Fistula redo

Last Thursday we had a hard time with Bryce's pressure coming from his site during treatment. The machine beeped pretty much non stop for two hours so we had to end dialysis early. We thought maybe the site in his arm was being temperamental- sometimes it just freaks out for no reason. Usually we are able to get it fixed and continue with treatment but no luck his time. Friday night we went to dialyze and as part of our pre-treatment checklist we have to see if his fistula is getting good blood flow. We can listen to it with a stethoscope and feel the strong pulse with our hand. We checked and didn't find either. Bryce called our Home Hemo Nurse who told us that could mean a blood clot in his fistula, so she would schedule an emergency fistula-gram for Saturday morning.

Saturday at 11 Bryce went in for his fistula-gram in the radiology dept. They planned to go in with a sonogram machine and map his veins, see if there was a clot and if they could clear it out. They found three clots up in his fistula veins and spent three hours ballooning his veins to try and clear the clots and get the lines to open back up. No luck. Last resort they put in a chest catheter (CVC) like he had when we first started for us to dialyze with in the mean time. 

We've done three treatments with the CVC and it's annoying- with a higher risk of infection (since it's basically an open wound) we have more precautions and steps to take when we dialyze. It is less comfortable for Bryce and sets off the machine alarms a lot, which wakes us up all night and makes the treatment longer. 

He had an appointment with the vascular surgeon today to see if the fistula could be saved or if we would need a whole new one. He gave us two options: 1.) Do a surgery on the right arm (his current fistula is in his left) and add a whole new fistula there. 2.) Do a surgery on his left arm and add a graft in the current fistula deeper in the arm to make it work. The doc recommended the first option, so surgery is scheduled for next Friday May 6th. The new fistula takes about 6-8 weeks to heal, mature and be strong enough to use so we will have to dialyze using the CVC in the meantime. The first time he got sepsis was from his CVC so that's obviously a concern at this point for us. Not sure if we will be able to go back to evening treatments so we can get better sleep at night or if because we get better cleaning and dialysis we will just have to suffer thru and do it at night.

This is just one more thing that makes us even more anxious for a transplant and hoping for a call any day that they've found a match! 

Nocturnal guinea pigs

A couple months ago our HHD Nurse (Head hemodialysis nurse) told us about a new kind of dialysis that had just gotten approved in the U.S. She said with Bryce's factors we might be a good candidate for it, that the dialysis center was currently writing procedures on it, and she would keep us informed on how the process went. They discussed it with Dr. Senekjian at Bryce's clinic visit in June, and he agreed that Bryce would be a good match if it was approved before he had a transplant. Our HHD nurse ordered all the parts and pieces and worked on getting everything lined up to get us started on it. We've spent the last couple weeks making changes to accommodate the new set up (moving furniture, installing electronics, plumbing lines being run, etc.) Some of the parts were on back order, so it took a few weeks longer than we were thinking but the last essential piece arrived on Saturday.

The new process is called Nocturnal hemodialysis, meaning the machine runs while we sleep at night. It uses the same machine and method with slightly different settings and equipment. Before it would take about 3 1/2 hours of time on the machine, plus about an hour for set up and take down. Now we change the settings for the machine to run much slower, which provides better cleaning (hypothetically) and reduces the potential of low blood pressure problems since the fluid is being removed at a rate much closer to what your functioning kidney would. Hopefully this will also improve his blood work numbers and we will be able to eliminate a prescription he has been taking three times a day.

Because the machine runs while we are asleep, it means we aren't constantly monitoring his vitals like we used to before. So we have more monitors and alarms in case a problem should arise and we don't wake up for it on our own. This in addition to Bryce sleeping with a CPAP makes for a pretty crazy sleeping arrangement- lots tubes and wires and plugs and cords all over the place. But we are grateful for the blessings of modern medicine and technology that make all of this possible from our bedroom! Pretty amazing.

