Need To Come Up w/a Post-Op Plan

[paul.karen]

Sorry to read this Karen.  I have sen some of your moms replies to you in your posts.  And must say i was surprised at some things she would say in an Open Forum.  And it is easy to see that it truly is about her.  I am hoping she will come around and see that her daughter is truly sick, i tell myself she must just be very uneducated about dialysis like so many people are.  But then i know how proactive you are and im sure you have told her what you know of the disease.  So around the circle we go and i quess she just has to one up her own daughter whenever she can.  Truly sad.
You will make due of that im sure.  May be harder then you wish it to be but you will prevail.

[Brightsky69]

Karen....my mom childish also. Although not to the extent as your mom is.
My mom is 68 going on 6. She uses phrases like "I fall down go boom."
Hang in there!!!

[jeannea]

I'm so sorry that your parents are this selfish. I feel better now that my selfish relatives are my aunt and grandmother and I can ignore them. My parents always help me.

I'm glad to see your sister will help. Unfortunately you will need some help. I've had one transplant. The doctors forbid you from driving for 6 weeks which can make things difficult. And you can't just disobey them because then your insurance won't cover you if you get in an accident. Also, the pain is enough that driving would be tough. After the first 2-3 days though I was able to do many things around the house. When I went to the grocery store and still had the 10 pound weight restriction, I just told the bag boy that I had had surgery and needed bags less than 10 pounds. Then I made a bizillion trips to my second floor apartment. Although my parents were wonderful and I stayed with them the first 7 weeks until I was cleared to return to work.

I live in PA so I can't help or I would. I wish you the best.

[paris]

This is such a sad situation.  As a mother, I just don't understand another mother who turns their back when their child is in need -- I don't care how old my kids get, they know I will always be there.   I am so very sorry.   Wish I could help or make things better.   I'll keep you in my prayers.  (Or you could give us your Mom's phone number and we could all give her a piece of our minds!)             

[RichardMEL]

From personal experience (well via facebook anyway) Karen's mom doesn't listen to people giving her a piece of their mind. I think it's because she watches "The #1 Cable News Network" and believes that it really IS "fair and balanced" 

I agree with Paris - I'm NOT a parent, and never want to be one, BUT all the wonderful parents out there I do know, and I include my own mother (RIP) here, would do ANYTHING for their kids. The children come #1 more than themselves. Yet somehow there are some out there, as we have seen, that just don't seem to have that inside them. You'd think, even if she didn't understand fully what the deal with dialysis and transplant is, that she'd support her child no matter what.. instead she's openly questioning UW's requirements for post-transplant like she's some kind of expert, and going on about the impact on HER life of potentially having to assist her daughter get a new shot at life. I mean.. WTF??? Lady you can go to Vegas anytime!! Sheesh!

I too just shake my head at this very sad situation. Sad for Karen, and very sad for her mom because both are missing out.

I would have loved to have drop in on Seattle and have dinner with Karen's mom and explain my experiences both with dialysis and transplant and just what it means to have this new lease on life, and how important it is to do these post-transplant clinics, and to be looked after initially (I had my sister) and all of that stuff.. but this woman is so clearly closed minded it wouldn't matter if the whole of IHD talked to her....


to karen: 

[RightSide]

I, a bachelor, live completely alone, in a suburban town hundreds of miles from any of my relatives.

I just got a transplant on January 26.  Since that time, I have been paying a professional caregiver agency, Visiting Angels, to assign me caregivers to do chores which are too strenuous for me to do, and to drive me to my various appointments and to take me shopping.  Their caregivers are all trained in basic first aid or better.

To ask your relatives or friends to take care of you is to ask a lot.  For the first week or so, you may need to be supervised 24x7.  (A wise precaution; I've had surgeries go bad right after coming home.)  And if something does go wrong, do your relatives know basic first aid?  Do they know CPR?  Could they control bleeding from your incision or elsewhere?  No, I believe that post-op care is a job for professionals.  And that's what I did.

Instead of going begging to your relatives and friends, I would suggest you work with your social worker to find you a similar caregiver agency in your community.  Contact them and explain your situation.  Your insurance may not cover it, but you can always deduct it off your taxes.   

[Chris]

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

I didn't see this post before and then talkingto you on FB I realized I suggested what everyone else has.
 
Boy your center is stringent about who is helping you. If I had no one, my center would have me stay at the rehab center nearby where nurses could check on me. All I had to do was just walk a couple blocks to the clinic.
 
