AKHILA'S APLASTIC ANAEMIA

AAA

8.03.08:

Shri Siddhesh’s marriage in Bangalooru. A and self had gone to attend. We had stayed in the guest house of VAPS. The distance from the guest house to the VAPS office is about 100 meters and the road had an upward gradient of less than 5 degrees. It was there, while walking the road, I observed that A was too slow and exhausted. As I was very much aware of her laziness, I didn’t attach any meaning to her slow walking.

18.03.08 to 26.03.08:
Geeta prachar yatra in Nilgiri district. Programme in tribal and Sri Lankan Tamil settlement colonies. A was as usual fussy about food in the houses. She either completely starved her or had very little. Again, I ignored. Finding fault with food and wasting it was an in-born trait in her, which has always been irritating and angering me since our marriage in 2000.

27.03.08:
News from Nagpur that mother had a heart attack. Travelled to Nagpur and returned on the 1st of April.

02.04.08 to 05.04.08:
Geeta lectures in Shri Ramar Koil in Ram Nagar, Koimbatore. Congested and sore throat was troubling me. Had asked A to support self in singing bhajans during pravachan. It was for the first time, she was to have accompanied me on the stage. She was short of breath and could not sing with me. She refused to come to the venue from the second day.

10.04.08:
We went to meet Dr Shrimathi Mohan Prakash, a gynaecologist of Pollacchi. She suggested Hgb test. A was tested for Hgb level in blood. It was 3.7 and that was the start. Transfusion of 5 units of blood was advised. I contacted a local hospital. The doctor quoted Rs 25,000 for hospitalization, tests and blood transfusion. I discussed with friends and decided to get the job done in Swami Dayananda Hospital, Aanaikatti. As I had a prior commitment in Tirunelveli on the 14th of April and 16th was Shri Ram Navami day, I took her to the hospital on the 17th. On our way to Aanaikatti, we deposited her blood sample with Microbiological lab in Kovai for ‘CBC’. That was the first time I heard about CBC, platelet count, etc. (I did not know that CBC was going to become a weekly affair in coming months.) Her blood report was like this. Hgb: 4.2; Platelets: 8,000; WBC: 3600. The pathologist there was so disturbed that he retested twice for the platelet count. He also did manual count and then called and told me about the seriousness of situation. We were in the hospital with the report. The doctor (Dr Sharada) too was probably disturbed and sent us to a haematologist in Kovai. We met Dr Raghu and he did one more CBC and advised two units of PRC (Packed Red Cells) transfusion. I presumed the problem to be blood cancer / bone marrow cancer and instinctively decided to shift to Nagpur. I didn’t tell A about this decision. She thought it was merely a trip to Nagpur and that too was not to her liking. At the bottom of this decision of mine was probably, the conversation we had, while returning from Nagpur sometime in Nov 07. I told her that I was thinking of returning, rather shifting to Nagpur. It was more to test her. She aggressively reacted to the idea. She said she will tell Shri Jayaraman of my plan and ask him to take her to Pune. I could see the hatred she had for Nagpur. That which was a mere thought became a subconscious resolution at that moment.

21.04.08:
We returned home. I started my efforts to book tkts to Nagpur through the net. Two berths were available in Chennai – Jaipur express on the next day, i.e 22nd and I booked those, but the Kovai – Chennai sector was difficult. I had to take the bus route. I knew it would be strenuous for her, but had no other option.

21.04.08:
We reached Nagpur. I had booked tickets to Hardwar for a week long Bhagawad Gita camp from 4th to 11th May. I cancelled all those. Shrinivas Warnekar thought otherwise. He felt that the Hgb level will improve within 10 days and there was no need to cancel tickets. But, something within me told me that it was very serious. Iron injections, Calcium and multivitamin tablets, Dates, and other iron rich diet started.

14.05.08:
Two units of blood transfused in Kovai had temporarily energized A. This temporary energy drained away within 20 days and A is exhausted and is short of breath. Hgb test showed Hgb level as 4.2. Hgb level has fallen despite all the injections, tablets and iron rich diet. That confirmed my doubt. I decided to get her bone marrow tested.

16.05.08:
First appointment with Dr. P, a haematologist. CBC (Complete Blood Check) done. WBC: 3,900; Hgb: 4.9; Platelets:8,000.

17.05.08:
Bone Marrow test revealed Aplastic Anaemia. (Hers was a case of very serious type of Aplastice anaemia, according to Dr. P). It was some thing I had not heard of. I asked ten of my friends who are doctors. One of them said, it was a small portion worth 5 marks in the examination and hence ignored. Another took pains to surf the web and gave some information. Most of them did not know anything about Aplastic Anaemia. Then, I started studying Aplastic Anaemia through the internet. The information I got were horrifying.
Dr. P gave three options. 1. Bone Marrow transplant. It is not usually done on persons above 40 years of age. Only a sibling can be a donor. The cost may be on the higher side of 40 lakhs. Success of transplant is only upto 10 or 15 %. Even the so called successful transplants were successful because patients did not die during or immediately after transplantation. The deaths occurred a few months after and the death was attributed to multiple organ failure and not due to failure of transplant. 2. The second option was ATG/ALG therapy followed by drugs. (Anti Thymocyte Globuline / Anti Lymphocyte Globuline.) It has supposedly 40% success rate. But it has to be followed up with Cyclosporin drugs (Immuno suppressive drugs) for indefinite period of time. The revival of bone marrow may or may not happen. It may revive within three months or may not, even after ten years. It seemed to me as an entry into dark tunnel. 3. The third option suggested by the doctor was continuous intake of steroids and Cyclosporin drugs. Each one of these three options had to be supported by regular infusion of blood and blood components. “Anyhow, she will be bedridden and totally dependant on periodic blood transfusion for an indefinite period of time”, said the doctor. What if she is not subjected to any of these three treatments? Death, the doctor said, is sure but may not be immediate. If it was uncertain anyhow, then why not enter a different therapy? In fact, I strongly felt like reaching for a quiet resort in the Himaalayas and wait for death. If it was a certainty. At least the last days would be peaceful. Though I don’t believe that doctors have the power to fix one’s date of death, every doctor I contacted suggested that she had anywhere between 6 months to 18 months. If there was to be a miraculous recovery, yes, recovery would be miraculous even if the suggested treatments were to be given, may that happen on the beautiful and peaceful lap of divine Himaalayas. That seemed impossible as the subject here was not me. A had to be told in detail about her ailment, the uncertain effects and certain side-effects of the suggested treatments and her mind had to be prepared to face the sufferings and even death. (I am writing this addition one year later, i.e. on the 4th of May 2009. What I said above was probably due to my arrogance and ignorance. She has bravely endured a lot of pain and sufferings in the last one year, much, much beyond what I thought she would.) This was not possible in her present state of mind. These were the thoughts in my mind then.
She was given three units of PRC, two of PC (Platelet Concentrate) and one of WB (Whole Blood). I decided to go for Ayurveda.

