JoAnna and Forest
JoAnna was featured in a "Women, Heart, and Cardiovascular Disease" story in the Florida magazine section of the Orlando Sentinel, January 3, 1999, the anniversary of JoAnna's aortic dissection. Unfortunately, the article is no longer available online.
Bubble-like Burst In My Chest
26 March 1998
My name is JoAnna Griffin. I am a 27 year old female who had previously been very active running 5 miles at least 5 days a week. On January 3, 1998, I was staying at my parent's house for the holidays. My mother had just left to go run errands and I was just waking up and making some coffee when I suddenly felt a bubble like burst in my chest. Immediately my left leg started to go numb. My mom had a cell phone and I called her and told her I did not know what, but something was wrong with my heart. I did not think to call 911, because I had never had any problems with my heart before and I did not want to over-react (If only I had known how serious it was!). My mom came home within ten minutes and helped me off the floor as I had collapsed from the pain in my left leg-it felt like it was on fire. She rushed me to the nearest hospital where there was no parking so she just stopped in the middle of the parking lot, blocking a man who was behind her. Well as my mom got out of the car to go look for a wheel chair to help me get into the emergency room (My left leg was completely without feeling and my right leg was starting to go numb as well), the man my mom had blocked got out of the car to see if he could help. He just happened to be Dr. Karunaratne, a well-renowned cardiologist. He stayed with me while my mom went and got the wheel chair, asking me questions about what I was feeling.
I finally got into an examining room where they were thinking blood clot, because I had just had some varicose veins removed from my left leg a couple months before, so they called in a vascular surgeon to look at my leg and try to pinpoint where the clot was. They were getting ready to operate and go searching for the blood clot when Dr. Karutaratne (Dr. K) insisted that they do an echocardiogram which showed an aortic dissection. I was then airlifted to a different hospital since no surgeon was at this hospital to do open heart surgery.
At Florida Hospital South they did a CAT Scan which showed an acute type A dissection. I was then taken to surgery where Dr. Stowe did an emergency resection and graft replacement of the ascending and entire transverse aortic arch using 16mm hemashield in the transverse arch and 22mm hemashield graft in the ascending aorta using the elephant trunk technique, and then re-suspended my aortic valve. Then the vascular surgeon did a fem/fem bypass to restore circulation to my left leg and a fasciotomy to release the pressure in my left calf. (I had compartment syndrome). My left leg had been without circulation for 10 hrs so they did not know if this would save my leg or if I would lose it. I ended up keeping my leg and about two weeks later had an Umbrella Filter put in my chest to protect me from future blood clots. I had my lungs drained twice during the 4 weeks I was in the hospital and my heart drained once. My last operation before I left the hospital was to have a skin graft from my bottom put on my fasciotomy sites on my calf. About 5 days later I left the hospital to stay with my parents and have the care of a home nurse daily to change my dressings on my leg. I started physical therapy at home also to get my left leg moving again. I did not have any feeling below my left knee at this time and was having trouble with foot-drop.
It has been about two months since I've been home from the hospital, and I have a little bit of feeling in my left leg, but not much. I can feel pressure on my ankle and foot but I still trip over my toes when I don't have on my ankle-brace and shoe, and I still have to wear a brace to bed to protect my foot from getting foot-drop. The Dr's are hoping most of my feeling will come back and since some of it already has it looks like I probably will. In the meantime I'm going to physical therapy three times a week to strengthen my left leg and ankle and work on my physical endurance.
As far as my heart goes I have trouble sleeping at night due to the "swooshing" sound that the blood makes pumping through my dacron tube. I tire easy and worry that every pain or twinge in my chest is another aneurysm. When Dr. Stowe operated on me he took a tissue sample of my heart and it came back showing I had a connective tissue disorder. He is almost positive it's not Marfan's Syndrome because I do not physically fit the criteria of the disease and I've had the eye-exam that tests for it (since I am near-sighted and that is one of the characteristics of the disease) and it came back negative.
I am interested in conversing with anyone that has had a similar experience especially younger people as it is so rare in younger people like myself. Also if anyone has any insight on what kinds of connective-tissue diseases there are, I'd appreciate it if you'd E-mail me.
I realize how close to death I came, and know I am very lucky to have blocked Dr. K in the parking lot. Ia probably would not be here right now if I had called 911 because they would have been searching for the wrong thing. Now that I am one of the "Survivors of an aneurysm", I'd like to talk with others about how they deal with life-style changes and just the anger they feel about what has happened to them. I thank God that I am alive, but I'm also very angry about what has happened to me.
Update 7 Dec 98
I have had to have the top of my middle left toe amputated due to osteomyletis, which setback my progress in physical therapy to the degree that I am going to have to have heel cord extension surgery in order to get back enough movement in my achilles' tendon to walk normally. This will take place in May. This will require my foot to be immobilized in a cast for 6 weeks, elevated, and complete bed-rest for me, unfortunately. It really is a wonder that I don't weigh 400 lbs. by now.
Something positive that has happened to me as a result of my dissection is having found the person I hope to marry in the next couple of years. His name is Joe and he had an aortic dissection on January 25, three weeks after mine. He found our site and wrote to me, as he was experiencing many of the same feelings - anger and frustration. We started to write daily through E-mails and then started talking on the phone almost daily. We finally met August 4. He lives in New York and since I live in Florida we are racking up the frequent flier miles.
Update 3 May 1999
Unfortunately I contracted osteomyletis in my second toe on my left foot. Now I have 3 full toes and 2 half toes, and I am "toe-tally" ticked off about it. I had surgery to amputate the tip of the toe on April 26, and am going to have my heel cord extension surgery and my "hammer-toes" and "claw-toes" corrected at the same time during the second week of May. I am having this all done at the Hospital of Joint Diseases in New York City by Dr. Sheskier. I am hoping this will be the end of my foot problems.
Now an update on what caused me to have an aortic dissection. When a plastic surgeon was making my fasciotomy sites more attractive during surgery, he removed some skin that I then had sent to Cornell University in New York to Dr. Davis who is head of the genetics department. She sent it to be studied and it came back showing that I did not have Marfan Syndrome or Enlher-Danlos Syndrome. She said that there are so many connective tisssue disorders that it can't be said for sure weather I have one of the many others. It did show that I didn't have any of the common ones, which she did not tell me besides the aformentioned ones.
Dr. Davis wants to include me in a study that will hopefully be taking place in the next year, if they can get the funding required.The study will attempt to find some answers to why some people have aortic dissections with no history of it in the family, no trauma to the chest that might induce it, or detectable connective tissue disease.
That's it for now. I will write and let you know if and when the study will be done. I will keep everyone posted about my heel cord extension surgery and how physical therapy is going.
