Where You Would Live

[danceintherain]

Hello, I'm new here.

My husband was diagnosed with POTS a little over a year ago, since then his doctors have done their best to treat him, but the doctor he is seeing now has reached the limit of his expertise (Internal Medicine). My husband is stationed in South Korea with the US Army, and his doctor, himself, and chain of command all agree that he needs to seek further treatment as soon as possible. He's managing fine under the circumstances, but there is not a cardiologist stationed on the peninsula, let alone a POTS specialist. They've started the paperwork for a medical transfer back to the States to seek treatment. This will likely occur in June or July. (hopefully we're out of here before the brunt of monsoon season reaches us)

Anyways, he's been told that he gets to choose his next assignment. This is practically unheard of in the military, so while I'm skeptical, I'm proceeding forward and looking for the most ideal situation for someone with his condition. From my research (some of which was done by reading these boards), I have determined that the best places have consistent barometric pressure, low humidity, and tend to be cooler than other places. South Korea is definitely not ideal under these parameters, and I'm hopeful that somewhere more consistent might help keep many of his symptoms at bay, at least for the time being. As I'm sure most of you realize, his POTS has been devastating to him. He has always been an active person. Cross country in high school. Maxed every PT (physical fitness in the military) test since he began training. Even if he can spend a few years less symptomatic than usual, I imagine it would help him a lot moving forward.

So, Hawaii.

From my research, it sounds ideal. The only con for us is the fact that it is far away from our families (we're both from Kansas) but even so it is closer than we are now. My question is, If you were given the opportunity to move to Hawaii as very little cost to yourself, would you do it?

I realize that everybody is different, especially with POTS, and there's no guarantee that moving to Hawaii would change his symptoms the least bit, but it does seem ideal. If any one has any negative experiences there, I'd like to hear those too. I have a few other places under consideration, but we are limited to places where there are Army bases - so no San Diego. The vast majority are on the east coast and/or in the south, which is far from ideal. I also realize that it will be, to some degree, a means to an end. The military will not keep us anywhere forever, even if my husband's condition does not disqualify him from further service, which is likely considering the nature of POTS.

If not Hawaii, where? I'm open to any suggestions.

Thank you for any input!

[McBlonde]

I would love Hawaii. I personally do better in the winds and salt air of the sea. I have no idea why. I did great in the Florida Keys even those it has high humidity. It was if it was easier to breath. I do better with the weather more or less constant than with change of seasons.

One question... Is there a POTS doctor in Hawaii?

[Frugalmama]

Maybe it would depend on the person? I spent some time in Saipan (which I think is pretty similar weather-wise to Hawaii), and the heat just about killed me. Plus air conditioning was extremely difficult to come by. I live in Winnipeg, and am in love with spring and fall Our summers are generally pretty hot, and I literally spend all my time in air conditioning....I can't even spend time in places that don't have it. Anyways, to make a long story short - do places in Hawaii have air conditioning?

[danceintherain]

I would love Hawaii. I personally do better in the winds and salt air of the sea. I have no idea why. I did great in the Florida Keys even those it has high humidity. It was if it was easier to breath. I do better with the weather more or less constant than with change of seasons.

One question... Is there a POTS doctor in Hawaii?

There is one listed on the website here - Dr. Irwin Shatz. I'm not sure if he takes our insurance, but I'm sure it would be worth it to front the money ourselves if it meant proper treatment. That's another one of the issues I've been running into - the military bases which are close to a myriad of POTS specialists are all located in less than ideal climates. ie Fort Hood, TX, Fort Benning, GA, Fort Campbell, KY/TN, Fort Meade, MD. They're almost all hot and humid for most of the year.

Maybe it would depend on the person? I spent some time in Saipan (which I think is pretty similar weather-wise to Hawaii), and the heat just about killed me. Plus air conditioning was extremely difficult to come by. I live in Winnipeg, and am in love with spring and fall Our summers are generally pretty hot, and I literally spend all my time in air conditioning....I can't even spend time in places that don't have it. Anyways, to make a long story short - do places in Hawaii have air conditioning?

Good point. Thanks! I've been looking at possible housing, and didn't think to check for A/C! We would probably be able to get window units if needed, but who knows what the working conditions will be like on Fort Shafter?

We spent a week in the Philippines in November without air conditioning, and we were all struggling towards the end of it when the wind died down. I said, "never again." I'm pretty sure I'd be kicking myself if I consciously moved somewhere and didn't have A/C every day!

