Back in 2013 I was diagnosed with MS by my neurologist. She isn't just any neurologist as she is an MS neurologist. She only sees patients who have MS and no other neurological conditions. Personally I have a lot of respect for her as she was first neurologist to diagnose me with MS after having symptoms for roughly 13 years. I've learned over the last few years that she is no only highly regarded in the San Antonio area, but is well known nationally.
Moving forward to 2014 I had brought attention to her about a treatment called HSCT. She was unimpressed about it at the time and said she could not endorse an unapproved treatment for MS. She still preferred the usual suspects of FDA approved DMD's (disease modifying drugs) and started me on Copaxone. My conversation with her pertaining to HSCT is very clear in my mind. Her first point is that I should wait for the FDA to approve the treatment. Then get it in the US rather than going abroad. I told her that I was denied for the clinical trial in Chicago and it would be many years before FDA would approve the treatment. Time was not necessarily on my side. Secondly she said that she was concerned about the medical treatment I would receive in places like Germany, Russia, and Mexico. Thirdly she was concerned that I would be throwing away money on a hope and a wish. Her point is well taken there because it is a lot of money and we all know there are swindlers around the globe that are more than happy to separate you from your money. They do this with no hope of bettering your health.
My conviction to receive HSCT was not affected by her points to me that day. If anything maybe I was more hardened in my position because I had done my homework on the treatment . In my mind it was still the best option to fight the MonSter. My mind still needed to be put at ease that ablating my immune system was necessary. Thought it through and decided to get a second opinion on the MS diagnosis before going through the HSCT treatment. Another doctor that I was seeing recommended to me that I see a neurologist in the Dallas area that he held in very high regard also. Happily get a very good recommendation from him I set out for a few trips to Dallas. Again I was very impressed with this neurologist and was pleased at how thorough she was with her diagnostics. Unsurprisingly, she too concluded that I have MS and because there was a new lesion in my neck she surmised that the disease is still active. Simply meaning that I am still in the relapse remitting stage and have not progressed to the secondary progressive stage. This is a very important distinction to me because HSCT is thought to be more effective for RRMS patient. It is still effective for many SPMS patients, but a higher percentage of RRMS patients respond positively to HSCT. With the second diagnosis of MS from two highly regarded neurologists I felt it was a no brainer to travel to Moscow and be treated by one of the, if not THE, best HSCT doctors for autoimmune diseases in the world.
So fast forward to today's time. I saw my primary care doctor a couple of weeks ago. She was recommended to me by the MS neurologist in San Antonio who first diagnosed me with MS. Well, my primary care doctor was quite impressed with the results of my transplant. She thought it would be a good idea for me to go back to my neurologist to speak to her of the nagging spasticity in my legs and body. Those things have not really improved for me and she felt there are some medicines on the market that may help me. Honestly I was a little reluctant to go back to see my neurologist because I basically rebuked her recommendations and went to Russia anyway. There have been many stories on the forums of neurologists not taking kindly of patients taking control of their own health care decisions. Maybe its a God complex or an egocentric situation, but I feared things were not going to be well received by her.
Today I was simply floored be the reaction of the neurologist today. She has gone full circle in her opinion of HSCT. Could not believe it was the same person who was trying her best to talk me out of such heresy as going overseas and paying huge sums of money for unproven treatment. The words out her mouth today sounded exactly like what I was telling her three years ago. Think I was glowing like a newly impregnated woman in the exam room today. Felt totally vindicated in a manner that I just couldn't imagine. She did her level best to make sure I am having my blood drawn and tested regularly. That I am taking the proper precautions from infections. The whole experience today was so relieving and gratifying at the same time. Before leaving I was given a prescription for Ampyra to help with walking and will be getting a higher dose of Tizinadine for the spasticity in my legs and body.