The nurses came last night to help us get started and get comfortable with the new parts and settings. One of the changes that comes with this new machine is a heparin pump. Heparin is a medicine we use every treatment, it's a blood thinner that keeps Bryce's blood from clotting while its outside his body and running thru the machine. His treatment used to be short enough that one dose at the beginning would last til the end. But since the machine is running so much longer now, just a starting dose wouldn't last the whole time. So we have a pump, similar to an IV pump at the hospital, that slowly releases doses of Helprin throughout treatment. It's a little finicky, and not at ALL user friendly. 

We spent a while figuring it out and the appropriate dosage of heparin for the length of our treatment before we got settled in last night. The machine was set to finish at 4:15 AM and would alarm when it was done. It went really well, no extra alarms or problems during treatment (at least not that we heard!) so we woke to the finishing beep and got him unhooked and went back to sleep. I'm sure it won't always go this smoothly, but it gave us a little confidence since we were kind of unsure. Bryce is the first patient at this center to do nocturnal dialysis; He's also Dr. Senekjians first nocturnal patient and he has been practicing nephrology for 30 years. We will be the guinea pigs and figure things out as we go, but we are so glad to be in such capable hands. We're hopeful this will be a good, effective change and that it will improve the quality of treatment and also our quality of life for the duration of this dialysis part of our lives, however long it takes.

Jones-ing for the good stuff

Trying to stay ahead of this story, or at least not behind it, this time around.

We had an awesome trip to Missouri and Colorado a month ago; We got to do and see tons of people and things I've been wanting to do with my kids for a long time. We took the dialysis machine with us to dialyze while we were there and had our supplies and fluid shipped right to my sisters house where we would be staying and dialyzing. Like most vacations it was lots of late nights and early mornings and exhausting activities, so when we returned home and were tired we didn't think much of it. You've heard the "I need a vacation from my vacation!" a day or two to recharge and get back on a schedule and acclimate to real life again. But Bryce just couldn't seem to get his energy back, even as the days of being home stretched on. He was coming home at lunch for naps, falling asleep during treatment, going to bed early, sleeping in and napping on weekends and still was always exhausted.

We had plans to go to Idaho for the 4th of July and leave Friday the 3rd and come back Sunday the 5th. Thursday evening while dialyzing we noticed during treatment that his temperature was rising and he was getting a fever. He took some Tylenol and went to bed early, we decided we would see how he felt in the morning and postpone our trip if needed, leaving Saturday morning if he felt better.

Friday he woke up still feeling awful, and still had a fever so he took more Tylenol and went back to bed. I went to SLC with the kids who stayed with Moff while I went to a wedding. About noon I talked to Bryce and he said he still wasn't feeling better. We decided to let him rest and see if he woke up feeling better Saturday morning and then we would head to Idaho. I brought the kids home and we all took naps. About 4PM Bryce said he was feeling better and we should try to go on our trip. So we packed back up, loaded the kids and got on the road. We got to Clifton about dark and set off fireworks that night before putting kids to bed and crashing. Bryce's fever was back, so he took some more Tylenol.

I woke up to him telling me his right ribs hurt and he thought he was going to throw up about 5:30AM. He headed upstairs to get a blessing from his Dad and Linc and rest on the couch. I didn't hear any more from him, so I slept til about 9:30 then came upstairs. He said the pain was really bad and we needed to go back home to Provo. Mom said Hollie had already called and said she could keep the kids until at least Wednesday. I wanted them to stay and be able to play with cousins (both Pierce and Jane cried Friday morning when I told them we weren't going to Grammy's) and do fun 4th of July activities they had planned. Plus, if Bryce ended up in the hospital it would be hard to keep finding people to watch the kids. So I packed everything up (again), kissed our kiddos and started the drive back to Provo.

I dropped Bryce off at the ER when we got into town and went home and unloaded the car before coming back to join him. (Side note: we have spent a lot of time at the ER and I have never seen it like it was that day: standing room only in the waiting room, 27 people behind us waiting to get in, had to park out on the street because the lot was full. It was a madhouse, exactly like what you'd see on TV) He was set up in an ER bed with his IV in and monitors going (oxygen, blood pressure, heart rate, etc.) The doctor came in after a while asking about symptoms and doing a consult with us. He said the X-ray they took when Bryce got here looked fine, and based on symptoms they were going to check for a blood clot in his lungs or pneumonia. He was in a TON of pain, could barely breathe and kept asking for pain medicine. They gave him some dilaudid in his IV, that made him comfortable enough to rest until it wore off. He went for a CT scan and they drew more blood to test for a clot (who knew they could test for that with blood work?!) (Another side note: Bryce's reaction to the dialudid was hilarious, and if he hadn't been in so much pain I think he might have been a little embarrassed. He was going on and on and on and ON about about good it felt. I told him he needed to be careful or they were going to think he was just jonesing for a fix of pain meds!)