24.05.08:
Report of A’s bone marrow biopsy test was received today. It ruled out cancer. I decided to go to Chennai to admit A in Arya Vaidya Chikitsalayam, a branch of Arya Vaidya Pharmacy and reserved tickets for Chennai on the 29th. I asked Shri Jayaraman to come to Nagpur and explained the whole thing to him. He took the news in right spirit.

29.05.08:
Left for Chennai.

02.06.08:
Admitted A in Arya Vaidya Chikitsalayam. This was of course a risky step. But, was not entering allopathic treatment an equally risky one?
The next two months in AVC were peaceful. A was stable there. Though there was no improvement, there were no side effects either. The internet sites on Aplastic Anaemia indicated very severe side effects. The reduced platelet count would result in red spots or bleeding all over the body, gum bleeding, bloody stools and worse, bleeding in brain resulting in death. Reduced white blood corpuscles may result in infections and reduction in Haemoglobin may result in weakening of heart, lever or kidney. None of these suggested effects appeared while we were in AVC. CBCs done while we were in the Ayurvedik hospital indicated no improvement in blood count either. We had to transfuse four units of PRC and two of PC in Chennai. The blood transfusion process seemed costly in Chennai. I decided to take medicines for the next three months and leave for Nagpur. A’s plight in the Ayurvedik hospital was enjoyable for me. She detested the allopathic medicines and injections with all its side effects. At the same time, her one and a half inch long tongue did not relish the bitter Ayurvedik kashayams and arishtams. She used to take more than half an hour to gulp 20 to 30 ml of Ayurvedik medicines. I am reminded of the story of a convict who was sentenced to suffer 50 whip lashes or eat 50 onions and was given the freedom to choose. He could not relish either and ultimately had to take both.

29.07.08:
Appa, Amma and A travelled by train and myself and Venkat drove the Maruti van to Nagpur.

10.08.08:
Within ten days of coming to Nagpur, A’s health collapsed. The effects of low platelet count were visible. A was admitted in Vivekananda Hospital in Khapri and 2 units each of PRC and PC were transfused. The experience in Khapri is a different story.

23.08.08:
The good effect of blood transfusion did not last for even for two weeks. A’s health deteorated. We went to Dr K, another haematologist, and there was again blood transfusion and loads of medicines.

02.09.08:
The same story again. This time we went to Dr P. (Platelet count at
Dr K’s clinic was 53,000 and that at Dr P’s clinic was a mere 5,000.) CBC indicated the same status. He again suggested ATG/ALG treatment. It was to be a major decision. I had no money. I had no insurance cover. The cost of treatment would be in the range of five to six lakhs. I discussed with Shriniwas Warnekar. It was at his insistence that I agreed to go for the treatment. Shri Dhandapani had already promised to take care of all the expenses and had transferred Rs two Lakhs in May itself. Shri Sadagopan had also transferred Rs one lakh. Shriniwas Warnekar promised to take up the cost of injections.

04.09.08:
A was admitted in Orange City Hospital for ATG / ALG treatment.

07.09.08 to 16.09.08:
ATG treatment started. Each injection costed 18,000 Rs and A was to be given twenty injections. Once started, the injections can not be stopped and injections were available only on prepayment. Shriniwas asked me not to bother about the injection cost. Cost was not a problem. But anything could happen during the injections, according to the doctor. Anything from minor tremors to instant death. Injections went in without any serious problem.

20.09.08 to 07.11.08:
Steroids for a limited period, cyclosporine capsules and antibiotics of different types continued for the next two months. This was the worst period. A was admitted to hospital thrice in this period, once for fungal infection in the intestines, once for throat and oesophagus infection and the third time after she swooned in the latrine. As many as 80 units of platelets, PRC and whole blood have been transfused. Every transfusion was a struggle. Her veins had thromboses. She had to be pricked in at least two spots even to get two mls of blood for cross matching. Finding a vein for transfusion was even more painful and difficult. Severe and continuous pain in the abdomen, heavy bleeding in stools and gums, lack of appetite and extreme weakness marked this period. There was an attack of Jaundice too in November. (It was very effortlessly cured by Shri Ghate using herbs.)
Every time I woke up in the nights and every morning, my first act would be to check whether her breath was on. Every time I put some water in her mouth I would feel as if I am putting drops of Gangajal in a dying person’s mouth. Every night while I gently rubbed her abdominal area chanting Gayatri mantra, I would think that she may not see the dawn of the next day. I was having an uninterrupted Darshan of Death all these months. I am reminded of an experience during the dying moments of my Thatha. I and Ganesh were by his side when Thatha was admitted in Medical College Hospital. I was continuously observing his struggle to breathe and was determined to watch the very last moment. But, Death has its own ways, probably. Thatha died when neither of us two was nearby. I had come out of the ward to breathe in some fresh air and drive out sleep and Ganesh was in the toilet.

08.11.08:
A was fed up with all the medicines and no visible relief. Her appetite was totally lost. Her intake of food was one or two teaspoonfuls. She stopped taking medicines.

14.11.08:
Three units of PC were transfused and that was the last in the series of almost once-in-five days platelet transfusions since August.

25.11.08:
Dr Lajpatrai Mehra visited Nagpur. I took A to him. He assured a complete recovery and gave a formula. I started giving neurotherapy.

