How long is a long wait?

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long journey
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 12/23/2008 1:21 PM (GMT -7)   
I'm sitting here waiting for another paracentesis and maybe another thoracentesis as well. I've waiting in this same place about 50 times or more over the past few years. My husband has been on the list at SLU in St. Louis for almost 4 years. Until this year, his score has hovered in the 17-19 range. Since June, he has been hospitalized 7 times. Each time his score soared as high as 27, but then stabilized and we returned to a lower score and returned home. Recently he has developed real problems with pulmonary hypertension. He has trouble breathing due to fluid in the pleural area. Last week, they drained 2.5 liters from this pleural cavity. His labs today produce a MELD score of only 20. We've been told at SLU that we need to be in the mid 20s, but to keep a bag packed because we can get a call at any time.

That "any time" status can be a loooooong time. I retired from teaching in July because my husband could no longer stay at home by himself. I look at him and see a rapid downward spiral since June. He has deteriorated so quickly since then, but the MELD refuses to stay higher than 20 or 21 for very long. Each time we see the doctors, they say, "Well, your bilirubin and INR are up, but your creatinine isn't high enough to raise your score."

I don't really know where I'm going with this, but it seems to me that we're bringing the average wait number in the statistics WAY DOWN with our contribution to the data. Four years????????

I read in one of the contributor's comments that pulmonary hypertension increases the score? Is this true? Has anyone been told this? I'm afraid he's going to get so sick in other ways that he will not be a good candidate for the transplant. The wait is creating a less and less viable candidate.

Thoughts, anyone?

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 12/23/2008 3:34 PM (GMT -7)   
Long, I am sorry to hear of your troubles. Yes the wait can be long and seem longer than it is, I feel like Doug has been waiting his whole life. He was diagnosed 12/2000, was listed 2001. He did very well till this year, we have seen a meld of 16 up to 30. He gets tapped every other friday any where from 2.5 to 10 liters. He hasnt driven since march and cant walk more than 30 feet, sleeps more than awake but we keep hoping soon..... and when is soon going to be. All you can do is hold on and hope! I no longer tell him his meld scores and just remind to just get through today and dont borrow from tomorrow.
Sue
When I started counting my blessings my whole world turned around.


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/23/2008 4:43 PM (GMT -7)   
Welcome to the forum Long Journey. My husband also goes to SLU. He was diagnosed with cirrhosis over 2 years ago and has not been listed yet. Until last month his complications were minimal compared to many others. His Meld score had remained between 9 and 11. Last month just before Thanksgiving he suffered a massive bleed in his stomach. He recovered and has been scheduled for a TIPS procedure on January 12. His Meld score jumped to 17 after the bleed. We were told that if his Meld score remained 15 or above they would then try to get him listed. They expect his Meld score to drop after the procedure. I'm not sure what to wish for. I would really like to see him listed and at the same time afraid for his Meld score to raise.

I have heard that there are other things that are taken into consideration other than the Meld score, but I am not sure what. I'm sorry that I can't answer your question. I know this must be very frustrating for you. I will include you and your husband in my prayers.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/23/2008 5:15 PM (GMT -7)   

Hi, LJ.  I just wanted to welcome you to the forum.  As you can see from the replies you've already received, you do have company with the long waiting.  Is there any possibility of a live donor transplant, or is that not done at SLU or not an option?  I know that Mayo Transplant Centers have the shortest wait in the country--generally 2 mos.--but not everyone has access to Mayo.

Hang in there!  You will get a lot of support here!


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


long journey
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 12/23/2008 5:20 PM (GMT -7)   
Thank you for your responses. It helps to know others understand what I'm feeling. Today, he had 1.5 liters removed from pleural and 4.5 liters from the abdomen. I wonder if this means regular thoracenteses? In 6 days, he accumulated 1.5 liters around his lung.

I've have learned several new bits of information reading this forum. Thanks to everyone who shares. I've always believed that information is power......to whatever degree. It helps to know what questions to ask the doctors.

Wishing everyone a tranquil week...

