Category Archives: Organ and tissue transplants
Overall my transplant has been a very positive experience, but that does not suggest that there weren’t some difficulties and challenges along the way. There were several and they were discouraging, but we kept forging ahead because the alternative was much worse. Now some 20 years post diagnosis. I am alive, I am enjoying life and I am the most grateful recipient on earth. Despite all the setbacks, the bad moments, the complications, I would not hesitate to make the same decision all over again. Thank you Mayo, donor family, my wife and family and the many friends I had and have collected since I got a new heart.
This is an accurate although abbreviated record of my journey. Yours may be totally different and likely will be. I have posted it because of a good many requests to do so. I hope it is helpful to someone. I also hope you will notice that I found some of the experience to be downright funny and I included them because seeing the humor in life’s challenges is important to your recovery. Don’t ever lose your sense of humor; in fact you should aggressively look for it in every situation. It will make your life so much easier to live.
Bob Aronson, heart recipient August 21, 2007 Mayo Clinic, Jacksonville, Florida.
The Beginning. An Earthquake Swallows You Whole
Getting an organ transplant is an experience that few ever have. From the time you first learn that you need one, until a good while after you have one, the ride is not unlike the wildest, highest, steepest, fastest, scariest roller coaster ride you can imagine. It is like standing in the street when an earthquake hits and the fissure in the pavement runs right between your feet. You get the same feeling you did in that recurring nightmare where no matter how fast you run, your legs feel like rubber and you keep falling, but each time you do it is harder to get up and that something that is chasing you is getting closer. You know you are going to die.
Emotions can range from terror, to giddiness, to depression, anxiety, guilt, anger and every other imaginable high, low or even fantasy. An organ transplant will introduce you to feelings you did not know you had and to realities you did not know existed. Most importantly it will allow you to see your own humanity; your strengths, weaknesses vulnerabilities, fears and inadequacies. In other words, you will get to know a side of yourself that you didn’t know existed.
All of us know that someday we will cease to exist, but no one likes talking about it. Insurance companies like to say, “If something happens to you,” and we all know they don’t mean winning the lottery or getting your very own magic Genii who will pop out of a jar and grant you anything you want. “If something happens to you” means not if, but when you die. It means dead, lifeless, no heartbeat, no breathing, no pulse – DEAD!
When you are told that an organ is failing, you are being told that the last option available to keep you alive is a transplant. You are dying. That is information with which it is hard to come to grips, and those of us who have had transplants have all heard that message loud and clear, it is inevitable. It is a sad fact, but everyone on the transplant list is dying.
I’m sure the death message is never delivered in the same manner twice because the circumstances that lead up to it are all different. The very first recognition that something is wrong is usually met with disbelief. “It’s probably nothing, maybe a false positive, it can’t be organ failure.”
In my case it was in mid-1995 when I left the office late one night after a long day. I’m an asthmatic and I had struggled for air all day. I could hardly wait it for it to end but I had a client until 9 PM. When she left, I waited until the elevator doors closed, turned out the lights, locked the door and took an elevator down six floors to the parking ramp. I had arrived at the office late in the day because of meeting and had to park at the very back of the ramp, a good block from the elevator. Most of the cars were gone now and there wasn’t a living, breathing soul to be seen. I could see my car in the distance, but it may as well have been in the next county. My breathing was so labored I doubted I could make it that far, but I had to try.
I am one of those guys who makes a decision and never looks back, so I forged ahead. I was going to make it to my car no matter what. I thought that if I walked slowly I wouldn’t use as much air so that’s what I did, but breathing was getting more and more difficult and my rescue inhaler seemed to have no effect. I chalked it up to a defective device and pushed on while carrying a full briefcase. I leaned on cars, support columns and sign posts, but stopped often and fell twice when my legs gave way under me.
By the time I got to my car my suit pants were torn from falling, my hands were scraped and bloodied from using them to break my falls and I was soaking wet from perspiration. With great effort I made it into the car, turned on the AC and just sat there hoping the rest would restore my ability to breathe. It didn’t. I called home to alert my wife that I was in distress and would pick her up on the way to a nearby community hospital ER. She said I should go to a bigger hospital, but I knew the bigger facility would be crowded and the wait would be a long one so we went to the small one. She was right and i was wrong. here’s what happened.
It was a small hospital in Hastings,Minnesota and there were no patients waiting in the ER lobby when I stumbled to the desk and gasped, “I’m having an asthma attack and need a shot of epinephrine,” and collapsed on a chair next to the nurse.
She took my vitals, listened to my chest, looked at my eyes and fingernails, poked around my ankles and said, “This is no asthma attack.” Somehow she alerted a crash team which appeared in microseconds. They brought with them a gurney upon which they carefully placed me and removed my tie, shirt and t-shirt while wheeling me into an ER exam cubicle. Then, someone else came along and stuck some leads on my chest, sides, legs and arms and wired me to a machine. Another person started an IV. A portable X-ray machine materialized, someone gave me a nitroglycerine pill to place under my tongue but still no shot of epinephrine and I was getting angry. I knew what to do. “Why didn’t they know? I wondered”
A doctor appeared, examined me and ignored my repeated requests for epinephrine. Finally he said, “Mr. Aronson this is not an asthma attack, even though you think it is. It’s your heart.” He left the room to have a conversation in the hall with a couple of other people and then returned to say, “Mr. Aronson, we have determined that your condition could best be handled by a hospital that has cardiologists on duty and specializes in situations just like this. We are sending you there by ambulance so you will get the best and most immediate care possible,” and they wheeled me out to my ride.
