Fistula Day

DustyMark's Journey 4 Comments

October 15th

This won’t get very far before my computer will crash. I have GOT to find time to get the battery replaced. Time..who has enough of it.? 🙂

I also can’t wait a full week to update because then I forget what I wanted to say.

We had 4 days of dialysis at home and each day was a little better but not one day was without alarms. Monday night there was a storm rolling in with alout 20 mins left. Once the lights starting flickering I told Mark “if we don’t get you off that machine and the power goes out…you won’t get your blood back.” We made a quick decison to end treatment but my whole body went into full adrenaline mode and I got hot and panicky and sweaty and shakey. I got to thinking..if the lights go out…how can I see? So the kids assisted and I was able to get his blood back to him and finish up. The power never when out. I didn’t yell or lose my cool but I was not proud of how I handled that. I hate the feelings dwell up in me when I’m unsure.

I still have not been able to get the Pureflow machine working and so we are hanging 8 bags of dialysate a day. I always see ways to better systems and this Next Stage company needs to not only be able to troubleshoot (which they do) but they need to send Technicians out to your hosue to fix the problem. All they do it keep sending me different parts of the system, only to have it keep alarming at me. Obviously, something is not meshing well and it could be an easy fix but hey– just keep sending me machine parts…and I have to assemble etc. I also have to throw away Paks and Saks…what a waste. Such a wasteful industry (medical). Yesterday we finished our session with one alarm that was trouble shot without any hitches and I did not have to call our nurse at all! I felt like someone should have presented an award to me afterward.

Today is Fistula day and so no dialysis…sadly that means we have to do it tomorrow. Here is a video if you want to understand what the surgery is and why its needed. Right now we access his vien and artery through a Cardio Vascular catheter in his chest. This can more easily lead to infections and bacteria and they get finicky over time. Having one in your arm is way better (so I’m told) Plus, I just don’t like that I have to access by his heart!


So the Lenvima is on it way to our house today …FINALLY. This is the oral target pill that goes with his immunotherapy. They are suppose to work together. It took a while but it was approved.

Mark has to take half the dose because it does not dialyze out and he has no way to filter it out so he has to start small. (it showed up Friday)

Mark seemed to have a higher level of energy this past week and felt overall better. After stiing in his “new” chair for dialysis he claims it wrecked his back again and “he is never sitting in that again”. We have the princess and the pea over…..(hold)

—Yeah. It died. I’m back 12 hours later after a long day—

(cont’d)…here. He feels everything because he lost the cushion in his rear and back. So I need to invest in a very soft, wipeable, good looking, comfortable recliner.

Mark has to take half the dose because it does not dialyze out and he has no way to filter it out so he has to start small.

I forgot where I was at. I don’t remember what all I was going to say. Mark and I have talked alot about what is God’s purpose in all of this. How is God glorified? So many people have reached out to Mark through this and I really think that Mark showing the trust he has talked about his whole like is such a huge testimony to so many people, especially people that go to church…call themselves christians but don’t walk it in their life. They don’t filtrate it in their daily activities. I think it can be huge. I know we won’t always know why….but. Here’s a fun story.

Mark will tell it better. Yesterday? No-Wednesday. We left the colon hydrotherapist’s house (yes, this is still very important in Mark’s health and a weekly visit). Mark goes ahead to walk and I talk for a moment and go “find him” and we head home. I couldn’t find him right away and then it dawned on me that he would go the way we drive out (I know, duh dusty) Anyways, I see him talking to someone on the side of the road and I didn’t know it was even him at first. I wondered if he just started talking to this poor girl, telling her about Jesus….or he recognized someone he knows here in this neighborhood? Weird. So I pull over so he can get in and it took him a moment. When he got in he told me the story that he was stretching….. and this girl pulled over and asked if he had chronic pain. Then she told him she knew this was going to sound weird but asked if she could pray with him (I chuckle a bit because she has no idea who she just pulled over!!). So she quoted a bunch of scripture..including some of his favorites..and talked about the pain leaving…but the think that really got Mark was at the end she prayed that she knew God had more for him and that this isn’t it and that God has more for him after this. I know that doesn’t sound crazy…but if Mark told you the story …it would be better. See, I think Mark was wondering…is this it? Is this all I have left in life? Is this the end? And to have this young charismatic gal pull him over (prompted by the Holy Spirit) and pray very specifically for him that seems very personal for someone who does NOT know him….it felt very spirit driven. It felt very God planned to Mark. Because, well, it is. All things are God planned. But it makes Him very alive and real when you start to doubt life in general. If you see Mark, ask him about it. Even today he talked very boldly (before meds) with the staff at St Mercy’s. When Ellen came back to get me she seemed very compassionate and empathetic and said to me…”It doesn’t seem like God’s plan does it?”. No Ellen, it doesn’t. But thank you for speaking of God. I can just assume she knows HIM. By the way…St Mercy’s is great!! Clean and organized and professional and if you get a choice…go there.

Today we ran into a relative we know really well and love. Why was she there today? Obviously for medical reasons and personal stuff that is irrelavant but she was there…today at 7:30am when we were there. We haven’t seen her since G&G funerals the weekend Mark was really sick…and we really haven’t been able to connect. It was so nice to have her there to talk to and even things like that are not coincidences….God planned that little meet up. Just like he planned all the times Mark led basketball leagues devotions…and then continued to play ball with these guys that weren’t believers. Just like God led women into my workout classes or into the boutique I worked at or in front of my camera. It is a story being weaved and we have no idea it is happening or how it will end.

Tonight at the ceremony, Mark had several people stop him to wrap him in bear hugs and just love on him and even just shake his hand. It was nice. It is real relationships with people in our community and we do love it. Aly was driven in a car by her brother in the Homecoming parade. She was on court her freshman year and it rained then too. sigh. Can’t control the weather.

Somehow I screwed up the photo thing again…but the evening was great because Mark could go to the parade and walk Aly out to be presented on the court


My parents came to our house after the ceremony and that was the most I have seen my dad is 2+ months.  It was good to have them here.

I gotta go bed.

Comments 4

  1. This is AMAZING! When I saw that picture at the top of Mark doing the fistula surgery, I thought …. wow… he looks super! Then when I read about the person stopping to p ray with him and give him so so so much God encouragement., I was thrilled. Fabulous! For the life of me, I have no idea who this could be. It does not match anyone who I know on our block. Makes it all the more a huge gift and mystery. Everything else here about the Homecoming and him being able to walk Ally just made me so happy. Thank you for the effort you make with this blog, Dusty! Lots of love to you, Mark, and your family!

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  2. Praying frequently for you guys. The prayer story is especially beautiful. Mark’s influence remains strong around our airport. He is deeply respected and loved!

  3. Thank you for the update. We continually pray for all of you. Thank you for your example of trusting the Lord. He always rewards those who trust Him.

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