Tom Volk's health update
updated January 4 2009. See latest update at the end of this page.
Please click TomVolkFungi.net for the rest of Tom Volk's pages on fungi
May 22, 2006 How can you mend a broken heart?
After 4 months on the transplant list, and after several years of heart problems, I have been fortunate to receive a new heart on Monday May 22nd at about 6:30am at Saint Mary's Hospital in Rochester, MN. Saint Mary's is one of the two hospitals that is part of the Mayo Clinic. The surgery went well and only took about 3 1/2 hours. So far I am recovering nicely and hope to move out of the transplant ICU soon. From the ICU I will move to another room on this floor for several more days. Many thanks to all who have called, emailed, and sent cards. I really appreciate your support and I will try to keep ya'll updated with my condition. Bernadette O'Reilly has been staying with me almost all the time. Thanks Bernadette!
Even though I may never know who they are, I am very grateful to the person and the family who donated their heart to me. You can click on the ribbon to the right to find out how to become an organ donor in your state. Please sign up and potentially share your life with others. Thanks!
May 29, 2006 First time on the computer with my new heart
It's been a week now, and this is the first time they let me on the computer since I've been here. I'm doing pretty well, and my pre-owned heart is "pounding" in my body. I walked for about an hour today and may get out of the hospital later this week. I will have to stay in Rochester (mostly) for about 3 months, maybe somewhat shorter. The whole thing is still fairly surreal, and I haven't quite sorted things out.
May 31, 2006. Heart update
I'm doing well here. I just walked for about 20 minutes and everything seems well. It's hard to believe it's only been 10 days since my heart transplant. Amazing. They will probably let me out tomorrow. I would have been out by now, except my heart rate is lower than they would like. I am not having problems breathing or anything, but they are very cautious.
When I leave the hospital, I will be going to the Gift of Life Transplant House for a while. Because of extensive follow-up, I'll have to stay in Rochester for at least a couple months. I'll keep you updated.
Thanks for all of your support. I will try to eventually get to individual emails.
June 2, 2006. My heart and I are out of the hospital
After what is apparently a successful heart transplant, I was "released" from the hospital today and moved into the "Gift of Life Transplant House'" sort of like a Ronald McDonald house for adults. I will have to stay in Rochester for a couple months, and not sure when I can even travel out of the city for short times, maybe after a month. They're still keeping pretty close watch on me, and I even have to go for blood tests this weekend and 4 days next week.. My heart rate has gone up some (this is good, as it had been low) as I try different drugs and their combinations. No pacemaker for now. My new heart is very strong and sometimes it feels like it's pounding in my chest, with much more force than my old crummy heart.
I still have lots of recovery. My incisions still have to heal. I'm sore from lying in a hospital bed and (mostly) the reclining chair. I have a huge drug regimen that will constantly change as we try to prevent rejection of the new heart. But I can walk fairly vigorously for at least 20 minutes now, something I haven't been able to do for a while. It's only going to get better from here. It's still very surreal to think of having someone else's heart in me, and most often I still can't believe it.
June 5, 2006. 2 weeks after transplant.
Just a short update. I've been progressing very well after my Heart Transplant two weeks ago today. In fact almost exactly to the hour since the surgery was finished. I have moved into the "Gift of Life Transplant house" (see gift-of-life.org) I've been there only 2 days, so it seems very good so far. Very clean and lots of friendly people to talk with who have had transplants
I've still been walking a lot, and trying to sleep a lot. I have Doctor's appointments or blood tests almost every day, and they will do the first biopsy of my heart in a couple days to check for rejection.
June 8, 2006. Take a little piece of my heart
Hi All. I'm doing pretty well today. I have been walking a lot, and Debby Hanmer, my caregiver for the week, even took me to the park to walk today. It was nice to be in the woods (with a mask on, of course, and touching nothing...) There's noting like a breeze on the neck to make me happy.