Too much was happening too fast. I was totally confused. “This is asthma, for heaven’s sake,” I thought. I just couldn’t wrap my mind around this heart stuff. I was 56 years old and thought I was in very good health. I didn’t drink or smoke and was in fairly good physical condition. I just couldn’t figure out why they thought it was my heart when I knew it was asthma. The ride to United Hospital in St. Paul, Minnesota took about 20 minutes, and I was rushed into their heart unit. More wires, more machines, more activity, blood drawn, questions asked and injections given.
Another technician appeared with an echocardiogram machine. He placed more leads on my body, some cold gel and began moving a wand around the left side of my chest. In the meantime my breathing was improving.
I could see my heart on the echo monitor and hear the “gulp, swish, swish, gulp” of the machine. All the while the medical team was explaining every detail of what they were doing and I heard none of it. “It’s an asthma attack,” I kept thinking. And then I lost consciousness.
I awakened the next morning in a hospital room with my family surrounding me. Everyone was solemn and one of my daughters was crying. A man walked in, he looked like he just stepped off the cover of Gentleman’s Quarterly. “I’m Dr. Thomas Johnson, a cardiologist,” he said. “It appears as though you have a very serious heart condition called Cardiomyopathy. We are going to run some further tests, but you may need a heart transplant.”
I thought, “Boy, this guy doesn’t mince words – a heart transplant? I vaguely remembered being on the air and reporting on the story when Dr. Christian Barnaard performed the first ever in 1967 in a South African hospital. I remember thinking, “Wow, what a development. It will help a whole lot of people someday,” never considering for a moment that I might be one of them. The diagnosis was official now, I had Idiopathic, Dilated Cardiomyopathy. That means I had heart failure from no apparent cause.
It all came together at that moment. The great truth that I had continually denied and avoided was now perfectly clear. The feeling was like that you experience when a monstrous thunder clap or earthquake rattles your bones. It was like lightning bolts flashed out of the clouds, thunder rumbled louder than I could bear and the realization that asthma had nothing to do with my condition that shook my foundation. I was in serious trouble. I felt a mixture of shock, anger, terror, doubt and disbelief. That was my introduction to a process that would take 12 more years before I got a new heart.
The Disease Progresses
A measure of the health of your heart is its ejection fraction (EF). It is how much blood is pumped out of the heart with each beat. On average we pump out about 60-70 percent. My EF was 25. When it gets too low that means that the heart has to grow larger to hold the retained blood, but it’s a gradual process. For a long while I felt OK. I went about my work and with the help of medication performed as I always had. I was a communication consultant helping business executives with presentations, testimony, personal communication and media interviews, and was always upbeat and energetic. Often I was hired as a keynote speaker at conventions. I never stood behind a lectern, but rather walked around the stage, invading people’s space and getting them involved. Slowly that became harder to do.
In 1996, a year later, I started to feel a little fatigue and while still energetic I had lost a step or two, but it was barely noticeable. That same year Avis, my wife of 33 years was diagnosed with lung cancer. She fought hard and for a while it looked like she had it beat but in 1998 she succumbed to that horrible disease and I went through the motions of living. My fear of the slow disability that would be overtaking me was exacerbated by the grief I felt over losing Avis. Being alone after 35 years of marriage is almost unbearable. She was special and losing her left a very large void in my heart and my life.
I stumbled on in a continually weakening condition until 2000 when I met and married my current wife Robin. I told her about my condition and the fact that there were not enough donor organs for the number of patients who needed them, but she was undaunted and married me anyway. As it turned out she always had more faith than I did that I would get a heart and be just fine, but I was now about five years post diagnosis and my EF had dipped to 20 and I lost another step or two. As I walked the stage in my presentations I started to become more breathless so I contracted my movement circle. It was about this same time when I fainted while driving into a parking place. That development caused my physicians to implant a defibrillator in my chest to guard me against sudden cardiac arrest.
At 9 years my EF was between 15 and 20 and it had become very difficult to be as active as I had been so I made sure that I had a bar stool when I spoke that would be placed about center stage between the lectern and the edge. I could still leave the lectern and give the image of energy but I could kind of lean on that stool. Obviously the heart failure was getting worse, but not bad enough to put me on a transplant list.
Finally at 11 years with an EF of 10 to 15 I quit doing keynote speeches and only accepted small group coaching sessions where I stood on occasion but mostly sat on a stool at the front of the room, and then one day, I couldn’t muster the energy to get through a session unless I sat in a chair.
