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.