First of all please excuse my grammar because it sucks!
I am writing this post today in hopes that it will help others with their care and especially when under the care of a (RI) and (RE).
I knew from the moment I decided to get a second opinion last September and go see an RI that I would hit resistance. In fact I prepared for this to happen and so far I have not been let down. When you start researching Reproductive Immunology you will find many doctors that think there is no science, studies etc. to back the treatment chosen. In most cases such as mine you have many markers that are tested such as:
APS (Antiphospholipid syndrome is a disorder in which your immune system
mistakenly produces antibodies against certain normal proteins in your
blood. Antiphospholipid syndrome can cause blood clots to form within
your arteries or veins as well as pregnancy complications, such as
miscarriages and stillbirths
ANA ( The immune system makes an abundance of proteins called antibodies.
Antibodies are made by white blood cells and they recognize and combat
infectious organisms in the body. Sometimes these antibodies make a
mistake, identifying normal, naturally-occurring proteins in our bodies
as being "foreign" and dangerous. The antibodies that target “normal”
proteins within the nucleus of a cell are called antinuclear antibodies
(ANA). ANAs could signal the body to begin attacking itself which can
lead to autoimmune diseases, including lupus, scleroderma, Sjögren's syndrome,
polymyositis/ dermatomyositis, mixed connective tissue disease,
drug-induced lupus, and autoimmune hepatitis. A positive ANA can also be
seen in juvenile arthritis.
MTHFR ( The MTHFR gene provides instructions for
making an enzyme called methylenetetrahydrofolate reductase. This
enzyme plays a role in processing amino acids, the building blocks of
proteins. Methylenetetrahydrofolate reductase is important for a
chemical reaction involving forms of the B-vitamin folate (also called
folic acid or vitamin B9). Specifically, this enzyme converts
5,10-methylenetetrahydrofolate to 5-methyltetrahydrofolate. This
reaction is required for the multistep process that converts the amino
acid homocysteine to another amino acid, methionine. The body uses
methionine to make proteins and other important compounds.
There are many others, but these are the main things tested. Blood flow is also another huge component in re current miscarriages.
After seeing Dr. Kim in September, I was put on a specific protocol that ALL my other doctors were against and told me that they thought the treatment had absolutely NO basis. I was told by one doctor that my medications were completely uncalled for and " In her experience all reproductive immunologist through every single treatment at you at once and that is the reason for success. They don't know exactly what is helping because you are on every medication possible" Is this true? For all of you out there struggling right now, would you care if you were taking every medication possible to get pregnant and it worked? For me it doesn't really matter.
Well lets get back to my protocol by Dr. Kim.
Daily lovenox injections
IVIG (donor plasma infusions) now twice a week
A complete panel of expensive bloodwork to be sent over night every four weeks to her office. Once pregnant it is done every two weeks. The blood tests you have done while under the care of an RI is crazy. There is absolutely no other way of putting it. Of course you are on some serious medications and do need to be closely monitored.
Which brings me to today:
I went in for beta #2 this morning. I thought it was weird when one of the RN's who usually works with ivf patients called me back into the room. She started off by reading the orders from Dr. Kim and asking who exactly was managing my care? She then went on to tell me how all of these tests that Dr. K wants makes absolutely no sense and she doesn't see what exact information is to be seen out of them. They feel that I am being taken advantage of for money and hopes that is not the case. One thing I have learned after all these years of treatment is..............I ADVOCATE FOR ME. This sometimes doesn't work with what the doctors think is the best option, but I am past that point. I do like my RE office and it is filled with sweet and caring people, but after failed ivfs, and iuis, they weren't getting anything accomplished. Does this new treatment work? That is still up in the air, but at this point I will give it as much of a chance as I did treatment through my current RE. I do know this for sure, I will get the treatment and care I need. I don't care if it comes from one doctor, two doctors or more. I don't care if they don't agree with each other. I am paying all of them and they will work with me. This is one thing that you have to realize. Research, educate and always stand up for your own care. As much as the doctors want to help, they will never care as much about your health as you do. Don't be afraid to disagree, don't be afraid to get other opinions and even if they are questionable to your current care provider. Do whatever it takes to get the help you need.
Is Dr. Kims treatment plan a lot? Is it overkill? Yeah it probably is, but that is something I am willing to pay extra for and accept. At the end of the day, that is all that matters.
Beta #2 results later today. My wondfo was lighter this morning and FRER was the same as yesterday. This could go either way today.