Port and Infusion
When I first started my infusions about a year ago, a port was brought up. I knew I'd be receiving infusions for a couple of years, and so a port seemed like a viable option. For whatever reason, though, I just didn't want one. I guess it seemed to "brand" me as a cancer patient and I wasn't ready to accept that. Besides, I hadn't had any issues with IV's up to that point and it just seemed easier to me to get stabbed every time I went in. And so, I decided to not have a port put in.
Fast forward a year to a few weeks ago...
In the beginning, my IV's went really well. But for a while now, they've been rather annoying. There have been several times that three and four attempts at an IV has been needed. There have also been times when the IV that was placed was painful, including the last time that I had one. This last time, every time a flush was performed, it stung. Also, my IV's have been leaving bruises for weeks. In addition to these issues, there have been times that an IV was successfully put in, but then they struggled to get blood to flow out, despite me being extremely hydrated. Needless to say, I was getting tired of the IV's.
During one of my recent infusions, I had the thought that I needed to consider a port. Shortly after that, while lying awake in bed around 2:30 am, I had the thought that I needed to consider a port. Despite my initial reluctance when this all began, it started to seem like a better route for me to take. After praying, asking around, and doing a bit of research, I decided to get a port put in. I still have at least a year of infusions (that's 26 of them...) and I didn't want to deal with 26 more IV debacles. So, I called and had them schedule the procedure. The procedure was scheduled for June 25th, the same day as one of my infusions.
In preparation for my procedure, I needed to have a PT/INR test done, which measures how thin your blood is. I've never had an issue with this test, but for some reason, the results came back and it was really, really bad. My PT, which measures the length of time to clot was 63.1 seconds. Normal range is in the teens. My INR was 6 something, and they won't do the procedure if it isn't below 1.5. In other words, my blood was astronomically thin! We had no idea why... I was taking some supplements that can cause blood to be thin, but I couldn't imagine it making my blood THAT thin. Well... That was on Wednesday the week before the procedure. I stopped the supplements and went back the following Tuesday. Fortunately, my results looked MUCH better. My PT was 9.6 and my INR was 0.93. In other words, I was good to go with the port placement two days later!
The night before my procedure I received a priesthood blessing. I love receiving blessings for moments like this and am grateful for the restoration of God's power on the earth. It's a reminder to me of His love for us and His awareness of us. I have turned to the priesthood a lot throughout this journey and encourage all of you to do the same in moments of distress or concern or for anything related with disease/procedures. They can really provide a lot of comfort and peace!
My procedure was scheduled for 8:15 am and we needed to be up there at 7:15 am. So, we left the house around 4:30 am. It was an early morning! We made it up to the hospital in great time and we were looking forward to getting things done. After I was "admitted", I looked over the paperwork I was given. It indicated this was an elective procedure, which makes sense to me. But I began to be concerned this wouldn't be covered by insurance. So, when we made it up to the area for the procedure, I asked to make sure that everything had been pre-authorized through our insurance. Naturally, we were informed that it hadn't been. Oh boy...
When we've done anything through Huntsman, it has ALWAYS been pre-authorized with insurance. This procedure was being done through the U of U Hospital, and for some reason, it hadn't been pre-authorized. So now we have an elective procedure that hasn't been approved by our insurance. What do we do? Well, it's well before 8:00 am, so we sat and waited until we could talk to someone. In the meantime, I looked at how much this procedure normally cost on our insurance company's website. Somewhere between $5,000 and $6,000. So uh...yeah. If it's not covered, it's not happening!
Well... 8:00 am finally rolled around and I was able to talk to a lady we've worked with a lot at our insurance company. She assured me that it would be covered. Port. Outpatient. In-network. Covered. So, despite not having official insurance approval, we decided to go through with it. About 30 minutes later, we were informed it's treated as inpatient. Uh.... Okay. So I had to call back our insurance lady. Again, she assured me it would be covered. Despite not having this officially approved, we opted to move forward. By now, it was about 2 hour past the time we were supposed to start. It made for a longer morning than we had hoped for, especially considering we left home at 4:30 in the morning, but we were good to go. AND... We were notified prior to my procedure that insurance approval had officially been received, which was a great relief!
Oh... One wonderful aspect of this is that the visitor policy at the U of U Hospital recently changed to allow one visitor. So, Kim was able to come in with me for this procedure. Which we were both so grateful for!
Anyway, back in prep everyone was great. We didn't have any issues and things went really smoothly. As they wheeled me back to the operating room, I was told some people took a bit longer to relax with the sedation drug. I wouldn't be going under full anesthesia, just mild sedation. I told the nurse I'd got about an hour of sleep that night, so I was ready to just nap myself! haha They got me back on the table and shortly gave me the drugs. Needless to say, I was out! Pretty dang exhausted already. I do remember the doctor asking me a couple of questions just before the procedure ended, but I don't remember what she asked. Everything went really well, though.
