At that point, there really wasn't an end in sight. We were in a "waiting mode" with his health issues. His UC continued to flare and his gastro-doc was attempting to treat that. Meanwhile we had just found out that Nate has a genetic mutation with his blood called Factor V Leiden that makes him susceptible to blood clots (UC and some of his medications are also risk factors for blood clots). At that time we were also waiting for a second scan on his leg to see if a deep vein blood clot they had found had moved. The results of that scan would determine if he would need a "minor" procedure to put a filter in a vein to catch any clots that formed from moving and causing more problems (i.e. death!). Because of his UC, they couldn't just treat him with blood thinners because he was bleeding from his colon and has been severely anemic.
Fast forward a few weeks...
Nate started feeling a tightness in his arm that felt similar to the tightness he noticed when they found the original blood clot in his leg. When we had the second scan that we were waiting for, he asked them about his arm and were able to scan that at the same time. During that scan they found blood clot number two that ended in his armpit - another deep vein clot. They sent us immediately down to the hematologists office. After some discussion, we determined that the bleeding risks from UC were worth treating him with an anti-coagulant right now, but agreed that it wasn't a permanent fix. Basically they told us that UC won't kill him right away, but a blood clot could, so they thought the best option would be surgery. Meanwhile, I feel like I am living with a ticking time bomb that could fall over at any minute with a pulmonary embolism or stroke. The doctor told us to watch for bleeding, shortness of breath, and chest pains. It has become a joke that every time one of us leaves the house I say, "Call me if you feel short of breath." If I can't laugh...I'll just cry.
Where we are today...
Through much research, prayer, and the advice of our slew of doctors...we have decided to have Nate's colon removed. This is scheduled for April 22nd. We met with a surgeon last week and determined that based on his current situation, they are going to do the procedure in 3 stages:
- Right away: Remove his colon, staple his rectum closed, create an ileostomy (and start using a fun colostomy bag to collect waste)
- 4-6 months later: Remove the rectum, take down the ileostomy to create a pouch and put it in place of his rectum, create a new ileostomy
- 2 months after that: Take down the ileostomy and connect the small intestine to the pouch.
Sorry to be so graphic...but colons, rectums, diarrhea are a major our life right now! It would be impossible to talk about this situation without a little bit of poop talk. That's just the way it is!
Anyway...removing his colon right away will actually cure the UC and allow the hematologist to aggressively treat him for his blood clots. Once he is fully healed from the surgery, removal of his colon will hopefully get rid of the pain, fatigue, anemia, and YES, diarrhea that has plagued him for what feels like forever.
The bright side...
Financially speaking, timing of this surgery couldn't be more perfect. We will be able to fit in all three surgeries in 2013 and we have reached our max out of pocket for Nate's insurance plan. This means that all of these extensive surgeries will be 100% covered. I feel like this is an example of the windows of heaven pouring out a blessing that there is not enough room to receive it. We feel so blessed.
The other bright spot is that we now have a treatment plan. No more trying this and trying that for his UC and waiting for it to work. I'm not very good at not knowing what is going on or not knowing what is coming next. Having a plan, as difficult as it may be, will help me sleep at night!
Right this second, I feel like it is going to get worse before it gets better. He is weakened and the medications he has been taking are immune suppressants, so he may be slow to heal. I don't really know what to expect, but I know that Heavenly Father is keenly aware of our situation. I feel so blessed to have the love and support of family, friends, church members, co-workers, etc. All of these people are angels here on Earth that I know will help us through the next few weeks/months - and with all of the subsequent surgeries. This is a huge blessing and comfort during this time.
I love my Nate so much and I hope and pray that this surgery will allow him to get his life back! Thanks to everyone for your support!
6 comments:
I will keep you and your family in our prayers. Hope all goes well with the surgeries. I hope you keep updating your blog from time to time.
Michelle and Nate I am so sorry to hear about Nate's health issues. I am so far out of the loop with the great people I used to work with. Know that you both are in our prayers. On the same note, I have a friend that is 75 years old and has had a bowel problem since she had her first baby,(nerve damage down there)and 2 years ago had a colostomy done. She says it is the best thing to happen to here since chocolate. If you didn't know she had it, you would thing everything was normal. I want you to know that I also know that our Heavenly Father is acutely aware of what is going on in our lives and sends blessings so abundant that, much of the time we don't even realize that we are receiving them. He will always be there for us, in the good and the bad. Let me know if I can do anything for you.
Oh Michelle, I'm sorry to hear Nate's having such frustrating medical issues, but I so grateful you have a plan and good doctors and faith. We'll be praying for you both. It doesn't sound easy for anybody.
You guys are in our thoughts and prayers. We're so grateful that we were able to get together and catch up, and so sad for you both that all of this 'old people stuff' has to be happening at all! We think the world of you both, and truly mean it when we offer help in any way possible...even if it's simply going thrifting to take your mind off of things Michelle! We love you guys!!!
Thinking of you Nate and your family. Hope all goes well!!
Hi Michelle, you don't know me. I knew Nate at Boise High. I saw something about his surgery on facebook, that made me curious, that led me to your blog. I promise, I'm not a crazy stalker. I just had to comment because my husband (another Nathan) also has Ulcerative Colitis. Fortunately for us his has not been as severe as it sounds like your Nate's has been. I don't think anyone can imagine the horror this disease is until they've witnessed or lived it first hand. I'm impressed with your positive attitude and ability to look on the bright side. I know how hard it can be to sit by at watch your husband suffer and try to keep your family feeling "normal" all on your own. I just wanted to give you a virtual high five and tell you to hang in there!
Post a Comment