25.11.08 to 29.12.08:
I’ll call this as the ‘period of recovery’, if not at pathological level, at least at clinical level. A‘s skin had developed wrinkles and was like that of an 80 year old. Her skin started to peel off and the usual smooth skin reappeared. She had severe itching all over her body. It gradually subsided. The abdominal pain almost disappeared. Bloody stools and bleeding gums became things of past. Food intake, which was a meagre two or three spoonful, increased. Almost after seven months, she started saying “I am hungry.” A started walking down to the dining hall for food and ‘On-Bed dining’ ended. If it was not for the severe winter cold, the bed pan also would have exited the room. There remains a danger signal. A’s weight is continuously going down. It was 37 Kg on the 25th of Dec.
I gave her ‘Complementary system’ and platelet count improved from 5,000 to 95,000 in twenty days. There was no improvement in Hgb level. It fell at the rate of 1 point per week. I decided to go to Mumbai and take treatment at Shri Mehra’s clinic. The Hgb was at 6.1. One unit of PRC was transfused and we flew to Mumbai.

07.01.2009:
Visit to Mumbai did not kindle hope. Hgb level fell fast and was at 3.1 on 6th Jan. A was admitted in BSES hospital and the haematologist there advised transfusion of six units of PRC in two days at the rate of three each day. The cost involved seemed too high. I cut off the treatment to one-day affair and got A discharged against medical advice. We flew back two days ahead of schedule on the seventh of January.

14.01.08:
Where do we stand now? I feel she has to live with regular blood transfusion. If it is once in a month, I can gradually resume my activities and trips to Tamil Nadu and Dubai.

19.01.09:
Blood test showed fall in Hgb level. We have planned to go to Pune on 23rd. I’ve to be there for a Brahmin Sangh meet on 24th and 25th. A is accompanying me to be in her sisters’ and brother’s homes. We plan to return on the 29th. Blood transfusion (2 units each of PRC and PC) done so that A is fit enough to travel. Number of units of blood and blood components transfused so far has crossed 100.
I told Dr.P that A has stopped taking the prescribed medicines since the last two months now. “So, you have left it to God”, was his reaction. “How is this system where the patient has stopped taking the prescribed medicines and the Doctor can not find it out, unless the patient reveals it?”

23.01.09:
The trip to Pune was cancelled at the last moment as A developed complications. She started having bloody stools after so many days.

30.01.09:Blood tested and three units of PRC transfused. I did not go to Dr P. Instead, I got the blood tested at B K Lab. One funny observation in these blood tests is that whenever I gave blood sample to any other lab, the platelet count seemed to be higher and those tested at Dr. P showed lower counts. (Relatives of two other patients at Dr P also had the same experience). On three occasions, I drew out simultaneous samples from A and sent one to
B K Lab and the other to Dr. P. The platelet counts on the three occasions were respectively 39,000, 45,000 and 96,000 at B K’s lab and 5,000, 5,000 and 7,000 at Dr. P’s. I do not wish to doubt the integrity of both, but, am puzzled at the reports. Could it be error of the instrument? It should not be. Thermometer of any brand should show the same temperature on the patient’s body. Could it be human error, i.e. error of the technician? I discussed this with one of the doctors at B K Lab. He got furious and refused to discuss. On another occasion, I gave A‘s blood sample to M Lab on the west high court road. (one, Dr. M by name , runs it) His report showed a platelet count of 1,25,000. I phoned him and told him that the patient is cured of the ailment, if the count was 1.25 lakhs. He asked me what the problem was. I said A was suffering from Aplastic Anaemia and has been having counts in the range of 5,000. His response was interesting. “Oh, you should have told me that”. I asked him, “Would the results have been different if I had told you before?” Any how, I sympathise the pitiable patient, who accepts the report as it is and gulps all the medicines prescribed on the basis of such a report. These experiences reconfirmed my conviction that the allopathic medicines do not have any curative effect on the patient.

14.02.09:
I called the technician from B K Lab for drawing sample for CBC today. The Hgb level seems to be falling at a fast pace. 4 units of PRC and one of PC were transfused at Uddanwadikar’s.

18.02.09:
We are at Sriniwas Warnekar’s farm house for a weeklong stay. I had planned to recite Shrimad Bhagawat Katha to A. I somehow feel she has last few days of this life left with her. I do not know whether it is an intuition or a wishful thinking. Blood transfusions can not go on and on. There must be a logical end to that. It can only be a miraculous and inexplicable cure, i.e. revival of bone marrow functioning or death.

06.03.09:A has been having continuous abdominal pain since last ten months. Neurotherapy had some marginal effect, but the pain never vanished. Today, I took A to Dr. Mukewar, a gastroenterologist. Ultrasonography was done and the report showed thickening of ascending colon wall.

08.03.09:Blood test and transfusion. 1 unit of WB and two units of PRC at Uddanwadikar’s. I plan to leave for Pollacchi on the 11th. Her weight is 35 kgs.

11.03.09:Pollacchi trip cancelled.

21.03.09:Visited Dr.P. Blood test revealed that Hgb level of A is 8.3. It was surprising because A’s Hgb level has been falling at the rate of one gm per week. 3 units were transfused on the 10th. In the last ten days, her Hgb level should have fallen at least by 1.5 gms. Anyhow, improvement, if any, will be confirmed within the next ten days.

30.03.09:Blood test today showed Hgb level of 5. It is still more amazing that three units have dropped in nine days. I do not see any pattern in this. The WBC count was 3,800, which probably explains the rapid drop. Her type is said to be ‘Anti nuclear antibody’ positive.

31.03.09:The transfusions were smooth and rapid at Sanjeevini Hospitals. But, A ran fever upto 103 degrees on both the days after the transfusion. Fever subsided after I gave her ‘Gorochanadi’ , a very effective Ayurvedik tablet. Once, Dr. P had passed a nasty comment to Dr.Uddanwadikar about A being given Ayurvedik medicines. I wonder at the depth of prejudice these doctors have about other ‘pathies’. Dr. P himself had suggested use of paracetamol tablet, in case A catches fever after or during transfusion. The purpose is to reduce fever. What is the harm if the work is done effectively by an Ayurvedik tablet or by any other means? A has stopped taking medicines prescribed by Dr. P since last November and he can not even know this through so many tests. I can’t but laugh at such foolish prejudice.

06.04.09:I had been to Pune for three days. It was for the first time in last one year, that I have left A alone. I had to cancel reserved tickets minutes before departure of train, on previous two occasions. Even on this occasion, A was profusely bleeding through gums on the day I left. May be, it was more psychological than real. Anyhow, it was a desirable experience for A.