It was time. We decided to retire and move from Minneapolis, Minnesota to Jacksonville, Florida for two reasons. One being that it was my wife’s hometown and her family was there and the second was that one of three Mayo Clinics was located there. I learned they had a phenomenal record of success in getting organs and in the survival rates of transplant recipients.
I made the necessary appointments at Mayo and went through a battery of tests for several days. Finally I was told that my case would be presented to the hospital transplant committee for approval to be placed in the national transplant list. Sure enough I was approved and listed and promptly forgot about it. Everything I had read suggested that people on the list waited a long time and that many never got an organ. I was of the belief that at age 68 I was probably too old and not sick enough. After all I was up and around and not even hospitalized.
By now my EF was down to 10 and my heart was getting seriously enlarged. I was on my second implanted defibrillator and had trouble walking from the den to the bathroom without stopping to rest. Then one morning the phone rang, I answered and confirmed my identity and my transplant cardiologist from Mayo said, “I may have a heart for you.”
I could not believe my ears. I had only been listed 13 days earlier.
“Pack a bag and come to the hospital,” Dr. Hosenpud said, “and we’ll get things underway.” In my mind “pack a bag” meant, “Get your butt over here right away, break the speed limit, we’re all waiting for you, hurry, hurry, hurry.”
I told Robin about the call and we rushed out of the house to make the 45 minute cross town drive to Mayo. It only took 30 minutes. For me the world at this point was moving at near the speed of light. My always composed and realistic wife Robin had no delusions. She expected Mayo to be as reserved and professional as they always were. My mind was simply not that organized. I perceived us screeching to a stop at the hospital where a team of the world’s greatest physicians, nurses and technicians would be in the lobby waiting for us. My mind’s eye saw us running into the hospital surrounded by people in surgical garb and lab coats who were all barking orders while the hospital PA system was calling for more doctors, nurses and technicians. I fully expected the PA system to be saying, “He’s here; the guy who is getting a new heart is here.” I envisioned being thrown on a gurney, stripped of my clothing and rolled at high speed to an operating room where the finest doctors on the planet were assembled next to an ice-covered beating heart in a stainless steel pan.
The Doctors looked like Ben Casey Dr. Zorba and Patricia Neal (all stars of the past).The scenario in my mind called for absolute pandemonium. I was that excited so they must be, too. I needed pandemonium — to have it meant this event was the show of shows, the biggest medical story of the century.
I got anything but. I walked in, stood in a very orderly line and when I was waved forward said to the receptionist, “I’m Bob Aronson and I’ve just been called by Dr. Hosenpud to come in for a heart transplant. “Ok,” I thought. “Cue the marching band and a frenzied atmosphere.” But nothing of the sort happened.
She looked up at me and smiled, looked down at her computer screen and said, “Someone will be out to get you shortly, Mr. Aronson, please have a seat.” There were scores of people in the waiting room and not a single one looked up when I entered. They all sat in perfect silence waiting their turn and ignoring my big event. For all I knew every one of them was here for a transplant as well.
“Have a seat?” I thought. “Don’t they know why I’ m here, who I am? For God’s sake there’s a heart on ice in there beating away, waiting for me and she wants me to sit?” I had considered this day often and each time I did there was pandemonium. I wanted pandemonium, I deserved pandemonium, I needed pandemonium, I craved it, but alas it never happened.
A very nice woman came out in about fifteen minutes and quietly said, “Come with me, Mr. Aronson,” and we slowly, quietly walked behind the reception desk into the surgical area, where I got on a gurney under my own power, put on a gown and was surrounded by very pleasant, highly professional staff who proceeded to quietly and efficiently “prep” me for the surgery.
Finally they wheeled me to a surgical suite where the strains of Beethoven could be heard on the speaker system as the anesthesiologist told me what his role was and about the anesthesia I would be getting. Then, he said he would give me something to “relax” me. It sure did.
I awakened in recovery the next day to the sound of Robin saying, “You have a new heart and you’re doing well.”
Recovery. The Days After
When I awakened again, I didn’t know where I was. I felt like I was duct taped to the bed. My head hurt. I was nauseous and confused. I vaguely remember several doctors entering the room. They asked about pain levels and said they were going to remove my dressings. One of them leaned over me crossed his arms so his right hand was on my right shoulder and his left on my left shoulder, Then there was the sound made by industrial strength Velcro makes when being torn apart rapidly–“Riiiiiiip” and he said, “You Ok?” I don’t remember my response because I lost consciousness again.
My next awakening was in Cardiac Intensive care. I think I was alone in my own cubicle. There was a nurse there and I was so thirsty my mouth felt like hot sandpaper. I asked for water. The nurse said, “You can have ice chips once an hour and she handed me a glass of them.
“No,” she said, “Not for another hour.”
I begged and pleaded to no avail. So I focused on the wall clock. “57 minutes to go.” It was the longest 57 minutes of my life, but right on schedule she was there with the small glass of ice chips. I was still parched and the chips gave only momentary relief, so I begged again, but failed to penetrate her compassion shield. I think I called her “an ice Nazi.” She didn’t laugh, but it didn’t sway her either. I don’t know how long that went on, but she never relented and I will always remember being the thirstiest I have ever been.
