Saturday, 29 June 2013


Neupogen shot number 4 was efficiently administered by Vineetha as usual.

But today I noticed that there was a small patch of blood at the injection site. As well as that, the hospital had warned me that I would be neutropenic by the end of the week, so I now need to be extra careful to avoid infection.

The advice from the hospital was to attend the Emergency Room if I had a fall or had a high temperature. However, I was warned that the Emergency Room doctors should not carry out any tests on me without first talking to the Transplant Unit. Apparently they have a tendency of carrying out every test under the sun, and I could possibly end up with a million-dollar hospital bill. That is something I am very keen to avoid.

Tomorrow will be a rest day, and then we will be on the Day of Harvest. I need a collection of 2 million stem cells. A fellow CIDP patient had his harvest on Thursday and reached a count of 17.89 million stem cells, so I am quite looking forward to seeing if I can reach that target.

  • Seen by 47
  • SA hope you get lots and lots of lovely healthy stem cells.... that allow you to be all shiny and new!!! don't go falling down anywhere...just be waited on hand and foot...(sorry VR)
    1 July at 17:48
  • VR Lol... Been doing that for years..
    1 July at 18:09
  • SA I know....but just a little bit longer.... after all this is done and is a success (God Willing)...your hubby's gonna dicover a new talent 'do everything for yourself' am sure he appreciates everything you do...he's a lucky dude xxx
    2 July at 05:44

Saturday, 22 June 2013

Mobilization chemo [The Day After]

After having been up most of the night visiting the bathroom, I was feeling pretty shattered. Although I was not nauseous, I did not feel like a big breakfast so ended up having buttered toast, a blueberry muffin and a cup of coffee.

My dear wife had a terrible night worrying about me in the hospital, and arrived there at 7:30am.

Glynn was back on duty at 8am, and took my vital signs again, which were normal. She returned to the room around mid-morning to instruct us how to inject the Neupogen, and was mildly embarrassed when she remembered that Vineetha was a dentist and regularly injects people. 

For the rest of the morning, I was drifting in and out of sleep and by 12pm I was discharged and we returned to the apartment.

I had a light lunch and then slept all the way through to 8pm

The first step in my journey was complete, and without complication!!

  • Seen by 47
  • PN Cool!
    23 June at 18:17
  • DB Well done on taking your first step on a big journey. Stay positive always - the mind is the strongest thing we have .
    24 June at 00:30
  • WM Baby steps the way to go xx
    24 June at 21:05

Friday, 21 June 2013

Mobilization chemo

Today was my admission mobilization chemotherapy.

The Science Bit
From next week I will start the Neupogen injections which will stimulate stem cell production. My white blood cell count could also rise which would worsen the current symptoms as my body comes under attack from the immune system. Chemotherapy at this stage suppresses the immune system in preparation for the harvest of stem cells on 1 July.

I was a little apprehensive about the next step of my journey, and woke up as soon as the sun peered over Lake Michigan.

We left the apartment at 7am, and strode off towards the hospital arriving there about 20 minutes later. The instructions told us to report at the information desk on the second floor of the Feinberg Pavilion.

I was sent by wheelchair from the Feinberg Pavilion over to Prentice Women's Hospital (Dr Burt has his SCT unit there; I have not had a gender change!)

On arrival, I was taken to room 1571, and introduced to Glynn (the nurse who would be looking after me for the next 24 hours). She gave me an overview of what would be happening and told me that Amy Morgan would be coming in to explain things in more detail.

Amy went through my medical history, and took the list of medications to ensure that they would not interact with the chemotherapy. She also advised what I would be going through over the next week, telling me what precautions I should take and who I should contact if I had any concerns.

Then we met with Dr Burt. He walked into the room with a big smile on his face and shook my hand. This simple gesture was so reassuring for me!

His first words to me were, "Despite the nerve thickening, I think we will see improvement in your condition. We don't know what effect it will have on the nerve thickening, but it should improve the other symptoms."

We discussed my other concerns, and then he continued on his way.

This morning had started well. Today was going to be a good day!!

Glynn returned to the room, found a large vein in my right arm and put in an IV point. There was a sharp scratch, but nothing too painful.

She then started a saline drip to hydrate me, and shortly after started the Mesna drip (which would protect my bladder from the chemo therapy).

After taking a blood sample, and testing the platelet count, the pharmacy authorised the issue of the chemotherapy (Cyclophosphamide), which started at 2pm.

Two hours later, the chemo was over but the saline and Mesna would continue until 11am on Saturday.

The fatigue hit me like a wall within an hour of the chemo drip starting, and I was drifting in and out of sleep over the next few hours.

By about 8pm I was feeling mildly nauseous, but a little tablet took care of that for me, and I was able to enjoy a cheeseburger and salad for dinner.

They start me on Lasix tablets after dinner, which meant that I was having to visit the bathroom fairly frequently throughout the night order to empty the fluid from my bladder.

Thursday, 20 June 2013

Positive Thinking

Thursdays seem to be a day of reflection for me.

After having slept through last night, I woke up and pondered on what Dr Burt had told me on Wednesday.

If the worst outcome was that the SCT would stop the progression of the illness, then that was a good thing!

In any case, he said it was uncharted territory for him and there was every possibility that I could demonstrate the recovery shown in other CIDP patients.

I'm a great believer in positive thinking, and I said to myself that now was the time to think positive.

Nush reinforced this thought by telling me, "Daddy, you always think positive so be positive!!

There!!  I have been well told....

