Hell Week

[MooseMom]

Just venting before the weekend begins...

This has been the week from Hell.  Last Friday, we had to travel over to Chicago to see the Social Worker at the transplant unit; all part of the pre-transplant protocol. 
Monday, surgery to create my fistula.  Worst day in the history of my life (so far); they had to sedate me to stop me from sobbing.
Tuesday, I get a call from the dentist who offers me an appointment at 1:00 instead of a previously set appointment on the 31st.  I hadn't been to the dentist in 7 years (there always seemed to be some other crisis that took my attention), but I had to go, again as pre-transplant protocol.  Since I'm eager to be listed asap, I took the early appt, the result being that I was subjected to 90 minutes of dental torture.  But, I now have amazing teeth.
Wednesday started out great as it was the first beautiful day of the year, but after my daily walk, I started feeling really rough.  I ended up in bed for the whole day sleeping off the effects of Vicodin.  I don't really do narcotics well.
Thursday, echocardiogram.  Result, I'm alive.  I hope that's enough for the transplant team.
Today, stress test, for which I had to fast.  And I had to wait an hour before they could get to me.  So here I was, sleep deprived, in pain, hungry and generally miserable, but it was the last test I had to complete.
Now I AM DONE with all of my testing.  I'm going to go have my hair washed by my stylist since I can't get my arm wet, and then I'm going to go collapse in a heap somewhere.  All this palaver and I'm not even on D yet...

[KICKSTART]

The only thing i can say of comfort is , at least all thats behind you now!  I hope things go well for you, because every step you take now to avoid doing D has got to be worth it.

[MooseMom]

Oh, this week just keeps getting better

I had emailed the transplant coordinator that I had finished all of the tests, and I just got word back that the interdisciplinary board meets only twice a month (15th and 30th) to list people.  The absolute soonest I could be listed is 30 March, but it will probably be more like 15 April, according to her, and that is only if it is decided that I need no further testing.  I had three months to get all of the tests done, and I hauled butt and got it all done in exactly one month, all at the same time as getting my fistula and agonizing over the threat of dialysis, and now I have to wait probably another month for no real reason.  I'm rather disappointed.  I am so hoping that I can be listed before I have to start dialysis, and now I don't think that will happen.  It's not really a big deal, but psychologically, it was important to me.  The whole fistula thing has been so hard for me, and I was really hoping for some small reward.

And I hate my fistula.  The bandages aren't even off yet, but I can already feel and hear the "thrill".  I was all set to be rather excited by it, but I hate it.  It's horribly annoying.  It's like a dripping faucet that you can hear all the damn time.  It keeps me awake.  I know I'll get used to it, and I know that I'm supposed to be grateful for it, blah blah blah, but right now, it hurts and it's too noisy.

[MooseMom]

The only thing i can say of comfort is , at least all thats behind you now!  I hope things go well for you, because every step you take now to avoid doing D has got to be worth it.

Oh, I know.  I'm just tired and in pain.  I had hoped to be able to rest after such a traumatic Monday, but that was not to be.  I am hoping that it IS behind me and that someone won't decide I need another test.  I'm just venting.  I want to get all of this vitriol out of my system before the weekend begins. I'll be fine by tonight.

[KICKSTART]

I do know how you feel. No matter what you do or where you go , hospital staff forget we are people. Some days you just feel like a piece of meat , do this , go here , do that , dont complain. You will have days when you just want to have a dam good cry . 

[Poppylicious]

Awww ... *hugs* ... I really hope you have a truly marvellous and relaxing weekend after all that.

And if it's any consolation, my Blokey has had a rather rotten week too (long story, won't hijack your thread!).  I just wish that he'd come on here and read these posts so that he knows he's not the only one who has all this horrid malarkey to go through.

[lou]

Sorry its been such a shitty week. Here's hoping things get better on from here...

[MooseMom]

And if it's any consolation, my Blokey has had a rather rotten week too (long story, won't hijack your thread!).  I just wish that he'd come on here and read these posts so that he knows he's not the only one who has all this horrid malarkey to go through.

