Rather than post up another entry bemoaning my on going trials (and trust me they are ongoing), I decided to write something up about trials past. Namely the procedure known as a heart biopsy. A myocardial heart biopsy is the definitive procedure used to determine if a transplanted heart is showing any sign of rejection.
A heart biopsy is a test in which small pieces of tissue are taken from the heart muscle, and examined under a microscope. Now a heart biopsy is not for the faint of heart (no pun intended) generally it supposed to be a relatively pain free procedure, but I know of several people who have to be sedated to deal with it.
When many hear the word biopsy, most think of long needles pushed into the body by a radiologist to retrieve tissue, a heart biopsy is a bit more complicated and invasive.
The Procedure:
• Prior to the biopsy, you asked to NPO, meaning no eating, no drinking. I had a ironically heart breaking experience in the hospital involving being NPO for a biopsy. Much of my time in the hospital I was nauseous an not hungry at all, one morning, however, my appetite came back, for once I was looking forward to breakfast. I waited almost excitedly for them to deliver my cheerios, only to have the nurse come in and announce that I was NPO - I didn't get to eat for another 3 hours.
• At USC the procedure itself happens in one of the fanciest procedure rooms I have ever scene. It involves fluoroscopy, or real-time Xray, thus there is a rather sizeable X-ray machine. The doctor has one of the monitors hooked up the PC, which he typically uses to listen to music on Pandora, which he unfortunately likes to tune to the Coldplay station. I fucking had Coldplay with a passion and I think Chris Martin has to be the douchiest douchebag to ever pick up a guitar outside of Dave Matthews. Luckily Dr. Barr began letting me pick the music after a while - and no I didn't complain.
• For me the procedure is always performed by my cardiothoracic surgeon and post-transplant care provider, Dr. Mark Barr.
• Before they, dig in so to speak, they clean the entry site, which has ad sometimes lead to partial shave, and usually leaves me with a big yellow splotch on my neck from the antiseptic.
• So now the question is, if they not get the tissue with a long-ass needle, then how do they get it. In most cases, a large vein on the right side of my neck (jugular vein) is used. That's right, the go in through the jugular to get to the heart.
• OK so they are going in through the jugular. They ain't doing this without some sort local anesthesia. They started me with straight Novocaine. Well, guess what, after 3 months in the hospital on everything from Vicodin, Morphine and more potent things, they might as well be injecting me with saline. The first couple biopsies were incredibly painful, the second bringing me to tears, all the while, Dr. Barr telling me, this shouldn't hurt, at all. Finally, one of the technologists suggested a drug cocktail using Lidocaine and Sensorcaine. The sensorcaine, seems to make the most difference, someone penetrating to the deeper nerve endings, and subsequent biopsies have been much less painful.
• After the area is numb, a catheter or tube is inserted into my vein. Which is where I get the most discomfort, Dr, Barr is essentially jamming a big plastic tube into my neck and he jams pretty hard.
• A special instrument, called a bioptome, is inserted through the tube and threaded into the heart with the help of fluroscopy. The bioptome is an instrument with small jaws on the end that open and close around small pieces of heart tissue. Once the bioptome secures a piece of tissue the instrument along with the piece of tissue is removed. I usually feel a few extra beats of my heart when the tissue is removed, but last time I could actually feel the bioptome being removed through the heart and vein. It doesn't hurt, per se, but it is surely one of the funkiest sensations I have every had.
• Once the heart tissue is removed, it is sent to the laboratory for study. If there is any evidence for white blood cells attacking the heart muscle, then BINGO, rejection. But guess what, I've had 9 biopsies and not any indication of rejection, and while rejection is possible at anytime, Dr. Barr doubts that I will have issues with it from now on. That's good, I've got enough issues at this point.
Philosophies differ greatly across the country on the number and frequency of heart biopsy, at UCLA a heart transplant will have up to 14 biopsies in the first year and routinely there after. At USC, where I had my heart transplant, however, the heart transplant patients generally get 8 in the first 6-8 months and then none ever again unless you show other signs of rejection. As I said, I've had 9 because a bout of dehydration made them concerned that I was rejecting.
