If you're here it's probably because you, or someone near to you, has been diagnosed with that crazy thing called Klippel-Trenaunay Syndrome. While I come from a medical family, I'm a social scientist by trade and since there are better, stronger and much more fun sites to read (hellooooo Mayo!) what you'll see here is what it's like to live with KT on a daily basis.
Those of us who are caregivers to family with rare diseases have the unique experience of gaining knowledge (sometimes "TMI", as my daughter would say) about a variety of medical conditions we'd never heard of, and probably wished we hadn't, before. Some of us end up as lay experts on the condition; I've lived that personally with KT. As caregivers we deal with most of the outward aspects of it, we know what a beast this thing can be. We're dealing with the medical equivalent of Bigfoot. I can't even say Santa because almost everyone in the west has an idea of what a Santa is. Bigfoot, on the other hand, well, people have claimed to have seen it, and the rare picture exists, but nobody has really ever hung out with Bigfoot, or even walked past him in the mall come That Time of the Year. The greatest role for us then, is advocacy. By yapping to everyone who will listen to us, we can make more people aware about this crazy KT life.
As Klippel-Trenaunay is an amazingly unique condition, no two cases are the same and your mileage may vary. This is what KT looks like through our eyes. Please note that I am not a medical doctor nor am I dispensing advice. Please, please, please, if you have any ideas, questions or concerns about your or your family member's health, go directly to your medical professional for advice and treatment.
Wishing you all the best on this insane journey!
Thursday, January 1, 2015
Monday, February 18, 2013
Catching Up
Anyone dealing with a vascular malformation syndrome knows that life often goes in stops and starts and when things are going on, there's rarely a chance to rest. I'm hoping to catch up with what's been going on in the last few months, a bit at a time. An overview: a (relatively disappointing) trip to the Mayo Clinic, Rochester for an evaluation..new revelations regarding Pete's "Klippel-Trenaunay"...new information on lyphedema garments...continued work on trying to find out what kind of anemia we're dealing with...clinical depression and Klippel-Trenaunay and maybe more, if I remember it! *ting*
Sunday, August 19, 2012
Mindfulness
Living
with Klippel-Trenaunay Syndrome means that you spend a lot of your
time in the future. Upcoming check-ups and medical
appointments...accommodations for family events and holidays
(especially if you have to travel by air!)...will your loved one be
worse off next year...will you have enough money for treatment...will
life ever be calm enough to seriously focus on friends and
marriage...will your child live to adulthood...will s/he have a
“normal” childhood?
Some
of this Future Living is necessary, of course you need to keep track
of when the next appointment with the dermatologist, lymph specialist
or orthopedist is happening. And it's only wise to be well prepared
for any serious travel events. But a lot of Future Living is focusing
on things we have no control over aside from our actions today. It's
stressful, unnecessary and frankly, a waste of time. All you have any
“control” over is this very minute. You can't go back and change
the past and so many factors are involved in the future that it's
foolish to worry about it.
You
may have heard of “Mindfulness”, although it's a trendy topic
right now, the concept is thousands of years old. Mindfulness is
simply being aware, mindful, of where you are and what you are doing
this minute. It's a way of focusing your energy on the one
point in time you have control over and making sure you're where you
want to be. Instead of thinking about the e-mails you need to reply
to, focus on the dinner you're currently eating. Rather than worry
about your loved one's future, give all the love, attention and time
you can right now. Whatever you are doing, be aware of what
you're doing, how you feel and give your all to that one moment in
time. Yeah, kind of the antithesis of multitasking but try it and see
if things don't run a little smoother.
Mindfulness
also helps with emotions and feelings. Dealing with a chronic illness
means we often push our feelings of anger, frustration, hurt and
sadness as far away as possible. Not healthy and certainly not
helpful. Mindfulness allows you to accept, feel and deal with your
feelings, openly and freely. Believe it or not, if your ill loved one
is a child, this will also help him/her deal with feelings as well,
and learn to handle those feelings in a healthy manner. Bottling up
and shoving aside our emotions is what leads to those Breaking Points
where we feel lost and without any hope. Allowing the feelings to
come as they do naturally, we can handle them one-by-one and be
honest to ourselves and our children about what we're feeling. It's
not doing anyone a favor to paper over the cracks. So if you're sad,
label it, “I'm sad” and feel it, accept it and deal with it. Why
are you sad? Is it something you have any control over? What can you
do about that sadness right now? Are you holding back tears? Why?
