Aa
At a loss
Hello and thank you for taking the time to read this post. 10 days ago, my brother, who is 50, was diagnosed with chirrosis of the liver, Hep B and C. He was told his White blood platlets were 40 and was suppose to be 100. I don't know what that means really? Also, The trunk of his body is yellowish, the whites of his eyes are yellowing as well. We are not 10 days past the diagnosis and I am still trying to get him seen by a GI Dr. Everyone seems to be dragging their feet. I notice he is often tired, he is itchy at night, eating exsessivley but he is not at all overweight. His stomach was swollen, which is what first lead him to going to the hospital. He complains of his right side hurting him a lot. He is taking vitamins, some milk something or other that is suppose to help the liver. I just would like for someone to help me understand all of this, his general practice doctor told him she would suspect he had 6 to 9 mos. to live. How could she possibly know this? She is no expert, and certainly not God. Can someone please lead to to things he could do to boost the white blood platlets while I wait to get him in to a GI, can someone offer some suggestions about their experience or what I need to know, do, or expect. I am truly at a loss and I feel as though my hands are tied. Again, Thank you for your time.
Sincerely,
Chelle
Sincerely,
Chelle
Sounds like your brother should be seen at a transplant center by a hepatologist as soon as possible. I'd by-pass the GI doc as this may only eat up time.
One of our members here ,Hectorsf is very familiar with cirrhosis and it"s manifestations ,so hopfully he will see your post and chime in.
In the meantime let me say I am sorry to hear of your brothers diagnosis.
From what you explain he is very sick and his liver is failing
His platelet level being so low (trouble with his speen) ,the jaundice (yellowing of the eyes and skin) and the swollen stomach (ascites ) is due to fluid build up.
The doctor certainly does not know exactly how long he will live,however it is imperative he is seen by a hepatologist (preferably at a liver transplant centre )as soon as possible to monitor his care.
Best wishes to you....
Will
In the meantime let me say I am sorry to hear of your brothers diagnosis.
From what you explain he is very sick and his liver is failing
His platelet level being so low (trouble with his speen) ,the jaundice (yellowing of the eyes and skin) and the swollen stomach (ascites ) is due to fluid build up.
The doctor certainly does not know exactly how long he will live,however it is imperative he is seen by a hepatologist (preferably at a liver transplant centre )as soon as possible to monitor his care.
Best wishes to you....
Will
Hi Chelle,
Sorry to hear of your brother’s recent diagnosis. Others more familiar with cirrhosis will likely stop by later with their input; I’ll share a few things with you right now.
If your brother uses alcohol, he must stop drinking now; this will be a life or death matter for him. If he requires a liver transplant in the future he won’t be considered for TP unless he can demonstrate a period of sobriety, usually at least six months.
He needs to get a referral to a liver specialist soon; preferably a hepatologist, but sometimes only a GI doctor is available; hepatologists focus strictly on liver related problems however.
Based on your description it sounds as if your brother might be experiencing ESLD (end stage liver disease. It’s difficult to state with any accuracy what his life expectancy is, although the MELD score (model end stage liver disease) can offer some insight as to morbidity/mortality. You’re correct; his doctor isn’t God, and there are actions that can be taken by both the medical community and the patient to extend his health and lifespan significantly.
He should discuss ALL meds he takes including OTC products with a doctor. Additionally his doctor will likely assign a sodium free or reduced sodium diet, and may place restrictions on his intake of red meat, especially if he’s suffering ‘brain fog’ (hepatic encephalopathy. He should also schedule an EGD (endoscopy) soon to evaluate whether varices are present in his esophagus. His doctor will also schedule abdominal imaging and AFP markers to rule out the development of HCC, or primary liver cancer; once cirrhosis is established, this will be an ongoing concern.
Good luck to you both and welcome to the discussion group,
--Bill
Sorry to hear of your brother’s recent diagnosis. Others more familiar with cirrhosis will likely stop by later with their input; I’ll share a few things with you right now.
If your brother uses alcohol, he must stop drinking now; this will be a life or death matter for him. If he requires a liver transplant in the future he won’t be considered for TP unless he can demonstrate a period of sobriety, usually at least six months.
He needs to get a referral to a liver specialist soon; preferably a hepatologist, but sometimes only a GI doctor is available; hepatologists focus strictly on liver related problems however.
Based on your description it sounds as if your brother might be experiencing ESLD (end stage liver disease. It’s difficult to state with any accuracy what his life expectancy is, although the MELD score (model end stage liver disease) can offer some insight as to morbidity/mortality. You’re correct; his doctor isn’t God, and there are actions that can be taken by both the medical community and the patient to extend his health and lifespan significantly.
He should discuss ALL meds he takes including OTC products with a doctor. Additionally his doctor will likely assign a sodium free or reduced sodium diet, and may place restrictions on his intake of red meat, especially if he’s suffering ‘brain fog’ (hepatic encephalopathy. He should also schedule an EGD (endoscopy) soon to evaluate whether varices are present in his esophagus. His doctor will also schedule abdominal imaging and AFP markers to rule out the development of HCC, or primary liver cancer; once cirrhosis is established, this will be an ongoing concern.
Good luck to you both and welcome to the discussion group,
--Bill
Thank you guys so much, but I am near Dayton, Ohio.. Where do I begin with a trsnplant specialist? I can't even seem to get him into a GI with refferal in a decent amount of time. I am very scared and I feel like time is wasting away.
Hi Chelle,
I very sorry to hear about your bother’s condition. It must come as quite a shock.
First, don’t worry about what the regular doctor says. They are NOT qualified to diagnose or treat your brother. But this a very serious condition.
He needs immediate treatment to stabilize his condition.
If would try to get him into "the Cleveland Clinic Transplant Center" I know it is far, but your brother’s life could depend on getting him to the right place as soon as possible. The Cleveland Clinic Transplant Center is one of the best medical center in the world for the condition your brother has. If my life depended on it, I would want to go there.
Here is the number. Call her and tell her the condition of your brother and try to get him to be seen ASAP. They should be able to stabilize his symptoms and then they will take care of him when he needs a liver transplant and for the rest of his life. I can’t over emphasis the need to the best care available as your brother’s condition can be life-threatening!