About an hour later the doc came back and said the CT scan showed some fluid/infection in the bottom portion of his left lung, which was causing the problems (pain, cough, trouble breathing) and they were diagnosing and treating him for pneumonia. His BP (blood pressure) was also really low (80/40) and the doctor was concerned about that. They gave him some saline fluid, antibiotics, pain meds, and a medicine to raise his BP thru his IV over the course of about 2 hours. The doctor told him if we didn't get that BP up they would need to admit him. Bryce put up a good fight, but the doctor finally convinced him he was sick enough (according to his numbers) that he was being admitted, the question was whether it would be to a regular floor or the ICU.

After 3 liters of fluid and the BP medicine his numbers were still only 105/49. The critical care doctor came in and did a consult with us about symptoms and medical history, also informing us if they got him up to his ICU room and his BP didn't get better they would have to put in a chest catheter as a last resort to be able to give him adrenaline straight to his heart and fluids if he started to bottom out. That got our attention, and made Bryce realize he needed to be here in addition to the pain that kept coming back every time the dialudid would wear off.

They got us a room in the ICU and moved us up about 9PM and got him settled. I left for about an hour and a half to go visit a friend of mine and her new baby that are here in the NICU, and when I came back he was ready for bed. His nurses here in the ICU have been so good, very attentive and positive, getting him everything he needs as soon as he needs it (or in the case of pain meds, as soon as he is allowed to have it). I got him all ready for bed and then went home to sleep.

He had a rough night, the pain got worse so they had to up his pain medicine dosage, which made his BP go down. They got him up and walking around a little bit (which he said was really hard and hurt) but it did bring his BP back up to where they want it. The doctor did tell us we caught it early enough that he probably hadn't peaked yet, so the pain could get worse before it gets better; And they would give him as much pain medicine as he felt comfortable doing.

I got back about 11 this morning, and a couple brought is the Sacrament shortly thereafter. He is set to dialyze here in the hospital at some point today, and it looks like they will be keeping him for at least another 2 days. I know he isn't feeling well and needs to be here, despite fighting it at first, because he told me this morning he was really glad he didn't go home last night. The pain would have been unbearable at home and led to another ER visit and wait and eventually admittance.

He's getting good care, we have awesome support from friends, family, our ward and our neighbors. I've said it before and I'll say it again: We have the dream team of support! Not having to worry about the kids (or feel torn that they're at home missing me while I'm with Bryce) is a huge relief. And I know they are having a blast with cousins. Right now we are focusing on getting Bryce feeling better and well enough to resume regular life.

Official diagnosis

The day after the coma incident, we got into Bryce's doctor to have his bloodwork drawn. (Friday)

The following week (Wednesday the 8th) they called Bryce with the results while he was at work. He came home that evening and didn't seem quite his usual self. He was quiet and I could tell his thoughts were off somewhere else. I mentioned it, he said he was fine. But as the time wore on I knew something else was up.

So when the kids went to bed I approached him about it again. He admitted rather reluctantly, that they'd gotten the results of his bloodwork. His kidney was failing. It was official. They told us that would mean surgery and dialysis at the center, monthly appts with Dr. Senekjian. We didn't know exactly what dialysis was or what it entailed so we weren't nearly as bummed out about starting it as we would have been if we had known. We did know it wasn't good though. And that it would change our lives for forever.

This was all so new, even though Bryce had done it before it was very different this time around. We weren't sure how to handle it, what to say or what to do next. There was some time spent just floating around, with this life changing diagnosis but not sure what we needed to do next or what it meant for now.