I had my first heart biopsy yesterday. The doctors went in through a vein in my neck with a catheter (hollow wire) then snipped out a little piece of my heart to examine microscopically. Later, in the afternoon, they called with the results, and I had scored a 0 (zero) meaning no sign of rejection of my new heart! very good news. I have to have one biopsy per week for the next 3 weeks, then every other week after that. Eventually the time between biopsies lengthens to 4-6 months or longer. If they find any signs of rejection they would just change the dose of my drugs. But this is the first time I was glad to score a 0 on a test
The doctors are still fiddling with my dosages of my medicines, some of which have short term and long term side effects, but they really have a lot of experience. there have been blood tests nearly every day, which aren't so bed. The only problem is that they are 630 or 7am
I am staying at the "Gift of Life Transplant house." It's very nice and is starting to feel more homey as I meet people and get used to being very clean-- if you can imagine that. I have a very nice corner room with 2 windows. there are common areas for cooking, dining, socializing, reading, using computers, and watching television.
June 15, 2006. Take another little piece of my heart, now baby.
I scored another 0 (zero) on my second heart biopsy yesterday. 0 means no signs of rejection. YAY! I guess the drugs are working. They test every week these first four weeks then twice a week after that, then once a month, and so on. Bette Kirby is my caregiver for the week. Thanks Bette!
I am still getting used to my heart rate being in the 90's, which where they doctors want it to be. Before transplant I was being paced at 60 beats per minute, much more slowly. I am sleeping better at night since I'm getting more used to the strong heartbeat. So I continue to be very optimistic.
I'm also doing well with cardiac rehab. I walked for 45 minutes yesterday evening and 55 minutes the eve before, which is something I certainly could not do before the transplant. I rode the exercise bike 4.7 miles today also. So things continue to look good. My weight is down considerably and although I eat well, I don't seem to gain any weight--I think all the energy is being used to heal my heart connections and my incision down my chest.
Thanks for all of your support. If you would like to visit let me know. I will have tests only twice a week instead of 3X per week. so I will have more time. Due to germ reasons, unfortunately kids under 17 are not allowed in the transplant house.
June 24, 2006. Deep in the heart of Mayo
35 days after my heart transplant, I'm doing pretty well here in Rochester Minnesota. Anna Gerenday has been my caregiver staying with me. Thanks Anna!. My biopsy results this week were not as good as the previous ones, but nothing to worry about. They took 4 pieces during the biopsy and 3 of them were great, but the 4th one had a "slight swelling" in one of the cells, which is enough to gives me a rating of 1R, a very mild rejection of the new heart. The doctors say this is very common, and almost all transplant patients experience this. They don't even bother to treat it. So although it's somewhat disappointing to not get a zero, this is ok too. The scale of rejection runs from 0-4 with varying degrees of treatment, mostly involving increasing the immunosuppressive drugs (I'm on prednisone and cyclosporine ( see botit.botany.wisc.edu/toms_fungi/Jun2006.html -- it's this month's Fungus of the Month!) . My next biopsy is Friday June 30..
I think I got a pretty good heart that's working very well. One of my doctors called me "the poster child for heart transplants." I've started cardiac rehab and went three times this past week. I rode the stationary bike about 7 miles Monday, and used the stair stepper two other days I climbed about 1700 stairs each of those days. On Friday I even got to lift some weights, although limited because of the big incision down my chest, which actually is healing pretty well. I have been walking at least 45 minutes per day, which is MUCH more than I could walk before the transplant. I walked about and hour and a half this morning, which involved gong up a relatively steep hill.
I'm eating a lot, but not gaining much weight-- I'm down several pounds from my pre-transplant weight, which is normal.. I guess the calories are all going toward healing rather than anywhere else. I will probably be in Rochester for at least another month, maybe longer. One of the reasons Mayo has such a successful record in transplants is their very extensive follow-up. So far I have not found Rochester very interesting, but I have spent much of the time going to doctor's appointments and all that. They have cut back to seeing me only twice a week, so that will give me more opportunity to "see the sights," including the giant ear of corn that serves as the water tower at the Libby's corn processing facility near the county fair!
