Brand new here! Doctor almost killed me! Need he

Hello from Alaska! I am brand new and have so many questions!

First of all, this has been a VERY bad week! My PCP's nurse is such a jerk! He KNEW I had very low platelet count (28) and I was having a procedure at the hospital. I went in a week before and asked for a blood test and for him to order platelets. He said if the surgeon wanted it, he could ask for it himself! He never sent an order and "lost" my blood samples. I told the surgeon I needed platelets, but the lab got "busy" and they "forgot". The surgeon went ahead anyway. Fast forward an hour and I am bleeding uncontrollably. Admitted to hospital and guess what? NO O POSITIVE PLATELETS! I have to wait for them to come from Anchorage - 4 HOURS! :woohoo:

Long story short - I lost a LOT of blood and my platelets are now at 23. I HAVE to increase that, but HOW? My doctor said infusions are a waste of time because my spleen just eats them up. I can't have my spleen removed because I'll bleed to death!

We don't even HAVE a hematologist in Alaska! My care is from an internal medicine specialist and a gastroenterologist. I am thinking of traveling to the Mayo Clinic to be completely and thoroughly treated and checked out. Good idea, bad idea?

Have also heard about this product called "Blood Well" and "Immune Restore II". Are they any good? Before I plunk my money down on some snake oil scam, I'd like to know the honest opinion of someone who has used it. $120 for this ITP kit, is a heck of a lot for someone on SSDI!

Also, I have been considering alternative medicine, after having almost been killed by the doctors and hospitals here. Any thoughts on that?

Thank you SO much for any help! I am desperate to find answers!

Yours, aye

Stacey

Hi Stacey,

What is your platelet count normailly? Have you tried any treatments yet? Are there any you respond to?

I understand your frustration. Hang in there. Having a platelet count in the 20s (if you're not having surgery) might be okay. At least your doc knows that platelet transfusions are not indicated for ITP.

As far as the Mayo clinic....any good teaching hospital should have doctors who can help you, so I would not make too long of a trek for a second opinion. I live 90 miles from the Mayo clinic, but didn't feel like they'd provide anything over-and-above what I was getting from UofM doctors.

Stacey:

Have you ever treated? There are treatments available, such as Prednisone and IVIG (plus a few others).

When I did a search I came up with hematologists in Alaska.

Hi Stacy

I'd have to agree with Tamar about Mayo. I actually live in Arizona near one of the Mayo Clinic sites. I did get a second opinion when they were an option on my health plan and I wasn't happy with my hemotologist at the time. I spent hours in various waiting lines and visting with the residents, I got maybe 15 minutes with the actually hemo. And you can't schedule an appointment when it's convient for you, they call you and tell you when you can have one. I have good friends that have had great results with serious illnesses using Mayo, but I'm much happier with a local hemotologist that I have developed a partnership with.

If you feel you do have to travel, one of the PDSA advisors is in Seattle at the Puget Sound Blood Center (see "About Us" in the menu bar at the top of the page). Even better would be finding a hemotologist in Alaska who is willing to consult with any of the PDSA advisors.

Okay, a little bit of explanation about Alaska resources. Many doctors come here, stay until they make money and then leave. A doctor usually stays about two years. Most of the time, we don't even know they are here until they are gone. When we DO find out about one, either one or the other happens: either the doctor decides he wants to "help out" by being exclusive to the Native Alaskan community, which is tribal, or the waiting list is so long because he travels between the three major cities of Anchorage, Fairbanks and Juneau and may see patients only one day a week. Case in point is that my gastroenterologist (who is one of the top in his field) can only see me every 6 months.

Then there are the "others" - doctors who are running from malpractice suits and decided to make a "fresh start" in Alaska. They are unskilled, and since there is no teaching hospital or trauma center here, they practice their backwoods, 1960's medicine until someone is injured or killed. Most Alaskan families don't have the resources to bring a malpractice suit. Our local hospital is privately owned - is a hospital going to complain about itself? And since it's a local business, all "business owners" in this community stick together like glue. Since "Dr. Bob" buys his fishing tackle from "Joe's Tackle Shop", Joe isn't ABOUT to complain about Bob. Joe needs Bob and his cronies to stay in business - even if it's BAD business.

Tribal doctors are largely off-limits to non-Native Alaskans, unless we are willing to pay FULL FARE or it is a dire emergency. Insurance won't cover us in tribal hospitals. So, to get any kind of decent care, we MUST travel to the "lower 48".

Seattle probably WOULD be the best option. My gastro just mentioned Mayo, and of course EVERYONE has heard of it! But I DO have to go to Seattle in June, so it just might be beneficial to ask my gastro in February if he can recommend a good hemo in Seattle. If nothing else, maybe they can give me some answers!