Friday, November 20, 2009
Sunday, October 25, 2009
Too Much Information
Warning: A lot has been going on with me over the past couple months, some of it good, some of it bad, all of it going seems to continue to on and on
It is a time of good news and bad news for me. First the good news, my one year anniversary was onSeptember 24, 2009 . Outside of car accident that left Wendy without her car for a month, it was a good day. Wendy and I visited the hospital, delivered a cake and some thank you cards, and went out to a great dinner at Providence . Actually one of the best meals I've ever had. It was a significant day. It's been a year and I still have zero signs of rejection.
I continue to be on fairly low doses of anti-rejection drugs and tolerating it well, which is nice.
Unfortunately, from my perspective right now, that is about the end of the good news. In August, I let myself get a little too dehydrated and ended up getting a biopsy; of course it came up negative. Unfortunately, it was the start of a disturbing downward trend of my blood platelet count which culminated if me being admitted to the hospital. My platelet had dropped to 9k putting me at extreme risk of an inter-cranial bleed. They gave a treatment called IVIG, which had me hooked up to 2 liter IV bottle for 18 hours. Unfortunately, the pharmacy seemed to mess up the mixture and it gave me a 4-day migraine. Finally I got some relief from Imitrex. Unfortunately, since then, I've battled minor headaches, and I'm not allowed to take any meds for them. However, between the hospital, the migraine, and doctor’s appointments, I've been missing a lot of work, not good, as I was long ago out of sick time. Luckily, the IVIG treatment worked, and my platelets bounced up to 380k. I thought I was through it; I finally managed to get back to the Hematologist last weekend, only to find that my platelets were back down 19k. The ITP is beginning to look like a chronic problem, rather than an acute problem. The most frustrating part of it is that it is idiopathic, meaning they don't know the root cause of it. ITP itself is idiopathic, not just my case. The treatment for now is pulsed steroids, 4 days of Decadron every two weeks, with blood tests every week. It also means I'm on Zantac, because the steroid, tear you up. I started taking it in the evening but found that it keeps me awake; I will start taking it in the morning on the next pulse. NOW, last night I took the Decadron with the rest of my medications and now I'm suffering the most intense episodes I've ever felt. Every time I stand up, the world goes a little dark; I even fell to my knees once. Luckily I am at the end of the pulse, drinking lots of water, and hoping that once I get the Decadron out of my system it will go away. Still I have confidence in my doctors, I understand the difficulty of this particular problem, not knowing the cause, and having some many others health issue to thread it around. Speaking of which, I am still battling the BK virus. My viral count went back up to 40 million, which is to be expected with my increases in steroids. The goods news in this is that I'm still asymptomatic and another Dr., an expert on the BK/polyoma virus, said that that number is "Amateur", both I and Dr. Barr feel better about this.
So the out come of all of this is that I'm grounded. No mountain biking, most likely for 2 months - 2 months, which is unbelievably frustrating. Not just because I can't do it, but because I keep losing my fitness, it’s a struggle, I'm not making any gains in my climbing - on the bike and on the rocks for that matter. I have things I want to do, next year and I keep getting these set backs.
So with all this, I have begun to take Lexapro. For those of you who don't know, Lexapro is a anti-depressant. When I left the hospital, I was suffering from minor PTSD and recovering from Psychosis that I suffered while in the ICU. I finally went to a therapist in March, and as the PTSD clear up, it revealed a more deep seeded depression. After a couple months of therapy, my therapist finally advised me that she was worried that my depression was becoming a little more chronic and suggested an anti-depressant. Of course I was reluctant, but open, because I know I'm still having trouble, being sad for no reason, moody, unfocused, and generally unpleasant. So I went to a Psychiatrist, he agreed with my therapist’s diagnosis and prescribed Lexapro for me.
So the struggle continues for me. I have to admit that all of these issues are affecting the rest of my life, my home life, my work, but I won't go into those details. Right now, I'm kind of feeling like I just want this year to be over, to start over again.
