By Bob Aronson
Having suffered from post transplant depression myself, I know of what I speak. It hits you like a sledge hammer and keeps pounding away. The pain isn’t physical, it’s emotional and it can be intense, so intense that some consider taking their own lives. Worst of all, few if any of your family and friends understand and some become impatoemt. dsksdddddddddddddlkkkkkkkkkkkkkksddddddddddddddddddddddddddddddddddddddddddddddddddlddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddccsssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssjnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssss with your continued mood swings. They don’t even have the most basic understanding of the disease. While their intentions are good, their advice usually isn’t. They will say things like, “Buck up, My God your’re alive, you got a new heart and you’re alive.” To that I can only say, “I would be happy to buck up if I could, but I can’t. Noone would choose to live like this You can feel useless, unnecessary, irrelevant and totally without purpose. Some patients even feel suicidal, but it doesn’t have to be that way. There is help.
If there’s one message you should take away from this blog, it is this. Depression is not your fault, you did not cause it and therefore you alone can not fix it. “Cheer up, look at the bright side,” may sound like good advice but it isn’t because it assumes you decided to feel lousy. Who on earth would choose to be depressed? It is sad, but true that sometimes even the people closest to you don’t understand. They continue to hold on to the belief that you can snap out of it if you really want to. The reality of depression just isn’t that simple. Frankly, it is very, very complex and takes highly skilled and trained professionals to help you find your way back to the sunny side of the street.
Unfortunately if you have had or if you are going to have an organ transplant, chances are good that you might fall victim to post transplant depression. Estimates of how many patients become depressed following an organ transplant range from 10 percent all the way up to 50%, but no matter what the percentage the fact is that some people will have serious emotional struggles following their transplant.
One can easily ask, “Depression? Why on earth would anyone be depressed after their life has been saved by the donor/transplantation process?” Well, there are a number of reasons, chief among them is the haunting feeling that someone had to die in order for you to live. The fact is, the person who died, would have died anyway whether they were an organ donor or not and if they were, someone might gain new life as a result, but that’s logic and logic alone cannot solve the problem and help the patient. Besides, there are other issues that contribute to depression like:
- Living with the psychological highs and lows that are sometimes caused by immunosuppressives such as corticosteroids
- The steroids you take can have the effect of a mood amplifier. In the first few weeks, especially, when the doses are highest, the medicine will wind you up and make it hard to sleep. The sudden changes in the family — and in your behavior — can be extreme.
- Managing a complex post-transplant regimen that encompasses: (1) multiple meds and schedules, (2) monitoring vital signs, (3) exercise and dietary requirements, (4) regular medical evaluations and lab tests, and (5) lifestyle restrictions on smoking, alcohol, and other potentially harmful substances
- Major life alterations such as transitioning from being critically ill or dying patients and family caregivers to roles that are more wellness-focused)
- Coping with new and taxing financial and economic issues like the cost of transplant surgery, hospital stays, follow-up care, cost of drugs and health insurance.
To some that list of changes is so overwhelming as to be nearly impossible to manage. Some have been seriously ill for such a very long time and so focused on dying that they cannot adjust to an attitude that centers on life and living. What is even worse is that unless the patient is getting professional psychiatric help he or she may not be able to identify a single stressor that brought on their depressed state.
Simply put, depression is a mood disorder that causes a persistent feeling of sadness and loss of interest in those things that had been of great importance. It affects how you feel, think and behave and can lead to a variety of problems. Day to day activities become ponderous and boring and patients sometimes feel their lives are not worth living.
Depression isn’t just feeling “down” and you can’t just “snap out of it.” It can require long-term treatment with either medication, psychological counseling or a combination of the two. Above all you must know that suffering from depression is not a personal weakness. You didn’t bring it on and will power alone cannot defeat it.
