people with no one at home. The center wants to insure that if you are paralyzed in bed that someone will know and get to the hospital. Uber and all that is fine but there could be many situations where someone could not get emergency attention for themselves.

Transplant centers would risk their entire transplant program if they had patients die for lack of someone knowing that they need help.

That being said I don’t know why they don’t accept paid staff or nurse monitoring.

[Mr Ken]

Transplant centers would risk their entire transplant program if they had patients die for lack of someone knowing that they need help.

That being said I don’t know why they don’t accept paid staff or nurse monitoring.

There are ways to make it work just fine. Being close minded puts a patient at far more risk.......