Update 10 Jun 1999
My heel cord release surgery was a success. It is so strange to have my ankle at a 90 degree angle. I can actually walk without looking like I am a lopsided ballet dancer. Dr. S, the orthopedic surgeon who did my surgery, is wonderful. He is very eccentric, but I think that has to do with his genius. He is very funny and makes me laugh, two very rare traits in a doctors, I have come to find out. He met his girlfriend on the internet too. Everyone that hears me and Joe's story is amazed, especially when we accompany each other to doctors visits. I have come to find out that having a scar in my cleavage is very embarassing as everyone stares at my scar and it naturally leads their eyes to my chest. Joe does not like this one bit, but I think it's funny.
Next week we are going to see a cardiologist that specializes in women with heart problems that want to get pregnant. I have also been in contact with a high risk pregancy doctor who is going to do some "footwork" for me, free of charge, to see what he can find out about pregnancy in a woman who has already had an aortic dissection repaired. I know that my surgeon and cardiologist in Florida said that it would not be wise for me to carry a baby, but that is easy for them to say, they are not a young woman who wants to have and carry a baby more than anything in the world. I know, people say, what if the baby has heart problems, or a connective tissue disease. To them I say, with genetic research growing as fast it is today it would be selfish not to bring a child into the world because It "might" not be perfect. My genetic testing that I have had done so far has been negative for connective tissue disease that they can test for. I am hoping that the high-risk pregnancy doctor finds some positive information. Anybody know of any stories, or experiences of women who have decided to carry a baby despite their aortic dissections? Or are their none at all?
I just wanted to update my narrative and let everyone know my surgery was very successful and I will start physical therapy in a week and a half and hope to be walking soon without crutches. I will update again in a month or so. Until then...
Update 22 Jul 1999
It has been about two and a half months since my heel cord surgery and my left foot continues to get stronger each day. I was actually able to walk down the aisle as maid of honor at my friend's wedding, with a tennis shoe on none-the-less, but no one really noticed. We were able to hide my left tennis shoe under my friend's wedding dress during the picture taking sessions since she had on one of those hoop skirt type dresses.
I can't tell you how good it is to be able to walk unaided, completely normal (well I have a slight limp, but physical therapy will take care of that). I have started to exercise again, not running yet but bicycling with Joe an hour a day, and I actually went dancing last night! I can't dance well, but most people who dance at clubs look like they have peripheral nerve damage anyway, so I fit right in. Speaking of peripheral nerve damage, it looks like I have gotten all of the feeling back I am going to get in my left leg. I have complete feeling back down to my ankle and then it gets spotty. I can't really feel my big toe at all or the entire right side of my foot, but I can feel the left side almost completely. The only problem is that I can't really feel parts of the bottom of my foot so that might pose future problems with contracture and boo-boos and such, Oh My! I have a brace I wear at night to protect me from contracture(which is when your foot "drops" down affecting dorsi-flexion(sp?), which is what caused me so many problems to begin with in my foot. I will have to wear the brace for the rest of my life, although I plan to take a break and not wear it on my honey moon. I also have a small ankle brace that I wear during the day that protects my ankle. I made a big mistake when I tried to go bicycle riding the first time without it, and naturally came to a stop on the bike on my left leg, which was not strong enough to hold me, resulting in a couple of potentially injurious falls.I also finally broke down and got a helmet, something I would never wear before my dissection. After my dissection I realized how vulnerable I am, and that I don't want to die needlessly after all I have been through.
As far as the connective tissue situation goes, no news yet on the study. So I am still in limbo as to what caused my dissection. I have to come to the realization that I might never know.
After a visit to Dr. Davis, my geneticist, to discuss my connective tissue analysis results, Joe and I asked her about pregnancy. She said there are a few cases of women who have had aortic dissections and then given birth, but they were all Marfan syndrome women. She recommended a cardiologist who specializes in high risk pregnancies, who we have not yet seen. She emphasized that my getting pregnant and all of the genetic tests available to us would be very expensive and not covered by insurance. This does not deter our determination, in a year, after I finish school and Joe and I are married, we are going to get pregnant!
Update 26 Jan 2000
I started the new year with a bang ... in the hospital for a week with a ruptured appendix. My lower small intestine became infected and before they diagnosed this they had me eating again, and the food wasn't going through so my stomach began to expand. After a couple of days and another catscan, they figured out that, no, I wasn't pregnant by divine intervention, that the food wasn't going through. Anyway, I am home now and due to start my senior teaching in the first grade on January 31, three weeks late, but still in time to graduate in May 2000.
The reason why I am sharing my recent appendicitis nightmare is because I had a bleeding problem, a severe hematoma directly under my left breast that bled so much it caused severe bleeding and swelling of my left stomach's side. It seems that whenever I have a surgery, some sort of bleeding problem or complication occurs. I was wondering if anyone had similar experiences, and if this could be related to my aortic dissection, or even have caused my aortic dissection?
Another thing that I am concerned about is the way DR's view me... I was called a "vascular nightmare" several times by the general surgeon who removed my appendix. He scared me by calling in Dr. Stowe, who performed the surgery to repair my aorta, to compare the catscan with the last catscan Dr. Stowe had done to check for developing aneurysms because he thought it looked "dangerous." It turns out nothing had changed with the dissection ... it still was dissected the same distance into my abdomen. I was just wondering if anyone else had DR's that freaked out because of their aortas and did all sorts of unnecessary tests in reaction to their medical history. Now I feel like I have been labeled a "Dangerous Vascular Nightmare Woman"
Speaking of my aorta, Dr. Stowe has told me that he strongly discourages my getting pregnant, but that if I insist, that I should get pregnant soon while my aorta is relatively "normal." He says that with age my aortic tissue will get weaker and the longer I wait the more dangerous it will be for me. So, hopefully I will be married by June and pregnant by July, or vice versa... JK. Any insight regarding the questions posed would be greatly appreciated.. experiences you have had or information you have found out.... anything.
Update 4 Jun 2000
I had another infection in my left leg that landed me in the hospital for two weeks on IV antibiotics(They had to keep on switching them as I have become immuine to most of them.. scary), but they finally go it under control and I didn't lose any more body parts, so I guess I am okay.
I must admit I am getting discouraged though and a little depressed. IT seems everytime I get close to graduating, something, or some new complication from my disssection rears it's ugly head and scares it from my reach. The University of Central Florida has been more than wonderul in working with me to try to get me to dam graduate, but something always happens. This term it started with the appendicitis that put me behind three weeks form the start, and then when I developed cellulitis in my left calf, it was just too much too make up, and there weren't enough days left in the school year for me to come in and finish my senior teaching.
