My first CVID treatment in India

I have had some people ask about my treatment and how it is done here versus in the USA so I thought I would give you some specifics.

My treatment is receiving IgG intravenously.  In the US I had a nurse come to my house and administer the infusion.  All the supplies would come directly to my house, the nurse would come stick me with the needle and I would sit and watch TV for the 6 hours it took to administer the medication.  I will assume you know how most hospitals work in the US for this topic.

This was my first infusion so there were some problems that hopefully will be solved after doing this a time or two but some things are just strange to me.

When we arrived no one knew I was suppose to be coming.  We had discussed it the previous week and all the doctors agreed but I did not call the hospital the day before to remind them I would be coming.  This is standard procedure it seems.  I will need to call the hospital each time the day before my treatment so they can try to reserve a single room for me and be prepared for me the next morning.  They do not have an infusion suite like most places in the USA.  I could go to the place that has an infusion suite but they only deal with rheumatoid arthritis and would want me to use IgG from India.  My doctor works both in India and for a University in the USA and does research on my condition.  She insisted on continuing with my current medication, even if that meant having it shipped from the USA.  This is a huge deal as each IgG product is different and there really is no such thing as generic IgG.  So for me it is better to be in a hospital bed with a doctor I trust than to be in a more comfortable location with doctors unfamiliar with my condition.

It took two hours from the time I arrived until the nurse tried to start the IV.  During this time Ken had to go to the cashier and put down a deposit on the estimated amount of the procedure.  They decided we needed to put down enough to cover a stay of two days even though this is an 8 hour procedure.

When the nurse went to start the IV, she also needed to draw blood for lab work.  She did not hit my vein on the first try, which is not unusual for me, so she had another nurse come in and literally hold my vein still so she could start the IV easier.  Then they took the cap off of the blood collection tube, held my arm toward the ground and let gravity do the work in getting my blood from my vein into the collection tubes.  I felt like I was taking part in a blood letting from centuries ago.

The infusion finally started and things went pretty smoothly for about 4 hours.  Once I felt comfortable I told Ken he could leave because the boys would be home from school soon.  Of course that is when the trouble started.  The infusion pump started getting errors and the nurses were not sure why.  It was doing an error code that there was air in the line when clearly there was not.  One of the nurses decided to let some of the medicine flow onto the floor(along with some of my blood) to try to clear the line.  Sometimes that is necessary but what shocked me was that they literally let it drip on the floor and did not clean it up until I asked them to an hour later.

When we were done the nurse told me I needed to go to the pay station to settle the amount due before she could give me the discharge papers.  So I had to go downstairs and wait in line to get my refund before I could get my papers.  It was all very different.  At least I now know what to expect next time.

Update

We have now been here for over a month.   We still do not have our sea shipment but we do have everything from the air shipment.  After a week of searching they finally found the missing box in storage and sent it via Fed Ex.   We are starting to settle in and get into the beginnings of a routine but it will still be awhile before we really feel settled.  Currently, the boys leave for school about 7am and arrive home between 3:30-4:30pm depending on if they have extra curricular activities that day.  Ken leaves for work around 9:30am and returns home about 5pm most days.  We all have dinner together, read a book as a family and then Ken goes to his office to make work calls for 3-4 hours while the kids do homework and get ready for bed.  We have been going out on Saturday and Sunday to shop for things we need but this weekend we did what I hope will be our new routine.  We spent Saturday at home playing games and Sunday we spent doing something fun.  This week we went to Sunday Brunch, then we went to a mall and went bowling, did some shopping, played in the game room and had dinner at Chili's.  It was a full fun filled day.  We also plan to do some weekend trip to near by attractions.

I promised a picture of where we live but right now this is all I have.  This is the view from my front bedroom window.  Ours is pretty much identical.

Here is the view from my back bedroom window.

We live just outside a village north of Bangalore.  We will try to take some pictures when people are up and the chicken and cows are around.

That is our backyard with the monkey bars and next to it is a single swing.  They are very sturdy and the boys enjoy them.

I will try to write more soon. 

