6 Month post transplant update

It is often said that recovery from HSCT is a roller coaster ride. May I say that is an understatement? LOL   Nonetheless it is now 6 months since my transplant in Moscow by the wonderful team at Pirogov. At first, my recovery was gong very well with little ups and downs indicative of a roller coaster. Then the proverbial wheels fell and all hell broke loose. I am happy to report to you all that things have calmed some recently, for which I am relieved. In other words I am being pushed into the back of the seat again as the roller coaster is moving up again.

I've talked about stress and what a negative impact that has on the recovering HSCT patient. So far I have been having some success trying to manage my stress by meditating. Also by staying busy around the house to keep my mind off from the stressors. My recovery will definitely benefit from a decreased stress level. During the last two months the weakness in my legs has returned, which I found very unsettling. Upon returning from Moscow my legs felt normal with regular strength. I was so pleased with this development. Which is why it is equally disturbing when the weakness reared its ugly head. My neurologist prescribed a new drug to help with walking called Ampyra. Shortly after starting the Ampyra is when my leg strength returned. Now, I know this could be a false positive, only time will tell. Regardless, I'll take what I can and at this point in time. I am happy my legs feel so much better. WOOT!

Sometimes its nice to be surprised by an unexpected consequence. Ampyra may have given me another benefit that was not discussed with my neurologist. One of my MS symptoms is a hoarse voice. I am scheduled to see a voice specialist late next week as I have tried all kinds of things to help me improve my speech. Nothing has worked up this point, which in not atypical for people with neurological disease. Many times over the years my doctors would look at me and kind of shrug. Like they are saying, I really don't know Mr. Olson. Many of us MS patients know that look, maybe like you are a hypochondriac Mr. Olson. I may finally know why my hoarse voice has never been responsive to prior treatment attempts. Since taking Ampyra my voice is much clearer and stronger. Again, I hope this is not a false positive, but it makes a lot of sense that Ampyra could help as it works on the Central Nervous System (CNS). If my vocal cords are sending incorrect information to my brain then I could see my body producing too much mucous to my vocal cords resulting in a hoarse voice. Certainly I shouldn't get too far ahead of myself, but I am holding out hope this is what is going on.

Since starting Ampyra and taking another medicine called Tizanadine my stiffness has lessened. Its not completely gone, but it is much better. Well good, that's awesome you say. It is good, but like so often is the case, there is a down side. Namely drowsiness. Just when I feel that I have been making some strides against fatigue, there is a side effect that inhibits sleepiness. Crrraaapppp! All I can do is push myself ,even when I just want to drop and snooze. All in all it does feel like I am moving in an upward trajectory with my recovery from HSCT.

There has been a great deal of discussion on the Russia HSCT for MS forum on Facebook about whether we should get the shingles vaccination after HSCT. Right after being diagnosed with shingles I reached out to Dr. Fedorenko about when I could get a shingles vaccine. I did this becasue my primary care doctor wanted to give me the vaccine. He replied that it was safe 6 months post transplant.  As conversations developed on our forum we all became confused. We were told upon discharge not to get any vaccines as it can reactivate our auto immune disease. Without question there is no one in our group that would like to reactivate MS. In an attempt to clear up the confusion I again reached out to Dr. Fedorenko for a clarification. Here is what he had to say. Please keep in mind this is what I perceive him to say and what his belief is in terms of the shingles vaccine.

• Patients with autoimmune diseases should not get the shingles vaccine. The exception would be if shingles case is severe and often (wait at least 6 months, but 12 months is better)
• It is not recommended for blood cancer patients either
• Perhaps use 1 year antivirus prophylaxis (I get the impression this is a case by case situation)

Armed with this new information I will be seeing my primary care doctor again to see if I can take an antivirus medicine for the next 6 months to prevent another shingles episode. Think its necessary to be proactive here and do what I can to prevent another bout of shingles. Trust me folks shingles is no walk in the park. My shingles is around my left eye and there is a risk the eyeball could be involved next time. There is some very stressful events ahead for me which could trigger another episode. Divorces are horribly stressful and it is unavoidable. So all I can do is try to keep the virus at bay the best that I can.

MS is a lonely disease

Was chatting with one of my stem cell sisters the other day. Was very surprised to hear her tell me that 4 or 5 relationships, from our group in Moscow, have had their relationships come to a screeching halt. She was one of them as her fiance' broke off their engagement. Another lady had her husband of 20+ years leave her and file for divorce. My marriage was 9 years old. Mind you there was probably somewhere around 18 people in our group. Quite an astonishing number percentage wise.

The other day when I was at my neurologist's office I informed her that Alicia and I were getting divorced. She said unfortunately it happens all too often to MS patients. My guess its that it would be a very rare occurrence for an MS patient to break off a relationship. I'm sure it happens, just not in the kind of numbers that the healthy one in the relationship leaves. Being pragmatic I understand that we are a burden on others. Trust me we get no pleasure in that regard. The last thing that I want to be for my wife, my children, or my family is a burden. That was probably something that drove me to get HSCT after all. Didn't really think about it overtly but I am quite sure that was a fire in my belly.

MS is a lonely disease in a number of ways. Relationships are only one part of it. Albeit a tremendously large part of it.