Now, I know that as far as transplants go, I have it very very good. NO rejection, minor problems, great supportive doctors, great support at home. So I feel guilt for complaining, but I just felt like I needed to dump, I hope you don't think less of me for it.
Mostly I'm doing well, I just hope I don't pass out when I stand up from writing this...
It is a time of good news and bad news for me. First the good news, my one year anniversary was on
I continue to be on fairly low doses of anti-rejection drugs and tolerating it well, which is nice.
Unfortunately, from my perspective right now, that is about the end of the good news. In August, I let myself get a little too dehydrated and ended up getting a biopsy; of course it came up negative. Unfortunately, it was the start of a disturbing downward trend of my blood platelet count which culminated if me being admitted to the hospital. My platelet had dropped to 9k putting me at extreme risk of an inter-cranial bleed. They gave a treatment called IVIG, which had me hooked up to 2 liter IV bottle for 18 hours. Unfortunately, the pharmacy seemed to mess up the mixture and it gave me a 4-day migraine. Finally I got some relief from Imitrex. Unfortunately, since then, I've battled minor headaches, and I'm not allowed to take any meds for them. However, between the hospital, the migraine, and doctor’s appointments, I've been missing a lot of work, not good, as I was long ago out of sick time. Luckily, the IVIG treatment worked, and my platelets bounced up to 380k. I thought I was through it; I finally managed to get back to the Hematologist last weekend, only to find that my platelets were back down 19k. The ITP is beginning to look like a chronic problem, rather than an acute problem. The most frustrating part of it is that it is idiopathic, meaning they don't know the root cause of it. ITP itself is idiopathic, not just my case. The treatment for now is pulsed steroids, 4 days of Decadron every two weeks, with blood tests every week. It also means I'm on Zantac, because the steroid, tear you up. I started taking it in the evening but found that it keeps me awake; I will start taking it in the morning on the next pulse. NOW, last night I took the Decadron with the rest of my medications and now I'm suffering the most intense episodes I've ever felt. Every time I stand up, the world goes a little dark; I even fell to my knees once. Luckily I am at the end of the pulse, drinking lots of water, and hoping that once I get the Decadron out of my system it will go away. Still I have confidence in my doctors, I understand the difficulty of this particular problem, not knowing the cause, and having some many others health issue to thread it around. Speaking of which, I am still battling the BK virus. My viral count went back up to 40 million, which is to be expected with my increases in steroids. The goods news in this is that I'm still asymptomatic and another Dr., an expert on the BK/polyoma virus, said that that number is "Amateur", both I and Dr. Barr feel better about this.
So the out come of all of this is that I'm grounded. No mountain biking, most likely for 2 months - 2 months, which is unbelievably frustrating. Not just because I can't do it, but because I keep losing my fitness, it’s a struggle, I'm not making any gains in my climbing - on the bike and on the rocks for that matter. I have things I want to do, next year and I keep getting these set backs.
So with all this, I have begun to take Lexapro. For those of you who don't know, Lexapro is a anti-depressant. When I left the hospital, I was suffering from minor PTSD and recovering from Psychosis that I suffered while in the ICU. I finally went to a therapist in March, and as the PTSD clear up, it revealed a more deep seeded depression. After a couple months of therapy, my therapist finally advised me that she was worried that my depression was becoming a little more chronic and suggested an anti-depressant. Of course I was reluctant, but open, because I know I'm still having trouble, being sad for no reason, moody, unfocused, and generally unpleasant. So I went to a Psychiatrist, he agreed with my therapist’s diagnosis and prescribed Lexapro for me.
So the struggle continues for me. I have to admit that all of these issues are affecting the rest of my life, my home life, my work, but I won't go into those details. Right now, I'm kind of feeling like I just want this year to be over, to start over again.
Now, I know that as far as transplants go, I have it very very good. NO rejection, minor problems, great supportive doctors, great support at home. So I feel guilt for complaining, but I just felt like I needed to dump, I hope you don't think less of me for it.
Mostly I'm doing well, I just hope I don't pass out when I stand up from writing this...