Liver Transplant
Jacqui LeMaster
Department Supervisor
Phone: 216.444.8770 or 800.223.2273 x48770
Follow her advice. She may have him taken to a local hospital as he needs help now. But Cleveland Clinic may be able to over see his care.
The main point is you want to get your brother into the liver transplant program at Cleveland Clinic. So whatever you need to do to do that so it. I know at first all this is very difficult as it is all new and a steep learning process. But in time this all all make sense.
In the future you can get a local doctor to take care of your brother and he can use Cleveland Clinic to supervise his local care. But right now he needs emergency care that only a transplant center can provide.
Second Opinion Service
For patients who cannot travel to Cleveland but would like a second opinion from a Cleveland Clinic physician, The Cleveland Clinic offers specialist consultation and second opinions using the Internet. The service, e-Cleveland Clinic, provides online second opinions for patients with life-threatening and life-altering diagnoses. To learn more, see the e-Cleveland Clinic Fact Sheet.
Here is a link to the Cleveland Clinic Transplant Center.
http://my.clevelandclinic.org/transplant/services/liver/default.aspx
But right now time is of the essence. You brother MUST be seen ASAP at the transplant center.
Later on we can discuss the degree of his illness etc. That can wait. Immediate care is needed. Your brother’s life could depend on it. Don’t delay. Have others help you will this process. It can be difficult but if you work at it, it can be done.
If you have any other questions let me know. Unfortunately I will be at the transplant center here today a good part of the day, so it will take time to get back to you. I'll be back after 7 PM California time. You can send me a private message and I can help you with the details.
FYI: Your brother should stop taking all vitamins as in his condition they could be making his illness worse.
A platelet count of 40 is typical for his condition. But it is nothing to worry about.
Hang in there.
Hector
I very sorry to hear about your bother’s condition. It must come as quite a shock.
First, don’t worry about what the regular doctor says. They are NOT qualified to diagnose or treat your brother. But this a very serious condition.
He needs immediate treatment to stabilize his condition.
If would try to get him into "the Cleveland Clinic Transplant Center" I know it is far, but your brother’s life could depend on getting him to the right place as soon as possible. The Cleveland Clinic Transplant Center is one of the best medical center in the world for the condition your brother has. If my life depended on it, I would want to go there.
Here is the number. Call her and tell her the condition of your brother and try to get him to be seen ASAP. They should be able to stabilize his symptoms and then they will take care of him when he needs a liver transplant and for the rest of his life. I can’t over emphasis the need to the best care available as your brother’s condition can be life-threatening!
Liver Transplant
Jacqui LeMaster
Department Supervisor
Phone: 216.444.8770 or 800.223.2273 x48770
Follow her advice. She may have him taken to a local hospital as he needs help now. But Cleveland Clinic may be able to over see his care.
The main point is you want to get your brother into the liver transplant program at Cleveland Clinic. So whatever you need to do to do that so it. I know at first all this is very difficult as it is all new and a steep learning process. But in time this all all make sense.
In the future you can get a local doctor to take care of your brother and he can use Cleveland Clinic to supervise his local care. But right now he needs emergency care that only a transplant center can provide.
Second Opinion Service
For patients who cannot travel to Cleveland but would like a second opinion from a Cleveland Clinic physician, The Cleveland Clinic offers specialist consultation and second opinions using the Internet. The service, e-Cleveland Clinic, provides online second opinions for patients with life-threatening and life-altering diagnoses. To learn more, see the e-Cleveland Clinic Fact Sheet.
Here is a link to the Cleveland Clinic Transplant Center.
http://my.clevelandclinic.org/transplant/services/liver/default.aspx
But right now time is of the essence. You brother MUST be seen ASAP at the transplant center.
Later on we can discuss the degree of his illness etc. That can wait. Immediate care is needed. Your brother’s life could depend on it. Don’t delay. Have others help you will this process. It can be difficult but if you work at it, it can be done.
If you have any other questions let me know. Unfortunately I will be at the transplant center here today a good part of the day, so it will take time to get back to you. I'll be back after 7 PM California time. You can send me a private message and I can help you with the details.
FYI: Your brother should stop taking all vitamins as in his condition they could be making his illness worse.
A platelet count of 40 is typical for his condition. But it is nothing to worry about.
Hang in there.
Hector
Have you tried contacting OSU Medical Center in Columbus? Here’s the front desk of the GI/hepatology center:
Outpatient Gastroenterology Clinic
Services Available: Gastroenterology, hepatology
Phone: 614-293-6255
Fax: 614-293-8518
--Bill
Outpatient Gastroenterology Clinic
Services Available: Gastroenterology, hepatology
Phone: 614-293-6255
Fax: 614-293-8518
--Bill
Bill has a good idea. Columbus is closer. Get them to see him even if you have to take him there. Remember to have his medical insurance with him.
They should be able to stabilize him.
Hector
They should be able to stabilize him.
Hector
I have honorary Buckeye status as I worked in Columbus for a few years :o). Good luck to everyone, and let us know what you find out, Chelle--
--Bill
--Bill
Here is all the info on the Cleveland Clinic if you end up taking him there.
http://my.clevelandclinic.org/transplant/about/faq.aspx
Frequently Asked Questions regarding your transplant and our transplant center:
Is there anything I should do while I am still home?
Does Cleveland Clinic accept Medicare Assignment?
How do I get to Cleveland Clinic?
Where do I go when I arrive at the Cleveland Clinic campus?
Where should I park?
What kind of hospital rooms are available?
May I request a specific room beforehand?
Do all the rooms have a telephone and television?
What hotels are near the transplant center?
What should I bring or not bring with me?
Do you provide special services for people with disabilities?
Is smoking allowed in the transplant center?
Is there anything I should do while I am still home?
Yes, there are several important things we ask patients to take care of before they leave home for the transplant center. Make sure that you have complied with any pre-certification or second surgical opinion policies required by your health insurance carrier or employer. Please contact your insurance or employer for pre-admission instructions as soon as possible.
Be sure to advise the person making your hospital reservation and the Patient Access Services Department interviewer if pre-admission certification is required. When you have your pre-admission interview, we will take down all the necessary information then.
You may choose to use Cleveland Clinic's Dial Express pre-registration service, which expedites your interview on the day of your Cleveland Clinic visit. Call 216.445.7377 or 800.223.2273 ext. 57377 within 48 hours of your admission.
