Read that fine print!!

Most of us take Life Insurance policies and other such covers when we are younger, healthier...and then on just pay the premiums and keep them alive.
Given the expenses we had to incur without health insurance coverage, we were forced to take a closer look at all these policies I had.

By accident V found that one of my Life Insurance policies had a rider/add on of critical illness and Kidney Disease was one of the listed illnesses. The only catch was, he read this after the transplant was done. We checked with the provider if we could still claim this and the answer was "yes."

Given how stingy insurance companies are with claims, we were quite sceptical and were fully prepared for our claim to be rejected. With a request of one additional document from the hospital and all my medical reports, to our surprise - lo and behold, they actually approved it and we got the due money. Given it was just a rider, the amount isn't a whole lot. Its just a fraction of the cost, but is better than nothing.

Talk of counting blessings eh?

Lesson learnt: Find some means to remember what each of your policies entitle.

Setting the benchmark

Before we proceeded with the transplant we were informed that for Manipal Hospital Bangalore this would be a new frontier. The oldest donor they had worked with before was 65 yrs and with my mother-in-law who is 69 yrs old they were not sure. The other possible option was my mother who is 62 yrs old and between the two they prefered my mother-in-law even though she was older due to the fact that the HLA match was better. Actually the match was 4/6 and is considered very good. Even before the surgery they informed us due to this "marginal donor" condition we should be prepared for the following complications -

1. Suturing could be a problem due to the calcification of the arteries. This is a normal condition which happens as a person ages. 
2. The creatinine might settle at a higher value of around 1.8 due to it being an aged kidney needed to function for a younger body

We all decided to proceed seeking divine grace and because this is the best option available. Thankfully the surgery was successful without any complications.

Recently, I asked our physician that now they have had the experience with a 69 yrs old donor what is their learning - are they proceeding with doing other "marginal donor" transplants or are they reverting back to slightly younger donors. The answer was that the hospital has already gone ahead and done a transplant with a 70 yrs old donor. They are also actively considering 3 other cases which are above 65 yrs.

We felt good hearing this. Having undergone this process we feel that we have contributed in helping few other people as the hospital seems to be more confident in considering slighty older donors than before. Worldwide statistics seem to suggest that a younger donor is always a good option but in case a living, related donor with a good HLA match is available then even if the donor is aged the prognosis is comparable to a younger, unrelated donor.

I can MEET my friends and family members again - face to face :)

Having completed 3 months of my transplant, I am now officially allowed to have visitors over and also go out and meet people - as long as I am not out at the time when places are too crowded; as long as its a clean place; as long as I stick to eating, drinking hot, cooked stuff...most of the time I did keep my mask on even though I am now allowed to be without it. Enjoying the new found freedom.

With Deepak and Sandy at Labs, Bangalore...so many years hence, nice to still retain that bond.

Exploring the quaint coffee shops of Indiranagar (those that allow for some fresh air, outside seating) with Rana and Kusum is always fun. Its a new place each time but each time, the time is never enough. This time Sid decided to join us too :)

Muktha, Mrudula and I braved the crazy Bangalore traffic and rain to catch up and bond over gossip and our lives in general :)

 

If 'situations' were different, WE would have all made that trip to Ladakh. Indeed!! Lets hope we can make it some day.
With, Deppe, Manjari. Watching the antics of Sid can be such an endless entertainment :D

Finally, we managed to synch our dates and  times to see Ankura and Abhi's cute apartment.
We had so much to chat about that I forgot to take a pic of all of us together in their house.
"See you in Germany," said she. We'll certainly look forward to that. Thanks for deck of movie CDs :D

With some friends you can just pick up right where you left - even if that was a couple of years ago...

Was awesome catching up with Radhika, one of my first friends in Bangalore. It's great to have you in my life :)  



I so dislike this steroids fed puffed up face of mine :(



 

After several years, my uncle came visiting us today to check on my mom and my health. He had been checking on us regularly over the phone. Given his own age, he took the trouble to come over...it was nice to have him over. Glad to have the blessings of elders...to get us all through this phase.

