I finally got my husband an appointment to see a hematologist.

[sbncmo]

My husband had to see a cardiologist a couple weeks ago because his blood pressure had been 195/108 & both numbers consistently remained over 100 for 5 days before he could see the cardiologist. He was put on a diuretic & an ultrasound was scheduled to make sure his kidney's weren't blocked by clots or kinked arteries. His kidney's were fine & he was put on an additional blood pressure med yesterday by our family doc, a week after seeing the cardio. At one point in this past week, his BP was 150/130. I couldn't believe the numbers & checked it again, but it was the same. That is scary!

Anyway, while we were talking to the cardiologist about my husband's APS, I told him that my husband hasn't seen a hematologist in 5 years, since he was diagnosed with APS & he still has clots all the time. The hematologist comes to our clinic/hospital only once a month, but the cardio said that my husband absolutely needs to see the hematologist at least once a year & he can give instructions to our family doctor for maintenance. I'm very thankful that the cardio told us that he needs to see the hematologist because I don't feel that our family doctor wants to keep my husband's INR at a high enough level & maybe that will change now. Even if he can see the hematologist just one time, it will set the guidelines for our family doc to follow from here out.

Shelia

[MaryF Administrator]

Hi there Sheila

I am glad to hear that some more appointments are coming your way, and I hope that the hematologist understands the condition, perhaps take some print outs along re Hughes and INR levels to show them, or some papers off this site, from HSF, just an idea. There certainly needs to be more communication bewtween the hematologist/rheumatologist and the GP, an awful lot of GP's do not understand, so it is important to get this team on hand, who might re educate them. The best of luck with all this, and please do keep us informed. Mary F x

[sbncmo in reply to MaryF]

Hi Mary

We have had a real struggle with our family doctor over my husband's APS. A hematologist just happened to be at the hospital for his one day a month visit when my husband's lungs were showered with PE's, resulting in 1/3 of his lungs dying. The hematologist is the one who diagnosed him with APS, but apparently he didn't tell our family doc much about controlling it. (I don't know if this is the same hematologist that he saw in March of 2007.) We have argued with her about keeping my husband's INR higher, 3-4, but she doesn't want to, even though I have taken print outs to her from Prof, Hughes. She just went & printed out something from a different medical website to support her stand for a lower INR, 2-3, & she finally settled on 2.5-3.5, but I'm not happy with that level because his INR always comes back below 3.

INR is what shows how quickly a person's blood clots, right? When he goes in to have his blood checked & the needle is pulled out, he has one tiny drop of blood. He has cut his finger almost to the bone with a razor knife & has just pushed his finger together & bled only a drop or two. That tells me that he is clotting too fast. Maybe I'm wrong. I don't want him to clot too fast or too slow. When he had a clot lodge in the artery in the top of his upper sinus cavity this past April & it ruptured, he was pouring blood out of his nose as well as swallowing it, causing him to throw up & he had clots of blood in his stomach that were up to 3" in size. Yet he still didn't bleed when they drew blood from his arm. Of course drawing blood & bleeding from a ruptured artery are two different things & the amount of blood is very different.

Anyway, with the cardiologist telling my husband to see the hematologist & to have the hematologist to send instructions to our family doctor for maintanance, I think it will be better. When she hears direction from a specialist, she will accept it better than from her patient. I'll keep you informed. And please let me know if I'm incorrect about the INR.

Shelia

[MaryF Administrator in reply to sbncmo]

Hi there Sheila, sorry about your struggles, others on here are better at INR than me, I still have more homework to do on this! as I am a plaquenil and aspirin girl! So far, I know it could change! Mary F x

ps any chance of a referral out of area!? x

[sbncmo in reply to MaryF]

Hi Mary. It seems a lot of people with APS struggle with doctors when it comes to treating it.

Unfortunately we have to stay with this clinic & hospital. Our income is so low that we receive a 90% discount on any medical care here & he has no insurance.

My husband will be seeing the specialist in about 2 1/2 weeks. Now here is something I wonder about & I may post this as a separate question on this site, but my husband's cardiologist said for him up to see a hematologist & when I went to set up the appointment, the doctor is an oncologist. Why would an oncologist (cancer specialist) treat APS? The nurses setting up the appointment had no question about the oncologist treating APS & were very familiar with APS, so apparently he does this on a regular basis, but I was a bit confused by it. Any ideas?

Shelia

[MaryF Administrator in reply to sbncmo]

Go armed with a few useful medical papers printed out from The Hughes Foundation Website, it may sway the, and no I certainly do not understand why you would be sent to an Oncologist, maybe go back and check that on the off chance it is an error, it not, again go armed with papers or books! I have done that, sent the papers followed with books etc. Sorry it is so frustrating! Best wishes and good luck. Mary F x

[sbncmo in reply to MaryF]

Thanks Mary. I'll print out information & I think I'll still ask this as a question on this site & see what others say. The more informed I am, the better.

Shelia