Wednesday, October 7, 2009
Platelets up, Migrain gone
Well, I can easily say that the last 4 days have been the roughest for me since leaving first leaving the hospital after my transplant, just about a year ago. Over the past few weeks my platelet count had slowly been decreasing. Last tuesday, my platelets had dropped to 11,000, prompting my post-transplant doc to refer me to a hematologist. She ordered a platelet transfusion, which bumped the count up to 32,000, which was about half the response they were hoping for. Back on Friday to see if I'd had an more recovery, my platelets were back down to 9,000 - something in my body was destroying my platelets. The was no choice, I had to be admitted to the hospital for IVIG, which is basically a protein treatment - antibodies to go against existing antibodies which had been destroying my platelets. What was going to be a couple of boring days in hospital soon became the toughest days I've had in about a year. They started the IVIG at 1AM on Friday, and as is typical in the hospital, they don't let you sleep. By 11am, I'd begun to get a headache, which I didn't think too much of, I was short on sleep, but when you are low on platelets you are at risk for an inter-cranial bleed, CT came up clean, but nothing was helping my head, Tylenol - nothing, vicoden - nothing, morphine! - nothing. By 11 am on Sunday, my platelets had rebounded up to 83k, but my creatinen was rising so they stopped the second IVIG treatment and let me go home. For the next 2 1/2 I had the worst headache my life, that nothing would relieve, no vicoden, a late night dulaten treatment offered a couple hours of relief but nothing real. Finally back at the hospital for follow up blood work, one of the hematology fellow prescribed Imitrex for me. My platelets had rised up to 325k, and the Imitrex worked - my headache has abated. I'm back at work today, but very weak, because I haven't eaten much in the last four days. I've also got some rip-roaring indegestion from not eating and taking so much painkillers on an empty stomach - word to the wise. I can only guess that ll that extra protein from the IVIG really ticked off my chemical balance - I've never had a migraine like this before, but my God am I glad it's over.
Thursday, September 17, 2009
Another Anniversary Approaches
On Monday, I had some extra blood because some previous blood work had shown that I had very low platelets. Well, the platelet count is continuing to go down. As result, I was taken off my last non anti-rejection med, Lipitor, and one of my anti-rejection meds, Arava (which was a replacement for Cellcept). I'm not even 1 year out from my heart transplant. Even before these reduction, my post-transplant Dr., said I was on next to nothing. Now I 'm down to 2 mg of Prograf twice a day, and 5mg Prednisone. In addition to a Calcium supplement twice day, and a multivitamin. Don't get me wrong, I kind of like that I'm on so few medications, especially so soon after my transplant, but I can't help but feel uneasy about the whole thing. Still, I haven't had a hint of rejection, and they even took me off of my blood pressure meds because I was getting into better physical shape. It's hard for me to believe that this time last year, I was waking up from a coma, just barely breathing without a tube, unable to eat, unable to sit up, let along stand or walk. You know for some reason it sort of bothers me, people keep telling me how lucky I am, but I know it's true
Thursday, July 30, 2009
One Year
Hello everyone. One year ago today I had a heart attack. That evening, I was riding up the Chumash Trail to Rocky Peak in Simi Valley. I was struggling and I didn't realize it the time, but I was already have the heart attack that would change my life forever. I died that night, but I came back, after the fight of and for my life.
So tonight, I will head back to the Chumash Trail to Rocky Peak, and attempt to ride the trail again. It is not a terribly long trail (5 miles round trip) or difficult, but it will be a challenge for me, just as it was a year ago.
This is the first of several important anniversaries for. I will celebrate the date of my transplant for the rest of my life. However, with this bike ride, I hope to put this date behind me, and never "celebrate" it again.
The last year was truly the best and worst of my life. But I'm happy to have it, and even happier to be starting another. Thanks all who been there for me during the darkest and brightest days.
So tonight, I will head back to the Chumash Trail to Rocky Peak, and attempt to ride the trail again. It is not a terribly long trail (5 miles round trip) or difficult, but it will be a challenge for me, just as it was a year ago.
This is the first of several important anniversaries for. I will celebrate the date of my transplant for the rest of my life. However, with this bike ride, I hope to put this date behind me, and never "celebrate" it again.