Feeling and being honest with our feelings opens a door to our
children that allows them to be human too. Am I saying, especially in
a parent/child relationship that you have to “dump” all your
feelings out in front of your child? No! But as you practice
mindfulness you will learn how to appropriately handle those feelings
so that they won't scare yourself, let alone your child. You may
notice, as you practice mindfulness that you are borrowing worry that
you have no need to waste time on. Worrying about “what-ifs”,
“might happens” and “possiblies” is time that could be better
spent on what you can do right here, right now.
Mindfulness
can help your child learn to deal with things better. If you're on
the way to a doctor appointment and s/he is worried, identify it,
identify why s/he is feeling that way, honestly ask if there's
anything that can be done with it at that precise moment. Maybe
singing songs together at the top of your lungs helps with the worry.
Maybe stopping to have a treat before the appointment ~ feeding ducks
at the park, driving past a favorite view, stopping for a quick snack
~ would make the stress less.
As
you may be seeing, mindfulness allows you to identify your thoughts
and feelings so that you can make healthier mind choices; identify
useless thinking and focus on what is possible in the moment. It
really is a huge help if you spend too much time worrying about
things you can't control. It focuses your mind and positively gets
your body in line with a more sensible way of living. There's no end
to the use that mindfulness can play in your life if you simply open
your mind up to how you are feeling and thinking.
Mindfulness
is used in a wide variety of practices and therapies these days so
thankfully there is more information for those who are becoming aware
of the concept. There are wonderful resources if you're interested in
more in depth information about it. I heartily recommend any books by
Thich Nhat Hanh, he explains mindfulness simply and beautifully.
Mindfulness is also a component of Dialectical Behavior Therapy
(DBT), often used in treating those with Borderline Personality
Disorder (BPD), a condition wherein the diagnosed has problems
regulating impulses and emotions. Mindfulness is helpful for everyone seeking to live a happier, healthier and more in-tune life.
Wishing you peace, patience, joy and mindfulness on the journey...
Sunday, August 5, 2012
What's wrong with Janna now
Just as I was thinking about writing about how important it is for caregivers to take care of themselves I got a lesson firsthand. I injured my lateral collateral ligament ~ one of those things that sounds like it's soooo totally made up. Except, it's not. And it really hurts. Hurts like childbirth. Or breaking a bone. It's a Grade II injury which basically means it hurts. I may have mentioned that though. It also means that my knee feels like it's going to give out if I put any weight on it...so, obviously I don't. Well, didn't at first. We're working on that now as I'm healing.
The first night it felt a little off and like my knee wanted to give but it was late so I went to sleep. The next day no missing what was going on because I couldn't even stand on the sucker. And, ta-dah! An lcl injury is born. If you're the kind of person who strenuously objects to any doctor purposely causing you pain, then this injury isn't for you. You might think about choosing another type. Because to help diagnose an lcl tear, the doctor has totorture manipulate your leg to see if you have an injury and aren't just faking the screaming and inability to walk. You never saw a gorgeous example of humanity suffering through this injury in a Movie of the Week back in the 80's because this is not a pretty thing to observe.
Treatment for this level is relatively easy: bed rest, a supporting brace, painkillers, cute snuggle kitties and an amazing, wonderful, supportive family to help survive the pain. And trips to the bathroom. Believe me now: You do not want to use the bathroom with a knee injury. Especially if you are short. Probably if you're tall or medium-sized as well. Let's just make it simple and say, "stay away from knee injuries because they really suck in ways you never would have thought of". Yeah, that covers it.
I'm up on crutches now and doing pretty good, at least I can get around by myself. Sitting and standing aren't so hard. Physical therapy will start later next week as I continue to make the fabulous progress I'm making.
Here are a few sites if you want to know a little more about lcl injuries. I played a lot of volleyball and tennis in school and still never gave my ligaments the love they deserved, you don't have to make that same mistake. Love your ligaments and let them know you mean it!
