Losing control, part II

4/8/11
There is a terrible sequel to this story: Malati had to repeat this first surgery one more horrific time. Yes, another open heart surgery! Three weeks after Malati’s first surgery on March 17 she began to feel ‘wrong.’ She developed a persistent low grade fever, nausea, and a cough, all symptoms that resembled the flu or a simple cold. As a precaution I called Loma Linda, Malati’s medical facility, hoping to gain access to their network, but I was told that they could do nothing to help us and that we should take Malati to an urgent care center. They utterly refused to deal with her in any meaningful way. I was astounded. A patient who was just three weeks out of surgery and who was having problems could not get access to their help? Not knowing what to do I took Malati to our primary care physician, and when he called Loma Linda even he was brushed off and told to just put her on antibiotics, which he did. What Loma Linda did seems highly negligent and uncaring to me. Still Malati insisted that something was wrong. In the end I took her into the emergency room at Loma Linda and after 24 hours of waiting and testing they discovered the cause of her flu like symptoms: she had massive amounts of fluid built up around her heart and lungs. This is called effusion and is the result of inflammation. It is something that occurs in only about 4 percent of patients who have heart surgery. Malati’s life again was in imminent danger. This fluid builds up and then solidifies into a jelly thus encasing the heart to the point where it can no longer beat and the recipient has a heart attack and dies. She was just hours away from this situation. So a recovery that seemed to be going well suddenly turned deadly. Once again Malati was taken into surgery; only this time the doctors decided to not only relieve the effusion, but also remove her pulmonary valve outright and scrape out her heart muscle, thus reducing the size of her heart that had built up as a result of the stenosis. When a restriction exists within a heart the heart muscle “bulks up” and strengths itself so it can push more blood through the constricted valve or other path way. If that restriction is removed and the pressure is suddenly reduced the over strengthened heart still continues to work with the same force to the point where it “implodes” or crushes into itself and quickly fails. The patient dies of a heart attack. This is the reason the heart muscle must be scraped out and weaken. The medical world calls Malati’s condition a “suicide ventricle.” This, of course, was a much more evasive surgery than the first procedure or even the first surgery, and is what should have been done at the onset. Yet hindsight has 20/20 vision. This second surgery would drain the fluid buildup around the heart and lungs, remove the damaged pulmonary valve completely, scrape out the muscle of her heart and replace the inflamed portion of her pericardial sack with a bovine tissue. This was to be a much more involved procedure and would take over eight hours. Two open heart surgeries within less than a month! Could a body survive such extensive trauma within this short span of time? Needless to say the answer is yes and the surgery was successful and Malati to this point is making good progress. But I remain guarded. Believe me the emotions of the second surgery are no less than the emotions of the first!

4/13/11

Today we are almost four weeks out from the second open heart operation and Malati has gone to the cardiologist for her third echo cardiogram since the surgery. Everything is going well except the doctor is concerned that the amount of leakage or back flow blood into her heart is excessive. We are hoping her internal organs will adjust to the new situation over the next few months. Her liver is apparently taking too much pressure as a result. This is a problem that will eventually force a future procedure or surgery to place a tissue valve inside Malati’s heart. A part from this Malati is doing well. The fluid buildup did not return.

4/16/11
During the course of these two operations I am still deeply concerned about Malati’s condition and I fear she is not properly looking after herself. After the first surgery she was out jogging only two weeks out. Now she has left our home and is living alone again only four weeks out from the second surgery. She spent the weekend driving around Los Angeles visiting friends and staying up late. The doctors told her to stay quiet for six to eight weeks, but she is not heeding their advice. Malati is also not keeping her wound covered as the doctors asked her to do. They told her to keep it away from UV light from the sun in order to minimize scare mark. Instead she is actively showing her scar by wearing low cut shirts. I fear a relapse, but there is little I can do. She is refusing to acknowledge her condition and she has become hostile to me when I try to get her to slow down. Sukulina is also not supporting me. In fact she helped Malati move out of our house after only 4 weeks since the second surgery without even telling me. The doctors asked her to stay at home for six to eights weeks after the first surgery and this is the second surgery. A full eight weeks seems fully justified. Sukulina’s mind set is beyond my comprehension. I feel very alone and I am extremely concerned for Malati’s condition.

