What? And leave my garden??

Background: I have had ITP for 9 years. After going through the usual OMG what is it I have? And, is there life after ITP? And how many times are you going to stick that needle in me? Life has settled down. Of the 9 years I've had ITP, 8 of them have been spent in remission. Lots of drama within that one year. After using prednisone, IVIG, dexamethasone, we tried Rituxan and had a 4.5 year remission. That crash led to a second round of Rituxan and a 3.5 year remission. Which brings us up to date.

I had experienced a couple of months of strange bruises showing up. And since that is how my last remission ended, ITP was again on my mind.

My dear husband, came up to me one day and says, "We're going overseas for 3 months. We are leaving in a week."

"What and leave my garden?" :ohmy:

My garden: (Skip this if you are not interested in gardens.)
I live in North Florida. Things grow well here. (Except in August which is like a Northerner's January, except hot.) But by far the BEST time to grow things is the winter. No bugs, few diseases, no hot, stifling weather. A few frosts to make gardening exciting. We look forward to fall and winter the way a child looks forward to Christmas!

In my garden I have planted:
50 cabbages
35 cauliflowers
25 broccoli
18 rutabaga
and various amounts of:
green beans, tomatoes, lettuce, brussel sprouts, swiss chard, sweet potatoes (from summer), arugala, fuzzy burr gerkhins, ridge gourd, peas, malbar spinach, basil, celery, (I never did get the turnips in)

Now some of these will die as the season progresses, some will survive if covered. (I had tomatoes in Jan. last year) and some will grow slowly until March.

What and leave my garden?!

My husband was pretty insistent we were both going. OK OK OK, I give up. Let's book our tickets. We are leaving in 10 days. Saturday night booked our tickets.

Sunday morning woke up with blood in my mouth. (Which is how my last remission ended.) Have you ever tried to get a CBC on Sunday? I called here, I called there, I called this doctor friend and that one. Try here, try there, they said. Finally I got the answer from someone at an urgent care center. "The only way to get a CBC done on a Sunday is to go to emergency. It will cost you thousands of dollars."

If I could have gotten a CBC on Sunday I could have convinced my husband that my ITP was back. I knew. He was not convinced. I could have canceled my flight and (supposedly gotten a full refund. Congress passed a law like that in 2013.)

But I was stuck.

I waited anxiously for Monday. Called the dr office. "Sorry no room until Tuesday, we can fit you in for a CBC on Tuesday. We're real busy these days."

So on Tuesday I got to use my bright new shiny Obamacard, that hadn't been used all year with all of its deductibles still intact. And my platelet count was 11k. Huh, just like last time when I crashed.

"Ok, the doctor wants to see you, wait here."

I love my doctor. He is so kind, and concerned and takes time to listen to you. He makes you a partner in decisions. And he keeps up with the latest. I was happy that he knew that 30k is considered safe, and we don't have to push for normal. I was happy he was willing to do 2 Rituxans at the lower dosage. (Last time he wasn't willing to do that.)

But I had my new shiny Obamacard, with all of its deductibles. And it is November.

So we came up with a plan. He will give me a prescription of 200 pills of our dear friend prednisone. To be taken with a leisurely taper. I will get CBC's weekly while I am gone for 3 months and keep in contact by email. Except I didn't tell him one thing. I am going to India, rural India, as in the only city around is a 4 hour taxi drive. (Which, by the way you don't want to take after dark.) Email, no problem. CBC? problem!

And then there was the problem of the prescription. Insurance didn't want to give me 200 pills, they only gave me 100, and Walgreens didn't bother to tell me. That was another drama.

Well, as fate would have it I found the email of the Doctor running the newly built clinic in the rural area I will be in. And, "Yes, Mataji (what they called elderly ladies in India) we can give you CBC, no problem!" was his enthusiastic response.

So all systems are GO! I can only do this, because I have had ITP for a while, and we pretty much know how my body will react. I will get a CBC the day before I leave to see where we are at. I may explore having Rituxan in India. It will be a lot cheaper. I will miss my garden. All my friends will be eating my veggies. :huh:

What a story! Thanks for sharing that. It sounds like a beautiful garden!

I've also had that sort of problem with Prednisone. Since it's so cheap, I just ended up paying for it out of pocket. No fuss, no muss.

Good luck in India, I hope you have a great time!

Ananta,

Sorry you relapsed, but sounds like you have a good plan in place. Have a great time in India! You and I had rituxan at around the same time, but I relapsed much sooner than you...Feb 2013.

Dru

Ananta I enjoyed reading your posts - your garden sounds fantastic, wish I was your neighbor to help you out [and eat the wonderful produce so it won't go to waste ].

What luck to have the clinic in the rural area now - you are going to do just fine!

Our younger son was fortunate to take a trip to India with a small group from his school when we lived in Hong Kong. He enjoyed it that's for sure!

Have a wonderful time - can't wait to hear from you when you return! [are you originally from India?]

I hope you have a wonderful time on your adventure! I lived in Tallahassee for many years and yes, the weather can get crazy. I do hope your garden survives

Thanks everybody for the good wishes and all. I had my CBC done today. It was 136k! I have never reacted so fast to the dread pred. I was hoping to get into the 50's or so and just be safe. I am at 60 mg now and will be tapering to 40 on Wednesday.

