Livid!

[Cordelia]

I am very angry. Actually, both my husband and I are. My husband is my living donor. We have been going through transplant testing since January and we *thought* we were nearing the end of the road as far as pre-transplant work up tests were concerned.   

First, my husband's so-called co-ordinator called him just a few weeks ago to tell him that his 24 hour blood presure monitor test, that the recordings had failed. It took him 2 months to finally let us know. We understand that machines fail but it should not have taken this co-ordinator to call 2 months later. We have lost time with that. PLUS, not only that this was the first time this co-ordinator had actually called us. My husband was dealing with MY co-ordinator. (Whom by the way has been terrific)

Anyways, we find out yesterday when he's getting hooked up yet again for the 24-hr BP test that apparently there was 'calcium' in my husband's 24 hour urine collection. He was not told about it. He had this test way back in May and he just finally found out now that he has to do it again. The co-ordinator, even the doctor KNEW themselves and yet did not say anything when my husband saw his doc back in June.   

The delay in finding out these failed tests, is unacceptable. My husband actually "fired"      his coordinator and just got a new one.  Thank God!

Oh, we've also been waiting since June/July to find out when he will get booked to go to a sleep apnea clinic. The one our hospital deals with has a 8 month wait time. That is unacceptable!!!!

We were aiming/planning to have the transplant surgery, if it was a go, either late fall or early Jan/Feb. Fat chance of that happening if he has to wait 8 months for a damn sleep clinic!   

Apparently from what we found out now is that a new doctor has been added to the clinic and it *should* and I say *SHOULD* ease the workload. So, now we're waiting to see if he can get in sooner than that time frame.     

Both my husband and I fell through the cracks with referrals for tests, etc. I'm beginning to feel jinxed. It just seems like other people at my unit are getting a transplant in a timely fashion, except me. My husband and I seem to be having all the bad luck. I know it's happened before in the past cuz we were told we were like the 'second' persons to have had this happened to.  Well, it shouldn't have happened twice. I'm so angry right now because of all this.        

BTW, does anyone know anything about calcium in the urine? The co-ordinator told me that it can cause kidney stones. Is it a show-stopper for a transplant from a live donor? I hope not. My husband is the only one I've got who has offered me a kidney. I  literally have no other family.   

Also, does anyone know if vitamins can cause calcium in the urine? He's been taking a lot of vitamins for the last number of months. I warned him months ago it could cause something screwy with his tests and I'm afraid that maybe it has.     

Anyways, he has to do the 24 hour urine test again. I am hoping he will cut out all vitamins prior to the next time he does the test.

We sure didn't need this added stress!!!         

Things are not always smooth-sailing up here in Canada, either!

[okarol]

  Keep fighting!
I am sorry you've been having so much trouble!
My daughter is having similar troubles, it feels like the team does not seem to have her best interests at heart.
The only thing to do is keep calling, asking for updates, remind them you're taking an active role in your FUTURE!

I found this:

High calcium levels in the urine can cause kidney stones.

A urine calcium test is done to:

See whether a kidney stone has developed because of high amounts of calcium in the urine.
See how much calcium you are getting in your diet and how well it's being absorbed by your intestines.
Look for problems that cause your bones to lose calcium.
See how well your kidneys are working.
Check for problems with the parathyroid glands.
A urine calcium test is not as helpful as a blood calcium test to find certain conditions, such as hyperparathyroidism, bone diseases, or pancreatitis.

[The Noob]

i was just about to ask you where you are, then saw canada.
i don't know how it works there, but here i have been aggravated if i didn't get a call back within a week on something and i always ask for a copy of the extensive labs. if i ever had to go through what you have i would seriously consider if moving were an option. its too hard on D with a living donor waiting, for this type of carp.

if i need to get an answer on something i start calling every hour. the wheel is squeaking so loud you could probably hear it in canada! fight on!

