Transplant coordinator called me

[willowtreewren]

This sounds like wonderful progress! And the good news is that lack of quality sleep can also contribute to difficulty losing weight! Getting your sleep issues sorted out may make it easier for the rest to fall into line.

Rooting for you every step of the way! 

Aleta

[kitkatz]

I have my own APAP machine as of today!  And new nose mask.  Bert at Kaiser gives a good class on the machine.

I also had an echocardiogram again on the heart.

So I spent my morning doing Kaiser appointments.  Picked up a few prescriptions. too.

No one at Kaiser stepped on my toes or made me upset today, thank goodness.

[PrimeTimer]

No one at Kaiser stepped on my toes or made me upset today, thank goodness.

Hopefully they realize their good fortune and things will stay that way!   

[kickingandscreaming]

I'm afraid that the more I read about peoples' experiences with transplants--pre, during and post-- the more I scratch my head and wonder why the hell anyone would want to put themselves through such a wringer.  It sounds like a  torture from start to finish. And such a crapshoot.  I'd rather have the devil I know than the devil I don't know but have heard so much about.  I realize that I'm out of step with most of the renal universe, but why play with fire?

[SutureSelf]

I'm afraid that the more I read about peoples' experiences with transplants--pre, during and post-- the more I scratch my head and wonder why the hell anyone would want to put themselves through such a wringer.  It sounds like a  torture from start to finish. And such a crapshoot.  I'd rather have the devil I know than the devil I don't know but have heard so much about.  I realize that I'm out of step with most of the renal universe, but why play with fire?

Unfortunately, sometimes "I Hate Dialysis" isn't the best place to come to when needing to read positive experiences with transplantation.  I'd say that the majority of IHD members who are transplant recipients doing well are getting on with their lives.  They either don't have the need to come on here any longer or may even feel a bit guilty sharing their positive experience while other members are struggling.  Then there are those who have less than positive outcomes, from navigating the whole transplant process to experiencing the side effects of the meds and even losing their transplant, who come here to vent and share what they have gone through.  And, then again, "doing well," either on dialysis or with a transplant can mean something different from one person to the next.  Some can roll with the punches better than others.

If you want to read more positive kidney transplant stories check out this IHD link - http://ihatedialysis.com/forum/index.php?topic=9656.0

Here's my transplant experience:  I received a cadaver transplant in 1990.  It was slow in "waking up" and I had to go through a period of high doses of solumedrol and then a once in a lifetime only protocol of OKT3 (Muromonab-CD3), a highly toxic monoclonal antibody immunosuppressant drug.  I was a mess for 3 weeks.  But, the OKT3 did the job.  To cut to the chase, I was back to work fulltime 10 weeks post transplant and never looked back.  I had 13.5 good, if not great, years with my transplant (including no side effects from the meds) before going into rejection.   

I've gone through 3 transplant evaluations.  The first was in the mid-1980s and done in 2 consecutive days at the transplant center and then a half day for testing with my urologist back home.  I was placed on the cadaver waiting list less than a month later.  The second time around eval process, with the same transplant center, took about 2 months time to complete.  While being told I was listed, there was a screw up and I wasn't listed as active until 8 months later. 

About 5 years later I was put on inactive (but still accruing points) without being told.  I found out by accident.  Updated testing needed to be performed to make sure I was still a good candidate.  I was pissed off, but what good was it going to do?  Only way to become active again was to go through the hoops.  It took 2 months after the testing.  In all, I was inactive for 7 months. 

A couple of months ago I decided to double list with a local transplant center.  I had to go through the full eval process again.  Most of the testing and interviews were done in a two week period with the urology consult scheduled a month later.  I've been told once that is completed with a positive result, I should be accepted to their program sometime in May.

At times, I felt like a number, plus the staff running the tests had a one size fits all attitude towards dialysis patients.  Example:  I had to take a heart stress test.  They were going to medically induce a higher pulse rate with Dobutamine/Atropine.  I didn't want the meds and stated I could do the treadmill.  Even though I had gone through this 2.5 years ago, staff didn't believe someone on dialysis for 10+ years could successfully  complete the treadmill portion of the test.  Bottom line, I did the treadmill with no problems.

I guess what I'm trying to convey is there's no such thing as the perfect world.  Whatever treatment modality you choose, become actively involved to minimize "glitches."  The simple, but profound message of The Serenity Prayer has helped me during particularly difficult times and situations.  Maybe it can do the same for you:

G-d grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And the wisdom to know the difference.