Here's the basic version
A little more info here
They have a lot of information here
The moral to the story is: Caregivers take care of yourselves! Watch out for viruses and bacteria but be aware of other types of injuries as well and guard against them. Take care around the house, it's very easy to fall off a step-stool or ladder, even if you aren't that high up. Be careful of cuts and burns in the kitchen. The warnings and dangers are endless. It's so easy to become wrapped up in taking care of our loved ones that we seem to let ourselves take second place. It's not selfish to get enough sleep, eat and drink regularly, rest and watch your own health. The stronger you are, the more you have to give your loved one so please, take care of yourself too!
The first night it felt a little off and like my knee wanted to give but it was late so I went to sleep. The next day no missing what was going on because I couldn't even stand on the sucker. And, ta-dah! An lcl injury is born. If you're the kind of person who strenuously objects to any doctor purposely causing you pain, then this injury isn't for you. You might think about choosing another type. Because to help diagnose an lcl tear, the doctor has to
Treatment for this level is relatively easy: bed rest, a supporting brace, painkillers, cute snuggle kitties and an amazing, wonderful, supportive family to help survive the pain. And trips to the bathroom. Believe me now: You do not want to use the bathroom with a knee injury. Especially if you are short. Probably if you're tall or medium-sized as well. Let's just make it simple and say, "stay away from knee injuries because they really suck in ways you never would have thought of". Yeah, that covers it.
I'm up on crutches now and doing pretty good, at least I can get around by myself. Sitting and standing aren't so hard. Physical therapy will start later next week as I continue to make the fabulous progress I'm making.
Here are a few sites if you want to know a little more about lcl injuries. I played a lot of volleyball and tennis in school and still never gave my ligaments the love they deserved, you don't have to make that same mistake. Love your ligaments and let them know you mean it!
Here's the basic version
A little more info here
They have a lot of information here
The moral to the story is: Caregivers take care of yourselves! Watch out for viruses and bacteria but be aware of other types of injuries as well and guard against them. Take care around the house, it's very easy to fall off a step-stool or ladder, even if you aren't that high up. Be careful of cuts and burns in the kitchen. The warnings and dangers are endless. It's so easy to become wrapped up in taking care of our loved ones that we seem to let ourselves take second place. It's not selfish to get enough sleep, eat and drink regularly, rest and watch your own health. The stronger you are, the more you have to give your loved one so please, take care of yourself too!
Monday, July 30, 2012
C'mon, say it with me: Knowledge is my BFF
Knowledge is your friend and quite possibly your best friend in dealing with or advocating for someone with a rare disease. I hated high school science, it was so dry and boring and it didn't really convince me that it was somehow connected to my life. When we got to anatomy and physiology, even worse luck for me because I'd been scarred beyond therapy by Slim Goodbody during childhood. Maybe you were too? Maybe he's still scarring you since Slim's gotten all tech savvy and is everywhere these days...Pinterest...youtube...even facebook!
If you're the kind of person who believes that education ends with a high school or university diploma, you're probably not going to like what I'm going to say. But hey, after surviving high school and university I became a dedicated Life Learner so I get all giddy over the idea of learning something new. Hopefully, when you see how much it's going to help you, you will too.
Dealing with such a rare disease as Klippel-Trenaunay Syndrome, knowledge really is your best friend forever. You don't have to have MD after your name to understand how the body works, why certain lab tests are performed or to know that something's not quite right and it's time to call the doctor. Knowing the layout of the body and how it functions will also serve to take that "oh my gawwwwd" edge off of any scary-sounding proclamation your doctor may make and stop some of that knee-jerk denial or fear response when s/he mentions a particular surgery or procedure. Where knowledge will really shine as your BFF is when a doctor tries to blame something utterly impossible on KT. Oh, don't look at me with that shocked look. Doctors are human too, and especially with a rare condition they are often... shhhh, don't tell anyone I said this: clueless. But wait, if you are shocked then maybe it hasn't happened to you. Yet. And that's a Very Happy Thing. But yes, some doctors will say some crazy things. Sometimes to calm you down. Sometimes to get you out of the office. Sometimes because...you know I'm going to say it...they haven't a clue either and KT is just as convenient as anything else they can pull out of their hats. We've had it happen more than once, unfortunately, particularly with specialists who are usually so busy looking for something in their field they forget to widen their scope a little. Oh, and with doctors who are so used to treating common conditions that, because they've never seen anything like Klippel-Trenaunay, they don't believe that it or its accompanying baggage exist. We've had a doctor confuse a swollen lymph node with a lipoma...a nurse who'd never seen short-stretch bandages before tattle to a doctor that we'd been wrapping with ace bandages instead of wearing compression garments for his chronic venous insufficiency...I could go on but you get the idea.