July 3, 2006. Total Eclipse of the Heart
It is 6 weeks after my heart transplant. It's hard to believe it has been that long. I had my fourth heart biopsy on Friday. They stick a catheter in through my jugular vein [we used to cal it the juggler vein...] in my neck and snip out little pieces of my heart. This is a test to determine whether my body is accepting my new heart. I scored another 1, which is "very mild rejection.". You'll recall the first two weeks I got zeros (no rejection visible) and last week I got a 1. Like last week three of the samples were "normal" and the fourth sample had one abnormal cell in it. They do not treat 1's because it's only sign of a very mild rejection. My next biopsy is not for another two weeks, July 14.
So although I'm only 6 weeks out, I'm doing very well here, doing lots of walking and cardiac rehab. Now that my incision is healing pretty well (although it still looks bruised), I even get to lift some weights now, to get some upper body strength back. I have managed to gain 3 pounds back from my lowest weight. I eat a lot, but I'm very restricted in what I am allowed to eat because the cyclosporine (my immunosuppressive drug, which prevents organ rejection-- see botit.botany.wisc.edu/toms_fungi/Jun2006.html) also raises my potassium to potentially unsafe levels. (Did you know the last thing they gave a person for lethal injection for the death penalty is a very high dose of potassium chloride? I'm learning so much here...) . Unlike most people, who need more potassium, mine is restricted, and they watch it very closely. You would be surprised how much potassium is in some foods. The cyclosporine also gives me tremors, with my hands shaking quite a bit under some circumstances, along with other parts of my body. the doctors say that will go away when they can reduce the cyclosporine level eventually. Eventually they will switch the cyclosporine to another drug.
It's been fun having visitors. Thanks to those who stopped by or called or prayed or just thought happy thoughts about me.
Everything's going well, and there's no biopsy this week. I have been walking and riding the bike and stairstepper, and even lifting some weights. It's getting a little monotonous here, but frequent visitors have kept things from getting dull. More appointments today, then not again until next Thursday. Bernadette O'Reilly, Melanie Winter and crew are helping to clean my house and make it "sterile" for my eventual return home to La Crosse. Thanks to everyone who has been able to help!
July 16, 2006 Home is where the heart is
And home is where my Heart and I are today!
Almost 8 weeks after my (apparently successful) heart transplant, I left the Gift of Life Transplant House this morning and I'm now at my home in La Crosse. My doctor again called me the "poster child for heart transplants." I think he meant that in a good way, not the side of the bus, sad child asking for money…
8 weeks is relatively soon to be going home after a transplant, but starting last week, I have only one day of tests and appointments each week. Since La Crosse is only about 70 miles from the Mayo Clinic in Rochester, it will be easy enough to stay in La Crosse and drive to Rochester for my tests once a week. So I get to stay at my own house in La Crosse! It's keen.
However, my immune system is still compromised (and always will be, although less at later times) from taking cyclosporine and prednisone. These drugs prevent rejection of my new heart. Friday's biopsy was a 1 (one) again, but "resolving," which means things are better than they were at the last biopsy two weeks ago. So I have to be careful about getting an infection, since my immune system can't deal as well with microbes. So things had to be cleaned at my house to avoid infections. (I know *way* too much microbiology at this point.) Bernadette, my student, organized a crew of people to clean.
This means that I came home to a house I could barely recognize. Things kind of snowballed from what I thought was just supposed to be a dusting, vacuuming, and rearranging; they boxed up everything, rewashed all my clothes, cleaned the kitchen, including the refrigerator, rewashed all my dishes, replaced some floor boards in the kitchen, dragged out some of my old furniture, got some new glass front cabinets, and even repainted all my rooms. I think there are even improvements I have not yet discovered. New linoleum for the kitchen and new carpet for the living room are on the way. Thanks to all the volunteers who were able to help out. Everything looks great. Of course now I have to find everything in their hidden boxes to put them back where I want them. I guess that will give me something to do…
So if you're in the area, you're welcome to visit. I'm allowed to drive, and I'll be in to school for brief periods. Everything's torn up and being cleaned and remodeled there also-in my office and in my lab. Sorting and putting everything back will be fun.