Luckily, the doctors are very on top of it and took the steps to move us into what came next. Dr. Senekjian doesn't have admitting privileges at the hospital here, so he told Bryce he could either come up to Ogden for his hospitilizations and surgeries (which was nice he gave us the option, but it wasn't possible) or he could give Bryce's info to a nephrologist here, Dr. Hammond, in Provo who could oversee Bryce's care, hospitilizations, surgeries and dialysis all while keeping Dr. Senekjian in the loop. Obviously, that was the only clear choice so that's what we decided to do.

Side note: That weekend we were scheduled to make a road trip to Missouri to see my family for my Dad's 60th birthday (we'd been planning the party/reunion with my siblings for months). Not understanding the urgency of dialysis we naively thought we could have still made the trip. 

On Thursday (the 9th), Dr. Hammond called to let us know Bryce would have to go to the hospital that weekend and have a chest catheter put in for dialysis and fistula surgery. We had no idea what either of those was, and no one bothered to explain it to us. We were given instructions to show up at Outpatient surgery Friday morning at 6AM. My sister Marianne came to stay with the kids and we planned to spend the majority of the day there, but then come home that evening.

We got there to check in and they started asking us questions to verify "So you're here for fistula surgery?" "You're staying the weekend?" And we had to say "We don't know. They told us it would just be outpatient surgery." They looked at us like we were crazy, and obviously this was a surgery that required a hospital stay. We very in he the dark about all of it, which was a really scary, frustrating place to be. So much of this whole situation was completely out of our control, and anyone who knows me knows I don't like being out of control 😁

They got us checked in and headed back to a room, waiting to go into surgery. The vascular surgeon, Dr. Ballard, came in and said "I'll be doing your fistula surgery today huh?" We said "That's what they tell us!" I think it was pretty clear from that response that we were really uninformed about what this all meant. He took a few minutes to explain the fistula; the what, why, who and how. It takes 6-8 weeks at the least for the fistula to be strong enough to use for dialysis, and in the mean time Bryce needed treatments. So on Friday morning they took him back to put in his chest catheter and get him started on dialysis right away at the hospital. 

Here is an illustration of the chest catheter and the fistula

 

Surgery only took about an hour, and he was in quite a bit of pain afterwards in his right shoulder where they put the catheter in. He woke up more as the day wore on though and was in a bit better mood. He was pretty upset he had to stay in the hospital all this time. He felt fine, but apparently it had been Dr. Hammond's plan all along we would stay thru the weekend, although once again no one bothered to tell us that! We still get upset about it, there was no reason he couldn't have come home over the weekend and returned Monday morning for surgery. 😤

Saturday evening Bryce's Mom came down to help for the weekend, so she got some time to visit with him. Sunday we brought the kids up to the room after church and Moff joined us with Mom and we all had a good time in the room. 

Some of the fun from the hospital room Sunday evening

Monday morning dawned bright and early, his fistula surgery was scheduled for 6AM, so I woke up and headed to be there before he went back and I could wait in the waiting room. If you've never spent any time in a hospital waiting room, I'd say wear that badge of pride! It was a great reminder though that there are other people and families facing much more serious health issues. In all things be grateful!

I'd be lying if I said I wasn't relieved when the surgery was over (it was only about three hours) and Bryce was back in his room. He spent the day recovering- sleep, wake up, ask for pain meds, repeat. I spent time texting family and binge watching the Game Show Network.

As soon as Bryce was able to be awake for longer than 5 minutes at a time, he started pushing them to let him go home. Tuesday afternoon he was doing well enough they discharged him and he came to rest and get feeling better here at home. He was back to work Wednesday and ready to get back to normal life. Or at least normal as we now knew it. 

42

In some ways, this post is a little bit tougher. And in other ways it's easier. The rest of the events with Bryce's kidney (excluding the post-transplant diabetes diagnosis) I wasn't there for. I hadn't met him, so while it's personal because I know it was my husbands history and his story, it was all second hand. This part is where it gets more real and in depth for me. I expect it will bring back emotions I haven't thought about or felt in a while. So, that said: here goes.

