Transplant adventure continues
 

Hi All -

Woke up Monday with a little wheezing - then quickly serious trouble breathing - wheeled down for Cat Scan - uncontrollable shaking - good to be back in room - but still feeing terrible - Foley catheter (even worse than I'd imagined it'd be) moved down to ICU - infection, pneumonia, "think maybe you need a respirator... oK just this horrible machine that forces you to breath via a thing around your nose and mouth, drifting in and out.... liver and kidney numbers very bad - maybe from infection, chemo or both....have know idea what drugs I'm getting - can't - though I could deal with anything but feeling unsure who much worse it could get... by end of day could breath without mask, just an uncomfortable thing forcing air up my nose. Next morning needed less air, let me out of bed - could hardly stand (how can this be, I'm a bad ass, never need help I can do it myself...except for now. Next day.. bacteria gone, liver and kidney numbers all pretty good, feel good.. can walk, eat, tubes and wires gone - watching them wheel the box out of the ICU very sobering.. back to transplant unit - like coming home - everyone so kind and happy to see me... phew.

Very scary couple of days but glad to be feeling better and to get out of the ICU on Yom Kippur feels very good. Glad to still be alive.

Back to engrafting Day Zero Plus thirteen....

Best to everyone
P

Paul,
As they say in French " bon courage". Sounds like you're a fighter and still have a lot to live for so keep fighting the fight. Prayers and good vibes your way.
As a caregiver, am in awe of the strength and resilience of MDS patients. It's a horrible disease.....

Annette ( with a 78 year old mother with high risk MDS with no chance of beating this.....Vidaza keeping AML at bay so far.... 16 months....)

Paul,

Every transplant patient has good days and bad days, ups and downs. But you had a remarkably "down" couple of days. You probably gave a good scare to everyone around you.

Even though you needed help just to stand up (we men have to protect our egos, after all :)), your tough spirit gets some of the credit for your beating a setback like this.

I hope things go a lot more smoothly from here on.

Omigosh Paul! I am so sorry to hear about your bad couple of days there. That must have been scary. Glad to hear you are feeling better now and that the liver and liver numbers are better. You are a bad ass - I am sure that is why you were able to kick that infection pneumonia to the curb! Hopefully it will be smoother sailing from now on. Sending prayers and positive thoughts your way!

Back from the brink, by the sounds of it Paul. Well done! You remind me of Bailie with your fighting spirit. Continuing to pray for you too.

Great job Paul! I have been fighting off some infections for the past few weeks that had very similar, scary, quick courses, but have hit recovery each time. When you know that you are going to win, the fight moves into your favor tremendously.

My case - a few weeks ago I contracted pneumonia - within a couple of days went from perfectly good lung function to over 80% infected with pneumonia, could not walk 30 feet without oxygen - and with oxygen was down to 60% pulse ox - fell asleep as soon as I got back to the bed. Two days later - no oxygen, walked about a mile with no stopping. Lungs continue to improve and strength better by the day.

Fight on - don't let doubts creep in, bumps in the road, not roadblocks.

Glad to hear you are recovering well.
Dan

So sorry to hear about your pneumonia Dan. Glad you are getting better each day.

Hi and thanks everyone for their kind thoughts, encouragement and advice.

Dan - sorry to hear about your pnenmonia - Glad (but not surprised) you seem to be handling it and getting better - you are seriously bad ass. I also appreciate your advice - liked the bumps in the road comment. I'm am staying positive and looking forward to long showers.

This is an interesting journey and I'm grateful for being able to vent to this forum. Best wishes to all - Paul

Paul, I am glad that you are handling this well. How is your taste and appetite doing? About your stage my sense of smell greatly increased, while my appetite and taste declined.

Hi Bailie - I haven't noticed any changes in my sense of smell but food does seem to taste slightly different - nothing dramatic. My appetite disappeared a few days before and after the "incident" - but now seems to have returned and I'm eating pretty heartily. I've been fortunate to have avoided mouth sores - at least so far- but if I haven't gotten them by now I should be OK - or so they say. I think I'm starting to lose my hair - I was hoping to dodge that one too.

