Need To Come Up w/a Post-Op Plan

[KarenInWA]

I don't know where to put this, so I thought I'd put it here and the mods can move it if needed.

I am still in the process of getting listed.  When I started this with my eval visit on Dec 1st, my eGFR was 19.  It is now 16.  I have a breast biopsy on Feb 2nd and should be listed sometime after that.  The biopsy is to prove that the little, microscopic 7mm lump is indeed benign. 

I also need to come up with a post-op plan.  I was told I have the paperwork for it, but I cannot find it.  I will be calling them today to have them fax me a copy.  What they want to know is, who will be taking care of me post-op and taking me to the hospital 3 times a week for my labs/clinic visits while I cannot drive myself, which is typically the first 4 weeks. 

Well, I found out this weekend how much I mean to my immediate family.  I live close to my sister and brother-in-law, but they both have FT jobs and bills to pay.  My retired parents live about 50 miles away from me, and so far have not offered themselves up to be my caretakers.  They don't understand why I have to be at these appts so early in the morning and "what a HUGE responsibility" that is.  Well, DUH!!! Taking someone's organ and using it for yourself IS a HUGE responsibility!!! That's why they want me to have a @#*!% plan before they put me on the list!!!!  My mom even asked me if there is lodging nearby the hospital that I could stay at!  Um, yes, but it is a bit $$$ and besides - I STILL NEED A CARETAKER WHO GIVES A FLYING $%&*!!!!  I told them I will not be able to lift 10lbs or more for 2 months after surgery.  How does one bring home groceries, etc, do laundry, etc with restrictions like that???  Granted, maybe 2 mos is on the long side, maybe it won't take me quite that long.  But, I don't know this right now, do I???  Anyone have any advice? I had no idea I'd be in this predicament.

KarenInWA

[paul.karen]

hey karen quick question.  Is your house one or two bedroom??
If it is a two bedroom maybe you could get a live in companion.  They could do cooking cleaning ect, for a room.  And when the time comes they could help you with doctors laundry ect.

I learned long ago that i shouldnt rely on anyone for anything.  That kinda sucks to say but sometimes family want what they want and dont think twice about others.  Even others in there own family.

[KarenInWA]

hey karen quick question.  Is your house one or two bedroom??
If it is a two bedroom maybe you could get a live in companion.  They could do cooking cleaning ect, for a room.  And when the time comes they could help you with doctors laundry ect.

I learned long ago that i shouldnt rely on anyone for anything.  That kinda sucks to say but sometimes family want what they want and dont think twice about others.  Even others in there own family.

Paul, I do have a 2 bdr townhouse condo, but am not sure how easy it would be to clean it out and then find a companion who would be willing or able to do all of that. Especially since I want to do HHD, I need some place to put all the supplies. My place is not very big at 936 ft, so it would be a bit cramped.  I really wish I hadn't bought this place 6 yrs ago.  Hindsight is SO 20/20.

KarenInWA

[KarenInWA]

Forgot to add - I do want to make it a project to re-do that 2nd bedr so I can have a guest bed in it. There are now some pretty fancy airbeds that have "box springs", so they're as tall as a real bed.  A twin could fit nicely in there.  Most of these are Queens, but I think that may be a bit too big for this room.  Maybe I'll measure it later tonight.

KarenInWA

[Deanne]

I'll be in the same boat soon. My family is all in Minnesota. Do you have any friends who are retired? Is long-term care insurance a possibility? Would your friends be able to alternate rides? Friend X takes me in for labs on Mondays, Friend Y takes me on Wednesdays, Friend Z on Fridays? How far away is the clinic where you'll have your labs done? It might be expensive, but what about cabs? In some places, I think there might also be medical-type of transport things around for lower cost transportation.

I signed up for long-term care insurance a while back and I'm hoping I can use it for things like this. If that doesn't work, I have a friend who is retired (in her mid-70s) and I think she'll be willing to help. She offered me a kidney, so I think she'll be ok with my asking for rides, even though she lives about 1/2 hour away. I think I'll hire neighbor kids to take care of the litter boxes, and I have another pet-sitter in mind to get the dogs some exercise if I can't. I have a couple other neighbors who I think will help out with other small things (groceries) if needed. I think it'll be a matter of dividing up the different tasks so no one person feels he / she has to carry the full burden.

