Archive

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Regular Update Emails

The 1st step towards Satya getting better :-)(26-04-13)

Hi,

How are you doing?

Now that the hospital has got back with a defined date I wanted to keep you updated about the next steps –

·         Date of surgery – 15^th of May

·         Date of admittance – 13^th of May

·         Hospital – Manipal

Satya is planning to be in Bangalore by 3^rd / 4^th of May. I will be coming in week after next most probably by 8^th of May.

Please keep us in your thoughts and send Satya the best wishes. See you around! J

The 2nd step towards Satya getting better :-)(28-05-13)

How are you doing?

Satya came home from hospital a couple of days back.

She is weary, in some pain / discomfort but in good spirits.

We have to visit the hospital every other day for the next few weeks and the doctors have advised a wait + watch policy. The next 3-4 weeks are crucial and hence request you to keep your best wishes coming her way so that her recovery goes according to plan.

The 2.5 Step in Satya getting better (02-06-13)

Hey,

Here comes the next update and this is a big one

Satya’s mom came home yesterday. She is still weak, requires physiotherapy for the next few weeks but is very excited to be back home after an ordeal of around 19 days in hospital. Docs expect her to recover fully. She suffered a mild stroke while in hospital and hence had to undergo another surgery to open the blocked arteries in the neck. We have been very lucky that she was in hospital when all this happened and now the problem has been addressed. Hopefully it is the start of her regaining her old vigor.

Satya spent a difficult last week fighting against an infection and severe pain in the stomach but her latest blood work count is good and she has had some relief yesterday – touch wood! Here’s hoping this week is going to be better. Her surgery is healing well and the sutures are planned to be removed tomorrow.

The 3rd step of Satya getting better (27-06-13)

Hi,

It is the 3rd day today when we have not been asked to make a regular trip to the hospital either for Satya or for her mom and it is a big achievement. Since the last time I sent you an update

-          Satya had a massive reaction to an antibiotic which she was administered to her for a stubborn infection she caught while in hospital.

-          She had to be taken to the Emergency and then spent another 3 days in hospital where the docs changed the medication and pumped her up with anti-convulsants.

-          Her mom had to visit the hospital once for suspected internal bleeding

-          After getting discharged from hospital Satya had to go everyday twice – morning + evening for IV infusion of another antibiotic to deal with the infection. These IV infusions were stopped on last Sunday

Right now, Satya’s mom is much better. She is doing her stuff / chores in the house. She is going walking in the apartment complex. She is helping out in home work and is generally getting back to her usual schedule.

Satya is trying to recover from the last few strenuous days / weeks and she is happy that she is not getting any IVs right now which allows for her veins to recover. She is taking oral antibiotics right now and after a few days would go for her regular checkups to see how things stand.

Me on the other hand, am very happy for the opportunity to come regularly to office for the last few days J

More updates later!

We are not out of the woods yet....(08-07-13)

Hence please continue to keep Satya in your prayers and continue to send her your best wishes!

Hi,

Since the last time I sent an update we have had two absolutely wonderful reports where the kidney values were back to normal and things were perfect. However, the last two reports have not been good.

The Docs fear a possible rejection episode or a possible reaction to some medications and have increased all the drug dosages to combat the same. They are also evaluating the possibility to do a biopsy quite seriously and thinking of doing it pretty soon. They assure that things are under control and there is nothing to worry but we are perplexed with all this uncertainty.

So again, please continue to send her your best wishes and keep us in your prayers.

Efforts are ongoing...(16-07-13)

So please do continue sending us your best wishes and prayers...

Yesterday, the biopsy report came. The good news is that the doctors didn’t find anything in the report which they believe they cannot handle. The bad news is that they have discovered a borderline early rejection and some kind of internal injury. However, for both they say it is very common in transplant cases and they respond well to medication. They were concerned about some other forms of serious rejections and fortunately they have not discovered any signs of the same. Satya will be going to hospital for a couple of days again to get IV infusions to combat the problem.

Fortunately, over the past two tests her values have again been normal and stable. Hoping this stability and normality becomes permanent now!

More time is needed! (08-08-13)

Hi,

It’s been some time since I last wrote and that’s because the frequency of tests had again intensified. Over the past 2-3 weeks the important value i.e. Creatinine has not been stable. It is fluctuating between a wide range of 1.2 and 1.55. The Doctors continue to maintain the there is nothing to worry but they also are not happy with the “yoyo creatinine” syndrome. In the meantime, we were also getting worked up as we had planned to fly back today.