I had a wonderful group of first graders. I loved them and it broke my heart to have to stop one day all of a suuden. IT really happened all the sudden too. I was in fornt of 21 first graders and suddenly I started to get a severe pain in my left groin area. It hurt very bad to walk, and almost immediately, a red dot strted to spread over the front of my left calf. I had to sit down, it hurt so bad. I was so scared becuase i was thinking it was a blood clot, and it would surely, with my luck, travel to my brain, right before all of these innocent children and burst!(I have a tendency to get over-dramatic in my thinking) I called my vascular surgeon from the room when the children went to recess, by this time crying,and told the nurse what my symptoms where. She told me I needed to get in there as soon as I could to have a an ultrasound thingy done. The kids came back in from recess and saw my eyes were red, and concerned, as they had never seen me cry and where used to me always laughing and being sily, asked me what was wrong. BIG MISTAKE, becuase UH OH: The tears just started to roll and I just could not stop them for the life of me. I was trying so hard to stop, but the more I tried the harder I cried. So finally, I just told them that my left leg, the one that i had had all of the surgery on,(they knew all about my my open-heart surgery and my leg surgeries, since, kids, God-love 'em are always honest when they wanna know why you have a scar, they ask "What is that thing?" and leave you with a warm -fuzzy feeling, just being so innocent in their inquiry) was hurting very badly, and I was not sure why, and I was worried. They took this information, processed it and responded by rummaging through their book bags and desks for pieces of who-knows-what, but gifts from their hearts, to give to me.
My mom came to pick me up as I could not drive and my leg was now swelling, hot to the touch, and the redness was spreading up my left to my thigh. As I got in the car, marbles, pencils, and pieces of string spilled onto the seat next to me. My mom asked what on earth were these things? Me, knowing in my heart that I had taught these wonderul first graders for the last time, started to cry again. And she knew, so we drove in silence to the Dr. The physician's assistant did an ultrasound and it showed reduced circulation to the left leg, even more so than normal.I was sent home to wait for a call from the Dr. as he was in surgery and was to review the test results and advise from there. While waiting, I started to feel light headed and sweaty, yet cold. My mom took my temerature which was 102.6,so we called the nurse at the Dr. and she said it was probably from the infection in my leg. I don't know, but I was happy that it was an infection, and not a blood clot, figuring it was the lesser of two evils. She then told me to go to the hospital, that they would be expecting me and that the Dr. would come in and see me and evaluate me after his surgery that he was performing there.
My entire left leg was bright red, very hot to the touch and swelling, five hours after we had been admitted into the hospital. We still hadn't seen my Dr. and so I still was not on any kind of antibiotic. My fever was the same. . .102.6, holding steady. By this time I was wondering if maybe I had a blood clot, at least I would be taken care of, but then in he walked(My vascular Dr.)and barked, "Cellulitis, start her on such and such antibiotic, right away, and put a call in to her infectious disease Dr" The first two antibiotics didn't work and my leg was getting worse, at which point I was finally seen by my infectious disease Dr. who changed the antibiotic to good old penicillin, which finally did the trick. Within three days my leg was almost back to normal, and within one week I was sent home with my old friend, Antibiotic Annie Fanny Pack.
Oh, guess what? When they did the appendectomy and did the test after it to make sure my dissection hadn't ruptured (they found it was a rectus sheath hematoma that caused me so much pain and bleeding) they discovered I have gallstones. Isn't that just great news! LOL I am 29 years old, for crying out loud, and my body is behaving like an old woman!! Anyway, it is strongly recommended that I have my gallbladder removed pretty soon, as with my luck, it will start to act up as I start a new job teaching, if I ever graduate, that is.
I can see it now, I have graduated, I have just landed a teaching job, on my first day of class, I double over in front of my students. This is a scenario I definately can prevent from happening and plan on having it removed this summer. Some more toe surgery also lies ahead for me this summer, no , don't worry, no more toe-trimming, just some possible toe fusing and pins, and other fun stuff.
I really do not know how people that have severe illnesses stay so strong. I don't know how much longer I can keep laughing. But I am afraid if I stop I will start crying and not be able to stop. I am so confused about things.. having a baby. I am feeling sorry for myself.. going through the it's not fair stage again, not knowing whether to believe in God . I swear (sorry), I don't know what to think. I need to have faith in something, to beleive in something, but I can't seem to believe in God. I am still so very angry.
I will post again after my Summer Surgeries, sounds like a resort or something, doesn't it? If only it was. . . I will write again, though, when I do, I promise I will have a better attitude. I could use some support though, if anyone is giving any away.
Update 17 Jul 2000
I have had the two surgeries I had planned for: the foot surgery and the gallbladder removal surgery. Both went without incident (Believe it or not).
I went to see Dr. Roman, the NY Cornell cardiologist whose specialty is women who want to get pregnant that have connective tissue disease. My blood-pressure was high, like it always is when I am at the Dr.s office (150-180/50-90). I told her that I had "White Coat Hypertension", that at home it ran from 110-130/45-65, but she wanted to have an MRA done to make sure blood wasn't being restricted from my kidneys, thus causing renal hypertension, which she would want to have surgically corrected by going ahead and replacing the rest of my descending aorta, prior to me becoming pregnant. She also ordered an echocardiogram to check the aortic arch, which she noted had never been looked at in previous Echos, or MRIs. I had never had an MRA. The results of both were very interesting. They also made me very angry at my Dr.s in Florida. In NY they found my Fem/fem bypass to be occluded and not even doing anything, they also found a false lumen to be pressing against my left femoral artery, greatly hindering circulation to my left leg( I could even see the difference in circulation on the monitor that the MRA Dr. showed me; I also could see the occluded fem/fem bypass). The MRA Dr. said that this was the reason I kept on getting infections in my left leg the past two years. He said it was a wonder that my leg was getting any circulation at all, but that somehow it was getting enough
The Echo showed that on one side of my aorta's graft that the blood is building up, becoming very turbulent and then letting go, like a dam, and whooshing through to the other side. My cardiologist in Great Neck said that my blood pressure in my arm might be 130, but in my heart it was 190, because of this effect. He said that in the next few years this wouldn't harm me, but in the long run.. the next 20 years, that it could cause heart failure. And since I am hoping to live another 20 years, that something would have to be done. This cardiologist needs to see my MRA before he can tell me any more.
The entire two years I was in Florida after my dissection, my vascular surgeon never thought that maybe my fem/fem bypass should be looked at more closely rather than just listened to through a stethoscope. If he had, I might still have all five toes on my left foot, never had to have had heel cord extension surgery, and never have had to go through the major depression I went through as a result of constant infections, surgeries, and not being able to walk!! I am, needless to Dr. in Florida, and this way she found that my fem/fem bypass was occluded, another block, while also finding that my kidneys WERE getting the efficient blood flow to them.
What has made me so frustrated about most of the Dr's I have seen in Florida, is that they don't want to treat you as a whole... they don't seem to realize that my left leg is connected to my torso.. and so on and so forth. I know that a Dr. should not be expected to treat everything on a woman such as myself who has so many screwed up body parts, but it would seem that when, for instance I went to my vascular surgeon when I had cellulitis in my left leg and was hospitalized for a week and a half that, upon hearing reduced circulation to my left leg, they would have done an MRA to check, not just turn me over to my infectious disease Dr.. My vascular surgeon charged me $3000, (Well my INS.. Co.) to come and peep in on me every day for two minutes after he had handed me over to my infectious disease Dr.!