  • Seen by 49
  • RV Nush rocks.
    23 June at 14:52
  • SA Nush is the of all is the fact that she is right....with what you have had to endure over the past years, wow, someone else in your shoes would have given up a long time ago...but you have remained so positive, and full of inner strength (so what if the outside of you hasn't been as strong), your inner strength and positivity and zest for life, have helped you get to where you are today....your wife has been your pillar, and your kids your laughter, your friends your encouragement...but if you weren't yourself positive, nothing else and no one else would have all in all Nush indeed does rock. xxxx
    23 June at 16:30
  • BTR You're right, Nush does rock! But I'm helped by great family and friends, and as you so rightly say, 'my pillar', Vineetha!!
    23 June at 16:34
  • JPH All four you are a great inspiration. You all rock!
    24 June at 03:29
  • KJ Right Mon , Nushie.... Is absolutely correct ..... Pray & believe ...... GOD will do the rest ..... 

    I know how great Vineetha is ??? Great job mol ... All our regards ...
    24 June at 19:04

Wednesday, 19 June 2013

Evaluation [Day 4]

Then came Wednesday!

Our meeting with Dr Allen was scheduled for mid-day. He spent about an hour discussing my symptoms and taking my account of my medical history so that he had a good understanding of the current status of the illness. 

After knowing about the potential misdiagnosis of CIDP, everyone was concerned and wanted every bit of information thrown into the pot for consideration.

He left the room since he wanted to re-check my medical notes, and told us he would be back in 15 minutes. 

The minutes ticked by, and Dr Allen was nowhere to be seen.

He returned about an hour later, sat down and said “It's CIDP." 

It was a difficult diagnosis due to the nerve thickening, but other possible disorders were discarded by a process of elimination .

We have never been so happy for a diagnosis of CIDP!

Now came the discussion with Dr Burt later this evening ..........

By 7pm I hadn't heard from Dr Burt so I decided to call him. He said that Dr Allen had confirmed the diagnosis of CIDP, but despite this he was still really concerned about the nerve thickening. Dr Burt kept reiterating that he had never ever seen such thickened nerves in a patient with CIDP.

But he was happy to go along with the diagnosis given by Dr Allen.

He told me that I should not expect anything more than a stop in the progression of the disease, since the thickened nerves threw him into uncharted territory. He also told me that if the nerve thickening continued, the nerves in my spinal cord would be strangulated which would cause further issues for me.

So on that basis, given that there were so few options left for me now, he would accept me on the trial.

It was a great relief to get the acceptance, but there was obvious disappointment at being told that any recovery would be limited.

But every cloud has a silver lining, and the one for me was that my illness did not have genetic causes, and my girls were safe!!

Tuesday, 18 June 2013

Evaluation [Day 3]

We had our meeting arranged at 1pm for the EMG and nerve conduction tests. I arrived punctually and was led away to the test area by Dr Buchanan.

She hooked me up to the machines as in previous tests I have had carried out in the UK, and started the process of electrocuting me to obtain some test results. She was very kind and kept apologising every time I flinched with pain.

But after 45 minutes of this, she didn't seem to be getting the results she wanted and disappeared to call Dr Allen. 

Dr Allen came into the room, briefly introduced himself and started zapping me with electric currents way above intensity that Dr Buchanan had used. 

No apologies here, as he just needed the results to confirm diagnosis. And time was running out!

After an hour of this, he said “Okay, we'll meet tomorrow”.

Then followed another night of anxiety, waiting for his diagnosis and then Dr Burt’s opinion on this.

  • Seen by 47
  • RV Ben, you should write a thriller for a magazine - these chapter by chapter inputs are quite gripping.! 

    23 June at 13:21
  • BTR 
    23 June at 13:29

Thursday, 13 June 2013

Confirming diagnosis

We were all feeling a bit down yesterday evening after the meeting with Dr Burt.

But having slept on the idea, I realised that various tests had been done during the initial diagnosis of my illness which should confirm that the illness did not have genetic causes.

Unfortunately, I did not have copies of the test results and trying to obtain copies of my medical notes from the UK was proving very problematic.

But the game is not over until the fat lady sings, and I remembered copies of my notes had been sent to the Ayurvedic hospital in India that I had visited in 2007.

A quick call to my father-in-law in Kerala, and he was able to request copies to be emailed.

I received these within the hour, and promptly forwarded these on to Dr Burt.

I now have to wait for him to look at the paperwork I have sent, and hopefully I can convince him of the diagnosis.

Job done?

Let's wait and see

  • Seen by 48
  • DR What an industrious family. Well we always knew that! 
    13 June at 17:44
  • WM Fingers x Ben x
    13 June at 23:10
  • RV Ben, remember Allen is the key. Dr. Burt will go only by his recommendation. and my guess is that if 3 neurologists have confirmed it is CIDP, Dr. Allen will also come to the same conclusion. in the meanwhile try Giordano's deep pan pizza and breakfast at eggsperience also the cheesecake factory in John Hancock.
    14 June at 04:14
  • DR I concur with Ramgopal! In particular the Cheesecake Factory. Think of it as "reverse" liposuction. 
    14 June at 12:45
  • RV Hear hear
    14 June at 12:48
  • SA I'm thinking we need to take a trip to Chicago (If only and I wish!!!) to enjoy some of the wonderful memories you are creating with your wife and girls...aside from the hospital/doctor stuff....enjoy the sights/sounds/and food of course of Chicago.... God Bless!!! 
    14 June at 14:55