The last year was truly the best and worst of my life. But I'm happy to have it, and even happier to be starting another. Thanks all who been there for me during the darkest and brightest days.
Tuesday, July 14, 2009
My pharmacy - we own the night
So last entry I went through the medications that I take in the morning. Now I am going to discuss my evening medications. There are some repeats, some that don't even really qualify as medications, and some that are not directly related to the transplant per se.
First I'll cover the repeats:
1. Prograf (Tacrolimus) 2.0 mg - Prograf has a 12 hour lifetime to the body at it's effective dose. As uch I have to take it every 12 hours to maintain a safe level of it's immunosuppressive affects. You may notice that the dose has dropped from 2.5 mg to 2.0 mg. This is not because I take a different dosage in the morning vs the evening, it's because it the time between writing the A.M entry and this one, my dosage has dropped, from 5.0 mg a day to 4.0 mg a day. I'm again, having trouble with my white blood cell count, so I'm not entirely sure that it will stay at this level. Either way, less meds is good, because it generally means that I'm doing well and my liver won't have to work as hard AND my kidney won't be in as much danger (it's doing fine right now)
2. Os-Cal - Apparently I have to take this twice a day as well. Hell, it's only a calcium supplement.
Here are the rest of the medications - Prograf is my only evening immuno suppressive
3. Valcyte (450 mg) - Valcyte is a n ant-viral medication that I take because I am susceptible to the CMV which can be extremely dangerous to transplant patients. So far, my experience has been that it does not cause any side-affects. Unfortunately, Valcyte is an extremely expensive medication that was not initially completely covered by the insurance company ($175 for a 1 month supply vs. $25). Luckily this was resolved through a number of methods. Also, of all my medications, this is the one that I know for sure I will be taken off of at my 1 year anniversary. Not long now.
4. Atenolol (5 mg)- Atenolol is beat blocker used primarily to control high blood pressure and elevated heart rate. I was put on this medication at the beginning of the year when my BP was running in the 145/1120 range (crazy high). This is normal for a transplant, because the heart is disconnected from the nervous system, so I don't have the same regulation wiring that most people have. I was in fact placed on two BP medications at this time. However about a week after being being placed on these medications, I started having extreme exhaustion in the afternoon and evenings, as well as some episodes of lightheaded-ness - I ever feel down a couple times. One evening, I nearly passed out driving home from work. Because of this my dosage was reduced, and the other med - Enalapril, was stopped completely. I'm now on one pill in the evening at a dosage of 5 mg. I still have issues with being light headed when I stand. Atentolol however isn't really for my BP, instead I take it to regulate by heart rate which was also running in the 110 bpm range. As such, now, on this dosage my BP runs ~ 110/76 and my heart rate is around 83 bpm.
5. Lipitor - We've all heard of this one from the TV commercials. It's a is a cholesterol reducer. Why do I need it, since my total cholesterol is 123? Well, now one is really positive why this happened but when I had my heart attack one of my ventricular arteries was completely blocked with plaque and my heart was covered in fat, the heart of an unhealthy 60-year old - which I certainly was not. Lipitor is NOT a typical post-heart transplant drug - for me it is prophylactic - a guard against whatever genetic/hereditary condition caused this.
6. Bactrim - This medication acts to prevent pneumocystis carinii pneumonia is one of the opportunistic infections frequently seen in patients taking immunosuppressive drugs. It's basically a prophylactic to keep from getting pneumonia since I'm immuno-compromised. My feeling is that I will likely never be taken off this one.
7. Prenatal Vitamin - Really this is just another multi-vitamin for me, to help replace essential minerals and vitamins that my other medications deplete. I honestly don't know why it is a prenatal vitamin, but that's what what they give me so I take it. Not that this is my attitude about my medications, but hell, it's vitamin, what does it matter.
So there you have. All of the medications (and pills) that I currently take. I expected things to go down with time, eventually reaching what they call a "maintenance" dose sometime after my 1 year anniversary.
In my next entry I will address how I feel about this - my frustrations, concerns, and overall perspective on having to take so many medications, and some for the rest of my life.