I do not recall how long I was in ICU, but I do remember being moved to my own private room. When I entered the hospital I was suffering from horrible heartburn and I was still bothered by it after surgery so I asked them to place me in the recliner chair in the room. They did and I settled in for the duration. They never cured the heartburn so I never got in bed. I’m probably one of the few transplant patients who spent all my time in the hospital room, some 9 days, without ever getting into bed. The housekeeping staff seemed to like that. One less bed to change.
My Mayo Transplant was done in St. Luke’s Hospital in Jacksonville, Florida while the Mayo hospital was being constructed. St. Luke’s was nice, with an incredible, wonderful staff, but it was old. In my room there were two chairs, one was the recliner in which I sat. I think it was built in 1915 in Tsarist Russia for use on the enemies of the “Mad Monk” Grigori Rasputin. You had to be a contortionist to adjust the recline angle of the chair and no one who has had their chest cavity carved open has that ability.
That chair was bad enough, but the other one was clearly meant as an alternative to water boarding. It was a straight backed heavy oak, ladder-back chair. It was designed to make people confess, not to be comfortable and it was what Robin had to sit on, day after day. I don’t know what happened to it since then, but I would bet it is indestructible, probably won’t even burn.
During my stay there, I was constantly wheeled to different tests including heart biopsies, more echograms, X-ray’s and other imaging, pulmonary exams and treatments and meds adjustments. I was weak, still had heartburn, was not eating very much and generally didn’t feel real good, but finally was sent home with instructions on how to recover there.
Post-transplant depression is quite common for a host of reasons, one in particular is guilt. It is not unusual for a transplant recipient to feel terrible because “someone had to die, in order that I could live.” That statement supposes that the organ recipient bears some responsibility for the death of the donor. When you consider it, the thought is unreal and illogical. While I understand that sentiment I respectfully disagree. Here’s my take on the issue. No one HAD to die and when they did, it was not so you could live. That person’s life had ended. They died sadly, because it was their time to go. Prior to that he or she voluntarily signed up to be an organ donor. Then, for whatever reason they died. When they did UNOS (The United Network for Organ Sharing) began a search to look for a match for the organs of the deceased person. You are a number on their list; they don’t have your name.
No one HAD to die so you could get a transplant, but someone did die and you were chosen to get the organ. It’s not as though your donor was called in to the central office and told, “Hey George, today is your turn, We need your heart, kidneys and pancreas. We’ll be putting you down at 3 PM so say your goodbyes.” It just doesn’t work that way. George, for whatever reason, lost his life that day and because he was a generous, compassionate person he had arranged for someone to get his organs upon his passing. Someone, anyone. It is a gift to whoever needs it most. Your donor made that decision, no one else. Be grateful, yes, but guilt has no place in the equation. you are not responsible for your donor’s death.
I seemed to be doing better at home until I awakened one morning with a terrible heaviness in my chest. Breathing was difficult and I was coughing. A call to my transplant coordinator resulted in being instructed to go to the Emergency Room right away. It wasn’t long after I arrived and was examined that I was informed that I had pneumonia and the pulmonologist said he was very worried about my lungs. After nine more days in the hospital and some heavy duty therapy I began to recover and was released. When I got home I retreated to the den in my favorite recliner, turned on the TV and sunk into terrible depression, a condition that didn’t end soon or easily.
Like all transplant patients I was not allowed to drive for a while so at least twice a week Robin had to drive me to Mayo for checkups and treatments. I went because I had to. There was no joy in any of it including the cardiac rehab program, which was well-run, but well beyond my ability to enjoy. This was my lowest point ever. I have since learned that post-transplant depression is very common and yes, I was treated for it, but it is the kind of illness that doesn’t respond immediately to treatment, so I stayed in that state for several months while we experimented with anti-depressants.
At the same time, I was stricken with incredible shoulder, neck, arm and wrist pain. I knew I had the beginnings of osteoarthritis, but I didn’t know it could be this painful. Additionally, I was told that when they perform a heart transplant your arms are placed over your head at a strange angle so the surgeon has complete access to the chest cavity. It is not unusual, I’m told, for some patients to suffer shoulder pain as a result. I was one of those patients. For weeks I suffered from pain so horrible I could not sleep or eat and while the Mayo docs made every effort to help, it took time to find the appropriate method of addressing it. They finally did, but that episode had me descend into even greater depths of depression.
Slowly, very slowly I regained my appetite, my mood brightened and the pain lifted, but it was almost a two year ordeal in which I went from 225 pounds to 150, a 75 pound loss due to having no interest in food and a stomach that wouldn’t keep much down. I think I lived on puddings, gelatins and soft fruits. The only thing that kept me going was a newfound interest called Social Media.
Robin was my salvation in all of this. She not only took care of me at home, but made sure I made all my medical appointments, had the right meds and ran two businesses out of our home at the same time. She is steady as a rock, never panics and is always up-beat and encouraging. Being a caregiver is very hard work. She did it and to some degree still does it without complaint. I am a most fortunate man. I love her with a special intensity and am blessed that she feels the same about me. She is a fantastic woman.