Does Cleveland Clinic accept Medicare Assignments?
Yes. As of April 1, 1990, all Cleveland Clinic physicians accept Medicare assignments for fees and services covered by Medicare B (medical insurance). Patients are still responsible for the annual deductible and 20 percent copayment.
Accepting assignment significantly reduces patients’ out-of-pocket expenses.
How do I get to Cleveland Clinic Transplant Center?
Please call our automated direction line at 216.444.9500. If you are arriving at the Cleveland Hopkins airport, it is approximately 40 minutes away; Burke Lakefront airport is approximately 20 minutes away.
Locations and Directions
Where should I go when I arrive at Cleveland Clinic campus?
For a routine hospital admission, please come to the main entrance of Cleveland Clinic, which is located on Clinic Drive, near the intersection of Euclid Avenue and E. 93rd Street. Please check in at Desk H10 in the hospital lobby.
Where should I park at the transplant center?
The closest parking garage to Cleveland Clinic is the Euclid Avenue Parking Garage. One entrance is on Euclid Avenue, between E 93rd. Street (Clinic Drive) and E. 96th Street. If you are being driven to the transplant center you may have your driver bring you to the hospital’s main entrance in Clinic Drive, before the car is parked. Wheelchairs are available at the hospital entrance. There is no charge for parking on the days of admission, discharge or surgery.
What kind of hospital rooms are available?
May I request a specific room beforehand?
Cleveland Clinic has semi-private and private rooms. For some patients, we also offer the Founders Suites (G71), which are elegant suites with their own food service. There is an extra charge for a private room or one of the Founders Suites. We make every effort during admission to provide you with the type of room you desire. However, it is not possible to guarantee a specific accommodation beforehand, because room assignment is based on availability on the day of admission.
Do all rooms at the transplant center have a telephone and television?
Yes. A telephone and color television are provided with all rooms. There is a small daily fee for these services. You will know your telephone number when you check in your room.
What hotels are near the transplant center?
Cleveland Clinic offers two lodging alternatives for out-of- town families and friends of patients admitted to our hospital. The Intercontinental Hotel provides full-service elegance. The Cleveland Clinic Guesthouse is just one block away from the hospital. It offers an economical alternative for overnight or long-term stays. Some rooms have kitchenettes. For reservations for either hotel, call 877.707.8999.
The Alcazar Hotel, located in Cleveland Heights, provides economical long-term lodging. For reservations call 216.321.5400.
Parents of pediatric and adolescent patients may stay at the economically priced Ronald McDonald House, an independently run home-away-from-home, only a short distance from the Cleveland Clinic campus. For reservations, call 216.229.5758.
A Cleveland Clinic shuttle bus runs between the Guesthouse and Cleveland Clinic buildings, including the Omni Hotel and the Ronald McDonald House.
If you need additional information on hotels in the area near the transplant center, contact a Guest Advisor at 216.445.9573 or 216.445.2638.
What should I bring or not bring with me to the transplant center?
Please bring a supply of all prescription medications you are taking; pajamas or nightgown if you prefer to wear your own; a bathrobe and slippers; toothbrush, toothpaste, razor and other personal hygiene supplies. We ask that all nail polish, nail tips, wraps and gels be removed before your arrival because the nurses may need to check your nails to monitor your oxygen level. If you wear contact lenses, please bring a pair of eyeglasses with you too.
Please leave all jewelry and valuables (even items of sentimental value) at home. It is best to leave credit cards and large amounts of cash at home.
Be sure to bring all your health insurance identification cards with you to the transplant center. This is the best way to make sure we have the correct information necessary to bill your insurance company.
Do you provide special services for people with disabilities?
Yes. We provide a number of special services for hospitalized patients with disabilities. These include sign language, interpreters, closed captioned TV converters and portable teletype equipment. During the admission procedure, please let our Registrars know if you need any of these services, and we will do our best to provide them at the transplant center.
Back to Top
Is smoking allowed in the transplant center?
No. Cleveland Clinic has a strong commitment to all our patients’ and employees’ good health. To keep the environment smoke-free, there is no smoking in patients’ rooms or within any building on campus. There are designated smoke areas off hospital grounds.
Hector
http://my.clevelandclinic.org/transplant/about/faq.aspx
Frequently Asked Questions regarding your transplant and our transplant center:
Is there anything I should do while I am still home?
Does Cleveland Clinic accept Medicare Assignment?
How do I get to Cleveland Clinic?
Where do I go when I arrive at the Cleveland Clinic campus?
Where should I park?
What kind of hospital rooms are available?
May I request a specific room beforehand?
Do all the rooms have a telephone and television?
What hotels are near the transplant center?
What should I bring or not bring with me?
Do you provide special services for people with disabilities?
Is smoking allowed in the transplant center?
Is there anything I should do while I am still home?
Yes, there are several important things we ask patients to take care of before they leave home for the transplant center. Make sure that you have complied with any pre-certification or second surgical opinion policies required by your health insurance carrier or employer. Please contact your insurance or employer for pre-admission instructions as soon as possible.
Be sure to advise the person making your hospital reservation and the Patient Access Services Department interviewer if pre-admission certification is required. When you have your pre-admission interview, we will take down all the necessary information then.
You may choose to use Cleveland Clinic's Dial Express pre-registration service, which expedites your interview on the day of your Cleveland Clinic visit. Call 216.445.7377 or 800.223.2273 ext. 57377 within 48 hours of your admission.
Does Cleveland Clinic accept Medicare Assignments?
Yes. As of April 1, 1990, all Cleveland Clinic physicians accept Medicare assignments for fees and services covered by Medicare B (medical insurance). Patients are still responsible for the annual deductible and 20 percent copayment.
Accepting assignment significantly reduces patients’ out-of-pocket expenses.
How do I get to Cleveland Clinic Transplant Center?
Please call our automated direction line at 216.444.9500. If you are arriving at the Cleveland Hopkins airport, it is approximately 40 minutes away; Burke Lakefront airport is approximately 20 minutes away.
Locations and Directions
Where should I go when I arrive at Cleveland Clinic campus?
