AIH- PBC update on my wife

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Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 10/16/2009 7:08 AM (GMT -7)   
I haven't posted in a while, just haven't had the time or energy. On Monday the 5th, after checking her blood pressure and seeing it to be 80/33, I convinced my wife to let me take her to the ER. Once we arrived and they drew blood, her hemoglobin was 6.4. She was transferred to ICU where she remained until Thursday evening. She was scoped from top to bottom and no source of a bleed was found, although she does have varices in her upper stomach. She was released on Friday after receiving her 4th unit of blood. After the 4th unit her hemoglobin was still only 8.9. The  Internist at the hospital, after reviewing her blood-work during her stay, determined her to also have an adrenal deficiency and started her on 25 mg of hydrocortisone twice daily, with a recommendation that she find an endoctronologist to evaluate her adrenal problem.  She weighed 149 when I took her to the ER and upon her release after a week of them pumping fluids into her via two IV's,  she now weighs 173, and of course her abdomen is very  distented. We saw her gastro doc this past Monday and he doubled her lasix and and aldactone to twice daily instead of once in the morning. He says he doesn't want to take the risk of draining her abdomen again at this time, and wants to see if she can eliminate the fluids via her kidneys and urine. He also ordered blood work to be done in a week to check her kidney function. She saw her hepotoligist this past Wednesday and she too ordered blood work to re-check her MELD score. She had been at 13 since this past February, however the hospital doctor told me it had gone up to 16 while she was in ICU.  Her appetite seems to be a little better after being at home, however she still doesn't have the energy to stay up for long periods, instead she prefers to just lay in bed and sleep. None of the doctors have given me a really good answer regarding her blood loss, other than all of her problems relate  to her liver disease. The doctors again remind us that she will not go up on the list until her MELD score is in the mid 20's. We are both just exhausted trying to cope with her disease, prescriptions, doctors, hospitals, medical bills, etc. I am trying to find an endoctronologist, but can't find one in her insurance group that will accept new patients. We have both worked all our lives, however we are running out of vacation I am so glad that I found this forum, now I can understand  that we are alone dealing with  this terrible disease.

Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 10/16/2009 9:33 AM (GMT -7)   
I meant to say that we are NOT alone, having found this forum. We have both worked all our lives in government service,  and now each of us have about run out of sick and vacation time. My wife will retire the end of this month and I will try to make it to January before calling it quits.  It's a full time job being her care giver, so I will surely stay busy once I hang it up.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/16/2009 10:31 AM (GMT -7)   

Charlie, thank you for the update.  I'm glad to hear that your wife is now back at home.  It really is a good thing that you are able to retire soon.  As you said, being a caretaker for someone with major health problems is a full time job.  Incidentally, the term for an endocrine specialist is endocrinologist (no "t" after the "c.")  You had me thrown there for a second.

Is your wife currently being seen at a transplant center and has she been listed?  (Forgive me if you mentioned this in previous posts, but with so many new members it's hard to remember everyone's details.)

Sleeping/fatigue is normal for anyone with liver disease.  I am not end-stage, but still require about 12 hours of sleep to be able to get anything done...and could sleep longer if I let myself.

Our thoughts are with you and your wife.  Please continue to keep us posted.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 10/17/2009 6:25 AM (GMT -7)   
Sorry about the spelling error, I try to google most medical terms to make sure I'm spelling them correctly, but must have missed this word. Yes she is on the transplant list at the Liver Institute located at Methodist Hospital in Dallas, Tx. It's just so hard to realize that her health has to get so much worse before she will even be considered for a transplant. We both know two people in our area who have had successful transplants and are working and feeling well, she would love to regain her health like they have. She is just heart broken at being forced to retire, but fortunately she vested in a system where she can retire and retain her medical insurance coverage. I try to tell her that we are both fortunate to have medical insurance and retirement benefits, but at 59, she doesn't want to stop working, but understands that she just can't make a 5 day work week without running out of gas mid-week at best. She, like you requires at least 10 hrs of sleep, and at times can sleep both day and night if I don't wake her to eat and take her medicine. I believe the steriods are beginning to work, as her appetite have vastly improved and she seems to have more energy. Her blood pressure has remained  at normal levels for the past week for a change, so that's something to be thankful for. I give her a "procrit" injection once a week in addition to all her other medications to help stabilize her somewhat. It's just so hard trying to work with so many different physicians, who sometimes give conflicting advice that is hard to understand. Her health insurance provider has assigned her an RN who has been a tremendous help in educating me as how to best take care of her and manage this disease. It's just been a rocky road so far and I know this is just the beginning. This time last year she had no symptoms, but after the 1st of the year, it's all been downhill. Thanks for your reply.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/17/2009 11:45 AM (GMT -7)   

I understand your frustration.  You have a lot of company here with that.  Everything is based on the MELD score instead of how the person is actually feeling.  There are some events/diagnoses that will raise the score...but of course the patient is desperately ill, too.