After the procedure, they wheeled me back to my room to recover. Within just a couple of minutes they told me I could change and that my wheelchair ride over to Huntsman was ready for me. Basically, they were kicking me out within minutes of getting back to my room! Weird, but at least I was ready. At this point, Kim couldn't stay with me. Huntsman, because of the nature of their patients, still has a strict no visitor policy. So we said goodbye and I was wheeled over to the infusion center at Huntsman.
My infusion was scheduled for 12:40 pm. That was about an hour from the current time, but I had been told that they would get me in as soon as possible since I'd had the procedure and they have cancellations. The infusion center is always incredible at Huntsman. Within just a few minutes of being there, I was taken back. And, because my labs had just been done on Tuesday with my PT/INR test, I didn't have to have labs drawn. So, they started making up the drug and started my saline drip.
I learned a couple of things having the port in me...
1. It is REALLY nice to not have the tubes attached to my arm. I was free to use my arms without reservation and the tubes could be placed over my shoulder and out of the way. SO nice!
2. Don't wear a shirt you like! They really had to stretch the neck of my shirt to connect to the port. So, moving forward I'll likely just wear a quarter zip jacket that grants easier access to the port.
But, it was really nice. And I was able to finish up my infusion just a little bit after 1:00 pm, which was great! That meant we could get home earlier than we had anticipated. A big relief since it had already been a long day.
After leaving the hospital, we stopped by and visited with my grandparents and aunt for Father's Day and then we swung by my parents' house to see them for Father's Day and my mom's birthday. It was really good to visit with all of them and spend some time with them. We then headed home and got home at a good time.
It was a long day and I was exhausted. The insurance stuff certainly threw a bit of a wrench into things, but everything ultimately worked out great and the day was great. I love spending time with Kim on those long drives and was very grateful she was able to come in with me. I look forward to when she can come in with me for the infusions.
My recovery from the port placement has been great. I never had to take pain meds and haven't experienced any pain. Some slight discomfort, but other than that it's been just life as normal! I do struggle with energy a lot lately. I'm tired a lot, but other than that, I'm doing well. I am continually learning as this journey progresses and look forward to what's in store moving ahead!
Below are photos of the port procedure!
My next infusion is in a couple of weeks. I'll have an x-ray done on my left arm to see how it's doing a year after surgery. I was also able to transfer from the one neurologist to another, which I'm very grateful for. I'll eventually have an EEG done and then meet with him. I also have a brain MRI scheduled for early August and more CT scans in September. There's always stuff around the corner! I've been doing well from a seizure standpoint since going on this new steroid schedule. I hate the steroids. My joints, especially my knees, bother me and I've ballooned up again. I look forward to getting off of them and getting back to lifting weights. Just want my body back! Onward and upward!
Fast forward a year to a few weeks ago...
In the beginning, my IV's went really well. But for a while now, they've been rather annoying. There have been several times that three and four attempts at an IV has been needed. There have also been times when the IV that was placed was painful, including the last time that I had one. This last time, every time a flush was performed, it stung. Also, my IV's have been leaving bruises for weeks. In addition to these issues, there have been times that an IV was successfully put in, but then they struggled to get blood to flow out, despite me being extremely hydrated. Needless to say, I was getting tired of the IV's.
During one of my recent infusions, I had the thought that I needed to consider a port. Shortly after that, while lying awake in bed around 2:30 am, I had the thought that I needed to consider a port. Despite my initial reluctance when this all began, it started to seem like a better route for me to take. After praying, asking around, and doing a bit of research, I decided to get a port put in. I still have at least a year of infusions (that's 26 of them...) and I didn't want to deal with 26 more IV debacles. So, I called and had them schedule the procedure. The procedure was scheduled for June 25th, the same day as one of my infusions.
In preparation for my procedure, I needed to have a PT/INR test done, which measures how thin your blood is. I've never had an issue with this test, but for some reason, the results came back and it was really, really bad. My PT, which measures the length of time to clot was 63.1 seconds. Normal range is in the teens. My INR was 6 something, and they won't do the procedure if it isn't below 1.5. In other words, my blood was astronomically thin! We had no idea why... I was taking some supplements that can cause blood to be thin, but I couldn't imagine it making my blood THAT thin. Well... That was on Wednesday the week before the procedure. I stopped the supplements and went back the following Tuesday. Fortunately, my results looked MUCH better. My PT was 9.6 and my INR was 0.93. In other words, I was good to go with the port placement two days later!
The night before my procedure I received a priesthood blessing. I love receiving blessings for moments like this and am grateful for the restoration of God's power on the earth. It's a reminder to me of His love for us and His awareness of us. I have turned to the priesthood a lot throughout this journey and encourage all of you to do the same in moments of distress or concern or for anything related with disease/procedures. They can really provide a lot of comfort and peace!
My procedure was scheduled for 8:15 am and we needed to be up there at 7:15 am. So, we left the house around 4:30 am. It was an early morning! We made it up to the hospital in great time and we were looking forward to getting things done. After I was "admitted", I looked over the paperwork I was given. It indicated this was an elective procedure, which makes sense to me. But I began to be concerned this wouldn't be covered by insurance. So, when we made it up to the area for the procedure, I asked to make sure that everything had been pre-authorized through our insurance. Naturally, we were informed that it hadn't been. Oh boy...
