Stand with Jim in His Health Battle with Marfan Syndrome

Hi, my name is Jim I'm 45 years old from St. Louis. I'm currently in the hospital waiting on an emergency surgery to repair a large abdominal anuerysm. I was just getting back to normal after recovering from another Anuerysm surgery in Oct. 2023. Then had another April 19th that seemed to fix the issue but right before discharge found out it didnt. So I'm still in the hospital currently. They are keeping me in the hospital to monitor me until they come up with a plan. Next surgery should be in a should be within the next few days (end of April/Early May)

I have Marfan Syndrome and my whole aorta has pretty much been reinforced/stented. Marfan is a connective tissue disorder where the body doesn't create enough fibrilin to strengthen various tissues. I've been through around a dozen procedures to address these anuerysms 5 of which were major open surgeries. My first open heart surgery was right before my Senior year of High School in 1995.

I've always struggled financially, but I'm not one to usually ask for help. This time I am asking for some help. My savings was wiped out while recovering from my surgery in Oct. I was able to go back to work around the New Year and stay caught up on bills but haven't been able to rebuild a nest egg. I'm not sure how long this surgery will keep me down, but I could use some help paying bills until I'm better. All donations will be used to help keep me current on bills until I'm up and going again. I may also raise the fundraising limit to help cover other debt and hospital bills. If this fundraiser goes above and beyond meeting my needs I will consider making other charitable donations to other individuals struggling with Marfan or the Marfan Foundation.

Please only donate if you are able to. If you are unable to donate you could still help by sharing my posts on Social Media or other means. Thanks for your help.

Below is a detailed history of all of my surgeries and a little bit more about myself.

My name is Jim. I'm 45yrs old from St. Louis Missouri. I've lived in St. Louis my whole life. I grew up in South City and attended St. Boniface Grade School and St. John the Baptist High Scool. Both of which are no longer operating. I didn't have the opportunity to go to college.

My Marfan story started with being diagnosed My 8th grade year of grade school when going for a physical to try out for baseball for the first time. I played soccer from 1st-8th grade and basketball in 5th grade. I loved playing sports and one of my dreams was to play professional sports(if I had my choice it would have been hockey). Once I was diagnosed those dreams of course were no more. Some of my other dreams were to fly fighter jets (but would have been OK with flying anything really), or become a police officer or firefighter. So all of my childhood dream became unattainable right before High School. I never was able to replace those dreams so I just did what I had to to get by.

I was average height in grade school and even shorter than some of the girls in my class. I ended up having a huge growth spurt between the beginning of my freshman year and beginning of junior year growing 9 inches in that span that put me at 6'5" (I am now 6'7"). I started having back pains during this time and have suffered from back pain ever since. I do have scoliosis which may be where the pains originated and now also suffer from dural ecstasia. I wonder how tall I would be without the scoliosis.

2 weeks before starting my senior year of High School I had surgery to Stent and graft the aortic root, fix a hole in my heart from birth, and repair the Aortic heart valve. This was the first of 3 surgeries so far through the sternum. I missed almost my whole first semester of Senior year. I recovered well but as anyone who's had any type of surgery knows it takes a while to get completely back to normal. These major surgeries (which I have had 5 now) can take up to a year a more to really get back to normal.

I was good to go for about 12 years after that when I had my next surgery in 2007 at age 28-29. This one is still my biggest single scar. It starts from behind the left shoulder and swoops down and and ends up close to the belly button. This I believe was to Stent the descending Aorta. This was probably the one that took the longest to recover from. I think they may have also had to temporarily remove a rib. I remember having pain off and on from that rib for maybe a couple of years and I could feel it shift around sometimes.

About 7 years later in 2014 I was having issues with constipation and when I laid on my stomach I could feel my pulse in my stomach. I was supposed to be going to a Family Reunion Annual Fishing Tournament camping trip the coming weekend. Instead I took a trip to the ER. They ran tests and found out I had a very large Abdominal Aortic Anuerysm and needed immediate surgery. The hospital I was at wasn't capable of doing it and they started searching for one in my insurance network that could. There were none, so I had to go out of network and get transferred to another hospital. This was a very extensive surgery that took 13 hours to complete. They had to run a bypass around that anuerysm using a vein from my thigh. This left a scar that continued where my first surgeries scar ended to about 4 inches below the belly button. I was released from the hospital about 2 weeks later. Less than 24 hours after I was discharged I ended up having a dissection of the Aorta back up in the Aortic root area. The area that was fixed during my first surgery. That was the absolute worst pain I have experienced in my life. I have a very high pain tolerance, I guess because of all the pain I had endured until that point. But this pain practically paralyzed me. I had to lay on the couch and and my whole body stiffened and I could barely get any words out because of a constant grunting trying to deal with the pain. The Ambulance came and were going to transfer me to the "nearest" hospital. That hospital was one of the ones in network for me that couldn't help me when I needed the surgery a couple weeks prior. I told the paramedics they couldn't do anything for me there and I had to go where I just came from. It was about the same distance away as they were going to take me anyway. But I was in the county at the time and where I needed to go was in the City limits. Because of the City/County divide they normally wouldn't take me to the city hospital but they agreed to do it anyway.

