Back to Hope Lodge

I was discharged at 4.15 this afternoon and am back at HL. Friends on the 12th floor had been in touch with Kristy via text and I was given dinner when I arrived and extra supplies of water. These people are all very special and so giving, I'm very lucky to be part of the 12th floor 'family'.

I'm feeling pretty tired although have been fever free since this morning. My Creatinine is 1.4 which is great. My wbc was 1.5 and my anc 1.1 so before I left today I had a neupogen shot to boost those numbers. Other numbers are low but not too bad.

I still have that headache, I think it could have been the bed/pillow which were pretty uncomfortable, so hopefully it is gone in the morning.

Looking forward to seeing Kristy tomorrow.

November 28th So far so good...

I started the day with a fever of 100.4f which is a little bit better than the previous morning. My Creatinine at 7.30am was 1.5 which I was pretty happy with. However it can still go up so I've had IV fluids all day plus pushed fluids orally just in case it helps. My weight went up 4lbs since yesterday! That's how much I've been hydrating. They will check my Creatinine again in the morning and that should show any trend. Also tomorrow they will test for Adenovirus and by Friday we should have a result.
All going well I'll be discharged tomorrow and I'll go back to Hope Lodge. Next Tuesday Dr Koehne plans to give me some more Cydofovir so I guess I'll be admitted for that again.
As Bernie my last 'planned' carer flew home today and I'm really not strong enough to be on my own Kristy will fly to New York on Friday to be my 'super carer', which I am very happy about.
So if I can just get rid of this headache...

November 27th

Well they just started the Cydofovir and I managed to get my Creatinine down to 1.4 this morning so hopefully that is good enough. I'll also be getting more IV hydration for a couple of hours after. Plus, at about 8pm I get a 4 hour infusion of IVIG. I think I'm going to be here for 3 days or so, I guess we wait and see how my Kidneys do and if they tolerate the medication I'll get it again in a week.
I must say this is a disappointment, we'll see how big a one in a few days.

November 26th Day +82

Well I guess I picked up a bug...Adenovirus. They found it in my blood at 116,000 copies per micro liters, I'm told that is high. My only symptom seems to be a high fever, as documented. I ended up going to Urgent care again Friday morning at 2am and having more tests (when the only positive one had been done on Wednesday - but either the result wasn't back or it wasn't picked up).
So now an infectious disease doctor is consulting with Dr Koehne to decide on a way forward.
One of the standard drugs they could use is Cidofovir, the only problem is that it is toxic to kidneys and normally not given to patients with an elevated creatinine...mine was 2.2 at last check. So there is a clinical trial that maybe available....I am waiting to see if I qualify. Another option is to see if my body can fight the virus off, I'll have to check with my doctor to see how intelligent that would be.
So we'll see...
Update: I'm being admitted tonight (Monday night) and start Cydofovir (I think that's the correct spelling) tomorrow, the other options are not on the table anymore. Good news is though, through hyperhydration (me drinking lots) I managed to bring my creatinine down to 1.5 and I'll get IV fluids tonight to try to bring it down even more before they start Cydofovir.
So again, we wait and see...

Long Day...

Woke at 2.30am not feeling great, in fact I have felt nauseated for about 4 days now and was hoping it would pass. However this morning my temp. was 100.8f and so I had to go in and have blood cultures taken in case I had a virus of some kind. So CBC was fine - really good in fact, Wbc 4.4, Hgb 11.5 and Plts 107. Creatinine not too bad at 1.8 and my temp. had gone down to 100.1. So by 5.30am I was back at Hope Lodge.
We (Pauline and I) are back again sitting, it a 'sick' waiting room at MSK. I've had more lab work done for a wide variety of viruses and are now waiting to see Eva the NP, 3.40pm...
It is a busy day here in clinic, luckily they were able to squeeze me in for some IV fluids today rather than come back tomorrow. So we're here for another 2 hours. My nausea has not helped my weight which has dropped by 2.5lbs. Hopefully tomorrow when they get back the viral blood work we get some answers. Also something unusual.. I had a CBC done again this afternoon and the Wbc had dropped to 3.0 - in 9 hours! I wasn't aware it could change so fast. 

Day +70 Part 2

I had a clinic vist on Wednesday (Day +70) and managed to put on weight for the first time in quite a while. A massive 1.1lbs! My Blood pressure seems to be doing great at 107/74. All my counts were fine, Hgb 10.4, Platelets 107, my Wbc was a little low at 2.4. So next week they will check it and if it's below 1.9 they will give me a Neupogen shot to bump it up.
Generally I feel I have more energy, the trick is not to do too much and get worn out. Pauline and I try to walk for over an hour every day and I'm starting to do some weight bearing exercises.
All going well I have only 3 visits left to the clinic, Pauline has been here over a month and my friend Bernie will arrive on Thanksgiving and will be my last carer! After that I'll stay for a little while on my own at HL and I have already contacted a couple of 'Angel Network' organizations to help me get back home early in December. I have been in NYC almost 3 months and would like to think this stage of my treatment is drawing to a close and I'll be home soon and be well enough to enjoy and great Christmas!

Day +70

Well my apologies for not posting for a while. We had Kristy, Mary Lynn and the kids visit last weekend which was fantastic! It had been 11 and a half weeks since I'd been with them and so it was about time. My favourite times from the weekend were laying on the ground building Legos or laying in bed just chatting to Sophie. We did lots and I think they liked NYC, but like me were/will be glad to get home. Here is a taste of what we did..

Exploring Central Park!

Feeding the horses by the hotel.

Enjoying the playground.

NYC!

Snack in Central Park.