I had promised myself to update this blog regularly, but dang, no excuses for laziness, and here I am with some time in hand to cope up with my laziness.
So, some 3 months have passed since I came back from the hospital. Things have been a roller coster for me, as has been for all my fellow weggie people.
My Ottolaryngologist (fancy name for ENT) was very happy with my progress during my 1st month visit. He assured me that the hole in the TM of the left ear was resolving, my nasal passages looked much better. I had been using nasal saline spray to keep it hydrated and remove crusts, but bleeding persisted all this while. I suggested me to use Nasal Rinse, and boy it was a MIRACLE! Lots of thick crusts came out of my sinuses in the first few usages. How could I have survived without it. Here's a link for the interested - http://www.neilmed.com/usa/sinusrinse.php. Anyways I was happy with my visit to the ENT. I have been visiting the ENT on a monthly candence since then.
My next visit was to the Rheumatologist (Dr. Robert F. Shapiro), a real nice guy with a lot of experience in his field. So he decides to take over all the prescriptions, and have all the specialists report to him with my condition as they diagnose it each month. Well pretty straightforward.
I was on 125mg of Cytoxan and 60mg Prednisone (Doug from the WG discussion group calls it the duo from Hell - :)), and on my first visit to Dr. Karmakar (Pulmonologist) he tapered it to 40mg. Well this was before Dr. Shapiro had taken over my prescriptions. Yeh! Making some good progress...
I had started Yoga, and walking in the first month, followed by some jogging on uphills... I now jog about a mile every day and feel real good telling my lungs "who's the boss".
In a months time I developed rashes or something that appeared like rashes all over my bottom and immidiately saw my primary physicians who thought it might be Herpes and suggested I see a dermitologist. My Rheumatologist secured me an appointment with Dr. John Kasch, another real nice guy with tonnes of experience. He diagnosed it to Herpes Zoster (Shingles) at the back and Fungus infection at the groin area. Well medications started (Valtrex for antibiotics and a whole bunch of creams - hydrocortizone, econozole, triamnicinolone) and things started to improve in about a weeks time. Had a real hard time until things quitened down a bit. It is much better now, but I still continue with the medications (minnus the valtrex).
A note on Herpes Zoster:
"Shingles" results from reactivation of the virus that causes chicken pox (Varicella zoster). Nearly everyone who is now older than five had chickenpox at one time, generally as a child. Normally, even after the rash and other symptoms of chickenpox subside, the virus that caused the sickness continues to reside in the body in a dormant state, "hiding" in the root of one of the nerves somewhere along the spine. Decades later, as the immune system wanes slightly with age (a normal part of the aging process) or when the immune system is suppressed (by medications like cyclophosphamide), the virus becomes active again.
When it reactivates, Varicella zoster usually causes a painful rash in the distribution of a single nerve, such as over one side of the face or down one arm. The rash is characterized by groups of small vesicles (blisters) sitting on a base of reddened skin, and may be extremely painful. "Shingles" is treatable with anti-viral medicines such as Acyclovir or Famcyclovir. These should be instituted as soon as possible. Narcotic pain medicines may also be necessary for several weeks. In a small minority of cases, "shingles" results in pain that can last for months. This condition is called "post-herpetic neuralgia".
Two months down the road, the 2nd ENT appointment went quite well, with a Tympanometer reading suggesting that my TM was fixable via surgery if it failed to resolve naturally. Dr. Kearns was just not very keen on performing any surgery just yet, maybe September-ish timeframe, he says.
In the meanwhile (still at around 2 months) Dr. Karmakar informed me that my last CXR readings we very encouraging, with the nodules resolving and the patch that was about 7 cms is now about 4cms. Yes! something to celebrate... although I have been still bleeding through my nose, and I still feel head cold (kind of like stuffy feeling in the head), I take this as a positive sign of improvement.
June 11th 2009, Dr. Shapiro orders a bunch of tests that included Urinalyis, CMP, CBC, ESR, IgG, IgA, IgM, Urine Culture etc. I still had traces of protine and RBC in my urine, however the sed rate (ESR) had gone down to 2mm/h (another reason to celebrate!). Hepatic Panel was normal as well.
June 15 2009 Dr. Moness ordered a bunch of other tests TSH, Lipid Panel, CBC, VitB12, CMP, VitD, 25Hydroxy, LCMSMS, Urinalysis. To our surprize the liver enzymes had shot up the roof.
- AST (SGOT) - 250 [10 - 40]
- ALT (SGPT) - 896 [9 - 60]
- Alkaline Phosphatase - 147 [40 - 115]
- Bilirubin - 0.9 [0.2 - 1.2]
I was not really feeling anything as far as my body was concerned. Dr. Moness ordered a few other tests including acetamenophene, hepatitis, Alpha1 Antytripsin in addition to the LFTs. All but LFTs were negative. This had started to get get Dr. Shapiro and Monness worried. The LFT's peaked with AST at 1500s. I was now referred to Dr. Low (GI) who had suggested that it either may be due to Bactrim or a Viral.
- AST (SGOT) - 334 [10 - 40]
- ALT (SGPT) - 1510 [9 - 60]
- Alkaline Phosphatase - 191 [40 - 115]
- Bilirubin - 1.3 [0.2 - 1.2]
Dr. Shapiro feared it was due to the pulsing he ordered on June 18th not realizing that the LFTs started to rise on June 15th which was before the pulsing. Phew! he was much relieved :) Pulsing? 1000mg of solumedrol (prednisone on fire - as if it is not hell to begin with) over IV. this allows Dr. Shapiro to taper my daily intake of Prednisone by 5mg every month. My next one was scheduled for last weekend, but due to dental issues he suggested we take care of thagt first and watch for any infection for a week.
Anyways going back to the LFTs... So Dr. Low thinks it might be viral since I had been running around car dealerships between June 11th and 15th (the time of possible infection). June 25th 2009, LFT's started declining by a small bit. We started monotorin the LFTs daily, it was certainly in a declining pattern. Nevertheless Dr. Low ordered taking off the Bactrim of my regimen. Why? cuz it is a bad drug. Hmm! Now what about protecting me from PCP (Pneumocystis Carinii Pneumonia)? This is a serious infection mainly affects the lungs, but it can also affect other organs, including the skin. However, it's much better to avoid getting PCP in the first place. I will talk to Dr. Shapiro in my next visit (tomorrow). So finaly, the last lab reading (July 09 2009) was quite encouraging...
- AST (SGOT) - 41 [10 - 40]
- ALT (SGPT) - 292 [9 - 60]
- Alkaline Phosphatase - 113 [40 - 115]
- Bilirubin - 0.5 [0.2 - 1.2]
... still awaiting results from July 16th 2009. I will update the blog when I have them.
Fortunate to have a great family support and prayers from friends, I am now enjoying my two month of sabbatical from work.