Maybe it is because I gave up gluten (and anything else that might be sprayed by Monsanto's Round Up,and started taking probotics 10 days ago. I have heard that the gut and it's bacteria is very important in the immune system.

Or maybe it is just all of your good vibes. :laugh:

Sandi, yes I was just going to pay for the prednisone if it came down to that.
Dru, nice to hear from you. Are you still working at a school? How are platelets these days?
Melinda, no I'm not Indian. But I've been there lots of times.
LadyNole, So you must have gone to FSU! My daughter went there she was in the FSU's Flying High Circus. I will be checking in and see how the Rituxan goes for you. Hope it works out!

Hi Ananta

Yes, still working in school but have cut down to 3 days. Its great! My platelets are good. I ended up having a relapse of both ITP and hemolytic anemia. I had another round of rituxan and back in remission from both ITP and AIHA. It has been about a year now and Im grateful for everyday

Back in remission! Good for you Dru. Hope it lasts a long time.

Working 3 days a week sounds good if you can afford it!

Hope you con't having good numbers!

Live Reporting from India!

Ahh, life in India, always the unexpected.

I called and the person who takes blood for the CBC said he would meet me at my dwelling and take the blood from there. How convenient. (Except that our cell phone didn't have good reception, and we didn't know he was in the lobby waiting for us.) So he left. And we called again, and he came again 2 hours later.

Turns out he is a dental hygienist and only takes blood part time. Hummm. I am very sensitive to pain, and I have had some nurses really mess up a blood draw, what will he be like? Surprisingly he was VERY Good at taking the blood, with little fuss and little pain.

When will I get the results? (this was Friday morning) "oh come by the hospital on Monday afternoon." Hmm, not so convenient. I have to wait several days, and it's not so close. Well, truly it was only a mile down the road. But that means hiring a rickshaw walla ( a rickshaw driver) arguing about the price, enjoying the bumpy ride and seeing what awaited at the hospital.

I called the hospital first to ask them the hours, (lots of places are closed between 2 and 4 PM) and ask him the price of a ride. "Oh from where you are not more than 20 or 30 rupees.

On the main road, first driver said "Oh 100 rupees." So we walk on. The next fellow says 20 rupees (and of course the original driver yelled at the second for charging so little.) But we got our ride. (60 rupees to $1. right now). And of course the driver drove right past our destination. Which we had to yell STOP STOP!

Into the hospital, up to reception. The report was there, My blood taker looked at it carefully before handing it to me. What were your numbers before he asked.... and the number was (drum roll please) 20k!
Sigh
It's my fault, I admit it. I was so happy with my numbers before I left that I tapered off prednisone faster than I was supposed to. Yeah, Iwas a bad girl. (Have you ever combined jet lag and insomnia?) I was already down to 10 mg, I was supposed to be on 40mg. So I shamefacedly emailed my DR. It's a good thing he is too busy to yell at me. He just said go back to 60mg for a week. But he made the taper faster, instead of 2 weeks at each level he has me at 1week at each level. But 20k is pretty close to 30k which is "safe". So if I can be at 20k on 10 mg, then I can probably maintain safe if I taper slower.
Well we will see.
Signing off for now... (Looks like a killer frost got to my tomatoes as indicated by the weather reports, but nobody has emailed me the condition of my garden!)

PS
What was interesting was the disinterest of the rest of the staff at the hospital. In the US they would be all over you, telling you you would drop dead with numbers like that. Two people, one a nurse just looked on with mild interest, while the blood taker fellow ( iknow he has a name, just can't think of it) looked on with astonishment and they all let me walk out of the hospital without a word of protest.

I am not sure if I like that or not! :S :woohoo:

Funny story! I'm glad you're going with the flow and enjoying the scenery along the way. Good luck with Prednisone!

Not that I want to be asking for personal pictures. But if you take any share! Would love to see scenery.

Sounds like you are enjoying your trip. You said something about doctors being all over you saying your going to die. That is my main frustration with ITP don't they know we know that. They shouldn't try and scare people life goes on with ITP.

Look at you your traveling and enjoying life. Here's hoping your garden fairs well while your gone!

Doing well here in India!
After the 20k, My numbers went like this:
Dec 1 Prednisone: 60 Platelets; 312k
Dec 8 40 282k
Dec 16 20 169k
Dec 29 10 164k
Jan 6 0 238k

Yea! This is actually the first time prednisone has put me into remission! I have taken it several times, and my counts would drop as I tapered off. But surprisingly, not this time. My Dr says now I can have CBC's once a month. So Sandi, I might disagree with your recent statement that maybe pred should not be used as the first treatment. It was all I needed this time!

39 days til I can come home and see my garden. Just in time to plant my spring garden!

OK I will try some pics, but I'm not sure if it will work. The building is the local hospital. Not sure if the Rikshaws will show up.

I'm so lad to hear about the counts, Ananta! I'm glad you're having a good time.

Actually, I was taking about the newly diagnosed, not an old pro like you! I'm glad Prednisone seems to have worked....that was a quick taper. Are you off of it now completely?

Cool pics!

What great news and thanks for sharing the pictures too!