For a routine hospital admission, please come to the main entrance of Cleveland Clinic, which is located on Clinic Drive, near the intersection of Euclid Avenue and E. 93rd Street. Please check in at Desk H10 in the hospital lobby.
Where should I park at the transplant center?
The closest parking garage to Cleveland Clinic is the Euclid Avenue Parking Garage. One entrance is on Euclid Avenue, between E 93rd. Street (Clinic Drive) and E. 96th Street. If you are being driven to the transplant center you may have your driver bring you to the hospital’s main entrance in Clinic Drive, before the car is parked. Wheelchairs are available at the hospital entrance. There is no charge for parking on the days of admission, discharge or surgery.
What kind of hospital rooms are available?
May I request a specific room beforehand?
Cleveland Clinic has semi-private and private rooms. For some patients, we also offer the Founders Suites (G71), which are elegant suites with their own food service. There is an extra charge for a private room or one of the Founders Suites. We make every effort during admission to provide you with the type of room you desire. However, it is not possible to guarantee a specific accommodation beforehand, because room assignment is based on availability on the day of admission.
Do all rooms at the transplant center have a telephone and television?
Yes. A telephone and color television are provided with all rooms. There is a small daily fee for these services. You will know your telephone number when you check in your room.
What hotels are near the transplant center?
Cleveland Clinic offers two lodging alternatives for out-of- town families and friends of patients admitted to our hospital. The Intercontinental Hotel provides full-service elegance. The Cleveland Clinic Guesthouse is just one block away from the hospital. It offers an economical alternative for overnight or long-term stays. Some rooms have kitchenettes. For reservations for either hotel, call 877.707.8999.
The Alcazar Hotel, located in Cleveland Heights, provides economical long-term lodging. For reservations call 216.321.5400.
Parents of pediatric and adolescent patients may stay at the economically priced Ronald McDonald House, an independently run home-away-from-home, only a short distance from the Cleveland Clinic campus. For reservations, call 216.229.5758.
A Cleveland Clinic shuttle bus runs between the Guesthouse and Cleveland Clinic buildings, including the Omni Hotel and the Ronald McDonald House.
If you need additional information on hotels in the area near the transplant center, contact a Guest Advisor at 216.445.9573 or 216.445.2638.
What should I bring or not bring with me to the transplant center?
Please bring a supply of all prescription medications you are taking; pajamas or nightgown if you prefer to wear your own; a bathrobe and slippers; toothbrush, toothpaste, razor and other personal hygiene supplies. We ask that all nail polish, nail tips, wraps and gels be removed before your arrival because the nurses may need to check your nails to monitor your oxygen level. If you wear contact lenses, please bring a pair of eyeglasses with you too.
Please leave all jewelry and valuables (even items of sentimental value) at home. It is best to leave credit cards and large amounts of cash at home.
Be sure to bring all your health insurance identification cards with you to the transplant center. This is the best way to make sure we have the correct information necessary to bill your insurance company.
Do you provide special services for people with disabilities?
Yes. We provide a number of special services for hospitalized patients with disabilities. These include sign language, interpreters, closed captioned TV converters and portable teletype equipment. During the admission procedure, please let our Registrars know if you need any of these services, and we will do our best to provide them at the transplant center.
Back to Top
Is smoking allowed in the transplant center?
No. Cleveland Clinic has a strong commitment to all our patients’ and employees’ good health. To keep the environment smoke-free, there is no smoking in patients’ rooms or within any building on campus. There are designated smoke areas off hospital grounds.
Hector
First, let me thank you for all of the information you have provided me. You as well as all others have been tremendous help. I have taken your advice and called Jacqui at the Cleveland Clinic. She told me, no one has yet to say my brother (Joe) needed a transplant, so thr first thing to do would be have him seen by a Hepatologist. She transfered me to the scheduling department where they took his information and registered him into the system. Now, Joe does not have health insurance as he has worked on a farm his whole life without heath care coverage. So, with that being said, for self pay patients, they have to be cleared by financial serviced which takes a couple of days. Therefore, I could not get him an appointment as of yet.
Also,
I called OSU and they have said the same thing regarding financial aid and their wait time is two weeks. I am again, finding myself sitting on my hands but, your guidence is very much appreciated. I don't know what else to do at this point. I am willing to pay for the initial consult myself but, no one is willing to see him until he is permited to do so through financial services. This is crazy. If I am willing to pay for the visit, someone should see him. Period.
I have taken him to apply for Social Security and for Medicaid, which both again have become a waiting game. Social Security gave him an appt. time of 11/28 to apply and Medicaid said it could take up to 90 days or even longer to become approved.
Where do I go from here? This is so sad, I feel for those who are in need of medical care and have none.
Also,
I called OSU and they have said the same thing regarding financial aid and their wait time is two weeks. I am again, finding myself sitting on my hands but, your guidence is very much appreciated. I don't know what else to do at this point. I am willing to pay for the initial consult myself but, no one is willing to see him until he is permited to do so through financial services. This is crazy. If I am willing to pay for the visit, someone should see him. Period.
I have taken him to apply for Social Security and for Medicaid, which both again have become a waiting game. Social Security gave him an appt. time of 11/28 to apply and Medicaid said it could take up to 90 days or even longer to become approved.
Where do I go from here? This is so sad, I feel for those who are in need of medical care and have none.
Nobody may have said he needs a transplant but with those symptoms, someone will be saying it soon.
Good luck.
OH
Good luck.
OH
boy that sounds like some good advice you got there...sorry to hear this....i didn't notice any life style info...like did he drink?..of course thats just not something you can do with hep c..and if he did when did he stop?..that matters when going through all this.....good luck...billy
I'm so sorry to hear that it gone that far for your brother without any medical help, this is what I had to do when I had to stop work.
1).Before your brother can get S.S. he will need to have to have proof (medical forms) from his doctors involved explains his medical condition he will be approved but yes it will take up to 3 month. People/Persons with Hep C are accepted immediately accepted for S.S. You can file on line.
2). Go down and file for medical assistance with the Department of Human Services (DHS) it might be under a different name depending where you live (State). There should be no excuse for the State to turn him down. I wish the best for your brother and I'm thankful that you are there for him it's not a time to be alone God Bless you both
1).Before your brother can get S.S. he will need to have to have proof (medical forms) from his doctors involved explains his medical condition he will be approved but yes it will take up to 3 month. People/Persons with Hep C are accepted immediately accepted for S.S. You can file on line.
