A Transplant Patient's Experiences with Medications

by Jim Gleason, recovering Heart Transplant Patient (transplanted 10/19/94)

This is one in a series of short articles sharing this heart transplant patient's experiences in some area of common concern. Included in the series are similar articles covering Nutrition, Weight Change, Biopsy, Rejection, Medication, Exercise, Motivation & Boredom, Transplant Surgery, and Fear & Facing Death. These are not meant to replace any professional medical advice, but rather are one layman's interpretations of actual experiences he had while waiting for, undergoing, and finally, recovering from, a heart transplant at the University of PA Medical Center. While each person will have their own unique experiences, many have found this simple sharing to be of value in reducing their own concerns seeing that such feelings and experiences are part of the normal recovery process seeing that there is light at the end of what may now appear to be a very dark tunnel through the eyes of another who has passed this way ahead of them and, most importantly, the light at the end of that tunnel is not a train engine coming directly at them, it is the light of another sunny day, another gift of a day of life. May you find joy in that daily gift of life as I have through the miracle of this medical science known as transplantation.

Pills, pills, and more pills!

Accept the fact that they will be a part of your life support system from this point on - and based on the stories we 3 Heart BEATS (remember the Bodies Eagerly Awaiting Transplant Surgery - see article on Motivation & Boredom) heard first hand while recovering in the hospital from our heart transplant surgery, if you stop following your doctor's directions for taking them, you will die! OK, they got my attention. While I had never been a pill person - avoiding them as a basic philosophy for the first 50 years of my life, this heart situation changed that. This article shares personal experiences with this all important process, hopefully helping the reader, either patient or supporting family, in understanding effective means of controlling one's medications and supplementing with personal experiences the transplant team's education on side effects associated with taking them.

How Many is a "Pile of Pills?"

"How many pills will I be taking?" I asked prior to transplant. Having gotten used to taking a pile of pills every day for the past 2 years as part of my cardiomyopathy treatment (i.e., 12 pills) - quite an adjustment from my lifelong aversion to taking any pills at all - I was curious at the vague response of: "a lot!" Pushing further and the description was expanded to "like a bowl of trail mix!!" Actual experience following transplant: 44 pills per day - awesome!! but in practice, not bad at all!! The schedule is reasonably focused to 4 times per day: most in the early morning, a couple at lunch and then again mid-afternoon, the rest mid-evening. I could handle that - especially in the interest of living a full life again - small price to pay, I feel. But that's today. Lets go back to the beginning of my 5-week hospitalization to await the availability of a donor heart.

In the Beginning

Upon admission to the hospital, all the feeling of control, especially as I had carefully managed and understood my existing regimen of pills, was immediately lost. Pill schedules were totally different, medications were changed and their form was different (i.e., infusion replaced pills in some cases, needles supplemented still others). My first reaction to these changes was one of laying back and letting go of my responsibility. By day two, I was fast moving into a depressed state, a real detriment to the healing process. With goals in hand (see companion monograph on Motivation and Boredom), I asked my nurse, Mary, to help me regain control by making a list and schedule that I could use to manage my medication regimen again. She gladly supported this and even added notes on the purpose of each. Sounds simple, but this was a major turning point in my active participation in the transplant preparation and as a key member of the team. Each day I practiced and kept track of each pill delivered and taken. As you will see, this was important training for the day when Jay, my wife, and I would return home and take on total responsibility for the lifetime regimen of pills. My philosophy was that there was only one member of the team on duty 24 hours per day, 7 days per week, with focus on only 1 patient: ME! Everyone else had other added responsibilities, went off shift, took vacation, had to read cryptic notes to understand what the prior shift had done, etc. This became my role and I felt in control again - and thus felt good.

For example, once, hospital staff came in to duplicate medications that had already been given. "Where do you think you're going with those 3 needles?" I asked of the young nurse. "Your doctor changed the meds and this is the new dose..." she replied confidently. They had already given me those shots before the other nurse went out on lunch. Finally refusing to allow the shots to be given until she proved to me, the patient in charge, that the orders were not a duplicate dose, she went off and found that I was right - after all, I was there for the first shots, personally - avoiding a mistake that would have resulted in 200% increase in diuretics. Everyone is human and the hospital staff did a wonderful and professional job - but the patient must take responsibility too.

Another time they came in with a different set of meds which, while correctly prescribed by the doctor (intern, resident, or transplant team primary?), this change had not been discussed with me. Again, refusing to take the pills until I had a clear understanding from the doctor in charge of this change, resulted in an apology from the doctor and an agreement to work together on the same team in the future. He welcomed my involvement, and together we cleared any misunderstanding. Again, I felt like a responsible member of the support team, instead of the "victim" role the patient so often feels in such situations. You should be playing an active, not passive, role in this critical process. After all, what else are you going to do with all this waiting time?

