Transplant recovery without a care partner

[kickingandscreaming]

I am now on PD and am under pressure to explore Tx.  At my age, it would be a cadaveric kidney from an old or compromised donor (expanded criteria).  My question is: Is it even worth thinking about if I live alone, don't have the money to hire private nurses or home health care people and my friends are too geographically scattered to drop everything and move into my house and take care of me for 8 weeks.

What's a person in my situation to do?  I have read some tx stories on this forum and they are all over the map in terms of post surgical needs.  I live outside of Boston in an area with no public transportation, so clearly I would need help getting to and from appointments (fairly long drive assuming they would all be with the tx team).  Need help shopping.  Maybe doing the basics. Do I need to have live-in help?  Or could I just get the occasional ride and do everything else in minimal mode?

It's hard being essentially alone in the world (or at least feeling that way) and facing all these debilitating procedures.  All these issue, plus the post tx meds, are what keep me from enthusiastically pursuing tx.  Not to mention the kind of kidney I would be eligible for.

[SutureSelf]

I am now on PD and am under pressure to explore Tx.  At my age, it would be a cadaveric kidney from an old or compromised donor (expanded criteria).  My question is: Is it even worth thinking about if I live alone, don't have the money to hire private nurses or home health care people and my friends are too geographically scattered to drop everything and move into my house and take care of me for 8 weeks.

What's a person in my situation to do?  I have read some tx stories on this forum and they are all over the map in terms of post surgical needs.  I live outside of Boston in an area with no public transportation, so clearly I would need help getting to and from appointments (fairly long drive assuming they would all be with the tx team).  Need help shopping.  Maybe doing the basics. Do I need to have live-in help?  Or could I just get the occasional ride and do everything else in minimal mode?

It's hard being essentially alone in the world (or at least feeling that way) and facing all these debilitating procedures.  All these issue, plus the post tx meds, are what keep me from enthusiastically pursuing tx.  Not to mention the kind of kidney I would be eligible for.

Who is pressuring you to explore getting a transplant and why?

I suggest you first determine if truly wanting a transplant, irregardless of logistical concerns.  Then decide which transplant program you would like to sign up with and make an appointment with the program's social worker to discuss your concerns.  Please be honest and open, especially when it comes to potential family members/friends willing to help out post transplant.  That means either coming out to your place and taking you in for labs  and other medical appointments or having you live with them for a while until you are cleared to once again take care  of yourself.   

How much help you'll need will depend on your particular recovery time.  I went out of town for my first transplant and ended up having to stay in hospital for 4 weeks and then in an out patient town house run by the hospital for an additional 2 weeks (at my expense - but reasonable) before going home.  Stayed with my sister for about a week. was given permission to drive and back to work a week after that.

Again, check with the transplant social worker to see what resources/suggestions are available based on your situation.

[kickingandscreaming]

I went out of town for my first transplant and ended up having to stay in hospital for 4 weeks

Can you say more about why you had to stay in patient for 4 weeks?  That's surprising for such a young person. 

I am being pressured by a doctor friend (infectious diseases) who has had lengthy conversations with a Nephrologist at her hospital.  She is convinced that the expanded criteria system works well for old geezers like me (74).  There is also internal pressure.  I realize that PD is a short-term treatment and at some point I will have to transition either to in center hemo (hate it) or HHD (not eligible because no partner and needle phobia) or hospice.  When I bring this up, my Nephro always says I should get listed for an ECD tx.

My guess is that I don't get to speak with the tx social worker until I've already signed up to be listed.  Is that right?

[Fabkiwi06]

I had both an info session and an appointment with the whole transplant team where we discussed all those things before I started getting the tests to get on the list. I met with everyone from the social worker to the dietitian to the actual surgeon. All to make sure that this was the path I wanted to go down.

I'd get in touch with them and see if they have a similar situation. They'd be able to give you answers that are exactly based on your situation.

[SutureSelf]

 Can you say more about why you had to stay in patient for 4 weeks?  That's surprising for such a young person. 