SutureSelf



 

[kickingandscreaming]

Unfortunately, sometimes "I Hate Dialysis" isn't the best place to come to when needing to read positive experiences with transplantation.  I'd say that the majority of IHD members who are transplant recipients doing well are getting on with their lives.  They either don't have the need to come on here any longer or may even feel a bit guilty sharing their positive experience while other members are struggling.  Then there are those who have less than positive outcomes, from navigating the whole transplant process to experiencing the side effects of the meds and even losing their transplant, who come here to vent and share what they have gone through.  And, then again, "doing well," either on dialysis or with a transplant can mean something different from one person to the next.  Some can roll with the punches better than others.

Thank you, Sutureself, for your thoughtful response.  I agree that there is more press for a place to express "negative" rants than to gloat with the positive.  And that skews what I read.  I don't think it's lack of serenity that concerns me as I am generally a pretty serene (and very mature at 74) person.  I guess I am not suffering enough on PD to want to fix what isn't broken.  Maybe at that inevitable point when PD fails (or at least I am led to believe that that point inevitably arrives if you live long enough) and I am forced to choose between in center HD, transplant or death, then perhaps I will be willing to fill my body with the toxic substances that are part and parcel of the tx process.  That is my main concern.  I have spent my life living "clean."  I am extremely sensitive to drugs.  It is very easy (and logical) to assume that I will be one of the unlucky ones who has a bad reaction to the awful poisons that are central to keeping a tx going. As an asthmatic I have had my share of run ins with prednisone (even had a dog who died from the secondary effects of it). 

So taking a daily cocktail of toxic drugs for the rest of my days is a very terrible concept to me. The super-toxic drugs that go way beyond Pred. are what scare me.  Doing a daily, tedious procedure like PD is a nuisance.  But it doesn't make me feel sick.  It doesn't give me tremors, and panic attacks, and bloat and other symptoms that are both physical, neurological and mental.  And certainly is not nephrotoxic.

[willowtreewren]

My husband's TX evaluation actually went pretty smoothly after one early glitch - some misinformation from the TX social worker.

Once we straightened that out (after 6 months of not pursuing an evaluation), his only took a couple of days. He was on the wait list for less than 3 years before getting a kidney. That was over 5 years ago and the "toxic" meds have not been very much of an issue. The worst of it has been seeing the dermatologist every 6 months to get dubious spots frozen off.

Kit has definitely had to jump through many hoops, but her experience probably isn't typical.  Kitkatz!

Of course, each person must make this very personal decision based on their own circumstances and needs. Either way, IHD is a place to get support.

 

Aleta

[kitkatz]

The saga continues....
So i once again revisited the pulmonary UCLA doctors today.
They want:
A possible fluid only dialysis treatment to remove fluid each week.
Repeat echocardiogram with bubble study
A ventilation/perfusion scan for possible blood clots
A repeat high resolution CT-scan of the chest.
A repeat chest catheterization to see if pulmonary hypertension has gone down.
Test to see if fistula is causing PH.

They want everything done at UCLA by them so they can figure out what is going on with me and Kaiser picking up the bills.

Next appointment June 6th.

Just doing the hoops, one at a time, just doing the hoops....

[iolaire]

A possible fluid only dialysis treatment to remove fluid each week.

What does this mean and what is the point?  (It sounds like dialysis without filtering the toxins, and I'm wondering why they would want that versus just removing more fluid with filtering.)

[cassandra]

The saga continues....
So i once again revisited the pulmonary UCLA doctors today.
They want:
A possible fluid only dialysis treatment to remove fluid each week.
Repeat echocardiogram with bubble study
A ventilation/perfusion scan for possible blood clots
A repeat high resolution CT-scan of the chest.
A repeat chest catheterization to see if pulmonary hypertension has gone down.
Test to see if fistula is causing PH.

They want everything done at UCLA by them so they can figure out what is going on with me and Kaiser picking up the bills.

Next appointment June 6th.

Just doing the hoops, one at a time, just doing the hoops....

O Kit I really feel for you, I would go officially mental

     

 

A possible fluid only dialysis treatment to remove fluid each week.

What does this mean and what is the point?  (It sounds like dialysis without filtering the toxins, and I'm wondering why they would want that versus just removing more fluid with filtering.)

Iolaire I think they mean Berströming (well that's what it's called in Holland) and it's exactly what you think. Only taking liquids of.
Why not take some toxins out too? It's probably a much cheaper dialyzor?

Love and luck, Cas

[kitkatz]

I am trying so hard to keep up with all of the crap I have to do for pulmonary UCLA with Kaiser in the mix too.  A phone call from UCLA coordinator, very frustrating.  Seems Kaiser will do echocardiogram bubble study, however UCLA wanted to do it all so they could see it.    So Saturday dialysis until we have a dry weight determined, then call her back for scheduling of heart catheterization.  Then there was the I have approval and an appointment for CT-scan at UCLA on the 12th.   She says Kaiser will do it, no I have the approval from Kaiser for UCLA to do it.  Well pulmonary did that.  Round and round.   Damn, get your sh** straight before you call me!  So four weeks of extra D, a determination of dry weight then scheduled for tests. 
What a bunch of crap.

