from leukemia to cirrhosis 21 yr. old needs liver transplant

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mom's "will" to live
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Date Joined Oct 2007
Total Posts : 111
   Posted 10/12/2007 8:34 AM (GMT -7)   
Hello, I'm a newbe here and hope after reading some of your post I'M IN THE WRONG PLACE. My name is Toni and my son Will. I have to start from the beginning as so all will know and hopefully give me some answers. Will was born 4/8/86 on 8/31/87 my son was diagnoised w/AML Leukemia very rare for a 16 mnth old. ALL is the child version, of course Will ends up with the adult strain. Okay, blabla were having last dose of chemo. on Thanksgiving Day, 1989. After, long uphill battle, Will is in remmision!!! YEH! This was the cool part Christmas Eve Dr.G calls says Merry Christmas I do not need to see Will again until he turns 16 yrs. old and can drive himself, have a nice life that was 1992. 1992 to 2002 He was not sick one day in 10 yrs. not even a cold! Will and I went for our 10 yr. reunion  so that Dr.G could see him at 16, he was highest rank in ROTC for a freshman in highschool and his life dream was to be in the airforce.That was on 7/31/02. He was diagnoised on 8/31/02 w/ Chronic Hep B blood test then a liver biopsy confermed f3 liver damage. Immediatly he starts Interferon shots for 6 months Dr.B said medication was working. On 7/28/03 Will had blood test no bad results .Busy year for Will as his ROTC group went to Washington, D.C. and I was getting married for the 2nd time.  7/21/04 I called for annual apt. Nurse doing the scheduleing was reading Will's chart and said his last blood test was highly elevated with a viral load over 580million copies and Dr.B wants to see him ASAP. Due to my surprise I told her to check the date as the testing was done the year prior. Don't ever assume "no news is good new" that's what we did and it has now come to bite us in the butt. Apt. was made to see Dr.G and then Dr.B on same day. Dr.G was furious about this and blessed Dr.B for he and his staff dropped the ball! We have been referred to Shands in Gainesville. On 8/31/04 Will is now on Hepsera doing well counts have come down considerably we travel 4 hrs. every 6 months for check up. His Hepsara came up for annual evaluation on 5/15/07 I recieved the papers to do our part but, eveditialy Dr.F did not, I called left several messages but no return calls.On 8/31/07 my son has a viral infection, I take him to local clinic for antibiotics and request them to do a hep panel. He has been off Hepsera now 16weeks. This Dr. of course tells us Will needs to return to Shand's viral load now 350million copies and very active. It's been 5 yrs. since his last biopsy that was done on 9/7/07 just recieved news from Dr.F that he has cirrhosis of the liver and they found a nodule. No one want's to tell us what's next? Will has no insurance and because he's 21 yr. old he falls threw the cracks, he's not a pediatric nor is he a geriatric. Dr.F say's with the level 6 progression he will need a liver transplant soon.  What's soon? Also, Dr. wanted him back up there this week for CT scan but, because of no insurance canceled his apt. and  now wants us to return in Dec. for ultrasound. As a mother I feel so helpless, and I feel that we have hit another wall! Can anyone tell me, who,where and what to do to find financial help? And, approximatley how much time before he gets really sick? Sorry, this was a short story but, I wanted all to know this has been on going for many years and I cannot bear the agony of seeing him suffer the way some of your loved ones have. Do I need a miracle to save my child ? Thanks for listening! Well Wishes to All!!!         Toni

Butterflythree
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   Posted 10/12/2007 4:46 PM (GMT -7)   
Toni, My heart goes out to you and your family. I also have a 21 year old son, and I can only imagine what you are going through. I wish that I could answer some of your questions, but I am fairly new to liver disease myself. There are a lot of knowledgeable people here that may be able to help you. My husband's doctors are usually very vague when it comes to time frames concerning liver transplant. The only thing they have really told me is that his MELD score is 10 and, when it reaches 15 they will do a work up to get him on the transplant list. I know by reading other posts here the MELD score is a lot higher before the ball gets rolling on the actual liver transplant. I also no that each individual is different when it comes to the progression of cirrhosis.