Her comments touched me deeply too. She said I looked great and was very happy that I had HSCT. I really was curious if she had other patients who had HSCT. Guess what, she has and they are doing very well she said. Then very surprisingly, she railed on the pharma companies. Think my eyes almost bugged out of my head. Kind of Marty Feldman like. LOL
Felt like I was on cloud nine today. Its something that was really needed for me at this time. Conviction payed off in a really big way. Stay true to your heart is a good way to thing about it. My health is more important to nobody more than myself. Felt like I was convinced that my best hope for a decent quality of life was with HSCT, regardless of the naysayers. Am so glad that I stood my ground and went against the establishment and prevailed. So glad to have my MS neurologist back on my team.
Our boxers are in my corner
Wednesday, April 26, 2017
Sunday, April 16, 2017
Day +151 Post Transplant.........MS symptoms flare
Today is day 151 since my stem cell transplant. Exactly 5 months to the day. My recovery had been going about well as possibly hoped for until about a month a half ago. Things have headed south for my recovery and is finally beginning to plateau. Hopefully I can begin progressively moving in an upward trajectory again.
As I prepared for discharge from Pirogov Medical Center in Moscow I met with Dr. Fedorenko. He instructed me to exercise, eat well, maintain a positive mood, and keep stress levels to a minimum. Well I think we all know that we have control over all of these things with the exception of the last item. Have been exercising, stretching, walking and such to keep my body healing. Over the last few years my diet has included eating lean meats, more fruits and veggies. So it is not cumbersome for me to maintain a healthy menu. As a bonus I love to cook and am always on the prowl for new recipes. Feel that in general I am an optimistic person and say that because its been told to me by many people over the years. The last item, stress, has been the problem for me.
Sometimes life will throw a curve ball at us. No matter how well you try to control the stress, it still overwhelms your well being. Divorce is one of the most stressful things people endure and for the recovering HSCT patient is a bane to our recovery. My wife moved out of the house and into a rent house March 6. Of course the stress has caused my MS symptoms to flare and likely put a whammy on my immune system. This issue is one concern that cannot be ignored. Just within the last couple of weeks the HSCT community has been rocked with at least three deaths that I am aware of. We lost a warrior in Moscow who was still in treatment with a complication from the chemo. Two warriors lost their battle with this terrible disease to infection, even though they were 9 month and 12 months post transplant. Our immune systems are still in its infancy state and that makes us quite vulnerable to infection. It will take a full year to 2 years to have a totally reconstituted immune system post transplant. I am being very vigilant with my hygiene to ensure, as much as possible, I do not end up with an infection that has a chance of turning into sepsis. In my opinion sepsis is the most common cause of death for HSCT patients, I have not seen stats to know for sure.
This divorce will likely come as a total surprise to many of my readers. For many in my inner circle they were completely aware of my marital issues prior to my transplant in November 2016. The original treatment date was set for the end of April 2016. It was cancelled and rescheduled to November. At the time I did not blog the reason why, I just simply noted that it was postponed. The unfortunate truth is that three weeks prior to flying to Moscow for the transplant I was served divorce papers. There was no choice but to cancel and reformulate a support group. However the new support group proved unnecessary as my wife agreed to attempt with reconciling the marriage. Obviously to no avail.
What I want to share with my audience is that Dr. Fedorenko is spot on when he told me to manage my stress levels. Stress has been hugely negative for my recovery. I've talked to several HSCT veterans and we all are in agreement that stress needs to be maintained to as low of levels as possible. Life happens and we are not always in control of the stressful events that get thrown our way. Lately I have been employing coping strategies to bring down the stress and get into a calmer place. My blood pressure has dropped to normal levels again. Been keeping busy to pass the time and not dwell on things that I cannot control. These are some of the things that are in my control and am having some success in this regard. Will need to find some health insurance and it may mean new doctors as my insurance coverage was through my wife's employer. Keeping my fingers crossed that does not cause a total upheaval with my medical team.
All things being equal I really owe so much to Dr. Fedorenko and the entire team in Moscow. Without the transplant, and the gains in recovery that I have experienced, I really do not know what life would be like for me at this time. I will persevere through this horrible experience and be better off for it when the divorce is over. Made a commitment to myself that going forward I am to encircle myself with happy, loving, caring, and selfless people. HSCT has absolutely given me a second chance on life and am going to make the most of it.