August 2, 2006. The Tell-tale heart.
I'm doing well here. After my heart transplant on May 22, I had my 6th biopsy Thursday July 27. They go in through my jugular vein and snip out a little piece of my heart, then examine it under the microscope to check for rejection. I was very happy to get a score of 0 (zero) which means no sign of rejection. YAY. You may remember that my last three biopsies were scored 1's (one), which means there was evidence of very mild rejection. That seems to have been resolved.
My next biopsy is August 8, at which time they will also do a catheterization, looking to see if there are any cholesterol deposits. They don't expect to find any, but this will give the doctors a baseline to measure any possible later problems. They will also do another test to determine the thickness of my arterial walls, also for future reference. I do not yet have a schedule for what happens after that, but I know I have to do a stress test on the treadmill in a couple weeks.
Things are gong well at my house, and it's nice to be home. Besides all the cleaning and painting that was already done, the new linoleum is installed in my kitchen. The new carpeting for my living room is ordered and will be installed in a couple weeks. New dishwasher is on the way. The garage is mostly cleaned out, and piles of stuff are ready to go to Goodwill. I'm slowly unpacking my boxes of stuff from my house and at school. I moved some of the furniture back into my office, although there is much less than there was before. Now I have to decide what else to put back in. It's very fun. Come visit when you get the chance.
August 8, 2006 Heart of Gold
Hi All. It's now 11 weeks after my heart transplant (already!), and I'm doing well. I just got out from seeing the doctor about my heart biopsy today (I'm even still in Rochester for the evening. How's that for efficient reporting?) and scored another 0 (zero)! This of course means no sign of rejection. Today they also did an angiogram, where they inject dye into the blood vessels of my heart, looking for any possible blockage. They did not expect to find anything (and didn't) but this is a baseline for future tests. They also did an Intravascular Ultrasound (IVUS) to look at the thickness of the walls my blood vessels. Both tests showed that I got a great heart.
We are trying a lower dose of immunosuppressive drugs (cyclosporine and prednisone) and having another biopsy in about 2 weeks, before school starts. Then I should be able to go just once per month for a while. I have a cardiac stress test on the treadmill next Monday. I have been practicing on the treadmill at cardiac rehab in La Crosse. I still am getting sore, but mostly from lifting weights and other exercise.
I'm doing well at home, still moving stuff around to find its "natural" place. The new carpeting will be installed Thursday, then I'll have all the ductwork cleaned. It's great to have things clean and redone. I have also started moving things back into my office, which has also been cleaned. I'm throwing a lot of stuff away, or at least putting it somewhere else. You would not recognize my office if you have ever been in there before. Classes start 4 weeks from today.
I'm even well enough (as long as I don't touch anything. I will have plenty of sterilizing hand lotion with me) to go to Madison for the Drum Corps show this Thursday Friday and Saturday, I have not been to the national finals or many other drum corps shows in about 10 years-- it's always conflicted with a mushroom foray or other event. It will be fun. I didn't even get to see the Warren band from Ohio (wjmb.org) this year because I was still recovering-- remember that I played my trumpet in the band in 1972-1979 and choreographed for the band from 1979-1996. I've managed to see them on their annual trip to Wisconsin the past nine years, but missed this year. Next time...
So that's the good news for the day. I hope everyone is doing well.
August 27, 2006. With a Song in my Heart
Hi All. Here's another update. 95 days after my heart transplant, I had another heart biopsy on Friday August 25. And I got another 0 (zero)! Of course this means no sign of rejection. This time I did not take a sedative during the biopsy, only a local anesthetic. I got to watch the live X-ray on the video screen of the catheter going from the jugular vein in my neck into the right ventricle of my heart and snipping five pieces out. It was *very* cool to watch. They also showed me the tiny pieces of my heart they had snipped out-about 1 mm in size. This was my last biopsy for about a month-and I don't even have to go back to Rochester for blood tests until then! So everything is looking good. The doctor had lowered the dose my immunosuppressive drugs (prednisone and cyclosporine) about 2 weeks ago, and they wanted to see if this lowered level still prevented rejection. And it did. In about two weeks we will lower the dose again, and in a month test for rejection. No date is set yet.