It's really easy to learn the Body Basics. How? Your local library may have some good textbooks or books for Average Citizens on anatomy and physiology. And why not start right now? Here are a few links to make your brain all happy:
Innerbody ~ easy and fun, what more to say?
Get Body Smart ~ not quite as cool and lacking a bit but still a decent resource.
Cliff's Notes ~ who knew? I never used 'em when I was in school (because, well, I'm Asian and that was considered "slacking" in my family) but here Cliff and his notes are in all their glory on the web. Not as interactive nor visual as the other two sites but still some good information.
Wishing you luck on your journey...
If you're the kind of person who believes that education ends with a high school or university diploma, you're probably not going to like what I'm going to say. But hey, after surviving high school and university I became a dedicated Life Learner so I get all giddy over the idea of learning something new. Hopefully, when you see how much it's going to help you, you will too.
Dealing with such a rare disease as Klippel-Trenaunay Syndrome, knowledge really is your best friend forever. You don't have to have MD after your name to understand how the body works, why certain lab tests are performed or to know that something's not quite right and it's time to call the doctor. Knowing the layout of the body and how it functions will also serve to take that "oh my gawwwwd" edge off of any scary-sounding proclamation your doctor may make and stop some of that knee-jerk denial or fear response when s/he mentions a particular surgery or procedure. Where knowledge will really shine as your BFF is when a doctor tries to blame something utterly impossible on KT. Oh, don't look at me with that shocked look. Doctors are human too, and especially with a rare condition they are often... shhhh, don't tell anyone I said this: clueless. But wait, if you are shocked then maybe it hasn't happened to you. Yet. And that's a Very Happy Thing. But yes, some doctors will say some crazy things. Sometimes to calm you down. Sometimes to get you out of the office. Sometimes because...you know I'm going to say it...they haven't a clue either and KT is just as convenient as anything else they can pull out of their hats. We've had it happen more than once, unfortunately, particularly with specialists who are usually so busy looking for something in their field they forget to widen their scope a little. Oh, and with doctors who are so used to treating common conditions that, because they've never seen anything like Klippel-Trenaunay, they don't believe that it or its accompanying baggage exist. We've had a doctor confuse a swollen lymph node with a lipoma...a nurse who'd never seen short-stretch bandages before tattle to a doctor that we'd been wrapping with ace bandages instead of wearing compression garments for his chronic venous insufficiency...I could go on but you get the idea.
It's really easy to learn the Body Basics. How? Your local library may have some good textbooks or books for Average Citizens on anatomy and physiology. And why not start right now? Here are a few links to make your brain all happy:
Innerbody ~ easy and fun, what more to say?
Get Body Smart ~ not quite as cool and lacking a bit but still a decent resource.
Cliff's Notes ~ who knew? I never used 'em when I was in school (because, well, I'm Asian and that was considered "slacking" in my family) but here Cliff and his notes are in all their glory on the web. Not as interactive nor visual as the other two sites but still some good information.
Wishing you luck on your journey...
Friday, July 27, 2012
A few small tips
If you're dealing with Klippel-Trenaunay you're probably dealing with a variety of doctors. Unless all of the care is being undertaken by a multi-disciplinary team, you'll be seeing different doctors for different needs. Sometimes these doctors will be in close communication. More often...ummm...not so much. It's going to be up to you to make sure they're all on the same page. Yes, yes, I know, we're the Uneducated Masses, we're the ones being acted upon, not those with all the knowledge and power. Ho, ho, of course that's wrong but the key to all of this is for us to pretend to be the Uneducated Masses while we wait for them to catch up, right? So...what do you do? Here are a few small tips.