When we've done anything through Huntsman, it has ALWAYS been pre-authorized with insurance. This procedure was being done through the U of U Hospital, and for some reason, it hadn't been pre-authorized. So now we have an elective procedure that hasn't been approved by our insurance. What do we do? Well, it's well before 8:00 am, so we sat and waited until we could talk to someone. In the meantime, I looked at how much this procedure normally cost on our insurance company's website. Somewhere between $5,000 and $6,000. So uh...yeah. If it's not covered, it's not happening!
Well... 8:00 am finally rolled around and I was able to talk to a lady we've worked with a lot at our insurance company. She assured me that it would be covered. Port. Outpatient. In-network. Covered. So, despite not having official insurance approval, we decided to go through with it. About 30 minutes later, we were informed it's treated as inpatient. Uh.... Okay. So I had to call back our insurance lady. Again, she assured me it would be covered. Despite not having this officially approved, we opted to move forward. By now, it was about 2 hour past the time we were supposed to start. It made for a longer morning than we had hoped for, especially considering we left home at 4:30 in the morning, but we were good to go. AND... We were notified prior to my procedure that insurance approval had officially been received, which was a great relief!
Oh... One wonderful aspect of this is that the visitor policy at the U of U Hospital recently changed to allow one visitor. So, Kim was able to come in with me for this procedure. Which we were both so grateful for!
Anyway, back in prep everyone was great. We didn't have any issues and things went really smoothly. As they wheeled me back to the operating room, I was told some people took a bit longer to relax with the sedation drug. I wouldn't be going under full anesthesia, just mild sedation. I told the nurse I'd got about an hour of sleep that night, so I was ready to just nap myself! haha They got me back on the table and shortly gave me the drugs. Needless to say, I was out! Pretty dang exhausted already. I do remember the doctor asking me a couple of questions just before the procedure ended, but I don't remember what she asked. Everything went really well, though.
After the procedure, they wheeled me back to my room to recover. Within just a couple of minutes they told me I could change and that my wheelchair ride over to Huntsman was ready for me. Basically, they were kicking me out within minutes of getting back to my room! Weird, but at least I was ready. At this point, Kim couldn't stay with me. Huntsman, because of the nature of their patients, still has a strict no visitor policy. So we said goodbye and I was wheeled over to the infusion center at Huntsman.
My infusion was scheduled for 12:40 pm. That was about an hour from the current time, but I had been told that they would get me in as soon as possible since I'd had the procedure and they have cancellations. The infusion center is always incredible at Huntsman. Within just a few minutes of being there, I was taken back. And, because my labs had just been done on Tuesday with my PT/INR test, I didn't have to have labs drawn. So, they started making up the drug and started my saline drip.
I learned a couple of things having the port in me...
1. It is REALLY nice to not have the tubes attached to my arm. I was free to use my arms without reservation and the tubes could be placed over my shoulder and out of the way. SO nice!
2. Don't wear a shirt you like! They really had to stretch the neck of my shirt to connect to the port. So, moving forward I'll likely just wear a quarter zip jacket that grants easier access to the port.
But, it was really nice. And I was able to finish up my infusion just a little bit after 1:00 pm, which was great! That meant we could get home earlier than we had anticipated. A big relief since it had already been a long day.
After leaving the hospital, we stopped by and visited with my grandparents and aunt for Father's Day and then we swung by my parents' house to see them for Father's Day and my mom's birthday. It was really good to visit with all of them and spend some time with them. We then headed home and got home at a good time.
It was a long day and I was exhausted. The insurance stuff certainly threw a bit of a wrench into things, but everything ultimately worked out great and the day was great. I love spending time with Kim on those long drives and was very grateful she was able to come in with me. I look forward to when she can come in with me for the infusions.
My recovery from the port placement has been great. I never had to take pain meds and haven't experienced any pain. Some slight discomfort, but other than that it's been just life as normal! I do struggle with energy a lot lately. I'm tired a lot, but other than that, I'm doing well. I am continually learning as this journey progresses and look forward to what's in store moving ahead!
Below are photos of the port procedure!
Pre-Surgery Chest. You can see how puffy my face is and how my body has changed. That's what the steroids have done to me. A lot of progress in weight lifting is gone. Definitely rough.
This is where they'll access the port for infusions, blood draws, contrast, and blood transfusions.
The full port. That whole tube ends up in my vein.
Evening #1
Evening #1
Evening #2. Some bruising associated from the surgery.
Evening #2. Some bruising from the surgery.
My next infusion is in a couple of weeks. I'll have an x-ray done on my left arm to see how it's doing a year after surgery. I was also able to transfer from the one neurologist to another, which I'm very grateful for. I'll eventually have an EEG done and then meet with him. I also have a brain MRI scheduled for early August and more CT scans in September. There's always stuff around the corner! I've been doing well from a seizure standpoint since going on this new steroid schedule. I hate the steroids. My joints, especially my knees, bother me and I've ballooned up again. I look forward to getting off of them and getting back to lifting weights. Just want my body back! Onward and upward!
#FaithOverFear
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