Well that is it for now, I will update again when I find out what the next steps will be for me, surgical-wise.. hopefully I will have some good news. If I look on the positive side of all of this as far as my leg is concerned, at least I know that my infections were happening for a reason that can be fixed..that I don't have to live a life of constant surgeries and hospitalizations as a result of infections. Who knows, if this hadn't been found out, I might have eventually lost my left leg entirely, one toe at a time, then my foot, then my ankle, then my calf, then my knee, and then my whole entire leg, without my vascular surgeon ever thinking that these constant infections just MIGHT have something to do with an occluded femoral femoral bypass! I also know that the reason I was so tired after and during biking, or walking, is because of my reduced circulation, not because I am weak.
I knew there was a reason I met Joe. Just kidding, but I sure am glad he lives in New York, one of the best places to live if you have a defective body like mine.
Update 23 Jul 2000
I am happy, yet scared. The vascular surgeon says it is necessary for me to have an aortic femoral bypass. He says the reason I have been getting so many infections and am so easily fatigued in my left leg is because I am only getting 50% of the blood that my right leg is getting. He found this after doing a Doppler study thing. The reason I am happy is that now I know I will not live a life constantly fearing what body part is in danger of eviction. He says that this is the main reason I need to have it done. The fact that I had already had two tiptoes removed kind of makes him want to do it as soon as possible... as soon as they can schedule me after my pins come out of my toes. SO it looks like I am going back under the aortic guillotine August 1, or somewhere around there. The reason I am scared is that he said that mortality is 3-5%. He did say that the medical field was accustomed to doing this kind of surgery in 59-70 year olds so my body would only have approximately 1/2 of a per cent chance of dying. But my thinking goes along the lines of...if something can go wrong it will, and we both know how lucky I am in hitting jackpots in the world of medical percentages.
So... I was wondering if maybe some of the family could send me a card in the hospital. I am going to be in there for a week and a half. It is supposed to be a serious and painful operation... nothing like open heart surgery, but they are replacing the lower part of my aorta and the femoral and iliac in my left leg, and the femoral in my right, or something like that. Not the whole things... just enough to bypass those occlusions that are causing me problems. From how he described it, I will have a new piece of hardware that looks like a wishbone with the two wishes going off into each leg and the pointy top being my aorta. I feel funny asking for cards, but since I am very scared about it, and am going to need support from our family I thought I "IORTA" give it a try. I will have Joe send you my address in the hospital after I get my room. I do know the name of the hospital is North Shore University Hospital and the street address is 300 Community Dr. Manhasset, NY 11030
I don't know if it is written anywhere in Miss Manner's book of upstanding and proper behavior to ask for cards when you are going to have an operation, but I need some sympathy gosh darn it! All of my friends, and unfortunately a good bit of my extended family are so used to me having operations that they don't even think twice or blink when told that "JoAnna is in the hospital again". I know they care, it is just human nature, I guess to attach a constant with the person the constant is happening to and think of a big white hospital whenever my name is brought up. Thank you for considering my plea for cards, chocolate, and a new Porsche. Oh, and I am only kidding about the Porsche and chocolate, just in case any of you were thinking of actually... well anyway, thank you.
Update 10 Aug 2000
I am back home and thinking about getting a job with "Rand-McNally", since I am more than qualified, having a map on my chest, legs, and stomach. The cards were very much needed and very much appreciated.
Unfortunately, this surgery was more invasive and more major than my family or myself were prepared for. My mom flew up from Florida, so she was there through it, thank goodness. We were all mortified when I came out of the surgery. I had a Swan-Ganz Catheter (the reason I know the name of this will be revealed later), which is a catheter that they insert through your jugular and into your Pulmonary Artery to measure blood pressure, and measure heart rate. I also had an arterial line, which is a tube inserted into your wrist to take blood, and give medication.
I had an epidural line coming from my spine to administer Novocain and a mild narcotic.
I also had a stomach tube draining bile up through something that looked like a transparent hose. I lay all day, cross-eyed, watching vile bile travel down a hose that came out of my nose (or a "nose hose"). The bile was collected into a glass beaker looking thing. The whole contraption reminded me of a fish tank filter that had not been cleaned in a while.
Then of course I had the normal IV thing in the crook of my arm, which is the absolute worst place to have it, as your alarm goes off repeatedly whenever you bend your arm to interrupt the flow of the very important bloating fluid that they insist that you have regardless of how much water you drink.
Then I had the old dependable Foley's, or urine catheter (self-explanatory).
And last, but not least, there were the 57 staples, from the bottom of my old aortic dissection scar on my chest to the very top of my pubic region, and the reopened scar on my left groin area, which was stitched from the inside.
All of this made for a rude awakening for my family and me. It brought back bad memories from the aortic dissection repair. When I woke up in recovery, I freaked out. I was not expecting so much pain, so many tubes, and such a long and scary looking incision. It turns out; I was so concerned with the technical anatomical aspects of my surgery that I forgot to ask some of the most basic questions. By the time my mom and Joe saw me, I had been in shock, literally. I was white as a ghost, puffy, and bloated.
For the most part, I would say my stay was average, but there were a few things that really bothered me. The first was that I was sent to ICU for longer than I was supposed to be, since they did not have any beds on the vascular surgery floor, and I was repeatedly reminded of this every time I rang for the nurses, or wanted to speak to a Dr. I was told, "You are not even our responsibility, you should be on the sixth floor not in ICU", which left me feeling like, If I am not your responsibility, and I am not on the sixth floor, than who is taking care of me! That just fried my mind.
The second thing that got me very upset was the way the residents treated me on their daily rounds. This is a teaching hospital, so Dr. F's (my surgeon) residents did his rounds. They were very cold, and treated me like a corpse. The second day, when they took off my bandages, they came in at 7 in the morning, ripped my covers off, and ripped off my bandages without even telling me what they were doing or even giving me a chance to really open my eyes. No hello, no how are you feeling today? No nothing!
The third thing that bothered me was the way they acted when a mistake was made. . . again the not my fault, because you aren't my responsibility attitude. When it came time to take out my Swan-Ganz Catheter, in came two residents, who looked about 30 with their ages combined. One of the residents did not take the lock off and it started to hit the inside of my heart really fast and made my heart feel like it was fibrillating. I told him to stop that he was making my heart fibrillate (I meant to say it was causing arrhythmia, but I was freaking out so got the two confused) and he said it was normal and to not worry. I bit my lip as I listened to the alarm on the monitor go off and listened to my heartbeat go totally erratic. Then the head of surgery ran in with several nurses and asked what was going on that my monitor was all over the place. The resident replied "Oh, just taking out her Swan." The head surgeon first snapped "You should not be just bursting into the patients rooms and performing these kind of procedures without telling anyone." And then, after observing for a few seconds, "You forgot to unlock it!!" During all of this I was calling to my mom and to Joe who I could see out in the hallway looking in. Joe ran in and demanded to know what was going on. The head surgeon told him, very rudely to "GET out of here!!" The head surgeon then, without explaining anything to me started yanking at the swan and I felt the skin tear around my neck, and the nurse was saying, "You are yanking it right out!" The head surgeon than told the nurse to shut up. After a few more seconds I was telling him "You are yanking it right out!" He didn't say anything to me, but if he had told me to shut up I would have kicked this pompous, arrogant head surgeon in the you know what.