You and your son will be in my thoughts and prayers.

mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 10/12/2007 6:26 PM (GMT -7)   
Thank you so much for listening! My mom and I were just talking and all of a sudden she say's I'm grim and that going around asking for donations or asking for help. When I should pray! I pray,I pray to GOD everyday that my son does not get sick and does not have to suffer with this terrible discease. I pray that I win the lottery so I can give him the best  medical care that I can! I PRAY THAT GOD GIVES US YET ANOTHER MIRACLE AFTER ALL HE DID HELP WILL FIGHT HIS LEAUKEMIA!!! I'm venting I'm sorry, but I've done alot of reading on this subject and it does scare me to death! Mom just called back so we could start over she love's me! And, after I explained that I'm angry not grim she understands.Anyway's Will and I were told that by this time next year he will need a transplant his MELD is at 7.8 ,he's between A-B cirrhosis I know we have time, he is not showing any signs of sickness other than weight loss. The Dr's put him on Barraclude and say it is twice effective very strong stuff. I've also been told the Milk Thistle is something to look into.What I want to know is they found a nodule on his liver.What's that and is it something to worry about? Dr' was concerened enough to schedule a ct scan for this coming week and then cancelled it 2 days later because of no insurance so are apt. now is Dec. 7 for ultrasound. Wouldn't you be angry and not grim. Is it your son or husband that is sick? You and your's are also in my prayers! Yes, I pray!(lol)

Pink Grandma
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Date Joined Nov 2006
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   Posted 10/12/2007 6:58 PM (GMT -7)   
Welcome to healingwell Toni. I am sorry that you are dealing with a sick child. To me that worse than a husband or parent. And yes you have found the right forum. First of all where do you live? Each state has different programs for helping with medical bills.
I don't know anyother way to tell you but straight forward. Get your son a CT scan. What ever it takes. That nodule could be cancer. They called my husband's that and it did turn out to be cancer. Does your county have a "county hospital". Ours in California have to take patients whether they can pay or not. We have Medical for people who can not afford health insurance. Google your state and county for health services. Ask your doctors office staff if they know of any programs. What's the name of the children's hospital that Danny Thomas founded. I can not remember the name now. Find it's website and see what the age limit is. Tell them your son's story maybe they can help you if not maybe they can direct you to some place that can. The internet is a powerful tool. Use it.
Good luck... My thoughts and prayers will be with you.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going!


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 10/12/2007 8:28 PM (GMT -7)   

Welcome, Toni!  I wrote a long post to you earlier and then lost it!  I didn't feel like rewriting it.  Anyway, the Danny Thomas charitable hospital is St. Jude's in (I think) TN.  Your son may be past the age limit, but it never hurts to ask.  Has he applied for Medicaid?  If you have a local teaching hospital, you should at least be able to have the CT done there.

Continue to ask questions and to research hep C or whatever disease you know little about.

Good luck!

Connie


Butterflythree
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   Posted 10/12/2007 8:37 PM (GMT -7)   
It is my husband that is that is sick, and yes I get very angry and grim at times. I think it would be alot harder if it were my son. At least my husband and I have had time to experience life. Just don't give up hope. People make it through this everyday. I actually think his age is on his side. I'm sorry that I don't know much about insurance. I may be going through the same thing with my husband if he is unable to get his job back due to a reaction he had from medication he was taking. Connie (hep93) has first hand knowledge of liver cancer. Hopefully she will read this post and can answer more of your questions. My husband is between stages B-C. He has ascites, encephalopathy (? spelling), portal hypertension and varices. I get very afraid at times. This is the place to come to for venting. I have done it myself. Coming here has made me feel a lot better.
Pink Grandma has a lot of experience with this. Take her advice.
Thanks for your prayers.

frustrated_n_wv
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Date Joined Aug 2006
Total Posts : 469
   Posted 10/13/2007 6:27 AM (GMT -7)   
Toni

My heart goes out to you. I too have a 20 year old son and I can not imagine having to deal with that kind of news. I understand your anger and hurt. This is a really good place to vent your feelings, I know that you want to stay strong and positive for him, so let us be your sounding board.