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/23/2008 9:18 PM (GMT -7)   
LJ, I absolutely agree with you about knowledge being power.  You might want to ask the hepatologist if your husband is now considered to have pulmonary hypertension and if his problems with the pleural fluid could move him up on the transplant list.  I imagine these are things you are wondering, so you may as well ask.  Is the entire transplant team aware of the need for thoracentesis as well as the paracentesis?  While more clinics and hospitals are moving towards paperless medical records where all info can be accessed in the computer, not all are 100% there yet, so don't assume that the transplant team members are aware of the fluid removals every time they are done, particularly if they are done in the ER.  Of course, I realize that someone has to order them, but just be sure that all bases are covered.  wink
Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


long journey
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 12/23/2008 9:34 PM (GMT -7)   
Hep93 - good point. I can't be certain who knows what in this process. We live 230 miles from SLU (transplant location). Our local doctor orders the weekly procedures, and so far he has been very good about keeping our doctor at SLU informed. We usually see the doctor at SLU every 4-6 weeks. We have had to reschedule our last two appointments because of icy roads. Our next appointment is not until Feb. I will make sure to verify that our local doctor has discussed this recent development of pulmonary hypertension with SLU. Also, I talk to our transplant coordinator from time to time and I can give her a call.

i guess it' wise to never assume anything. Thanks for the suggestion.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/24/2008 12:28 PM (GMT -7)   
You're welcome, LJ.
 
"i guess it' wise to never assume anything."
 
And that's an understatement, as many here can tell you!  smilewinkgrin
 
Try to have a peaceful holiday.
Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


windhover
Regular Member


Date Joined Oct 2008
Total Posts : 28
   Posted 12/28/2008 12:22 AM (GMT -7)   
hi
 You  may  have  refered  to one of my posts..If he  now   has pilmanary hypertension  and  is  having  to  get thoracentesis,,,,he  may have   a process called hepatopumanary syndrome. A diagnoses of hps  will move you  to the  list to  get  a liver  in  3 months....Ask  your  drs  to test  for  hps.............its  worth  a try...
 

long journey
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 1/7/2009 12:15 PM (GMT -7)   
Thanks for writing, windhover. Your words launched quite a flurry of activity for us. My husband fell while I was helping him walk to the bathroom, cracking two ribs. He was hospitalized for one week here at home, and I asked our doctor here about your information regarding the pulmonary complication. He was unaware of the impact it could have on the MELD score. I asked him to call the doctors at the transplant hospital to inquire about it. He was told that, indeed, this can positively affect the score, so we were transferred to St. Louis that day. When we saw one of the doctors there, he acted as if he were unsure about why we were there, saying that they could not to anything more than what they were doing at our hometown hospital. I mentioned pulmonary hypertension (perhaps the incorrect terminology), and he seemed confused. I asked him to call the doctor who had conferred with our home doctor for clarification. He came back in and said that the "team" would meet to vote on whether or not extra points would be added to the MELD to address the cumulative effects of his pulmonary and encephalopathic complications to his viability as a transplant candidate.

After three days, we were sent home to wait.......again. Our doctor at home was as frustrated as we were. I am waiting on a return call from him and have sent a list of questions to our transplant coordinator in St. Louis. At this point, we are very frustrated, and I'm being pressured from family members and our doctor to place my husband in a skilled nursing care facility. I just can't do it yet.

I consider myself to be a somewhat educated person, but if not for your forum, I feel I would never have known about the "special" circumstances that can affect the MELD. I feel like I have to investigate on my own to discover a way to get a liver for my husband! Okay, that being said, I can calm down now and take a deep breath. I know I'm not alone in this feeling, and I've asked to have more communication with our pre-transplant coordinator. It helps to know what questions to ask, so thanks again, windhover.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/7/2009 1:51 PM (GMT -7)   

LJ, thanks for checking in and bringing us up to date.  I'm so sorry about your hubby's accident, but think you are on the right track.  Just be persistent in doing whatever you have to to positively affect that MELD score!

Since the advent of HMOs, patients have had to become more proactive in their health management.  This is especially true of liver patients, regardless of insurance.

Hang in there!


hep93
Forum moderator - Hepatitis


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 1/7/2009 10:19 PM (GMT -7)   

LJ

I just wanted to tell you I know exactly how you feel.  Sometimes I think my head is going to explode from information.  Also every time I think I have learned everything there is to know about this horrid disease something else pops up.  I too was told that fluid around the lungs will give you exta points and also low sodium.  I really beleive that when that committee meets they can put in for more point for whatever.  I do not have proof but I really think that is what happens.  I can not immagine how you are holding up.  I know how I am holding up and my journey has been only 2 yrs.  I don't know if I can make it another two year.  And then there is my husband.  He can barely walk due to fluid in his legs.  They are so big the fluid comes through the skin.  Its so painful.  I'm not going to go on with my problems because you have enough of your own.  I will pray for your husband.