[Simon Dog]

A possible fluid only dialysis treatment to remove fluid each week.

What does this mean and what is the point?  (It sounds like dialysis without filtering the toxins, and I'm wondering why they would want that versus just removing more fluid with filtering.)

It's called a PUF run (Pure ultrafiltration).   I don't know why these are done instead of just more regular treatments.   I think PUFs are done with the dialysate side of the circuit dry.

[DialysisGoneFOREVER]

I'm afraid that the more I read about peoples' experiences with transplants--pre, during and post-- the more I scratch my head and wonder why the hell anyone would want to put themselves through such a wringer.  It sounds like a  torture from start to finish. And such a crapshoot.  I'd rather have the devil I know than the devil I don't know but have heard so much about.  I realize that I'm out of step with most of the renal universe, but why play with fire?

Maybe because ANYTHING is preferrable over being a SLAVE to a machine! Kitkat seems to be having an unusually bad experience. But I agree it can be a MASSIVE pain when they seem to order a bunch of tests that have NOTHING to do with the kidney!!

[kitkatz]

They want me doing a PUF to get the fluid that is on my heart, off. 
I saw my Kaiser neph she is willing to get this crap rolling.  Calls for me being admitted to the hospital for a five day/8 hour sessions of dialysis with meds to keep the BP up.
Now to see if Kaiser does it or UCLA.

[kitkatz]

I have lost eight real pounds in the last two weeks.

[Fabkiwi06]

I got listed today! 

Now we just gotta get my live donors tested and hopefully we'll have a match!

[kitkatz]

Hurray listed today for you, wish it could happen here soon!!! 

[kitkatz]

Dietitian Meeting Notes: I talked to the renal dietitian. Showed her my research. She gave me their research. She also gave me ideas to use for dialysis snacks. I have ordered three cook books off of Amazon for 30 bucks to look at and see if I can use them. I have started a dialysis house food book with lists I can use and take with me when shopping. I am marking cook book recipes and going to make a list of things I need in the house in the pantry. Gluten free flour, sugar, baking powder, soda, and spices. Got to set it up in order to begin to cook creatively and well for us. Got to figure out how to get recipes down from servings of 12 to 2, I would not even mark some of the 12 servings recipes in one cook book. She seems to think I am off to a good start in learning good nutritious food ways while on a renal diet.

Medical Notes: My nephrologist says yes I have fluid on my heart that dialysis is not pulling. I am chasing my tail with low bp not enough fluid pull, fluid build up, dialysis....etc. So we are going to do something to dry me out and get it taken care of. Probably admit me to hospital and do 5 days of 8 hour dialysis with good meds to bring the bp up. Plus good meds for me to get through 5 days of dialysis straight with my weird bp. I told her as long as you give me the good meds not the pretend meds to keep me calm and in chair for 8 hours, 5 days straight. Then off to UCLA as soon after for the chest cath to see if the PH is gone or not. Just have to have the docs get it together, plan it, and do it asap. I basically told her let's get this shit done asap.

Today has been hard. I have had a wobbly stomach/ intestine since I tossed my cookies last night at 11 pm. My stomach is teaching me go easy on the food after dialysis. Plus no left overs! I am dealing with a very persnickety system. I am learning that certain foods I cannot eat together. Too much roughage at one time and my entire system objects. I had a tummy ache last night. I used my heating pad all night and hardly slept at all. Miserable. Awoke this morning better, but my BP is crazy low.

[cassandra]

Oh Kitkatz what can I say? Keep strong girl!

     

Love, Cas

[Fabkiwi06]

Man, Kitkatz I hope they get it sorted out soon. Hang in there! Glad your dietician is being supportive. It's a massive learning curve going on this renal diet... all the "healthy options" I used to go to are now off limits!

[kitkatz]

I drove two hours one way and three hours back today for a less than ten minute CT chest scan at UCLA.

At least it is done.

I emailed my nephrologist tonight to see where things are going.

[cassandra]

Any news?

     

[kitkatz]

Doctor is working on getting me in house for dialysis to pull fluid off me as much as possible. 

Hurry up and wait.

[kitkatz]

My cardiologist called me and said people have been discussing my case between Kaiser and UCLA to get things moving so we can get the heart and lung tests redone asap, so UCLA can make a determination.  He has to see me first, then we schedule procedures at Kaiser and get UCLA all of their numbers and such and them we move on from there.

Finally some action, I thought maybe I was going to have to push someone into doing something for me.

[willowtreewren]

 

Let's get this show on the road!

Aleta