Just A Quick Update In The Midst Of All This

I cannot believe that the last time I posted about my health was two years ago!  This is so crazy.

Long story short:  I have another tumor, possibly an autoimmune disorder, and LAM.  If you want the longer, more detailed story, keep reading.

Here is the timeline:

2018

January- CT scan intended to look for kidney stones finds an abnormality on my right kidney.  No kidney stones are found. So another CT scan is ordered. This time with contrast.

February- Second CT scan with contrast shows a tumor 6 cm in diameter, so a biopsy is ordered.  At first, the biopsy results show the tumor to be leiomyosarcoma which of course is cancer. Two days later my urologist calls to tell me the results are inconclusive.  It may not be cancer after all. Sending slides to MD Anderson.

March- MD Anderson confirms it is not cancer.  I have an angiomyolipoma, a benign tumor. The doctor gives me different options, one of which is to simply watch the tumor and do another CT scan in 5 months.  I take that option even though there is a risk of sudden hemorrhaging.

August- Another CT scan with contrast is done and the findings are:

1. Stable solid right renal mass, likely biopsy-proven angiomyolipoma. However, renal cell carcinoma can not be excluded by imaging.
2. Stable multiple pulmonary cysts may represent lymphangioleiomyomatosis (LAM).
3. Given the above findings, further evaluation is recommended to exclude possibility of tuberous sclerosis and consider brain MRI.

September- Genetic testing is done to rule out tuberous sclerosis.  I test negative. Praise God!!! The doctor highly recommends I see a pulmonary specialist to be treated for LAM.  In regards to the tumor, I decide to go ahead and take the option of an embolization. I did not want to have restrictions on traveling with my family.

October- Embolization is done on the tumor and turns out to be a lot worse than I expected!  The pain was worse than any c-section I ever had and the recovery ended up being just as long.

2019

February- Follow up with a sonogram shows the embolization was successful as the tumor is almost undetected!  Praise Jesus!!! No need to be back for an entire year. However, I now have hypertension. Never before had I had high BP, EVER!  On the day of my follow up, my BP was 189/115. I am told to see my PCP to manage that. My PCP orders a CTA scan to make sure my kidneys are functioning correctly.  Everything turns out to be fine. Medication is prescribed.

September- I decide to go on strict clean keto and before I know it, my BP meds are too strong.  The doctor prescribes half the dose.

October- BP continues to lower and the doctor lowers my dose again.  This happens twice in October.

November- BP continues to lower and the doctor has to prescribe a completely different medication that is not as strong.

December- Only taking BP meds as needed!

 

So here we are.  It is 2020. What’s new?  Several things.

In February, I went for my yearly follow up at MD Anderson.  I had a CT scan, and unfortunately, it confirmed I now have another tumor.  The doctor is 99.99% sure it is another angiomyolipoma. Another embolization is recommended.  I am also told to make sure I follow up with a pulmonary specialist in regards to the possible LAM diagnosis.  I know. A long time has passed and I have not made the time to take care of this. The good news is that my doctor is okay with me waiting to have the embolization in May or June which is great because at that time, my kids had all sorts of competitions scheduled in March, April, and the beginning of May.  My mom is having knee surgery this month. (Please pray for her) Of course, with everything canceling, I no longer have to worry about the competitions, but I do want to wait until my mom is well enough to get around in case she needs me after her knee surgery. In addition to all this, my in-laws have had procedures as well.

 

A follow up with my internist also led to additional blood work due to new symptoms.  The blood work shows my ANA is super high. It should be 1:40 and it is 1:640. This means I may have some sort of autoimmune issue.  So now I get to see a rheumatologist in addition to the pulmonary specialist. Oh, and because of the severe hair loss I have been experiencing, she also wants me to see a dermatologist about that.

 

It would be worse.  In all of this, God is still in control and will use this all together for His glory.  I pray you and yours are all doing well, and if there is any time I can ever pray for you, please don’t hesitate to let me know.

 

I promise I will not take as long writing my next post and it will not be near as long.  For now, I leave you with this: Joshua 1:9 (NIV)

9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”