Pink Grandma is right that there should be in your state/county hospitals that are mandated by law to take patients regardless of their ability to pay. In some states your son could still be eligible for a medical card based on his lack of income and him being an adult. You could call either your county department of human services (or whatever that system is called where you are from) or talk with the social service department at your local hospitals. The social workers at the hospital should be able to guide you through the red tape to be able to get your son an ultra sound. Also you should check with the department of rehabilitation services in your area. They maybe able to help with medical bills or direct you how to apply for temporty disability benefits for your son. Hope this helps in giving you some ideas of where to turn.

My thoughts and prayers are with you and your son.

Lucy

mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 10/13/2007 8:27 AM (GMT -7)   
Goodmorning All! Thank you for your responces and advice. I knew I came to the right place! I just hope I'm not to late in getting the knowledge, to help my son thru this. I truely believe things happen for a reason. I have always told Will that he has a purpose, that God put him on this earth for a reason and one day we will actually know what that is. Maybe, he will be the chosen one for that miracle cure!!! I can only be positive! We live in Florida and We have been going back n forth to Shand's Hospital in Gainesville,it is a teaching hospital , however, we are out of thier territory for any type of funding , grant ect. I have a meeting with a lady Monday from our area that want's to help with organizing fundraisers and such. My BFF Nancy is going thru medical school to be an RN and works for Tampa General. She has talked to a few of her Dr. friends and they suggest I transfere Will to Tampa as they also are a teaching hospital, but are self funded to help people in need! Also 4?? or so people on transplant list at this point is that good? Well, at this point I will look into any and everything I can! Your post are most helpful in this learning process of this disease. Oh, and your prayers are much gratefuly needed please keep them going and I in return will pray for all of you and yours. Will give you more info when I know more.Thanks to all!
 Oh, back to answer Pink Grandma, Will does not qualify for SSI oR medicaid at this point they do not consider him disabled because, he's still functioning.Even tho it's a life threating disease he liturally has to be on his death bed so to speak. Unfortunally, his age he falls thru the cracks because alot of the funding I'm coming across is only for pediatric or geriatrics.I have looked into the Danny Thomas foundation and like most they only help young adults to the age of 19. You really need to be a millionare to be this sick !!! IT'S SO NOT FAIR! MAYBE, THIS IS MY PURPOSE TO FIND HELP AND SUPPORT FOR OUR YOUNG ADULTS! Talk to you all again real soon !  
                                                                                                            
                                                                                            Thanks again, Toni

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 10/13/2007 3:15 PM (GMT -7)   

Toni, you received good advice as far as transferring to Tampa General.  It's a better hospital.  Four people on the transplant waiting list is excellent!  For what it's worth, Mayo Clinic in Jacksonville has the shortest wait time in the state!  I have hep C and did develop liver cancer.  Because of the size of the tumor (12 cm at longest point) and the fact that it had metastasized to the inferior vena cava, they would not consider me for a transplant.  I had two different types of specialized liver chemo, which shrunk the tumor and the metastasis, and made me eligible for surgery to remove the entire right lobe of my liver in mid-May of this year.  I am still recovering, as I developed a hiatal hernia and am waiting for the okay to have that repaired.  I was accepted by Mayo because I have Medicare as a primary insurance.  I also qualified for their patient charitable help, in which they pay the balance of what Medicare doesn't cover 100%.  I know they do not accept Medicaid as a primary insurance,  nor do they accept any HMOs.

Do not give up!  There is help available...you just have to find it!   eyes   Good luck!

Connie


Post Edited (hep93) : 11/4/2007 12:16:03 AM (GMT-6)


mom's "will" to live
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Date Joined Oct 2007
Total Posts : 111
   Posted 10/13/2007 5:22 PM (GMT -7)   
CONNIE, HI ,THERE IS 400 OR SO PEOPLE ON THE LIST IN TAMPA I PUT ? MARKS BECAUSE I'M NOT QUITE SURE THE NUMBER. BUT, I DO KNOW IT'S LESS THAN WHO'S ON SHAND'S LIST. IF YOU DON'T MIND ME ASKING? DID YOU HAVE A NODULE ON YOUR LIVER THAT TURN INTO CANCEROUS TUMOR? SHOULD I BE CONCERENED about THAT? I NEVER NEW HOW CONFUSING ALL THIS IS! IF THEY CAN REMOVE YOUR TUMOR THEN WILL YOU BE ABLE FOR A TRANSPLANT? HAS ANYONE HAD THEMSELVES OR KNOW SOMEONE THAT HAD A LIVE TRANSPLANT. I SURE HOPE YOU HAVE A FULL RECOVERY .THANK YOU FOR YOUR ADVICE. I'VE BEEN THINKING about THIS ALL DAY AND NOW I HAVE TO PRESENT THIS MOVE TO MY SON. HOPEFULLY HE WILL SEE IT IS IN HIS BEST INTREST FINANCIALLY AND MEDICALLY.YOUR IN MY PRAYERS!
                                                                                                TONI