I received a cad transplant that didn't function right away. Ended up being given - at the time - a relatively new medication - OKT3, an  anti-T cell antibody for rejection treatment after conventional therapy had failed.   It was administered over 10 days with progress checked through nuclear scanning.  The head of the transplant program where I went believed in biopsy only as a last resort and worked with the nuclear medicine and radiology depts. to come up with extremely accurate protocols to determine if rejection was being reversed.  In my case, the OKT3 worked.  Can only be given once in a lifetime.

I am being pressured by a doctor friend (infectious diseases) who has had lengthy conversations with a Nephrologist at her hospital.  She is convinced that the expanded criteria system works well for old geezers like me (74).  There is also internal pressure.  I realize that PD is a short-term treatment and at some point I will have to transition either to in center hemo (hate it) or HHD (not eligible because no partner and needle phobia) or hospice.  When I bring this up, my Nephro always says I should get listed for an ECD tx.

My guess is that I don't get to speak with the tx social worker until I've already signed up to be listed.  Is that right?

Most transplant centers will allow for a meeting before signing on.  Call and check.  Do not feel pressured into getting a transplant.  You can do well on PD for 10+ years by making sure not to get infections/peritonitis, and not getting into the habit of using the stronger dwelling solutions.  Be kind to your peritoneum!

[MooseMom]

It's impossible to be listed without first meeting with the tx coordinator/social worker/all of the other people they'll want you to see!

[kickingandscreaming]

You can do well on PD for 10+ years by making sure not to get infections/peritonitis, and not getting into the habit of using the stronger dwelling solutions.  Be kind to your peritoneum!

Which do you consider the "stronger dwelling solutions?" 

I did use 4.25% 2 or 3 times because my legs were swelling up really badly.  Then I had the PET which showed that I am a high-average transporter.  So I was switched to shorter 3-hour dwells (dry overnight) and told to use mostly 2.5%.  So now I use 3 greens and 1 yellow/day and am getting good UF and no swelling.  But I consider 2.5% as high (I'm Type 2 diabetic and just HATE the idea that my only choice is to swim all day in dextrose) even with "just" a 3-hour dwell.  So I'm probably beating up on my peritoneum and it won't last long. 

The worst thing is that before PD I was a very well controlled diabetic by just diet alone (low carb).  Kept my A1c at a very good level without drugs.  Now I'm a mess.  Blood sugar is up, I feel crappy and I'm on my way to being like a beached whale by steadily gaining weight.  So that makes me very unhappy with PD.  I'm going to have to start diabetes drugs and that feels like a personal failure even though it is all the fault of bathing in dextrose all day long.

[SutureSelf]

Which do you consider the "stronger dwelling solutions?" 

I did use 4.25% 2 or 3 times because my legs were swelling up really badly.  Then I had the PET which showed that I am a high-average transporter.  So I was switched to shorter 3-hour dwells (dry overnight) and told to use mostly 2.5%.  So now I use 3 greens and 1 yellow/day and am getting good UF and no swelling.  But I consider 2.5% as high (I'm Type 2 diabetic and just HATE the idea that my only choice is to swim all day in dextrose) even with "just" a 3-hour dwell.  So I'm probably beating up on my peritoneum and it won't last long. 

The worst thing is that before PD I was a very well controlled diabetic by just diet alone (low carb).  Kept my A1c at a very good level without drugs.  Now I'm a mess.  Blood sugar is up, I feel crappy and I'm on my way to being like a beached whale by steadily gaining weight.  So that makes me very unhappy with PD.  I'm going to have to start diabetes drugs and that feels like a personal failure even though it is all the fault of bathing in dextrose all day long.

I'm far from being an expert on PD, but was referring to relying a good deal on 4.25%s.  Being diabetic just adds one more lousy dimension to dealing with renal failure.  It truly is a delicate balance especially with PD.  Are you aware of the home dialysis central website?  great place to go to get info from renown renal practitioners.  check out the PD forums, ask some questions, and get info to take back to discuss with your nephrologist.  http://forums.homedialysis.org/

[kickingandscreaming]

Are you aware of the home dialysis central website?  great place to go to get info from renown renal practitioners.  check out the PD forums, ask some questions, and get info to take back to discuss with your nephrologist.  http://forums.homedialysis.org/

I do subscribe to their newsletter, but haven't tried their forum.  I will. Thanks.