This is exactly what I wanted, some dialogue! I think my husband is still a bit in denial about the whole thing. I imagine it would be hard to go from being as active as he has always been to barely being able to get out of bed in the mornings.

[bellgirl]

Moderate climate is the best...Hawaii sounds wonderful, but I agree that you need a doctor who specializes in Autonomic Disorders, so that he can get the proper treatment. I was sick way too many years before getting the proper treatment, and didn't need to be. With medication and treatment, I'm a whole lot better I was never in denial, but my doctors didn't believe me, and I knew something was terribly wrong. Just be glad that he was diagnosed!! That's a relief in itself Now he can take care of himself, and you can be a great support to him as well. I hope all goes well in June or July...

[Lemons2lemonade]

I read somewhere recently that hawaii is supposed to be the healthiest place to live.

[sue1234]

If it were me, I would choose Maryland. They may have some hot summer months, but seem to cool down early enough in the fall. PLUS, you have access to Johns Hopkins and NIH, or there are other specialists right on the east coast within traveling distance.

[lillybits]

my husband wants to move away from wi also. i have both heat and cold intollerances. so we are looking at the muontains in az or sandiego area..his family is out that way. mine is all up this way. family being close can be a blessing if they are willing to help even if it is just support or a curse if they add stress...

[yogini]

Hawaii would be too hot for me, I think. Nice that you have a choice, though.

[HopeSprings]

I think the most important thing is access to good Doctors. So few know about POTS and it gets frustrating. Not sure if there are any POTS knowledgable Doctors in Hawaii? - plus it's hot. If I could I'd buy a house across the street from Vanderbilt. I like Sue's idea - Maryland has decent weather and is a good location for Dr's in the area and to the north and south.

[danceintherain]

I was really considering Maryland, but my husband doesn't want to move there. Granted, he has a lot of the same concerns about Hawaii as he does Maryland - population, gun laws, hunting, and fishing - but I think he'd be able to set them aside for Hawaii, and not for Maryland.

Our families are...interesting. I think my Mom would be the most help to us, but we'll likely see her about the same amount anywhere we are - she's a teacher, so she would only be able to come on school breaks anyways. She told me flat out that she doesn't want us to go to Fort Riley (the closest to both our families) because it isn't close enough for her to see us every day and it is boring. We spent 5 years there while we were in college, so neither one of us is anxious to go back (especially since most of the people we know aren't there anymore), in addition to the fact that there are no POTS specialist nearby. One list I saw does have one in Omaha (about 3 hours) and another in Kansas City (about 2 hours) and while neither distance is terrible the climate in that area is fickle (tornado alley) so its hardly ideal on that account.

My husband has expressed some interest in being near his family, but I have a hard time believing that they would be any real help to us. Much of his desire comes from a need to help them, and the fact that he has been away from home for almost 18 months. The closest, as I said before, is Fort Riley, which we've already basically vetoed since it's not interesting, then there are (listed by proximity to my husband's family):

Fort Sill, OK - No POTS specialists, terrible weather, and it's a smoking state (my husband used to smoke, and I have very little tolerance for being around it, so I really want to live in an area that doesn't allow smoking indoors as much as possible)

Fort Leonard Wood, MO - No POTS specialists, weather similar to KS and OK, smoking state, and that's where he did his training, so we don't really care to go back

Fort Carson, CO - the weather seems ideal, but if he never adjusted well to the elevation, it might be a problem. Also, no POTS specialists

Fort Hood, TX - From what I've read, TX is the last place someone wants be with POTS. There are specialists in Dallas, which wouldn't be a terrible drive, but it seems counterproductive to live somewhere with a terrible climate simply because there's a POTS specialist nearby. Also a smoking state.

Fort Campbell, KY/TX - this is the other place that we're considering. It seems to be the lesser of the evils in the continental US. It's far enough north that the weather does cool down in the winter, and the humidity isn't at 100% all year round. However, it is also in the mountains. While the elevation may not be as high as Colorado Springs, the constant changes may pose a problem. Obviously, the proximity of Nashville and Vanderbilt is a huge perk, especially since its the only place I've been able to find confirmation that they take our insurance online. We would still have to get a referral from a military doctor, but it's at least more of a possibility than anywhere else I've found.

At that point, everywhere else is more than a 12 hour drive from his family, so we reasonably could get from Hawaii just as quickly, though with more expense. Also, my Dad travels a lot for business, so in an emergency situation, it would be possible for us to fly using his frequent flyer miles. We also have the option of flying Space A through the military, which though not the most convenient way to travel, it is free in most cases.

I guess my next question is Hawaii or Tennessee? Assuming they both have specialists and similar expense, which would you choose?