Butterflythree
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Date Joined Oct 2007
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   Posted 10/15/2007 4:59 PM (GMT -7)   
Toni, I think of you and your son often, and wish that I were a millionare so that I could help you. Something needs to be done about the healthcare in America when a whole group of people are left out. If I ever win the lotto you will be the first to know. Hang in there and be strong. I will continue to keep you and your son in my prayers.

mom's "will" to live
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Date Joined Oct 2007
Total Posts : 111
   Posted 10/15/2007 7:17 PM (GMT -7)   
Butterflythree, Thankyou so much, Let me tell you what happen today! It gave me chill bumpes! My husband is a National Sales Trainer, he's gone thru the week and home on the weeksends so we talk daily on the phone. He mentioned is his last class of 32 people Will's condition .I'm just so overwhelmed with all th caring! One of his students actually called and asked if she could donate 5% of her paycheck plus, 5% of her commisson of sales, all to go in a fund for my son. The coolest thing that ever happen to us! This good samartan also, purposed this to the other student's and so far most have already signed the list to do the same! I've always been the one to organize functions, fundraising, or help whoever, doing whatever I can. Will is the same way! I guess we never thought we would be on the recieving end! I have one the lottery!!! It's not about the money but, rather than the people you come across everyday. My husband has a quoat he uses in his class and it goes like this if i can remember "Treat every person you meet, whether it be friend or foe, loved one or stranger, as if they would be dead by midnight. Give each person, no matterhow trivial the contact, all the care, kindness, understanding and love you can. Do it with no thought of any reward. YOUR LIFE WILL NEVER BE THE SAME AGAIN!". After I recieved this e- mail (when I got done balling my eye's out). It's like how, do you repay someone like that? Just wanted to share that :-)  it makes you believe anything is possible!
My Thoughts and prayers are with All!
 
Toni

Butterflythree
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   Posted 10/15/2007 7:37 PM (GMT -7)   
Toni, I am so happy for you and your family. I also got chill bumps while reading your post. It made me want to cry with happiness. There are some good people left in the world. God is answering our prayers.

mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 10/16/2007 9:40 AM (GMT -7)   

Hello Everyone,

Just wanted to update on whats going on? Will and I sat in the SSI office for 1hr.1/2 just for them to say his 900.00 a month income does not qaulify him for disability. However, we have another apt. in Nov. to try again as he's getting to tired and weak to work. Is this a sign of the bad times to come? Also, Medicaid does not qaulify him either as he makes to much and unfortunatly they said it could take up to 2 yrs. before they consider him medicaly needy? Do we have that much time? Talk with nurse yesterday to find out about transfering Will from Shand's to Tampa General, well, after her taking offence of suggesting such a thing she called today to say not no but, Will is one of their top priorety patients and they will do everything medically necessary for him. I'm still concerned with the nodule they found and CT they canceled but, Dr. says it is small and Dec. ultrasound will let us know if it has grown in 3 months. Do we want to wait that long? or should I atleast request it for earlier? Has this been a normal process for all in need of help? Just when I get a ray of sunshine it seems to turn gloomy again! Thanks for listning! Prayers and Thoughts to all!

