Help Rajesh

Dubai bound.

2010-02-27T19:38:00.004+05:30

Dear All,

This could possibly be my last update from India. Things have been changing over the last two months since my last check up at Vellore in Jan 2010. I have passed my medical test in flying colours the doctors have given me a go ahead to move on in life. All my Antibiotics have been stopped and a fresh immunization scheduled has began. I need to have all the vaccines redone again as my marrow has gone through a complete overhaul. Like Varun I am having my immunization plan. I finished two already and need one more to complete the cycle.

The current program as it stands is as follows. We will all move lock stock and Barrel from Trivandrum by this month end and settle Padma & Kids at her Place in Palakkad , after which my Dad and I will proceed to Dubai, hopefully should have our papers by then. Padma and Kids would join us immediately after I arrange for their papers after reaching Dubai.

The uphill task I see is the setting up process in Dubai so all a hectic period is awaited. My next check up at Vellore would only be in July. I am anxiously waiting for all these to happen smoothly and the next time any of you folks are flying to India should plan with a stopover at Dubai with me.

Thanks for all the support and please await for my next update from Dubai.

Regards

Rajesh

Recent portrait pictures

2010-01-07T17:03:00.002+05:30

HAPPY NEW YEAR AND SEASONS GREETINGS TO ALL

Rajesh, Padmaja, Hrishikesh and Varun

Overdue update

2009-10-16T00:05:00.000+05:30

Dear friends and well wishers,

It has been quite a long time since I posted an update. My sincere apologies for the delay.

Let me start from where we left off, the check up in June was special in many ways.
A) I had a chance to meet Naaree (after 25 years) and Sankaran in person.
B) On June 27th I completed a successful year post BMT . This is a land mark in itself.

Standing up tall as the 1st MUD from CMC is a credit to that institute and it’s great staff. I owe this to a lot people whose prayers and blessings have got me here. So a heartfelt thanks from me and my family for being the pillar of support during the rocky times.

There has been a shift of residence for me and my family since June. We have relocated to Trivandrum as it provides a better medical support for me, better education for me kids and we have an off shore development center from where I could support my team better, when time and my health permits.

This was indeed a refreshing change for all of us, which we welcomed with open arms. The next scheduled check was planned for in Sept after three months from the last check up, this in itself was a good news as a gap was given. I had my investigation done by the Haemat Dept, Neuro Dept and Infectious disease dept. , An MRI was suggested for the next visit by the Neuro Dept just to compare the scans in March. As planned we had done a regular check on blood counts locally and same was reported to CMC. July was uneventful health wise but did manage some progress personally as I ventured out to attend to conference call from our development center and started driving a bit ( which I found less strenuous than my walking). July blood report too provided was stable on all counts and showed a lot of stability health wise.

August started off well, as slowly and steadily I was getting to become a confident driver and my walk was improving without my crutches. Onam, was in the offing and we were all prepared to be in Palakkad to celebrate the same, however as fate had it by end of the month I had developed a major pain on the right side chest and back. Immediately referred to a local hospital who suspected “Costochondritis” (an infection in the Rib Case). In the next two days went in pain and pain killers, but then I had developed blisters in left leg and back, thus it was easy diagnosis for the Skin specialist as “Herpes Zoster”. This was informed to CMC doctors who along with the local Doctor advised an Antiviral for two weeks and a follow up was planned for, after two weeks. This disease can best described as of a “nuisance value “ and hence not to be bothered about. Treatment was effective however the pain persists even now. The post therapeutic neuralgia may continue for a longer period. Due to this infection my planned check up in September was postponed to 1st week of Oct.

We (Dad and I) reached Vellore on 4th and on 5th we had the appointment for MRI and Blood checks followed by meeting with Doctors at Hematology Dept. The counts as in past showed significant stability and increase( HB 12.8 ,Platelets 216000,WBC 8500.), Liver function test results were well within limits and so was the other main parameters. This made the doctors from Hematology pleased with progress made so far. I had appointments with Neurology and ID departments for the 6th . The MRI showed a significant reduction in brain abscess when compared to my previous MRI. Neuro surgeon was happy from the recovery so far and so advised me of more regular walks to improve on my walking stability. ID dept suggested that I continue with the antibiotic suggested for the Nocardia infection for another 3 months until December when another check was suggested.

So until Dec I would be following the previous schedule of blood tests locally and informing Doctors from CMC until I get to Vellore for my next detailed check up . I sincerely hope that the script of my life becomes less complex than before!!!

Thanks to all of you for being supporting me through this ordeal.

Wish you all a very happy and safe Diwali.

Rajesh

Visit to Vellore

2009-06-24T22:26:00.001+05:30

Sankaran and I got a chance to meet with Rajesh and his dad during one of their regular check up visits to Vellore.

