I have reached the end of my patience, time to put on the boxing gloves

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Regular Member

Date Joined Mar 2008
Total Posts : 47
   Posted 4/29/2008 6:45 PM (GMT -6)   
This is the email conversation I have had with our coordinator. Most of you already know the circumstances and what I have been going thru. The Coordinator has out and out LIED!! I am furious to say the least.... OMG Call me a LIAR???? I am fit to be tied. I reversed the order so that the first emails were at the top. I cc'd the email to the other coordinators as she did as well as to the main transplant Coordinator. I read all of this to my husband before I sent it, he was fine with that, now that he has thought about it a bit he is afraid that they will try to falsify records to show that his MELD is different than what we were told or that they sent something they hadnt to make us look bad. Sad, It took the Psych's assistant to get our Coordinator to so much as email me much less anything else.

From: S**ay, April 29, 2008 6:03 AM
To: M**er, D***ia L.
Subject: MELD


This is Therese ****ber, Kenneth Fa****ber's wife.
How often does blood need to be drawn for the MELD?
I am trying to get an appointment now for the Transplant Psychiatrist, She is booked until mid June. Once we have that and the lab work you mentioned done, is there anything else that needs to be done to get on the transplant list? How soon after we complete the psych evaluation and labs will we know if he has made it to the list or is eligible for the transplant list? What exactly are you looking for with the new labs and is it anything that could potentially prevent him from getting listed? To date he has had 31 + tubes of blood taken, I would think that would cover every possible test imaginable unless it is just to update some results.

His Inguinial Hernia has now spread down into his scrotum as well as remaining in the original area and frequently prevents him from having a bowel movement for several days at a time, he has to rely on Magnesium Citrate to clear the blockage, 2 bottles at a time and it takes about 8 hours to kick in and it is only getting worse. Yes it can be reduced with pressure however as soon as that pressure is removed the hernia pops right back out. His inability to have a bowel movement for several days at a time is what concerns me the most since the ammonias are quickly building during this time. He drinks large amounts of Lactulose but that does not help him to move, his hernia just continues to get larger until he finally drinks the magnesium.

How often should he have a blood draw to check his ammonia levels?

Therese Fa****er

---- Original Message -----
From: M**er, D**nia L.
To: 'Shandra'
Cc:Ca**at, Ra**el G. ; Co**k, Sha**on M. ; ****uels, W***a L.
Sent: Tuesday, April 29, 2008 3:52 PM
Subject: RE: MELD

He will have to be represented after the appointment with Dr. P***e. His MELD is 10, and currently he is not due for any repeat blood work. We do not check ammonia levels. I will inform the doctors regarding the problems with his hernia.

D***ia L. Mi***er, MS, BSN, RN

Liver Transplant Coordinator

Transplant Service

6**0 Mai**eet Suite 1505

, Texas 70

Ph: 83***55**893

Fax: 83*-3**5-8384

There seems to be some confusion somewhere. I had called on 4/11 attempting to get a MELD, you were out of your office and would not return until monday, I left a voice mail and did not hear anything so I called again 4 times on 4/14 to various numbers (04/14/2008 9:16AM 8**-35*-8**3 , 9:17AM 8**-35*-8**3 ,9:18AM 8**-35*-8**3 9:20AM 8**-35*-8**3) within the transplant office and left voicemails asking for his meld score.The last time I called your number it said you would not return until late afternoon monday. I called tuesday and the recording said you would not be back until after 2. I spoke with someone ( I think it was donna but am not positive) from your office on 04/15/2008 3:18PM 8**-35*-8**3 while my husband was waiting to have his MRI, She told me that his MELD was 20, that the case had been presented for review that morning and that they needed the results from Dr. Fe**ali, more labs and the psych evaluation, that the information would be in the letter you sent us. Those were the only things holding him back from getting on the list. We were at Dr. Fe**ali's to get the results on the nuclear test that day after the MRI, We were told Kenny's MELD while we were going from 1 appt to the next, that was why Dr. Fe**ali got Kenny in for a heart cath so fast. I spoke with Connie at Dr. P**es office today and she was told that his MELD is a 10. This is the first time we have heard that. She also said that you said you had sent us a letter with his MELD score and instructions to make an appointment. We have not received the first piece of mail from you or anyone else with the transplant team with the exception of the Nutritional Information Pamphlet that was mailed to us from the Dietitian.
This problem with his hernia is not new, It was there when we initially went to the Hepatic Dr, and when we came in for initial eval, the dr's know about it. I had called and spoke with a nurse on 4/18 because he had not had a bowel movement in several days even with excessive lactulose. She pulled or reviewed his file, told him to drink more lactulose or Magnesium Citrate.
I am getting frustrated. I call and do not always get a return call, I understand the office is busy. I am getting conflicting information from different people, I have spoken with 3 different people in that office now and have had something different said each time.
I am getting conflicting information from you, Yesterday you said that labs were needed to make sure he doesnt have HEP C, well we know he has HEP C, You then said that you were looking at the wrong thing and that he had other labs that were needed. I asked if they could be done up here, you said no, they needed to be done down there in case there were send outs, it would just be easier to do them there and that you would schedule them for the same day that he goes to see Dr. P**e. Now you are saying that he does not need any more Labs.