Toni


Pink Grandma
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Date Joined Nov 2006
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   Posted 10/16/2007 6:52 PM (GMT -7)   
Oh Toni, I am so sorry, but that is the way it seems to go too often. One day everything is looking up and the next everything takes a dump. It's like a wild roller coaster ride. Did the doctor tell you what small was? Ask him how many cenimeters it is. Well, that nurse said that your son was high priorty... find out how high. Request the CT scan. She if she can make it happen. If she can't you got your answer. Thoughts and prayers.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going!


mom's "will" to live
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Date Joined Oct 2007
Total Posts : 111
   Posted 10/16/2007 7:56 PM (GMT -7)   
Pink Grandma, You got me thinking ??? I have recieved Wills biopsy report and  there in findings :An 18mm unfragmented core of tissue was obtainted. They had Will sign a paper to expierament the new study of electrosomthingorother sorry,Ultrasound in which the Dr. took 10 scans. Your right I need to find out ! It makes me so angry because all of his life every Dr. he came across drops the ball! Because, of their lack of caring!!! It's now my Emergancy. I'm going to definatley call first thing in the A.M. and request them do a CT or we have no choice but,to relocate! I tell ya' I'm so glad I came to this site. You, all have little bits and pieces of everything .I feel the LOVE!!! Thanks ladies and gentalmen! Hope all has a goodnight. My 6yr. old daughter and I have a ritual everynight before bed!!! As she lays down and after her prayers its butterfly kisses, esckimo kisses, Big hugg, baby hugg and smootches. So from Me and Marilea to All of You!!!! Sleep Well and Sweet Dreams.
 
 
 
Sincerely,
Toni

Butterflythree
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Date Joined Oct 2007
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   Posted 10/16/2007 8:13 PM (GMT -7)   
Toni, I have never been able to understand how Doctor's can be so inconsiderate when it comes to putting tests off or giving the results of tests. Do they know how much worrying could be avoided if they would just get things done. You are still in my prayers.

Sounds like a sweet ritual you and your daughter have.

mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 11/1/2007 1:55 PM (GMT -7)   
Hello All, Hope everyone is doing well! I've got several questions, hope someone can help me out? Will and I went to SSI for re-evaluation and looks like he may be approved this time however it could be after the first of the year! Medicaid won't pick up for atleast 1-2 yrs.! Don't know if maybe anyone has any suggestions about getting them to rush this? If he was on dialysis they would cover! It's Crazy, the way people play with other peoples lives! If he was an illegal alien or in jail he would get help right away!!! This system sucks!!! The Dr's. did not biopsy the nodule on Will's liver due to if it was cancerous it would spread? Also, RN told me yesterday that in Dec. if there were more than one or if it turns to cancer he would not be a candidate for transplant. WHY? Oh, and here's a good one. The medical reports we got from the hospitals for all treatment in past 5yrs. Well, they so conveiniently left out a whole years worth of info  where Dr. drops ball (first thread) and said that due to biochemical off and on meds Will has made himself worse. RN also, said that that would also be a determination for the transplant? Why is that? Like I don't have enough to worry about Will lifts his shirt up this morning and he has to me looks like a couple of bites (under ribcage), he say's they bother him and around his ankel looks like busted blisters is this something we should be concerned about? I do have a call in to RN but, no responce as of yet! I don't want to be the overly protective mom and make a big deal out of every little thing but I have no clue what to look for first . I don't want to ignore any signs! Hope someone can give me answer's? I'll check back shortly. Thanks!
Take care! Huggs and prayers to ALL!
Toni

Butterflythree
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   Posted 11/1/2007 4:55 PM (GMT -7)   
Toni, I am glad you are back. I have been wondering how you both are doing. I wish I could help you. My husband has been trying to get SSI for about two years now, and it looks like he will also be needing Medicare, or Medicaid. He is currently waiting for a hearing. The blisters might be a staph infection. I will pray that everything works out you for.
Butterflythree
 
There is always hope!


Pink Grandma
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Date Joined Nov 2006
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   Posted 11/1/2007 7:00 PM (GMT -7)   
Hello Toni, That was my thought also (Staph infection). People in and out of hospitals tend to get it at some point. Is the nurse telling you about the cancer and qualiflying for the transplant list work at a transplant hospital? If not get someone who knows for sure at your nearest transplant hospital. A coordinator or a hepatoligist. At my husbands transplant hospital it was okay for him to have cancer. But it could only be less than I believe 5cm large. Or no more than 3 tumors that were less than 3cm each. I am not sure that all transplant hospitals have the same guidelines for their qualiflying candidates. You need to get it straight from the horse's mouth. Good luck. Thoughts and prayers.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going!


mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 11/2/2007 9:35 AM (GMT -7)   
Goodmorning All, 
Butterflythree and Pink Grandma, Thanks for getting back with me. Yes, I think your right about the staff infection as a nurse friend of mine checked him out last night saying because of no immune system he's more apt at getting sores, colds, bruiseing ect. He just has to be very careful! Will has been seen at Shand's Hospital in Gainesville, Fl. so far I've been told they are looking at a 2month waiting list for transplant recipeints I think thats pretty good. So far his nodule at time of biopsy 9/17/07 was 1-2 cm and they only saw 1 that we know of. Its not a funny thing but I get more info from his RN than I do his DR. and to my knowledge we have never even layed eyes on her in 3 yrs. I have relied on her info over phone conversations. But, so far she's been brutily honest and very supportive in this whole journey plus, she explains in a way that it is understandable. If it comes right down to determination of the list and this Hospital doesn't approve him then we will be Lifelinked to Tampa General (Mayo) Hospital. Butterflythree I read on this forum almost daily. Actually, I'm a better listener than I am respondent. I try to keep up! By the way you have a very special daughter, and I hope that her knowing what's going on with her daddy has been a big burden off your shoulders and she's helping you with more! I know we moms tend to pertect our young and sugar coat some things but, you just don't know how much they really know? More than you think! My 6 yr. old surprised me the other night, she out of the blue say's mom, how can I help make Will all better! (she had to go to Shand's with us last visit, no babysitter, Well there was a couple making crosses out of palm frams and she was wanting to help. They made them, she sold them for 3.00 for them they split the profitts she ended up with 27.00) my point is she wants to make something to sell so she can help make Will feel better! I know she knows Will is sick but, I havn't told her how sick !
Take care and I'll chat later. Keeping the faith! Thoughts and Prayers to All!!!
Toni

Butterflythree
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   Posted 11/2/2007 5:14 PM (GMT -7)   
Toni, It sounds like you have a very special daughter also. Talking to my daughter did help. I think it made her feel that I was treating her as an adult. She is understanding why her dad gets the way he does sometimes, but she still doesn't like it. I guess none of us do. He can be very moody at times.

My husband never sees the actual doctor either. His appointments are alway with the PA. I am not sure if I like her bedside manner. She doesn't seem like a people person. I think she probably has too many patients.

I think that everything is going to work out for Will. I feel it in my heart. Has he seen the Dr for the blisters? There is a resist form of staph going around. Some of my family members have had it. They were prescribed a lot of medicine, and it healed. My immediate family has been fortunate so far. Thank God. I would really worry if my husband contacted it.
Butterflythree
 
There is always hope!


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 11/3/2007 11:13 PM (GMT -7)   
Toni, sorry I've not been reading or posting here.  Mayo has been keeping me busy with scans, etc.  I felt I was healed enough to have the hernia repair, but my surgeon was out of town when I last saw the P.A.  (She usually sees me first, then finds him and has him see and examine me.)  She called Thurs. and said that he was back in town for only a day, and then was out of town again for a few days.  She did manage to make contact with him and discussed my case.  He is finally willing to do the surgery to repair the hiatal hernia that developed after the liver surgery.  My surgery date is Dec. 14th.  So I will have to get everything for Christmas done early, although I will not put up a live tree this year.
 
I've just read all the posts since I was last here, so there were quite a few.  First of all, my liver tumor was 12 cm x 8.5 cm when I was first diagnosed by CT scan only.  That was at Shands Jacksonville.  They moved like snails there.  I first was seen in GI Clinic and was going to be referred to hepatology.  After 2 months and additional scans, I switched to Mayo.  I thought I was going to need a transplant, and Shands had said I would need to go to Gainesville for that.  My b.f. and daughter would not be able to make that trip, which is one reason I made an appt. with Mayo.  Mayo said I was not a candidate for transplant, as my liver function was still good, even though enzymes were elevated.  Fatigue had been my first symptom for at least a year prior to hep C diagnosis in '93.
 