Overwhelmed at Home

Finally we were home with a new heart. What an upbeat (get it? new heart-beat!) time for everyone. Dad was home! The family was back together again. Everyone is scared with their new support role - everyone is walking on eggs as adjustments are made in a very strange immune suppressed environment (wash hands upon entering the home, stay away from kids and crowds, avoid mold like in a basement or garden or fish tank, etc.). The prescriptions were ordered from the local pharmacy and a team sent to pick them up for the first time. "Gleason's Rxs? Yes, right over here." and two large shopping bags are put up on the counter to the amazement of all. (Just one month's supply - wow!) "Wait til dad sees this" Thanks to a good insurance plan, our co-pay was only $70 for about a $1,000 worth of Rx's - not bad. At home we cleared the table from a big, tear filled, family meal of thanksgiving for dad's safe return. The 2 bags are emptied out onto the table - a feeling of being overwhelmed fills the room. How are we ever going to do this. It felt so reasonable when the nurse explained the details in the safety of that hospital room. This was like Christmas time, opening up the presents (i.e., Rx's) and grouping like pills - red ones here, green ones over here - there are those dreaded steroids - Oooohhh...! Most of the bulk was in the boxes of Cyclosporine - two different size capsules. Once arranged on the table, with the whole family helping, we took a plastic week-long pill organizer with each day having 4 compartments corresponding to the times of the day pills are taken, and filled them based on the sheet provided by the transplant team. Hummm... - not too bad - 4 basic pill taking events per day - 44 pills in all. But here's the secret: get the mind to focus on an "I can do this" attitude. One particular pill posed a problem for me - the K-DURs ( a potassium supplement that is so big we referred to it as "the horse pill" - i.e., as in "big enough to choke a horse"). This pill - taken 3 times a day - would always stick in my throat. I would take it first so if I gagged and it came back up there wasn't the problem of what other meds had come back up with it. If I think through it and move past the "this isn't going down" picture, changing it to "I've gotten it down before, it'll go down this time" - gulp, and down it goes - smooth - "piece of cake!" was the phrase used to describe how easy this has become. Note that even when I broke that horse pill in half (making it smaller than other pills that present no such problem...), under the negative mental image, I would still choke on it. Change the mental picture - it becomes "a piece of cake."

Lifetime Ritual and Quality Control

Once past the initial shock and novelty, this medication regimen became routine - subject to constant change based on clinic and biopsy results. Jay and I developed a weekly fill-the-pillbox process. This regimen is quite complex (44 pills, taken 4 different times in the day, involving 15 prescriptions (or over the counter medications) - that's 308 pills to be put into 28 small slots every week - handled by a patient with shaky hands (another side effect of these meds) and some of those pills have to be cut in half to get the right dosage (usually the smallest ones, of course - PS: get yourself one of those small, inexpensive pill cutters available in any drug store, while they don't work perfectly, it does ease the situation a little). We always do this as a team for quality control - and still catch mistakes or drop pills. Try this when the other side effect is one that makes the patient on the edge of flying off the handle whenever anything seems upsetting. Its an act of true love! Read on . . .

PMS and the Transplant Patient

"Who is this monster you sent home to me?" pleaded my harried wife over the phone to our understanding transplant nurse (another of the unsung heroes of the support team). By phone, I had tee'd off on Jay over some normally trivial subject. In 30 years of happily married life, this was a most unusual outburst by a very easygoing, loving husband/father. Heather's response (or was it Kathy's?): "Mrs. Gleason, do you know what PMS is? Well, he's got PMS and it will go away in about 3 months." This is another side effect of the steroid (Prednisone, such an innocent looking, tiny white pill that protects the heart from being rejected) that was described up front as "possible mood swings." Mood swings my eye! - this was a case of outright paranoia - and, from my perspective as the patient, everyone else was at fault! Not me. By the 6-month post-transplant point I could recognize this, but not before.