The Swan was out, but with a hole in my neck that had to be stitched up. Maybe it wasn't a hole, but I had no mirror in there, so it felt like a hole and it did have to be stitched. Through all of this the head surgeon kept on saying that it wasn't his responsibility, that I wasn't his responsibility, that I was in the wrong place, like I had requested to be in ICU for four days!
Now, after reading back over this, I would have to say my stay was less than average, and I cannot with good faith recommend this hospital to anyone. I am half joking, but seriously, who treats their patients like that? When a patient is fresh out of surgery, still hurting, and scared, they do not want to be told they are not the responsibility of those that they rely on solely for their care. I mean, DUH! Could they be any denser?
Anyway, I am home now, and recovering nicely, as I survived it. And as our family knows, if we survived aortic aneurysm/dissection repair, we can survive anything. . . even pompous arrogant surgeons and residents training to be pompous and arrogant surgeons.
Update 25 Jan 2001
Well, I have done it.. I have finally completed my senior internship. I finished December 16, 2000. I actually went the whole time without anything happening to me physically. No more foot ulcers, cellulitis in my leg - Nope! The aortobifemoral bypass was a complete success. I will be moving to NY in April and get a job teaching elementary school over the Summer, so by August 2001, I will be a New York school teacher. Let me tell you... I will be so happy to be answering all the children's questions about all of my scars. I will be able to say : "Those, old things? They happened a long time ago!"
I will still post on occasion, and let everyone know about my pregnancy plans. I am not pregnant yet, but we are trying. Oh, and I wanted to let everyone know that as far as I can find out, that Dr. Davis never had the study at Cornell, and I couldn't find out about any plans for a future one either.
Thank you, everybody, for all of the support the past few years. It looks like I am going to be okay, after all. I would like to believe that God had something to do with it, but I think it had more to do with finding a good NY Dr. who insisted on checking my whole body out.
Update 9 Feb 2001
I am so happy. Me and Joe are pregnant. I don't even have a high risk pregnancy Dr. yet. I better get busy, huh?
Update 21 Mar 2001
I thought I should write and let everyone know that I am just about through with my first trimester of pregnancy — so far so good. As soon as the pregnancy test came back officially positive at the Dr., Joe and I set out to find a high risk pregnancy doctor. After about four interviews, we finally settled on one that we both feel very confident about. His name is Dr. Bernasko, and he is a high risk pregnancy doctor with North Shore University Hospital. Joe and I are required to see him every other week, and the good part about being so high risk is that I get an ultrasound every visit, so I literally am watching the baby grow right before my eyes. Two weeks ago Joe and I heard the heartbeat, and I am happy to report that the it sounded very normal. No murmur, or skipped beats, just a very strong and regular Bu-bum, Bu-bum.
Joe and I also made an appointment with Dr. Mary Roman, a cardiologist at Cornell. She had me get an echocardiogram and wants me to get one every trimester to compare my aorta and make sure there is no change in it's size. She says that the main concern will be to keep my blood pressure below 120 and to make sure I do not develop any aorta changes.
Then we made an appointment with my cardiologist that I see on a regular basis, who is close to our home (it gets very expensive going to the city for doctors' appointments). Dr. Kuslansky ordered an MRA, without contrast, and wants me to have one during each trimester.
Next week I have an appointment with a genetic counselor at North Shore and the following week I am scheduled for a CVS, Chronic Villi Sampling, which is a genetic test they do in women who might have a baby with chromosomal abnormalities. I fit in this category because when I was 25, I lost a baby to Down's Syndrome.
I am so excited about the baby. After the CVS test I will know the sex of the baby and will let you all know. One thing that I have repeatedly heard is that I am the first woman that has had an aortic dissection repaired and tried to have a baby. Let me tell you, I feel so special.... I am kidding. I am scared sh*tless.
Another interesting development concerning one of my Florida doctors, the one who put in my Femoral/femoral bypass. It so happens that he knew for a year or so that my fem/fem bypass was occluded, but failed to mention this to me. Depriving me of this knowledge kept me from having the choice to do something to correct the occluded bypass. So for over a year, I suffered from depression, being unable to work or attend school, at least 5 hospitalizations for cellulitis in my left foot or leg, and even a short bout of addiction to painkillers.
The only reason I found out about his knowing was through the process of me transferring all of my records to NY. I think maybe I am owed some monetary compensation for pain and suffering? I have an appointment with a lawyer on Monday. That's it for now. I will let you all know how the genetic testing goes and whether it is a boy or a girl.
Update 11 Apr 2001
I have wonderful news. The Chorionic Villi Sampling came back negative for chromosomal abnormalities, and it is a boy! Maybe my luck has begun to change.. I was so happy when the nurse called me to tell me the news I started to cry and told her I loved her!! I haven't cried tears of joy for a long, long time. YEAH!!
Update 23 May 2001
I am feeling the baby move more and more. I am 5 months along, but look at least 7, as my stomach muscles are very lazy after all of the surgery. My blood pressure has been okay, but the readings in my arms are very different. 115/50 in my left and a range of 147/60-180/60 in my right. My cardiologist says this is normal with my graft. This is new for me...my blood pressure had always been lower in my right arm than in my left arm. I have researched it and the term coarctation of the aorta keeps pooping up.(oops.. popping -I had to leave that typo in for comic relief. ) I have been assured that this is normal and not to worry.
I have a rather sad update about Joe and myself. I have decided to stay in Florida and stop seeing Joe. The reasons are too personal to go into on this site, so I won't even try. My family is in Florida and they are there for me but it is hard on your own when you are so worried...there is no significant other to split the headache, pardon the pun, and I feel awfully scared and alone when I go to Dr.'s visits.
Tomorrow I have my second trimester MRI of the carotid, abdominal and chest aortas... it will take about three hours. Luckily I am going to get sedated first as I get claustrophobic. My mom will be driving me so I can get "nice and cozy" without having to worry about driving home. I have been assured that the sedation will not harm the baby, which is a good thing because I would never have been able to get through it "sober".
Keep sending positive thoughts my way, please... I hope to have a picture of the baby at the top of this narrative in about four months. The next four months are the most critical for me, physically, as during this time the body has to pump 30-50% more blood than normal. I hope my aorta, bless it's little heart, can handle it. I will update again next trimester, or if there are any developments.