You daughter sent me a lovely private message - seems like a great person - it was really nice to hear from her and she was very supportive and kind. Nice work!

Otherwise feeling good - waiting to engraft. Best
Paul

So glad to see you are doing so good.
What was your ferritin level before BMT?
Mine was 3500+. And just got the news that exjade was denied.

Best wishes to you!

Hi Hope - my ferritin was around 2200-2500 as I recall. It took about a week to get approved for Jadenu - an improved, less toxic version of Exjade. They approved Exjade initially, but not Jadenu. I'd talk to your doctor and ask for Jadenu instead and fight to get that approved - there is an appeals process. You may need a more informed doctor to make the argument on your behalf. My doctor also said Novartis had a program to help pay/provide for the drug if your insurance won't. Look at the Norartis website or ask your doctor (or both). If you have found a more specialized doctor at Emory or elsewhere that person would probably be most informed - good reason for finding one now if you haven't already. It takes a while for the drug to work, but if your waiting around for a month or so I think it'd be good to get your iron down as much as possible. Iron overload can also be contributing to some of your heart problems and lowering iron is associated with better transplant outcomes. Good luck - and thanks for your good thoughts.
Paul

That is good news Paul. You seem to be bouncing back very well. I didn't have mouth sores either, so I hope that continues for you. As you are experiencing this "trip" seems to take a different route for each person. I salute you that you are handling the food situation well. It was difficult for me. Water tasted badly and they kept harping (and I knew it was important) on drinking the 2 liters each day. It was really difficult for me. The food lost all of its taste at about Day+5 and I didn't regain the taste until about Day+40. It was a gradual comeback. So many little things that added up to big things while going through the process. I am amazed (and appreciate) at your ability to respond to the forum. I did not have that ability for 20-30 days.

Yes, daughters are great, especially when they can be a caregiver!!

I continue to wish you the very best, you are doing great!!

Paul, thank you. The insurance company denied exjade said it is because my MDS is high risk, so I am not allowed to take that.
Local hematologist is trying to appeal. Do you think this will eventually get approved or I should ask dr to get Jadenu? Maybe even harder because it is new and I suppose more expensive?
Sorry to hijack your post.
Best wishes to you every day!

Hi Hope - If you are going to do an iron chelator Jadenu seems like a better version - so I'd talk to your doctor about trying that instead of Exjade. The drug is listed as a contraindicated for High Risk MDS, although I'm not sure why. I was originally diagnosed with Low Risk but as things progressed my transplant doctor described me as being High Risk - this surprised me and I asked my hematologistand we settled on "kinda risky MDS" - so I'm not really sure the basis for the contraindication. Lower iron is definitely better for transplant and also better for you heart, but they did not want to delay my transplant for iron chelation. You might also try contacting someone at Novartis. Some of the listed side effects are quite scary but I didn't have a problem with it - I only took it for three or four weeks. My doctors seemed somewhat ambivalent about it. Good luck
Paul

Hi Paul - How are you feeling?

Paul, thank you very much! I will ask my doctor.
you seem in good sprit.
Every thing will be smooth for you.

God bless you.
Hope

Hi All - Day 15 - platelets at 4, WBC at .1 - waiting to engraft.

Otherwise feeling great - the infection is gone, liver and kidney function doing well, energy good (prednisone?) - no mouth sores, no nausea or vomiting, appetite good, eating well. Big swollen legs, but getting better - and the Mets are going to the playoffs - very happy to be alive! Thanks for everyone's good thoughts and prayers
Paul

Yay! Sounds like things are going well. Saying prayers for engrafting to start. Good to hear from you.:)

Paul, it was Day+16,17 and 18 when my numbers took a big jump.

Congratulations! Keep us updated on your good news!

Hi Bailie - hopefully you called it - my WBC crept up to .2 this morning - a good change from less than .1 - everyone seems excited.

Thanks to everyone for your continued prayers and good thoughts. Still doing the engraftment dance and otherwise feeling good - very blessed to be alive.

Paul