I had to apply for SS Disability at 60.   I had only been able to work P/T since '93.   It took them 2 yrs. to approve me.  Meanwhile, my aunt supported me for over a year.  I had to return to work the 6 mos. or so before I was approved, as she didn't think I would ever be approved, and it was incredibly difficult.   Between the fatigue and pain, my focus simply wasn't there.  Your wife is indeed fortunate to have medical insurance that will continue.  Has she applied for SS Disability?  Since she is a transplant patient, she most certainly would be approved.  I understand that end-stage patients are now fast-tracked, too.  Quoting from Child4's recent post regarding this:

" I was told from a financial advocate that on SSD applications if the individual that is applying is terminally ill, to put in the comments section at the end of the application "This person is a Teri case", and it usually gets the application processed more quickly.  They will probably request a letter from the MD stating they have a terminal conditon."

I was not picking on you for your spelling, but feel it's important for medical terms to be spelled correctly to aid research and facilitate communication with medical personnel.  I had a topic about correct medical term spellings.  I will try to find it and bump it to the first page.
 
I'm glad that you found us.  You will get so much support and information here!  Please do keep us updated, and tell your wife that we are thinking of her and praying for her.
 
Hugs,
Connie
 



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 10/18/2009 4:49:04 PM (GMT-6)


Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 10/18/2009 7:39 AM (GMT -7)   
We just started gathering all the data needed for the SS application, ie; 6 hospital admissions this year, a half dozen physicians, 20 prescriptions, etc. I will put this info in order today and she is going to apply next week. From what I have read on the SS website, she has to be unable to work for 5 months before her application will be considered. Can she be put on the fast track since she is on the transplant list?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/18/2009 10:42 AM (GMT -7)   

Charlie, I believe that being on the transplant list will fast track her.  That's considered end-stage liver disease; i.e., terminal.  Without a new liver, she will die. 

I know that government rules change all the time, but when I applied, the criteria was "condition expected to last for at least 12 mos."  That didn't mean that you had to be out of work for 12 mos. before applying, but rather that your illness was going to prevent you from working for at least that length of time going forward.  I went back to work P/T while my case was being considered, and it did not affect my case at all.  If a person does not make a "living wage," they are considered unable to work.  However, since you are married, your income might be considered, too, so that may affect her case if she continued working.  It would be best for her to retire.  There is some loophole about being married with too much income.  I know PG and her husband were penalized for this.

You can get the application going by phone.  Then they will send you paperwork to be completed.  TIP:  Make copies of everything, including completed forms, before sending to SS.  They will send even more forms before it's over and you will have copies to refer to.  If they DO deny her, immediately get an attorney.  I actually feel certain that she will be approved the first time around, as she is a transplant candidate.

Good luck!

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 10/18/2009 2:33 PM (GMT -7)   

Thanks for the information, if I am interpreting their website correctly she has to call and make an appointment for the adult disability interview, and our paperwork needs to be in order for the interview process. I have downloaded the check-list of documents to have available. She is simply not able to work now, even part time, so retirement is her only option in order to keep you health insurance. Once I retire to social security and a gov annunity the 1st of the year, hopefully our income won't get her penalized. I fully understand the importance of hiring an attorney immediately, if she is denied. Her liver specialist has even suggested she retire, so I know she will be on our side regarding her health concerning disability benefits.  The following  was cut and pasted from the SS website frequent questions link:

Question

 Why is there a five-month waiting period for Social Security disability benefits?

Answer

The five month waiting period ensures that during the early months of disability, we do not pay benefits to persons who do not have long-term disabilities.  Social Security disability benefits can be paid only after you have been disabled continuously throughout a period of five full calendar months. Therefore, Social Security disability benefits will be paid beginning with the sixth full month after the date your disability began.  You are not entitled to benefits for any month in the waiting period.