 

JoAnn


long journey
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 1/8/2009 9:49 AM (GMT -7)   
It's amazing what can you can learn when you become a squeaky wheel. I just felt we had been through enough! I sat down and wrote to our coordinator and explained our frustration at the MELD score not reflecting how sick my husband is. I told her that I had learned more on this forum about possible exceptions to the UNOS rules for patients with atypical scores than I had in any of the literature. We have been told by doctors that my husband's case is unusual in that his score has been essentially stuck in the same range for so long. So I asked some pretty forward questions and found out that the pulmonary complication that was diagnosed 3 months ago was not even in his medical file in the transplant office. I know our doctor here has faxed and mailed information, and we have even physically carried it with us when we have had visits there. I realize some information can fall through the cracks, but like hep93 said, "Don't assume anything in this process. Ask questions." The bottom line is that the process is not serving my husband like it is supposed to serve patients.

As a result of my email correspondence with our coordinator, I received a phone call the same day and a pulmonary test is being scheduled there for my husband within a few days. The doctor and coordinator are meeting to write a letter appealing for more points based on the pulmonary complication. In addition, I learned that if the patient has been hospitalized a number of times (?) during the past 6 months, extra points can be granted. Didn't know that either! My husband has been hospitalized 5 times here at home in the past 6 months and has been transferred to the transplant hospital 4 times from the hospital here.

I feel somewhat empowered again and a part of the process to move this forward. I told our coordinator that we are separated by 230 miles from the hospital there but I felt a much greater distance in the communication and exchange of information. Maybe this will finally give us the break we need.

While I was on a roll, I decided to pursue some in-home nursing care, and our doctor here agreed. Could 2009 be our year? I really hope so. Thanks to everyone who contributes to this forum. Why haven't I been here before now?

5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 1/8/2009 10:08 AM (GMT -7)   

Dear Long Journey

My heart goes out to you!  I can't add to the great info you've been given and have given us, but I must concur that the more you know, the more you can help your husband.   We think that everything is "being taken care of" but that's not always the case.   Now you're on to how some of it works.   I hope your long journey speeds up a little now.    

Joan


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/8/2009 10:36 AM (GMT -7)   

LJ, you go, gal!  I am proud of you for being a "squeaky wheel."  You are doing it for a good cause--to save your husband's life--not some trivial thing.  Keep up the good work and I think it will make a difference.

Hugs,


hep93
Forum moderator - Hepatitis


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 1/8/2009 11:05 AM (GMT -7)   

LJ

I just learned something from you.  I did not know that hospital stays had anything to do with MELD.  I have a feeling there are a lot of things we DON'T know.  Speaking of that does anyone have the problmes with their legs being really HOT and RED.  His swelling if finally going down but his legs are still really hot and red.  Since he has gotten rid of about 30 lbs he can at least walk and there are no NEW seeping sores.  But at the sight of one of the sores that is scabbing over he has stabbing pains.  They did give him high doses of antibiotics in the hospital last week.  I'm just curious if anyone has had this problem.  Thank you all.

 

JoAnn


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/8/2009 3:57 PM (GMT -7)   
JoAnn, at one point I had red calves with a yellowish tone.  This was following hip replacement, though, and I was told that it was a circulatory problem with blood pooling in my calves.  It has nearly disappeared, now that I'm able to walk more.  It could be that since your husband was unable to walk much, he has this "pooling."  However, if the skin feels hotter than skin elsewhere on his body, I would be concerned about the possibility of cellulitis.  Since he had massive antibiotics last week, I doubt this is the case.  However, you may want to call his hepatologist about it.

hep93
Forum moderator - Hepatitis


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 1/8/2009 4:31 PM (GMT -7)   