2). Go down and file for medical assistance with the Department of Human Services (DHS) it might be under a different name depending where you live (State). There should be no excuse for the State to turn him down. I wish the best for your brother and I'm thankful that you are there for him it's not a time to be alone God Bless you both
Hi again, Chelle--
Without health insurance your brother might have to rely on a local primary care doctor to keep him stable until he can be seen by one of the liver clinics. Make sure he applies for SSDI and Medicaid at his earliest convenience; this is stuff you might be able to help him with. It might be a good idea to gather up any medical history he has; labs, procedures, clinical notes from his primary care doctor, etc. in case SSDI asks for this. They will send their own agents out to round this up as well, but gather it up and have it on hand just in case.
Can he afford to private pay in case he has to wait a while for assistance? SSDI can take a while to investigate and provide entitlement; he might end up having to appeal their initial decision(s), unfortunately. Attorneys can help this process along, and will bill against any retro pay coming from an award of benefits. Even after entitlement awards from them, it’s another wait for Medicare to kick in. I’m unaware of how Medicaid is structured in Ohio, but he should apply anyway in hopes he qualifies.
Be sure to ask both the Cleveland Clinic as well as OSU if they maintain compassionate care programs; they might have funds tucked away for cases like his.
Minimally he needs a full set of labs to better assess his condition.
He will require ultrasound and AFP testing
He’ll also require an EGD and perhaps a colonoscopy to rule out varices
He should consult on diet, with emphasis on protein and sodium intake.
The doctor will want to evaluate any meds he is currently taking; be sure he discusses any changes in meds, including OTC meds with the doctor in advance.
Depending on clinical findings, he might require beta blockers to manage portal hypertension.
Other meds, including Lactulose and Rifaximin might be required as well, again depending on clinical findings.
I’m sure there are more things to consider, but this gives some idea of what to expect initially. Again, if he used alcohol in the past be sure he understands he no longer does; this is crucial.
Best of luck to you both,
--Bill
Without health insurance your brother might have to rely on a local primary care doctor to keep him stable until he can be seen by one of the liver clinics. Make sure he applies for SSDI and Medicaid at his earliest convenience; this is stuff you might be able to help him with. It might be a good idea to gather up any medical history he has; labs, procedures, clinical notes from his primary care doctor, etc. in case SSDI asks for this. They will send their own agents out to round this up as well, but gather it up and have it on hand just in case.
Can he afford to private pay in case he has to wait a while for assistance? SSDI can take a while to investigate and provide entitlement; he might end up having to appeal their initial decision(s), unfortunately. Attorneys can help this process along, and will bill against any retro pay coming from an award of benefits. Even after entitlement awards from them, it’s another wait for Medicare to kick in. I’m unaware of how Medicaid is structured in Ohio, but he should apply anyway in hopes he qualifies.
Be sure to ask both the Cleveland Clinic as well as OSU if they maintain compassionate care programs; they might have funds tucked away for cases like his.
Minimally he needs a full set of labs to better assess his condition.
He will require ultrasound and AFP testing
He’ll also require an EGD and perhaps a colonoscopy to rule out varices
He should consult on diet, with emphasis on protein and sodium intake.
The doctor will want to evaluate any meds he is currently taking; be sure he discusses any changes in meds, including OTC meds with the doctor in advance.
Depending on clinical findings, he might require beta blockers to manage portal hypertension.
Other meds, including Lactulose and Rifaximin might be required as well, again depending on clinical findings.
I’m sure there are more things to consider, but this gives some idea of what to expect initially. Again, if he used alcohol in the past be sure he understands he no longer does; this is crucial.
Best of luck to you both,
--Bill
Good news this morning. The Cleveland Clinic had called me back! They said he qualifies for 100 percent discount and they will also help him with medication. I have been given an appointment time of Friday morning at 7:40. I am so thankful for this! Without the information here, I would still be sitting on my hands waiting for people who don't care to help me.
When I took him to the SS office, they gave him an appontment to come back on 11/28 to do the actual application. We have already applied for the Medical but they said it was a minimum of 3 months to hear back. For now, I am hoping to get him stable, he is sleeping a lot, and appears a little more yellowish today, very forgetful. I hope there is something to help him. I hope his GP is wrong and treatment will help him to live a good quality life.
Hector,
I just want you to know, Michelle from Ohio is praying for you. With all of my heart, I appreciate each of you who have reached out to me, and to help me though this. You are an amazing group of people who I hope to continue to get to know as time goes on. God be with us all.
With Great Respect,
Michelle
When I took him to the SS office, they gave him an appontment to come back on 11/28 to do the actual application. We have already applied for the Medical but they said it was a minimum of 3 months to hear back. For now, I am hoping to get him stable, he is sleeping a lot, and appears a little more yellowish today, very forgetful. I hope there is something to help him. I hope his GP is wrong and treatment will help him to live a good quality life.
Hector,
I just want you to know, Michelle from Ohio is praying for you. With all of my heart, I appreciate each of you who have reached out to me, and to help me though this. You are an amazing group of people who I hope to continue to get to know as time goes on. God be with us all.
With Great Respect,
Michelle
I am so thankful for some good advice, yes. As to your question of lifestyle. Yes, Alcohol has been a factor for many years. Howvever, Joe was sober for 2 years until 10/31/2009 when our brother was murdered. Joe fell off the wagon and had spent the past two years consuming some serious alcohol. All the while, never knowing he had any of this going on. On 10/9/2011.. only weeks ago, Joe lost his sister to COPD at the age of 62. Still, Joe was drinking. Since her death, 10/10/11, Joe has been sober. Orginally, He went to the doctor for depression. To help him cope with all of the grief he could not bare. Wanting at that time to never drink again and dedicated to getting back on track. A week after the Dr. Appt. his stomach was swollen, he was in some pain, he was told he was constipated and was given some medication to relieve him of that. A few days later when there was no relief, he went back to the ER, where a doctor did some testing, and told him he had all of this and he should follow up with his GP.