First I'll cover the repeats:
1. Prograf (Tacrolimus) 2.0 mg - Prograf has a 12 hour lifetime to the body at it's effective dose. As uch I have to take it every 12 hours to maintain a safe level of it's immunosuppressive affects. You may notice that the dose has dropped from 2.5 mg to 2.0 mg. This is not because I take a different dosage in the morning vs the evening, it's because it the time between writing the A.M entry and this one, my dosage has dropped, from 5.0 mg a day to 4.0 mg a day. I'm again, having trouble with my white blood cell count, so I'm not entirely sure that it will stay at this level. Either way, less meds is good, because it generally means that I'm doing well and my liver won't have to work as hard AND my kidney won't be in as much danger (it's doing fine right now)
2. Os-Cal - Apparently I have to take this twice a day as well. Hell, it's only a calcium supplement.
Here are the rest of the medications - Prograf is my only evening immuno suppressive
3. Valcyte (450 mg) - Valcyte is a n ant-viral medication that I take because I am susceptible to the CMV which can be extremely dangerous to transplant patients. So far, my experience has been that it does not cause any side-affects. Unfortunately, Valcyte is an extremely expensive medication that was not initially completely covered by the insurance company ($175 for a 1 month supply vs. $25). Luckily this was resolved through a number of methods. Also, of all my medications, this is the one that I know for sure I will be taken off of at my 1 year anniversary. Not long now.
4. Atenolol (5 mg)- Atenolol is beat blocker used primarily to control high blood pressure and elevated heart rate. I was put on this medication at the beginning of the year when my BP was running in the 145/1120 range (crazy high). This is normal for a transplant, because the heart is disconnected from the nervous system, so I don't have the same regulation wiring that most people have. I was in fact placed on two BP medications at this time. However about a week after being being placed on these medications, I started having extreme exhaustion in the afternoon and evenings, as well as some episodes of lightheaded-ness - I ever feel down a couple times. One evening, I nearly passed out driving home from work. Because of this my dosage was reduced, and the other med - Enalapril, was stopped completely. I'm now on one pill in the evening at a dosage of 5 mg. I still have issues with being light headed when I stand. Atentolol however isn't really for my BP, instead I take it to regulate by heart rate which was also running in the 110 bpm range. As such, now, on this dosage my BP runs ~ 110/76 and my heart rate is around 83 bpm.
5. Lipitor - We've all heard of this one from the TV commercials. It's a is a cholesterol reducer. Why do I need it, since my total cholesterol is 123? Well, now one is really positive why this happened but when I had my heart attack one of my ventricular arteries was completely blocked with plaque and my heart was covered in fat, the heart of an unhealthy 60-year old - which I certainly was not. Lipitor is NOT a typical post-heart transplant drug - for me it is prophylactic - a guard against whatever genetic/hereditary condition caused this.
6. Bactrim - This medication acts to prevent pneumocystis carinii pneumonia is one of the opportunistic infections frequently seen in patients taking immunosuppressive drugs. It's basically a prophylactic to keep from getting pneumonia since I'm immuno-compromised. My feeling is that I will likely never be taken off this one.
7. Prenatal Vitamin - Really this is just another multi-vitamin for me, to help replace essential minerals and vitamins that my other medications deplete. I honestly don't know why it is a prenatal vitamin, but that's what what they give me so I take it. Not that this is my attitude about my medications, but hell, it's vitamin, what does it matter.
So there you have. All of the medications (and pills) that I currently take. I expected things to go down with time, eventually reaching what they call a "maintenance" dose sometime after my 1 year anniversary.
In my next entry I will address how I feel about this - my frustrations, concerns, and overall perspective on having to take so many medications, and some for the rest of my life.
Saturday, June 20, 2009
My pharmacy - steppin to the A.M.