Hep93

That is the word I was looking for "Cellulitis"  They talked about that in the hospital.  I need to read up on that because I think that is what he has.  His legs are really HOT to touch. Even though the swelling is going down there is still a lot of swelling.  Is that something dangerous.  I did call the GI office today but they have not returned the call yet.  Also they did find some blood in his stool so now they want to do a colonoscopy.  That really worries me.  Could it be the disease or something else!  I'm tired today.  My brothers Dr. just called and they had put him on a resperator.  He has been in the hospital for almost three months.  He's a quad and it just seems like they get one thing going right and something else happens.  They had to do a para on him and hit a vessel.  Didn't know it right away, that is until his Hct was a 15.  Then they gave him 4 units of blood.  Which caused some kind of reaction with his breathing.  I'm feeling so bad because how horrible would it be to think you are going to die and be all alone.  I am all he has and I haven't had the time to be there for him.  I guess I'm having a pitty party right now.  I will research the Cellulitis.  Thanks

JoAnn


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 1/8/2009 5:07 PM (GMT -7)   
JoAnn, It really does sound like cellulitis. Red and Hot is usually the indicator. There doesn't have to be any visible sores. Antibiotic theraphy is normally 2-3 weeks. This concerned me when I was reading your post.
Teresa

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 1/8/2009 6:38 PM (GMT -7)   

Teresa

I am concerned also.  He was in the hospital all last week and they gave him antibiotics IV.  He has been out of the hospital since last Fri.  I would think his legs would be better.  We have managed to get the swelling down (somewhat) but his legs are still really red and I can't even touch them they hurt.  I don't want to subject him to ER tonight so I will call early tomorrow. My concern is if the antibiotics they gave him in the hospital did NOT work.  What do they do now.  Also is that going to hurt his chances for the transplant.

JoAnn


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 1/8/2009 7:37 PM (GMT -7)   
Thanks for the info Long Journey. It seems that there are things about the MELD score that are kept from the patients. I am so thankful for the information you have provided. I'll be praying that your husband is moved up the list and receives his transplant soon.

JoAnn, My husband's legs were swollen pretty bad for awhile. They developed the hot red areas that you are talking about. He went to the doctor and was prescribed antibiotics. I think it took a couple weeks for them to clear up. I am so sorry that Jerry is going through so much. I know it must be so hard for you. I continue to pray for you both.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/8/2009 9:50 PM (GMT -7)   

JoAnn, yes cellulitis is serious.  Try to get hubby seen tomorrow!  He may need a different type of antibiotic than he was getting.  I have had cellulitis once, unrelated to my liver disease.  I got bitten by a brown recluse and my armed swelled up to 3 x its normal size and turned dark red.  They tried all kinds of IV antibiotics until they finally got a combination that worked.  I nearly lost my arm.  Enough said.  It was weird, though, because when the swelling went down the skin peeled off just like a sunburn.

If there is no change in the morning, you should probably take him to the ER.  Also, have you taken his temp?



hep93
Forum moderator - Hepatitis


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 1/8/2009 10:10 PM (GMT -7)   
hep93
No I haven't taken his temp.  But they did all last week and there was no temp.  His feet are peeling now that the swelling is going down.  One ankle is almost normal but there is still a lot of swelling.  It feels real hot.  I'm wondering if the antibiotics they gave him in the hospital is still working since they were IV.  I am calling the Dr. in the AM to have him seen.  I also have the issues with my brother to deal with.  I'm feeling like a looser tonight because he has been in the hospital alone and I know he has been scared.  I should have not been there for him.  So I'm going to the hospital tomorrow to sit with him a while.  I sure hope he knows I'm there.
Thanks for the info.
 
JoAnn

5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 1/9/2009 10:07 AM (GMT -7)   
Dear Joann,
 
I don't know why it seems that when we're at our limit, something else comes up.   You will manage to care for Jerry and see your brother, but it must seem like everything is piling up.   I have been reading your posts for many months now and I have learned so much from you.    I guess I just wanted to thank you for that and for being human (something I have to remind myself that we all are and not the super humans we try to be).   
 
Take care of yourself too in all of this.   It's so easy to forget that we need TLC too.
 
Sincerely,
 
Joan

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/9/2009 12:30 PM (GMT -7)   

JoAnn, you are far from a loser.  You are a very strong and giving person.  We have an expression in AA that I like:  "Don't should on yourself."  smilewinkgrin

It has to seem like a momentous load, between your husband and your brother.  You do what you can and that is enough.  And as Joan said, don't forget to take care of YOU.

Hugs,


hep93
Forum moderator - Hepatitis

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