In November of 2007, two months after my transplant I got a call from Lee Aase the social media guru for Mayo Clinic in Rochester, Minnesota. I knew Lee professionally and was flattered when he called to ask if I’d be interested in starting a Facebook group and a blog. I said, “Huh,” and “huh.” I had no idea what either were. Lee is a patient man and took the time to give me a crash course and that’s when today’s over 4,200 member Facebook group Organ transplant Initiative was founded along with Bob’s Newheart blogs. Lee came up with the Newheart name which I still think is mighty clever.
The miracle of the social media for me is that it gave me some new responsibilities, which I desperately needed. My nature is such that if I take on a task I don’t know how to give it anything but my very best. OTI and the Newheart blogs gave me a new reason to get up in the morning. Each day I had something new to do, blogs to write, topics to introduce on Facebook and something to keep my mind off of my miseries. Lee’s call may have saved my sanity.
The Facebook group grew rapidly and the members were incredibly supportive of one another and of me. Since I started blogging I have posted over 260 columns on topics around transplantation/donation and related issues, which is just about any medical story. While some of them were provided by guest bloggers I researched and wrote about 90 percent of them.
Robin is an artist and we sell her colorful anodized aluminum and polymer clay jewelry at art fairs around the east and Midwest and we travel to those shows with our two dogs in our RV to the tune of about 20,000 miles a year. We love the life, enjoy what we do and have no plans to quit anytime soon.
Her art business required furnishings for her tent and because I have always liked doing woodwork I began to build a shop and make shelving, pedestals, picture frames, tables and wooden jewelry boxes. I’m no expert woodworker, but it is a hobby I really enjoy and intend to keep doing it as long as I can. I am busier today than I was when I was working, but now I answer to no one but I and work only on things that give me great satisfaction.
I am convinced that the road to good health and happiness is made easier if you can stay busy doing things you love doing.
Readers – the only advice I can give you is this. Never give up, never. Be confident of a bright future because if you think otherwise you may be paving your own road to hell. Find something you really like doing, enjoy your new life, love your friends and loved ones with every ounce of your soul and as Spock said, “Live long and prosper.” You’re worth it and you deserve it!
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 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. 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.
If you are a regular Bob’s NewHeart reader you know I have posted hundreds of articles on donation/transplantation issues and you might think that by now I, myself, would be a pretty good source of information. Well, whenever I let myself think that, even for a second, I stumble across something new that reminds me that I am only a reporter, not a medical expert.
Your Questions Answered
Some of the most common questions I hear from readers include, ”What can I expect after my transplant? What will life be like? Will I be able to resume a normal life right away? Will there be complications? Well, it’s hard to find the answers to all those questions in one place but today’s post comes about as close as any I’ve seen.
This is a great resource for both pre and post organ/tissue transplant patients. Please read it and pass it on. It is a reprint from the American Society of Transplantation (AST) publication “Healthy Transplant.” Let them know you appreciate their efforts on your behalf.
Some of the graphs and charts may be too small for you to read but if you click on the link you can enlarge and study them.
http://www.healthytransplant.com/health_maintenance/health_after_transplantation.aspxHealth After Transplantation
KEEPING A HEALTHY OUTLOOK ON LIFE
After an organ transplant, there is hope for the future. However, there are a number of health concerns that you will face. For example, there is the chance that your new organ will not always function as well as it should. Transplant recipients also have a higher risk of developing certain conditions such as high blood pressure, high blood lipid levels, diabetes, kidney problems, liver problems, and bone disease. Infection and cancer are also conditions you need to keep in mind.
Some conditions can affect any transplant recipient and some conditions are specific to the type of organ transplanted.
CARING FOR YOUR NEW ORGAN
Lab Tests for Measuring Organ Function
It is important to keep all of your scheduled checkups and lab appointments for monitoring organ function. Testing allows your transplant team to monitor the status of your transplant, detect rejection early, and start effective therapy right away.
Common tests for checking organ function are listed below:
OTHER HEALTH ISSUES
Anti-rejection medications increase your risk of developing certain conditions such as infection and cancer. Other side effects of some anti-rejection medications include high blood pressure, diabetes, high blood lipids, kidney disease, heart attack, stroke, and bone disease. Knowing the risks and taking steps now to prevent them is a good way to keep you and your new organ healthy.
HIGH BLOOD PRESSURE
High blood pressure (hypertension) is a common complication in patients who receive a transplant. High blood pressure can damage the arteries and the heart, increasing the risk of a stroke, a heart attack, kidney problems, or heart failure.
For many patients, the cause of hypertension is not known. However, people with kidney disease, diabetes, or high blood pressure before the transplant are at higher risk of high blood pressure after the transplant. Other factors that contribute to high blood pressure after a transplant include a diet high in salt, clogged arteries, high blood lipid levels, smoking, obesity, and some anti-rejection medications such as cyclosporine, tacrolimus, and steroids (prednisone).
