Saturday, March 26, 2016
Skype Appointment with The Chiari Institute
Although I have had two surgeries at The Chiari Institute in New York I have never had a Skype appointment before! I sent Dr. Rekate my MRI's in January, but due to his own surgery he was unable to meet with me until March. The appointment went very, very well! Dr. Rekate is one of the nicest doctors I have ever met. He cares about not only his patient's health, but there well being overall. He wanted to ask about how both my husband and I are doing and was excited to hear the new things in our lives! He was extremely please with the progress I have made and the symptoms that I no longer have. I turned my head to look at my husband, who was sitting next to me, and he was amazed at the degree of mobility that I have! Most patients lose a significant amount of mobility after a fusion (mine is skull to the second cervical vertebra) and although I have a tiny decrease in my range of motion I do not notice it functionally at all! Overall Dr. Rekate says my MRI looks "perfect"! He does not see any signs of early arthritis, disk degeneration, or spinal cord damage. I was extremely relieved to hear that everything looked ok! Dr. Rekate also asked if he could have his research assistant contact me and discuss exactly what symptoms have gone away and which have persisted. As I have discussed in a previous post Dr. Rekate actually named a syndrome after me called Sara Syndrome. I am so grateful for the research he continues to do on complex patients like me because one day he just might find out the cause of Sara Syndrome which will help us know how to treat it better. I will send Dr. Rekate MRI's again next year as I like to have him take a look once a year to make sure everything looks ok. Until then it is nice to know that neurosurgery is not something I need to think about right now :D
Friday, March 11, 2016
Scheduling Appointments
There are lots of things going on with me medically right now!
First off I did get a Skype appointment with my neurosurgeon, which will be on March 21. I am anxiously waiting to see what he has to say about my latest cervical MRI. I trust him completely and know that I am in very good hands with him, but I am still hoping that he did not find anything that needs another surgery!
The other appointment I was waiting on was from Cleveland Clinic. My insurance company did not cover the smart pill test that the GI doctor ordered. They consider it "experimental", which we expected, but is still frustrating. I will go on April 6th back to Cleveland (a four hour trip each way from my home in Cincinnati). I am going to meet with my GI doctor as well as a general surgeon. We will be discussing if the gastric stimulator is a good fit for me, which my GI doctor has already indicated he believes it is. We will most likely schedule a surgery date during that visit, unless they find something unexpected! I am nervous for this, as I have never had abdominal surgery, but also hopeful because if the stimulator works well I may be able to enjoy eating again!
Those were the two big things I have been waiting to hear back on, so it is nice to have those things scheduled! I still have not heard if insurance will cover my TMJ treatment in network or not, so hopefully we hear back on that soon! We did already have to appeal it once, but it may be a long process before we know the final answer on that one.
I went back once to the TMJ doctor to have him evaluate how my jaw was doing with the splint and unfortunately it did not go very well. My jaw slid forward over the appliance, so it was not in the optimal position. To counter this the doctor raised the height of the splint in the back so that my jaw would not be able to slide forward. I will go back March 31 to see how this new adjustment has been working.
Lots of minor things have been happening as we settle into our new home in Cincinnati. I have been established with a new physical therapist here, which has been amazing! She is incredibly knowledgeable about EDS and has been very helpful! I have been having issues with my left hip and she and I both agree that I have a cartilage tear in my hip. I will be seeing an orthopedic surgeon on March 23 to have him evaluate my hip. He will no doubt order an MRI of the hip. If he does find a tear it will require a minor surgery to clean up the cartilage tear.
My service dog Reilly had a persistent yeast infection in his ear, but I think we have gotten that cleared up! I am relieved that he is feeling better! I depend on him for so much that it just breaks my heart when he is not feeling well. He has had a yeast infection in his ear in the past, but this one did not seem to bother him as much at least!
I got a new IV pump today, which is a huge relief for me! My pump allows me to go anywhere with my fluids. I just throw the IV bag and the pump into a backpack or in a pack my service dog carries and I can do them anywhere. Without the pump I am stuck at home for three hours, so it will be very nice to have my freedom back!
I think that is about all I have for now. LOTS of appointments coming up in the next month or so, which will hopefully help me to start feeling better!
First off I did get a Skype appointment with my neurosurgeon, which will be on March 21. I am anxiously waiting to see what he has to say about my latest cervical MRI. I trust him completely and know that I am in very good hands with him, but I am still hoping that he did not find anything that needs another surgery!
