Sterile Talc for pleural effusions

My mom is at the point of being drained every 4 days, even AFTER having the TIPS procedure 2 times. She is only getting 1 1/2 days of relief after a thoro...it's pretty frustrating.

I'm at the point of looking for something else to try and bandaid this problem until we get a new liver.

TIA

Margaret

Margaret,

I don’t mean to scare you, but this is precisely the reason I met the Director of Transplant Surgery at Florida Hospital.  My husband had pleural effusion on the right side of his chest.  He had an accident in October and I learned that his right lung was collapsed.  They drew 3 ¾ liters of fluid off him.  Then he was admitted to the hospital in November where they drained 4 ½ liters of fluid.  They then put a chest tube in him and within 6 days, they drained another 10 liters of fluid via this chest tube.  He was so dry he went into hepatic coma.

I had an absolute fit.  I had done the same research as you have.  The procedure you are referring to is called Thoracoscopic Talc Pleurodeses.  It made sense to have the thoracic surgery with aerosolized talc.  I figured that if they would stop the acites fluid from getting into the chest cavity, the breathing difficulties would be resolved and we could just carry-on with the normal cirrhosis issues.

With this knowledge, I exploded on the ICU.  I demanded to see the pulmonary doctors and demanded a consultation with a thoracic surgeon.  After chewing out more than 3 doctors, in walked the Director of Transplantation.  He was arrogant and insisted I not allow my husband to have the procedure done.  However, he seemed unwilling to explain why.  We got into one hellacious argument.  He finally explained that it would cause liver deterioration and prevent him from getting a transplant.  He said he had a man upstairs that was dying from the very same procedure.  He did agree to have the chest tube removed.  With saline fluids, my husband came out of the coma within 3 hours.

I did get my consultation with the thoracic surgeon.  He admitted that I had received good advice.  The recovery period for the talc procedure was up to 15 days.  The scaring within the chest cavity can be severe and prevent ANY future surgery, including transplant surgery.  I did not find any information on the Internet that discussed the aftermath of the talc procedure.

All I can say is that you really need to understand exactly what the risks are.  By all means, demand answers.  The Director of Transplantation admitted that I saved my husband’s life by my outburst.  The pulmonary doctors had all but given up on him.  Had I not spoke up, he would have slipped away.  I was fortunate that the Transplant Director accepted my challenge to make my husband better.  He received a liver transplant on January 21^st and continues in his recovery.

I hope this helps.  Best of luck to you.  You will be in my prayers.

Penny

Margaret,

The “doctor” watch is probably one of the most frustrating experiences when a loved one is in the hospital.  Some doctors come in the morning, some in the afternoon, the rest pop in at all different hours.  If you miss them, you have to wait until the next day. 

I ended up having someone that I could count on in the room with my husband 24/7.  He was hospitalized a total of around 75 days.  It was tough, but I had great family support.  I would get so angry when I would run down to the cafeteria to grab a sandwich (and bring it back to the room) only to find out that a doctor had already visited and left.  I swore the room was under surveillance!   

It got better.  They realized that if they didn’t speak with me when they visited, I would run them down on the floor.  When one did come in the room, I learned to walk behind them and shut the door.  Then I would block the hallway to the door until all of my questions were answered. 

Something else to consider . . . the fact that your Mom was admitted for pleural effusion means that she is under the care of the pulmonary doctors.  She is probably seeing a hepatologist as well, but understand that the pulmonary doctors are calling the shots.  Harvey’s hepatologist didn’t have the backbone to stand up to the pulmonary doctors.  He agreed with me that the chest tube was not helping, but he wasn’t about to tell the other doctors how to manage his course of care.  It was the Director of Transplants that started calling the shots after my outburst.  I have the utmost respect for him now.

What sort of liver disease does your Mother have?  Is she on the transplant list?  What is her MELD score?  How many people with her blood type are on the transplant list at your center? 

Keep the faith, you will be amazed at how much the human body can endure.  My husband told me on many occasions that he wasn’t going to make it.  I would remind him of how far he’s come and not to give up. 

Penny

Margaret,

I know you must be pulling your hair out.  If I had to chose one of the options you mentioned, I would go with the least invasive; 2. Check the diaphragm for perforations.  If there are perforations over 2mm, these can be stapled or sutured orthoscopically. 

You mentioned 40 individuals with a similar MELD score range . . . don’t forget to filter the list down to blood type.  Then see how many individuals remain on your list.  Also, make sure you are looking at Candidates not to include Registered.  People are put on and pulled off the lists all the time depending on their condition.

I wish I had more time, but I really need to turn in.  I’ve gotta get an early start at work tomorrow.

You are in my thoughts and prayers.  I will check back soon.

Penny