5/24/11

A month has gone by and Malati seems to have calmed down. She looks well and is finally keeping her wound covered. She spent a few days with Nikki and Evonne, and before she came to them, I quietly asked them to talk to Malati to calm her down and look after herself. I am not sure who said what, but ever since then Malati has turned around. I am now paying for her food and mortgage, plus I have given her a job to help her get her life back on track. This weekend she is moving out of the desert to our Riverside apartment so she can go to school down in the Riverside area. There is no future in the desert for a young girl. Malati herself came to me and asked for the apartment. I had suggested this months ago, but at the time she vehemently refused anything coming from me. Our relations appear to have improved. Perhaps with all the medications she was taking and just because of the extreme stress of what she went through she was acting out and someone had to bear the brunt, and that was me. I am not sure what has caused the turn around. Perhaps Nikki and Evonne’s help made the difference. Regardless, I am delighted.

I am still concerned to know how her body is adapting to a heart without a pulmonary valve. In a few weeks she will go for another echocardiogram and then we will know. I do not want her to go through another surgery to place a bovine valve in her heart. This whole affair has been extremely emotionally draining for all of us.

I have been asked how much my years of sadhana and spiritual study allowed me to cope with this crisis. I wish I could report that it makes a crisis easier to deal with, but it does not. I’m sure I experienced the same confusion, hopelessness and fear as any other person. Did I chant? Did I pray? Did I plead? Yes I did. Did it help? I suppose, but it didn’t remove the fact that I had to go through this pain and feel every possible emotion. There’s no way to know how I may have dealt with this crisis had I not experienced years of spiritual discipline. And what if the outcome had been worse, would I have lost faith? I’ve seen too many families broken by this kind of personal tragedy. Would I be any different? Besides, I only went through a partial test, suppose it had been the ultimate test. For the first time in my life this crisis brought me to a state of total loss of control, complete helplessness, the point where the only recourse was to God. I am grateful to a few close friends who helped me through this.

Postscript
04/25/12

Malati has since moved out of Riverside away from the apartment and away from my close support. In September 2011, only three months after being in the apartment in Riverside she decided to move to Washington state where Keshava, her brother, is living. For me it was an abrupt decision. One weekend she just packed her bags and moved away. It was a typical Malati ‘just do it’ kind of decision. It’s absolutely true that I would have counseled her not to do go, but I was not given the opportunity, I was out of town that weekend. Her brother said he could get her a job at the local Costco where he works. From my perspective it was the end of Malati’s education, it was removing herself from both her family and medical support system. It was not the right time to make such a radical change in life. I would have preferred she get her school back on track, give her body more time to heal, and stay close to her family and doctors where she could be monitored, at least for a year. We were providing her all the necessities of life, an apartment, food, and utilities, all she needed to do was focus on completing her education. But this was not to be. But what disturbs me more than Malati leaving was Sukulina supporting Malati’s abrupt decision to leave. Why couldn’t Sukulina and I sat down as a united team and tried to persuade Malati to stay back and at least finish some more school for a few more months, and then if she still wanted to leave we could have helped her. But Sukulina and I are not on the same page when it comes to these matters. This causes me great pain. As it turned out Malati moved to Washington state got a job over the Christmas vacation with Costco, but was not rehired as a full time employee. Subsequently, she experienced chest pains and had to return to Loma Linda for a checkup, yet no explanation could be found for her pains and so she returned to Washington. At present Malati lives in her own apartment with her dog and is working in a dairy store. She seems content and so I accept her decisions, although I’d much prefer to see her in school. Everyone follows their own path and finds their own way in life, and even though I have tried to guide Malati and the other children in ways that I think are in their best interest, I realize that in the end people do as they wish. One learns by good advice or one learns by life experience. Being a parent is often a desperate affair and at a certain point there is often no choice than to just let go of those you care for.


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