19.04.09:Visited Dr. P. Blood count showed Hgb level of 4.2 and platelet count of 13,000. He has advised transfusion of 4 units of PRC. Since January, I’ve been calling technician from BG lab for CBC test and deciding the number of units to be transfused by myself. We visit Dr P once a month. Considering the fact that we transfused 4 units on the 30th, 31st March and the 1st April, the drop in Hgb level has been very rapid.
Transfusion is being done at Sanjeevini Hospitals. The Dr pricked A’s nerve, by mistake, while finding the vein for vesofix. A had severe sensation of an electric shock. (But, there is no nerve in that area, according to Dr.P.) Today, she also wasted quite a large quantity of blood while piercing the blood bag with the tip of the BT set. I’ve been changing the emptied blood bag with fresh one (i.e. removing the BT set from emptied one and connecting it with the fresh one) since last few transfusions. I carefully observed the doctor and the nurse do it and learnt and tried my hand at that. I have been quite good with the work. On the previous occasion, doctor came to know that I’ve done it and scolded me for my ‘foolishness’.

19.04.09:Had a detailed discussion with Dr. P. He declared that the ATG therapy given to A last September has not yielded the desired result and “we are back to square one”. A has been having severe knee pain and a stiffened knee joint since last two months. The knees appear to be swollen a bit. I asked him if there was any chance of her developing rheumatoid arthritis as an offshoot of aplastic anaemia and he replied in the negative. She may develop rheumatoid arthritis, but it will not be due to aplastic anaemia, he assured.
A has been having abdominal pain, hardening of stools and for her intake, an excessive volume of stools. Dr A once again suggested colonoscopy for the abdominal pain. ‘Satisabgol’ is having a very positive effect on her constipation. The third problem is probably, due to poor efficiency of her digestive system and needs a long term effort. Two positive aspects emerged in this meet with Dr. P. A’s weight has remained steady at 35 kgs in the last one and a half months. I saw a faint ray of hope of recovery in this, though Dr. P rejected my suggestion and listed a few other factors that could be the cause for this. The other one was increased platelet count in his report. A’s platelet count was 13,000. It has always been in the range of 3,000 to 7,000, at least with Dr. P’s lab. Hence, platelet count of 13,000 seemed a good level.

04.05.09:A has been profusely and continuously bleeding through her gums since last ten days. It is an irony that she did not bleed so heavily when the count was much lower than 13,000. We visited Dr.P today and gave a sample for CBC. The result was more amazing. The platelet count was 28,000. It seems Dr himself could not believe. He retested and the result was same. He has not prescribed blood transfusion but has asked us to retest on Friday, the 8th. The result on paper may be 28,000 but the bleeding through gums has not relented.

08.05.09:CBC done on A. The platelet count was 3,000. The oral bleeding was very heavy yesterday night. A was admitted in Orange City Hospitals at 11’ O clock in the night. 4 units of PC were urgently transfused. The life of platelet in a healthy human is around 10 days. The life of platelet in donated blood is much shorter and hence the improvement effected by platelet transfusion is negated within four days. This was the testimony of Dr. P. He had said that we will manage and control bleeding and avoid transfusion of platelets. I reminded him of this opinion of his. He clarified that there is no alternative to transfusion of PC if bleeding is there. One unit each of PRC and fresh WB were also transfused and A was discharged on Monday, the 11th.

16.05.09:As suggested by Dr. P, A was normal only for three days and oral bleeding resumed with the same fury on Wednesday night (13th of May). She was readmitted in Orange City Hospitals today in the morning. Again, there were transfusions of 6 units of PC and 2 of PRC. Injections were also loaded into her veins, presumably, to heal and close the bleeding cavities in her mouth. It seems, the treatment is only for symptoms and there is no definite treatment for the problem. I had a discussion with Dr. P. I asked him if transfusions would become a weekly affair. He said it could possibly. There is no alternative to platelet transfusion while bleeding. Then, I asked him if the latest developments were signs of deteoration and indicated early death. His reply in his own words: “I won’t use the word ‘time bomb’ and would not dare to give a date for her death. Rather, I would say she is on a ‘land mine’. It may explode any moment. It may not explode at all. With platelet count less than 10,000, it is good so long as the bleeding is visible. It will just be a few moments before she dies, if the bleeding occurs in the brain. And that ‘if’ is a big ‘if’. It may happen any day, any moment and without any warning.”

27.05.09:The same story again. Excessive oral bleeding for the last three days. Anal bleeding, though not much, started today and A was admitted to Orange City Hospitals. 4 units of PC.

02.06.09:

Admitted again today. 4 units of PC and one of PRC transfused and discharged.

08.06.09:

Admitted and 10 units transfused. (5 each of PC and PRC). In these five weeks, there has been a steady increase in platelet count. It was 3,000 on the 10th of May. It rose to 6,000 on the 27th. Then, it became 11,000 on the 2nd of June. Today the count was 21,000. Let us see if the rise is consistent.

19.06.09:

A has been having high fever since last three days, especially in the nights. Yesternight the fever was in the range of 103 and 104. An unusual phenomenon was there today since morning. The fever was below normal from 95 to 97. But the doctors do not have uniform opinion on the effect of below normal temperatures. The platelet count was 13,000 on the 17th at Dr. P and was 16,000 at BKP today. The doctors at OCH struggled hard for more than one and a half hours to find a vein and fix the vasofix on A for transfusion. Dr P is on vacation and had referred A to Dr Mrs B. She wanted two more units of PRC and three of PC to be transfused to A. I refused and got A discharged after the transfusion of three units of PRC and 4 of PC. PRC transfusion took unusually long this time. (7 to 9 hrs per unit.) A is getting tired of these transfusions.

23.06.09:

A’s sister Sugandhi has come from Chennai. For a change I’ve left A in her charge and have come out to stay at an unknown place for two or three days.

25.06.09:

I returned home today. I wanted to give a shock treatment to A. She has become totally dependant on me. Her body’s response to various efforts have become unpredictable. Dr. P told me on my previous visit that her body is not responding to transfusion. The transfused blood is getting destroyed very fast. He did ‘Ferritn test’ for iron deposit level in the blood. It came out to be 960. (The upper limit for women is 212). I could not read from his face whether he was worried. (Probably, he is trained as depicted in ‘Munnabhai MBBS’ to disconnect emotion and profession.) I concluded once again that the mind is the key and decided to abscond. I expected one of the two extreme possibilities to happen. Either A’s body will be put on road to recovery or she would die sooner.