Early in 2015 they decided to go in through the sternum for the 2nd time because of another anuerysm that had formed near the dissection area. They may have somehow addressed the dissection as well but I don't have my own log of what all happened during this surgery. Then less than 6 months later at the end of 2015 they found a leak that was making the lower abdominal Aortic anuerysm bigger. This was a little bit more of a minor surgery with a scar about 5 inches just below the left side of my belly. They went in and sowed a felt like strap around where the leak was to tighten in back up.

Oct of 2023 I had the 3rd surgery through my sternum. This was to redo the "elephant trunk" which I believe is the aortic root area which may have included the site of the dissection and the other anuerysm that appeared shortly after the dissection. Also at this time they had to replace the Mitral Valve with an artificial carbon valve. I am now on blood thinners for the rest of my life. At this time I was told by nurses that it's extremely rare to have more than 1 surgery through the sternum because the usually put a mesh over the sternum after having a surgery and it makes it very difficult if not impossible to go back in. Luckily my Dr's were either thinking ahead when I had my first surgery and didn't do that because they wanted to be able to have accessibility in case of future problems or maybe that just wasn't common practice at the time of my first surgery. The nurse also informed me that the pain might be greater because of it being the 3rd surgery through the sternum. But really I didn't think it was any worse and actually probably less. But I've been through so many and so much worse pain that maybe it just didn't seem too bad for me. Before having this surgery I was having a few different ongoing symptoms. I would experience weird heart rhythms or flutters. They just kind of came and went. Also I had a pain between my shoulder blades which may have been caused by this. It's hard to tell because It's only been 6-7 months since that surgery and I still haven't fully recovered.

Mid March of 2024 I got sick with some sort of Respiratory Virus. I had a productive cough and was constantly blowing my nose with lots of mucus coming out. I tested negative for Covid, didn't have a fever or anything. But I also developed a really low back pain. Almost at the tailbone. It felt like pain in the bone rather than tissue. That's partly why I tested for Covid, because when I had Covid before it was accompanied by different body aches. I also started getting a pain in my right side. I thought it was a Gastrointestinal pain from eating lots of pistachios over a 3 day period. I had a similar pain a few years earlier after snacking on lots of trail mix over a few days. But that previous pain was much more extreme. I could barely lean forward (only a couple inches) or I was in lots of pain. I couldn't work like that and went to the hospital and was diagnosed with Crohns. Since this time the pain wasn't as bad as it was the previous time I decided to let it run its course. Then another pain started in my right testicle, just kind of a dull pain now and then. Over the course of 1 1/2 - 2 weeks the back pain was constant, the testicular pain was intermittent and the side pain started to migrate lower and just above the belly button. Then all the pains stopped for 1 - 1 1/2 weeks. So I thought I was in the clear. Then all three pains came back but the migrating pain seemed to shift over to the left side more and below the belly. After a couple more days of the pain being back I contacted my Cardiologist/Marfan Expert and my Primary Care Physician. I got a response from my PCP first. She wanted me to get a CT to see what was going on but said if she scheduled me for one it would be a month or 2 before they could get me in so she said to wait to hear from my Cardiologist to see what he had to say and that if he wanted me to get a CT he could probably get me in quicker because it would be more of a follow up from my surgery in Oct. Not long after I spoke with my PCP she called back asking more about my back pain. So I explained it a little more and she then suggested that I head in to the ER. I was already getting ready to head into work so I asked if I could put it off until the next day (I work evening hours and I was off the next day anyway). She said that should be OK. A little later my Cardiologist called me and I explained everything to him. He didn't seem super concerned at first because I was working through the pain but he did get a CT set up for the next day because of the weird back pain I was having (it was a different type of back pain than all my other normal back pain). So the next day I went in to the ER where they got me in for a CT. The CT showed that one of my already stented anueryms had gotten almost twice as big as it was after my surgery in Oct. It went from 6.3 to 11. I forget if it's measured in cm or mm. So they admitted me into the hospital right away and started to work on a plan to fix it. It took a couple days before they would do surgery. It was now mid April, about a month after first getting the 3 different symptoms causing pain. They decided to try a minor procedure where they puncture into an artery in the groin and run a balloon type sheath Stent to the area that is leaking back into the anuerysm. I've been through 4 or 5 of these procedures before trying to stop multiple leaks into this same anuerysm. Some of the leaks were plugged but over the years this anuerysm was still getting bigger so they knew there was more but couldn't find out where. Now that it had gotten so big they were able to see it. So they tried this procedure again. Initially it looked like it was successful, there was no visible evidence of a leak anymore. A few days later they were about to discharge me from the hospital, but wanted to do 1 more CT before leaving. That CT showed that the leak was active again but it was less of a leak. It has now been almost a week since then and I'm still in the hospital. They're still trying to figure out how to fix it. It is now a couple of days before the end of April. I will be having surgery sometime within the next few days but they're still trying to figure out the best way to go about. No matter what they do it will be a very complex surgery.

I've been through more than most people and I still have a pretty positive attitude. I hide a lot of the pain well. Most people probably don't realize I'm always hurting. I'm just trying to live life like everyone else. I'm never really nervous about these surgeries. I always trust that my Dr's will get me fixed up. I have had and continue to have some of the best surgeons working on me. It's also completely out of my control so maybe that's why I'm able to keep calm through it all. Thanks for reading my story and a Tremendous Thank You to all of the generous donors. You don't know how much this means to me.

I've also started a Facebook Group. I will update my progress there. There are also links to other pages, websites, etc to get more information about Marfan.

https://www.facebook.com/share/hF1j7m4KWopr6ovf/?mibextid=A7sQZp