[Cordelia]

Thanks for the info, Okarol         What I'm really hoping is that it won't be a show stopper in the transplant. I have urged my husband to QUIT taking all his vitamins. I warned him and now I'm afraid it'll come back to him in the butt so to speak. I am concerned.

We have been calling frequently. I hear you on the calling, Noob. Sure wish we could micromanage these people!!! We have our flaws here too, even though our procedures are paid for (we don't pay) but.......there are shortages of doctors, etc, etc. The 'wait times' for some tests is absolutely ridiculous! Sometimes, one has to wait 3 + months just to see a specialist, or in our case, 6 months + just to get into a particular clinic, the wait times are so long due to shortages of doctors. It's very frustrating!

Thanks for letting me vent here!   

[rsudock]

 

[MooseMom]

I know that all of the people that we rely on to do their tranplant-evaluation related jobs just see these as mundane tasks, but I have to say that I am constantly surprised by the often complete lack of empathy that some of these folks have.   Do they ever stop and try to imagine what THEY would feel like if they were in our shoes, and don't they ever muster even a modicum of urgency on our behalf?  I guess not.

I hope that your husband's calcium "problem" (if it even IS a problem) is resolved soon.  I am a little concerned about his sleep apnea, though.  I didn't realize he suffered from this.  This can be a pretty dangerous condition that has been linked to cardiac problems, renal problems and obesity, so while it must be maddening to have yet another time-consuming obstacle to address, I do hope he can get timely treatment for this.

I guess I would have thought that if his calcium-y urine was a big problem, they wouldn't have waiting all these months to inform you about it.  But God knows what these people are thinking...or NOT thinking.

Keep us posted on what you find out.  I've very curious about this!

[edersham]

There is a portable unit that can be sent home with a patient that records your oxygen level constantly for 24 hours. That could rule out any sleep apnea issues without a full sleep study and only take about an hour of the clinics time. I've had sleep apnea for 20 years (use a c-pap) and it was not an issue in my transplant process. I can't believe the continuing bs so many ihd'ers have to put up with.

Ed

[monrein]

Cordelia, can you get on to BOTH trx coordinators (I'm glad you fired the first useless nimnod coordinator) about the urgency of the need for the sleep apnea test so that the transplant can proceed and even suggest that he go to a larger centre if where you are is so full.   Ed's suggestion is terrific too and I hope that is a possibility.

With all the cracks and missteps so far it sounds as though you need to keep checking in with the coordinators to make sure they've relayed ALL necessary info and/or results.   

Most of all I hope that no real obstacles to transplant show up. 

[MooseMom]

There is a portable unit that can be sent home with a patient that records your oxygen level constantly for 24 hours. That could rule out any sleep apnea issues without a full sleep study and only take about an hour of the clinics time. I've had sleep apnea for 20 years (use a c-pap) and it was not an issue in my transplant process. I can't believe the continuing bs so many ihd'ers have to put up with.

Ed

This is really good to know!  Thanks for posting this.  And yes, the amount of bs just keeps growing.  I think centers just like to see how many hoops they can create.

[Cordelia]

Thank you, everyone, for your hugs and advice     

That is an excellent idea about that test, Ed. I can forsee one problem with it, though. Here, in Canada, not all tests are covered under our medical plan. I have a hunching feeling that it likely would have to be out of the patient's pocket. It is worthwhile asking about it though, definitely, just to make sure. I have told my husband about this now and he knows and he said he would ask.

I should clarify, my husband does not have a diagnosis of sleep apnea. The clinic is only to rule out yay or nay if he actually has sleep apnea. At this point, we have no clue if he does or not. It is to rule out problems prior to going under anesthetic.

He does not snore anymore since he has lost a great deal of weight, so that is a good thing.   

