update - day 27
 

Hi all - its been about two weeks since my trip to the ICU - since then my WBC's have risen high enough so I can leave my isolation room and walk the halls. Yesterday walked five miles and felt really good - better than I have in years.

We've been waiting for my platelets to rise - they'd been around 2-4. Yesterday they finally rose to 11 which was very exciting - unfortunately they're back down to 6 today. Neutrophils were also marginal today - but high enough for me to keep walking. Nevertheless, everyone was a bit disappointed

All in all however, I am finding this experience to be a blessing - helping me appreciate friends family and the many people, including those on this forum who continue to advise, wish me well and pray for me.

My donor gave bone marrow with a relatively low stem cell count and I'm told the counts are expected to rise more slowly - I figure another test of faith for me.

Other than my counts I feel really good - mentally, spiritually and physically.

Hopefully my numbers will continue improving and I'll be onto the next step of this journey.

Tracy: how are you doing?

Paul

Paul,

Congratulations on being sprung from jail. My wife actually felt a little nervous when she was first let out of her isolation room, after being cocooned for 3 weeks, but it's an important sign of success.

Those laps around the hall can give you both a mental and physical boost, even though the scenery gets to be a bit boring after the 10th time around.

During the whole course of this disease, we're advised to note our blood counts but not hang all of our hopes on a single CBC test. I guess the same goes for the critical weeks post-transplant, but it's hard not to cheer or feel disappointment at the direction they seem to be going day by day. Platelets come around in time, but it's the neutrophils I'd watch most closely.

Keep up the great work!

Hi Paul,
I was waiting for an update! Glad to hear you are feeling better. So great that you are able to get out of your room again. Hopefully those counts will start climbing higher soon. Sending prayers your way.

I am doing okay. They took me off the IV antibiotic, but I am still on the IV antifungal. They said the CT scan from last week looks better, but there are still nodules in my lungs which means the fungal infection could still be there. The infectious disease specialist was going to talk to the one at City of Hope to see what they want to do about the 2 anti fungals I am on as my liver counts are climbing pretty high. I have a feeling they are going to want to a lung biopsy again.

That's great Paul!! I would caution you to be patient and not "over do", but you seem fine. It amazes me that you can walk that far. Your RBCs must be at a reasonable level. Keep up the good work.

Also so happy to hear from you. Like everyone else, I was watching closely to see your name pop up. Will keep sending positive vibes and prayers your way. You're an inspiration to many......

Was starting to get concerned after not hearing from you for a while, Paul, but now this wonderful news makes the wait worth while. Well done!

Hi Everyone - thanks again for the kind words and advice.

Bailie - definitely overdid it a bit, legs are pretty sore this morning but a good kind of sore - I haven't been able to exercise that much in the last couple of years and it feels great being able to do so - my goal is to get really fit as I continue to recover.

They are keeping my hemoglobin above 8 via transplants, so I'm still quite dependent on blood, but hopefully that will improve. My Hg has been ranging between 5 and 8 prior to transplant, so I think having consistently higher RBC's helps - but I also give a lot of credit to the people praying for me and for my improved attitude, faith and gratitude. I especially thank everyone on this forum for their prayers and good thoughts -

Its a little frustrating the numbers aren't going higher faster - but that is where keeping my faith gets both harder and more important.

Tracey - sorry to hear about you delays - stay strong!

Waiting for this morning's numbers - i'll let you know how it goes. Thanks again to everyone.

Paul

Paul,

Great update! Slow and steady is ok. My neutrophil engraftment was very slow, but got me there eventually. Your attitude and fortitude are powerful allies and will carry you through the next several weeks and months as needed.

Five miles of walking in any given day is quite a feat. Walk, move, exercise as much as you can without getting run down. As others noted, movement clears the mind, keeps the body healthy, clears the kidneys of toxins, etc. Your journey is inspiring

Going Home - Day 30
 

Hi Everyone - they were planning to wait until my platelets were 10,000 or higher for two consecutive days to send me home. Yesterday they were 10,000 and today 9,000 and they decided to give me a platelet transfusion and send me home anyway. I go back to clinic tomorrow to check blood see how its going. Meanwhile my RBC's rose over 8 on their own and my neutrophils have been holding steady around 1.6 on there own- all good news. So far no serious side effects other than bruising from the low platelets.

I definitely overdid it a bit by walking 5 miles - but it felt great to be able to exercise - I haven't been able to walk that far in over a year without feeling terrible. Now I'm feeling better - like Im finally on an upswing.