Recommended Blood Pressure Levels
People with a blood pressure of 140/90 mm Hg or higher are considered hypertensive. While most transplant recipients should have a blood pressure of 130/80 mm Hg, the ideal blood pressure can vary from person to person. The American Heart Association (AHA) guidelines for the target blood pressure in the general population can also be used as guidelines for organ transplant recipients. Normal blood pressure values for children are based on age, sex and height and in general are much lower than in adults.
Systolic Pressure (mm Hg)
Diastolic Pressure (mm Hg)
Less than 120
Less than 80
Stage 1 hypertension
Stage 2 hypertension
160 or higher
100 or higher
High blood pressure usually does not cause any symptoms so it is important to have your blood pressure checked by your transplant team at regular follow-up exams. Your transplant team may also want you to monitor your blood pressure closely while at home.
Reducing High Blood Pressure
Making some lifestyle changes can lower your blood pressure and prevent hypertension
Figure. Lifestyle changes for healthier living.
Sometimes hypertension can be controlled with lifestyle changes such as diet and exercise, but most patients also require medication.
There are a variety of medications for treating and controlling high blood pressure
Figure. Blood pressure medications
The most commonly prescribed medications include ACE inhibitors, ARBs, calcium channel blockers, beta-blockers, and diuretics. Some of these medications may have interactions with certain anti-rejection medications.
HIGH BLOOD LIPIDS
While lipids (cholesterol and related compounds) in your blood are necessary for good health, too high levels of some lipids can increase your risk of cardiovascular disease, a leading cause of death among transplant recipients. Most transplant recipients develop high blood lipids. Kidney, heart, and liver transplant patients usually display similar elevations in total cholesterol (TC) and low-density lipoprotein (LDL) cholesterol (“bad cholesterol”).
Eating the wrong foods, lack of exercise, and being overweight can increase your risk of developing high levels of LDL cholesterol (“bad cholesterol”), high levels of triglycerides, and low levels of HDL cholesterol (“good cholesterol”). Transplant recipients who are obese, smoke cigarettes, or have high blood pressure are more likely to have high cholesterol. Steroids and some of the other anti-rejection medications, such as cyclosporine, sirolimus, and tacrolimus, can also cause high blood lipid levels.
Recommended Blood Lipid Levels
Be sure to ask your doctor what your cholesterol levels should be. In some instances, transplant recipients can follow target levels of blood lipids recommended in the National Cholesterol Education Program (NCEP) guidelines.
< 100 mg/dL
< 40 mg/dL
Reducing High Blood Lipid Levels
Making healthy lifestyle changes can lower your chances of developing heart disease. You can help lower your blood lipid levels with a proper diet and regular exercise. A diet low in cholesterol and saturated fats may also help reduce your risk of coronary artery disease. In addition to making healthy changes to your diet, exercising for a minimum of 20 to 30 minutes 3 to 4 times a week can also reduce your lipid levels and lower your risk of heart attack or stroke. If you smoke, it is important that you STOP!
If adjustment of your anti-rejection drugs, diet, and exercise are not successful in reducing lipid levels, your doctor may want you to take cholesterol-lowering medications. There are several medications that work to lower blood lipids. The most commonly prescribed medications are called statins, which include atorvastatin (Lipitor®), simvastatin (Zocor®), pravastatin (Pravachol®), fluvastatin (Lescol®), rosuvastatin (Crestor®), and lovastatin (Mevacor®).
If your doctor prescribes a statin, you will need to be monitored for side effects because the risk of side effects is greater when taken with anti-rejection medications. You will also need blood tests to monitor liver and muscle function. Other types of medication that your transplant team might prescribe to treat high blood lipids include bile acid sequestrants, nicotinic acid, fibric acids, and cholesterol absorption inhibitors.
High blood glucose can cause many health problems, including diabetes, heart disease, kidney injury, nerve damage, and eye problems.
Post-transplant diabetes (PTDM) is more common in transplant recipients who have a family history of diabetes as well as those who are overweight, are taking steroids, or have hepatitis C. Diabetes after a transplant is also more common among African Americans and some other ethnic groups such as Native Americans. Other risk factors for PTDM include older age of the recipient.
Controlling Blood Sugar Levels
Most transplant recipients with diabetes can follow the American Diabetes Association (ADA) guidelines. Patients with PTDM should establish a healthy (weight-reducing, if necessary) diet with a structured exercise program. A healthy diet is needed to prevent diabetes or to help control your glucose if diabetes does occur. For all transplant recipients, it is best to eat a healthy diet and exercise regularly to avoid weight gain and reduce the risk of developing high blood glucose or diabetes.
Your transplant coordinator or dietician can help determine your recommended daily calorie intake. Limiting the amount of fats and sugar in your diet can also help to maintain a healthy level of blood glucose.
Treatment Options for Controlling Diabetes
There are several types of medications available for patients with diabetes. Depending on the level of glucose in your blood, treatment with oral hypoglycemic drugs and/or insulin may be indicated. For many transplant recipients, insulin injections or an insulin pump is an option for controlling blood sugar. Or, you may be given an oral medication to control blood glucose levels. Your transplant team will determine which medication is right for you.
