POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: akcol on January 27, 2008, 07:24:41 am
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Hi everyone,
thank you for your time and help with a few HIV matters close to our heart!
my beloved husband (LTNP with HIV, and Hepatitis C since 1983, and born with Hemophilia and I (newly weds, together 12 years) would you kindly give us your experiences, thoughts and recommendations for: a world-class HIV specialist, an HIV anxiety/pain specialist, a fertility clinic that specializes in HIV serodiscordant couples; both sperm and gene washing services, and finally, a medical hypnotherapist that has been helping members of our elite community?
We need specialists who will see new patients, with us paying out of pocket to bypass my husband's health insurance shenanigans. Our visits would be once or twice a year. Accommodations would need to be adjacent the medical facility we'd be attending. My husband' s Hemophilia has severely limited his joint motion, including two ankle transplants that allow him to walk, and balance for short amounts of time, in open spaces.
We've hit the limits of our resources here, we're battle worn, and we're taking these dark matters into our own hands now. We've decided to travel to San Francisco for a week or weekend of empowering ourselves with the world class care my husband needs.
Thank you, I really value your wisdom, experience, and this support forum,
best health all,
AkCol.
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So Akcol, you're looking for specialists in the San Fran area? I don't know anything about that, but I'm sure someone else here will chime in.
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Akcol,
I just joined this site and saw a previous post of yours where nobody responded. I can't be of great service, but will give two cents. Backround - I am a very mild Hem B, HCV and HIV+. I have factor levels in the 4.5% range have always been very active in sports etc. I don't take propheltactic doses and have only had about 10 treatments in my life, always due to a skiing, soccer, etc injury - no spontaneous bleeds.
That being said, the only PI that I have had a problem with was Crixivan in 1996. I could not tolerate, as I started having pulled muscles during sports very easily. I am sure a severe hem would of been bad off by it. I quickly changed. I have since been on viracept, videx, Kaletra, sustiva, D4T and never had problems. I am now on Atripla and it is great stuff. I love the sustiva, because it makes sleeping much easier and in the 8 months on it, no known side effects. Give it a try.
I too have recently married and thanks for posting on the subjects of sperm washing, etc as I and my neg wife are just starting down this road. Not in SF, so can't help you out.
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hi everyone, who's your HIV doc?
we'll take any HIV doctor recommends from our fellow warriors.
most big cities have a world class HIV doc - we'll fly to to wherever to meet him him/her.
we suggested San Fran. in our original post asking this question - thinking it might be a mecca for related medical best care too - but we're up for wherever a plane ride can take us.
last week my husband landed in the ER, then ICU where the great docs and support staff tracked down a newly manifesting heart condition. this condition has HIV as a contributing cause; hypertension from the meds, being on these extreme meds for 10 years, stress of the whole illness, life.
these health contributors should have been discovered and treated years ago by an available care system where we are - or where we can get to.
a great doc that has a sizeable base of amazing patients, has seen trends, is familiar with unique patients' health issues, knows current medications etc.
we have 2 choices of ID docs where we live. God love them, they're committed - but what they have missed has put my husband's life in danger.
It's additionally frustrating since we're working hard to keep on top of things.
so, any docs you think we 'outta talk to?
Hep C, Hemophilia, HIV and anxiety are our healing concerns.
thanks you for your thoughts and this forum,
best health all,
akcol.
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Hey Akcol,
I really can't be of help, but wanted to say hello and I hope you and your husband are able to nail down the care you need in San Francisco.
Its a pretty tall order, but if it exists anywhere, it should probably exist in the San Francisco area.
Sending lots of positive energy your way.
HUGS,
Mark
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akcol,
I can understand your frustration, and I feel for your situation. Given the HCV, Hem and HIV issues your husband (and I) deal with, let me highly recommend choosing doctors at teaching hospitals associated with universities. The reason is quite simple, in that they see the most complex cases and are most up-to-date on research. In addition, doctors do not "cross train" in different fields to cover all three of these. So, inevitably you will need to see different doctors for all three conditions. At large teaching hospitals, this process of working together and providing referrals and information is far smoother. In addition, in any given city in the country, the biggest percentage of HIV cases will be seen at university hospitals, therefore you are assured of best in class. When you have problems and have to have a procedure done, the doctors are all under the same umbrella and better communicate. I learned this the hard way. In some ways you give up personal service by being seen at these bigger places, but this is a small price to pay for teh conveniences. As I have found the resources at these institutions are hard to refute, including emergency on call residents at all times to call when there are problems. I cannot minimize how great these systems are when there are problems at weird times. It means you can avoid going to the ER when you just need an emergency prescription. In the past 15 years I have at least 3 times avoided an ER visit when I new exactly what I needed and called the resident on call. There is an amazing amount of trust and as long as you don't want vicodin or something that can be abused, I have found they just call it in wherever I want it immediately. This helps so much when it is 3am, you are in LA for work, and have oral bleeding from a dental procedure the day before and need some Amicar to stop it. If you were flying into a city for care, this would be even more convenient, so I would make sure you ask about this. Not only do the HIV docs have on call doctors, so do all the other specialties, but I typically always call my ID resident on call because it is easier.
I have lived in various midwestern cities and have found this is definitely the best way to go. If you want to email me at my username @hotmail.com, I can provide more specific info if you want with specifics on where I live and who I see. Don't like to put this on this public site.
On your serodiscordant doctor, we have found two places that do this very near us. I just called each clinic and ask them if they do this, before even setting up an appt. We have talked to one and have an appt with another in a couple of weeks. I was told by a specialist last week that my case is a slam dunk and that any clinic that does washing would be happy to see us. So, I am pretty much price shopping now. Here in the US they only do wash then IVF, no wash then "turkey baster" approach. So, the cost is high comparatively. The experts for the "turkey baster" approach are in Italy. We may consider that if the cost ends up quite high, here but we will see. If you want the names of the clinics, just email me. If anyone knows any US clinics that do this latter method, I would love to hear about it.