At the time I went to Mayo, my tumor had invaded the inferior vena cava (an artery), so it was considered metastasized...another reason I would not be eligible for transplant or even surgery.  As I mentioned in a previous post, I was given chemoembolization to shrink the tumor, and a month later received TheraSphere to shrink it even more.  Then I was considered operable.  Due to the size of the tumor, even after treatment, they elected to remove the entire right lobe of my liver.  This was done in mid-May, as I mentioned in a previous post.  It went very well, except that I developed a hernia at one of the incision sites, 2 months post-op, so that is what we are addressing now.  However, as I said at the start of this post, I've recently had a PET scan with contrast and a CT scan with contrast, and there is no evidence of cancer!
 
As far as SSI/Medicaid is concerned, your son is better off NOT working.  If his doctor could write a letter stating the diagnosis and that he is too ill to work, that might help.  Also, he SHOULD have the CT scan.  He should also have an MRI with gadolinium and a PET scan with contrast, if possible.  Those scans should show whether the nodule is cancer or not, without having to have a biopsy.  Also, a blood test for alphafetoprotein should be done.  That is a tumor marker.  There should not be a waiting period for Medicaid.  Medicare requires a 2-year wait after a patient has been declared disabled.  In my case, it took them over 2 years to approve me for Medicare, so I got it right away...in fact, retroactively by 2 months.  Medicare is based on work history income, and how much has gone into Social Security.  Medicaid is generally for those without sufficient work history to qualify for Medicare.  In my case, I receive Medicare, but Medicaid pays my premium, and also the premium for my drug plan.  Additionally, I think they may pick up some of my hospital expenses under Medically Needy.
 
What did you mean when you said that Tampa is a Mayo Hospital?  Mayo here in Jax uses St. Luke's, but will have it's own hospital on the Mayo campus opening in April! 
 
I hope this has helped you a little.  If you have further questions, feel free to ask.  One of us should have an answer or be able to steer you to someone who does.
 
Hugs,
Connie
 
 

mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 11/5/2007 10:04 AM (GMT -7)   
Hey Connie, Missed you! How are you today?Hope all is well, My BFF works at Tampa General as RN and she said they have a Transplant Ward that is part of Mayo matter a fact I just found out I have an Uncle from Ga. that has been referred from Jax. to Tampa he went one time and decided not to follow thru as he has not only Hep C cirrhosis but, several brain tumors he's been fighting off this stuff for 10 yrs. I think he's giving up! Dr's say they will keep him comfortable but really it's only a matter of time. Will has stopped working for the most part but, he still helps out to keep himself busy and not just sittin around getting depressed! As far as SSI and Medically needy Medicaid were just waiting to here if he's app. this time, three times the charm right! Well, someone did tell me we had to go thru several appeals before he would qualify. It's a shame, I posted this before if he was on dialysis or had Asma he would be concidered disabled however,  a life threating disease does'nt count! Somethings really wrong with this picture!!! Anyway, as long as Will is still functioning he's not able to get medically needy medicaid.I think he is to young for Medicare. We will keep fighting it  unti they do something!!! Is that pretty big for a tumor? Did it grow fast? Will you be able for a transplant after your hernia is repaired? Sorry,about all the questions?
Take care and keep in touch. Thoughts and prayers to all!!!
Huggs and smooches!
Toni

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/6/2007 6:28 AM (GMT -7)   
Toni, your son is not too young for Medicare...but he may not have sufficient work credits to qualify for it. In that case, he would get Medicaid. As stated earlier, Mayo will NOT take Medicaid as a primary insurance. Understanding that the transplant center at Tampa General is connected with Mayo, may be problematic or not.

Either my tumor grew very quickly or was missed the previous year. Because of having hep C, I had a sonogram every year, knowing I was at risk for cancer and/or cirrhosis. When they did the last one at Shands, it showed a very large tumor (cm is larger than mm.) By the time I got to Mayo, after about 9 mos., it had grown another cm or so. In cases where a tumor is being excised, they want to take a considerable margin of healthy tissue, also. Since my tumor took almost the entire lobe, it made sense just to excise the entire right lobe. As small as your son's nodule is, they may elect to simply try killing it through various means. They will probably have several options available. It may not even be cancerous. It does not sound like he is anywhere near needing a transplant, so please don't panic!

Hugs,
Connie
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