When I saw my cardiologist afterwards, he told me all the results of my blood test were "normal." While I was there, I also got to see my old heart, dissected and preserved in formaldehyde. Yes it was sort of weird to see it. I took lots of pictures because they wouldn't let me have it. Rather than attach one of the pictures to this email (in case you're squeamish), here is a link to a picture of me holding my old heart. You can decide for yourself if you really want to see it. You've been warned. :) Click here Overall I had a very interesting day at the Mayo Clinic.
Cardiac rehab is going well and I will probably "graduate" very soon and go to a regular exercise regimen at our school gym. I have still been walking a lot after doing very well on my treadmill test last week. I had a cold last week, so that was my first experience with having a disease while immune suppressed. It was good to know my immune system can still fight off a viral disease while not attacking (rejecting) my new heart.
School starts in about 9 days, so everyone is getting ready for classes. It will be a fun year.
***A friend is someone who knows the song in your heart and can sing it back to you when you have forgotten the words.
September 9, 2006. I [heart] school.
Here it is 109 days after my heart transplant, and I'm doing very well. I made it through the first week of school with no problems, although I'm way behind on the Fungus of the Month. It's finally online after a very busy last few weeks. Dr. John Rippon, the "god of medical mycology" and my good friend, was here to visit me the past several days, and it was very good to see him. Yes, school has started, and I have 17 students in Mycology, and this has been a very good mushroom year so far. I'm being very careful in the woods and even with the fungi in class. I'm also teaching Genetics Labs for the first time, and I am already having nightmares about fruit flies. However, my health has been very good, and it's been great not to have to go to Rochester for a couple weeks. I "graduated" from cardiac rehab, and I now get to exercise on my own. I'm still walking a lot and lifting weights, gaining a few pounds here and there.
October 9, 2006. Ace of Hearts
I'm doing very well here, 133 days (!) after my heart transplant. I had another biopsy today and scored a 0 (zero), which means that there are no signs of rejection. This is significant because two weeks ago we lowered the dose of prednisone, one of my immunosuppressive drugs, and there was still no rejection. I will probably have another biopsy in about a month, after we try lowering my dose again. All my other drugs will pretty much remain the same for now, including my other immunosuppressive drug cyclosporine.
All my other blood tests were very good- my doctor called them "boring." My cholesterol levels and blood sugar levels were quite good, as were my potassium and sodium levels. My kidneys and liver are very happy. My white blood cell counts were normal-no infections. Everything continues to go well. My weight has increased almost to my level before transplant.
We have started our fifth week of classes already, and those are going well also. I am teaching and researching full time again. I am teaching Mycology for 17 students. I have been able to get out in the woods fairly often, which is good since we are having a great mushroom season this year. I wear a mask and gloves to avoid picking up any possible infections, and so far it's working quite well. I have not been to any weekend forays at all. I thought it would be better to wait a while before doing that, even though I miss all my mushroom friends. I am also teaching Genetics labs for the first time, and I am enjoying it, although I do get tired after standing for three labs in a row and I am having bad dreams about fruit flies.
My house is doing very well and it's still clean. All the major revisions are done-I finally got my ducts cleaned and had a HEPA filter put on the furnace, so it will filter the particles (and diseases) out of the air in my house. I can really tell the difference when I walk in.
So, there's really nothing very exciting to report. I'll take "boring" any day.