11/4 he was told of the Hep B+C and that he had 6 to 9 mos. to live. This has come about so quickly. Joe continues to be sober with no desire to drink. He is eating healthy but for some reason his eating appears to go on all day and into the night. Always wanting something to eat but never really feeling hungary. I hope this clears up the questions you had. Thank you for your support. God Be With Us All.
Oof, Michelle; this is a huge development! Good for you for advocating for your brother! Cleveland clinic should be able to help quite a bit; how cool is this :o)!
His forgetfulness is typical of someone in his situation; this is likely due to a condition called ‘hepatic encephalopathy’. This occurs as a result of improper protein metabolism, when the liver can no longer filter out toxins in the blood. For the immediate future, your brother will want to avoid red meat; no more beef or pork until he speaks with the doctors on Friday. They will probably start him on a drug called ‘Lactulose’, and maybe Rifaximin. The Lactulose is a non-absorbable sugar that promotes transit time of food through the GI tract; the Rifaximin is an antibiotic. These generally manage the encephalopathy pretty well. Protein remains critical to his diet; so he can take it from beans, chicken, etc. His doctors will elaborate further when he meets them.
Be sure to accompany him to his initial appointment; they’ll likely cover quite a bit of ground and he’ll need a second set of ears along to help him remember what’s been discussed.
Once again, best of luck to you both, and keep in touch-
--Bill
His forgetfulness is typical of someone in his situation; this is likely due to a condition called ‘hepatic encephalopathy’. This occurs as a result of improper protein metabolism, when the liver can no longer filter out toxins in the blood. For the immediate future, your brother will want to avoid red meat; no more beef or pork until he speaks with the doctors on Friday. They will probably start him on a drug called ‘Lactulose’, and maybe Rifaximin. The Lactulose is a non-absorbable sugar that promotes transit time of food through the GI tract; the Rifaximin is an antibiotic. These generally manage the encephalopathy pretty well. Protein remains critical to his diet; so he can take it from beans, chicken, etc. His doctors will elaborate further when he meets them.
Be sure to accompany him to his initial appointment; they’ll likely cover quite a bit of ground and he’ll need a second set of ears along to help him remember what’s been discussed.
Once again, best of luck to you both, and keep in touch-
--Bill
I love this forum you are all so wonderful! I'll be praying for you Chelle and your brother. What an awesome sister he has. So sorry to hear also about your other siblings.
Wow, The Cleveland Clinic comes through!!!! That is fantastic! The Cleveland Clinic is one of the best places in the world for a person with the medical like your brother to be! This is the best news I have heard in quite awhile.
I am very glad your brother stopped drinking. That is a BIG step in the right directions. Cleveland should be able to stabilize him and give him the meds he needs to ease his suffering. They will do a full work up an access your brother's true health condition.
I totally agree with Bill. Please if at all possible go with him as he probably is having thinking and memory problems. Bring a note book and write down and questions you have and write down all the thinks they tell you. This will be overwhelming at first as with anything that is new but you sound very intelligent and you will learn as time goes on Bill and I and others here will help you to understand what is going on as liver disease is very complicated and it takes years to understand all the basics. But it is important to get as much facts as possible so always write thinks down and at some point you'll want to get a copy of all of your brother's medical records yourself.
By the way I also have hepatitis B &C. Being exposed to both has some implications but that is not anything to worry about now. Right now we are in an emergency situation. Let's focus on getting your brother stabilized and as healthy as possible and we will go from there.
Another thing that comes to mind, and I don't think this will be an issue, but I will mention it just in case...For the Cleveland Clinic to help your brother and possibly allow him to be listed for a liver transplant when he needs it it is very important for him to be "compliant". What that means is for him to follow doctor's orders and do what they say. For example he will need to change his diet. It sound simple but some people find it hard to do. He must do it and be honest with the doctors. It is good that he stopped drinking as someone who is drinking will not be able to get a transplant. Or taking any drugs unless prescribed. They will test him for many many drugs and if they were to find out the he was trying to deceive them they could refuse treatment. The care your brother will receive will not only be some of the best in the world but over time and if he should need a transplant will cost hundreds of thousands of dollars. Even his initial workup will cost many tens of thousands of dollars. So this is a once in a lifetime opportunity for your brother to save his life. He is very very lucky to have you as his sister advocating for him. Personally I have never heard of someone being given free treatment for End-Stage Liver Disease (ESLD). I had to prove that I had over a million dollars in health insurance to pay for my transplant and for all the medicines I will require after transplant. Yes, ESLD is not cheap!
Personally during your visit I would find out who made this life-saving exception for your brother and I would write them a thank you note or card. I am very impressed by Cleveland Clinic doing this. It is very tragic but do to our current health system people who don't have health insurance either get sub-optimum health care or none. And in cases like your brother this can lead to people dying because they don't have insurance. From my point of view it is cruel and there should be nobody dying because they don't have insurance. We are the wealthiest country in the world and every other industrial country provides healthcare for there citizens why we don't choose to is really a sad comment on this country IMHO.
Anyone else you can get to go with you would be good too.
Hang in there.
Hector
I am very glad your brother stopped drinking. That is a BIG step in the right directions. Cleveland should be able to stabilize him and give him the meds he needs to ease his suffering. They will do a full work up an access your brother's true health condition.
I totally agree with Bill. Please if at all possible go with him as he probably is having thinking and memory problems. Bring a note book and write down and questions you have and write down all the thinks they tell you. This will be overwhelming at first as with anything that is new but you sound very intelligent and you will learn as time goes on Bill and I and others here will help you to understand what is going on as liver disease is very complicated and it takes years to understand all the basics. But it is important to get as much facts as possible so always write thinks down and at some point you'll want to get a copy of all of your brother's medical records yourself.
By the way I also have hepatitis B &C. Being exposed to both has some implications but that is not anything to worry about now. Right now we are in an emergency situation. Let's focus on getting your brother stabilized and as healthy as possible and we will go from there.