Update 7 Jul 2001
Things are getting a little scary. My blood pressure refuses to be controlled. It has been fairly high, around 167/54 and I am now told that the systolic is what matters for me. At first I was told by my parentologist that it was the lower number we needed to worry about, and that was low, so I was doing fine. Then after Dr. apt.s to my cardiologist and cardiothrorcic surgeon they very enthusiastically cried foul, that it was the systolic, that it needed to be kept under 140 at the absolute highest and that 110-120 would be ideal.
My MRA went great, no changes. Upon arriving for my apt. at 3:30, I was told that that they didn't sedate after 2 as all of the IV nurses had gone home. I told them there was no way that I could be in the coffin type contraption for three hours so I would have to re-schedule. I was just about to leave when a technician came out to talk to me. She said that they had never done an MRA on a pregnant woman and if they were to do it they definitely would not give me any sedation or use contrast. My parentologist had even written a note saying that he recommend that I have sedation and contrast. She said that they could probably get the test down to 1 and a half hours if I wanted to try it, and I finally decided that yes, I might as well try. They said if I didn't mind waiting a FEW more minutes that I could use the new machine that wasn't as confining as the older ones. I said yes, that I would wait.
Two hours later I got called back.I was asked to disrobe, and put on the fashionable hospital gown that showcases your heine. Then I was lead through the busy hospital hallways and through a big swinging double door that lead outside. Yes, outside. You see, they were in the process of adding on a wing to the hospital, and didn't have enough room for the new machine so they were housing it in it's own trailer outside. As I walked up the stairs of the trailer, construction workers trying to take a peek at my showcased heinie, I started to wish I had just stuck with the old machine. Then the door opened and a beautiful nurse welcomed me inside.
The new MRA machine sparkled white and took up the end of the trailer. I thought, wow! This was worth the wait. Rose, the beautiful and kind nurse, asked me if they had put the conductor things on my chest. I said no, they hadn't. She looked dismayed and said "Are you sure they didn't put anything on your chest?!" I replied "No, all I have on my chest, are my breasts!" We both giggled over this nervous attempt to make light of an awkward situation. I laid down on the table and she attached all of the things to me that needed to be attached. She was sitting on a stool next to me, being all sympathetic upon hearing of my many surgeries and recording each and every one of them,when all of a sudden we both hear this "Flippppht". A metal something had flown by both of our faces at the speed of light and had been eaten by the MRA machine. Rose, exclaimed, "Oh my god! IT ate my paper clip! They warned us not to have metal objects in this room, but I didn't think it would be strong enough to take my paper clip off of my paper! Then we both looked at each other and laughed. We agreed that the magnetism in the machine was working quite well. She was very scared, I could tell, scared that she had ruined their multi-million dollar machine with a little paper clip. I told her I could crawl in and look for it, and she declined, saying that she would. I told her I would watch the door as she climbed up into the machine, and lo and behold found it!
Now, after another hour, I was finally ready to be cat-scanned. Immediately upon putting me in the machine, my pulse rate went up to 160bpm. I was very uncomfortable as I always start to think of the many times I was cat-scanned, back in 1998. I started to think about the time I was cat-scanned after they had taken skin of of my bottom to graft my calf and how they moved me onto the table and scraped my bottom as they did it. Tears began to well up in my eyes. Rose, pulled me out and said that my heart rate was going crazy and if there was anything she could do to make it easier. She then proceeded to turn me around so I would go in feet first instead of head first. She offered me a pair of funky glasses that when you put them on made you see behind you. They just made me dizzy so I finally opted for the old washcloth over the eyes trick. The whole thing was over in an hour and 15 minutes.
A couple weeks later I saw Dr. Stowe, who told me that I didn't need to have another MRA until after the pregnancy, as he felt they probably did more harm then good with how upset I became during them. He said an echo was sufficient and I should have one of those every six weeks. Forrest is growing normally and weighed 1.8 lbs at 24 weeks. I have updated in my online pregnancy journal about the different meds they are trying to get my blood pressure under control, so I won't repeat it here. If you want to see how my pregnancy is going and see new ultrasound pictures, which, yes, I know, are only adorable to the mother, please visit my journal. I am 25.1 weeks now. Almost through with the second trimester.
Update 1 Aug 2001
I had my echocardiogram that I have every 6 weeks last week. The technician (Eric) looked worried and concerned and took an extra long time examining my neck with the thingy. He said things like... "Hmmm, your carotid artery wasn't this wide last time", and "Did you dissect up into your neck when you dissected?" I said no, that the only thing I had heard about my neck was that I had a loud carotid bruit when the Dr. listened to the pulse in my neck with a stethoscope.
Monday I had my monitoring apt. with Dr. K and he discussed the results of the echo with me. I literally almost fainted when he told me that I had an extracranial dissection in my right carotid artery. My first questions were "Shouldn't I be in the hospital, aren't I bleeding to death as I speak?" He said no but scheduled me for another more thorough echo the next day, which was today. My parents both came with me and I came armed with a list of questions as I had researched carotid dissections all night. I had found two extremes in the results... one that had me dead by the age of 40 from a stroke, and the other that had me just being monitored and on medication as long as I had no symptoms, like tingling in one arm, or amorais fujax(sp?) which is when small blood clot break off and move across your eyes and cause you to see spots accompanied by a severe headache, or a straining feeling in my neck. I was worried as I had the second echo, but not too bad because I figured he would not have sent me home if I was going to die from it.
Here's the kicker: we don't know when it dissected. No one here in Florida had ever looked at my carotid arteries on a ct scan or echo. Eric just happened to look out of curiosity. Since we don't know how long it has been dissected (it dissects all the way up to my ear), we do not know if it happened with the pregnancy or if it happened four years ago when my aorta dissected and just healed itself like the other dissection that Dr. Stowe just happened to find when he repaired my dissection in 1998. My left carotid and subclavian arteries have dissected (found in NY), my whole aorta: the descending, ascending and the arch have all dissected; my God, I am going to dissect all together and then there will be two of me! I am getting very confused just writing this.
Dr. K says that I am to just go on as usual - just take it easy and I need to see Dr. Stowe, my cardiothoracic surgeon so he can evaluate the situation. Dr. K said that after I have the baby, I will have to go on some different medications that will keep me from being able to breastfeed. But that is not a big deal to me now... it once was, but that was before all of this happened with my carotid artery and my BP being out of control. I will be happy just to have a healthy, fully developed little boy able to breathe without a respirator.
I do have some good news, though- it's not all disaster and dissections! At my 24 weeks ultrasound, Forrest weighed 1.8 lbs. At my 28 weeks ultrasound last week he weighed in at 3.1 lbs. He nearly doubled in size.