[jbeany]

Check with your local kidney groups to see if they have any volunteers for that sort of thing as well.  Lots of places, like churches and senior citizens arrange volunteers to give rides to senior citizens - check with some of those to see if they would do the same for a transplant patient, regardless of age. 

[tyefly]

  I understand and feel for you ...its hard to depend on others...   and its hard to put a plan together..... like others have said   they should be people up there who would like a room mate....  and could fit in for that temperory roll  post transplant....  I am sure you could work that out...as far as home hemo....  I dont know if your clinic requires a care partner but home hemo can be done all by your self.... I had to use a care partner while training ( who was my 25 year old daughter ) but she only came in a few day to see what to do in a  emergency....  other than that I do it all... with no problems...  As far as a post plan    try to put down someone so you can get listed.....when the time comes  you can always have someone else in place.....  and  If all else fails.... I live in Vancouver Wa  and I will come up there and do it.....   but I would have to bring my machine with me....LOL...   

[Sax-O-Trix]

I wasn't asked about specifics on who/what/when would help me out after a potential surgery when I listed.  They asked if I had help and I said "yes" and that was all there was to that conversation.  I think the previous replies are all very helpful:)

[MooseMom]

I had major abdominal surgery 2 years ago, and at the very last moment when I was still in the hospital, my husband's boss decided that he couldn't take time off after all to look after me, so I was left completely in the lurch, completely alone.  And this was after I had spent 2 nights in ICU!  I quickly learned that I was actually able to do a LOT more than I thought I'd be able to do.  I still did laundry, I still cooked and looked after the house, but I was just very slow about it!  The more I did, the better I felt and the more quickly I recovered.

ASSUMING THAT YOUR SURGERY WENT WELL AND THERE WERE NO COMPLICATIONS, you will probably find that you are not going to be nearly as "disabled" as you think you will be.  You will probably spend more nights in the hospital than I did simply because the docs will want to keep a very close eye on your labs, so by the time you actually go home, you will be more healed than you may anticipate.

You can hire just about every service imaginable, and now is the time to plan.  Maybe look into Peapod (my next door neighbor uses them) for grocery delivery.  My local grocery store has a delivery service.  Lord knows there are plenty of housekeeping services around...maybe contact them and explain your situation and see what they charge for a once a week clean for a month (you probably won't need them that often).

Instead of your transplant center doing nothing more than asking you what your post op plans are, their social worker should be able to make some suggestions.  I KNOW you are not the only person on the planet who needs a kidney transplant who has no family around!

The real bugbear is getting to and from the very frequent appointments.  Public transport probably wouldn't be the best idea for the first couple of weeks just because it might be uncomfortable for you.  Hell, get a cab if necessary!  Perhaps you could start stashing a bit of money away each month so that you can have a post-op pot of gold to use for these types of expenses.  (I had to drive myself to my first post-op appt a week after my surgery, and it was not fun.  But the doc's office was only a 10 minute drive away, so it was doable, but getting to a transplant center is usually not that easy!)

I did find that spending the vast majority of my post-op time alone had its perks!  I could recover at my own pace and not have to worry about anticipating and addressing someone else's needs. 

[Brightsky69]

I hear ya! When I had my 1st transplant I took care of myself. The grocery store was a short walk away. I would only pick up small stuff at a time. But then again I was 21 years old and full of energy after the transplant. Plus my step monster who was 2 blocks away got mad at me because I didn't call her for any help. She never checked on me until after I went back to work. Turns out I didn't need her sorry A$$ anyway......I digress.
This 2nd transplant was tough. Mainly because I was 41 years old this go around.
I am hoping you can work something out. I agree with Moosemom...you'd be surprised what you capable of doing after your transplant.

[Riki]

I don't understand why they'd want to know this stuff now.  It could be years before you get a kidney.  You could put someone down who will happen, but by the time the transplant actually happens, those people may not be in your life anymore.