The other appointment I was waiting on was from Cleveland Clinic. My insurance company did not cover the smart pill test that the GI doctor ordered. They consider it "experimental", which we expected, but is still frustrating. I will go on April 6th back to Cleveland (a four hour trip each way from my home in Cincinnati). I am going to meet with my GI doctor as well as a general surgeon. We will be discussing if the gastric stimulator is a good fit for me, which my GI doctor has already indicated he believes it is. We will most likely schedule a surgery date during that visit, unless they find something unexpected! I am nervous for this, as I have never had abdominal surgery, but also hopeful because if the stimulator works well I may be able to enjoy eating again!
Those were the two big things I have been waiting to hear back on, so it is nice to have those things scheduled! I still have not heard if insurance will cover my TMJ treatment in network or not, so hopefully we hear back on that soon! We did already have to appeal it once, but it may be a long process before we know the final answer on that one.
I went back once to the TMJ doctor to have him evaluate how my jaw was doing with the splint and unfortunately it did not go very well. My jaw slid forward over the appliance, so it was not in the optimal position. To counter this the doctor raised the height of the splint in the back so that my jaw would not be able to slide forward. I will go back March 31 to see how this new adjustment has been working.
Lots of minor things have been happening as we settle into our new home in Cincinnati. I have been established with a new physical therapist here, which has been amazing! She is incredibly knowledgeable about EDS and has been very helpful! I have been having issues with my left hip and she and I both agree that I have a cartilage tear in my hip. I will be seeing an orthopedic surgeon on March 23 to have him evaluate my hip. He will no doubt order an MRI of the hip. If he does find a tear it will require a minor surgery to clean up the cartilage tear.
My service dog Reilly had a persistent yeast infection in his ear, but I think we have gotten that cleared up! I am relieved that he is feeling better! I depend on him for so much that it just breaks my heart when he is not feeling well. He has had a yeast infection in his ear in the past, but this one did not seem to bother him as much at least!
I got a new IV pump today, which is a huge relief for me! My pump allows me to go anywhere with my fluids. I just throw the IV bag and the pump into a backpack or in a pack my service dog carries and I can do them anywhere. Without the pump I am stuck at home for three hours, so it will be very nice to have my freedom back!
I think that is about all I have for now. LOTS of appointments coming up in the next month or so, which will hopefully help me to start feeling better!
Thursday, March 3, 2016
Port and IV FAQs
I get a ton of questions about my port and IVs, so I figured I would do a sort of FAQ on both questions I get asked frequently and questions I had before I got my port and started IV's.
Q: Why do you have a port?
A: I have a port because I have a condition called dysautonomia (or autonomic nervous system dysfunction) which causes me to have low blood pressure and low blood volume. I do IV saline to raise my blood pressure and boost blood volume.
Q: What do you use your port for?
A: I only ever do IV saline through my port at home. I do one liter of normal saline over 3 hours every other day. If I am in the hospital it can be used for medications, blood work, and to sedate me for surgeries. I never have to get a peripheral IV, which is a huge plus because my veins stink!
Q: What are some other reasons a patient may need a port?
A: One of the most common reasons a patient needs a port is for chemotherapy. Chemo is so harsh that it can not be put through smaller veins in your arms and hands, so it is placed directly into the arteries near the heart because they are larger and can withstand the harsh medication. Other patients who often have ports are patients who often need to go on IV antibiotics (such as Cystic Fibrosis patients), patients you need to receive nutrition through their veins because of various digestive diseases (Called TPN or total parenteral nutrition), and patients who are frequently having blood draws, hospital stays, or surgeries.
Q: How does a port work?
A: A port is a small metal device that is connected to a catheter (tube) that is placed into a large artery near your heart. On top of the metal device is a rubber-like pad that a needle can be placed into. The port is completely under the skin and is normally located on your upper chest. You can feel it and normally can see a bump where the port is. A needle is place through the skin into the rubber-like pad and secured in place. Then fluids, medication, TPN, chemo, or any other IV substance is distributed through the circulatory system.
Q: How is a port put in?
A: A port is normally placed through a minor surgery. You are put under twilight sedation, which means you do not have to be intubated and twilight sedation is much safer than general anesthesia. The procedure is short (about 45 minutes to an hour normally).
Q: Did it hurt when your port was placed?
A: It did not hurt exactly, but it was uncomfortable. I was very bruised (see photo below which was taken four days after my port was placed) and it was sore to raise my right arm higher than shoulder height. I couldn't brush or wash my hair for about 4 or 5 days, but after that it was not bad at all.