A. Get copies of all medical records. Yes, I said all of them. As many as you can. This may not be free, it may actually end up costing a bit in the end. But it will be well worth it. If at all possible, get disc copies of MRIs and scans. Seriously. Doctors and their staff are not infallible and can lose, errrrr, misplace things. Having your own copies will also keep you on top of changes and give you the opportunity to show other doctors how things are going if there are questions.
B. Take pictures. Lots of them. It will chronicle the journey. It will also help doctors and medical folks see how bad that ulcer was when you first called for the appointment. Or how bad the swelling wasn't previously. You can even take pictures of prescriptions so if the doctor questions whether you've got it right you can show him what you're talking about. Take pictures in Medical Supply stores of equipment you like or have questions about.
C. Research and keep a file. If you see information about a particular aspect of your loved one's condition that you think might work, print it out and keep a copy for the doctor. Telling him you saw something about __ online isn't very helpful and it's a special doctor who is willing to go online after hours and search for something vague. Research everything you can about Klippel-Trenaunay. Your library might offer access to medical journals as part of your library card privileges (check in the e-section along with e-books and other online and downloadable media). And if you're not sure, ask! Some universities with a medical program allow people to look at the journals in the library, some hospitals also have a medical library patients or families can access. It never hurts to ask. Start learning, keep learning and keep copies of studies or procedures that might work for you. Give a copy to your doctor and ask how feasible it might be. The more informed you are, the better care you will receive. Don't stop looking and learning. Only you will have your family member's best interest at heart. The more you know the more affective advocate you can be for him or her!
D. Speaking of...study everything you can about Patient Advocacy. The more skills and tricks you have, the better this journey will be. Learn how to petition, haggle, bargain and stand up for your loved one. You can only do this through education and practice. Check the library or online for books and blogs that help you take the first steps to patient advocacy.
Hopefully these few tips will help make your journey easier. Hopefully you're already practicing all of them already.
Wishing you luck along your journey...
A. Get copies of all medical records. Yes, I said all of them. As many as you can. This may not be free, it may actually end up costing a bit in the end. But it will be well worth it. If at all possible, get disc copies of MRIs and scans. Seriously. Doctors and their staff are not infallible and can lose, errrrr, misplace things. Having your own copies will also keep you on top of changes and give you the opportunity to show other doctors how things are going if there are questions.
B. Take pictures. Lots of them. It will chronicle the journey. It will also help doctors and medical folks see how bad that ulcer was when you first called for the appointment. Or how bad the swelling wasn't previously. You can even take pictures of prescriptions so if the doctor questions whether you've got it right you can show him what you're talking about. Take pictures in Medical Supply stores of equipment you like or have questions about.
C. Research and keep a file. If you see information about a particular aspect of your loved one's condition that you think might work, print it out and keep a copy for the doctor. Telling him you saw something about __ online isn't very helpful and it's a special doctor who is willing to go online after hours and search for something vague. Research everything you can about Klippel-Trenaunay. Your library might offer access to medical journals as part of your library card privileges (check in the e-section along with e-books and other online and downloadable media). And if you're not sure, ask! Some universities with a medical program allow people to look at the journals in the library, some hospitals also have a medical library patients or families can access. It never hurts to ask. Start learning, keep learning and keep copies of studies or procedures that might work for you. Give a copy to your doctor and ask how feasible it might be. The more informed you are, the better care you will receive. Don't stop looking and learning. Only you will have your family member's best interest at heart. The more you know the more affective advocate you can be for him or her!
D. Speaking of...study everything you can about Patient Advocacy. The more skills and tricks you have, the better this journey will be. Learn how to petition, haggle, bargain and stand up for your loved one. You can only do this through education and practice. Check the library or online for books and blogs that help you take the first steps to patient advocacy.
Hopefully these few tips will help make your journey easier. Hopefully you're already practicing all of them already.
Wishing you luck along your journey...