I've been thinking the same thing, how would these people feel if it were them that they were being jerked around!? I totally have been thinking the same thing these days! I will keep you all posted     

[olivia]

So frustrating!    To the workers Its just a job, But Its our Life in there hands! Don't they get that? 
Keep Calling, keep asking questions, keep on them!!
Take Care,
Olive

[edersham]

If you do a google search for "pulse oximeter" and choose the wikipedia site you can see  pictures and info. I'm not sure the ones shown there have the record feature but I was loaned one that did record by the sleep clinic just to see if my c-pap was set on the right pressure. It's a good sign that your husband is not snoring. It is possible to snore without having sleep apnea but you cant get to the sleep apnea(period of not breathing) stage without snoring first.  Snoring is a partial blockage of the airway. Sleep apnea is a total blockage of the airway until low oxygen  triggers your brain and forces you to gasp for air.

Ed

[MooseMom]

Cordelia, why would they even think he has sleep apnea?  Do they routinely ask prospective donors if they snore or something?  What would lead them to investigate this?

[Cordelia]

I'm not sure. I wish I did know. I wasn't there with my husband to think of asking the questions. My husband never thinks to ask. Usually, I think to ask the questions after I'm gone, that's when the questions start racing through my mind, when it's too late.   

He had been overweight, still is to some degree and that could be why they are asking/investigating. It's really  hard to say. It could be just standard protocol at this hospital. Yet, they never told me I had to go to a clinic.   

[C904]

Thank you, everyone, for your hugs and advice     

That is an excellent idea about that test, Ed. I can forsee one problem with it, though. Here, in Canada, not all tests are covered under our medical plan. I have a hunching feeling that it likely would have to be out of the patient's pocket. It is worthwhile asking about it though, definitely, just to make sure. I have told my husband about this now and he knows and he said he would ask.

I should clarify, my husband does not have a diagnosis of sleep apnea. The clinic is only to rule out yay or nay if he actually has sleep apnea. At this point, we have no clue if he does or not. It is to rule out problems prior to going under anesthetic.

He does not snore anymore since he has lost a great deal of weight, so that is a good thing.   

I've been thinking the same thing, how would these people feel if it were them that they were being jerked around!? I totally have been thinking the same thing these days! I will keep you all posted     

I know your health system is different in Canada, but I don't foresee that much of a price difference if they give him the overnight pulse oximeter.  I worked in the industry that provided these tests and it is simple and cheap.  In the U.S. the test was at around $38.00 as of earlier this year and it was usually covered by insurance and out of pocket for patient usually only came into play with insurance deductibles.  I am not sure how this will translate to Canadian healthcare, but the test is easy and inexpensive.  The device that records all night is about 6 to 8 inches long and 4 inches wide and there are some models that go on your wrist that are smaller.  The devices have a on and off button and he will put his finger in a small fingertip probe and turn on the device and go to sleep.  He will be told to wear it for normal sleeping hours and to do your best to keep it on all night.  In the morning you turn it off and the device records the data by itself all night.  The doctors love the test as well as insurance companies and even Medicare loved it because it is easy and cheap and gives the doctor a lot of good info instead of shipping every patient to do a expensive sleep study at a overnight clinic.  When they download the data if they see anything that gives them concern they will order a overnight sleep study at a clinic.  As you have stated it is probably just a precaution and I can tell you that many doctors order them as a just in case because it goes back to the points of it is easy for all ages and the insurance companies don't give problems because it is cheap.

[Cordelia]

Hi C904, I will definitely tell my husband that and pass your info on to him!        Thank you for your suggestion, I'm always looking for advice and suggestions......someone may suggest/advise something that I never even knew existed or was aware of, and I thank you so much for your thoughtful insight!          

[kellyt]

I didn't read your entire post, but I'm going to, I promise!     But my husband was also bumped for tiny, and I mean tiny, little calcium granules in his kidneys (he had one in each).  The doctor was fighting for us and said that if he normall drinks alot of water they would wash out and there would be no problem, but the "committee" said no that he might possibly, someday, maybe get kidney stones.   We were both angry and disappointed, but after getting my kidney from my sis-in-law I was happy that my husband was not my donor.  Both of us recovering simultaneously would have been difficult.  Hang in there!