Kidney function is often decreased in transplant recipients. This may be caused by a pre-existing condition such as diabetes, high blood pressure, or injury to the kidney before a transplant. Or it may be caused by medications used to prevent rejection after a transplant.
The best way to help prevent kidney disease is to keep your blood pressure and blood glucose under control and to maintain a healthy weight. In addition, regular checkups with blood and urine tests will give your doctor important information for detecting early changes in kidney function and allowing appropriate steps to be taken.
BLOOD VESSELS DISEASE
Transplant recipients have a higher risk of developing blood vessel disease. Some anti-rejection medications increase the risk of high lipid levels, which can clog arteries and restrict the flow of blood to the heart and brain. Deposits — called atherosclerotic plaque — can completely or partially block blood vessels resulting in a myocardial infarction (heart attack) or acute coronary syndromes.
Likewise, a stroke can occur if an artery that supplies blood to the brain becomes blocked. Partial blockage may temporarily reduce the blood supply to the brain. A complete loss of blood supply to the brain results in a stroke.
Bone disease is a problem for many organ transplant recipients. Organ failure before your transplant may cause bones to become thin and brittle (osteoporosis). Other causes of osteoporosis include use of some anti-rejection drugs (corticosteroids), overactive parathyroid gland, cigarette smoking, and not enough calcium in your diet.
Preventing Bone Disease
There are some basic things you can do to help prevent or treat bone disease.
- Exercise regularly, including weight lifting or strength training — be sure to discuss weight limits with your transplant team before beginning an exercise program
- Eat foods that are high in calcium, including low-fat yogurt, cheese, and milk
- Choose foods and juices with calcium added
- Get plenty of dietary protein (unless restricted by your doctor)
- Take calcium supplements if directed by your doctor
- Take vitamin D only as directed by your doctor
- Stop smoking
Your doctor or transplant dietician will tell you if you need to take calcium or vitamin D supplements. Your doctor may also want you to take medications that prevent bone thinning, including bisphosphonates such as alendronate (Fosamax®), etidronate (Didrocal®), and risedronate (Actonel®) or calcitonin.
Diet – Things are shaping up
The recommended diet for transplant patients consists of 30% fats, 50% carbohydrates and 20% protein.
Figure. Recommended composition of diet for transplant recipients
Your transplant dietician will give you specific instructions about your recommended daily allowance of specific nutrients. Some tips for following a healthy diet include:
- Eat high-fiber foods such as raw fruits and vegetables
- Increase your calcium intake by eating low-fat dairy products and green leafy vegetables or by taking calcium supplements (if directed by your doctor)
- Eat less salt, processed foods, and snacks
- Use herbs and spices to add flavor instead of salt
- Drink plenty of water (unless you are told to limit fluids)
- Eat as little fat and oil as possible
- Eat high-protein foods such as lean meat, chicken (without the skin), fish, eggs, nuts (unsalted), and beans
- Select healthier condiments such as mustard, low-fat mayonnaise, and low-fat salad dressing
- Instead of frying, try baking, broiling, grilling, boiling, or steaming foods
- Instead of using oil to cook, use nonstick, fat-free spray
Exercise is a great way to help increase your energy and strength after a transplant. A regular exercise routine will also help you maintain your ideal weight, prevent high blood pressure and high lipid levels, and keep your bones strong. It also helps relieve stress and overcome feelings of depression.
Soon after your transplant, you’ll want to start slow with a low-impact activity such as walking. With time, you can increase your workout with more demanding activities such as bicycling, jogging, swimming, or whatever exercise you enjoy. Training with dumbbells, cuff weights, or weights will increase strength and help prevent bone loss, but check with your transplant team first to determine how much weight is safe for you to lift. Stretching exercises are also important for muscle tone and flexibility. Be sure to check with your doctor before beginning or changing your exercise routine.
Smoking also contributes to already high risk of cardiovascular, particularly in patients with diabetes and may be detrimental to kidney function. Transplant recipients who smoke should to STOP smoking as soon as possible.
Routine dental care is important both before and following transplantation as oral infections can cause significant medical problems and even death. According to the American Heart Association (AHA), pre-treatment with antibiotics is not needed for routine dental care unless the patient has an underlying heart condition that increases the risk of developing a heart infection. These include patients with heart transplants with graft valvulopathy (or a previous history of endocarditis, prosthetic valves, and certain forms of congenital heart diseases.)
Gingival overgrowth (hypertrophy) is a dental issue that can arise in transplant patients especially those using cyclosporine. This occurrence of gingival overgrowth can be reduced by practicing good oral hygiene.
ROUTINE FOLLOW-UP EXAMS
All people should have regular exams to help prevent illness.
As we get older, there are some specific tests that should be done on a regular basis
Figure. Recommended tests by patient age
In addition to the tests that your transplant team will perform at regular follow-up visits, you will need to do some self-testing at home. Here are some things you will need to monitor:
- Weight – Weigh yourself at the same time each day, preferably in the morning. If you gain 2 pounds in a day or more than 5 pounds total, call your transplant team.
- Temperature – You should take your temperature daily, especially when you feel like you have a fever. Call your transplant team if your temperature is too high.