We went to Idaho for Christmas 2013 but with Owen only being 4 weeks old we hadn't planned to stay too long. The way it worked out with schedules for everyone we ended up doing the Transplant Party with Cooks the evening of December 27th at Bryce's parents. About the time the party started, Bryce started feeling queasy. He was sick thru the party- flulike symptoms, and then thru the night. We got home Friday evening and he rested and felt a little better and returned to work Monday and Tuesday. Tuesday was New Year's Eve and we had all had a little bit of a flu bug, so we put the kids to bed early and stayed up having a 'Downton Abbey' marathon and eating pizza. New Years Day we took it easy around here at home, Bryce still wasn't feeling real great. We watched some more 'Downton' and then went to bed, planning for Bryce to return to work Thursday January, 2nd.

At some point in the middle of the night I heard Bryce get up out of bed and fall back into the blinds on our bedroom wall. I asked if he was okay, He still had his CPAP mask on, so I couldn't hear what he was saying to me. He fell forward back into bed and was shivering. I put his blankets back on him and snuggled up to help him get warm, then he fell asleep. I assume he'd gotten up to go turn the thermostat up, or go to the bathroom and tripped over one of the cords over by his bed. And I thought the shivering was because he had the chills and a fever from the flu.

The next morning I got up with the kids, and I saw Bryce still in bed. I assumed he was up sick in the night and had called his boss, telling him he wouldn't be coming in. We came downstairs and did our usual morning routine with the kids. 

At 10:40AM my phone rang, it was Bryce's office. 

"Hi, Lissa this is Louise from Bryce's work. Matt just wondered if he was coming in today? He hadn't heard from him yet."

"Oh, I'm sorry. I know he was up sick in the night and I just assumed that he had called you. I'll go talk to him and have him give you or Matt a call."

I looked at my phone as I walked up the stairs, it said 10:42. I was holding new baby Owen and brought him with me. I walked into our room and over to Bryce's side of the bed. 

"Bryce...Bryce...Bryce!" I reached out and touched his shoulder, shaking him just a little. He is a pretty deep sleeper and is hard to wake sometimes. He opened his eyes and closed them again. I tried again. 

"Bryce!" I shook him, he opened his eyes and made eye contact with me for a split second. I told him to wake up. He tried to say something but with his CPAP mask on and the slurred way he was speaking I couldn't tell what he was saying. He closed his eyes again. 

I grabbed him "Bryce! You are really scaring me! If you don't wake up and start talking to me I'm going to call 911!" He closed his eyes. (This was the most terrifying moment of my whole life! I thought he'd had a stroke. And as we established when I was having Jane in the car, he is far too cheap to ever pay for an ambulance. I knew something was up if he was letting me call one.)

I grabbed my phone and dialed 911, got a dispatcher. She asked me questions about Bryce's medical history and his symptoms, asked how he was doing and stayed on the phone with me until the paramedics got here. They were followed closely in a few minutes by the Fire Dept. He was about as responsive to them as he had been to me. They pricked his finger and tested his blood sugar. 

It was 42. 

For Bryce just waking up it should be about 115. They got his CPAP off and an IV in his arm to give him some sugars. He pulled the needle out the first time and we got blood all over the sheets, but the second time they got it taped down and then gave him some stuff in his IV that helped him come to.

He started to slowly come around after they'd been talking to him for about 15 minutes. He didn't remember me trying to wake him up, or falling in the middle of the night. The first thing he remembers is laying in bed and looking up and being surrounded by paramedics and EMT's and me standing there with Owen. They said they thought it was a diabetic coma which happened as a result of when he got the flu, he didn't have an appetite so he wasn't eating much of anything. But he kept taking his pill to keep his blood sugar low, not really thinking about it. Those two things made his blood sugar drop dangerously low.

The EMT's said he was stable and doing okay now so they didn't need to take him to the hospital, but he did need to get in to see his doctor in the next couple days. We called Dr. Senekjian but got his voicemail saying he was out of the country on vacation. Luckily we were able to get ahold of the partner in his practice, who we have worked with from time to time and knows the medical history, Dr. Agarwal. He said Dr. Senekjian would be back in town the beginning of next week and could see Bryce then. In the meantime we were supposed to get in for a full blood panel and stop taking the medication that keeps his blood sugar down. Bryce went in for blood work the following day, but we wouldn't get the results for a few days.