Spent a lovely afternoon over coffee with Jaishree, in Bangalore. Thanks for coming over from Delhi Jai - even though it was a brief meeting, had a wonderful time. Feel blessed to have friends like you in my life.

3rd (month) Anniversary

Today Nuo completes 3 months in its new place.
Has it settled in?
Don't know yet. It's still in the process I guess.

Completing 3 months is a milestone for most transplant patients. I now have lesser restrictions. I can now meet people!!!! I can start visiting some public places but during off-peak times so there are not too many people around, I can include more things into the 'what can I eat' list, my silverware and plates do not need to be sterilised anymore as long as they are kept clean.
Most of all, I do not need to wear my mask anymore (as long as I'm in a relatively clean environment).

I need to slowly and steadily get Nuo to experience normalities of my life.

"I'm happy to have you in my life - I hope we share many more such anniversaries in future."

Mood swings of the LAB

When the Creatinine level shows low and well within the normal range, our happiness is quite evident to all. (So is our displeasure and disappointment when they values are higher...)
Over the course of all these tests, it has happened on many occasions that we learnt later from the doctors that the LAB was having mood swings.
Incidentally, the day my Creatinine was low, it was on the lower side for most patients - so something was wrong at the lab that day. The day my Creatinine was higher, it was on the higher side for most patients :D

Can there be some weather forecast like thing to know how the LAB was functioning a certain day so I can set my expectations right?

No wonder the doctors rarely have much of a reaction to the Creatinine value of a certain day - because its the TREND that matters to them. This fixation to the value of Creatinine seems to be this naïve thing patients do.

Today, as I awaited the value of Certican in my blood, I receive the Tacrolimus value instead. The LAB assumed the Tacrolimus value needed to be checked as that's what's been checked several times before - despite clear written instructions to check Certican levels. Phew!
Now they are going to run another test and get back to me about Certican levels by tomorrow...this decides future course of action with my medications!!!

Well!! Things happen - dealing with it all as it happens and watch the fun as an observer to my life.

Story of the side effects

Need - Immunosupression protocol
Medicine - Cellcept 750-0-750 mg
Effect - S developed excessive bloating. She had an upset stomach, was vomiting and in the end was completely dehydrated. Slowly she developed severe stomach ache. Creatinine shot up to 1.9. She had to get IV fluids inserted for a day and then stabilized. Endoscopy was also done to rule out gastro.
Substitute - Myfortic. S has adjusted well to this drug

Need - Immunosuppression protocol
Medicine - Wysolone 30/25/20/15 mg
Effect - S has got a lot of swelling on her face. She almost looks like an overfed child. She also has facial hair growth which was not there before. She has written about the emotional and psychological effect in another note.
Substitute - None. She has to bear it. The opinion is that these effects are reversible and will go away over a period of time as the dosage is reduced below 10 mg

Need - Immunosuppression protocol
Medicine - Tacrograf 1.5-0-1.0 mg
Effect - S had developed hypertension which she has never had. Even when the kidney functions were not optimum and deteriorating her BP was normal and under control. However that is not the case as of now. BP levels are between 124-132 / 84-92. She was originally taking Dilzem 60mg-0-0 and Selokon XL 25-0-0 to control the BP. Right now she has been advised to stop Dilzem and continue with the latter.
The other issue is that the doctors suspect that Tac is causing excessive toxicity which is preventing the creatinine levels from coming down. In order to address this, another drug has been introduced called Everolimus 0.25-0-0.25 mg and Tacrograf is being steadily cut down. Since the time Everolimus has been added, S has been complaining of some vertigo problems but the doctors believe it is not serious and should settle down in a couple of days. Tac will not be completely removed due to the rejection episode but after sometime Myfortic could be reduced and ultimately stopped. 
Substitute - None.