Thursday, July 26, 2012
Klippel-Trenaunay ~ Getting Diagnosed
With Klippel-Trenaunay, it can be pretty evident early on that something is a little different here. Maybe it's the "birthmark". Or the huge limb. This is a condition that is so incredibly individualized and so rare that two people are not likely to have the exact same experience. Some children have a series of surgeries and procedures in their first years of life, others go on as normal. Regardless of "how bad" a person has KT though, it is a condition not to be taken lightly, and an accurate diagnosis as early as possible is a good thing. Knowing exactly how far KT extends, whether it impacts internal organs and the lymphatic system, is it the relatively slow-flowing Klippel-Trenaunay or the fast-flowing Parkes-Weber Syndrome. Or maybe it's the recent "discovery" CLOVES syndrome? Of course it's only "recent" to the doctors, parents have known things are different for years. And that is something that will be one of the most difficult problems to overcome on this journey: trusting your doctors vs. trusting your instincts (and later your child's/family member's instincts). Just because a doctor doesn't know about it or doesn't believe in it doesn't mean it doesn't exist!
So, trying to find a doctor who can diagnose what you see going on isn't as easy as it seems...or should be. Because there are no tests to prove whether a person has or doesn't have KT, it's a diagnosis of exclusion and observation. And that depends on the experience of the doctor and how willing s/he is to open his/her mind.
More often than not, we have doctors asking us what's going on with Pete. Just three weeks ago a doctor seeing Pete while his regular doctor was on holiday walked in the room, looked at him and said "what is this?" When we told her she laughed and said it must be one of those things that got maybe two sentences in her medical books and she would go back and look into it. That, sadly, is more often than not the scenario. Rather than a doctor coming in and saying, "oh, you must have Klippel-Trenaunay Syndrome!" we're greeted by a doctor who takes a looooong look at Pete and then asks, "what happened to you?" Not the grounds for confidence since the doctor is supposed to be the expert in medical situations.
Getting a solid diagnosis is a good idea for many reasons. Obviously getting proper treatment would be near the top of the list. Insurance or social security might also be high on the list since this isn't going to be cheap. Sorry, but...MRIs, CT-scans, surgeries, sclerotherapy, debulking, debridement, antibiotics, wound care, compression garments, Complete Decongestive Therapy (CDT), shoe lifts, wheelchairs, house renovations (for the wheelchair), a vehicle that can carry the wheelchair, trips across the country to see someone who actually knows what's going on and more medical appointments than an average human has in a lifetime kinda gets expensive. And yes, I am definitely biased about this and am a strong supporter of any medical plan (including the ACA) that would take care of people who can't afford it since I can't imagine why anyone would willingly deny any human, especially a small child needing medical care, the treatment that can save its life or make life more bearable.
But, now the question is...how do you find the magical doctor who can look at a person and know what's going on? Ha ha ha, wouldn't that be lovely? While I don't have all the answers or even very many of them in this instance, I can try to point you in the right direction. Maybe. Hopefully. Awwww, who knows?
Start off with support groups. Okay...I don't really like support groups because there often is more of an emphasis on raising money than actually helping people. It's easy for support groups to forget that all it takes is time to help another person, money is nice but many people just want to know that they're not alone and some ideas on where to go next since they feel their world is falling apart. That's free. Yes, money to help pay for treatment for those who can't afford it is essential. Money to keep the group running is vital. But they can forget that in the early days the support group was just a bunch of individuals talking via e-mail sharing their stories and giving each other encouragement. And don't get me started on advocacy. It's a long, hard road and I think one of the first things any support group should encourage is for everyone touched by the condition to start making a lot of noise and talking about life with the condition. Which, a lot of support groups aren't organised on and subsequently don't really go anywhere in general. So no, I'm not crazy about support groups in general but maybe you can find one that works for you. Having said that, I do feel fairly confident in recommending the Klippel-Trenaunay (KT) Support Group. My husband has received a lot of support, kindness, guidance and information from them.