November 9, 2006. Saved by zero
It's hard to believe that it's been almost 5.5 months since my heart transplant (170 days!). I'm doing very well here, still teaching full time and enjoying myself. I had another heart biopsy on Tuesday Nov. 7 and scored another ZERO, which means no rejection of my new heart. Blood tests were all great. It's pretty amazing. Since I've had so many zeros in a row, I get to reduce my immunosuppressive drugs, even the cyclosporine this time. We will reduce my immunosuppressive steroid, prednisone, a couple weeks before my next biopsy in mid- December. This is good news because prednisone has some long term bad side effects. After that, if I do well it will probably be three months until the next biopsy. Now I just have to make it through the winter without getting an infection. It looks like I will be able to start going to forays again soon, with the continued reduction in my immunosuppressive drugs. My weight is back to what it was before my transplant.
I gave a seminar about my heart transplant to the UW-La Crosse pre-med club last Monday, and there were about 100 people there. I was happy to see such a big crowd and even happier when almost all the students raised their hands when I asked who had already signed up to be an organ donor on their drivers' licenses. I will probably give the talk again in some other venues. I still know nothing about where or whom my new heart came from.
School is going well. We are 10 weeks through the semester now, with just 4 weeks to go. Then we have about 5 weeks off until the spring semester. I am looking forward to a little vacation.
After temperatures in the 70's early this week, of course it's relatively cold here now, so I don't get out as much as I would like. We're getting 2-4 inches of snow today. I am not ready for winter. Of course mushroom season is done here until April. Oh well. Maybe I'll get a collecting trip to a warmer spot some time before then.
So this is a pretty boring update. I like it that way. I hope all is well with you and that you have a Happy Thanksgiving.
P.S. You get extra credit if you know which band performed "Saved by ZERO" in the 1980's...
December 20, 2006. The heart of Christmas
Hi Everyone. It's hard to believe it's been almost 7 months since my heart transplant. I'm doing very well. My last biopsy of the year was today, and I scored another zero, which means there is no evidence for rejection of my new heart. This is, of course, great news, since we reduced my dose of prednisone and cyclosporine, two of my main immunosuppressive drugs. This means that my body is accepting my new heart. All of my other blood tests, EKG and x-rays and all that were normal and "boring." Boring is good. I may not have to go for another biopsy until May, but that depends on how I am doing.
Classes are done here (We made it through the whole semester!), and grades are turned in. So I'm headed to Columbus Ohio (round on the ends and high in cholesterol...) to visit my sister Rosanne (and Jack) for a week. I'm sure it will be much better than two years ago when the airline lost my luggage, Rosanne and Jack had a power failure at their house due to an ice storm, and we had microwave sandwiches in a hotel room for Christmas Eve dinner. Everything (and anything) will be an improvement over that, although it does make us more grateful about everything we get. Classes start up again Jan. 23, and I am ready sleep in every day from now until then.
December 24, 2006. Leavin' on a jet plane
OK so it seems like a really silly thing, but I was very excited to go through the metal detector at the airport yesterday. In fact, I almost cried a little bit. Ever since I had my defibrillator/pacemaker installed in May 2002, I have had to be hand screened going through airport security. The agents couldn't even use that screening wand because it could potentially have set my defibrillator off, so I had to get a pat-down every time. Since La Crosse (LSE) is a pretty small (but incredibly convenient) airport with only two gates, all of the TSA screeners at the La Crosse airport know me from my frequent trips out to forays and lectures. Since I had not flown since last January, the TSA screeners asked where I had been, and they already had the little side gate half open for me to come around the metal detector for hand screening. However, I didn't need to go around! When I had my heart transplant the surgeons also took out my defibrillator, since I don't need it anymore. The TSA folks made a big fuss about me when I told them all about my transplant. It was really very touching.
I'm grateful to everyone who has made the past year a really good one for me. Thanks to everyone for your support and help over the last 7 months (and before). I'm doing very well, and I hope everything is going well for you. Merry Christmas and have a great 2007!
