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1896835 tn?1321576203

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
86 Responses
201379 tn?1319994931
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.
Avatar universal
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
87972 tn?1322664839
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
87972 tn?1322664839
Link to MELD calculator:

http://www.mayoclinic.org/meld/mayomodel6.html
1896835 tn?1321576203
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.
446474 tn?1446351282
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
87972 tn?1322664839
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
446474 tn?1446351282
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
87972 tn?1322664839
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
446474 tn?1446351282
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

1896835 tn?1321576203
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.
1896835 tn?1321576203
Thanks a million, Bill. You have been very helpful. I will stay in touch.
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