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jstew34 · 10 years

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Slow progression to my new self

As I reach the 4 month mark of my post-HSCT transplant, I wanted to share some experiences that are helping me to achieve a better life. None of these items are Dali Llama worthy, but they have been very helpful for Rachel and me. I want to start with the medical items first as that has always been a tough area for us.

Medical consultations with my oncologist and/or GP doctor have not lived up to our expectations. Rachel and I have learned that it usually works if we play the Good Cop/Bad Cop game. By doing this we can present the material needed and in the end the doctor agrees to the treatment. We tried this approach and it failed miserably. I have an almost 15 year relationship with my GP and I never thought he would let me down like he did.

The medical items we wanted to discuss are the standard procedures and protocols that are used when someone has HSCT. My doctors would not prescribe them. Instead of fighting the doctors, I took the factual/technical approach and buried them with information from the Centers for Disease Control (CDC), independent World Health Organization (WHO) studies and the patient handbook from the first US Doctor to complete HSCT for an autoimmune Illness. I finally received the needed medications.

My doctors want to keep treating me like a standard cancer patient. I am not a standard cancer patient. I am a damn, majestic, medical zebra. In fact, I am so majestic that my stripes actually run horizontally. Medical zebras require a bit of extra care, but we also come armed with knowledge to ask questions and we want to assist the doctors. Medical zebras have done their research and understand what is happening to their body.

This zebra has a problem at the moment. I have low levels of IgG Serum in my blood. This is the first time this has ever happened to me. My current doctor asked me to contact my HSCT doctor for guidance. The guidance was simple and straightforward; provide IVIG at a level of .4g/Kg every 90 days. HSCT doctor stated this is a normal problem and the IVIG infusions will help my immune system recover faster and I will feel better overall. The infusions would only be needed until my body starts producing enough of the good juice on its own. My local doctors refuse to do this. I could get mad and battle it out with my GP and oncologist, but I decided that it’s time for a change. I made an appointment with a different oncologist at a different hospital and will hopefully get the appropriate care.

Before HSCT I never would have thought of making a decision this soon concerning my medical care. But this majestic, horizontally striped zebra deserves the best care possible. I really don’t understand why doctors wouldn’t be excited to take my case. I have to be the first non-myleo HSCT for an autoimmune disease they have seen and maybe will ever see. I truly am a grand science experiment.

Personally, things are progressing slowly. There are some areas that we noticed an almost immediate improvement, but other things have been slower. I am bit disappointed that I am not further along physically.

Month one -Rachel noticed that my voice and balance have improved. I noticed that my vision improved. There were areas of concern, pain levels were more increased and spasticity was a problem. I was very weak and had difficulty walking. I had many days of intense fatigue.

Month two – Pain becomes a bit more manageable, with change of medication. Weakness and walking improve. I get my first infection and am rushed to the Emergency Room. The infection sets my recovery back to the one month stage.

Month three – I can now walk the dogs by myself. I am stronger and have less fatigue, but by now I have learned that when I’m fatigued I need to sleep. My wife and I actually start to go on dates again!! Matinee Movies, dinners out, and the other things that normal couples should be doing. Pain, fatigue, and spasticity are still present but I am learning to manage them better. I did get another infection. This time it was caught early and so far things have been ok. Extra sleep and another antibiotic to fight through the bug. At the end of month three I will be starting physical therapy. To get ready I have been doing some stretching and body weight exercises. One day of exercising a bit too much put me in bed for this last week. Fatigue, pain and spasticity were back. Rachel needs to help me stretch my legs as I can’t straighten them myself. WOW, it hurts. She has brought tears to my eyes more than once. Not because she is being aggressive, but because my muscles are that rigid.

To sum up a lot of things, I am glad I decided to take six months away from work. I am not mentally or physically ready yet. My boss is supportive of the decision. By having this time, I concentrate on me. Usually that means a lot of sleep every day. Most days I sleep more than 12 hours. But I really have a better outlook on things because I took this me time. I am optimistic that the physical therapy will improve things faster. I am also hopeful that my IgG levels are normal and I won’t require infusions. But I won’t be upset if I need them, because I know they will help me to feel better.

Here is one odd ball thing that is happening: I can remember my dreams again and many of my dreams are in color. When this illness started, four years ago, I slowly lost this ability. I think this is pretty cool.

#HSCT #CIDP #medical #zebra #colorfuldreams

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