Q: Where is your port located?
A: My port is located in my right subclavian artery. This means my port is about 4 or 5 inches below my right collarbone and about the same distance away from my right armpit. The port is located under the lateral incision. The red dot is where the needle goes into my port.
Q: How long have you had your port and how long will you have it for?
A: I have had my port for two years (it was put in in November of 2013). I will have my port indefinitely at this point. As long as it continues working and I have no complications I will have my port. We hope that it lasts for many MANY years to come!
Q: Have you had any complications with your port?
A: A few months after I got my port we had some issues with my port tilting. It would turn so that the rubber-like "target" pad was facing my armpit instead of facing straight forward. We are still not quite sure why this happened, but thankfully it resolved itself. That is the only complication we have had thankfully!
Q: What kind of port do you have?
A: I have a single lumen (only one access point, there are some ports that have two access points so two medication can be administered at one time) Bard power port. A power port means that I can have CT contrast injected into my port. Not all ports can handle CT contrast, so make sure you talk to your doctor about what kind of port is right for you.
Q: Can you still have an MRI if you have a metal port?
A: Yep! Ports are made of a kind of metal that does not interact with the magnets in MRIs so it is safe to have an MRI while you have a port.
Q: Will a port set off a metal detector?
A: Most times the small about of metal in a port will not set off a metal detector. I have been asked to allow someone to swab my port at the airport, but I have never set off the metal detectors.
Q: Why are ports not recommended for more dysautonomia patients?
A: The largest risk associated with a port (or any central line) is sepsis. Sepsis is a potentially life threatening infection in the blood stream that can be caused by having a port since a port is put into an artery connecting to the heart. If medication, lifestyle alterations, or other means can be used to adequately manage dysautonomia those are much safer than a central line.
Q: What does access and deaccess mean?
A: Accessing is when a needle is placed through the skin and into the port. Deaccessing is when this needle is taken out. The following picture is what my port looks like when it accessed.
Q: Do you numb your port before you accesses it?
A: I personally do not numb my port. It is an option that many patients like, but I have so much scar tissue at this point that the needle stick is less painful than a shot to me.
Q: Does your port hurt or feel uncomfortable?
A: Nope! I can't feel my port at all, even when it is accessed. It causes no discomfort for me. The only time I can feel it is if I try to lay on my stomach, which I can't do because of my neck anyways!
Q: Can you go swimming, take a shower, or take a bath with your port?
A: If your port it deaccessed there are absolutely zero restrictions (after you have healed from the surgery of course!) since the port is completely under the skin. When you are accessed you cannot submerge your port in water, so you cannot take a bath or go swimming. Some people chose not to shower while they have their port accessed, but I choose to cover my entire site with a waterproof dressing while I shower.
Q: Who takes care of your port?
A: I do all of the necessary port care myself. My husband can also do all of my port care, so if I am sick or have had surgery he does it for me. I was taught by a home health care nurse how to access, deaccess, run fluids, use my pump, and flush my line. Not everyone takes care of their own port, so make sure you talk to your doctor if this is something that you are considering doing!
Q: Is it hard to access your own port?
A: There was definitely a learning curve and it took me a few months to be able to do it on the first try. Now it is just part of my routine, but it is hard to do at first!
Q: How often do you use your port?
A: I use my port for fluids every other day. This means I am accessed 5 days a week and then will reaccess it 2 days later.
Q: How do you get your supplies?
A: I have a home health care company that delivers all of my IV supplies directly to my door. We call once a month and tell them what we need more of and they have someone come deliver the next business day.
Q: Does you insurance cover your supplies?
A: I have had multiple different insurance company (Humana, Cigna, United Health Care, Blue Cross Blue Shield of Illinois, and Blue Cross Blue Shield of Minnesota) and they have all covered my supplies. I have never had an issue with any of these companies denying my supplies.
Q: Which doctor ordered your port and your supplies?
A: My port and supplies are all ordered by my autonomic neurologist. He is the one who manages my dysautonomia. He was extremely open to me doing IV fluids since we had exhausted medicine options and my quality of life was still poor.
Q: What type of needle do you use with your port?
A: You have to use a special kind of needle with a port called a huber needle. A huber needle is bent at a right angle and is specially designed to not damage your port. I personally use a 1 inch 20 gage needle. I wish I could use a smaller needle, but the smaller needle offered by my home health company is a smaller gage (width of the opening of the needle) and takes much too long to deliver my fluids.