Update 25 Aug 2001
Boy, do I feel as though I have been emotionally manipulated by my cardiologist. During my last visit to Dr. K, he answered my questions of "What does the carotid dissection mean for me and my life?" with "You are the one who decided to get pregnant even though I told you not to and left me with the burden of taking care of you now, so I don't know how to tell you to deal with the consequences." He made it sound like my carotid had dissected as a result of my pregnancy. He told me to make an apt. to see my cardiothoracic surgeon, Dr. Stowe to discuss it with him, which I did. To my surprise, Dr. Stowe told me that all Dr. K had to do was to look at my past MRIs and echos to see that both of my carotid arteries were dissected and had been since my initial dissection in 1998. He said he had no idea why Dr. K didn't compare the most recent ones with my initial ones before scaring me to death. I feel as though Dr. K is upset with me for getting pregnant against his wishes and is making me suffer for it. As much as I hate to, I am going to have to change cardiologists. Every time I have gone to see Dr. K in the past two months he has made me swear that I would have my tubes tied. He has yelled at me and made me cry lecturing me about this pregnancy and how he doesn't understand how I could risk everything with it. I talked to my perinatologist about it and I have decided not to get my tubes tied, as it is too final and I am not ready to make that decision even though I don't plan on having any more children the natural way, I do not think it is fair to be forced into making a decision like that. It is my body, darn it, and I will have my tubes tied when I am good and ready, and no sooner. Yes, I am a little angry. Dr. K. scared me to death with the "news" of a carotid dissection. I feel it was very unprofessional and downright mean to mislead me the way he did. I am very hurt and upset that I have to find a new cardiologist now.
On a more positive note, Forrest is doing absolutely wonderful. At my ultrasound two weeks ago, he weighed 4.2 lbs at thirty weeks. I am now 32.1 weeks and am having an amniocentesis in two weeks to measure Forrest's lung maturity. If his lungs are mature, he is coming out of there! If they aren't, we are going to wait another one or two weeks. I am doing more wonderful than anyone expected. My BP is under control now, and I have not had any signs or symptom of preeclampsia, or toxemia, so I do not have to go in the hospital until the day of the c-section.
And finally, some more good news: My parents bought a house two doors down from them for me to live in so I could be close and they could help me out with Forrest and my various health problems as they arise. It was just too scary for all of us for me to be thirty minutes away in case something happened.
I was wondering if anyone saw the special on CSNBC on Florida heart hospital on August 22, (my birthday). It featured my Dr., Dr. Stowe as one of the Dr.s being followed during surgery. I was almost going to be a featured patient on it, but since Forrest wasn't due until after it aired I guess I wasn't an exciting enough patient. It was hard to watch. They showed open heart surgery very graphically. It made my chest hurt to watch it.
I will update again as soon as I find out the date of the big day!
Update 18 Sep 2001
Forrest arrived by emergency c-section on Thursday, the 13th of September morning at 8:59 AM, weighing in at 5lbs 11 ozs.
Wednesday night, around 10:45PM I went to the bathroom and when I stood up blood was running down my leg.. I had been having slight cramps all night and had stayed in bed all day with a bad lower back ache. I had just seen my Perinatologist, Dr. Fuentes the day before and everything was fine... no bleeding or anything. Since I had not had any bleeding whatsoever throughout my entire pregnancy and all of the sudden I was bleeding badly I started to walk to the phone to call Dr. Fuentes. As I was walking a huge blood clot came out of me. So big that at first I though it was Forrest! I panicked and called my parents and then continued to call Dr. Fuentes. He told me to meet him at labor and delivery at Florida Hospital. He reassured me that everything was fine, that he had just seen me and that Forrest was doing fine. He was very reassuring, and I immediately calmed down, as I knew that getting over excited and freaking out wouldn't do Forrest or myself any good.
While my parents were getting ready to come over to pick me up to take me to the hospital I tried to get up to get my stuff together and blood just started pouring out of me. I got a big beach towel and made a makeshift diaper and pulled some of my pregnancy shorts over it. I looked so ridiculous - like an adult with a full diaper, but it worked. When I got to the hospital they checked Forrest and he was fine. They started to monitor me to see if I was having contractions.
Meanwhile I stopped bleeding almost as suddenly as I had started, though still bleeding slightly. I was having contractions but my cervix was not dilated. They decided to monitor me through the night and if I continued to contract and bleed, do a c-section. Morning came and I was still bleeding and contraction, so I had the c-section at 8:30AM. By 8:59AM Forrest was crying at the top of his lungs. It was the sweetest and most beautiful sound I had ever heard. A nurse videotaped the entire thing. It looked like it was very painful. Thank heaven for spinal epidurals. They did a vertical incision instead of a horizontal one because of all of my previous abdominal surgeries. Forrest came into the world with Dr. Fuentes singing Frank Sinatra's Fly Me to the Moon.
Forrest is doing great, though still in the special neonatal care unit at Florida Hospital because he is having trouble breathing regularly due to arriving at 35 weeks. He has had one dose of surfacant to coat his lungs and was taken off of the oxygen yesterday. He kept on pulling out the canula (the nose prong they stick up your nose to help you breathe), so they finally took it out and he has been breathing at 100%. As soon as he can feed from a bottle, starts gaining weight, and finishes 7 days of antibiotics, he comes home.
Forrest is absolutely the most handsome little boy I have ever seen. He has a face that has so much personality that it makes everyone smile to see him. We are not sure who he looks like yet, but my mother thinks he looks like his grandfather. He has light brown hair, surprisingly, and long, long legs, and big, big feet. And his second toe is longer than his big toe, just like his mommy. I am so in love with my little boy, that I can not even describe the emotion. I think it is a new emotion deserving of its own name, it is so strong a feeling. I would die for him many, many times if he needed me to.
I am so happy I followed my heart when all of the Dr.s kept on telling me I was crazy if I got pregnant. Now my heart has grown 100 sizes it is filled with so much love for my little boy. I am the happiest woman - it is everything I expected it to be and so much more.
Update 28 Feb 2002
Being a mom is very tiring for me and I have had a hard time adjusting physically. I am very thankful that I had Forrest though, as he is the most important thing in my life and always will be. I have been hospitalized once since I had him, about two weeks ago, for a suspected stroke, as I was slurring my words, and stumbling upon walking. After many many tests, and much, much money, my Drs. came to the conclusion that my Toprol dose was too high for my weight (now 133, and it was 218 when I had Forrest!). Dr. Fuentes had said I would need to have my meds adjusted because of this, but once again I had a hard time getting Dr. K to listen to me. He is very stubborn and insisted that I would not "Bottom out" which I ended up doing. My blood pressure was 84 /34 when I called Dr. K's office and the nurse noticed I was slurring my words and noted on my chart that I had a dissected right carotid artery and dissected left subclavian artery. She told me to immediately have someone drive me to the emergency room (which happened to be my new boyfriend, poor guy).
