Handout Summary of My Journey
The rest of this document is a summary of information gathered along my journey. I freely share it with caregivers and patients that are riding through the journey of the transplant experience. I am constantly updating this summary because travelers need the most up to date information to navigate through the journey. Any source of additions or improvements is always welcome. I always caution people that I am not a doctor nor have any real medical training. Any advice or suggestions I make are my own opinions and the reader should consult their own medical team for specific questions and advice.
Successfully Transplanted, Healthy, Happy and Living life fully every day! A primer for people waiting for a liver transplant and their caregivers
I had a long journey thru very deep depths of cirrhosis. I spent a lot of time in the hospital or rehab due to extended periods of Hepatic Encephalopathy (HE), sky rocketing blood glucose levels (Type II Diabetes), e Coli from some unknown source and a variety of other problems. Only after the depths of negative health incidents did I really get serious about getting an organ transplant. I switched doctors as my old ones had seen me thru my drinking years and apparently did not think I would be alive long enough to go thru the process.
I'm here because I want to help people with all types of organ transplants. I have had a liver transplant but share many common problems with other type of organ transplants. I really enjoy spreading the word about organ transplantation and trying to shatter myths. I won't sugar coat anything, especially the causes of my own disease.
I no longer have any real guilt about causing my own problem but I do have regrets. Alcoholic cirrhosis patients are not only still fighting/recovering our addiction (we always will) but also tend to deep bouts of depression and guilt over whether we are worthy of a transplant. Even two years post-transplant I occasionally have these thoughts. I have come to realize that if I accept my gift with the duty of responsibility to help others I can move beyond feelings of guilt when the thoughts pass thru my mind.
There is absolutely wonderful website that describes everything one every needs to know about cirrhosis. A fellow “traveler” has compiled a site with information about the disease, what its symptoms are and how it is treated. Visit Living with Cirrhosis to see what I mean. Another great site that I use to track my medical data is Patients Like Me. They also have a great forum that compliments other support groups.
I have been involved with several groups at my transplant center. One group is for the people waiting for their transplant and the other is for their caregivers. I go to share my experience throughout the process and answer either groups questions. The groups meet concurrently, but separately to address the specific needs of the two groups. Sometimes there are joint meetings for topics that are relevant to both groups like a surgeon’s presentation on the actual operation. You should look to see if you have similar groups available at your center or your community. Talk to your Medical Social Worker (MSW) to see what is available.
I often relate the following advice to the people I meet to prepare and endure the waiting period:
1. Learn as much as you can about the disease and transplantation—there is a massive amount of information on the web. One of the better sites that I have found is Organ Donors. Check out your (or any!) transplant center’s web site or the “organ specific foundation” sites like National Kidney Foundation, American Liver Foundation,
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American Heart Association or American Lung Association. You’ll find additional links on these sites to more information are plentiful! You can always contact me if you need more help finding information.
2. Remember that you are a vital part of the transplant team—all of your doctors, nurses, social workers AND YOU are all working towards a common goal. Become a trusted member by demonstrating compliance to treatment and by gaining knowledge about everything along the way. Use your transplant team well—be brutally honest about symptoms, emotions and drug reactions—they really know what they are doing and can help when you need it. Always, always, always do everything that your team tells you to do. Make sure to keep yourself or your loved one on schedule with ALL prescribed meds—it really, really matters!
3. Encourage yourself or your loved one to get in the best physical shape possible—it helps pass the time and will pay-off in recovery time. Remember to consult with your team about what type and how much exercise you or your loved one should get as well as your progress. I think your team will provide lots of encouragement!
4. Don't get caught up worrying about your place on the list-it will happen before you know it. All of the different UNOS “lists” are really just a pool of people waiting for an organ. Only when an organ becomes available do individuals form a list of potential candidates to receive that organ. UNOS rules dictate who actually receives the organ based on (and I’m not sure of the sequence here) how good of a match the donor is to the recipient, geographical proximity, how urgent the candidate needs to be transplanted, and sometimes how long a candidate has been waiting for an organ. Talk to your team to find out specifics for your type of organ(s). The United Network for Organ Sharing is another good source of information.
5. Prepare all the necessary documents, i.e. HIPAA release forms, advanced health care directive (Living Will), power of attorney-health care, organ and tissue donor registration and your will. This is for both your and your caregiver’s peace of mind. Your caregivers need to have access to your medical information to facilitate interaction with your team.
6. If you are working and need to stop, see if your employer has short and long term disability insurance. You’ll need to complete the necessary applications for benefits. Look at COBRA coverage in your current health insurance for coverage. COBRA costs more than you have been paying but ensures you still have the same coverage. Check your spouse’s employer for health then try to get on their health insurance. The key is to provide continuous coverage so you don’t run into issues with “pre-existing conditions” until health reform legislation eliminates this barrier to having health insurance at an affordable rate.
7. File for Social Security Disability Insurance (SSDI) as soon as possible. Some people experience problems getting approval so you need to be insistent with the appeal process if necessary. My own application sailed through on the first application, probably due to how sick I was at the time. Make sure you complete every little requirement and provide all information required. Get copies of all of medical records pertaining to your current condition. Remember there is a six-month wait between the date you become eligible for SSDI (disability date) and your first benefit payment. Your disability date is when you or your loved one became disabled, not the date of application. You cannot get “retroactive” payments if your disability date is longer than six months previous to your application. Medicare coverage won’t kick in for two years from the eligibility date. Before your Medicare benefits start select a Medicare Part D plan that has your medications in their drug formulary. Try to find additional coverage in a Medicare Supplement Plan that provides drug benefits when you hit the “donut hole”. My Medicare coverage did not start until after my transplant so I don’t know if I would have reached the donut hole with my pre-transplant meds.