I was really happy to see the progress he has made. From all accounts, he is making very good progress. His counts, even those from his current visit, are all healthy. He seems to have gained back some of the weight he had lost. His walking has also improved tremendously. Sankaran and I spent the entire day with him. We all visited the Golden Temple at Sripuram. Rajesh, proudly, gave us a tour of the facilities that CMC has put together for their BMT patients. Also had the pleasure of meeting Mrs. Chandy, who Rajesh affectionately calls his God Mother. After spending a few minutes with her, we can now understand why. She is such a selfless lady devoting her time to boost the morale of all the patients, young and old. I was really moved by the little patients, that were at the play room. I have promised to do toy drive (new, used, unused) and ship it to her, to benefit her play room.

As his one year anniversary of the transplant approaches (Jun 27th), we should all continue to pray that he stays on this course to recovery and there are no more setbacks for him.

Here are some photos from this trip

Narayanan
Help Rajesh Team.

Update

2009-05-15T06:28:00.001+05:30

Dear All,

It has been a month since we have moved out of Vellore to Palakkad and provided an update from my side. I just got back from Vellore after a detailed monthly check up. Further I have successfully undergone a 14 day basic Ayruvedic treatment to tone up my muscles at home.

As regards to the check up on 11th and 12th at Vellore, my blood counts are holding good and no major issue of concern. My liver enzymes are still a bit elevated which may be due to the drugs I am having currently. A few tests for which results are awaited would be used to decide and finalize my medication by the Doctors at CMC. They are happy on the progress made so far, I have definitely put on more weight and looking a bit puffed up due the Steroids I am on. My walking was the challenge during the entire trip as I had a lot to walk at stations and at the hospital. The Ayurvedic treatment has definitely helped, My walking is smooth, but still there is a lot to achieve, (fear I may fall still hounds me and my walking ) . This trip was big change for me from the confinement with the house perimeters since my return from Vellore in April.

Elections are on and the heat of the same is being reflected in the weather too. Vellore was a soaring 40 plus as it is the month “ Agni Nakshatram” (period known for its excess heat in Tamilnadu ).Kerala too is still awaiting it monsoons hence the temperature is soaring high here too.

Thanks for all the continued support , on path to full recovery soon I suppose.

Thanks and regards
R. Rajesh

Move to Palakkad

2009-04-15T20:22:00.000+05:30

Dear All,

As of 12th April , We have moved out of Vellore and into Palakkad for now. I need to go back to Vellore for a monthly check up.

As of the last check up on 9th the counts were holding good and no other issue of concern. My liver enzymes were a bit elevated for which my steroids dosage was increased. My walking is improving slowly but still a lot to achieve.

Thanks for all the support , hopefully on path to full recovery I suppose.

Thanks and regards
R. Rajesh

Update

2009-03-29T21:20:00.000+05:30

Ten days back, Rajesh fell down outside the house when he was going for a check-up and hurt his back. He was bed-ridden for a few days with acute back pain. He went thru some physio-therapy and massage and is ok now. His walking is still wobbly(like a 9 month old baby as he puts it). Fortunately he didn't fracture any bones as that would have complicated matters.

Back home

2009-03-11T17:49:00.000+05:30

Folks,

Rajesh has been discharged (released, as he puts it) from the hospital. He is really thrilled to be back home. It was really nice talking to him. Just being home seems to have lifted his spirits. He sounded much more energetic. Hope his recovery continues to improve from this point forward.

He is still walking with a crutch. The lesions, though lesser in size, continue to be there. But the doctors are hopeful that oral antibiotics should continue to work on those. His apetite is almost back to normal levels.

HelpRajesh team.

Rajesh Update

2009-03-07T19:52:00.000+05:30

Rajesh is feeling and sounding much better now. He is able to walk without a walker but with a walking stick. His food intake has improved also. The hand twitching has reduced too. If not for the antibiotics treatment regimen, he would have gone home already. They will be doing a MRI on monday and most likely he will be discharged on wednesday. They are planning to go to Palghat after Rishi's exams.

Update

2009-03-03T00:23:00.000+05:30

This update is based on a conversation with Rajesh's dad. He seems to be getting much better. His marked improvement is being attributed to his appettite slowly getting back to normal levels. He has gained some strength and has put on some much needed weight. He is able to walk for extended stretches with the help of just one crutch.

His counts are holding up very well. He is scheduled for an MRI in the next 10 days or so, to monitor the lesions that he had inside his head. If the antibiotics have taken care of the problem and the lesions are not seen anymore, he is looking at a discharge in the next 10 days. This is definitely a positive sign.

His dad specifically attributed his rejuvenated outlook to the visit of Shivkumar and all the nostalgic talk that was exchanged. Kudos to him for taking the time.