Setting up your life in India

Since my last post, I have had my infusion and been sick for a few days, N has broken his laptop he uses at school (we got a new one) and Ken's mobile phone has stopped working.  On the win column, we have satellite TV, a great cook, a good driver, a passable maid, a wonderful landlord and a fantastic school.  On the when is this ever going to be done column is Ken's cell phone connection, the bank account that we supposedly have but don't have the account number or atm card after weeks,  water delivery service to be established and a few other items.  This seems to be the norm around here.  A friend just posted on Facebook that she is still waiting for her gas to get connected (all ranges here are gas)  and she moved in over a week ago.

Ken stated today that if everyone shows up to work and something actually gets accomplished it is a minor miracle.  This is not due to apathy in employees.  They all want to do a good job however since no one has a sense of time you can never count on anyone to be anywhere at a certain time.  I know those is the USA get annoyed with 4 hour windows for service calls and irate when we are told it will be sometime between 8am-7pm.  At this moment, I would pay $50 if someone would guarantee me they would come sometime between 8-7 and actually show up and complete the job in one appointment. We tried to get satellite connected and it took a week for them to show up.  When they finally showed up to install the satellite dish they had a different receiver than the one we ordered.  Instead of leaving the one they brought so we could start our service, they did everything else, checked that it was working with the other receiver and then took it with the promise of returning in the morning.  He did return but it was at 8pm the next night and even then we counted ourselves lucky.  Patience is something you must have in India or you will literally go insane.

So, when everyone tells you it will take months to get everything set up, believe them.  There will be some things that go fine but something will take forever.  Hopefully, it is something you don't care about too much.

My medical condition

As some of you know I have a rare medical condition called CVID.  I basically do not make all the antibodies I should so I have to get them from other people. This is not a disease you catch but rather a genetic condition.  If you ever sold your plasma in college, you were helping someone like me.  My treatment is getting my antibodies replaced every three weeks via an IV.  My last treatment was on August 15th and my next one is scheduled for tomorrow, September 21st.  I am feeling fatigued right now and I hope the infusion will give me my energy back.  It was only 2 years ago that I was diagnosed, however I have had the condition for many years.  One of the reasons I can say for sure I have had this since at least high school is I had a constant cough for as long as I can remember.  I lived in a house of chain smokers so I just assumed I had lung damage.  Three months after getting my first treatment, the cough disappeared.  I had basically been sick nearly continuously for over 20 years. Also, I would always need to go to the doctor after any vacation.  I would have some sort of sinus or respiratory infection when I returned.  I have just moved to the other side of the world, spent 3 days at Disney Paris, 6 days in London, one week in a hotel in Bangalore and then moved into a house and while I am exhausted, I am NOT sick.

I was scheduled to have the infusion today but there was a general strike and the kids did not go to school so we postponed one more day.  I am feeling a little nervous since this will be in a new environment.  In TX, I had the infusion in my home and a nurse came out to start the IV.  While I enjoyed being at home, the nurses who do this are not the best at starting an infusion.  They only do a few a week and my veins can be tricky.  At my last infusion in TX , the nurse tried 9 times then called for a different nurse who on the second try went straight for the vein in the elbow joint.  My infusions last about 6 hours so I was not happy about having the IV in a joint.  I am hoping that the insertion of the IV will go better at a hospital where they have people who do these multiple times a day.  The down side is, I don't know the set up and I will be in a hospital bed instead of my recliner.  We were able to bring the medication with us from the US so at least that is staying the same.  My doctor splits her time between here and doing research on my disease at a university in the USA.  She insisted that I be able to get my current medicine here and the insurance and hospital finally agreed to make sure it happened.

Many people have asked, "Why would you go to another country to live when you have this condition and all the additional complications it will bring?"  I talked to my doctor about this before I left and his response was that I have never been better able to handle this move than I am now.  If we had done this before my diagnosis, I would likely have been very, very sick all of the time.  Now that I am on proper treatment, I may be better able to handle the environment than the rest of my family.

Here is to hoping that my upcoming infusion goes wonderfully and I feel like my (new) old self in a few days. I will keep you posted.  

Cell/Mobile Phones and the FRRO process

I knew before I left how hard it is to get a mobile phone in India. What I did not realize when we first arrived is how CRITICAL it is to have a mobile phone in India.