You tell him that MooseMom insists he come and read all of my whingeing.  I'm sorry your Blokey has been through the wars, too.  This isn't "my" thread; it's for any poor sod that needs to either complain or else explode.  Tell him to come online and he and I can have a competition for "The Worst Week" prize.  The moderators can decide the winner.  Your blokey hasn't got a chance against me!







EDITED:Fixed quote tag error-kitkatz,Moderator

[MooseMom]

Sorry its been such a shitty week. Here's hoping things get better on from here...

Well, things certainly got better for YOU!!!  Proper yellow wee!  What better 30th birthday present can you get, unless it's proper yellow wee IN PARIS! Tres bien!

[sullidog]

I do hope things get better for ya! If you can hear your fistula in your sleep that's good because that means it's nice and getting strong.
Troy

[needleup]

What?  No colonoscopy??  Lucky dog 

[looneytunes]

When I have weeks like this one it helps me to think...."the only way it can get is better".  I'm sure hoping this next week is much smoother sailing for you.   

[paris]

Most centers transplant boards meet twice a month and some only once a month. They don't tell you all these things until you get to that part. 
There is always one more thing to wait on no matter how prompt you are in getting things done.  It truly is a hurry up and wait process.   It is so frustrating. Patience is not my virture, but it is the one lesson this disease is trying to teach me.   Come here and complain. We all feel you pain.

[MooseMom]

Most centers transplant boards meet twice a month and some only once a month. They don't tell you all these things until you get to that part. 
There is always one more thing to wait on no matter how prompt you are in getting things done.  It truly is a hurry up and wait process.   It is so frustrating. Patience is not my virture, but it is the one lesson this disease is trying to teach me.   Come here and complain. We all feel you pain.

Although no one told me, I assumed that the transplant board met only several times a month.  And I also assume that there will be something more they will decide they want me to do.  I'm ok with that.  But they go on and on about how important it is that I be compliant and show commitment, and even though I do that, they don't let me in on the little secrets.  I can be patient, I can be compliant, I can be committed...I can be anything that is required; all I ask is to be kept informed.  It's supposed to be a team effort, or so they say, and while I understand that I am not their only patient, I don't think it is too much to ask to be kept up to date, especially about the time frame of their pretransplant procedures.  On the flip side, at my age, time passes so quickly anyway!  I think I can be patient.
But to top things off, my arm really was painful last night.  I didn't take my pain pills in a timely manner.

[RichardMEL]

I believe one of the reasons things take so long with transplant evaluations and the like (specially for live donations, but more generally) is that the time itself is a test in a way - of how serious and commited you are. In the case of live donations, it gives time for the notion to fully sink in and for everyone to be fully aware of what is involved.

I realise it is frustrating and communication is vital - MM have you talked to the transplant co-ordinator about this and your feelings?

[topazbeauty]

My center approves transplants once a week, but when I was getting approved my coordinator was gone two Mondays in a row so I had to wait an extra 2 weeks to get approved. For living donors they only meet once a month (which is frustrating for me cause it's the same people meeting to decide and the transplants). My first donor didn't work out and now we are trying to get my second one in (hopefully before April so she can get approved in April). I know it's frustrating, but I have to agree with Mel, part of the waiting is to ensure that you are going to follow the protocols and keep your transplanted kidney happy and healthy. I wish there was an easier and faster process to prove that you're legit, but it's nice that there is something in place to ensure that kidneys go to "good homes"

Keep your chin up.

One thing that has helped me. My dad told me to pick a date, in the future (far away from when it really should be) and have that as your deadline for whatever. Right now I'm waiting for transplant so I have December 7 as my date of transplant. Hopefully, and logically, it should happen far before that. It's the having a deadline that helps me feel like I have some control in my life and something to look forward to. It might help to do the same with transplant steps. If you think that it will be in April at the soonest, say you will be approved by June. Then when you are approved in April it's like a reward.

[monrein]

That certainly does sound like a week from hell MM.  Truly wretched.  I hope your weekend was better and that this week will be less stressful for you.   