One thing I have thought about is is that you should ask about having your labs done closer to home rather than going up there all the time. That is if you have a hospital nearby. Of course you need to go there after being released, that's a given.
 
Now about getting to your hospital/ clinic. Do you have a commuter train that can take you close to the center and then take a cab there? Since I don't know how far away you live from your center, I'm grabbing at straws, but if travelling by a commuter train that has a station close to your home, that could be a selling point for someone you may ask to help. Also less frustration in driving during rush hour traffic and then having to find a place to park.
If you could plan it right, have RichardMel help you

[paris]

Chris is right about the labs. My center is an hour away, but I have my labs done 5 minutes from my house.  The center gave me tubes and mailing envelopes for the cellcept and prograf labs. The tech draws all the blood--then they run the regular labs and fax them to transplant center that day.  The envelope is preaddressed to the transplant center and they run that one.   It was so nice to just drop by the local draw center 3 times a week instead of going to the hospital.   Ask your co-ordinator if that is a possibility.   

I hope others that have done this alone give you their advice.  (I'm thinking Meinuk might me a big help)

Good luck Karen.  We're all thinking of you     

[RichardMEL]

lol!!!

I can't drive so I'd be useless as help

Just on getting your labs elsewhere, it's interesting because I had an email exchange with my transplant co-ordinator yesterday sort of along those lines. The situation being that they've decided I only need to do labs once a week when I come in for clinic.

That's all well and good, except the way it works is that I have to do bloods in the morning right before clinic, because I have to do a 2 hour post cyclosporin level, so it's a time sensitive test and clinic is only done in the morning. So I do labs, then go to clinic, well unless I'm kept waiting for an hour and a half, the results won't be in (and even then the cyclo levels take longer to come through) so basically any results will thus be a week old.

So I basically asked why not do my labs on Friday morning so that all those results will be in for when I show up to clinic on the Monday and they will be more timely.

Well she said that's fine and she mentioned (and here's the point of this ramble) that she has a number of patients that get their labs done at their local hospitals or other places and have the results sent to the transplant unit. Surely something like that can happen there as well?!!

And yes, I agree the UW requirements are very full on. I think I posted earlier that my lot just asked me what I had planned for when I got out of hospital - and that was AFTER the transplant!  Now they were happy that I'd organised to stay with my sister for a few weeks etc and that was all fine, but they didn't seem too fussed as long as something was worked out.

Of course because I live so close I guess that helped.

[Chris]

Spakig of labs, if your local hospital is closer and you plan to get your labs done there, ask someone in the lab department on what labs they do in house and which ones they have to send out along with how long it takes to get results.
 
With my local hospital they do most of my labs in house and have to send out my prograf, rapamune, and then CellCept when I was taking it. The results are back within 2 to 3 days. I always wait 3 days before I pick up my lab results though. So the more you know about your local hospital or lab center, the better prepared you can be when you go in for clinic, even have lab results with incase the clinic does not have all the results.

[KarenInWA]

I will have to ask about getting labs done elsewhere.  I think I did ask that at the eval appt, and it seemed the answer was no, but I can't really remember.  UW does have satellite locations, so that would be nice!

Chris - this is Seattle.  We don't have commuter trains!  Well, we do, but it's a bit of a drive to get to, and they only run during peak hours, and only to one location - by the stadiums south of downtown.  UW is north of downtown.  To take the bus would be a bit of a hassle, and not sure I want to do that so soon after transplant, anyway.  Oh, btw, Seattle *does* have a trolley.  The "South Lake Union Trolley".  They changed it to "Streetcar" after realizing what the acronym was! 

Richard - you may not drive, but you could help me manage my meds, cook, and do my laundry! 

I am also going to look into Home Healthcare.  Apparently, my insurance will pay for that.

KarenInWA

[Jie]

Karen,

Do you have to do transplant at UW? I know UW is a good center. However, my ex-neph does not like it. I visited both Virginia Mason and Swetish and decided to go to Swetish. Both Virginia Mason and Swetish are more accessible than UW. I had a difficulty to schedule a visit to UW, so I gave up.   

[thegrammalady]

when i first read this post my thought was..........if i had someplace to stay, a car to use and could schedule my dialysis on days you didn't need me.......i'd be glad to come help out..............hmmmmmmmmm it's a thought.

[RichardMEL]

Karen you want me to cook for you??? Oh hell lady you're asking for trouble there!! I'm amazed I haven't given myself some kind of infection (maybe I have?!?!) from my attempts in the kitchen!!  As for the laundry, are you SURE you want me near your unmentionables?!!! And that lovely white tshirt WILL turn pink, or green, or brown.....