Some Secrets of Success with Pills

"Now what? Look at this new refill on the Minipress (a blood pressure medication...) - they're white, not the brown/green capsules we're taking today." Just another example of the daily challenge. Just when you think you have them down pat, they move to a different generic version of the pill, and you have to wonder: is this the right pill? Go ahead, call and ask them, just to be sure. My pharmacist was most helpful and went back to check, returning with the news that they had indeed changed vendors for that one and the white capsules were correct. I felt much better now - so we got used to the new colors and moved on to the next challenge. I mentioned earlier that taking those 44 pills a day was "a piece of cake!" Well that's true if you can get past the smell of the Cyclosporine (a cod liver oil -ugh! - based capsule - but just think, others in the support group tell of the time, not so long ago, when that was taken in liquid form, not the capsules of today - now that I don't know if even I could overcome with a positive mental picture! - so I just count my blessings and move on). Everyone "helped" by being so empathetic with "here's that terrible smelling pill again..." - until I asked them to stop it - I had to take that pill (8 a day!) and couldn't do it if I focused on the "terrible smell" - so I just forget the smell and gulp it down with the rest of them like it had no smell at all - and it works! Side note: another of the 3 Heart BEATS suffered from a side effect of these meds that heightened his sense of smell - that really made the Cyclosporine tough to take - he could smell it coming down the hall! I was lucky (again). The morning handful of pills is usually taken with some tasty juice (I like orange juice - or the Cran-grape is very good too) - first the horse-pill (that big K-DUR) washed down with the juice, then half of the remaining pile of pills, gulp (with juice), then the 2nd half, gulp again (more juice) - and its all over in about 5 seconds! This is really a mental challenge and I like this approach over others who fight with each individual pill washed down with hot chocolate, for example. Life is just too short to take it up with all that 1 at a time, 44 pills a day! The good news is that the worst is only for the first couple of months. As time goes on, the number of pills is reduced again and again. Today, at the 7 month point, my count is down to ONLY (a relative point of view) 19 a day (9 pills in the morning before work, 1 with lunch, the rest before bedtime) - now really "a piece of cake!!"

What About Rejection?

Rejection is the subject of another monograph, but let me share our rejection experience as it relates to medications here. True to their word, the transplant team knew I was having rejection (from the biopsy) before I had any symptoms of it. At home, exactly at the 3-month milestone (God reminding me that even though I felt like "king of the road" - humility is a virtue and He still can recall His daily gift of life at any time?) we got word of the first (and only, to date...) rejection. Immediately medications were ordered by the transplant team for home delivery -in my case by infusion. Three bags of mega doses of one of my existing meds were delivered within the hour, followed by a home nurse the next morning to train us in how to take the meds - i.e., same as the IV we were so used to in the hospital. The nurse did the injection of the heparin loc, and we were trained to connect the tube from the bag of medicine to that loc - a simple task not involving putting any needle into the skin directly, only into that loc. Then I got to lay down for an hour while it drained into my vein, slowly so as to not cause headaches, accompanied by my favorite music - not a bad experience at all. My role was to lay down for an hour a day for three days - I did that real well! I'm good at lying down and relaxing, just ask Jay or the biopsy surgical teams. They all say I'm a great patient - because I lay there so good! I'm a natural! Two weeks after the 3-bag infusion experience, biopsy confirmed that the heart was out of rejection and all was well again (so far- but I certainly don't worry about the next time it will happen based on this positive experience). Again, I point out that this is just one experience, mine, and that others may have different regimens based on their own case. Ron, another of the 3 Heart BEATS, overcame his rejection with just an increase in his daily pills - no infusion. Hopefully, you too will be able to tell such a story when rejection comes - its part of the recovery process, and like they tell us, expect it - they (no, make that: YOU and they) can handle it!

Side Effects

About those side effects they warn you about, well, I decided since not all patients had them, they were optional and thus choose not to have them. Yeh - nice try, Jim. I told you about the mood swings - and then some - above. We survived them and are still happily married, thank you. I don't know if by understanding them up front, the patient can react any differently, so it may be up to the spouse and family/friends to carry the burden of understanding and see past those outbursts to the loving patient that they know is hidden (temporarily) inside this PMS body. My doctor's reaction: "You mean you haven't thrown dishes around the kitchen yet? Don't be surprised if you do - and then wonder why everyone's so upset just 5 minutes later." PS: No, I never threw the dishes around (thank God...) - and I hope you never do either. Hair growth came in heavy and over parts of the body it hadn't before (for a woman this may be a greater concern than for a man). No big deal! Even the fact that that hair was so wiry was a minor adjustment. At first the skin was very dry - so we rubbed it with lotion regularly (massages were nice too, especially foot ones done by my daughter, Mary) - then about month 2, the skin oils started flowing. In contrast to the dry skin, now it was a face washing several times a day to take off the excess oil. I used to apply a hair cream, now that was no longer needed - the body took care of it naturally. Again, a minor side effect. Water retention was overcome with surgical stockings and increased diuretics. Exercise (see the monograph on Exercise) helped balance the steroids' weakening of the muscles (especially leg muscles, causing some leg cramps in the first month - so I ate bananas to keep up potasium levels!). Whenever that exercise program was skipped, I felt it in those legs immediately. Weight (see the monograph on Weight Changes) was another major problem. From my precondition 270lbs (on a 6ft frame), I left the hospital after surgery very happy with 204lbs - Wow! I'd never let that weight go up again. Yes, I know what they told me about the steroids making you hungry and gain weight, but I felt this could be overcome by self-discipline. I still think that is possible, but I was not successful, putting some 45 pounds on over the 6 months after leaving the hospital. I really do feel I was eating better, but the weight kept going up (despite Dr. Kelley's warning: "Jim, weight will kill you!" - what more incentive did I need?) Today, with the reduction of those steroids, and with still more education, I am coming back down, having lost 10 pounds in the 7th month, and looking forward to slowly loosing all that I gained with a target of 200lbs - that weight did feel so good.