26.06.09:

Today, brownish red spots appeared all over A’s body indicating very low level of platelet. The spots are all over her limbs, back, chest and abdomen. She has been having tar coloured stools since last two weeks and bright red coloured urine since last so many days. I called Dr Rajdeep Chaudhary on Dr Uddanwadikar’s suggestion. The Dr said that she has to be immediately admitted and 4 – 6 units of PC have to be transfused. I wanted to avoid admission in a new hospital in the night and hence put it off till the morning. The Dr was not comfortable with the decision. He advised vigilant watch and offered to help if something unexpected happened at any at any odd hour of the night. The next day, on the 27th something surprising happened. A’s stool and urine colour normalized but the spots remained. I sent a sample of her blood for CBC and the results were more surprising. The platelet count was 19,000 showing an increase of 3,000 in seven days. The Hgb count was 9.1 which again does not fit into any logic. Three units of PRC should normally increase the Hgb count by 3 to 4.5 gms, (from 4.7 to 7.7 or 9.2) Though an increase of 1.5 per unit of PRC transfused is predicted theoretically, that has never been the case in the so many transfusions till date. The reduction in Hgb has been one gram per week but has 4 gms per week since 8th of May 2009. Anyhow Hgb count should not have been more than 8.We put off hospitalization and transfusion by a week.

01.07.09:

A hospitalized. Bloody stools and gums, being the reason. 8 units of PC and 2 of PRC transfused. Bleeding has not stopped even after discharge from the hospital. In the week from 1st to 8th, she has been having continuous anal bleeding. It was at its peak on the 8th of July, when blood gushed out in full stream and the bed pan was full of blood twice.

08.07.09:
Admitted again and 2 units of WB and 6 units of PC transfused.

25.07.09The human body is most unpredictable and mysterious. There has been absolutely no problem since last 15 days and there is no reason for it. No bleeding, no pains.

27.07.09:Went to Dr.P. CBC done. Plt 24,000 and Hgb 5.3. It is not without reason that A is without problems since last 15 days. She is on Anapalon. Asked Dr about the drug. He said it is a steroid. Steroid has boosted her systems and she is seemingly fresh. I do not know if it is curative. The Dr does not either. If he was, why has he not prescribed this drug before? It is cheaper than ATG/ALG therapy. Or, is he resorting to this as frantic final effort? He has not discussed with me before prescribing this drug. It is supposed to damage Lever and Kidney. But the Dr said, “Now we are not concerned about those things. We are concerned with blood. We’ll face it if and when the ‘damage’ occurs.” I can’t understand how these doctors can be so confident, despite the grossly imperfect knowledge they have.

03.08.09:CBC done on A. Plt is 43,000 and Hgb 4.2. 3 units of PRC transfused at Sanjeevini.

20.08.09:
Surprise! The platelet count was only 4,000. But, visibly A has no problem. No bleeding from anywhere and no spots.

29.08.09:
The plt count was 9,000 and Hgb 4.2. Plt count has increased from 4,000 to 9,000 in the last nine days, without transfusion. May be effect of Anapalon. But, Dr.P says this is very small variation and can’t be counted as increase. He further said symptoms have vanished in her case but the report does not suggest any improvement. He said Anapalon is a very mild stimulant of the Marraow. I asked him if it was curative and if it was so, why did he not give it in the beginning. He was frank in reply. He said, “The most powerful effort was ATG/ALG and it has not worked in her case. Now, as we do not have any other option, we’re trying this. Its side effects are definite, but, curative effect is not.” One option is still open and that is bone marrow transplant. It’ll cost around 12 lakhs, he said. The financial aspect may not be a big problem and can be met but there are other issues involved. First is her age. According to many doctors, it is not advisable after 40 years of age. Dr.P feels otherwise. He says it may be done upto the age of 45 (looked at her case sheet and said) and she is only 46 and is on borderline. “That was at the time of first test at your clinic and now she is nearing 48” I said. He still maintained that it could be tried on her. The second aspect is emotional. The marrow can be donated only by her real sisters or the only brother and all, except Savithri, are above 40. Theoretically, there should be no problem to the donor and the process of donation is also very simple like blood donation. But, the decision involves their partners and mere proposal might be an emotional pressure. I am not very sure if I should talk this proposal to Jayaraman and hence, have not talked yet.

16.09.09:Had been to Chennai. Had to prepone return from Chn. A had fever in the range of 102-104. There was a different phenomenon after I returned. Her body temp was sub-normal. It went down to 96 on Saturday. The pulse was also in the range of 54 to 64. There was also heavy sweating on all these days, especially during the nights. As usual, I contacted Dr.Raveendran. He said, “It might be due to internal infection and is manageable.” I met Dr.P and he felt it might be ‘Sepsis’ and wanted to see the patient. A’s body temp was normal and pulse too was 78 this morning. There were no other visible symptoms but, we went to Dr.P. Today’s CBC report was surprising. Plt count was 25,000. Today, it is exactly one year since she was administered ATG treatment. I asked Shri Amit Das if there was any chance of the therapy showing positive signs after one year. He didn’t know. He is the representative of Pfizer and had supplied those ‘atgem’ injections last September. Today’s report shows a glimpse of hope for recovery. Last platelet transfusion was on 9th of July. “More than two months have passed and if the Plt count is 25,000 today, it is a definite pointer towards a faint effort by her marrow” said the doctor. Let us wait and watch. I had visited ‘Nadi Jyothisham’ last month. The ‘nadi’ predicted that she’ll be gone before my 52nd birthday, i.e. June-2010.

24.09.09:The platelet count today was 11,000 and HgB 5.2. The biggest surprise today was increase in her body weight. A weighed 40Kg today. Theoretically this is not possible. She had gone down continuously from 50 to 34 in the last 17 months. All aspects except CBC counts seem to be normal. There is no bleeding. Body weight has recovered. She feels hunger and eats well. Motions and sleep are normal. But, bone marrow has not started working, as is suggested by CBC report. As long as the bone marrow does not start functioning, all the other things have to be temporary. She has been having severe migrane like headache in the nights which continues inspite of other symptomatic improvements.

10.10.09:Plt counts 12,000 and Hgb 6.9. It is 13 days since the last transfusion. Reduction of Hgb level has slowed down, it seems. Probably, absence of bleeding has caused it. It will be good if frequency of blood transfusion can be once a month.

