I am so disappointed...

[MooseMom]

I know this is all just part of it, and I know I should have expected it, but I am so disappointed anyway.  The transplant coordinator just called and gave me a whole list of things they need me to do.  The abdominal ultrasound didn't give them the information they wanted, so I have to have another one done.  They want me to have an adenosine stress test because the treadmill test I did was inadequate.  That was partly my fault because I scheduled it right after I had my fistula surgery and I didn't have much energy; I was too eager to comply.  That adenosine stress test really frightens me because I hate the idea of having to have drugs injected to stress my heart.  And then I have to have a cardiologist consult; I don't even have a cardiologist, so I have to get one.  They want more info on the colonoscopy I had a few years ago.  And I have to have surgery to remove my gall bladder.  God, I just had an operation a few weeks ago, and now I have to do that all over again.

My son is here from London for a few weeks, and I so wanted to have some stress free time with him, but I guess there is no such thing as stress free time.  I just really really hate my life.  The stress has been crippling, and there is no end in sight, which is the worst part of it.

Rant over for now.

[monrein]

MooseMom, that does sound like quite a stretch of hurdles and just thinking about them all together is overwhelmingly stressful.      Is it possible to get the cardiologist consult before the adenosine test so you can ask more about it, and explain the issue of the unfortunate scheduling the first time?  Perhaps he/she could either recommend another standard stress test OR reassure you about the adenosine test.

I'm so sorry that this comes during your son's visit.   

[MooseMom]

Believe me, I researched the adenosine stress test; originally, that's what they wanted me to do, but I talked them out of it because I can walk just fine.  I explained today about having had the surgery just a few days before the treadmill test, but they were unmoved.  I don't know if it is worth it to try the treadmill test again as, well, my kidneys are failing and maybe I won't be able to work as hard on the treadmill as I thought I could and would end up having to do the adenosine test anyway.  It's just one more instance where I will just somehow have to find the courage to do something horrible.

[jbeany]

I've done the medically induced stress test.  It wasn't thrilling - it's weird to feel your heart pounding out of your chest without being terrified at the same time - but it wasn't bad, either.  At least you don't end up all sweaty with the drug version.  (My hospital is an hour's drive from my house, and located in one of the few big towns with decent shopping in the area.  If I had to go, I was going shopping, too, and didn't want to stink around everyone I saw for the rest of the day!)  My transplant center ordered the drug version of the test for all their patients, regardless of physical health status.  I've done both, but only because my local doc mis-ordered a regular treadmill test for the last one. 

[monrein]

So that's reassuring jbeany...I don't know anyone here who's had the adenosine but the bottom line is you gotta do what you gotta do. 

MM, I just screamed into my cushion on your behalf...you should be feeling tremendous relief...my cushion is still recovering from the shock.

[MooseMom]

Oh, thank you for your thoughts on the test; I was just about to post a question regarding it.  Could you tell me more, or could any one else out there tell me more about your experiences with chemical stress tests?  It just sounds so frightening to me.  Should I arrange for my husband to come with me so that he can drive me home?  I've done all of these tests/appts without being accompanied by anyone, but I just don't know how I will feel physically after this one.  Will I be able to drive myself home?  I don't know why this particular test weirds me out, but it does.

[MooseMom]

MM, I just screamed into my cushion on your behalf...you should be feeling tremendous relief...my cushion is still recovering from the shock.

Nope, not feelin' it just yet.   It takes some time to migrate south, I guess!

[edersham]

I had the chemically induced stress test last October during my screening and it was really no big deal and I just  got my transplant two weeks ago. My wife also  had one 18 months ago before major spine surgery and that went fine also.  Compared to the colonopscopy I had with no drugs(why i have no idea) this was a piece of cake.

[Romona]

I drove myself to have the stress test. It is a little uncomfortable, but not that bad. I feel for you. Jumping through all these hoops is frustrating. 

[MooseMom]

I just feel like I'm having to start over again, that I'm back at square one.  As the coordinator was telling me all of the things their nephrologist wanted, it took everything I had not to break down in tears.  I don't seem to have the energy it takes to be hopeful.  I have fought so hard for so long, and it hasn't mattered one bit.  All I can do now is sit around and wait for my kidneys to eventually fail, and knowing that I am going to get a lot sicker before I get the chance to feel better is just devastating to me.  I allowed myself to hope that determination and dedication is what it takes to get on the list, and that was a mistake.  I won't err like that again.  I have to accept that my fate lies completely out of my hands and in the hands of people who don't even know how to pronounce my name.

[monrein]

There is truth to what you say MooseMom BUT I think that it is incredibly important to continue trying to build rapport with these "professionals" until they do know your name and how to pronounce it too.  I realize I'm just another patient to them but my job is to make them see me as an individual and as one who will do my part to make this process work.  I know from experience that this is possible and I have very good working relationships with the renal people involved in my care.  If you feel like breaking down, do so.  It won't be the first time someone has and most of them are caring people who can become brusque due to workload issues and stress but we're on an emotional roller coaster, not of our choosing, while they have chosen careers in this particular theme park.  You may encounter an idiot but then again you may discover a caring compassionate person who can empathize and give you hope to carry on.
 It can be very hard not to get discouraged and it can really feel that, like Sisyphus, we're rolling that rock up the hill again and again but we just have to rest whenever we can and go back to it with an eye on the summit.   