Q: What type of maintenance do you have to do with a port?
A: The minimum maintenance that must be done with a port is to flush it with saline and/or heparin (a blood thinner) once a month. This helps to ensure that the port does not get a clot in it and stop working. This maintenance MUST be done once a month whether or not you use the port during the rest of the month. If you are using your port the needle and dressing must be changed once every week.
Q: Do you use heparin flushes with your port?
A: I do use heparin flushes after every time I use my port. The type of port I have does not require the use of heparin, but I like to use it anyways because it is one more line of protection against blood clots. If your port clots off and the clot cannot be broken up then the port has to be removed and a new one inserted in a different spot.
Q: Do you use an IV pump or gravity lines?
A: I use both. If I am going to be home I do a gravity line. This is where you set a dial to the speed you would like the IV to go, hang the bag on a pole, and then the IV drips down through a tube you connect to your port. If I am going to not be at home, like when I was working full time, I prefer to use an electronic pump. The pump is powered by a nine-volt battery and is about the size of a CD case, but much thicker. The pump can be placed in a backpack or in a pack that my service dog carries, so it can go with me wherever I go. This is nice because it gives me the freedom to not be stuck at home for three hours while I do an IV.
Q: Why do you have a port?
A: I have a port because I have a condition called dysautonomia (or autonomic nervous system dysfunction) which causes me to have low blood pressure and low blood volume. I do IV saline to raise my blood pressure and boost blood volume.
Q: What do you use your port for?
A: I only ever do IV saline through my port at home. I do one liter of normal saline over 3 hours every other day. If I am in the hospital it can be used for medications, blood work, and to sedate me for surgeries. I never have to get a peripheral IV, which is a huge plus because my veins stink!
Q: What are some other reasons a patient may need a port?
A: One of the most common reasons a patient needs a port is for chemotherapy. Chemo is so harsh that it can not be put through smaller veins in your arms and hands, so it is placed directly into the arteries near the heart because they are larger and can withstand the harsh medication. Other patients who often have ports are patients who often need to go on IV antibiotics (such as Cystic Fibrosis patients), patients you need to receive nutrition through their veins because of various digestive diseases (Called TPN or total parenteral nutrition), and patients who are frequently having blood draws, hospital stays, or surgeries.
Q: How does a port work?
A: A port is a small metal device that is connected to a catheter (tube) that is placed into a large artery near your heart. On top of the metal device is a rubber-like pad that a needle can be placed into. The port is completely under the skin and is normally located on your upper chest. You can feel it and normally can see a bump where the port is. A needle is place through the skin into the rubber-like pad and secured in place. Then fluids, medication, TPN, chemo, or any other IV substance is distributed through the circulatory system.
Q: How is a port put in?
A: A port is normally placed through a minor surgery. You are put under twilight sedation, which means you do not have to be intubated and twilight sedation is much safer than general anesthesia. The procedure is short (about 45 minutes to an hour normally).
Q: Did it hurt when your port was placed?
A: It did not hurt exactly, but it was uncomfortable. I was very bruised (see photo below which was taken four days after my port was placed) and it was sore to raise my right arm higher than shoulder height. I couldn't brush or wash my hair for about 4 or 5 days, but after that it was not bad at all.
Q: Where is your port located?
A: My port is located in my right subclavian artery. This means my port is about 4 or 5 inches below my right collarbone and about the same distance away from my right armpit. The port is located under the lateral incision. The red dot is where the needle goes into my port.
Q: How long have you had your port and how long will you have it for?
A: I have had my port for two years (it was put in in November of 2013). I will have my port indefinitely at this point. As long as it continues working and I have no complications I will have my port. We hope that it lasts for many MANY years to come!
Q: Have you had any complications with your port?
A: A few months after I got my port we had some issues with my port tilting. It would turn so that the rubber-like "target" pad was facing my armpit instead of facing straight forward. We are still not quite sure why this happened, but thankfully it resolved itself. That is the only complication we have had thankfully!
Q: What kind of port do you have?
A: I have a single lumen (only one access point, there are some ports that have two access points so two medication can be administered at one time) Bard power port. A power port means that I can have CT contrast injected into my port. Not all ports can handle CT contrast, so make sure you talk to your doctor about what kind of port is right for you.
Q: Can you still have an MRI if you have a metal port?
A: Yep! Ports are made of a kind of metal that does not interact with the magnets in MRIs so it is safe to have an MRI while you have a port.
