Hey everyone!
I’m a little behind still but I’m getting a little more caught up. I have read a lot of different threads where we are discussing “stages” of cirrhosis, HE and other aspects of this terrible disease. Bobbi already reposted part of a discussion that I started a little while ago, but I’d like to continue and elaborate a little more…
Knowing what stage of the disease that we are in does serve a purpose, but we need to be careful about how much value we place in this knowledge. When we are in early stages, we need to take actions with our life habits and diet. In all stages we need to be aware of the complications and symptoms that we might experience so that we are able to react accordingly with medications or hospital treatment. Beyond that, we cannot afford to expend the energy worrying about just how sick we are!
In the post that Bobbi referred to I also discussed not getting hung up on MELD scores in terms of measuring how just how ill a patient is. Yes, it does indicate, to a certain extent, how close one may be to transplant time. No, it does not mean that a patient with a MELD of 15 is any sicker that a patient with a MELD of 14, MELD is just a mathematical function of the conditions currently presenting. Even in terms of "being on the list", MELD does NOT provide any degree of how much longer a patient will wait for a transplant, which, as I discussed previously, depends on a suitable, matching, organ becoming available before the MELD even comes into play. I remember that I always wanted to know my MELD. My TX center would not give it to me and they didn't routinely give all of the blood test results (they would always leave out one of the test results). It was their way of making the point that I am trying to make here.
I was in an offline support meeting the other day and we happened to discuss a different set of stages. I really think we all need to be aware of these stages as patients and as caregivers. The Kübler-Ross model, commonly known as the five stages of grief. The model describes a process by which people deal with grief and tragedy, especially when diagnosed with a potentially terminal illness or catastrophic loss.
I found the following discussion of the Kübler-Ross model in Wikipedia and quote it without permission. Please forgive the plagiarism and accept the reference to the site.
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The progression of stages is:
- Denial—"I feel fine."; "This can't be happening, not to me."
Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of positions and individuals that will be left behind.
- Anger—"Why me? It's not fair!"; "How can this happen to me?"; "Who is to blame?"
Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Any individual that symbolizes life or energy is subject to projected resentment and jealousy.
- Bargaining—"Just let me live to see my children graduate."; "I'll do anything for a few more years."; "I will give my life savings if..."
The third stage involves the hope that the individual can somehow postpone or delay a negative ending. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, "I understand I am sick or may die, but if I could just have more time..."
- Depression—"I'm so sad, why bother with anything?"; "I'm going to die... What's the point?"; "I miss my loved one, why go on?"
During the fourth stage, the individual begins to understand the certainty of their situation. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the individual to disconnect from things of love and affection. It is difficult to attempt to cheer up an individual who is in this stage. It is an important time for grieving that must be processed.
- Acceptance—"It's going to be okay."; "I can't fight it, I may as well prepare for it."
In this last stage, the individual begins to come to terms with his disease and/or mortality or that of his loved one.
Dennis’ note: Acceptance is also the stage that we move forward in our treatment, looking for a positive outcome. This is the time that we begin to take care of ourselves as best we can; living each day for what it is working towards a future that may exist if we can get a transplant in time! It happened for me!
Kübler-Ross originally applied these stages to people suffering from terminal illness, later to any form of catastrophic personal loss (job, income, freedom). This may also include significant life events such as the death of a loved one, divorce, drug/alcohol addiction, the onset of a disease or chronic illness, an infertility diagnosis, as well many tragedies and disasters.
Kübler-Ross claimed these steps do not necessarily come in the order noted above, nor are all steps experienced by all patients, though she stated a person would always experience at least two. Often, people will experience several stages in a "roller coaster" effect—switching between two or more stages, returning to one or more several times before working through it.
Significantly, people experiencing (or caretakers observing) the stages should not force the process. The grief process is highly personal and should not be rushed, nor lengthened, on the basis of an individual's imposed time frame or opinion. One should merely be aware that the stages will be worked through and the ultimate stage of "Acceptance" will be reached.
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I hope this helps!
Dennis
PS: CapeDrifter just posted a diary entry that really illustrates these points. Funny how kismet plays a part in our lives! Please read his diary entry on "Fussy Liver Phylogenesis...". It is a very poignant example of "acceptance". Well done, CD!
Post edited by: dmanflan, at: 02/13/2011 12:11 PM
(and Of course not, Can you spell r-e-l-i-e-f?) WE WUB U!