Pretty much every person who knows or finds out about my transplant eventually asks me about my medications. It's a reasonably well know fact that transplant patients have to take medication for the rest of their life. I am no exception. With so many questions about these meds, I thought it might be useful to post up a detailed list and description of my medication list so that people know what I'm dealing with here. Right now I take two medication twice a day, every 12 hours. For me, because of my work schedule, that means at 7am and 7pm. The combinations are slightly different in the morning than the evening, both because some meds only need to be taken once a day, and because when I first got out of the hospital I have lots of trouble with nausea, like 24/7 nausea, and one solution was to cut down taking all my once a day meds at once. All that has changed, though as my medication has slowly gone down in the last 7 months. Anyway, here's a list of the medications that I take and a brief description of what the do:
AM Medication:
1. Prograf (Tacrolimus) 2.5 mg - Prograf is an immunosupressive drug whose main use is after organ transplant to reduce the activity of the patient's immune system and so lower the risk of organ rejection. This is my main ant-rejection medication and one that I will be on for the rest of my life. The dosage may change, but it likely at the lowest it will go for me. Many people have side effects with Prograf at higher dosages (common for other type of organ transplant, especially kidney and liver, but not for heart), as far as I can tell, I've had no side effects. One of the most serious side effects is nephrotoxicity.
2. Prednisone 5 mg - Like several of the medications on this list, prednisone has a number of uses, which are too numerous to list here, but it is is particularly effective as an immunosuppressant, and affects virtually all of the immune system. It can, therefore, be also used in autoimmune diseases, inflammatory diseases asthma, severe allergies, rheumatoid arthritis, among many others. It common for many transplants patients to start on prednisone, but eventually be taken off of it. I, however, will be on prednisone for the rest of my life because my doctor "doesn't believe in steroid-free". Yes, it is a steroid, though as far I can tell, it isn't making my muscles huge. It does have some typical steroid side effects, most of which have faded as my dosage has gone down (5 mg is the minimum dose). At one point, I had a moon face, abnormally fat from the steroids, as well as more black heads (especially on my forehead) than I've have in 20 years. Another side effect of prednisone is Steroid-induced osteoporosis. Because of this, I wasn't allowed to begin mountain biking in earnest until recently. It also require me to take the next "medication"
3. Os-Cal (I don't know the actual dosage off the top of my head, to me it's one tablet) - Os-cal is a calcium supplement fortified with vitamin D. It's a huge green caplet, but it's coated so it isn't too difficult to take. I take the Os-cal to counteract the steroid-induced osteoporosis caused by the prednisone. As with most supplements, it doesn't seem to have any side effects. As I said, my doctor doesn't believe in steroid free so I'll be on this one the rest of my life. Not a big deal unless it somehow gives me kidney stones.
4. Arava (Leflunomide) - This could be the strangest of all my medications. It's also the newest. Back is March, after my 8th and final biopsy, it was found that my white blood count had dropped to nearly nothing. My Dr. attributed it to a sudden sensitivity to my medication Cellcept. Which made sense to me. In about of blind optimism I wondered if this was evidence that my body was accepting the new organ. Here was my logic. Because of the transplant, my body had received a foreign body (my new heart). My immunoreponse of course is to get rid of this foreign body (rejection!). To prevent rejection, I take immunosuppressive drugs which suppress my white blood cells. Baasically the immune system over produces white blood cells, and the drugs suppress this. But what if the body accepted the foreign body? Would that mean that the body suddenly doesn't need to over produce the white blood cells? I don't know, but this was my thinking. If my body stopped over producing, then an immunosuppressive drug would cause the white blood cell count to go waaay down. So, does this mean that I'm accepting the new heart - I don't know, but I'm certainly not gonna change what I'm doin unless my Dr says so - I recommend the same any heart transplants who read this. So the Arava - the Doctor took me off the Cellcept and a couple weeks later, after my white blood cell count returned, they put me one Arva (Leflunomide). Funny thing - Arava is not an immunosuppressive drug - it is a rheumatoid arthritis drug. It is a rheumatoid arthritis drug that has both immunosuppressive side affects and anti-viral side affects. Yes, I'm still have trouble with the BK virus and that was one of the reason why he put me on that. The rough thing about Arava is that out of all my meds it has the worst side affects. That's not saying much though, and they aren't that bad. I had pretty frequent GI issues, about every other day - I'll just leave it at GI issues. Also, I have an on-and-off rash on my hands.