In the real world, here are a few good places to start...internists, vascular doctors, vascular anomoly centers, teaching/university hospitals, lymphedema therapists, vein specialists (although I wouldn't be too confident of vein clinics...but you never know) and children's hospitals. More hospitals these days have online listings for their doctors. Some doctors list their interests and specialties on their bios. Don't just look for "Klippel-Trenaunay Syndrome", look for "congenital venous malformations" and "vascular anomolies". We all know about Mayo, Boston Children's Hospital and other "major" hospitals, but you may find a gem nearby...saving you travel fare and exhaustion.
Don't be afraid to ask! Set up a day to call your potential doctor, have a list of questions. The first one should be "does Dr ___ treat Klippel-Trenaunay Syndrome?" or "Is Dr ___ familiar with something called Klippel-Trenaunay Syndrome?" if they say "yes" then ask how many patients he is currently treating or has treated with it. Don't be afraid to ask for a phone or free consult with the doctor, the worst they can say is "no". Remember, you're looking for someone who is going to be able to guide you along this lifelong path. Also remember it's going to be expensive. So why waste your money on a doctor who is going to be clueless and unable to help you? I may have mentioned, Pete was initially given the push to go to a vascular doctor by my physician, a DO family physician. He looked at Pete and said "there's something going on with you, maybe Sturge-Weber or something, I can't be sure since it's not my specialty but a guy I was in school with sure would know. Here's his name..." and within a week he'd arranged an appointment with the doctor who diagnosed Pete. It was the only time that a doctor looked at Pete and had a clue what was going on.
When you go to see the doctor, have as much information as possible. Maybe you're an emotional type, I am. It takes all the strength I possess sometimes to just not break down in tears in a doctor's office. If you have photographs showing what you mean, bring them. If you have medical records of treatment, bring copies. Write down any inconsistencies that you see in your affected loved one. If you've measured the lengths of limbs or circumference, keep those on you. Doctors currently believe that KT isn't hereditary ~ although many of us who have KT family members see vascular disease/conditions in other family members. See if you have any family history that may narrow down a diagnosis for you. Remember, KT is a diagnosis of ruling other things out and seeing what you do have. It can seem like a no-brainer but some doctors want to be very thorough.
When you're ending your visit with the doctor be sure to ask "where do we go next?" or "what's the next step?" or "when do you want to see ___ again?" The doctor may have already told you. But then again, maybe not. Be sure you are aware of what's being asked of you and what your next step is. MRI? CT-scan? Angiography or lymph testing? Believe it or not, some doctors think that by simply giving you a diagnosis they've done all they need to do. Maybe you'll be sent on to another specialist. Find out who is your go-to contact for emergencies and even just general worries.
After receiving a diagnosis, you may feel that's it but it's no time to rest. Now you're journey is really beginning! Good luck, you'll need it....
So, trying to find a doctor who can diagnose what you see going on isn't as easy as it seems...or should be. Because there are no tests to prove whether a person has or doesn't have KT, it's a diagnosis of exclusion and observation. And that depends on the experience of the doctor and how willing s/he is to open his/her mind.
More often than not, we have doctors asking us what's going on with Pete. Just three weeks ago a doctor seeing Pete while his regular doctor was on holiday walked in the room, looked at him and said "what is this?" When we told her she laughed and said it must be one of those things that got maybe two sentences in her medical books and she would go back and look into it. That, sadly, is more often than not the scenario. Rather than a doctor coming in and saying, "oh, you must have Klippel-Trenaunay Syndrome!" we're greeted by a doctor who takes a looooong look at Pete and then asks, "what happened to you?" Not the grounds for confidence since the doctor is supposed to be the expert in medical situations.
Getting a solid diagnosis is a good idea for many reasons. Obviously getting proper treatment would be near the top of the list. Insurance or social security might also be high on the list since this isn't going to be cheap. Sorry, but...MRIs, CT-scans, surgeries, sclerotherapy, debulking, debridement, antibiotics, wound care, compression garments, Complete Decongestive Therapy (CDT), shoe lifts, wheelchairs, house renovations (for the wheelchair), a vehicle that can carry the wheelchair, trips across the country to see someone who actually knows what's going on and more medical appointments than an average human has in a lifetime kinda gets expensive. And yes, I am definitely biased about this and am a strong supporter of any medical plan (including the ACA) that would take care of people who can't afford it since I can't imagine why anyone would willingly deny any human, especially a small child needing medical care, the treatment that can save its life or make life more bearable.