HelpRajesh Team.

Update

2009-01-23T18:55:00.000+05:30

Friends and wellwishers,

Sorry for the delay in posting an update on his condition, following the surgery to his head.

He is recovering well. He is still hospitalized and could be for the next 4 to 5 weeks or so, per doctors estimates. Due to the nature of the surgery and the area of the body, he is still a bit unsteady in his walking. He seems to have lost some strength in usage of his legs. The pain in the area of the surgery seems to have reached manageable limits, even without pain killers. He seems to have developed a pronounced twitch or jerk in one of his hands. According to the doctors this is also attributable to that location of the brain. The doctors believe, with continued physio therapy to his limbs he will start to lose the weakness and pain and is expected to make full recovery.

He is also being treated for the infection, by a managed dose of antibiotics to quell or control the infection in his head. The doctors are working towards finding the right formula of medicine and dosage to keep him infection free.

His spirits have also started to soar a bit. He is still unable to have any conversations over the phone. So please do not try to reach him. Any updates on his condition can be gotten from his father or wife.

Keep him in your prayers.

HelpRajesh team.

Headache, literally and figuratively

2009-01-09T18:52:00.005+05:30

Rajesh was admitted to the hospital after his headache took a turn for the worse and was accompanied by some dizziness. A scan of his head apparently revealed some growth/lesions. Subsequently, he successfully underwent surgery to remove the growth.

According to the doctors, his surgery was successful. He is recovering in the ICU and is heavily sedated to quell the pain from the surgery. The good news is that the doctors think it might just be some bacterial infection of the brain in the cerebellum area. Apparently, this is not very uncommon for people whose immune systems are compromised due to anti-cancer drugs. They believe they have cleaned up most of the infection. And any traces remaining can be treated with anti-biotics.

Let us all continue to pray that he faces this hurdle also as he has in the past.

Help Rajesh Team

p.s: Please note that the opinion/information presented above is not made by a medical professional. It is a loosely packaged information based on conversation with Rajesh's dad and wife and their iinterpretation of what they have gathered from the doctors treating Rajesh.

New year greetings and update

2009-01-04T22:15:00.000+05:30

Rajesh and his family wish to convey to all his well wishers, a very happy, health and prosperous new year.

He just returned back to Vellore after a short break. He visited Palakkad and spent the holidays with his in-laws. He is suffering from some neck pain and headache. Hopefully it is not related to his BMT. He has his routine check up scheduled for the 5th of Jan (tomorrow). He will post an update after the results of the check up become available.

Best wishes
HelpRajesh team

Update

2008-11-21T18:00:00.003+05:30

Dear All,

An update has been long over due. The delay is due to the fact that I was in and out of hospital few times - from 29th of October to 13th Of November. I was down with GVHD (Graft-versus-Host-Disease ). Well, the good part is that having GVHD indicates that the body(T-cells) is capable of fighting out foreign cells. This also means that the chances of relapse are reduced. So it was sort of a mixed reaction for my admission as the Doctors were happy that I had some form of GVHD ( Stage 2 ) and they could bring its effects down by administering some steroids and Cyclosporin which was in-fact stopped about a week before 29th.

As the GVHD had effected my liver and stomach detailed Endoscopic studies and tissue biopsies were done to ensure the extent of problem and decide on the dosage of the drugs regime that was to be followed. The GVHD was brought under control with in the first week. However, due to the Steroids, my body had bloated up and the water retention in my body increased which increased my weight from 54 kg to 61 kg within 7 days.

Normally it is un-coded law that what you get within the 1st 100 days of your BMT is considered or termed Acute GVHD and what appears after 100 days is considered as Chronic GVHD. What I have had is both Acute and Chronic but within controllable limits. This is why for the 1st 100days they want you closer to the hospital so that any sort of Acute GVHD can be treated by them.

Now they would have to stabilize my condition with the dosage of the Steroids which they tapper down the bare minimum and also the dosage of the cyclosporine is regulated for a normal level.

I am going for weekly check ups and the good news is with all these variations my counts are all holding good and hence the general health condition is fine.

Coming weeks would answer the future plans for me and my Vellore stay is fast approaching 365 days( One year so to say).

Regards

Rajesh

The 100 day milestone

2008-10-05T05:48:00.000+05:30

As we pass the hundred (100) day milestone, post transplant, please continue to keep Rajesh in your prayers. We are all praying for his progress to continue as well as it has been over these 100 days. Hopefully he will recover well enough to go back to his routines, soon.

Out of the hospital

2008-09-20T20:33:00.003+05:30

Dear All,

After sudden chills and fever due to an E-Coli infection on my Hickman’s line, I was admitted to the hospital on the 6th of Sept. I got discharged from the hospital yesterday night after 14 days. I had to take antibiotics every 6 hours. The Hickman’s line has been removed as it was causing the infection. This was the sort of setback they were expecting after the BMT since my immunity levels are low.