Depression can occur once or several times in a lifetime and according to the Mayo Clinic (http://tinyurl.com/ouory9u) the symptoms can appear all day, every day and may include:
- Feelings of sadness, tearfulness, emptiness or hopelessness
- Angry outbursts, irritability or frustration, even over small matters
- Loss of interest or pleasure in most or all normal activities, such as sex, hobbies or sports
- Sleep disturbances, including insomnia or sleeping too much
- Tiredness and lack of energy, so even small tasks take extra effort
- Changes in appetite — often reduced appetite and weight loss, but increased cravings for food and weight gain in some people
- Anxiety, agitation or restlessness
- Slowed thinking, speaking or body movements
- Feelings of worthlessness or guilt, fixating on past failures or blaming yourself for things that aren’t your responsibility
- Trouble thinking, concentrating, making decisions and remembering things
- Frequent or recurrent thoughts of death, suicidal thoughts, suicide attempts or suicide
- Unexplained physical problems, such as back pain or headaches
For many people with depression, symptoms usually are severe enough to cause noticeable problems in day-to-day activities, such as work, school, social activities or relationships with others. Other people may feel generally miserable or unhappy without really knowing why. http://tinyurl.com/lgsq8hm
(Material gathered here comes from several sources primary among them is UNOS (the United Network for Organ Sharing).
What happens after transplantation depends on the organ transplanted and the recipient’s specific medical situation. Most patients recover fully, return to work and resume a normal, active life after receiving a new organ. However, there is a possibility of developing unrelated health problems after transplantation. That’s why it is important to work closely with your doctor concerning your overall wellness, as well as regarding the following health concerns:
Anxiety and Depression
Patients and their families face a new lifestyle after transplantation that may cause them to feel nervous, stressed or depressed. Because emotional and psychological support is a continuing process, ask your social worker about counseling services that can help you and your family deal with these changes. Professionals can help you work through concerns about your self-image; mood swings; job planning; rehabilitation; family stresses, such as parent-child conflicts, marital conflict or changes in sexual functioning; and financial concerns, such as questions about Medicare, disability or insurance. Any and all of the following can contribute to your depression and/or anxiety.
Some anti-rejection medicines are known to cause high blood sugar. Although it is typically a temporary condition after transplantation, it is more common in patients who have a family history of diabetes and patients who are overweight. It can be controlled by reducing the dose of a patient’s anti-rejection medicines or changing medications all together.
GI (gastrointestinal) or stomach upset is also a common complaint after a transplant. Patients on steroid therapy may be at an increased risk of developing ulcers due to increased hydrochloric acid from the stress of the procedure. Treatment of GI upset may include one or a combination of drugs that reduce acid production. In addition, people with GI upset should take several steps to reduce symptoms, including:
- Reducing the intake of caffeine, alcohol and over-the-counter medications that cause GI upset.
- Eliminating carbonated drinks can help
- And it sometimes helps to take your meds with food to decrease irritation.
Gout is a painful and potentially disabling form of arthritis. Diagnosing gout can be difficult and treatment plans vary based on a patient’s existing medical problems and medications. Often Gout will show up in the big toe and it is very painful. Sometimes even a bedsheet touching the Gout area will result in extreme pain.
Many immunosuppressant drugs can contribute to high cholesterol. This condition therefore affects many transplant recipients. When a patient develops high cholesterol, blood vessels, including the ones attached to the transplanted organ, become clogged, which affects the flow of blood. This slowing of blood flow can affect the success of your transplant and may even lead to heart disease. It is important to talk to your doctor about how to reduce the risk factors of heart disease, including controlling your cholesterol.
Hypertension, or high blood pressure, is common immediately after
transplant. Certain anti-rejection medications, as well as the original disease, all can contribute to hypertension. Treatment of hypertension may include one or a combination of drugs, and often, as anti-rejection medicines are tapered to a maintenance dose, hypertension may decrease. Talk to your doctor about what’s right for you and how to avoid high blood pressure.