The most interesting side effect wasn't really a product of the meds, but rather an adjustment to the lack of nerve connections between the new heart and this body. In this case the transplant team's education was right on, and since the steroids hadn't clouded the thinking yet, it was fairly easy to adjust to the regimen of standing up, then waiting until blood was moving to the brain, before walking. Anytime this was forgotten, the body sent signals in the form of dizziness (lightheadedness) to remind me - a slight wait, and all was ready to go again. It was forecasted that this would last for years, if not my whole life. My experience was that by month 3, somehow the body had found alternate paths of communications and it was no longer a problem. Here at month 7, a similar symptom has returned (i.e., lightheadedness during exercise, passing quickly by just pausing to let the blood catch up to the head), but this seems related to a peaked high blood pressure that comes and goes very quickly. We still don't know the cause, but a loop monitor (a small walkman sized recorder worn over several days during normal home/work activity) was used to "capture" pictures of the heart's activity during these episodes, and all seems normal. Could it be that I'm carrying too much weight with that added 45lbs? Time will tell.

Another difference was noticed immediately after the actual surgery. My normal vision had been checked just before entering the hospital and found to be excellent - especially long distance. Walking the halls after transplant, distant vision seemed out of focus, causing a dizziness (not to mention the frustration). Well, I was thankful I could still read a book, at least. They assured me this was "normal" after anesthia and would wear off in a short while. Happily it did - but now I find myself holding reading materials out further to get the eyes to focus clearly. Again, I hope this too shall pass, but even that would be a small price to pay if it doesn't clear up.

Buying the Prescriptions

Our initial experiences with picking up that first prescription order at the local pharmacy was described earlier. Based on the forecasted changes in those meds needing to be carried out immediately based on biopsies, etc. we found that the insurance we had would require a co-pay that amounted to about $70/month. We were reluctant to use a mail order pharmacy because of the need for such quick adjustment. After 7 months I can tell you that our experience is that those meds are mostly changes in levels of the same meds and that once established, the idea of using a mail order source was very attractive. The mail order firm fills a 90 day supply, with the same single co-pay, thus we pay $70 every 3 months, saving $140 over the 3 months times $70 per month locally. Interestingly, when we originally asked the mail order company if they would exppedite mailing the prescriptions, especially in light of the big bucks involved. This particular company refused (but others do offer that service). When we finally did place an order with them, they insisted on mailing it FedExpress overnight with someone there to sign for it - because the value of the shipment was so high (i.e., $1,000). You figure!? If we had it to do over, we would have moved to the mail order source earlier, thus saving several hundred dollars.

The Cyclosporine is the big expensive one ($800/month for the 100mg capsules) and because it is so expensive, we found that most drug stores didn't have it immediately in stock. They were always able to get it by the next day or two, but just be prepared and don't let that one dwindle down to nothing before you call in the order.

Another interesting experience was when we found ourselves being admitted to the local hospital for treatment of SVT's (i.e., a racing condition of the heart). Naturally they told us they would have all our medications there at the hospital and to leave our meds at home. Why didn't I believe them? As a backup, I had Jay bring my plastic case of daily pills in the clothing bag, just in case. Again, they told us to take them home. I told Jay to quietly keep them there, just in case. By 10pm the floor nurses were still trying to get the full compliment of pills from the pharmacy - unsuccessfully - especially the Cyclosporine (of course). We found a floor nurse who used common sense - I mean, we had the pill right there and they couldn't find any - and I took my meds on schedule (with her knowledge...) and let them off the hook. Seems so very funny in retrospect, but very frustrating at the time. Oh, and another thing, I educate myself as much as possible on the various meds by reading the popular pill book. This is very useful, but also can be very disconcerting, what with all those possible side effects. That night in the hospital, I asked for and then spent the next 3 hours reading up (in the Physician's Desk Reference) on all the meds they were trying to control the SVT's with - this may not have been a good idea - some of those meds are downright dangerous, so don't do it unless you are mentally prepared to handle those insights.

