My Summer

This was in the Provo hospital waiting to get
my blood clot removed.

I had some big plans this summer. In fact, all last summer, and through the winter I trained hard on the bike, running and swimming to ready myself for several big races I was determined to participate in. I think I was in the best shape of my life at the beginning of this year, in fact. Could swim a mile, run at least a 10K, and bike 100 miles . I felt good. I had planned on racing in the Utah Half Triathlon, and even signed up and paid for the Salt to Saint, 24 hour biking relay race. It was going to be a great summer.

But then I got sick. In March I started showing some vague signs of my Ulcerative Colitis (UC) returning. Nothing too drastic, I was still able to run in the Dirty Dash, and bike often, having no pain and little discomfort. However, I wanted get the problem taken care of, and having not have a flare-up in about four years, decided I should find a GI doctor to evaluate me and mainly just make aware that I was showing UC symptoms. I had all the meds I needed, but still thought it a good idea.

The doctor, (Dr. Schmidt) thought it a good idea to give me a colonoscopy to confirm that I did indeed have Ulcerative Colitis, and not something different like Crones, etc. Although, at the time I figured the procedure couldn't hurt I also knew it was completely unnecessary as I'd already been diagnosed, and have an accompanying disease called Pyoderma Gangrenosum, that only  appears if a person has UC. But, anyway, I got the colonoscopy, confirming I had UC and showing where the flareup was.

They upped my meds to help fight it, however, because of my already compromised immune system the colonoscopy caused me to get a very bad Clostridium difficile infection (C dif).

At Provo hospital, in the ICU after the blood clot proceedure

Two days after the colonoscopy I began to have sever stomach pain and began passing large amounts of blood in my stool. It wasn't until a week later that I was able to get a lab order from Dr. Schmidt to try and see what was going on, which indicated the C dif infection.

Because of the constant pain I was in, and not to mention the effects of the antibiotics I then had to take I was bed ridden--couldn't work at all.

I feel here is where things, for me started to really weigh down. We went through our humble savings quickly at this point, needing to get meds and go to doctors, etc. and not being able to move through most of the day, and not being at work both Lesa and I felt the stress and burden of not only the illness, but financial worries. I spent a lot of the day in agony over what we were going to do, but thanks to some very wonderful people, (and my family, especially), we were not left stranded and without a way to pay bills and feed our kids.

After being on antibiotics for a week and a half, and not getting any better, but really feeling worse and worse I went into the hospital, under Dr. Schmidts direction. I had to go up to the Riverton, Alta View hospital, which made things more difficult as it was a ways for anyone to travel.

Maddox one day made a stack of my pills. After the
blood clot the amount doubled.

The doctor confirmed that the C dif infection was gone, and that we now were only dealing with UC. I felt relieved, and saw an end in sight. I hoped they could put me on better medicine to treat the UC, as I was still in a lot of pain, and bleeding quite a bit--the meds I was on did not seem to be working. However, after two days and minimal visits from the doctor, I was still taking what I had been taking at home and the doctor still refused to make any changes to how I was being treated. After four days and a lot of frustration in the lack of support being given, I asked to be released. 

I really can't express how frustrating this was. I sat in the hospital taking the same meds in the same way that I had done at home with no difference except for where I was. I would talk to my doctor every day about getting on something different, however, he would not consent to doing something more effective (which, the treatment I wanted to be on, as it turns out is now standard). I would constantly tell him that this has been going on since March, but it would fall on deaf ears and he continued to say this treatment is all he was willing to do. 

First hospital visit.

And so, after four days of a worthless hospital stay I insisted on going home, not feeling any better than before. Before leaving, he ordered an X-ray, (the first test done since I'd arrived) which showed the UC had not gotten any better from the time I was admitted. It was a week later, still being bed ridden and very sick that I met with my doctor again to try an discus getting on the meds that I knew would help. He finally consented, but, I first needed to go through a series of tests to make sure I was healthy enough to be on the meds. (The medicine was an IV treatment that would greatly effect my immune system and so I needed to be sure I didn't have TB, or any STD's as well as test for C dif). The results came back -- I still had C dif.