This is the first installment of two, with one more about my PM meds. At the end of that I'll ruminate a bit on my meds and I will give some hints of what I know about my future with my meds.
AM Medication:
1. Prograf (Tacrolimus) 2.5 mg - Prograf is an immunosupressive drug whose main use is after organ transplant to reduce the activity of the patient's immune system and so lower the risk of organ rejection. This is my main ant-rejection medication and one that I will be on for the rest of my life. The dosage may change, but it likely at the lowest it will go for me. Many people have side effects with Prograf at higher dosages (common for other type of organ transplant, especially kidney and liver, but not for heart), as far as I can tell, I've had no side effects. One of the most serious side effects is nephrotoxicity.
2. Prednisone 5 mg - Like several of the medications on this list, prednisone has a number of uses, which are too numerous to list here, but it is is particularly effective as an immunosuppressant, and affects virtually all of the immune system. It can, therefore, be also used in autoimmune diseases, inflammatory diseases asthma, severe allergies, rheumatoid arthritis, among many others. It common for many transplants patients to start on prednisone, but eventually be taken off of it. I, however, will be on prednisone for the rest of my life because my doctor "doesn't believe in steroid-free". Yes, it is a steroid, though as far I can tell, it isn't making my muscles huge. It does have some typical steroid side effects, most of which have faded as my dosage has gone down (5 mg is the minimum dose). At one point, I had a moon face, abnormally fat from the steroids, as well as more black heads (especially on my forehead) than I've have in 20 years. Another side effect of prednisone is Steroid-induced osteoporosis. Because of this, I wasn't allowed to begin mountain biking in earnest until recently. It also require me to take the next "medication"
3. Os-Cal (I don't know the actual dosage off the top of my head, to me it's one tablet) - Os-cal is a calcium supplement fortified with vitamin D. It's a huge green caplet, but it's coated so it isn't too difficult to take. I take the Os-cal to counteract the steroid-induced osteoporosis caused by the prednisone. As with most supplements, it doesn't seem to have any side effects. As I said, my doctor doesn't believe in steroid free so I'll be on this one the rest of my life. Not a big deal unless it somehow gives me kidney stones.
4. Arava (Leflunomide) - This could be the strangest of all my medications. It's also the newest. Back is March, after my 8th and final biopsy, it was found that my white blood count had dropped to nearly nothing. My Dr. attributed it to a sudden sensitivity to my medication Cellcept. Which made sense to me. In about of blind optimism I wondered if this was evidence that my body was accepting the new organ. Here was my logic. Because of the transplant, my body had received a foreign body (my new heart). My immunoreponse of course is to get rid of this foreign body (rejection!). To prevent rejection, I take immunosuppressive drugs which suppress my white blood cells. Baasically the immune system over produces white blood cells, and the drugs suppress this. But what if the body accepted the foreign body? Would that mean that the body suddenly doesn't need to over produce the white blood cells? I don't know, but this was my thinking. If my body stopped over producing, then an immunosuppressive drug would cause the white blood cell count to go waaay down. So, does this mean that I'm accepting the new heart - I don't know, but I'm certainly not gonna change what I'm doin unless my Dr says so - I recommend the same any heart transplants who read this. So the Arava - the Doctor took me off the Cellcept and a couple weeks later, after my white blood cell count returned, they put me one Arva (Leflunomide). Funny thing - Arava is not an immunosuppressive drug - it is a rheumatoid arthritis drug. It is a rheumatoid arthritis drug that has both immunosuppressive side affects and anti-viral side affects. Yes, I'm still have trouble with the BK virus and that was one of the reason why he put me on that. The rough thing about Arava is that out of all my meds it has the worst side affects. That's not saying much though, and they aren't that bad. I had pretty frequent GI issues, about every other day - I'll just leave it at GI issues. Also, I have an on-and-off rash on my hands.
This is the first installment of two, with one more about my PM meds. At the end of that I'll ruminate a bit on my meds and I will give some hints of what I know about my future with my meds.
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