[Cordelia]

Hi Kelly,

Omg, I'm so sorry,        I feel your dissaointment and your pain. I have these days honestly been wondering the worst -case scenario...... What if? What if, they won't let him donate?   I have.........nobody else and will likely have to wait years for a cadaveric kidney. I've heard it can take up to 7 years to wait for a kidney.     

I'm very scared.   

My husband has now stopped all his vitamins so I hope within time, it will clear out of his system and bring his levels to a normal level. They told him his calcium  and oh, they forgot to tell him that his creatine was also "slightly" elevated above normal-not a lot, but "slightly" was the word used.

I'm starting to get very nervous now...........     

And, what if after awhile, he's stopped the vitamins now and what if a month or so from now, his levels are still slightly elevated, then what?!     

[monrein]

This is the very toughest time I think in the donation process because although it can seem as though the medical people are making you jump through all kinds of hoops that can feel unnecessary, the fact is that they have a huge and important responsibility to protect any and every donor from the possibility of their own problems in the near or distant future.  For me, this was enormously reassuring as I would have a tough time living with the idea that a donor's gift to me could become a huge liability to them.  The system is rigorous and for very good reason.  As disappointing as the whole process can turn out to be, it's the ONLY way to proceed with living donors and I think the team should always be very clear with people NOT to get their hopes pinned on a live donor...until that kidney is safely installed, anything could change the course of events and that's just the plain, hard truth.  A tough truth I know, when often we are desperate feeling and pinning hope on something is the thing that gets us through the day and the weeks. 

Cordelia, in the end, you wouldn't want both of you with kidney problems so as hard as this process is, try to keep coping the best you can and I hope that all will work out in the end.

[Cordelia]

I know, it's the plain hard truth. I understand what you're saying.

I know my husband would feel like he let me down. And, I'd feel like I let him down too in the sense of putting him through the whole testing process since January......it has taken so much of his time off work.....we do not live near the transplant hospital. There has been a lot of distance involved in the testing process-driving, taking time off work (lost wages)

I have no other family, I'm adopted and I have no biological family to help me. It's really scary thinking about all this stuff...........I just don't know. I had a lot of hopes up until the weekend, fidning out about the levels.....now there is so much uncertainity.

With the levels being slightly elevated, I'm hoping were just limited to taking the vitamins. I guess time will tell.

[MooseMom]

Monrein's post is very important.  I know that if I had a live donor and actually received a kidney, only to later find out that the donor ended up with health problems as a result of the donation, I would be devastated, and I would feel responsible.  That would be an emotional and psychological burden I KNOW I would not be able to live with.  So, that's where the transplant people and their hoops come into play.  The health of the donor is THEIR responsibility, not mine, not yours.  This is so that YOU won't have any guilt that you may feel if your donor is harmed.  While all of this creates a (hopefully) short term delay, it's better than living the rest of your life with the burden of guilt on your shoulders.

I know that your hopes have been pinned to your husband being a donor.  I understand what it feels like to have no one else to step up as a donor.  But don't let yourself believe that only blood relations can donate to you.  Do you or your husband have any friends who might be willing to be tested?

[Cordelia]

I understand, I do. Honestly, It's just hard not having anyone else as a back up. I have no friends who are willing to donate. I did last year, have one friend come forward, she spoke to her doctor and was highly advised not to donate. I dealt with that devastation too of having someone come forward and then have to back out.

I know in the long run it's for the best if that is what they say that's it not good to proceed so not to hurt either of us, it's just hard, the waiting and the wondering....in the short-run of things.

I sometimes think I would "deal" better/easier if I just knew what the case was.......it's the waiting, the wondering that is so hard.

I know, it's not carved in stone yet, either way, yes or no..... there is still a  ray of hope, and that is what I have to hang on to for now.

I keep praying and hoping his levels were only out of wack due to the vitamins. He will re-do the test in the next month or so to see if it has changed. We are both very curious to know if anything will change with having stopped the vitamins.