To get a phone is a very easy.  You go to an electronics store, pick out the phone and pay for it.  Getting a sim card to activate the phone can take a minor miracle if you are a foreigner.  First, you must go to a vendor with a copy of your passport, visa, your FRRO registration letter (kind of like a green card in the USA), and two passport size photos. They will then send someone to the address on the FRRO to verify you actually reside at that address. This sounds easy enough but it is not.

To get your FRRO letter, the entire family must fill out about 20 forms then go to the government office and spend about 3-4 hours going through that process.  You literally stand in 4 different lines to complete the process.  Thankfully IBM helped with this process but still frustrating.  This typically happens between 7-14 days after your arrival.  We did it on day 5 when we were still at the hotel so we get to do this process again with the next 8 weeks to change our address to the new house.  Again all four of us must go in person on a weekday.

Once you get all the forms, you go to the vendor and pick a plan.  They will then activate your phone within 24 hours.  My phone activated properly but after 3 days and many phone calls, Ken's was still not active.  They finally had to issue him a new number to get the connection completed.  We were happy to have this complete but during our first week we were without a phone.  We tried to order a pizza from domino's but was unable to complete the order because they needed your mobile number to SMS (text) to confirm you actually ordered.  You could not give them the hotel number to call and confirm, it had to be by text.  You also have a car with a driver.  Most places do not have parking readily available so the way it typically works is the driver drops you at the door and you call him when you are ready to be picked back up.  This severely limited where we could shop during this time.  They even ask for your mobile number when you are entering various locations (private schools) as a sort of identification code.  If you tell someone you do not have a phone they do not know how to respond.  You just get a blank stare like they are in shock.  Everyone has a mobile number, even those who live in "tent villages" have a mobile phone.  The way it works here is you can get a cheap phone and then get a sim with no talk time.  You only pay for outgoing calls so people can call you but you can not call out.  It seems that a lot of maids/drivers/cooks have mobiles this way.  The thought that someone who obviously has money, would not have a phone, is absolutely unfathomable to everyone.

In conclusion, if you are coming to India plead to a friend to get a prepaid sim card for you to use for your first two weeks in country.  It will make your life so much easier.

September 11th: Air shipment arrives/my birthday

On September 11th it was my birthday.  My gift was the arrival of our very small air shipment.  We were very excited about getting it.  The Wii came, Yugioh cards, our sheets and blankets, pots and pans.  We also received two boxes that were marked for storage and were missing one of our air boxes.  It was the one that had the power converter to allow us to play the Wii, the internet phone box to let others call us, and some other electrical stuff.  I have never seen B more disappointed than when he came home, saw the Wii and his Skylanders but was told he was unable to play with the new Skylanders he purchased in London.  It was not a good scene.  On top of this we thought we were scheduled to have someone come and put in the satellite service that evening and I agreed to skip our plans to go out to dinner for my birthday and instead cook dinner for the first time in the house.  Unfortunately, we misunderstood (happens a lot), and they were coming out to do something else.  We also realized that while we packed the sheets and blanket for the boys' beds we only packed the sheets for ours.  Thankfully a friend who left India recently left us some items and among the items was a blanket just right for our bed. Thank you Vicki.   So, tomorrow I get to rehang all the curtains.

So, for my birthday, I got to unpack an air shipment that was incomplete and cook a spaghetti dinner for the family.  Can I celebrate or what?  

Going away parties

We had two parties to help us say goodbye to friends.  One for family and friends and one for co-workers.   The first was friends and family from school and the neighborhood.  The kids played, the adults talked and it was a lot of fun.  There was much discussion about the Indian Massage post and a few people were turning red.  The kids played Wii and ran around and a few watched the Olympics.  Nothing fancy, just friends hanging out.   However, what struck me most was how many of the people who came were people I had not seen in years.  I loved seeing them but thinking back I wish I would have thrown more parties to see these people more often.   I know I don't have more parties because they are a lot of work and I sometimes think that no one will come because we are all so busy.  I almost dread getting a Christmas invitation because there is so much going on at that time.  However, I think my goal in the years to come will be to have at least one party a year to celebrate something.  Maybe some of the lesser holidays no one else throws a party for and then, maybe people will not be too busy to come.  Maybe I will do Presidents day first since N likes them so much?  Help me to decide.

What holiday do you think deserves a party but rarely gets one?