I lost the weight very rapidly, I suppose from the stress of taking care of Forrest, and worrying constantly that he was a gift too good to be true that would be taken from me. I was so tired one day after Forrest had been home for about three weeks that I fainted twice in the kitchen and also fell asleep while folding his clothes and putting them away in his dresser. Luckily my mom was there and realized that I needed some help and I was just too stubborn and felt too guilty to ask for it ( after all, it was me who insisted on having a baby - I should have to deal with it). So my parents hired a maid short term to come in once a week, and my mom started to watch Forrest for me occasionally and also spend the night twice a week to allow me to get some sleep. Forrest was very colicky during the first three months and would wake up every hour and a half, it would take an hour to feed him and another half hour to get him back to sleep so I was not getting any sleep. Just as I was getting ready to fall asleep I would be awakened by Forrest's piercing cries, and I tell you, that little guy has some lungs on him!!
Through all of this needless to say, the weight just dropped off of me, as I was suddenly active again almost twenty-four seven as opposed to strictly limited activity during my pregnancy with an unlimited appetite.
Everyone that is close to me says that I should get another Dr. (Cardio), but I feel so guilty as Dr. K saved my life. I know, I should not have to pay him back with my life, but I just feel so beholden to him for what he did for me.
I am going to at least get another opinion on my carotid artery and the fact that Dr. K says that I can not lift more than 25 pounds and that once Forrest passes this point I will not be able to carry him, yet he gave me no alternatives or ideas on what I was supposed to do. His attitude has been loving yet resentful towards me since I had Forrest and I feel as if he is grinding an ax to pay me back for the worry I caused him. Any woman who is reading this that has a solution to the weight lifting problem would have me gratitude for sharing it with me. I figure since the Irish are supposed to be lucky that maybe if I write like one, I will start to have only good things happen to me. ( that was really a typo.) I will write more about the trials and travails of JoAnna and Dr. K, but before Forrest wakes up from his nap, I wanted to share some news.
I hope everyone is doing well. My hair is falling out. (nice segue, JoAnna) You can't tell yet because I have so much, but it is a result of the too high a dose of the Toprol XL I was on. Hopefully it should slow down now. Does anyone have any experience with a betablocker that does not cause hair loss? I know it is "shallow" of me to be worried about my hair falling out, but I love my hair, and I did grow it myself. Uh-oh, Forrest calls, mommy must run!
Update: 15 Dec 2002
I know it has been quite a while since I have updated no news is good news. My leg and foot are doing great. I am excercising - walking up to two miles a day on my treadmill. I am trying to work up slowly to running again. It is going to take a while though as the betablocker makes me very tired. My hair is growing back as I have switched back to Corgard. No one could even tell I was losing it, but I knew from the clogged up shower drain and plugged up vacuum cleaner.
Forrest is a little tank. He is 32 lbs and very tall. He is 15 months now and walking and running around everywhere. His favorite word is kitty and his best friend is his siamese cat Jem, who I got when Forrest was just three months old. Jem acts like a dog and is very gentle with Forrest allowing him to "grab a hunk of kitty" and purring as he does. It really is adorable to watch them play together. Jem's sister, Scout, puts up with Forrest, but it is Jem who is Forrest's kitty.
I am not teaching yet, as I am still very busy with Forrest. I have been lucky in that my parents have been helping me to stay at home with my baby for the first couple of years. They realize that I risked my life for Forrest so they understand how important it is to me. I have some great parent's don't I? I am very thankful for them and the fact that I have a beautiful baby boy who is absolutely wonderful and as healthy as can be. I will update again when I can.
Update: 11 November 2004
Hi everyone. I realize it has been quite some time since I have updated my narrative. Almost two years. I feel as though I should start out by letting you know that my aorta and the rest of me show no signs of getting any worse after my pregnancy. I have known this for about ten months after I was admitted into the hospital for a severe headache that I was convinced was a blood clot from the carotid dissection. I ended up staying in the hospital for three days and getting every test I had put off for the past two years run on me. An MRI (or is it MRA, not sure now, what a nice change!) for my carotid, thoracic cavity, and abdomen. All of them came back with absolutely no change from before my pregnancy.
I came home from the hospital after learning a hard lesson. No matter how hard we try, we can't pretend like we will ever be the same again. I was trying to pretend like I was a normal 33 year old. I am normal, yes, but no, I will never be healthy in the traditional sense. This has been hard for me to accept having a little boy that I want to see grow up so badly. I know that I should think positive, and I am working on it. I have a hard time accepting that I just don't know what the hell caused my dissection except for the general diagnosis of connective tissue disease. This just is not good enough for my over-thinking and analyzing mind, or for my beautiful, smart, and funny 3 year old little boy. It is times like these that I say the serenity prayer over and over until I fall asleep. God, grant me the serenity to accept the things I cannot change, the courage to change the things that I can, and the wisdom to know the difference.
I know what you are thinking. What the heck is this woman praying to God when she doesn't even believe in him? I can't help it. There must be a God. What other explanation can there be for the miracle of a child? I just hear my little boy say "I love you Mommy," or listen to him singing the Spiderman theme song in the bathtub...Is he strong? Listen bud... He's got radoactif bud..... Or yell from his bedroom, which is halfway across the house "Mommy...You okay?", when I cough in the middle of the night when he has been fast asleep. And to think I had everyone except Forrest's daddy trying to persuade me not to have him. I wonder if they can tell by now that he has saved my life, brought me back to life, and restored my faith in God.
Enough of that fluff, now on to the other stuff!
I am teaching Kindergarten now. I started the year hired two weeks after it had started since they had an unexpected larger number of Kindergartners enrolling late. I was given twenty-four children; including, Hurricane Charley, Hurricane Ivan, and Hurricane Frances. And those are just children in my class...( I couldn't resist some hurricane humor).
I had a really rough start. Living in Orlando, Florida and having the first two months interrupted by three hurricanes and not more than 7 days straight school attendance without having to cancel school due to the hurricanes was a true test of strength and courage. Yes, it was scary! Our school was one of the shelters for each hurricane so we were really hit hard and close. A first year teacher who hadn't worked for 6 or 7 years all the sudden with twenty-four 5 year olds. A month or so into the year another teacher was hired to "team-teach" with me. Now we have thirty kids, but it is so much easier as she has taught kindergarten before. Now I love it, but I am still exhausted at the end of each day.
I also have been exercising a lot more. I take a spin-cycling class 2-3 times a week. This gives me the cardio workout without putting unnecessary stress on my left leg. My vascular surgeon tells me that with the reduced circulation I have in my legs, it's this exercising that enables me to continue to enjoy relatively pain free day to day activities, like teaching a bunch of Kindergartners and then coming home and chasing my little boy down the street on his bicycle or tossing him a football in the backyard.
The problem I continue to struggle with is not being able to find a beta blocker, or combo of blood pressure meds that will keep my systolic blood pressure consistently under 140 . I have no trouble with the diastolic which is always under 70 and usually under 60.
That's it for now. Forrest is three years old. He is in the 98% in height and the 65% in weight for his age group. He looks like a little linebacker. God must have known I would need a strong little football player to get me back in the game.
Discussion, comments, or questions: JoAnna Griffin
© Copyright 1998 JoAnna