[MooseMom]

Right now, I don't feel like I have much to look forward to except the dark hell of dialysis.  My husband and I are trying to decide what to do about our annual summer holiday; we usually go to Northern Michigan for a week, but that is high season and we need to make reservations sooner rather than later.  But I cannot commit to anything because I really don't know what will be going on in, say, July.  I know it is a small thing, but it is illustrative of how little control I have in my life.  Yes, we can certainly do something different this one year, and yes, we can just stay at home and yes, we can be flexible in our plans and yes, I understand that ESRD forces you to think outside of the box.  But ESRD, at least at this point in the process, has taken away my future and has given me nothing to look forward to.  I am frightened to look forward to anything, to put hope into anything, because it could so easily be taken away.  I refuse to even think about retirement because I don't think I will live that long.  So it's more than just an irritation or an annoyance that I may be listed later than I thought...it's a more fundamental grief.

I understand that transplant centers want their kidneys to go to good homes, and I understand that they are probably are testing my commitment.  What about their commitment?  How do I test that?

[RichardMEL]

Well MM hope is ALL I have to go on at this point. Some days I wake up, or I look at a big bottle of water, and I think "someday hopefully soon you will be mine... precious!"(insert Golem voice here). Seriously I think about a better, more normal life, I can have whenever that call comes in. I try not to focus on the restrictions I am under now but think about that goal of a successful transplant and the (relative) freedoms it will give back to me. I live for the moment of that call, and what comes after it (and yes I am well aware the tx could quickly fail, but I want to be positive about this! Not delusional, but postively realistic).

I absolutely understand the issues you are dealing with with not being able to plan anything much because you don't know where you will be at in 3-4 months. I went through that before I started D and could not commit to anything much. Now I have a steady schedule of dialysis I at least know when I can be free and when I can't.. but obviously doing D forces its own restrictions on things. However that's part of life... I just put those longer term plans for longer holidays and stuff on hold for that future when I hopefully won't have dialysis 3x/week and can go places and do stuff with more freedom.

As for their commitment - I guess that's tested when you get the best match possible and a successful transplant.....

[MooseMom]

Richard, every night before I go to bed, my husband prepares for me my sippy cup filled with ice and cold water for me to sip on during the night.  Lately, every time I take a big slurp, I think of you and how this simple pleasure has been denied you.  I remember a post written by you not too long ago in which you dreamed of having a big glass of ice water, and it makes me mad at the world that you can't do such a simple thing without putting your body in danger.  Right now, at this precise moment in time, all I want is for you to get that transplant so that you can have your ice water.

Hope takes courage and energy, and I lack both at present.  I guess it is just the cumulative effect of surgery, painkillers and general weariness.  I slept most of yesterday, and today we went to the arboretum for a nice walk, and I just felt so enervated that it scared me.  I just cannot read my own body, and it is frightening.  I know that it won't be like this forever, but it's the way it is right now, and I will perservere.  I might complain a lot, but I will perservere.  So, thank you for your encouragement.  And tonight, I will pray a special prayer just for you.  I so want you to get that transplant.  I want that soooo much!

[RichardMEL]

aww ty MM that is so very sweet *blush*

don't you worry about me though - i'll be fine - and many others have more problems to deal with than me!!!! At least I can get around easily enough and do my job and have a health care system that actually DOES care for me and will support me whenever that call comes - be it tomorrow or years from now.

I am sure that you will get your strength and positive vibe/hope back in time. I understand how difficult it is for you with where you are right now - I have been there, so I understand at least in part.

You'll get through it and come out the other side stronger. If there's one thing being on dialysis has taught me.. it's taught me some real fundamental truths about life and I think I have changed for the better as a person because of it. I have become more generous to those around me, and not so cuaght up in the "little things" that life throws you, or to hold a grudge for long, and to focus on what's important - living and enjoying life, making the most of what you have, and doing my best to give back for all that I have got...

... and when I do get that transplant and can guzzle that ice water again.. WATCH OUT WORLD!!!! 

ty so much for your very kind post. I am very touched.