Medications Record Form

As mentioned earlier, this medicine regimen is very complex. I found it useful to maintain (on my personal computer) a record of what Rx's I was taking, including the generic names, dosage levels, scheduled times for taking them, and finally a brief note as to what they were for. This came in handy in many ways, and I strongly recommend you come up with your own way of doing this same thing. First, it gave us a place to immediately record the changes that the transplant team called with after biopsies - thus our filling of those daily dosages were done against that form and always current. Second, carrying that same form with your driver's license makes it available for emergency personnel in the case of an accident or emergency. That's where the police look first when they come upon a victim - for identification. The EMT (Emergency Response Team) will need to know that you are immune suppressed, that the typical heart symptoms may be different in a heart transplant patient's case, and what meds you are taking. With so many Rx's, don't count on anyone (including yourself who may be incoherent at the time of the emergency) to be able to relate the full list (and amounts), and in some cases the EMT will not be familiar with some of the special RX's we take (hence the need for a couple of words on that form that tell what each med is for). In the home, that med list should be posted on the refrigerator door - again, that's the first place they're trained to look for. Whenever I went to the doctor's, emergency room, or even to the HUP transplant clinic, everyone was delighted to find this information so well organized and complete. At the hospital for testing of the SVT's (not the original hospital, this was a second one), the doctor even mistranscribed that list from my printout and I caught it when they came in with my meds in the hospital room. Of course the nurses insisted the doctor had prescribed that level and wouldn't accept my word that the doctor had taken it down wrong from my list. Upon checking, the doctor (intern) recognized the mistake and corrected his orders. Saved again!

PLEASE NOTE: The medications and dosages given below were prescribed for one individual (Mr. Gleason), given his particular needs and medical situation. This is not to be taken as medical advice, as each transplant recipient's needs will vary. If you have questions about your medications, you should contact your physician.

Jim Gleason's medicines prescribed by his physicians... (updated: 5/22/95)

  1. CYCLOSPORINE (250mg @ 9am, 9pm) - immune suppressant (4/4)
  2. IMURAN (100mg @ 9pm) - immune suppressant (2/28)
  3. PREDNISONE (5.0mg @9am on M,W,F ) - immune suppressant (5/16)
    (2.5mg @9am on S,Tu,Th,S) (5/16)
  4. LASIX (FUROSEMIDE) (40mg @9am ) - diuretic (5/22)
  5. OSCAL-D (500mg @ 9am, 9pm) - vitamin supplement
  6. BACTRUM (TRIMETH) (1pill @ 9am ) - prevent pneumonia
  7. ECOTRIN (aspirin)(1pill @ 9am on M,Th)- mild blood thinner
  8. MINIPRESS (PRAZOSIN) (1mg @ 9am, 3, 9pm) - reduce blood pressure
  9. ZANTAC (150mg @ 9pm) - control stomach acid
  10. K-DUR ( 20mg @ 9am 9pm) - potassium supplement (11/11)

Dietary: Low sodium (2000mg/day) ; Low fat (40gm); low cholesterol(200mg/day)

(Each person should create a similar listing of his/her own medications to have on hand; it's especially useful in the event of an emergency. Be sure the sheet includes the following.)


Social Security No.:

Home Address:

In Case of Emergency, please contact (spouse/family member, phone number)

Current medications and dosages:

Names and phone numbers of your physicians:

Note: I wish to donate my organs for transplant wherever possible

_________________- __/__/___ (name, signature, date)

Above: Medical Record form with Organ Donor Directive attached (updated to month 7)

In Conclusion

Don't misunderstand what I've been trying to say with some of these stories. Everyone is human and the professional staff that were my caretakers were the best! I can't say thank you enough for their loving care. But you as the patient in charge, must be responsible for yourself. Don't be afraid to challenge the treatment you are receiving. By understanding what is going on, you become an active member of the support team and increase your chances of successful recovery. Together, my family, friends, doctors and nurses (also counted among my friends) and myself have made it possible for this to be written. I don't know how much life I have in this second time around, but I am committed to doing everything in my power to maximize its potential (i.e., by sharing my experiences in writings for you like this...). "Thank you, everyone!" Sincerely and with HEARTfelt thanks, Jim Gleason

I hope this sharing will help you face your own challenge. It is my way of thanking you who helped in so many ways.

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