Sexual concerns after transplantation are commonly experienced, yet seldom discussed or addressed during evaluation. It is therefore very important to talk with your doctor about your sexual history and concerns.
However, sexual function and interest can be related to how well your body has accepted your new organ and how realistic your expectations were for life after your transplant. A counselor can also help a couple understand the difference between pre- and post-transplant problems. Often, support groups can be very helpful in this regard.
Additionally, in sexual relations, as in all issues, recipients must remember that they are immune suppressed and subject to many kinds of infections. In fact, some infections in recently transplanted patients can be potentially life threatening. Consequently, it is important to consider the following points:
- The sharing of saliva during kissing can expose both partners to active diseases, such as colds or other viruses.
- Condoms don’t prevent diseases that are spread by contact between the area surrounding the penis and external genitals.
- The risk of contracting infectious diseases though oral sex is possible, especially if ejaculation occurs or if there are any sores or wounds on either partner.
People with weakened immune systems, such as transplant recipients treated with immunosuppressive drugs, risk developing shingles. Shingles is a painful infection of the central nervous system caused by the Varicella virus that causes a blistering rash and severe burning pain, tingling or extreme sensitivity to the skin and is usually limited to one side of the body. The severity and duration of an attack of shingles can be significantly reduced by immediate treatment with antiviral drugs. You should also ask your doctor about getting the Shingles vaccine.
Sometimes our own irresponsible behavior is responsible for feelings of depression or inadequacy. It has been established that noncompliance appears to be relatively common during the first several years after transplantation. That means some patients just don’t take the right amount of medication at the right time, if they take it at all. Furthermore, compliance in most areas of the medical regimen worsens over the first year after the transplant just as it does for most patients who begin new medical therapies. For example:
- Up to 20% of heart transplant recipients and 50% of kidney transplant recipients have been found to be noncompliant with prescribed immunosuppressant medications during a given 12-month period in the early post-transplant years
- 5% to 26% of heart transplant recipients smoke at least once after being transplanted; no study has determined what proportion of these patients become regular smokers.
- 11% to 48% of liver transplant recipients return to some level of alcohol consumption during the first year post-transplantation.
|As a result of noncompliance patients are likely to experience rejection symptoms or actual rejection and, of course when this happens patients experience anxiety and/or depression. http://tinyurl.com/qjlc48n
Researchers at Henry Ford Hospital have found that emotional closeness between transplant patients and their caregivers helps reduce depression and anxiety after surgery. While this study was about liver transplant patients, it is likely that the conclusions probably have universal application.
“People with close networks and good support recover faster after liver transplant and have less depression and anxiety at six months after transplant,” says Anne Eshelman, Ph.D., Henry Ford Health System Behavioral Health Services, lead author of the study.
“These findings suggest caregiving relationships as a target for psycho-therapeutic intervention among patients with end-stage liver disease.”
Study results were presented at the International Congress of Behavioral Medicine in Washington D.C., held by the International Society of Behavioral Medicine and the Society of Behavioral Medicine.
The study looked at 74 liver transplant surgery candidates and their primary caregivers. Transplant patients were surveyed before surgery and at a six-month follow-up. Caregivers rated the degree of closeness they felt in their relationship to the patient.
The sample was divided into groups with caregivers reporting maximum closeness or less closeness.
For patients with end-stage liver disease, depression and anxiety improve after liver transplant, but the study found that these changes are not as great for individuals with emotionally distant caregiving relationships.
“If you live with someone who loves you, the quality of care they provide may be much better, they may be more encouraging, you may want to please them and recuperate faster so you can spend quality time with them,” says Dr. Eshelman. “Caregivers who are not close, may provide the basic requirements, but don’t help give someone a reason to live and look to the future.”
The study results also suggested that emotional closeness was critical for affective improvement in men, but less so for women, though interpretation is limited by a small sample size, explained Dr. Eshelman.