Thanks to everyone for their prayers, kind words and advice - all have been very helpful. I'll keep you posted on the next phase of my journey - but again, everyone on this forum have provided me with hope, inspiration and support.

Best to everyone
Paul

Great news Paul
 

It is great that you get to go home. I remember how good it felt to be home around my own things. I could walk from room to room and get my own food and sleep in my own bed. You will be in my thoughts and Prayers.

Yay! Glad to hear you are going home! That's great that you feel finally on a upswing too. Please keep us updated. Sending prayers that your numbers keep rising and you keep feeling good.

How are you doing Paul?
 

Just wondering how you are feeling and how things are going for you at home. Hope you are still improving every day and have been able to keep up that 5 mile walking!

Day 40
 

Hi Tracy - nice to hear from you. I'm doing OK - I'm adjusting to post hospital life - staying in apartment near hospital, feeling a little shut in but mostly glad to be in a normal bed.

My blood counts have been mostly stable - I go back to the hospital every other day and have been needing RBC transfusions every time - today was the first I didn't. I haven't needed platelets, although they've been giving me neupogen each time as well - except for today - Today was good -- perhaps I'm starting to climb back to normal. Had a bone marrow transplant had fewer stem cells than they'd have liked so that is possibly why things are taking a while.

The preliminary bone marrow biopsy results from last week were good - no blasts or sign of dysplastic cells - while not too many cells - those that were there all looked healthy. We're waiting to find out the percentage of donor cells and hoping for 100 %

Feeling pretty good although somewhat tired. Haven't found a walking routine yet - not much of a city walker, especially in mask and gloves - but trying to figure out a consistent workout. Had planned to walk up and down the stairs, but I'm pretty winded after 11 flights.

How are you doing? Any news about the pneumonia? Are they thinking of a lung biopsy? Any schedule for your transplant? I'm looking forward to you regaining your health. This experience so far has been filled with highs and lows but the idea of feeling good again is very exciting -- and I'm excited for you to get there too.

You are in my prayers and thoughts. Paul

Hi Paul - Glad things are still going well for you. I think I may have to go the apt or hotel route near the hospital when that time comes at least for awhile. How long will you stay there? 11 flights?! That would make anyone tired!:)

Nothing new here. They will probably do another CT scan in a couple of weeks to check on the lung nodules. No date for the transplant yet.

Thanks for the update! Praying for you to continue your progress and glad to hear that there haven't been any setbacks for you post hospital.

Hi Tracey - thanks again for your prayers - you are in mine as well.

I'm not sure how long I'll have to be here - depends, in part how far you'd otherwise be from the hospital. At this point I'm going back at least three days a week - sometimes more. Its taking longer for my low dose of stem cells to get going. I think it varies for everyone - but I suspect I'll be here for day 100. My doctor may let me go for the weekend.

Someone I know who had a transplant went right home, probably against medical advice - but he was only 45 minutes from the hospital - I am a about 2 hours away. How far are you from the hospital?

All that said, I'd ask your doctor - also some (maybe most) transplant centers offer some kind of low cost or free lodging near the hospital.

Good luck - let me know if anything changes.

Paul

Thanks Paul. I hope you get to go home soon. We live a little over an hour away, but it's all freeway - so if they are doing construction or a there is a wreck, it can take 2 hours. The joys of living in California! I know my husband isn't going to want to drive me there every other day for weeks, but I have some friends who might be able to willing to drive once a week for awhile. I will definitely ask about it. I know they have some kind of housing on site. Thanks for the prayers!

My wife stayed in the City of Hope on-campus housing for the week leading up to her transplant. That's when she had her radiation treatments.

Hi Neil,
Did they charge for those?

Tracey,

It's part of the transplant medical care, so her same insurance covered it.

The "cottage" is like a studio apartment. We both stayed there. I took care of her medicine schedule and woke her up when it was nearing time to go to the radiation room, by shuttle golf cart.

There's a little kitchen, and I brought easy-to-prepare food and fed myself. She was unable to eat (the radiation made her too nauseous) but some patients eat just fine.

We were there Tuesday thru Friday during radiation and Saturday and Sunday for resting. Then she moved to an inpatient room for chemo and the transplant.

The system could easily have changed, since that was in 1998, but the cottages are still there and they look the same on the outside!

Hi Paul - how are you doing?

Tracey