Monday, October 27, 2014

Visited obgyne again

I feel unease. I feel there is a need to get a pulmonary clearance. I feel she thinks my apical lung lesion is a Koch's lesion. Btw, why did she not give me an action plan. I asked her today whether I need to go to pulmonologist , rheumatologist or immunologist first.

Tuesday, October 21, 2014

Pre implantation genetic diagnosis

About half year ago, my husband's first chromosome karyotype says he had a reciprocal translocation. But, it failed to establish that he has more than one cell line. And what does this mean? Huhuhu, I cried. I checked the net with 46,xx balanced translocation the chance of conception is less than 20 percent.  I don't want abnormal kids.

I went to consult a geneticist. She then suggested that my husband and me to have karyotyping in the state hospital. This is to rule out mosaicism for both of us. She then asked why did I not have my karyotype tested together with my husband? My naive answer was: whether my chromosome is good or bad, it will not prevent me from trying to conceive. Whew! Luckily our karyotype results were normal.

I though our genetic issue is over. I don't have to be put into maximum dose ovarian stimulation. Thank god, I thought I dont need a very aggressive therapy.

I confess that I did not share my entire autoimmunity story to my doctors. On my last consultation, my immunologist said he needs to see a psychiatrist. He complained that I am driving him crazy. Why I am feeding him one small piece of info at a time? On my last consultation with my obgyne she also commented that I should have given to her my 'decade old letter' on day1. Bad me! I just do not want to be misdiagnosed because of my biased info.

Anyway, I tried to be very open in my new IVF inquiry yesterday. I partly regret me and my big mouth. I was required to go to Taichung, just to have some basic immunologic tests. I cannot send out my blood via courier. I need to personally go to Taichung. Grrrr... Then I tried my best to explain what is ankylosing spondylitis. It is a spondyloarthropaty caused by HLA-B27 gene. My main problem is TNF-alpha.

Oopss... What HLA-B27 gene? Do they heard it right? GENE? I need PGD pre implantation genetic diagnosis. Whatever... Now, PGD sounds like a brilliant idea to me. I should thank my big mouth!

Saturday, October 18, 2014

Apical lungs lesion

What is lungs granuloma? What causes Apical lesion? Is my immune system attaching my lungs? It thought my lungs are foreign? Oh my god!

I am disturbed with my immunologist comments. My xray looks like a smoker's lungs. Anyhow, he gave me a go signal to under IVF already. He will not mind my skin reaction result of my LIT since my laboratory report shows I have 100% PRA already. TNF-alpha maybe responsible for the pustules.

Post 5th LIT consultation

I had developed pustules in the 3rd and 4th LIT. Is LIT really the ultimate treatment for my underlying immune problem? 5th LIT is a make or break. I should not exposed to any sick person- virus or bacteria. Should I be wearing a bunny suit to work? I told myself: after my 6th LIT, with or without my doctor's consent, I will push through with my IVF plan.

Sad enough, I had developed pustules again in my 5th LIT. My immunologist new task is to find out what is causing the infection. Chest X-ray, hepatitis test and pap smear were requested.

Chest X-ray: previous x-rays were PA view and lateral view. Recent test includes the apico oblique view. The impression was: I have small lesion in the apex of the lungs. This is usually not visible in the PA and lateral view. How can the radiologist conclude that it was an old lesion? It may be an active tuberculosis. Uhu Uhu Uhu... Uhu.

Hepatitis: negative

Pap smear: no result yet. The obgyne's remark was no sign of infection.

Uhu Uhu Uhu... I have tuberculosis. How can this be? I never did the apico oblique xray view of chest before. What if I had that lesion 2 years ago? But two years ago I had taken prednisone for my two bouts of uveitis. In theory, when my immune system was suppressed, it may have given the opportunity for tuberculosis to grow. I had prednisone again last year. Oh no, my tuberculosis is quite new. Uhu Uhu. Sorry, if I spread my tuberculosis germs while you were reading my blog. Uhu.

Out of no where, I found a decade old letter. My rheumatologist wrote a letter to the referring doctor. The letter mentioned I had taken several months of nsaids... and I had took methotraxate... I also mention tnf-alpha and infliximab. I says have ankylosing spondylitis. It says my rheumatologist requested and xray to serve as baseline since apical lungs lesion maybe a part of ankylosing spondylitis ... Suddenly, my immunologist changed his perception. He then commented I was driving him crazy. Why am I feeding him small fragment of info at a time?

Anyway, I thank that letter. My obgyne has also commented I should have submitted to her that letter on day1. I smiled and replied: I am stubborn. I may not believe in her until I tried.

Grr... granuloma sounds scarry.

Saturday, September 20, 2014

Post 4th LIT consultation

Yes, I remember it clear. HLA class 1 is HLA-A, HLA-B, HLA-C ... While HLA class 2 is HLA-DR, HLA-DQ.... Lost in translation. Where did I arrive at this explanation: HLA column1 is from husband and another column is from donor?  Grrrr.... Those secretaries and fellow patients were feeding me with the wrong info. I asked doctor again today: what is the LAT-M columns about. Wahaha... He said I better enroll in his immunology class. Who am I talking to? I said never mind... He asked again: who? wahahaha his secretary :(

I need to have another LIT next month. That will be my 5th LIT. Did I had another bout of infection? My immune system was very active or by coincidence? Majority of the patients just had 4 LIT prior to conception. Comparing the four session, my induration was getting bigger each LIT session. And I had developed pustules again. After the fifth LIT, I will be sending my blood abroad from testing again.

My uterine biophysical ultrasound result says my uterus echogenecity was course. Uterine NK cells were responsible for destroying the smoothness of my uterus muscles. Calcium deposits... The coarse texture affects the implantation success.

Endometrium layer blood flow... What was it again? I forgot... I was tired and sleepless. I went to the clinic at 4am... I remember the explanation was NK cell are causing the scar again. Restricting the blood flow and thinning the uterus.

How bad is the picture of my uterus? Why not just try to have a pregnancy work up? He showed me his worksheet of my induration sizes after each LIT. My immune system will prevent the implantation. Poor shel!

My impression is my Nk cell is causing scars and permanent damage to the uterus and endometrium.

Question: how bad is my uterine NK cell? How does my peripheral blood Nk cell correlate with my uterine NK cell? My peripheral blood NK cell is just boundary level with no killing power. Is there a way to test the toxicity of my uterine NK cell? Answer: it is impossible to test the uterine NK cells. Not unless I am an animal, he can cut and slice...

Tuesday, September 16, 2014

4th LIT

Tomorrow is my fourth LIT. Why I am resisting it in the past? Misdiagnosis, and blood products risks... I somewhat feel like a guinea pig.

Now, I feel my reaction code is 8-8 already, because my husband need not to donate blood tomorrow. I am quite doubtful. Last test it was just 6-4.

Friday, September 12, 2014

My uterine biophysical ultrasound

I got a profile score of 16 in the uterine biophysical ultrasound. It says the conception rate is 60%. I don't know whether I should be happy or not. After getting the report, I smiled at the sonologist and thanked him. He then asked whether I have tried ivf. Why did he asked that question? I can't help but to think that 60% is not a good score. Whatever.... I guess my score will improve by blood thinners.

I also had my LAT-M done today. Let's see.