[yogini]

I am not sure how good Vanderbilt is for ongoing care. They do testing, but I am not sure how many people go there for regular care. Not sure about POTS docs in Hawaii.

[jangle]

Before I even opened this thread I thought to myself, "Hawaii". You can get good vitamin D year round which seems to help pots symptoms for some people. Additionally its a tropical paradise and golf courses to boot! Enjoy yourself!

[roxie]

I feel for you, this is a tough situation. my brother is a marine & they tend to have bases in yucky places don't they?

Have you thought about the base (don't remember the name) in Fayetteville, NC? Winters do cool down but summers are hot. I believe there are a few dr's in Raleigh/Durham on the dinet list. You could get testing at Vandy & follow up from one of the RTP docs, possibly? For that matter that could work for any base relatively close to TN & NC

[danceintherain]

I feel for you, this is a tough situation. my brother is a marine & they tend to have bases in yucky places don't they?

Have you thought about the base (don't remember the name) in Fayetteville, NC? Winters do cool down but summers are hot. I believe there are a few dr's in Raleigh/Durham on the dinet list. You could get testing at Vandy & follow up from one of the RTP docs, possibly? For that matter that could work for any base relatively close to TN & NC

Fort Bragg is on my list for proximity to POTS specialist, but it doesn't fair well with any of our other criteria, though I can't find a chart for average change in barometric pressure, so I'm using humidity.

Thanks for the information about Vanderbilt. He already has a diagnosis, so I'm not sure how helpful it would be for him to be seen there. We're fairly certain that POTS is the correct diagnosis, and the only reason to get rediagnosed somewhere is if we thought it would take POTS off the table and give him something that was "curable."

[bellgirl]

Duke Medical Center isn't very far from Fort Bragg in Durham, North Carolina, and they have a wonderful facility. I don't know about what they have to offer for dysautonomia, but I worked there years ago, and we had patients from Fort Bragg. Any major medical center should have the latest technology! They had a whole floor in the hospital for pediatrics, with 5 units, just for kids, back then, so I am sure there would be doctor's there for this...

[roxie]

This is a stumper. It's really hard to find the perfect place. There will always be something. I just moved from NY state where we had horrible winters to TX where the winters aren't bad but summer will obviously be a bear. There's always something somewhere

Have you thought about calling the dr in Hawaii to see if you could get a feel? Maybe the same with Vandy? Ask if the offer follow up & would look to see if there's other things than POTS going on?

[McBlonde]

Well, Vandy's is good for dx only.. Their follow up *****. Every patient is different. I do not do well in the mountains or in a dry climate. I liked the climate in Hawaii when I was there. Tropical winds always blowing keeps it nice, not hot like Florida. I felt 100% better in that climate, but like I say, everybody is different. What about trying to call the doctor there and see if you can talk to him before you make your decision?

[issie]

Go to Hawaii regularly. Which island would you be on? I think most of the doctors are in Oahu. Not sure where the base is located there. I like the north side of the island, but the city is really crowded. I know there is a base on the Big Island and that's my favorite island of all of them - but, not thinking there is a doctor there that knows about POTS. Most of the people go to Oahu for serious doctor care. That's just a hop and a skip away (by plane of course). So, allot depends on your doctor care. I feel better there than any where else I've been. It can be hot in the summer, but a window unit will take care of that. Most of the year it is heavenly. Because of us being dehydrated all the time - the humidity is wonderful, but not so soggy to drown you (like in FL). So far - my favorite place to go. Wouldn't mind living there a few years - but, think I'd get tired of being on an island for long term.

[Kellysavedbygrace]

I agree with several here that being near docs who specialize in Dysautonomia is key. It'd be a perk if you were within a reasonable distance to your family and an autonomic testing center.

Also, If you end up near Vandy it is not too far a drive to Pensacola, FL. where Dr. Charles "Randy" Thompson is. He is one of my docs and would be wonderful to follow with.

I'm glad your hubby has been diagnosed. God bless.

[danceintherain]

I tried quoting people, but it flipped out on me....

Calling the POTS specialists in various places is a good idea. His Internal doctor says that the cardiology department at Tripler (the military hospital in Hawaii) is exceptional, but obviously POTS has other factors to consider.

My husband keeps saying that he would love to live on the beach. The only experience he had with that was on our trip to the Philippines, so I think that the general environment was nice, because being unable to escape the heat was not.

We would be on Oahu. The POTS specialist I've seen listed is at the University of Hawaii. We'll probably look at places as far away from the base as possible. Being around military people (and people we cannot communicate with - though sometimes those two are mutually inclusive) all the time is a bit trying right now.