Q: Will a port set off a metal detector?
A: Most times the small about of metal in a port will not set off a metal detector. I have been asked to allow someone to swab my port at the airport, but I have never set off the metal detectors.
Q: Why are ports not recommended for more dysautonomia patients?
A: The largest risk associated with a port (or any central line) is sepsis. Sepsis is a potentially life threatening infection in the blood stream that can be caused by having a port since a port is put into an artery connecting to the heart. If medication, lifestyle alterations, or other means can be used to adequately manage dysautonomia those are much safer than a central line.
Q: What does access and deaccess mean?
A: Accessing is when a needle is placed through the skin and into the port. Deaccessing is when this needle is taken out. The following picture is what my port looks like when it accessed.
Q: Do you numb your port before you accesses it?
A: I personally do not numb my port. It is an option that many patients like, but I have so much scar tissue at this point that the needle stick is less painful than a shot to me.
Q: Does your port hurt or feel uncomfortable?
A: Nope! I can't feel my port at all, even when it is accessed. It causes no discomfort for me. The only time I can feel it is if I try to lay on my stomach, which I can't do because of my neck anyways!
Q: Can you go swimming, take a shower, or take a bath with your port?
A: If your port it deaccessed there are absolutely zero restrictions (after you have healed from the surgery of course!) since the port is completely under the skin. When you are accessed you cannot submerge your port in water, so you cannot take a bath or go swimming. Some people chose not to shower while they have their port accessed, but I choose to cover my entire site with a waterproof dressing while I shower.
Q: Who takes care of your port?
A: I do all of the necessary port care myself. My husband can also do all of my port care, so if I am sick or have had surgery he does it for me. I was taught by a home health care nurse how to access, deaccess, run fluids, use my pump, and flush my line. Not everyone takes care of their own port, so make sure you talk to your doctor if this is something that you are considering doing!
Q: Is it hard to access your own port?
A: There was definitely a learning curve and it took me a few months to be able to do it on the first try. Now it is just part of my routine, but it is hard to do at first!
Q: How often do you use your port?
A: I use my port for fluids every other day. This means I am accessed 5 days a week and then will reaccess it 2 days later.
Q: How do you get your supplies?
A: I have a home health care company that delivers all of my IV supplies directly to my door. We call once a month and tell them what we need more of and they have someone come deliver the next business day.
Q: Does you insurance cover your supplies?
A: I have had multiple different insurance company (Humana, Cigna, United Health Care, Blue Cross Blue Shield of Illinois, and Blue Cross Blue Shield of Minnesota) and they have all covered my supplies. I have never had an issue with any of these companies denying my supplies.
Q: Which doctor ordered your port and your supplies?
A: My port and supplies are all ordered by my autonomic neurologist. He is the one who manages my dysautonomia. He was extremely open to me doing IV fluids since we had exhausted medicine options and my quality of life was still poor.
Q: What type of needle do you use with your port?
A: You have to use a special kind of needle with a port called a huber needle. A huber needle is bent at a right angle and is specially designed to not damage your port. I personally use a 1 inch 20 gage needle. I wish I could use a smaller needle, but the smaller needle offered by my home health company is a smaller gage (width of the opening of the needle) and takes much too long to deliver my fluids.
Q: What type of maintenance do you have to do with a port?
A: The minimum maintenance that must be done with a port is to flush it with saline and/or heparin (a blood thinner) once a month. This helps to ensure that the port does not get a clot in it and stop working. This maintenance MUST be done once a month whether or not you use the port during the rest of the month. If you are using your port the needle and dressing must be changed once every week.
Q: Do you use heparin flushes with your port?
A: I do use heparin flushes after every time I use my port. The type of port I have does not require the use of heparin, but I like to use it anyways because it is one more line of protection against blood clots. If your port clots off and the clot cannot be broken up then the port has to be removed and a new one inserted in a different spot.
Q: Do you use an IV pump or gravity lines?
A: I use both. If I am going to be home I do a gravity line. This is where you set a dial to the speed you would like the IV to go, hang the bag on a pole, and then the IV drips down through a tube you connect to your port. If I am going to not be at home, like when I was working full time, I prefer to use an electronic pump. The pump is powered by a nine-volt battery and is about the size of a CD case, but much thicker. The pump can be placed in a backpack or in a pack that my service dog carries, so it can go with me wherever I go. This is nice because it gives me the freedom to not be stuck at home for three hours while I do an IV.
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