I called my doctor, frustrated and angry that this infection was still here, (and probably never really went away) asking to be put on a more potent medicine, Vancomycin, explaining that I had not worked for 3 1/2 weeks and really needed to get this taken care of. He refused to change my meds, putting me back on Flagyl. After a week of still more severe pain, stress over work and money and near immobility, the meds having no effect on any of the symptoms I showed I woke up at 5AM with severe pain in my left leg. Lesa and I both thought it was a charley-horse, or something like that and so I laid in bed, ate a banana and hoped the pain would leave. But it didn't, in fact it continually grew worse. 

At 7AM I stumbled out of the bedroom in immense pain to see Lesa staring at my leg in shock. I looked down and my calf had turned purple and was extremely swollen. It felt as though every muscle in my body had flexed and I could barely touch it. She rushed me to the car, along with the kids all while calling my mom to meet us at the emergency room. I still am not sure how I made it into the car, or especially into the emergency room. My Mom, (and eventually, Dad) stayed with my in the ER while Lesa took care of the kids. I cannot describe the pain that I was in at this point and after four 4mL doses of Dilaudid, (a very potent pain killer), my body finally stopped shaking from the shock and pain. The did an ultra-sound on my leg and found that I had a deep vein thombosis, (DVT)--or blood clot in my calf. 

Still in a great amount of pain, the put me in an ambulance and took me to the Provo hospital. The plan, (as far as I understood it) was to go in from behind my knee and break the thing apart, or blast it, or something. Once that was done they would put me on blood thinners. Apparently, this proceedure was a bit risky, but because of my good heath, (current conditions not counting) because of biking, etc., this operation should work. The standard treatment, (I guess) is just massive blood thinners with some other meds to slowly break it apart. So, needless to say, I was glad they could go in and get rid of the thing quickly. 

I stayed in the ICU for another two days after. This was because, after breaking up/removing/blasting the clot, I needed to be on blood thinners. This was especially risky because of the UC and C dif that caused me to already bleed quite a bit. Here, I got a team of doctors, (vascular, GI, infectious disease, and the hospitalist) who began to work with me and ALL of my conditions. Getting me on new medicine for the C dif, creating a plan to deal with the blood thinners, and clot, and preparing me to get on the IV treatment (once the C dif was gone) for Ulcerative Colitis. 

I needed iron.

After five days in the hospital I was released, already feeling slightly better and much more positive than I had felt in five weeks of being sick. 

The Sunday after, (I was released on a Wednesday) I stopped passing blood. The following week was a bigger turnaround than I thought possible. I was able to get out of bed and walk (hobble with a cane) around. The pain began to lessen significantly, and a week after getting released I began physical therapy on my bike (mounted on a trainer). I felt great and planned to go to work the following week. I went to multiple doctors appointments, (dropping Dr. Schmidt completely), and with each one was reassured that they knew what they were doing. 

I still am working on getting to be 100% better. I've lost over 30 lbs during this whole thing and have very little strength, but I'm determined to train and work hard again for the rest of summer and over the winter to be back to where I was at the beginning of the summer. 

I also cannot express how grateful I am to all of the people that helped us along the way, emotionally, physically, financially, etc. (you know who you are and I will never be able to thank you enough). The emotional strain that all of the worry I had would have been so much worse without all of your help. 

Also, I cannot thank Lesa enough. I wish I could just write about all that she did to take care of me while I was sick. Seriously, it is unbelievable. She set up appointments, made countless calls for info and help with treatment, took me to all my appointments and labs, dealt with many unsavory people (that's for another post), supported and dealt with me and my multiple breakdowns and struggles and shortcomings and frustrations. Kept me uplifted and positive through much of it, took care of the boys, got my meds and the list goes on and on. She truly is amazing.  

All in all, this took place over 8 weeks, 6 of which I could not work. It was a long hard road, but now, it seems that things are getting much better.