11.10.09Went to meet Prof Dr. J’kar of GMC. He is a senior prof in Government Medical College. Two points emerged out of the discussion. 1. ‘Absence of fever may not be a good sign. Fever is the result of body’s fight with foreign bodies. Absence of fever suggests that body is not producing soldiers and that the soldiers have lost the power to fight’. 2. ‘Her reports seem to suggest that her bone marrow may not revive. Normally, bone marrow revives itself within six months, many times even without medicines. She has survived for more than eighteen months, probably, because she was given the best possible treatment and care. Otherwise, such patients do not survive beyond one year’. When her problem was diagnozed as Aplastic Anaemia, Dr R gave her 18 to 24 months.

19.10.09:The plt count seems to be stabilizing around 10,000. It was 10,000 today and Hgb was 4.7. A was admitted today in OCH and blood transfused. Dr had advised 2 PRC and 3 PC, but PC was not available with the blood bank. Then he advised 1 unit each of PRC and fresh whole blood instead of PC. The blood bank had 10 days old blood. It was transfused. I overlooked the doubts in my mind. Discharged on the 21st and I left for Shivakashi on Friday, the 23rd.

31.10.09:Frantic calls from Nagpur. It was gums-bleeding on the first two days and then it was high temp. I rescheduled my prog and returned from Erode on 29th. Went to meet Dr.P and this was the blood report. Hgb: 9.3; Platelet count was 5,000 and WBC was 1,800. This was for the first time she had bleeding in the urinary track. She was having high fever too. Admitted in OCHRI. 2 units of PRC and 6 of Platelets advised. This is her thirteenth admission to OCHRI. There was a severe reaction to platelet infusion, while the third unit was going in. She had wild tremours and temp shot upto 104. Transfusion has been suspended.

02.11.09:Discharged from OCHRI. Went to Dr.P to check CBC, to know the rise in blood count after transfusion. Plt – 22,000; Hgb – 12.7; WBC – 4.2. 5 units of Platelet has brought an increase of 17,000 and two units of PRC have increased Hgb by 3.

16.11.09:No problem till date.

27.11.09:WBC 2,600.; Hgb 7.4; Platelets 22,000. Hgb has fallen @ one gram in five days. But, platelet count indicates a very faint effort by the bone marrow. No bleeding since last 25 days. Her skin looked like that of an oldie. There is severe itching all over the body. This phenomenon is repeating exactly after one year. The skin layer is peeling off on its own. I don’t see any improvement, though the others looking to her visible front, may not agree. May be, I know too much about the problem. (Actually, what I know is too little, but, the others know nothing and rely on their eyes and hope.)
Sensed a different and bad smell in her urine and got it tested. Infected. Pus level – 10.2 and bacteria level - ++. Dr.P suggested a very mild anti biotic Zo. No fever.

08.12.09:Nov-Dec period last year too was similar. It is 36 days since the last transfusion. She appears normal although her Hgb count is falling. It is expected to touch 5 in the next three to four days. Now-a-days she complains of sharp pain in the forehead, temple area, and areas around the ears and eyes.

11.12.09:CBC again although there is no visible problem. Hgb- 6.7; Platelets – 8000 and WBC – 2800. 3 PRCs and 4 PCs transfused. Urine tested again. Pus level remains the same and bacteria level also. No visible indications of such an infection. Low WBC level might be the reason for absence of fever. Fever is due to the battle between the antibodies and bacterias. Every type of bacteria induces production of a unique WBC in the body. The type of bacteria and the WBC that can counter itremembers the bacteria and whenever the same type of bacteria attacks the body, the data stored in memory helps in production of the right type of WBCs. which can effectively counter the bacterias. There are as many types of WBCs as the number of types of bacterias encountered by the body. Bone marrow failure has resulted in low WBC level in A and that probably might be the reason for absence of fever.

22.12.09:High fever and severe shivering since noon today. CPR from Tamil Nadu arrived today and came home to meet A. I had to be with him and hence, asked A to take Crocin tablet. By the time I returned late night, she had swallowed 4 Crocins, but, the fever remains unrelenting.

23.12.09:Admitted in OCH. Being loaded with all types of antibiotics. Her face and palms are reddish. Face is fluffy. (These might indicate malfunctioning lever.) Urine test shows presence of proteins. Fever came down to normalcy on the 26th. A is without sleep since last two nights and is seeing all sorts of scenes.

26.12.09:4 units of PCs have been transfused. One unit of WB was to have been transfused, but deferred due to high fever. (It was done on the 27th night.) Fever was continuously in the range of 103-105. It has not relented till the morning of 27th inspite of injections and crocin.

29.12.09:Discharged today. No fever since yesterday. I asked the doctor whether the bacteria has been successfully fought against and the fever brought down or her WBCs have been killed as the result of which fever has disappeared. Her latest blood count shows WBC level of 1,500. The resident doctor could not understand my question, or perhaps, did not want to and tried to explain irrelevant things. A is back to ‘normal’ on the basis of reports. A surprising aspect of today’s report was the DLC count. It is the analysis of WBC. There are chiefly two types of WBC, the polys and the lymphocytes. The polys are generated in the marrow and should be in the range of 50 to 70%. The lymphocytes are generated in the lymph nodes and are supposed to be in the range of 20 to 40%. In A’s case, the polys were consistently in the range of 10 to 20% and lymphs 70 to 80%. The polys were 70% and the lymphs 25 in today’s report. It indicates very feeble attempt by the marrow, he said. Is it a sign of hope? I asked. May be or it might be just a sporadic phenomenon.

19.01.10:Went to meet Dr.P for CBC. He has shifted to his new and own building. The report was as usual, platelet around 10,000; Hgb around 6 and WBC around 2,500. I told the doctor that my resources were dwindling and asked him if he could tell me how long it’ll pull on. He said that he was equally helpless and would only talk about probabilities and would not predict anything. If it was blood cancer, there could be a clearer assessment. Aplastic Anaemia is a ‘nasty’ disease, he said. He further expressed his surprise that she continues so long. His other AA patients either recovered within three months after the ATG treatment or succumbed to the disease within one year. “Everytime you come to my hospital, the thought, ‘Oh! She is still alive,’ comes in my mind. It is really surprising that she continues despite platelet counts being so low as 10,000. Nature’s ways are mysterious” he said. I asked him whether there was any limit to the number of transfusions the body would accept. “Yours and my blood gets destroyed but are regenerated within. Her transfused blood also gets destroyed after its life span. In the absence of regeneration, there is a need for transfusion. So, transfusions can go on and on. There may arise some complications due to the transfused blood. These are all only probabilities.”