It definitely wouldn't be sustainable for us long term, but I think we would all enjoy it for a while.

As far as the heat goes, from my research it seems to not get as hot there as it does in most other places in the US. Nashville for example has average highs in the summer a few degrees higher, in addition to having higher humidity levels. Apparently, it has only ever gotten as high as 95 degrees in Honolulu. Even Fort Drum, which is the furthest north we could get, has had temperatures higher, even though the averages are lower. Obviously, I can't control the weather, but the weather in Hawaii seems to be as controlled as possible.

It is frustrating to be making this decision from here. Under normal circumstances, we make trips to all corners of the US during the year (I have family in Arizona, Pennsylvania, Georgia etc in addition to being frequent Disney goers), but the only places we've been since the onset of his symptoms have been South Korea and the Philippines. He definitely struggled on the plane to the Philippines.

Maybe we should return to the main land in order to assess his symptoms under normal circumstances, but it is difficult to bypass the possibility of living in Hawaii, especially since we will likely never get the opportunity again.

I know I sound contrary (I wanna move to Hawaii!), but I am paying attention to what you are all saying. We have hardly any experience with this disease, so we have a small frame of reference. Mine is obviously smaller than my husband's since he's the one suffering, but unfortunately he's very cryptic about his symptoms. He didn't even tell me that he's had to start taking colder showers until I made the suggestion that heat intolerance is a common problem for POTS sufferers!

[Trach]

Is there anyway you could make contact with any DINET members who live in Hawaii through the "meet others" program? Surely we have members in Hawaii (maybe not active) who may be able to give you advice about the POTS doctor.

The big factor I would find out from your husband is his heat/cold tolerance. Will he be working inside, outside, or both? The change in barometric pressure is very difficult and can make flares worse, but I think it would help to know your husband's best temperature range.

For example, I do best around 70 degrees give or take 10 degrees. I live in Texas and except for the horrid summer, 7 - 8 months of the year are fairly nice. If your husband can handle the average daily temp of Hawaii and you get a good report on the doctor I would go for it!

[danceintherain]

Is there anyway you could make contact with any DINET members who live in Hawaii through the "meet others" program? Surely we have members in Hawaii (maybe not active) who may be able to give you advice about the POTS doctor.

The big factor I would find out from your husband is his heat/cold tolerance. Will he be working inside, outside, or both? The change in barometric pressure is very difficult and can make flares worse, but I think it would help to know your husband's best temperature range.

For example, I do best around 70 degrees give or take 10 degrees. I live in Texas and except for the horrid summer, 7 - 8 months of the year are fairly nice. If your husband can handle the average daily temp of Hawaii and you get a good report on the doctor I would go for it!

I'll have to discuss it with him. He definitely has more trouble in the mornings, and has mentioned a heat intolerance vaguely. We've both been sick fairly often this winter, so it is hard to tell what is from the POTS and what is just the nasty bugs going around.

Right now, his job is both inside and out. That could change drastically at the next place. I imagine since it's a medical transfer, they will put him inside more, which he will hate. That's just me making up stuff though. The military doesn't always do things that are logical.

I'll see if I can make some contact with someone who suffers from the same symptoms in Hawaii.

[julieph85]

If it were me, I would choose Maryland. They may have some hot summer months, but seem to cool down early enough in the fall. PLUS, you have access to Johns Hopkins and NIH, or there are other specialists right on the east coast within traveling distance.

Sue, I would have to respectfully disagree on that I live in Maryland and have had zero help with my POTS. I live 10 minutes from Hopkins and was told there is no doctor there that can help me. They do absolutely nothing with dysautonomia. NIH does some research but that's it, no real patient care. There is one doctor here that knows about POTS and my experience with him has been very very bad. The care for pots here is so nonexistent that I spent $2,000 a few weeks ago traveling to Scottsdale to go to Mayo in AZ. I had such a good experience there my husband and I are moving there this fall so I can be near the clinic. Don't get me started on the other problems with Maryland..... I get why it would look appealing to an outsider but coming from someone living here, I'd have to disagree

[stacdliw]

I am not sure how good Vanderbilt is for ongoing care. They do testing, but I am not sure how many people go there for regular care. Not sure about POTS docs in Hawaii.

I was tested at Vanderbilt and do receive my ongoing care there as well in there Speciality Clinic. I live in Louisville, KY and made the trip to Nashville every 3 months immediately following the testing for medication stablilization and now I'm on a every six month schedule.