[paris]

I have done both stress tests, the chemical indused one three times.  It really isn't that bad. I just use breathing techniques to de-stresss and use lots of visualizing (I swim with the sea turtles during part of it!).  The cardiologist is right there along with 2 or 3 nurses.  It does feel strange (that part only lasts a short time) but I kept asking questions and they would tell me exactly what they were doing.    I have learned that there is always one more thing they need.    I felt like you do for awhile --- just sitting around waiting. And then I got tired of that.  People here kept telling me how long they stayed at 15% and what they could do or how they felt.  I decided I could be just like them!  Meinuk told me she stayed at 15% for 5 years----so my goal is to beat her record!!  They told me 4 years ago I would be on dialysis in 6 months and I am not.  So, in the meantime, I did some things on my "bucket list" and kept taking the best care of myself that I could.  Members here helped me find a good attitude and some acceptance and that made a huge difference in turning my "waiting" into "living" again.   Life isn't the same, but I am still here and more and more grateful each day that I am.   (Monrein helps us all learn how to live life with grace and style!).   

My husband comes with me, but he doesn't stay around. He goes for walks, finds bookstores near the hospital and comes back in time to ask me how I am after!  I could easily go by myself, but he thinks he needs to be there.  If he is a comfort, have him go with you.    We are all here for you .

[MooseMom]

I feel I have a good relationship with my transplant coordinator; when we first met, we sort of clicked.  But she had only been in this job for three weeks when I had my evaluation, so I don't want to be overwhelming.  The transplant center I am going to is with a hospital that serves a large urban area, and my guess is that they have a lot of patients to work with.  The nephrologist who makes the decisions re what further tests are needed is someone I've never met and am likely not to meet as it is the coordinator's job to run interference, and that's fine.  The center is in Chicago which, with traffic, is an hour and a half away on a good day, so it's not like I can just pop in when I want to have a quick word.

I'm sure the coordinator is a compassionate person, and that's why I like her (plus she is bright, and I like that in a person), but there was really nothing she could say to calm my disappointment because it is what it is, and she doesn't need to hear blubbing.  I have to just find it within myself to keep going.  I know she does not see me as just another patient because I would never allow that to happen.  

[Rerun]

This is one of the reasons that I'm not on the transplant list.  You jump through all the hoops and then they want all these tests yearly.  So it is a 5 year wait and all I would be doing is tests.  Sounds like a money generating market to me. 

Good luck to you MM.  Just take it one test at a time. 

[MooseMom]

Rerun, I've never thought of it that way, but I can see you may well be right!

Paris, I've read your post 3 times, and I want to memorize it and live by it.  First of all, yes, Monrein is the personification (if that's possible in cyberspace) of style and grace, and I do envy that.  I tend to be rather all over the place, and it shows, so I'm going to try to JUST BREATHE.  Secondly, I'll go for 6 years at 17%...  Is there a glittery prize involved?   And thirdly, regarding the stress test, I will try some relaxation techniques and I will also be nosy.  To get my mind off of unpleasant things, I usually ask the tech all about themselves, and as most people enjoy talking about themselves, I get to hear some pretty wild and personal stories that take my mind off the big needles.

[paris]

You are right, Rerun.  I really don't know why some have to be repeated every year. This will be round four for me this year.  I believe members in Australia have said they don't have all the yearly tests to stay listed.   And your advice is perfect; one test at a time.  You can't worry too far ahead. 

Stay strong MooseMom.   

One more thing - I have had the same nurse for all three stress tests. His name is Art and he remembers me every year!  He tells the cardiologist that I am a pro at this and I handle it well.  We have bonded and he holds my hand and talks me through the whole thing.  I will cross my fingers that you get a wonderful nurse who will talk your ear off during your test.

[MooseMom]

   
My husband comes with me, but he doesn't stay around. He goes for walks, finds bookstores near the hospital and comes back in time to ask me how I am after!  I could easily go by myself, but he thinks he needs to be there.  If he is a comfort, have him go with you.    We are all here for you .

I've never had my husband come with me for anything except a procedure that required anaesthetic and, therefore, a driver, although he did come to the transplant eval with me; I don't think I could have found the hospital on my own as I am not from here.  I would never ask him to accompany me for moral support because his job is demanding and I would not want to put him in a position where he felt like he had to choose between me and his nutcase boss.  However, it would be nice if occasionally he would at least offer to come.  I'd say "no", but still....  There have been so many times when I've been really frightened and could have used the company.  All those neph appts when I knew that bad news was on the menu...

CKD is a very lonely business.

[kellyt]