“Men who had adequate number of support people, but did not have close support, were still depressed and anxious at follow up, compared to those who had closer support,” says Dr. Eshelman. “Other literature shows that women have wider support, more friends and family they are connected to than men, and if the primary support person is not that close, they probably rely on the other people such as girlfriends.”
The study was funded by Henry Ford Transplant Institute. http://tinyurl.com/q4bwqzs
Treatments for Depression
From Web MD
If you are diagnosed with depression, here’s some good news: Excellent treatment options are available to you.
Many people use a combination of treatments, such as medication and psychotherapy. For depression that doesn’t respond to standard treatment, non-drug approaches can be effective, either alone or used with other treatments.
Learn more here about the most common approaches to treating depression.
Talk Therapy for Depression
Talking with a trained therapist is one of the best treatments. Some people choose to be in therapy for several months to work on a few key issues. Other people find it helpful to continue in therapy for years, gradually working through larger problems. The choice is up to you and your therapist. Here are some common types of therapy:
- Cognitive behavioral therapyhelps you see how behaviors and the way you think about things plays a role in your depression. Your therapist will help you change some of these unhealthy patterns.
- Interpersonal therapyfocuses on your relationships with other people and how they affect you. Your therapist will also help you pinpoint and change unhealthy habits.
- Problem-solving therapyfocuses on the specific problems you face and helps you find solutions.
Medicines for Depression
Medicines are the other key treatment for depression. If one antidepressant doesn’t work well, you might try a similar one or a different kind. Your doctor might also try changing the dose. In some cases, he or she might recommend taking more than one medication for your depression. There are now many different antidepressants that your doctor can choose from. The entire listing can be seen here: http://tinyurl.com/p4yaq4b
Just keep in mind that recovery is a process that may need constant adjustment and takes time.
Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at firstname.lastname@example.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love. You can register to be a donor at http://www.donatelife.net. It only takes a few minutes. Then, when registered, tell your family about your decision so there is no confusion when the time comes.
Reprinted and reformatted from WikiHow
With Additions by Bob Aronson
Have you just started a new medicinal regimen that requires you to take pills every day? Remembering to take your medication every day can be a chore, but it is also very important for your health. If you’re forgetful or simply have too many medications to track, then maybe this guide can help you remember to get the job done.
Start using a calendar. You can purchase a paper calendar and hang it in your room and teach yourself to look at it every day, making and leaving notes accordingly. You can also search through free electronic calendars on the Internet or use calendar software that may have come with your computer. Some of these allow you to add notes and automatically send you reminders by email or by SMS (i.e. text messaging).
Set visual reminders.
- Put the medication close to something you need to deal with on a daily basis anyway. For example, if you take your medication in the morning, make sure that before going to bed at night, you place it next to the coffee pot, if you make coffee in the morning. Or, you can attach your medication bottle or pill box to your toothbrush with Velcro.
- Make it part of your routine. If you take it every morning, make it a habit to take it as soon as you step out of the shower, or as soon as you get out of bed.
- You can purchase sticky notes to leave in your kitchen, your car, or anywhere that you frequently visit. For medication that is stored in the fridge, you should paste a post-it note on the fridge door (or on your coffee pot) that says Take Pills.
- Remember medication that needs to be taken with a meal, by keeping it right on the table, in front of the place that you eat.
- If you are on your computer often, you might create a text file on your desktop that contains a list of things that you need to do. You can search the Internet for “electronic” sticky notes that you can place directly on your desktop, rather than purchasing paper ones. These programs will often allow you to set timers and reminders directly to the notes to flash or emit sounds accordingly.
- If you have a complex regimen, write a list with the medication, time and date and tape the list to the mirror in your bathroom. You can also print this on a grid and check off each medication after you take it.