- Blood pressure – Check your blood pressure as often as your transplant team recommends.
- Pulse – You should check your pulse daily. A normal heart rate when not exercising should be 60 to 100 beats per minute. (If you have had a heart transplant, your resting heart rate may be as high as 110 to 120 beats per minute.)
- Blood sugar – If you have high blood sugar or diabetes, you will need to monitor your blood sugar using a glucometer.
Do not take any pain medication (for example, Tylenol®, Motrin®, or Advil®), cold remedy, antacid, herbal medication, or any over-the-counter medication unless your transplant team tells you to.
PREGNANCY: BENEFITS AND RISKS
For female transplant recipients of child-bearing age, fertility is usually restored immediately after a transplant.
There have been thousands of births among women with transplanted organs.
Figure. Number of pregnancies in the US reported in organ transplant recipients
Although pregnancy is now an expected part of the benefits afforded to women by organ transplantation, there are also a number of considerations.
Getting pregnant is generally not recommended within the first year after a transplant because the doses of anti-rejection medications are highest; there is a greater risk of rejection; and many other medications are prescribed that are toxic to the developing fetus. Female transplant recipients of child-bearing age should continue using birth control until the doctor says that it is okay to get pregnant.
Male transplant recipients may also be concerned about their ability to have children. Men may have fertility problems related to some transplant medications, but many men have been able to father healthy children after a transplant.
If you are interested in, or thinking about, becoming pregnant you must talk to your transplant team first. Pregnancy should be planned when organ function and anti-rejection therapy are stable and there are no signs of rejection, high blood pressure, or infection.
High Risk Pregnancy
According to National Transplantation Pregnancy Registry (NTPR) over 70% of births to female transplant recipients are live births and most have favorable outcomes for child and mother. Although this success is encouraging, these pregnancies are still considered high risk. There are risks of complications during pregnancy for the transplant recipient as well as risk of infection and exposure to anti-rejection drugs for the fetus.
For example, there is a greater risk of high blood pressure during pregnancy in the woman who has received a transplant. The risk of infection is higher for all transplant recipients, and urinary tract infections are the most common infections during pregnancy. Other infections that may cause concern during pregnancy include herpes, hepatitis, toxoplasmosis, and cytomegalovirus. Other risks include preeclampsia and preterm delivery. The fetus is also at risk for infections such as cytomegalovirus and herpes simplex virus related to the suppression of the mother’s immune system by anti-rejection drugs.
A common question is whether the baby born to a woman with a transplanted organ will be normal. We know that some babies are born premature to mothers with transplants and that they have low birth weights. It is not known whether there are long-term effects on the baby’s development.
You should inform your baby’s pediatrician that your baby was exposed to anti-rejection drugs in the womb. There is a higher risk of birth defects with some anti-rejection drugs especially mycophenolate mofetil and azathioprine. The levels of anti-rejection drugs in the mother’s blood must be monitored closely. Monitoring of blood levels is particularly important in the third trimester, when fetal metabolism may increase the clearance of anti-rejection drugs from the blood. Ask your transplant team whether or not you should breast-feed. It is not known whether breast-feeding while on certain anti-rejection medications can harm the baby.
A major concern for transplant recipients is whether pregnancy will lead to organ rejection or decreased function of the transplanted organ. In general, pregnancy does not affect organ function or patient survival as long your organ is working very well. But, it is very important to discuss with your transplant team whether or not a pregnancy will be too risky. Because pregnancy is considered high risk for transplant recipients, your transplant team may recommend and work with an obstetrician who specializes in high-risk pregnancies.
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Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 3,000 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 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.
Please view our new music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs. This video is free to anyone who wants to use it and no permission is needed.
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 email@example.com 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.
Puede comentar en el espacio proporcionado o por correo electrónico sus pensamientos a mí en firstname.lastname@example.org. Y – por favor, difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si usted convence a una persona de ser donante de órganos y tejidos puede salvar o afectar positivamente a más de 60 vidas. Algunas de esas vidas pueden ser personas que conoces y amas.
Por favor, consulte nuestro nuevo video musical “Dawn Anita The Gift of Life” en https://www.youtube.com/watch?v=eYFFJoHJwHs YouTube. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.
Si quieres correr la voz acerca de la donación de órganos personalmente, tenemos otra presentación de PowerPoint para su uso libre y sin permiso. Sólo tienes que ir a http://www.organti.org y haga clic en “Life Pass It On” en el lado izquierdo de la pantalla y luego sólo tienes que seguir las instrucciones. Esto no es un espectáculo independiente, sino que necesita un presentador pero es profesionalmente producida y sonido hechos. Si usted decide usar el programa le enviaré una copia gratuita de mi libro electrónico, “Cómo obtener un pie” O “que le ayudará con habilidades de presentación. Sólo tiene que escribir a email@example.com y por lo general usted recibirá una copia del mismo día.
Además … hay más información sobre este sitio de blogs sobre otros donación / trasplante temas. Además nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos Cuantos más miembros que obtenemos mayor será nuestra influencia con los tomadores de decisiones.