27.01.10
Admitted in OCH in situation similar to last admission. A had unrelenting high fever, as high 106*F. Heavy rush in the hospital. Had to wait in casualty ward for four hours. Admitted in CCU as there was no bed available elsewhere. It would be very expensive. Talked with the Admin manager. He assured that the charges would not be of CCU ward, but of SPW. The doctors fought a battle with the fever. I am surprised at their lack of faith in their medicines. For an unrecognizable fever, two antobiotics were going down her veins and Crocin was also being given, just in case. Four units of PRC/WB and two units of PC were transfused. The fever would come down and the blood transfused. Fever would shoot up in the midst of transfusion, transfusion suspended and the battle between the antibiotics and fever would resume. The cause of fever was not rooted out till the last day. It came down with intake of medicine, only to rise again in a couple of hours. One of the antibiotics was changed. The new one caused heavy reaction in her and was stopped instantly.There was an anti-climax today. I showed my throat to an ENT doctor. He suggested CBC for me. The result was surprising. My Hgb level was only 6.1. I’ve donated blood as many as 80 times. Never was it suggested that I may be anaemic. There were no indications either of a low Hgb, like gasping for breath, exhaustion etc. I do not want to shift the focus from A’s treatment.
02.03.2010
Went to meet Dr.P. Advised two units of PRC. Plt count was 17,000, Hgb was 4.8, and WBC was 2,200.

06.04.10
3 units of PRC. WBC: 2,400; Hgb: 5.5; Plt: 18,000;
11.05.10
3 units of PRC and 2 of PC. WBC: 2,400; Hgb: 5.6; Plt: 7,000;
26.06.10
3 units of PRC. WBC: 2,300; Hgb: 5.8; Plt: 16,000.
14.07.10
Had been to Pune. A was by her mother’s bedside on the 4th, 5th and 6th. Her mother breathed her last on 6th evening. A started bleeding on the 10th and we returned on the 13th by bus. She was bleeding heavily enroute. 4 units of PC and one of PRC transfused. Bleeding stopped. But she is having continuous fever from the 17th. There is blood in her spit.
24.07.2010
The fever is unrelenting. It rose upto 105 on occassions. Daily dose of Crocin had but very limited effect. She also has sever pain on her right neck, below the ear. The urine is dark reddish. Chest is full. there are spots all over her limbs. The spots are not plain, as is normally the case, but like small boils, ready to burst and ooze out blood. This time there is new phenomenon. There are red spots in her eyes, suggesting slight bleeding in the eyes. I had a discussion with Dr.P. He said that she has severe infection. She has to be admitted and subjected to antibiotic injections. I delayed hospitalization and brought her on saturday, the 24th. CBC shows very low platelet (4,000) and Hgb (4.4) counts.
Transfusion has been a hectic experience since last six or months. This time it has been really testing. On the one hand, fever is not responding to antibiotics. On the other, her veins are too thin to bear continuous transmissions. Vesofix needle for transfusion had to be changed three times. Dr prescribed 4 units of PC and two units of PRC. There was no improvement in platelet count. Four more units of PC and one of PRC were given. After a gap of one day, there was splash of spots all over her body, indicating low platelet count again. Two more and two more of PC were given. A total of 12 units of PC and four of PRC have been given. Blood from within retracted when the last unit was being transfused. Coimbatore Ram temple secretary Shri Shankaran’s brother had died of aplastic anaemia. I had enquired about his last days, how he had slowly faded. etc. His last transfusion was when the blood refused to enter and retracted. In A’s case, her pulse has been continuously in the range of 55 to 60 today. It suggests a weak heart beating, not strong enough to suck in blood. The BP was also 90/60 and 80/50. BP has normalized now. Her urine colour continues to be red. Since last two days, her stools are black, indicating bleeding somewhere in the digestive track. Indications are not positive.
Yesterday, in the noon, she suddenly asked who it was at the window, Her mother had seen figures on the last two days and asked this same question many times. I had a vision in the early hours of the day we returned from Pune. It lasted for two or three seconds. I woke up and A’s face looked bright yellow. I was in doubt and asked many others. They could not see yellow colour in her face. Dr.P also did not agree. I forced him to test her bilirubin. It was around 4.0. Yes she has feeble jaundice.
A surprise aspect was increase in body weight. It was 42 kg.
The doctor visited at ten in the night and said, “She may have to come frequently and get platelet infused. Her body is not taking the platelets or is destroying those at a fast pace. I’ve asked for discharge tomorrow.
29.07.2010

A discharged today. Her bloody urine and bloody stools continue. Perhaps Dr is helpless or is bothered about his hospital which is not even a month old. (He was running a clinic. Now, he has built a big all-in one cancer hospital.) A is relieved that she is back home, at the same time, fear is writ large on her face as bleeding has not stopped and spots have not vanished even after transfusion of 12 units of platelets. Probably, she may have to go back in two or three days.
None here knows in detail and are hoping and saying that she will be perfectly all right. My assumptions or assessment may go wrong. But, indications are not very positive. I do not mean, death is negative. Death is very positive.

Everytime, when she is in hospital, she struggles and shouts in pain. But, when the indications of low counts appear next time she starts putting heavy pressure on me to get her admitted. This surprises me. Strong urge to live!!.
04.08.2010
A admitted again. She has been heavily bleeding through the urinary track. I knew her Hgb should have dropped below 4. To be frank, I did not want to reach the hospital again. It may seem ruthless, but her position is like that of one struck in a whirl. She needs platelets to stop bleeding, but her body is not accepting the platelets being transfused. Bleeding reduces Hgb level and she has to be given PRC or whole blood. There is more bleeding due to availability of more blood, again platelets to control bleeding. The blood of so many donors going down the drain. I made a feeble attempt to make her see the glaring truth, but she insisted on getting admitted. now, we are in hospital. She has been shifted to ICU, (Neutropenic care ward), with all accessories, like an astronaut. Again 8 PCs and 4 PRCs were transfused. There was no semblence of improvement. Dr suggested 4 more PCs on Sunday. I told him that I’ll take her home after a visible improvement. Then he suggested an SDP (single donor platelet). Bleeding will seem to have stopped. Jayesh donated and I brought her home. Surprisingly, Dr easily accepted my suggestion for discharge on Sunday after SDP transfusion. Hope this remains last of hospital visits.
11.08.2010