- Set an auditory reminder. This is a common and fairly effective way to remind yourself to take your medicine. Most cell phones have an alarm function that allows you to set a “daily” alarm time where it rings. Choose a tone that will remind you that you need to take your medicine. If you do not own a cell phone, you might set your alarm clock to go off at a particular time each day for the same effect. Another alternative is to buy a digital watch and set the alarm to go off as many times per day as you need to take medication. A small digital kitchen timer with a numeric keyboard can be useful. Be sure to get one that can be set for hours, not just minutes and seconds. As soon as the alarm goes off, immediately take your medication to reinforce the habit. Saying “Oh, I’ll do it in a few minutes” can lead to repeated forgetfulness and defeat the purpose of having an alarm.
- Sort your medication. Place all your medications, including your daily dose of vitamins on your kitchen counter. As you take one pill, close the bottle, and place it to the left of the counter, making two piles. Do the same for each pill you take. Remember that the ones you need to take are in front of you. The ones you have already taken are to the left of you. After you are finished taking all your pills for the day, place all those on the left hand side back into the kitchen cabinet. Now you will know that all of your pills have been taken. Pre-sorting the pills into a plastic container designed for this purpose (a pill box or medicine box) is another way to avoid taking the same medication twice by accident. If that compartment is empty, you know you took the meds. Pill sorters come in different sizes and different colors. Aim to have enough to sort two weeks of meds at a time.
- Adopt a “divide and conquer” strategy. In other words, take half of your medicine and keep it in a place other than your household, such as your office at work. If you happen to forget to take your medicine in the morning, you can easily access your medicine at work.
- Be mindful of your medicine’s storing conditions, especially if you plan to keep your pills in your car’s glove box on a hot summer day.
- Get another person to remind you. Have a friend or loved one to remind you to take your medicine, or to ask you if you remembered to take your medicine.
- Use your phone calendar to set recurring reminders daily. It’s a more subtle way to be reminded. If you use your company phone/Outlook, make sure you mark the appointment as “private” and keep the reminder description generic to protect your privacy
Be careful when deciding on reminders. If you get too comfortable with them (such as a note on your fridge or by your pill box) you may be more likely to overlook it or ignore it.
- Not all medication is available or legal in all countries so you should check ahead. Any medication that may have a controlled substance may not be allowed in some countries so make sure you bring your prescription bottle and if possible a photocopy of your physician’s prescription.
- If you choose to set an alarm on your cell phone, be sure that it is a tone that you can easily associate with taking your medicine, so that you do not become too accustomed to hearing a soft tone. Or, if all else fails, set it to the same tone as your normal ring tone.
- Remember to take your medication with you when you go on holiday. When you pack your toothbrush, pack the medications you take also. IMPORTANT! NEVER CHECK MEDICATION WITH YOUR BAGGAGE. ALWAYS KEEP YOUR MEDS WITH YOU IN CASE YOUR BAGGAGE GETS LOST.
- If on vacation, pack your original, pharmacy-labeled medication bottles or keep a detailed list in your purse or wallet. I have attached a sample list to the end of this blog.
- Your meds list should also include critical medical information like insurance, physicians and clinics, and medical conditions. If it happens that you need emergency medical care, this will help the care providers to quickly determine what medications you take and how and why you take them, should you not be able to remember them or not speak for yourself. It is difficult, time-consuming and sometimes impossible for health care providers to identify unlabeled pills. For the same reason, do not dump different medications into the same bottle.
- Before you go on a long vacation, ask your doctor to give you an extra prescription for your pills, so that if you run out, lose them, or spill them, you can have the prescription filled at any drugstore.
- If you are taking medication for a serious condition such as heart disease, wear a Medical Alert tag, necklace or bracelet listing the name(s) of your illness and the medications you use to treat it/each. Also list any potentially hazardous interactions and allergies.
- If one or more of your medications causes photo sensitivity, be sure to put on sunscreen before leaving your house, no matter what it looks like outside; you’d be surprised how little light is required to get a full-blown sunburn!
