A Bumpy Road.

Hiya,
Well I did get admitted for my mobilization chemotherapy, the hospital is new and very very nice, the nurse gave me a guided tour of the room, I was shocked it sounded more like a hotel than a hospital room with a flat screen plasma tv with a keyboard and Internet access. When you are hungry you just call and receive room service. Craig wanted to stay the night to try out the facilities. The hospital is that popular there is a waiting list for the obs/gyn floor so people can deliver there baby's there. We were also impressed that our Dr's when they entered my room washed there hands and Disinfected there stethoscopes every time without prompting from infection control!!! The Chemo went well as it was a bigger dose than I have had before and had to have bladder irrigation!! which was a new experience but at least I didn`t have to struggle drinking as much water as previously. I had very minimal nausea and I was discharged back to the hotel the next day. The weekend went better than I was expecting.

On Monday the nurse came to flush my Picc and deliver supplies for its care. She skipped the training when she realised we were both Rn's. As the day progressed my arm started to feel tight, painful and my fingers to my left hand became discoloured. I wanted to leave it to the next morning and see what happened, I asked Craig what he thought Straight away he said lets call the Dr and pull it out . On speaking with the Dr he advised that we go to the ER to have the picc pulled and get a scan. So off we trotted to the ER immediately got triaged as high priority and was taken back into the ER. The Dr's decided to pull the picc and admit me and to have a scan in the morning.

Two hours after arriving in the ER I was in a hospital bed very efficient service. I was admitted to the old part of the hospital not where I was previously. Where's the plasma TV with Internet and room service , there goes our ideas of grandeur , the bed in the room had a air mattress with a noisy leaking pipe on it that was very noisy. Craig said your not going to get a great nights sleep on that thing, hence he wasn't so keen to stay the night here!! So the next day bright and early I was whisked down to the Vascular Lab where they diagnosed a DVT from my axilla into the subclavian. Oh great I thought now I'm going to be on blood thinners with a low platelet count from the chemo but not so, Dr Burt assured me, that this clot will just disperse without such need. So a small bump in the road, it's very humbling being the patient and not the nurse but I must say the care I have received thus far has been excellent.

So now I am back at the hotel with my own private nurse Craig who works for food, is now having to give me s/c neupogen shots. These are a breeze after all the IV pokes I've been used to. I have to do these for 7 days as they will increase the amount of stem cells I produce. With the shots I also receive oral antibiotics until Monday. This is when I go in for the Harvesting of the stem cells, which unfortunately means another line being put in but thankfully not another PICC . Not looking forward to that day!

It's getting a little nippy here so we are looking forward to returning to AZ for 2 weeks to get warm probably around the 4th November, can't wait to see the boys and sleep in our own bed. I have not lost my hair yet but will do over the next week, at least we will save on the hair care products.
Thanks for reading the blog, wishing everyone well,
Love Sharon and Craig.

Cleared for Launch!!!!

Hi everyone,
I got the clearance for the stem cell transplant all the tests are in and here we go! Well today I get admitted for overnight chemotherapy called mobilization which encourages stem cells from my bone marrow to enter my bloodstream for collection, at present I am awaiting for a bed to become available.
Well I finally have the picc line I was looking forward to getting as this would prevent the numerous peripheral IV pokes and make the IV chemo easier to tolerate, after two attempts it was somewhat concerning to find my intra vascular circulation is just as problematic as I have a stenosis to my Rt subclavian vein thus they could not thread a picc line through that side and had to place it in my left arm, Four hours later thankfully it was placed successfully. I am now finding out through these tests that scleroderma has been affecting my vascular system more than we realised. Most of my heart tests have checked out fine but upon meeting with the cardiologist, it became apparent that I had some ischemia in one test which is often seen with scleroderma but I have been assured by the cardiologist and Craig that there is nothing to worry about!!! It would be my luck after finally going in for stem cell treatment and end up getting a bypass instead. It has taken a few days to come to terms with this but I say to myself that this is the reason I am having this treatment, to restore my immune system and alter the course of the disease, We will get through this by staying positive, strong and not letting these findings worry us.
Craig and I ventured out from the "miracle mile" area as we were having Walmart withdrawal symptoms. Everything is so expensive here designer this and that, so we took a bus to the nearest Walmart. Which after an hours bus ride we found it to be in a decidedly dodgy area of Chicago, we felt like staying on the bus and heading back to the safer part of town. However we hid our jewelry tried to look less conspicuous which with Craig is very difficult to achieve but we persevered and survived and got our "Walmart Fix".
One thing about Chicago you can definitely get around it with a great public transport system. With all the walking we've been doing its great for my cardiovascular system so Craig's keeps telling me.
As we await for the phone call on my restored state of the art mobile with new sim card to say my rooms ready for my overnight stay. I think of the positive at least Craig gets a night off from my snoring!!
Anyway Love to all our Boys, Family, friends in the US & UK, All at DV Endo & all at Good Samaritan Kidney Center. Thanks for all your concerns and well wishes and helping out back home with mom and the lads.
Cheers Sharon and Craig. x x

A Bruising 1st Week

Hi everyone,
Well I have week 1 under my belt or should I say tourniquet and I must admit that being on the other side of the health care fence is certainly different. I am actually excited to be having a picc line placed due to so many IV pokes, of which some that were not so successful, the options are getting slimmer, even Count Dracula would suffer getting blood from me. I've had lots of tests to check out my heart MRI's , Angiograms, Stress Tests and I think at the moment there all checking out ok. We met with Dr Burt this week who assured me that the stem cell transplant would go ahead. Phew!! Definitely one less thing for us to worry about or should I say Craig to worry about.
This weekend will be pleasant as we have no hospital trips and my arms and hands can heal. What else has happened? Well I lost my phone and subsequently acquired it from the lost and found, here I was thinking yes there are still honest people in this world, alas when I switched my phone on they had taken the sim card out. I can hear my sister laughing at this, as my phone obviously was not worth keeping. If you need to get hold of us you can contact us through Craig's cell or our home phone.
Chicago has been kind so far to us as the weather hasn`t been too bad we have managed to be able to get around without frost bite and have even taken some strolls along the lake. The change of pace to our normal lives in Phoenix is becoming less of a struggle even Craig's found time to read a book. Need to get him to sit down longer with his visits to Starbucks and we will be well away.
The boys back home are doing fine, Mom is doing a grand job! We get to talk everyday via web cam so we can continue to nag them on hygiene and homework needs. We are missing them greatly but know that we get to see them in November for a short break before returning, which we are looking forward to. My Mom gets to go trick & treating with the boys which is a first for her she's threatening to go out in a witches hat and no teeth!! Craig says she dosn`t need a costume look out neighborhood!! Love Ya mom!!
Well better go we need to find a local Best Buy to get my high tech phone sorted.
Love to all. Sharon and Craig

Back by popular demand!!

Hi guys, I hate to go over the same old same old and would hate to bore you with the tedious details of tests, tests and more tests but I'm going to!!No, Just kidding! At least this time i know my endeavours will get an end result worthy of the cause, the stem cell transplant.
Well Chicago has been kind to us in climate terms, the weather is warm actually on Monday it was warmer than Phoenix but there is news of rain, looks like I've got to go out and buy a brolly!!!I know that's nothing new to you guys in the UK but we are used to them shielding us from the sun not rain! Craig's happy because he still gets to wear his shorts at least for the time being.
I see Dr Burt tomorrow so i hope the visit goes well. Fingers crossed.
Thank you to everyone who are supporting us in this, it means a lot to me that I am being nagged to write this blog because you care!
Cheers Sharon and Craig.