[Deanne]

The first TX center I talked to refused to schedule appointments unless I brought a care partner with me. I took a friend to my first appointment (social worker, finance person, etc), but when I called to schedule my testing appointments, they refused to schedule because I couldn't guarantee I would a single, defined care partner with me. They said if I showed up alone, or with a different person for different appointments, they would send me home. My neph tried to intervene, but they wouldn't budge, so I had to walk away. My family in Minnesota (I'm in Oregon) were planning to come out after my surgery, but it wasn't reasonable to have them move out here indefinitely and the TX center would accept nothing else.

The second center asked me to bring someone only to the first appointment. They required a written plan that included post-surgery care, including names and phone numbers. I had a successful surgery from them. My family flew out and was in my hospital room each day, but the only time that they were required to be there, as far as I could tell, was to go over post transplant rules and medications. When I went home, my family butted out for the most part. I was able to take care of myself. They drove me for about the first three weeks, then handed the keys back to me. Technically, I don't think I was allowed to drive for about six weeks, but I was off pain meds and taking care of myself.

I think they all require a post-surgery plan of some sort that includes some sort of care from someone else.

[kickingandscreaming]

I think they all require a post-surgery plan of some sort that includes some sort of care from someone else.

Your experience fits with my assumptions.  I guess that settles that.  I have no family.  My friends all work or don't drive or are in distant states and have their own lives to tend to.  No one will move in with me and chauffeur me around for weeks.  I can't afford to hire a private home health aide.  So I guess it's dialysis until I die.  I sure wish (for more reasons than this) that my husband were still alive.

[Deanne]

I'm single and live alone. I just decided that if there was a will, there was a way.

What about free or reduced room-sharing? Exchange a room in your home for care duties.
Or do you have long-term care insurance? I was going to look into using it post-transplant if I couldn't find care on my own.
Or connect with other potential transplant recipients in your area to see if you can exchange post-transplant care.

Depending on your overall health, you might not need that much help. I know some people need a lot of post-surgical care, but I didn't need help, and it sounds like you're pretty confident in your abilities to take care of yourself, too. Of course there can always be nasty post-surgical surprises to think about, too.

Maybe someone else here has other ideas.

[Fabkiwi06]

I live in Tennessee, and my family is all in Michigan. For the most part, I've been navigating all of this on my own.

For my transplant appointments, they recommended bringing a care partner. I didn't, and when they asked I explained the situation. So far it hasn't been an issue since I've been handling most everything else on my own.

I'm not sure where you are or if these options would work for you, but here's what I've come up with so far in regards to recovery - should I not be able to have family stay with me for the entire time.

- Transportation can be done through the Medicare Ride program my clinic offers. Also, Uber - which is looking like it would be the easier option.
- Amazon Prime delivers groceries. We have a few other Grocery deliver options here as well.
- Medicare does cover some short-term in home care options. I still need to check with my social worker at my clinic to see what will be available for me at my age. It does seem like if you get your doctors to sign off on the need for it, you can probably get it covered.

Certainly, talk it over with your center and your team, but it does seem like you can cobble together enough services to be taken care of without a live-in person. Especially, since it's short term.

[kickingandscreaming]

Thank you Deanne and Fabkiwi for the encouragement.  I am seeing my nephro this week so I'll discuss whether there are any options to make it worthwhile pursuing.  I already am renting out the upstairs in my house and the area in which I live is quite small.  My tenants aren't here to be my nursemaids although I am sure they'd pitch in in small ways.  I live in an area that doesn't have Uber (I don't think). I'm in suburban Boston and my clinic would be a hefty drive.   No public transportation.  The local Council on Aging does provide discounted taxi rides to medical appointments, but the cost adds up when you're running in and out lots of times.  This is all probably quite moot since I'm not highly eligible for a decent kidney anyway (Expanded Criteria only).  But I'm just playing with the idea that would probably be in the distant future if it ever was to happen.

I'm very independent in general and have a hard time accepting help under the best/worst of circumstances.  Last year before I had 2 cataract surgeries I was effectively blind for a long time while I waited for an opening.  I needed lots of rides then and friends to help me shop, etc.   But I could still cook for myself and shower unassisted and important things like that.