I need to know exactly what is going on with my husbands health, what steps we are to take next, any appointments or other criteria that must be fulfilled. Our most urgent need at this point is to know his MELD score and if he is eligible for the transplant list. If he is eligible for the list we can get started with the classes and other things that may be needed. If he is not eligible for the list there is no sense in going to the transplant education classes. I do not want to find out at the last minute that there are more things that are needed and not have time to take care of them.
Please understand my frustration, this is my husbands life we are talking about and extremely important to me. I understand that there are many waiting for the same thing we are but we still need to be kept in the loop.
Therese Fa**er

Regular Member

Date Joined Mar 2008
Total Posts : 202
   Posted 4/29/2008 7:14 PM (GMT -6)   
Hi Therese,
I can't begin to imagine your frustration. I hope that this coordinator gets it together to adequately serve your needs or that you can get another one. Since the blood tests that determine the MELD score are done at a lab and not under the coordinator's control, I don't think that you need to worry about falsification of the actual test results.
Getting those results directly from the lab should not be a problem since your husband's records are completely open to him, and should be to you depending on your state's laws and what your rights are as the spouse. In any event, your husband signing the proper 'power of' forms can guarantee that you have total access to them on his behalf.
If the relationship with the coordinator is not salvageable (and I hope that it is salvageable), I am sure that you will go up the ladder of authority to whomever it takes to get what you need.
I know that this post is not much help but I cannot stay quiet when it appears that someone may think that their job is only for them and not for you. I had an IRS agent who pulled that on me so I sued the IRS in Federal Court acting as my own attorney (no, I have no legal background) and I made them settle on April 13th so their loss would be on page 1 on April 15th.
So, I encourage you to lace those boxing gloves tightly and fight for what you need. I think you know that the members of this forum will cheer you on and give whatever support and advice and resources you need.
I'm hoping that the coordinator gets some sense so you won't need beat anyone up, but if push comes to shove . . .
Be well, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.

Regular Member

Date Joined Nov 2007
Total Posts : 445
   Posted 4/29/2008 10:22 PM (GMT -6)   

Hi Therese  I'm sure you don't even want to hear this but we had almost the same thing happen trying to get my husband on the list.  First it was the physiciatrist.  Then once we got through her it was the head Dr.  I could not believe what he wrote in a report about my husband.  Then we had problems with the insurance company.  A new case manager tryed to prove himself first day on the job by denying him benifits.  In the end the our coordinator ended up going to bat for us.  We started the process last Sept.  Finally got listed last month.  Don't give up.  First of all get all of his labs.  I found a web site that will calculate his MELD score for you.  My husbands hernia is so bad he for the last few days he has had to hold it in with one hand.  I also would give him a dose of lactalose ever hour until his amonia went down.  Sometimes it would take 4 hrs but it would start coming down.  Now that he takes Neomycin for 14 day and off for 14 day.  That has made all the difference in the world.  He looks like dead man walking but at least he is still walking.  He has lost all of his muscle mass from being drained so much.  But he's back to work and on the list.  So just don't give up.  Once your husband is on the list things will settle down for you I hope.  They did for me.  I think because it was the first positive thing to happen in so long.  I just felt some hope.  You will too.  Hang in there.


OH the web site is www.thedrugmonitor.com

Regular Member

Date Joined Mar 2008
Total Posts : 47
   Posted 4/29/2008 10:46 PM (GMT -6)   
thanks for the kind words, shoot if things slow down any more we will be walking backwards lol The truss has done wonders for my husbands mobility but it also forced the hernia south, so he has to hold his nads and belly while walking. I refuse to give up, this lady, the coordinator basically told the psych's assistant that I LIED. Now I will tolerate alot of things as most folks in this neck of the woods will, but callin a Texan an out and out liar, well, thems fightin words and I aint fixin ta belly up. ( Had ta let the texan show thru a bit hehe) Anyways, I am awaiting the blast from the coordinator tomorrow.
Obladi Oblada

Pink Grandma
Veteran Member

Date Joined Nov 2006
Total Posts : 2445
   Posted 4/29/2008 11:47 PM (GMT -6)   
Hello Mischa ,
Hope you're waiting with both six-shooters ready. ( Just kidding.)

But really my husband and I went through some of the same kind of stuff also. His coordinator
wouldn't call back either. Me thinks that they have too many patients to try to keep
track of. Ask her how many other patients she's coordinating for right now.
It must be a very high stress job. I wouldn't want it for any amount of money.

Hang in there and stay focused on the best course of action to get your husband on
the list. But don't be afraid to go above her head if need be.

Does the transplant hospital have a patient ombudsman or advocate? If so talk to that person
about your concerns. Even though you are mad as heck.....be professional with whom ever
you talk to. They are more apt to listen to a calm determined person, than to irate mad woman.

Good luck and take care........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

Regular Member

Date Joined Aug 2006
Total Posts : 469
   Posted 4/30/2008 6:04 AM (GMT -6)   

I am so sorry that you are having to deal with all this conflicting information. It is so difficult to deal with others look at this "as a job" rather than someone's life. It is also very disheartening for me to know as this is the process I have to look forward too. Will keep the both of you in my thoughts and prayers.

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