Thanks for letting me vent my frustrations. It's comforting to know there are people who do really understand, like you all here.     

[M3Riddler]

Cordelia,

I know it is very stressful not only going through the tests, but the anticipation for the results as well. One thing that I have learned over the many years of my illness is....Never expect to be contacted back with results etc.....  This happens all of the time. The transplant clinic has hundreds if not thousands of patients they follow.  Chances are that they did not even look at your husbands results until before they called you. Is this an excuse?....no, they should call you, but again, this rarely happens on time.
The best advice I can give you is do not rely on others, but take things into your own hands. You ( and your husband) have to be the advocate and take control by being in charge of his care.
This is not the first time that this is going to happen. Try to educate yourself as much as you can, not only about why your husbands kidneys failed, but also about all aspects of his condition.  Learn as much as you can about kidney transplantation. 

As I was saying, you need to be in control. Take charge by calling the transplant coordinator and get the results after any kind of testing has been done.  I have had 3 transplants and one thing I can say is that you have to watch everything / everyone like a hawk.  There have been times where I was given wrong medications, wrong doses / the wrong diagnosis etc...Lucky I was able to catch these errors that could have had a horrible outcome.  Please dont wait for someone else to call you or rely on the nures/coordinator/doctor or whoever else to come to you. Take charge before they get the chance. This is a life and a kidney we are talking about, not a cholesterol test or getting the results of a car that you took in for service. You have to be on top of everyone involved.  If you feel like you are being a pain, thats fine... so be it.

Finally, God willing the transplant does go through, anytime you have a creatinine or any blood tests to check the status of the kidney, by all means dont wait for them to call you....call them for results.  One other thing that is important is to ask to read your chart. This is something that many doctors do not do. It is much easier for them to come in and ask you something that going into your chart and reading what the last person wrote. There are going to be doctors changing orders that the previous doctor wrote and the communication is going to be horrible. Doctors do not like to question each other. They all want to do their own thing. You need to keep them together. Read your chart, correct the mistakes and do not be afraid to question anyone including the docs. If they do not like it, too bad.  Also, beware of interns and residents. Many are on a power trip and many think they know everything where they do not. Not to say that this is going to happen to you, but things you must be aware of.  If they are not performing up to standards, it is your right to fire them and ask for someone else to take over.  Write down the names of doctors that come in your room.  Sadly, you may not see the same doctor twice during your stay. This is why you must make sure the records are right.....

Let us know how things go!!!

///M3Riddler
www.nxstageusers.com

[kellyt]

My brother was also denied due to a slightly elevated count that was "slightly high" for my transplant clinic and hospital,  but was considered "safe" for other transplant clinics and hospitals in San Antonio.  After it was explained to me that he could possibly be in the early, early stages for kidney disease (because as my doctor pointed out it has to start somewhere and at some time) it made much more sense.  I have told him to have his urine checked yearly, so hopefully it never develops into anything.

Also, as for my husband, once the "committee" declines that is usually it (at least that's the way it is here), but my transplant doctor (who is also on the committee) allowed for my husband's urine and labs to be tested even further due to the fact that he was in such good health otherwise and he didn't feel the granules were a big issue.  They sent it out somewhere out of state and it took an additional two weeks.  We went on a cruise to get our minds off it because when we came back we knew we were either going to transplant or I was going to start dialysis.  They still declined him, but he has had no kidney stones or kidney problems since, or ever.  This was all in May and June 2008.

[Cordelia]

We thought we were keeping on top of things, checking in with these  people. Sometimes, to get a hold of someone is next to near impossible.   

On the other hand, here, where I'm from, the rule of thumb is usually if you don't hear back, the test is normal and there is nothing to worry about.

One thing that gets me riled is the fact that the doctor himself had the test results right in front of him and didn't say boo. Don't know how to explain that one.     

Well, it should be interesting to see how this will develip over the course of the next month. I'm supposed to go and see my doctor next month-possibly my husband too, if he ever gets the sleep apnea test.