May 22, 2007. Year of the heart
It's hard to believe that today May 22 is the one year anniversary of my heart transplant. I'm doing very well, and getting around so much better than a year ago. Anne Galbraith and my other friends in Biology and Microbiology and Chemistry had a little surprise party for me today with a sugar-free heart-shaped cake. I was very surprised-I really had no idea it was coming. They gave me a nice card that sang "I will survive." It was very nice to be remembered.
This seemed like a very long semester. I was teaching a new class (Organismal Biology) and revamping some older ones. I had a total of five classes (Organismal Biology, Medical Mycology, Food & Industrial Mycology, Latin & Greek for Scientists, and graduate Seminar), which turned out to be way too much. I did get to travel some. I visited my good friend John Rippon in Florida for Spring Break in March and the next week I missed four days of classes giving an invited presentation at the Fungal Genetics meeting in Asilomar, California. It was rough spending those four days at a conference center right on the beach near Monterey. However that seemed to put me even farther behind, and I fell behind on the Fungus of the Month for the first time. I'll get caught up now though. Now classes are over and I have 3.5 months to get caught up on research and writing and everything else. It will be much better than spending the summer in Rochester. I've already been out in the woods mushroom hunting several times, although the morels were not so good this year.
Thanks to everyone for your support over the last year and previously. I had a biopsy in late March (I got a ZERO), and I go for another biopsy and my one-year battery of tests in about a month. I stopped prednisone in March, and I am gradually transitioning off cyclosporine to a different immunosuppressive drug, Sirolimus, which is supposed to be easier on my kidneys in the long term. The only disappointing thing is that Sirolimus comes from a bacterium Streptomyces, not a fungus like cyclosporine. :) Everything is going great.
July 17, 2007. The heart of the summer
It's been a lazy summer so far. I had another heart biopsy on June 11, which was the tenth anniversary of my diagnosis with Hodgkin's disease. Before the biopsy I was not sure if that coincidence was good luck or bad luck, but then I realized it's bad luck to be superstitious...
Anyway I got a 1A on my biopsy, which means minimal rejection. They don't even treat it any differently than a zero. The nurse told me that the doctors don't mind seeing a 1 because it means I'm not being over-medicated. So I'll take that as good.
Things are going ok here, but now the whole immune-compromised thing is starting to get to me. After being infection free for more than a year, I started getting a transient low grade fever. The doctors have been unsure what's causing it (but we know it's not rejection!). While mushroom hunting this spring I managed to walk on more uneven land than usual and my scar from my necrotizing fasciitis opened up a little bit. I managed to get a superficial Fusarium infection, and I'm now on voriconazole, an antifungal drug. It's only been a couple days so I'm not sure how it's working yet. But no bad side effects so far, which is good.
Summer is more than half over and now the traveling begins. A former grad student's wedding, the mycology meeting, family reunion, and the NAMA foray are all on the agendum. It should be fun.
So it's been a while since I wrote. I have been behind on everything, but I'm kind of getting caught up here at the end of the semester. I am back on my travel schedule. Since July I have been to
I had a heart biopsy on November 16, and scored another 0 (zero), meaning there was no rejection. Yay! I also got a picture of my biopsy, shown to the right. You can see my ribs, with my sternum tied together with metal "twisties." You can also see the biopsy catheter that had been inserted into my jugular vein and threaded though my right atrium, though the valve and into my right ventricle, ready to snip out a little piece of my heart. It's pretty cool to watch.
I have gone back to taking cyclosporine because of a continuing problem with an open wound on my right foot. It has started healing much better, so maybe when that heals I can go back on the Sirolimus. I don't think my eyesight is as good when I'm on cyclosporine. It's sort of weird.
This Thanksgiving I am thankful for my relatively good health. I hope everyone is doing well.
Thanks to everyone for your help and emails and cards and morel support. This whole thing has been really amazing, and I still can't believe how fortunate I am.
Well it's been more than a year since I updates this thing. They say no news is good news, and that is certainly true in my case. there has been nothing eventful to write about in terms of my health. I have been able to travel quite a bit.
If you want to read about my "exciting" time with necrotizing fasciitis (flesh eating bacteria) in my foot in 2005, click here