Here's some trivia, the "streetcar" system of which you speak actually uses tramcars from my city, Melbourne. They were bought back in the 80's or 90's to run in Seattle as our govt was selling off old rollingstock. I see pics of the Seattle ones and it takes me back to riding to school in those very same types of trams.

note to self: must get on it for a ride when I visit - between cooking up something bad and the laundry, of course! 

[paris]

Grammalady, that was such an incredible offer!!  I know you would do it, too.   Things like that are what restores my faith in people.  You are a sweetie to make such an offer.   

Karen, maybe Grammalady would be the answer to your prayers!!!

[Chris]

Karen you want me to cook for you??? Oh hell lady you're asking for trouble there!! I'm amazed I haven't given myself some kind of infection (maybe I have?!?!) from my attempts in the kitchen!!  As for the laundry, are you SURE you want me near your unmentionables?!!! And that lovely white tshirt WILL turn pink, or green, or brown.....

Here's some trivia, the "streetcar" system of which you speak actually uses tramcars from my city, Melbourne. They were bought back in the 80's or 90's to run in Seattle as our govt was selling off old rollingstock. I see pics of the Seattle ones and it takes me back to riding to school in those very same types of trams.

note to self: must get on it for a ride when I visit - between cooking up something bad and the laundry, of course! 

Note to self should be to learn how to cook 
It gets easy with practice and paying attention to cooking shows. That's how I learned.
Laundry, whites only in hot or warm water, lights in cold,darks in cold, towels in hot, and bleach or bleach alternative only in whites. Then if you have an he washer, or crap, then you gotta pay attention to what detergent you buy.
 
Class over 
 
Karen, if all else fails, atleast we can help

[RichardMEL]

LOL all good. I was (mostly) kidding.

Actually since my tx I have been doing a lot more of my own cooking (only way to be sure what's going in there and that it's fully cooked through!!) and while I like the KISS principle (Keep it simple, stupid) that suits me just fine now. You know, stir fry chicken with some sauce and vegies, or cooking my own pasta sauce to freeze and use later, or oven baked fish, potatoes and steamed veggies. Reasonably healthy.

I still wouldn't put Karen through my efforts though. I figure if I cook something that tastes like crap the only ones to suffer is me n Danny..... 

My real beef with doing my cooking is that it annoys me when there's just me and to cook anything usually winds up creating 2-3 pots, pans whatever of stuff to wash up, and that's a PITA for just me!! 

Oh and I've been washing my own clothes and stuff for the best part of 17+ years. I think I know what to do with the whites  

I'm not totally useless

Anyhoo this is getting OT (Sorry!)

[Chris]

Or just get Karen pies from the Cheesecake Factory from what I read elsewhere. That would be good recovery food 

[RichardMEL]

lol sounds healthy but sure. Just go out every night. Saves on washing up!!!

[KarenInWA]

Richard and Chris - thank you both for cracking me up!!!

Chris - I do have one of those he washers.  Thing is, here in the Evergreen state, it is actually really easy to find detergent for it.  In fact, I think that's the only thing Costco carries.  We're all about "keeping it green" up here.  I feel bad for those who have regular washers, though I'm sure they have no problem finding their detergent.

Cheesecake Factory is only in downtown Seattle and Bellevue.  Someone would have to drive us!  Parking is free in Bellevue, so they get my vote. Oh, and I highly recommend the Southern Chicken Sliders.  Yum!

Richard - your cooking sounds fine.  What's wrong with it?  Does the chicken turn out dry or rubbery? I'm not the best at cooking, either.  I need to just get in the kitchen and try it, already!

[Chris]

We just got a new washerand it's an he one. A week before we just bought detergent we can't or not suppose to use and had to look for ones with he on it. grrrrr
 
Anyway, borrow my handicap placcard and get front row parking....lol
Marinate chicken for a few hours such as lemon juice, also mandarin orange juice works well and cook it with some crushed basil, oregano, or herb of your choice. Then place a slice of mozerella on top with a slice of lemon or orange and a basil leaf. Turn out good, also garlic can be used with it.

[thegrammalady]

you really do need to use the he detergent. my sister didn't use it in her first he washer......well i guess i made my point....she now has a 2nd he washer    the ball bearings went out on the first one and while it still worked it sounded like a jet plane was landing in her garage.

[RichardMEL]

Wouldn't have been a 787 then..... 

As for my cooking... let's just say Gordon Ramsay I am not.. but then again maybe that is a good thing?