Two days passed off without bleeding. It started with full vigour, today. I went out for a few hours so that she would use the urinal and see for herself the extent of bleeding. She was upset and wanted to know why it had not stopped. I told her the number of PCs transfused in the last ten days. She was really upset and sad. “Is there no way? Should I die?” she asked. I was silent. In the night, a few minutes back, I casually told her that “the ordinary people, who can not face it, are not informed in advance and death comes suddenly. But, for the brave one, death comes after giving him/her an advance information.” She could not take it as a compliment. Let us see what is in store!!
20.08.2010

Human nature is queer. I told A everything about her ailment, the ineffectiveness of treatment, reason for bleeding and high fever. That was on the 11th. She was upset, totally in a dejected mood, only for two or three days. That is the way Maya works. Now, she is back to her usual self. Bleeding continues.
14.09.2010

Went to Dr.P. CBC. 5.2 and 8000. Advice for 2 PRC and 2 PC. Transfusion went on without any visible problem.
14.10.2010

Went to Dr.P for transfusion. CBC. 5.0 and 7,000. A walked to the ward. It took a dramatic turn as soon as PRC transfusion started. Fever shot up. Tremors tossed the body. She was shifted to ICU, put on Oxygen and other gadgets. BP went down (70-40), Bilirubin content in blood (Jaundice) shot up (34) and oxygen level was down (83%). Her veins were failing, (8 vesofix were planted on her arms in three days and doctor suggested use of central vein.) 6 units of PRC (one was aborted) and 6 units of PC were transfused. Loads of injections prescribed as usual. I refused to buy 12 injections. Dr said, he needed free hand. We had a long discussion. I told him that he need not be aggressive on treatng these symptoms. The disease has not been cured and we are fighting with trivial effects of the disease. I asked for discharge and A was discharged, but with an Oxygen cylinder, on the 16th. I am writing this on the 1st of Nov. She continues. Surprisingly, Jaundice has vanished, yellowness in her eyes has vanished. I tried putting off the cylinder for few hours. She is totally on bed. Can not get up on her own. I’ve started giving her sedator pill and I am having uninturrepted sleep since last few days. Sarisha from SA was here today.
14.11.2010

It has been hectic since the 4th. She has continuously high fever and severe tremors, mostly in the evenings and the whole night. The fever drops down to 101/102 and she dozes off at five in the morning. Urination is much less than the fluid intake. Urine is bright yellow in colour and a very strong smell. The respiration is 30 to 40 (Normal is 15 to 18) and the pulse rate is 100 to 130 (Normal is 72 to 80). She gets up with difficulty and can not sit for long. Her head is not stable. In the nights, she blabbers sometimes. Her words are not clear. Hunger has vanished. Today, she complained of blurred vision. The consciousness and awareness seems to be alive. Motions have stopped since last two days. The end seems to be very near. (I told someone over phone that 1947 is born and August is visible!!)
17.11.2010

Her condition is like the climate of Capetown. Now Sunshine and clouds in the next five minutes. It is high fever this moment and low fever the next. It is shivering cold this moment and hot the next. Like her mother in the last days, she demands fan to be switched on and within minutes, doesn’t want it. Yesternight, there was a different phenomenon. She complained of Chest pain. (She has done it so many times previously.) This was different. There was perspiration on her forehead and other parts of the face. I checked her temp. It remained high at 103. In few minutes, she dozed off. After ten minutes, she again complained of chest pain. This time, it seemed more severe. There was perspiration again, without fall in temperature. Her pulse rate touched 130 and breath rate was 40. I can’t come to any conclusion, without the relevant instruments.
She started talking about where she has kept the jewels, the silver plate and other costly items. I don’t know, whether it was a speech resulting from an acceptance of imminent death.
17.11.2010
Respiration rate started rising steadily since morning. It touched 55 by 4.15PM and was 60 at 4.30. Then, pulse became more and more feeble. Finally, she became silent at 5.07.
Last Moments

There were many moments in the last two and a half years which seemed ‘last’. The whole of last fortnight seemed one, especially the 1st, 3rd, 5th, 7th, 10th, 13th, 14th and the 15th.
Last moments started with the experience in the night of 16th, which I percieve to be a cardiac problem. The end appeared certain within the next few hours. I started observing pulse rate and breath rate every twenty minutes. It was 130 and 40 at 1.30 and continued to be the same till 4.30. It was in the range of 90 to 100 and 24 to 28 upto 9 in the morning. She vomitted all that she ate and drank in the morning. Afterwards, the pulse rate and breath rate started gradually rising. It was 130 and 45 at 2.30 in the noon. Fever also was continuously around 104. But A never lost consciousness and was alert almost till the end. She recognized Akshay and Vandana who made an unplanned stopover and was talking to them. She talked with Sugandhi at 4.15 over phone. My doctor friend told me that breath rate of 55 was almost irreversible. It was 4.33 and she said, “I feel I may not survive this night. Phoneup Jayaraman”. I connected and gave her. She merely said, “My state is ver bad. Not able to talk.” Then I connected Jayalakshmi and she repeated the same words. I connected Sugandhi and told her that her state is very critical. Sugandhi did not allow me to continue and said, “Nothing will happen. Do not worry.” I could not but laugh at her wishful thinking. A was not in a position to talk. She asked for some milk. I first gave her a few drops of Ganga Jal. It was 4.50 then. I fed two spoonful of milk. The second spoon of milk stayed in mouth, probably due to very rapid breathing. I started started the laptop and started playing 15th chapter of Gita. It was 4.58.
She started the last breaths. It was 5.02 or 5.03. Those breaths were with sound, muscular strain and oral. The face had been normal and pleasant till then. It turned harsh. This continued for a few minutes. Breathing stopped at 5.07.
Vandana continued to look for pulse. She placed her ears near the mouth to confirm. She wanted to be doubly sure before announcing.
I had dialled Dr.Mohan Joshi at 4.40. I dialled him again 5.08 and asked him to come for certification.
I have always had a wish to see Death. Probably one can not have clearer vision of dying moment.
Probably, it was a very peaceful and conscious death.