However, after the last test on Tuesday, the decision was taken by the docs that we need to stay on for another 3 weeks atleast. They suspect that Satya is very sensitive to a specific medicine. As of Tuesday they have completely changed the medicine protocol and introduced a new drug etc. They want to closely monitor her now for the next few days. They are also concerned about the side effects she is having due to the steroid use and want to reduce the dosage which they have not been able to do till now due to the fear of reoccurrence of rejection.

We are thinking of getting new tickets for the 1^st week of September when the prices are more reasonable. In the meantime we dearly hope that the values will normalize and stabilize.

Looking forward to the 15^th of August – the day the face mask can be done away with!

Hope is eternal (26-08-13)

Hi,

Sorry for the lull however wanted to write back once I had something more concrete to report.

As I had mentioned in my last email that the Docs had completely revamped Satya’s medicine protocol and they wanted to see the effect. They have introduced a new drug called Everolimus and are trying to reduce Tacrograf and Myfortic. With this new approach the blood work values have stabilized over the past few weeks and the “yo yo creatinine” syndrome is under control as of now - touchwood.  This is obviously, progress. Another positive step has been that the steroid dosage has also been cut down. We are desperately hoping that the changes introduced do continue to help and that finally there is some stability which is achieved.

In the meantime, Satya has finally been given the permission to step out, meet people, go to market / shops / malls etc. as long as it is not during the peak hours and also eat out. We are very thankful for the above and have been enjoying the small but significant instances of freedom.

Hopefully, we are able to get back to our home next month.

Please continue to pray for us.

                                                "You can get onto that plane" (18-09-13)

Hi,

The Docs have finally given us the go ahead to get back home.

If all things go well we should be back by Friday morning. Satya’s values are still slightly high but they are in the acceptable range. According to the docs here it’s ok for her to now transition into the care of German physicians and also start work from next month.

We have appointments with the physicians next week and looking forward to hear what they have to say.Sometimes a fresh perspective is a good thing!

Btw, some more write-ups have gone onto http://livingwithnuo.blogspot.de/ since the last time I wrote to you. Check it out and also share on social media if you so feel like.

As always will keep you posted about how things go and we intend to keep the blog live so keep following that too. 

                                                This is the 1st Update from DE(07-10-13)

Hi,

Hope things are ok on your end….

It’s been sometime since I shared the news that we could fly back home. Coming here we were kind of overwhelmed with the amount of things which had to be sorted out. However, now after couple of weeks most of the necessary stuff has been taken care of – apartment is back as we like it; the balcony is clean; the cars are functional; provisions are in place; paperwork has been sorted and urgent papers have been taken care of etc.

On Satya’s health front there is a complicated change process which is ongoing. Though her medication protocol remains same till now the aligned processes around them are changing e.g. she had to drink 7 lts of water in Bglore and here she is asked to drink not more than 2-3 lts, dosage has changed etc. The doctors also want to get her onto a different medicine protocol which is not inline with the opinion of the doctors in Bangalore. We were prepared for this kind of uncertainty so we are dealing with it ok, I think. Satya has undergone a battery of tests – going to meet the Docs every day for the most of the week of 26^th and would also undergo another biopsy in due course of time. After the initial spike in her values the previous test on Tuesday last week was ok. Next tests are planned for this week – keeping fingers crossed. We hope that in another 2-3 weeks things should settle down. We are happy that the doctors here and the doctors in Manipal have exchanged notes and talked to each other which has given us the confidence that whatever is planned for Satya going forward is aligned – even if the protocol is changed all the tests and the conversations should lead to the right conclusion. We also believe that the tests / biopsy will give a scientific basis to define the treatment methodology.

Satya has been updating http://livingwithnuo.blogspot.de/. Check out the latest write-ups. I also intend to update the blog with a detailed assessment of the differences between the German and the Indian view as well as a pathological history of Satya’s condition since the surgery. Will let you know when I complete it.

                                                             The latest news(13-11-13)

Hi,

I didn’t write back earlier as I didn’t have anything concrete to report. Things are thorough and methodical here which obviously means that they take more time.

Finally as of Tuesday this week we have the results of the various tests and the latest biopsy (the new kidney was biopsied the 2^nd time) which was done. The good news is that all the reports were clear – the original borderline rejection has cured; no cellular rejection; no viral infection; no donor antibodies development and no toxicity. The transplanted kidney is functioning well – touch wood!

This has given the doctors here enough data points to decide on the next course of action – as of Tuesday evening Satya’s medication and dosage has been changed. We have to go for the next round of checkups next week to see how she is responding to the changes.

We are happy that the uncertainty is over and things are moving. Here is hoping that the things move in the right direction now.

Hope all ok on your end. 

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