There are some specific questions that I receive in the support groups that I have been working with. I thought I’d like to bring to this forum, as the questions seem to be general enough that everyone has them. These are all good questions that I would like to share my experiences to help everyone:
What was your MELD score?
First of all, just to explain a little more about how MELD and "transplant waiting list" relate:
Let's recap what MELD represents. Everyone, even "healthy, normal, people" have a MELD as its basis in in the results of three blood tests as others have pointed out. As the liver starts to fail, the blood test results change thus changing the MELD's base value. Additional adjustments to the MELD occur based on additional conditions of the patient. These include, but are not limited to, things like portal vein thrombosis (PVT) or hepatocellular carcinoma (HCC, aka liver cancer). I believe there is a bias depending on the type of liver disease. MELD values indicate the patient’s relative health: the higher the value, the sicker the patient.
When organs become available, they are evaluated (tested) to see if they are viable and establish the criterion for matching to the pool of patients that have been placed on the waiting list. All patients with matching criteria form an actual list ranked by the patient's current MELD value. The organ becomes available to the patient with the best matching criteria based on rules set by the United Network for Organ Sharing (UNOS). UNOS is the private, non-profit organization that manages the nation's organ transplant system under contract with the federal government. Some of the rules involve proximity between the candidate recipient and the organ donor as time is a critical factor to successful transplantation. The rules also allow for some leeway in some of the matching criteria depending on the condition of the organ and the MELD of individuals on the candidate donor list.
Personally, my MELD was 14 when I got on the list and was 23 at the time of transplant.
How long did you have to wait before your transplant?
Everyone’s waiting time will be different. You have to understand what the MELD represents to determine organ allocation to appreciate what is going on while you are waiting. See discussion above on MELD scores. I was UNOS listed in February 2008 and my transplant was in July 2008, so my wait time was about 5-6 months after officially listed.
Did you have a lot of pain?
I’m going to presume we’re talking about pain related to the transplant: I guess the answer to this is both “yes” and “no”! The operation is major surgery so “yes” there is some pain in the recovery process but your team will help you manage it. I actually kind of enjoyed the pain (and the meds) because it was so different from the pain of liver failure. Beyond recovery I sometimes have some phantom pain at my incision site and also where some of the nerve endings are still repairing themselves. Any pain that I have now is minor and is totally livable versus the alternative.
Do you now take medication for the rest of your life?
Yes. After transplant you will be taking some sort of immunosuppressant drug or even multiple immunosuppressant drugs so that your body's immune system does not attack your new organ. Your BODY will always think your new organ is a foreign "thing". These drugs cause your body to produce fewer white blood cells, which are the "army" the body sends to "attack" invading foreign things. Normally white cell counts (WBC) rise when you have an infection-a "good thing". So post-transplant living is always a WBC balancing act. Personal hygiene is extremely important after transplant! Keeping your hands clean and away from your face is just as important as making sure that the air that you are breathing is as germ free as possible to minimize the risk of infection.
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One of the types of immunosuppressants used, particularly right after surgery, is a synthetic corticosteroid drug called prednisone. This drug may play havoc on a patient’s blood glucose (BG) levels. You may become diabetic while taking prednisone or, if you are already a diabetic, your blood glucose levels may be harder to control. Make sure to work with your team to resolve BG issues. After transplant you will still take pretty much the same meds for any underlying conditions that you may have. Some of the dosages may change. In addition to your existing meds and the immunosuppressant(s) you may, at least initially, take several additional meds to help avoid infections or deal with other, post-surgical, issues.
Is there a lot of your medication not covered by insurance?
I have not really had a problem with insurance coverage of my meds. I am now on Medicare, have a Part D plan and also a supplement plan. The supplement plan is from Wisconsin’s High Risk pool, which was where I had coverage after my COBRA benefits ran out after transplant. The immunosuppressants are all fairly expensive so most recipients will reach the “donut hole” pretty early in the year-I reached it in May. My supplement plan covers the gap so all I have to pay (besides the premium!) is co-pay.
How long have you had your new liver?
My surgery was on July 9, 2008 so, at this writing, it was just over 2 years ago. I celebrate the day as if it was another birthday. Every day I thank my donor and his family. All I presently know about my donor is that he was two years younger than I was at the time of his death and that he was from the same area of the state where I live. I am now an enthusiastic advocate (my wife says “fanatic”) of organ and tissue donor registration but that is an entirely different subject.
What care did you need after getting out of the hospital?
I would have to say that my biggest need for assistance from my own caregivers was moral support. The confusion from before transplant was still present and it just added to the confusion of the surgery itself, not to mention the effects of all the new medications. Beyond that I was determined to do as much for myself as possible. I still had to lean on my caregivers from time to time on some things though. I struggled with trying to figure out my new meds—both in identifying the pills themselves but also with making sure I took them on schedule and in the right dosage (some of the med dosages were for multiple tablets or capsules). I dealt with my own transportation to and from lab and doctors’ appointments. I still needed to eat and have a clean environment (I do most of the cleaning now—my way of paying my caregivers back!). For me, life quickly became pretty “normal” for a change.