A spouse or significant other has the ability to walk away from MS at any time they choose. Do you think it is remotely possible for the MS patient to divorce their disease? Is it a coincidence that in the examples explained above it was all the healthy ones in the relationship that left? What is commonality of the people who leave the chronically ill to fend for them selves? Is it selfishness? Sociopathic tendencies? What has happened to humanity? Maybe their fingers were crossed when they said "in sickness and in health"

Today was another slap in the face for me. At a time that I will need medical insurance the most, I will be losing it in short order. My insurance is through my wife's employer so when the divorce is over so is my insurance. In an earlier post I talked about stress and how detrimental it is for the recovering HSCT patient. In February my heart arrhythmia's returned and I had a second AFIB ablation on my heart. Probably as a result of stress. Yesterday a new symptom arose with some sores on my eyebrow, forehead, and scalp. Today it worsened to the point where they are now open sores and leaking fluid. Made a trip to my primary care doctor and was diagnosed with shingles. She said to me "Ken, it was triggered by stress". She also told me that the ulcers are around the eye so there is a risk that an ulcer could form on the cornea. If that were to happen I could lose sight in that eye permanently. Think I was just served up another order of stress.

I am not a happy camper for sure. The nurse bandaged me up to cover the ulcers. Think she over did the bandaging. HA!

My mother in law has had shingles in the past and told us they are painful. She is right. Mine will only get worse before they get better. Also have a headache too boot.

Trying to manage the stress but obviously still need to do better. Stress for the HSCT patient is much more damaging than it is for a healthy person. But what do they care anyway. Not their problem anymore. Vent over. Till next time friends.

Surprisingly vindicated......

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.

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.

Day +96 since the transplant

Wow, 96 days since the transplant. Time is really flying by quickly. Guess I am very glad for that as my immune system still has a ways to go before it is fully reconstituted. Honestly though I have been extremely fortunate that I have been very healthy since the transplant. No flu's, one minor cold, no infections. I better find some wood to knock on before I find myself jinxed and wind up sick as a dog. LOL

Feel very blessed to have been able to get the treatment when and where I did. People have already asked me if I had any second thoughts or regrets about getting a stem cell transplant. Gosh no! One of my most concerning symptoms is so much better already that it makes me believe that the transplant is a huge success. That symptom is weakness in my legs. Prior to treatment my legs were weak like rubber. Since the treatment my legs are solid and getting stronger. Had been told that newer symptoms had the best chance of recovery versus older symptoms. Leg weakness for me had started about two years ago. For this reason I am very optimistic that my future quality of life has been secured from the ravages of MS.

When we were at the hospital in Moscow, Alicia and I were told by Dr. Fedorenko to expect positive results from the treatment beginning in months 3 to 6. Well the time is here. It's now been 3 months and I am highly encouraged by what I am experiencing already. Hopefully that means more good things to come in rolling back some of the deficits caused by this insidious disease. I've read many blogs and reports from other patients that good things come for many months to a few years after treatment.

Upon returning from Moscow I found that the burning sensation in my legs and feet were gone. However it was short lived as the burning sensation slowly crept back. Makes me think that it was probably due to the steroids that were given to me during the treatment and upon release from the hospital. Still holding out hope though that as my recovery marches forward the burning sensation subsides and/or goes away again. Always have to keep in mind that the recovery is still in the early stages for me and my body. It's just hard to be patient sometimes. Really trying to focus on staying positive in my mindset and outlook. Dr. Fedorenko really stressed how important it was to stay positive and I agree with him 100 percent.

Had a little bit of a setback in my health this past month. Wanted to share this for other people who are looking at HSCT as a possible treatment but are concerned about heart issues. Prior to having my treatment I begun to experience AFIB and had an ablation to rectify the arrhythmia. It seemed to be a success. This was shared with Dr. Fedorenko prior to the testing they performed on me at their hospital. He told me that AFIB was not a disqualifier, but they were going to perform extra testing to verify that my heart could withstand the chemotherapy. Obviously my heart tested well and I tolerated the chemo with no incidents for my heart. Everything was going great for my heart until a few weeks ago. The arrhythmia started up again. Darn! Went back to the doctor who performed the ablation. Turns out the arrhythmia had changed from AFIB to A flutter. Unfortunately it meant another ablation. So last Friday I went back to the hospital for a second ablation. Wanted to share this with you all so that people who have heart issues understand that it is not an automatic disqualifier for HSCT treatment. Dr. Fedorenko will look at this on a case by case basis. 

The biggest issue that I am still dealing with concerning my MS symptoms is tiredness. It is still giving me a lot of trouble. Hoping that the ablation helps to give me more energy as it is possible that some of the tiredness is coming from heart issues and not so much from MS. It's so easy to blame every health issue on a chronic disease when there could be other underlying health issue causing problems. Only time will tell on that one. The bottom line for me is that tiredness is a big problem for me even after HSCT. Hoping that now I am three months post transplant some relief comes my way on this issue if MS is a major contributor.

All in all I am very happy and satisfied with how things are going for me after HSCT. It certainly gives me hope for my future where I was feeling like my future was trending toward hopelessness. Looking forward to getting a year under my belt of recovery and having my immune system reconstituted. 

Be well!!!