- Be mindful of making a mental note to yourself when you take your medicine. Forgetting to take your medication is one thing, doubling your dosage because you forgot that you’d already taken your medication for today is another. You could make a box next to your “Remember Pills”-note, tick it off when you’ve taken it.
- If you do forget to take a dose, read the instructions that come with your medication carefully. Don’t assume that you should take your dose anyway- although this is the case for most, it can be different for others. If you have trouble reading, ask the pharmacist to explain the dosage directions.
- Before leaving the pharmacy, check to make sure that the pills in the bag are the pills that you use. Pharmacists make mistakes also.
- When leaving your medicine bottles around to remind you to take them, be careful if you have children so you do not leave the pills in a easy spot for a child to grab.
- Be aware that certain prescription medications have a high potential for addiction or abuse. If you find yourself taking more of a medication than prescribed, call your doctor immediately to talk about the change.
- Some medications, such as those classed as controlled substances, may not be appropriate to leave around the house. Place them in a locked cabinet, box or drawer, and do not move them from one building to the next. Try to not let others know that you are on such medications and avoid taking them in public. It’s not uncommon for people to steal certain medications, either to abuse themselves or to sell to others with similar intent.
- It’s a Federal offence to transfer a controlled substance to anyone other than the person to whom it was prescribed (you). If you do wind up victim of a theft, report it immediately to avoid potential prosecution.
- Some medications have ‘black box warnings’. This means that when taken incorrectly, or by those with certain conditions, fatalities may arise. Place these and other such medications in a safe location and call your doctor right away if you think you might have accidentally taken more than prescribed.
- Sometimes the pharmacist gives out a stranger’s prescriptions by accident, read the label carefully.
Sample Medical Info Sheet to Carry With You
HEART TRANSPLANT RECIPIENT
Best Hospital USA
Birth date 2-17-1950
9180 orchard lane anycity, USA
Home 555-555-5555 Cell phone 555-555-5555
SS # 555-55-5555 Spouse; Jane Doe; Cell phone 555-555-5555
Primary, Dr.Sawbones Anycity USA
Transplant Pulmonologist, Dr. Breatheasy best clinic USA
Transplant Cardiologists, Dr. Heartthump best clinic USA
Transplant Coordinator: Nurse Jane best clinic USA
Primary: Best Pharmacy USS
Secondary: Second best pharmacy USA
Primary — Medicare part A, Hospital, part B, Medical.
Secondary, AARP Medicare Supplement .
Medicare part D Prescriptions, AARP Medicare RxEnhanced
Allergies:Penicillin, cats, all seafood/fish, mold, dust.
Blood Type: B Positive
Heart related medications
- Anti-rejection Cyclosporine 200 mg twice a day
- Anti-rejection — Cellcept 1000 mg twice a day
- Anti-cholesterol — Prevastatin 20 mg once a day
- Blood Thinner – Aspirin 81 mg once a day
- Blood Pressure – Amlodipine Besylate 5 mg twice a day
- Reflux – Omeprozole (Prilosec) two 40 mg twice a day
- Thyroid — Levothyroxine .088 MG once a day (upon arising)
- Asthma – ProAir albuterol rescue inhaler as needed
- COPD – Foradilinhale one capsule twice a day
- COPD – Spiriva inhale one capsule once a day (upon arising)
- Depression-Remeron 7.5 –mg once a day-
Calcium – 600 mg tablet with Vitamin D twice a day
Multi-vitamin– one tablet once a day
- Asthma, hay fever, allergies diagnosed 1941
- COPD diagnosed October 2000
- Restless leg syndrome diagnosed 1996
- Chronic lower back pain
- Heart transplantBest Hospital
- Anywhere USA August 2007
- Cholecystectomy 1994
- Total left knee replacement 1998
Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.
- You may comment in the space provided or email your thoughts to me at email@example.com. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to firstname.lastname@example.org and usually you will get a copy the same day.Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.