The only thing we know to do is apply and see what happens, at this point we really have nothing to loose.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/18/2009 3:48 PM (GMT -7)   
Charlie, it generally takes that long (5 mos.) from the disability to the initial application.  If it takes them a long time to make a decision, as it did with me, they pay a lump sum back payment retroactive to the date you first apply.  I actually had been disabled for about 7 mos. before I decided to file for disability, as I kept thinking I would improve enough to keep working.  Whatever the date you put as the date she became disabled, that's the date they will use.  While I had hep C at the time and that made it impossible for me to work F/T, I had previously been denied SSD based on that alone.  It was only after I had bilateral hip replacements and a revision--all within 7 mos.--that I filed a new application.  So that took care of the waiting period, I guess, as I gave the 2nd surgery as the date of disability as it related to hip problems. 
 
Since she is applying now, I don't think that your income when you retire will make a difference.  However, they could possibly switch her at some point from an amount based on her own earnings to what it would  be if it were half of your full amount--if that amount is greater than her own disability payment.   I know when my ex-husband dies, I expect to be switched to his acct.  At his death I get 100% of his SS.  They do this automatically.  There is so much that they do not tell you and they change things often.
 
Of course, they want you to have the basic info for the phone interview--date disability first occurred, dates of hospitalizations and names of hospitals, etc.  They will send you a bunch of release forms so that they can obtain records, but I made it my business to obtain my own records and forward to them. 
 
Do keep us posted!
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 10/18/2009 6:40 PM (GMT -7)   
Charlie, Welcome to the forum!! I am also a caretaker for my husband who has Hep C/Cirrhoses of the liver and many "side" issues as a result of his ESLD. We, too, are listed on the transplant list in Dallas, but at Baylor, not Methodist. From our experience in dealing with SS, I would like to add with what Connie has posted in that since you are working with the hospital, get one of the social workers on the transplant team (Methodist should have one) to help facilitate all of this. We were denied the first time my husband applied, but we had a social worker at the hospital that helped us quite a bit the next time we applied and we were approved. Just wanted to tell you that so you may try that route as well.

You hang in there!

Mer

Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 10/19/2009 6:03 AM (GMT -7)   
Thanks for the info on the social worker at Methodist, I had never thought about exploring that avenue. There has just been so much going on that it's hard to focus on one particular aspect of her care. She has an RN coordinator at the Liver Institute who has been wonderful, however she has been off for some time now on maternity leave. It seems like she has been gone for months on end, so she should be back any week now. Without her, my communication with them has been very limited to her actual medical care.  I also had not thought about gathering her medical records myself for her initial SS interview, but will certainly begin this week.  Thanks again for your valuable advice. It's a comforting feeling to know that I am not alone being a care-taker for a loved one suffering from this disease.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/19/2009 1:17 PM (GMT -7)   

Charlie, it's not necessary to have the medical records for the phone interview, if you know the dates and places of hospitalization and the reasons.  However, it does speed things up if you can send them the medical records with the written forms.  Just be sure to make copies for yourself.  Also, she will be assigned a caseworker with SS and all info should go to him/her.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 10/22/2009 5:51 AM (GMT -7)   
I logged onto the SS website the day before yesterday and began the on-line application process, however when I came to a page that asked if her illness is expected to result in death, a "yes" answer took me to another page up advising me to contact SS via telephone, that her application may be expedited. I then called and spoke with a very nice lady who took a lot of information from me regarding her illness. She said that since she is considered "terminal" that I should be contacted within 3 days for additional information. She gave me a choice of a personal interview with my wife, or via telephone. Since she is developing ascites again and may have to undergo another paracentesis soon, I elected to do it by telephone. She said that I can always bring additional records to the local SS office here in Fort Worth. One of her gastroenerologist's nurses is scanning all her records and will have them ready for me to pick up this coming Monday. Now I have to prod her Hepatologist's office staff to do the same. Hopefully she will be approved the first time around. Thanks for your advise and understanding. I will keep this updated, if nothing else for the benefit of other care-givers who are facing a similar situation.

 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/22/2009 12:47 PM (GMT -7)   

Charlie, thank you for the update!  I'm so glad that they are expediting her application!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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