Another thing that comes to mind, and I don't think this will be an issue, but I will mention it just in case...For the Cleveland Clinic to help your brother and possibly allow him to be listed for a liver transplant when he needs it it is very important for him to be "compliant". What that means is for him to follow doctor's orders and do what they say. For example he will need to change his diet. It sound simple but some people find it hard to do. He must do it and be honest with the doctors. It is good that he stopped drinking as someone who is drinking will not be able to get a transplant. Or taking any drugs unless prescribed. They will test him for many many drugs and if they were to find out the he was trying to deceive them they could refuse treatment. The care your brother will receive will not only be some of the best in the world but over time and if he should need a transplant will cost hundreds of thousands of dollars. Even his initial workup will cost many tens of thousands of dollars. So this is a once in a lifetime opportunity for your brother to save his life. He is very very lucky to have you as his sister advocating for him. Personally I have never heard of someone being given free treatment for End-Stage Liver Disease (ESLD). I had to prove that I had over a million dollars in health insurance to pay for my transplant and for all the medicines I will require after transplant. Yes, ESLD is not cheap!
Personally during your visit I would find out who made this life-saving exception for your brother and I would write them a thank you note or card. I am very impressed by Cleveland Clinic doing this. It is very tragic but do to our current health system people who don't have health insurance either get sub-optimum health care or none. And in cases like your brother this can lead to people dying because they don't have insurance. From my point of view it is cruel and there should be nobody dying because they don't have insurance. We are the wealthiest country in the world and every other industrial country provides healthcare for there citizens why we don't choose to is really a sad comment on this country IMHO.
Anyone else you can get to go with you would be good too.
Hang in there.
Hector
Here are some sample questions for you and an overview of what will happen at the Clinic.
Please read the Cleveland Clinic's Web Site it is excellent before the visit.
http://my.clevelandclinic.org/patients-visitors/prepare-appointment/appointment-checklist.aspx
*****The Cleveland Clinic Appointment Checklist****
Contact Us
Appointments
Call Us Toll Free:
866.223.2273 x1234
*****Before Your Appointment****
Depending upon the reason for your doctor’s visit, this checklist can help you prepare.
Gather documents to bring to your doctor’s visit:
- Copies of any tests, x-rays, or medical histories relating to your medical problem.
Completed medical history questionnaire.
A list of all current medications taken on a regular basis, including over-the-counter and herbal medications.
Review any special directions from your doctor about diet or medication restrictions prior to your appointment.
- Ask friends or relatives to accompany you if you wish. Depending on the type of appointment you have, you may need someone to take you home.
- Bring a sweater or coat. Our buildings are kept cool to protect and ensure the proper function of medical equipment.
******During Your Appointment*****
To make the most of your appointment, be sure to ask your doctor any questions or express any concerns you have.
Not sure what to ask? Find suggestions:
**** Questions to Ask Your Doctor****
We encourage you to be fully informed about your health. Below, find suggested questions to ask your doctor. They may or may not relate to you, depending upon the disease or condition.
About Your Symptoms or Diagnosis
What is the disease or condition?
How serious is my disease or condition and how will it affect my home and work life?
What is the short-term and long-term prognosis for my disease or condition?
What caused the disease or condition?
Is there more than one disease or condition that could be causing my symptoms?
Should I be tested for a certain disease or condition?
What symptoms should I watch for?
How can I be tested for a disease or condition, and what will these tests tell me?
What tests will be involved in diagnosing my disease or condition?
How safe and accurate are the tests?
When will I know the test’s results?
Will I need more medical tests?
Do I need a follow-up visit and if so, when?
Do I need to take precautions to avoid infecting others?
How is the disease or condition treated?
About Your Treatment
What are my treatment options?
How long will the treatment take?
What is the cost of the treatment?
Which treatment is most common for my disease or condition?
Is there a generic form of my treatment and is it as effective?
What side effects can I expect?
What risks and benefits are associated with the treatment?
What would happen if I didn’t have any treatment?
What would happen if I delay my treatment?
Is there anything I should avoid during treatment
What should I do if I have side effects?
How will I know if the medication is working?
What would I do if I miss a dose of medication?
Will my job or lifestyle be affected?
What is my short-term and long-term prognosis?
If You Need Surgery
Why do I need surgery?
What surgical procedure are you recommending?
Is there more than one way of performing this surgery?
Are there alternatives to surgery?
How much will surgery cost?
What are the benefits of having surgery?
What are the risks of having surgery?
What if I don’t have this surgery?
Where can I get a second opinion?
What kind of anesthesia will I need?
How long will it take me to recover?
What are your qualifications?
How much experience do you have performing this surgery?
How long will I be in the hospital?
After Your Appointment
What to expect after your appointment:
- If you need to see another doctor, we will make every effort to schedule additional tests and consultations at the earliest available time.
- If you need to be hospitalized, we will coordinate admitting arrangements and provide the hospital with information prior to your arrival.
Hector
Please read the Cleveland Clinic's Web Site it is excellent before the visit.
http://my.clevelandclinic.org/patients-visitors/prepare-appointment/appointment-checklist.aspx
*****The Cleveland Clinic Appointment Checklist****
Contact Us
Appointments
Call Us Toll Free:
866.223.2273 x1234
*****Before Your Appointment****
Depending upon the reason for your doctor’s visit, this checklist can help you prepare.
Gather documents to bring to your doctor’s visit:
- Copies of any tests, x-rays, or medical histories relating to your medical problem.
Completed medical history questionnaire.
A list of all current medications taken on a regular basis, including over-the-counter and herbal medications.
Review any special directions from your doctor about diet or medication restrictions prior to your appointment.
- Ask friends or relatives to accompany you if you wish. Depending on the type of appointment you have, you may need someone to take you home.
- Bring a sweater or coat. Our buildings are kept cool to protect and ensure the proper function of medical equipment.
******During Your Appointment*****
To make the most of your appointment, be sure to ask your doctor any questions or express any concerns you have.
Not sure what to ask? Find suggestions:
**** Questions to Ask Your Doctor****
We encourage you to be fully informed about your health. Below, find suggested questions to ask your doctor. They may or may not relate to you, depending upon the disease or condition.
About Your Symptoms or Diagnosis
What is the disease or condition?
How serious is my disease or condition and how will it affect my home and work life?
What is the short-term and long-term prognosis for my disease or condition?
What caused the disease or condition?
Is there more than one disease or condition that could be causing my symptoms?
Should I be tested for a certain disease or condition?
What symptoms should I watch for?
How can I be tested for a disease or condition, and what will these tests tell me?
What tests will be involved in diagnosing my disease or condition?
How safe and accurate are the tests?