Wish the very best for my HSCT family with their recovery and pray that your recovery is smooth and plentiful. Control what you can and manage what you can't. Your HSCT family is here for your support when you need it. Reach out to me if I can be of help to you. Warriors have been here for me and love them very much for it. Feel very gratified that people from around the world have and continue to keep in touch with me. I'm very blessed for the support from my family, friends, and HSCT family.
As I prepared for discharge from Pirogov Medical Center in Moscow I met with Dr. Fedorenko. He instructed me to exercise, eat well, maintain a positive mood, and keep stress levels to a minimum. Well I think we all know that we have control over all of these things with the exception of the last item. Have been exercising, stretching, walking and such to keep my body healing. Over the last few years my diet has included eating lean meats, more fruits and veggies. So it is not cumbersome for me to maintain a healthy menu. As a bonus I love to cook and am always on the prowl for new recipes. Feel that in general I am an optimistic person and say that because its been told to me by many people over the years. The last item, stress, has been the problem for me.
Sometimes life will throw a curve ball at us. No matter how well you try to control the stress, it still overwhelms your well being. Divorce is one of the most stressful things people endure and for the recovering HSCT patient is a bane to our recovery. My wife moved out of the house and into a rent house March 6. Of course the stress has caused my MS symptoms to flare and likely put a whammy on my immune system. This issue is one concern that cannot be ignored. Just within the last couple of weeks the HSCT community has been rocked with at least three deaths that I am aware of. We lost a warrior in Moscow who was still in treatment with a complication from the chemo. Two warriors lost their battle with this terrible disease to infection, even though they were 9 month and 12 months post transplant. Our immune systems are still in its infancy state and that makes us quite vulnerable to infection. It will take a full year to 2 years to have a totally reconstituted immune system post transplant. I am being very vigilant with my hygiene to ensure, as much as possible, I do not end up with an infection that has a chance of turning into sepsis. In my opinion sepsis is the most common cause of death for HSCT patients, I have not seen stats to know for sure.
This divorce will likely come as a total surprise to many of my readers. For many in my inner circle they were completely aware of my marital issues prior to my transplant in November 2016. The original treatment date was set for the end of April 2016. It was cancelled and rescheduled to November. At the time I did not blog the reason why, I just simply noted that it was postponed. The unfortunate truth is that three weeks prior to flying to Moscow for the transplant I was served divorce papers. There was no choice but to cancel and reformulate a support group. However the new support group proved unnecessary as my wife agreed to attempt with reconciling the marriage. Obviously to no avail.
What I want to share with my audience is that Dr. Fedorenko is spot on when he told me to manage my stress levels. Stress has been hugely negative for my recovery. I've talked to several HSCT veterans and we all are in agreement that stress needs to be maintained to as low of levels as possible. Life happens and we are not always in control of the stressful events that get thrown our way. Lately I have been employing coping strategies to bring down the stress and get into a calmer place. My blood pressure has dropped to normal levels again. Been keeping busy to pass the time and not dwell on things that I cannot control. These are some of the things that are in my control and am having some success in this regard. Will need to find some health insurance and it may mean new doctors as my insurance coverage was through my wife's employer. Keeping my fingers crossed that does not cause a total upheaval with my medical team.
All things being equal I really owe so much to Dr. Fedorenko and the entire team in Moscow. Without the transplant, and the gains in recovery that I have experienced, I really do not know what life would be like for me at this time. I will persevere through this horrible experience and be better off for it when the divorce is over. Made a commitment to myself that going forward I am to encircle myself with happy, loving, caring, and selfless people. HSCT has absolutely given me a second chance on life and am going to make the most of it.
Wish the very best for my HSCT family with their recovery and pray that your recovery is smooth and plentiful. Control what you can and manage what you can't. Your HSCT family is here for your support when you need it. Reach out to me if I can be of help to you. Warriors have been here for me and love them very much for it. Feel very gratified that people from around the world have and continue to keep in touch with me. I'm very blessed for the support from my family, friends, and HSCT family.
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