I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: KarenInWA on January 24, 2011, 06:19:11 AM

Title: Need To Come Up w/a Post-Op Plan
Post by: KarenInWA on January 24, 2011, 06:19:11 AM
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
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: paul.karen on January 24, 2011, 08:01:42 AM
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.
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: KarenInWA on January 24, 2011, 09:19:47 AM
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
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: KarenInWA on January 24, 2011, 09:22:31 AM
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
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: Deanne on January 24, 2011, 11:44:09 AM
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.
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: jbeany on January 24, 2011, 11:51:58 AM
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. 
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: tyefly on January 24, 2011, 01:32:35 PM
  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...   
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: Sax-O-Trix on January 24, 2011, 02:29:36 PM
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:)
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: MooseMom on January 24, 2011, 02:33:16 PM
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. 
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: Brightsky69 on January 24, 2011, 03:01:10 PM
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.
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: Riki on January 24, 2011, 07:24:45 PM
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
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: Rerun on January 24, 2011, 07:33:17 PM
Oh Karen, I wish you lived closer.  Do you have a few friends that could take turns? 

            :cuddle;
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: KarenInWA on January 24, 2011, 10:19:56 PM
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
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: okarol on January 25, 2011, 01:11:16 AM
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.  :cuddle; :cuddle; :cuddle;
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: Brightsky69 on January 25, 2011, 01:57:12 PM
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."
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: KarenInWA on January 30, 2011, 05:08:46 PM
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
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: carol1987 on January 30, 2011, 06:17:02 PM
karen,

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

As for your mom and dad....    :puke; it makes me feel sick to think they are so clueless and selfish....
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: karrye on January 31, 2011, 10:16:31 AM
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!
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: KarenInWA on February 06, 2011, 10:56:18 PM
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
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: okarol on February 07, 2011, 01:07:49 AM
 ??? Jeeez.
Sometimes all you can do is shake your head.
 :cuddle; :cuddle; :cuddle;
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: Brightsky69 on February 07, 2011, 06:28:34 AM
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.  :P
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.  :boxing;
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: Brightsky69 on February 07, 2011, 06:30:10 AM
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.  :P
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.  :boxing;
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: tyefly on February 07, 2011, 06:31:50 AM
  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....
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: Brightsky69 on February 07, 2011, 06:33:57 AM
I realized when I was about 12 years old that my father was going to die old and alone.
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: KarenInWA on February 07, 2011, 07:14:18 AM
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
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: paul.karen on February 07, 2011, 09:20:39 AM
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.
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: Brightsky69 on February 07, 2011, 09:43:19 AM
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!!! :cuddle;
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: jeannea on February 07, 2011, 10:56:27 AM
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.
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: paris on February 07, 2011, 02:51:02 PM
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!)      :grouphug;    :grouphug;    :grouphug;
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: RichardMEL on February 07, 2011, 04:39:44 PM
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"  :rofl; :rofl; :rofl; :rofl;

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:  :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle;
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: RightSide on February 08, 2011, 12:46:18 PM
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.   ;D
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: Chris on February 08, 2011, 06:07:23 PM
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 :sarcasm; :rofl;
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: paris on February 08, 2011, 06:31:37 PM
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     :cuddle;
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: RichardMEL on February 08, 2011, 06:35:46 PM
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!  :rofl; 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.
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: Chris on February 08, 2011, 07:26:40 PM
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.
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: KarenInWA on February 09, 2011, 08:07:21 AM
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!  :rofl;

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
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: Jie on February 09, 2011, 11:58:00 AM
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.   
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: thegrammalady on February 09, 2011, 01:46:21 PM
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.
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: RichardMEL on February 09, 2011, 05:30:40 PM
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!!  :rofl; :rofl; 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..... :rofl; :rofl; :rofl; :rofl;

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!  :rofl; :rofl; :rofl; :rofl;
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: paris on February 09, 2011, 06:21:04 PM
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!!!
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: Chris on February 09, 2011, 11:01:23 PM
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!!  :rofl; :rofl; 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..... :rofl; :rofl; :rofl; :rofl;

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!  :rofl; :rofl; :rofl; :rofl;

Note to self should be to learn how to cook  :rofl;
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  :rofl; :rofl;
 
Karen, if all else fails, atleast we can help
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: RichardMEL on February 09, 2011, 11:07:54 PM
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.....  :rofl;

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!!  :rofl;

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 :)  :rofl;

I'm not totally useless :)

Anyhoo this is getting OT (Sorry!)
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: Chris on February 09, 2011, 11:25:25 PM
Or just get Karen pies from the Cheesecake Factory from what I read elsewhere. That would be good recovery food  :rofl;
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: RichardMEL on February 10, 2011, 02:33:13 AM
lol sounds healthy but sure. Just go out every night. Saves on washing up!!!

:)
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: KarenInWA on February 10, 2011, 06:08:56 AM
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!
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: Chris on February 10, 2011, 01:13:41 PM
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.
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: thegrammalady on February 10, 2011, 03:51:18 PM
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  :rofl;  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. :rofl; :rofl; :rofl;
Title: Re: Need To Come Up w/a Post-Op Plan
Post by: RichardMEL on February 10, 2011, 05:10:22 PM
Wouldn't have been a 787 then.....  :rofl;

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