Need - Treat UTI
Medicine - IV Ertapenam 1gm once a day
Effect - Caused a massive seizure within a few hours of administration. As soon as it was injected in the evening S was uncomfortable, spent a disturbed night and early morning had a seizure. The drug doesn't suit patients with central nervous disorders and should not be given to people with low seizure threshold levels.
Substitute- IV Meropenam 1 gm twice a day. This is a safer drug and very effective for UTI

Celebrations?

Our 4th wedding anniversary - i was taken in an ambulance to Uniklinikum, Heidelberg. Thus began a new journey...
Christmas, New Year - spent seeking opinions in different hospitals in Bangalore
Father-in-laws birthday - running around completing legal formalities for the transplant
Dad's birthday - working out procedures in Germany, preparing for the upcoming months of stay in Bangalore.
May 11th, I successfully finish my course - preparing to get admitted in the hospital on 13th for the upcoming surgery on 15th.
Mom-dad's anniversary - spent in separate hospital rooms. Me in isolation.
Mother-in-law's birthday - providing updates on the phone of my condition
I finally own my apartment (cleared my mortgage) - visiting the hospital twice daily for injections
Mom's birthday - finally was allowed to eat some sweets. But that's it.

Now, V(husband's) birthday, looks like will also be spent with no celebrations...

That's just how overwhelming things are trying to deal with this situation - it overshadows real reasons to find joy and take a moment to celebrate :(

All that spiritual bullshit

My faith in spirituality has increased through this journey...
Yet there are days when believing in the principles and philosophies of spirituality seems not only difficult but just IMPOSSIBLE.

I've read lots of spiritual books in the last several months. One BASIC principle is to appreciate and live in the NOW as that's all there IS.

It is frustrating to the core when me, the patient is the only one trying to follow this principle.
Despite being witness to as much uncertainty and surprises life has thrown at me and people around me, it is still an alien concept to just take things as they come and focus on the now.

With my mind working from one test to the next and freaking out with the Creatinine playing yo yo...its amazing how far in the future others can really think of and worry about.

Yes spirituality also taught me, I can only control myself. So, I'm going to still focus on the NOW...if other's cannot too bad. They can drive themselves crazy if they choose to.

Creatinine decides to play yo yo

The last few tests reports have been rather unstable, so have been emotions, frustrations and tempers. Every 3-4 day we eagerly wait for the report of the blood test only to find out it has not yet stabilized - the doctors call it Yo Yo Creatinine - when it takes time to stabilize at a certain level.

Yesterday it turned out that another problem was, the trend was, it was slowly creeping up. So now I have school of thought applied on me.

• A new immunosuppressant - Everolimus has been included to my medicine protocol.
• The traditional Tacrograf has been reduced (not eliminated due to the rejection incident recently)
• Myfortic will slowly be phased out
• Prednisolone will also be slowly reduced.

I'm now on this new experiment. Next test is on Saturday. Hoping...

6 litres of water and more...

Hydration plays a very big role in kidney function. So I am advised to drink 6 litres of water a day and if possible more... :-O

Thankfully this wont be a permanent thing and I wont be a permanent contributor to the world water crisis :)



 

 

Mirror mirror on the wall

I noticed today that other than the fact that my face is all puffed up there is increased facial hair growth too - something I never had before.
A known side effect of Prednisolone.

Although I will be completing 3 months of my transplant in 12 days, the dosage of this steroid and also my immunosuppressant is quite high.

So I have a bloated belly, puffed up face, more hair on my face than before.
I wish I knew there will be all these things happening to me post transplant - that I will have to deal with it for a long time. Yes, within the big picture these are probably temporary and minor but for a woman these things play a huge role in self esteem, morale and the STRENGTH needed to pull through this.

I hate to look at myself in the mirror.



Old me (Before)



New Me (after transplant and consuming steroids)