The next couple days were emotionally hard. Bryce had serious anxiety about sleeping- he was afraid every time he fell asleep he wouldn't wake up. I had the same fears, it was terrifying. We got small bottles of juice, kept them by his bed and set an alarm for in the middle of the night and he would wake up and drink them to keep his blood sugar up. When I got up in the mornings I would wake him up, just to make sure he was okay. We were checking his sugars a lot, afraid of them getting too low. He was able to get a prescription for some Ambien which helped him sleep. I didn't sleep much, although I'm not sure how much of that I can attribute to Bryce and how much of it was having a 6-week-old baby.😳

I can't even let myself think about what if he hadn't been wearing his CPAP mask, which kept his oxygen up. 

Or what if his boss hadn't called? He said he almost didn't. 

Or what if the EMT's hadn't been able to get him to wake up.

Or if this hadn't happened when it did. We had a road trip to Missouri planned just a couple weeks later. What if we had been in a hotel somewhere in the middle of Wyoming?

It's all too scary for me to think about.

The Lord is in the details, we have seen just as many tender mercies in the hard times as we have in the good. We have truly been watched over and cared for, even when we didn't know we needed to be.

Thank You, Prograf

I guess I have been a little unsure of what to post about next.

The next several years passed rather uneventfully health wise for Bryce. He had a kidney infection Memorial Day 2007 driving back from Idaho and spent a couple days in the hospital in Brigham City. Regular blood tests are part of his post-transplant life now, so that helped keep him healthy and be able to catch problems early.

I remember on our first date he mentioned something in passing conversation about "When I had my kidney transplant..." I didn't think much of it at the time, and I don't really remember talking about it more, although I know we did. I saw the dozens of prescription bottles on his bathroom counter when we were dating so I knew enough about it by the time we got serious because I mentioned it to my Dad when I had my conversation with him telling him Bryce and I had decided we wanted to get married. He told me that taking on that kind of health issue could be taxing, so to make sure I knew what I was signing on for. I didn't think much of it: I was in love and had found the man I wanted to spend eternity with. His health was good at the time and since I wasn't around for the transplant I didn't have any first hand experience with what it meant when his health wasn't good.

The first few years we were married his kidney did great. No major sicknesses and no hospitalizations. There were several instances of gout which would get him down for a few days, but his prescription for that helped and he always bounced back.

We celebrated the anniversary of the transplant with the Cook's each December with a party.

In 2010 we moved to Wichita. When he had regular blood tests at our local hospital there they would send his results to Dr. Senekjian, allowing us to keep him as Bryce's nephrologist and work with him for prescription changes and what not.

The beginning of 2012 Bryce's regular blood work showed that his sugars were high. Dr, Senekjian suggested getting a local doctor in Wichita Bryce could go see for new issues that might arise and help him handle, since he was too far away for an in person appointment. We got a referral to see an internist, Dr. Tatpatti who ran further blood work. He diagnosed Bryce with post-transplant diabetes. One of the potential side-affects of an anti-rejection medicine Bryce was on, Prograf, was that over a long period of time it can cause your body to stop producing insulin, causing diabetes. Obviously you can't quit taking the anti-rejection medication! So we changed Bryce's diet pretty drastically to see if that would make a difference.

It didn't.

Dr. Tatpatti put Bryce on a prescription to keep his blood sugar regulated. That seemed to do the trick. After a few months of it being pretty steady we quit monitoring it so much and things were fine.

The Summer of 2012 we moved back to Utah so we were able to go back to Dr. Senekjian as Bryce's Primary Care physician. It felt good to be back with a doctor who knew the whole history and was so easy to work with.

Transplant Pictures

Found a few of these gems of Bryce and LaWrell in the hospital post-transplant. It was so long ago, it's kind of interesting to me to see these. And because this was pre-digital camera I haven't seen many.

Bryce and Mom walking the halls- Duke and Moff in the background

JoDee and LaWrell- thanks guys!

Resting in those luxurious hospital beds

Pain management!