I was never asked for that info, but I think it's assumed that my mother will be with me.  However, if she and I are part of a paired donor chain, she could be in a totally different part of the country, and recovering herself.  I've been thinking about it, and I know who I don't want there, but I don't know who would be able to be there and stay with me, because I'd have to go outside the province for my transplant

[Rerun]

Oh Karen, I wish you lived closer.  Do you have a few friends that could take turns? 

           

[KarenInWA]

Thank you everyone for your kind thoughts and ideas.  I am hoping my parents will grow up and realize that in the end, I need *them* to step up and help me.  Granted, it is one thing if they are going through something medically themselves.  But if it is just a disruption in their otherwise sitting-in-their-recliners-watching-Fox-News lifestyle, then they need to step up.

I do have friends that I can go to for help, but I feel that I should not have to rely on them for this except as a back-up.  I think it is really sad that my parents are reacting the way they are. Granted, a lot of it is they just don't get it.  They don't understand what is happening to me and hey, I don't either.  All I do know is, it is happening.  And I have to deal with it, and part of that is coming up w/a plan.  The UW is really big on the patient having a support system.  They want a plan in writing about that.  I will let you know more as I learn more.

KarenInWA

[okarol]

Jenna's transplant hospital actually had lodging available adjacent to the hospital. The social worked said it was "quite modest and humble" but the price was right - about $15 per day. A friend ended up offering their vacation home so we got lucky.
I am STUNNED at your parents lack of interest, or perhaps they are clueless, but my GOD I cannot imagine being so aloof when Jenna needs help. I am sorry, but they need to get educated and get some empathy and give you some support. Ugh, it boggles the mind.
I have a family that is also the type that is too busy to offer help - so I rely on friends. During Jenna's recovery after transplant my best  girlfriends helped a lot. I did all the driving, labs and clinic appts with Jenna, but my friends had Jenna's room painted and carpet cleaned, made her a quilt, dropped off food for my hubby and other kids, picked my son up at school, called people and posted on my caringbridge page. I hope you can get a few friends who can tag team. If I lived closer I'd be happy to help. 

[Brightsky69]

I hear ya about friends. They are nice and polite and always say " Let me know if you need anything or any help" Then when you ask them it's "Oh is that this tuesday??? Yeah...I have to work that day...sorry."

[KarenInWA]

Here is what the UW wants:

Post-Transplant Care Plan For Transplant Candidates

Caregiver(s):

Please make a list of all probable caregivers including their name, address, phone numbers and their relationship to you.  Briefly describe the roll that the caregiver will play in your care (for example, transportation to follow-up appointments).  Your caregiver(s) will need to provide assistance for at least one month after your discharge from the hospital. You will likely need assistance with many daily living activities, such as grocery shopping and meal preparation, light housekeeping, help with your medication management, transportation and a general non-professional level of medical care.  If you live outside of the Puget Sound region your caregiver will be expected to stay with you in your temporary Seattle housing.

Housing:

If you don't live in the Puget Sound area you will need to provide information on where you might be staying locally. You can provide general information, such as staying with relatives or renting an apartment. If you are on Medicaid, you can look into Seattle housing through your local Medicaid Transportation and Housing Broker. As your social worker if you don't have that number.

Transportation:

Please provide information on how you will get to the UW Medical Center when you are called for transplant. Also, please tell us how you will get back and forth to your many outpatient clinic appointments after discharge from the hospital. Who will come with you to these appointments?

I learned a bit more about my mother this weekend, after talking to some relatives.  My mom is of the kind who has to have drama in her life, and also has to make everything "all about her".  She is not happy unless she is having a surgery, or planning a surgery (for herself).  She is very proud of her "surgery list" and loves to boast about her "number" (I think it's now up to 24).  She thinks the UW is ludricous for demanding such a strict, post-op regimen, and "what do they know?"  She has argued her "point" with one relative, and probably with my father as well.  I have now come to the realization that I was dealt 3 sh!tty cards in life - the bad kidney card, the bad-luck-with-men-and-"relationships"-card, and the having-a-selfish-parent card.  I have not talked to my mom or dad since last Saturday, when I first brought this all up.  My mom even asked me if she would have to cancel her upcoming April trip to Vegas!!!  Well, I told her, it's a very very very very very low chance I'd get the call that quick! (and I'm thinking to myself - and if I did, you *wouldn't* cancel your trip? WTF??)  I am beginning to think that maybe I should just write her out of my life.  I no longer want her to be my caregiver anymore, because I'm afraid she might open her big, ugly mouth and spew some rhetoric that will jinx EVERYthing and boot me off the list!  BTW, my sister has stepped up.  She talked to her boss on Monday about what will be happening (eventually) and that she'll need to take me to these appointments.  I also have had other relatives and friends offer as well.  Thank you again for ALL your input!