But, now the question is...how do you find the magical doctor who can look at a person and know what's going on? Ha ha ha, wouldn't that be lovely? While I don't have all the answers or even very many of them in this instance, I can try to point you in the right direction. Maybe. Hopefully. Awwww, who knows?
Start off with support groups. Okay...I don't really like support groups because there often is more of an emphasis on raising money than actually helping people. It's easy for support groups to forget that all it takes is time to help another person, money is nice but many people just want to know that they're not alone and some ideas on where to go next since they feel their world is falling apart. That's free. Yes, money to help pay for treatment for those who can't afford it is essential. Money to keep the group running is vital. But they can forget that in the early days the support group was just a bunch of individuals talking via e-mail sharing their stories and giving each other encouragement. And don't get me started on advocacy. It's a long, hard road and I think one of the first things any support group should encourage is for everyone touched by the condition to start making a lot of noise and talking about life with the condition. Which, a lot of support groups aren't organised on and subsequently don't really go anywhere in general. So no, I'm not crazy about support groups in general but maybe you can find one that works for you. Having said that, I do feel fairly confident in recommending the Klippel-Trenaunay (KT) Support Group. My husband has received a lot of support, kindness, guidance and information from them.
In the real world, here are a few good places to start...internists, vascular doctors, vascular anomoly centers, teaching/university hospitals, lymphedema therapists, vein specialists (although I wouldn't be too confident of vein clinics...but you never know) and children's hospitals. More hospitals these days have online listings for their doctors. Some doctors list their interests and specialties on their bios. Don't just look for "Klippel-Trenaunay Syndrome", look for "congenital venous malformations" and "vascular anomolies". We all know about Mayo, Boston Children's Hospital and other "major" hospitals, but you may find a gem nearby...saving you travel fare and exhaustion.
Don't be afraid to ask! Set up a day to call your potential doctor, have a list of questions. The first one should be "does Dr ___ treat Klippel-Trenaunay Syndrome?" or "Is Dr ___ familiar with something called Klippel-Trenaunay Syndrome?" if they say "yes" then ask how many patients he is currently treating or has treated with it. Don't be afraid to ask for a phone or free consult with the doctor, the worst they can say is "no". Remember, you're looking for someone who is going to be able to guide you along this lifelong path. Also remember it's going to be expensive. So why waste your money on a doctor who is going to be clueless and unable to help you? I may have mentioned, Pete was initially given the push to go to a vascular doctor by my physician, a DO family physician. He looked at Pete and said "there's something going on with you, maybe Sturge-Weber or something, I can't be sure since it's not my specialty but a guy I was in school with sure would know. Here's his name..." and within a week he'd arranged an appointment with the doctor who diagnosed Pete. It was the only time that a doctor looked at Pete and had a clue what was going on.
When you go to see the doctor, have as much information as possible. Maybe you're an emotional type, I am. It takes all the strength I possess sometimes to just not break down in tears in a doctor's office. If you have photographs showing what you mean, bring them. If you have medical records of treatment, bring copies. Write down any inconsistencies that you see in your affected loved one. If you've measured the lengths of limbs or circumference, keep those on you. Doctors currently believe that KT isn't hereditary ~ although many of us who have KT family members see vascular disease/conditions in other family members. See if you have any family history that may narrow down a diagnosis for you. Remember, KT is a diagnosis of ruling other things out and seeing what you do have. It can seem like a no-brainer but some doctors want to be very thorough.
When you're ending your visit with the doctor be sure to ask "where do we go next?" or "what's the next step?" or "when do you want to see ___ again?" The doctor may have already told you. But then again, maybe not. Be sure you are aware of what's being asked of you and what your next step is. MRI? CT-scan? Angiography or lymph testing? Believe it or not, some doctors think that by simply giving you a diagnosis they've done all they need to do. Maybe you'll be sent on to another specialist. Find out who is your go-to contact for emergencies and even just general worries.
After receiving a diagnosis, you may feel that's it but it's no time to rest. Now you're journey is really beginning! Good luck, you'll need it....
Subscribe to:
Posts (Atom)