When will I know the test’s results?
Will I need more medical tests?
Do I need a follow-up visit and if so, when?
Do I need to take precautions to avoid infecting others?
How is the disease or condition treated?
About Your Treatment
What are my treatment options?
How long will the treatment take?
What is the cost of the treatment?
Which treatment is most common for my disease or condition?
Is there a generic form of my treatment and is it as effective?
What side effects can I expect?
What risks and benefits are associated with the treatment?
What would happen if I didn’t have any treatment?
What would happen if I delay my treatment?
Is there anything I should avoid during treatment
What should I do if I have side effects?
How will I know if the medication is working?
What would I do if I miss a dose of medication?
Will my job or lifestyle be affected?
What is my short-term and long-term prognosis?
If You Need Surgery
Why do I need surgery?
What surgical procedure are you recommending?
Is there more than one way of performing this surgery?
Are there alternatives to surgery?
How much will surgery cost?
What are the benefits of having surgery?
What are the risks of having surgery?
What if I don’t have this surgery?
Where can I get a second opinion?
What kind of anesthesia will I need?
How long will it take me to recover?
What are your qualifications?
How much experience do you have performing this surgery?
How long will I be in the hospital?
After Your Appointment
What to expect after your appointment:
- If you need to see another doctor, we will make every effort to schedule additional tests and consultations at the earliest available time.
- If you need to be hospitalized, we will coordinate admitting arrangements and provide the hospital with information prior to your arrival.
Hector
Hi. I few more comments about your brother before being taken care of on Friday.
"appears a little more yellowish today, very forgetful. I hope there is something to help him. I hope his GP is wrong and treatment will help him to live a good quality life."
IMPORTANT POINT. Until your brother see's the doctor on Friday he should NOT be left alone. He could get sicker and be unable to help himself while he is having a life-threatening complication of his disease.
I don't say this to scare you but as someone who has has been very ill for 2 years and had many friends who have suffered with these complication it is good just to be aware of these possible dangers.
The yellow color is called "jaundice" it is caused by rapid increase in the breakdown and destruction of the red blood cells (hemolysis), overwhelming the liver's ability to adequately remove the increased levels of bilirubin from the blood. In itself it isn't dangerous but it is a sign that your brother's liver is not function properly. He may feel tired, nauseous, his skin my be itchy.
As long as your brother can be stabilized and doesn't have other heath issues he should be able to get a liver transplant and will continue to live for many years. Yes your brother's liver is failing like mine but a transplant with get us a new liver and we can continue to live and recover our health after the transplant. It is no easy thing but many people have done it and I have many friend who are alive today thanks to getting transplant.
While you and your brother are waiting for the appointment on Friday I just wanted to tell you about thinks to look out for as they could be a sign of your brother getting worse and could not life-threatening. If any of these things seems to be happening get him to ER ASAP.
I think you said that your brother's abdomen is swollen. If this is the case if for any reason he gets a fever he needs to go to ER. It is possible for the fluid to get infected and any infections in a person in his condition could be fatal.
"Ascites" is fluid buildup in the abdominal cavity. It is uncomfortable and can reduce breathing function and urination.
"Hepatorenal syndrome" occurs if the kidneys drastically reduce their own blood flow in response to the altered blood flow in the liver. It is a life-threatening complication of late-stage liver disease that occurs in patients with ascites. Symptoms include dark colored urine and a reduction in volume, yellowish skin, abdominal swelling, mental changes (such as delirium and confusion), jerking or coarse muscle movement, nausea, and vomiting.
If you brother starts vomiting blood or black and tarry stools he needs to go to ER immediately! This condition is caused by internal bleeding.
You say you brother is confused. This is a common symptoms of advanced liver disease. It is called hepatic encephalopathy or HE for short. If your brother should develop stupor (acting like he is drunk, failing down, slurred speech) or become unconscious and go into a coma he needs emergency care.
Take care.
Hector
"appears a little more yellowish today, very forgetful. I hope there is something to help him. I hope his GP is wrong and treatment will help him to live a good quality life."
IMPORTANT POINT. Until your brother see's the doctor on Friday he should NOT be left alone. He could get sicker and be unable to help himself while he is having a life-threatening complication of his disease.
I don't say this to scare you but as someone who has has been very ill for 2 years and had many friends who have suffered with these complication it is good just to be aware of these possible dangers.
The yellow color is called "jaundice" it is caused by rapid increase in the breakdown and destruction of the red blood cells (hemolysis), overwhelming the liver's ability to adequately remove the increased levels of bilirubin from the blood. In itself it isn't dangerous but it is a sign that your brother's liver is not function properly. He may feel tired, nauseous, his skin my be itchy.
As long as your brother can be stabilized and doesn't have other heath issues he should be able to get a liver transplant and will continue to live for many years. Yes your brother's liver is failing like mine but a transplant with get us a new liver and we can continue to live and recover our health after the transplant. It is no easy thing but many people have done it and I have many friend who are alive today thanks to getting transplant.
While you and your brother are waiting for the appointment on Friday I just wanted to tell you about thinks to look out for as they could be a sign of your brother getting worse and could not life-threatening. If any of these things seems to be happening get him to ER ASAP.
I think you said that your brother's abdomen is swollen. If this is the case if for any reason he gets a fever he needs to go to ER. It is possible for the fluid to get infected and any infections in a person in his condition could be fatal.
"Ascites" is fluid buildup in the abdominal cavity. It is uncomfortable and can reduce breathing function and urination.
"Hepatorenal syndrome" occurs if the kidneys drastically reduce their own blood flow in response to the altered blood flow in the liver. It is a life-threatening complication of late-stage liver disease that occurs in patients with ascites. Symptoms include dark colored urine and a reduction in volume, yellowish skin, abdominal swelling, mental changes (such as delirium and confusion), jerking or coarse muscle movement, nausea, and vomiting.
If you brother starts vomiting blood or black and tarry stools he needs to go to ER immediately! This condition is caused by internal bleeding.
You say you brother is confused. This is a common symptoms of advanced liver disease. It is called hepatic encephalopathy or HE for short. If your brother should develop stupor (acting like he is drunk, failing down, slurred speech) or become unconscious and go into a coma he needs emergency care.
Take care.
Hector
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