The Journey has Begun

Gwen and I left for Chicago on Tuesday to begin her Journey. After a long plane ride and way to much walking for her we made it to our apartment about 600PM. We ate and then we slept until the next morning.

Wednesday we went to the Northwestern Medical Center for the first time. It is such a big place and so many people. Gwen and I were in awe to be honest.

Gwen’s first appointment was for lab work. The ended up collecting 21 vile’s of blood for 30 different tests. She was a bit loopy after that but she did great.

After that we went and had a bit of lunch together and we prepared to go meet Doctor Burt. We got to his office and we waited. Gwen was exhausted and we were both nervous.

We sat there for a bit and then the door opened. He is a tall man in in his late 40’s and wore cowboy boots. He was somewhat overly focused on the symptoms and less on the person but we continued. He asked the same questions that Gwen has been asked over 100 times. She answered the best she could but had a hard time due to being so tired, nervous and hurting like hell. He was hard to read but towards the end he asks, “So you want to do this? You know the risks involved, right? You can die from this and we will make you very sick as we reset your immune system.” Gwen looks at him and almost as soon as he closes his sentence she says, “Yes! I want my life back. What else can I do? Nothing!”

He looks at her and says okay and then goes through the rest of the week with her and tells her the process.

We leave and go back to the apartment for the night. We go by the grocery store because it gets really expensive eating out all of the time. I happen to get me a bottle of Whiskey which helps when I write.

We go back and end up ordering Chinese food for dinner and then we go to sleep and get ready for the next day. During this time I went up to the top of the building we are in and took a video for Gwen because she can not walk to the top of the building. I will show her what she can not see anytime I can.

On Thursday Gwen has two appointments. One is to get ANOTHER EMG for nerve response and conductivity. The man giving the test I swear I have dreamed him before. I watch him for body language and the first thing I see is him doing is shaking his head and saying, “Yes, we definitely have a problem, its is CIDP!” He continues the test and I continue to watch him as he shakes his head as to acknowledge his thoughts and confirmations of Gwen.

After this initial torture, Doctor Allen comes in and smiles and introduces himself. Him I can read. He smiles at Gwen and asks if he can confirm some of the results and then proceeds to repeat the tests she just endured. He goes a step further and places a needle about three inches long in different parts of her body to see how her nerves conduct, which is very little. I see him grimace when she grimaces and I see him do the same head nodding when he confirms a thought or result.

I see Gwen cry from the pain and it hurts my heart for I would gladly lay in her spot if I could but I cannot. After about 45 minutes of electrocution it is over and he says that he will be meting with us tomorrow to go into the results and findings and his opinion.

We get ready and then we head to our next appointment with the Neuro-Ophthalmologist for her vision in relation to CIDP.

Gwen sits in the exam chair and the doctors start performing their tests and asking the questions that she has been asked 100’s of times before. After the lengthy vision tests the doctor says that it is hard for him to say if her vision problems is related to CIDP or not. He says it is rare and hard to diagnose. We kind of already knew his response but he does not agree with Gwen’s Neuro-Ophthalmologist in Houston.

After all of this we head back to the apartment for the night and go over what was done today. We spend some time together, talk to the kids and relax in preparation for her MRI’s the next day and our visit with the Neurologist that will either confirm or deny her diagnosis of CIDP. We realize that this being a clinical study the standards for confirming her having CIDP are much higher and could keep her from getting into the program.

The next morning we get up pretty early because we have to be up at the hospital by 830 for her MRI’s. We pack up and get ready to leave so we can come back and get our luggage between her MRI and the appointment with Doctor Allen.

We get to her appointment and I have to run pick up some paperwork for her and tell her I will be back there shortly. The guy taking her back says I can go back with her when I return. Of course when I return she is getting on the table and I am not allowed back. This is the first time I am not allowed to be with her and I do not like it at all. I can not protect her when I cant see her.

I sit and just think and take a ton of pictures while I wait. She finally walks out after a few hours and we both smile as I jump up to walk with her. We head back to the apartment and grab our luggage and check out. We hop in a taxi and head back to the hospital but we decide to get a bite to eat for lunch first. On the way back Gwen sees what she thinks is a souvenir store and decides that see wants to go back to get something for the kids.

We eat our lunch and make each other laugh, partially because we are nervous about her next appointment. We grab our luggage and Gwen decides she wants to walk the two city blocks to the store. Mind you, we are way out of place. We don’t have any jackets because we did not expect it to be cold like it is and we are dragging our luggage behind us. We walk like this all the way to where she thought she saw the store. We get there and guess what? Its a grocery store. We just walked two city blocks with the cold dragging our luggage behind us and Gwen walking with her cane.

All I can do is laugh and tell her that maybe we should ask around for the nearest homeless shelter from the way we look. She about falls over from laughing. We get back to the block we need to be on and as we cross the street a Chicago Traffic Officer walks us across the street and say’s “Where are your coats?” All we can do is say that we are not from here and we all laugh.

We head up and we wait after our little adventure.

We get into the room and Doctor Allen comes in and it begins. He goes through the tests she has been through the last few days and her paper work from Houston. He asks Gwen the typical questions and then performs a few tests. One of them I hate more than anything. He asks her to sit in the chair and to cross her arms and to stand with out using them. She cant and I can see the pain and the frustration in her face each time she tries. I would do anything to give her life back to her.

He finishes up the exam and then he beings by saying that for him to confirm the diagnosis of CIDP her results have to exceed the norm. We get nervous with this wording. He continues to say that from what he can see there is something else going on but not sure what it is. She may have something else along with the CIDP or this may be something totally new. He says that from the findings and from the MRI she just had she meets the requirements for the study and that he is confirming her diagnosis of CIDP and he will not say no and will recommend her for the transplant.

He gives us one stipulation though because of the odd findings. We now have to get a Genetic Study done to be sure that there is nothing genetically wrong with a few other tests. If they all come back negative she is in. He does not feel anything will come back but wants to be safe. We hope that they come back negative for if not there is nothing that can be done except to treat symptoms as they progress.

We feel good about the outcome but now are nervous about the tests. Gwen has been confirmed and all we need is the good news from these tests and then we can begin the transplant.

All in all it was a good trip and we got what we went to Chicago for and now have hope and a path to travel. We will travel this path together and I will be with her by her side always. I will do what I can for her.

This is her journey and I am traveling it with her. I will carry her when she cant walk and I will light any dark path in front of her.

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One Response to The Journey has Begun

  1. pat says:

    Thank you for the great recap! For those of us contemplating the same journey, such writings are quite valuable. I wish you well as you tackle this dreaded nightmare of disease and will pray that you overcome it.

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