Infections like these happen due to very many reasons. So it's not as if I have been careless. I have also been administered with an Immunoglobulin Injection to improve immunity level. All these days, the immunity level was controlled by the immuno suppressants drugs. They would have to keep juggling between these two drugs for some time and hope for no more such infections / setbacks. My general health and counts are holding on fine. For the next few months, it would a weekly visit to the hospital. My appetite is slowly and steadily getting back to normalcy but I have a long way to go. Do remember me in your prayers to help me get past this phase without much hitch.

Thanks for all the support and strength provided so far. I am glad to say that with the current status of my MUD transplant, there are at least 4 or 5 cases waiting on the wings to go through the process. This gives hope to a lot of patients who would have otherwise not had a chance. So we have all set a path for a lot of people to follow and pray that all these cases would proceed smoothly. Kudo’s and thanks to one and all who has been a part of it in some way or the other.

Thanks and regards

Rajesh

Update

2008-09-13T18:50:00.000+05:30

Rajesh's fever and infection have cleared. He is in the hospital to complete 14 days of antibiotics treatment. He will be getting discharged around 19th September. Counts are normal.

Update

2008-09-06T18:23:00.004+05:30

Rajesh has fever and chills. He is back in the hospital to check it out. His counts are normal. It must be some infection and they are investigating. His food take is very little and that is causing some weakness. So please keep the calls only to uncle or Padmaja.

Photos from visits

2008-08-29T05:47:00.001+05:30

Home after Transplant

With Ravi's family

With Nagu's brother and father

Rajesh video

2008-08-29T04:52:00.002+05:30

To see this video in Google video, click here

Transplant!

2008-06-30T04:18:00.001+05:30

We are delighted to announce that Rajesh Ramanathan underwent a bone marrow transplant in the early hours of Friday June 27th as per schedule in CMC, Vellore, India. He has started the next and hopefully last phase of battle with the dreaded disease of Leukemia.Rajesh's bone marrow transplant - from an unrelated donor - is the first time such a transplant is attempted in India.Please keep Rajesh and his family in your prayers.

Thank you, Donor!

2008-06-26T17:36:00.007+05:30

Rajesh will be undergoing the bone marrow transplant on Friday the 27th of June.

On behalf of Rajesh, his family, friends and all his well wishers, we sincerely thank the donor who came forward to donate and save his life. God bless your heart.

Thank you, Thank you, Thank you!

HelpRajesh Team.

Update from Rajesh

2008-06-25T09:34:00.003+05:30

Preparations are underway and everything is on schedule for a transplant on 27th. Yeah!

Rajesh has completed two rounds of Chemo and three rounds of radiation. There are three more rounds of radiations ahead. He had a bad day yesterday with headache. But today he sounded much better after the 'roasting'(his words). But I could hear the strain in his voice.

He was in good spirits. He is still getting food from home but all the food goes thru the steam to sterilize. He said even the biscuit goes thru the steam! The new facility seems to be top quality and he likes it. He is in isolation and access is limited.

Update from Rajesh - BMT ahead...

2008-06-18T19:34:00.002+05:30

Dear All,

Looks like the waiting is over, my rather extended parole days with my family is coming to an end as of tomorrow. I would be admitted tomorrow for the Bone Marrow Transplant program. The schedule would be :

19th Admission
20th Hickman’s catheter
21st Chemo (Cyclophosphamide)
22ndChemo (Cyclophosphamide)
23rd – 25th TBI
25th night we expect the Donor Cells to be here in Vellore hand carried by the NMDP personnel and as per the schedule I am to have the transplant on 26th morning.

Hopefully this should be the last part of my treatment. I would be admitted into the Bone Marrow Transplant rooms from the 21st onwards which means I would be in Isolation from then on until I recover from my transplant and my counts reach normalcy.

The contact numbers would remain the same for now. The phone number in the hospital room shall be provided once I have it.

Thanks and regards

Rajesh

Update from IVY

2008-05-30T21:12:00.001+05:30

I had a short conversation with Rajesh today. He is back in Vellore but not in the hospital yet. He went to Palakkad with family for about 12 days as there were some delays from the donor side. They reached back because Rishi’s school is reopening on 5th.

The 1st Donor has been found medically unfit for the donation and hence they are now looking at the 2nd donor. So there may be at least 10-15 days delay.

This is quite disappointing because he was geared up for the transplant as per original plan but came to know of this day before yesterday. However, he is still taking things in his stride and is in high spirits having had this break. He has also gained some weight after eating authentic Kerala food.

Let us continue our prayers for quick closure of formalities with the 2nd donor.

Warm regards
Ivy