KarenInWA

[carol1987]

karen,

So glad you sister and others are stepping up!!!

As for your mom and dad....    it makes me feel sick to think they are so clueless and selfish....

[karrye]

Karen if I lived near you I could help and let my dear old MIL have her day with her son. LOL  Anyway, when I had my last child, it was an emergency C-section.  Two days later I was home with a new baby and no help nor painkillers.  My husband had to work and could not take time off.  I managed, slowly but surely.  I know its nothing, in the least, like having a transplant, but you might be stronger than you think.  We women are as a rule! ;P

Take it one day at a time and the next day will take care of itself.  I will keep you in my thoughts and prayers!

[KarenInWA]

Well, after telling my mom in so many words how her attitude about my post-op needs affects me, she has now decided to take the high road and disown me.  She sent me a msg on FB asking me why I blocked her from my "wall" (long story short - she knows no boundaries and got carried away with her comments to my posts), and when I replied to it and told her how I feel, and how my only options in life are: transplant, dialysis, death and how harsh of a reality that is and all the responsibility that comes with said reality, she turned it around, made it all about her, and disowned me.  Yes, folks, this is MY reality!!! Develop a chronic condition with no known cause, live with it for years until it starts becoming a serious reality that now has to be dealt with, do what you need to do to deal with it, and have your own mother disown you in the process!  Whoo Hoo!!! You know how you learn who your real friends are when you hit the skids in life?  Well, in my case, it certainly isn't the people who gave me life! No way, no how!

KarenInWA

[okarol]

  Jeeez.
Sometimes all you can do is shake your head.
 

[Brightsky69]

Boy that is sucky to the 10th degree. You know what...one day she will need you more than you would ever need her. Parents....you can't pick em. 
I know my father is like that. We don't speak and my brother had to call him one time. My brother mentioned that I had to go back on dialysis...this was over 2 years ago. And my so called father said " So...she's been thru all that before." Did say Sorry to hear that...didn't call to check up on me...nothing. That was the moment I totally gave up on him. I have no father now....he is dead to me. 

[Brightsky69]

And my so called father said " So...she's been thru all that before." Didn't say Sorry to hear that...didn't call to check up on me...nothing.

Boy that is sucky to the 10th degree. You know what...one day she will need you more than you would ever need her. Parents....you can't pick em. 
I know my father is like that. We don't speak and my brother had to call him one time. My brother mentioned that I had to go back on dialysis...this was over 2 years ago. And my so called father said " So...she's been thru all that before." Did say Sorry to hear that...didn't call to check up on me...nothing. That was the moment I totally gave up on him. I have no father now....he is dead to me. 

[tyefly]

  I have relatives like that.....    guess then have never been sick  and  they are all about them selves.....

          Hard to understand... here's a good statement....

There comes a point in your life when you realize who matters, who never did, who won't any more, & who always will. So don't worry about people from your past, there's a reason why they didn't make it to your future!! UNKNOWN>....

Keep you chin up  and be strong....

[Brightsky69]

I realized when I was about 12 years old that my father was going to die old and alone.

[KarenInWA]

In my situation, my mother is an adult child.  If things don't go her way, she will (literally) throw a temper tantrum.  She whines ALL the time, over the smallest things.  My parents have been married for 41 years.  She has worn the pants in the family, and dad has always succombed to her.  I don't know if it's out of survival or what, but I think most men would have either divorced her or died from all the stress. 

My mom strongly believes that everything in life revolves around her, and to think otherwise will cause the whining to erupt.  If anyone tries to tell her otherwise, she will whine and bellyache until you either see her way, or give up.  I honestly didn't think she'd take it to this level, but she has. 

KarenInWA