earlier than expected

[SkipM]

Dr.'s office called today and told me that I am being admitted to the Hospital of Unv of Pennsylvania on Friday Feb 19th to start getting ready for the transplant. Originally I thought we were looking at March or April.

Getting my head wrapped around everything because this is real now.

Trying to cram everything into 3 weeks. ie Taxes, College Visit, life.

I've been waiting a long time for this and am looking forward to starting this chapter. I know it will be hard but I have full confidence this is the cure.

Any advice is appreciated.

[Neil Cuadra]

Skip,

It's about time they cured you once and for all!

My wife and I had the same "yikes!" reaction to a transplant scheduled sooner than we expected. But we made all the preparations we could. You've got good doctors, a choice of well-matched donors (did they pick one yet?), and from what you've said you've kept yourself otherwise healthy, so you've got everything going for you.

In a way, the practical details of preparing for a transplant are like preparing for an out-of-town vacation. You want to take care of loose ends, make sure other people have what they need while you're away, square things with your employer, and so on.

For the transplant itself, you'll want to know exactly who on your "support team" of family and friends will do what. When people offer to help, I've learned that you shouldn't say thanks but leave it open-ended. It's better to say thanks and give them specific assignments. People who are happy to help need to know what specifically to do, and each time you'll have one less thing to worry about.

During the transplant itself, family support is usually the key, for everything from personal comfort, transportation of people and things, communication with your support team, and advocating for you with the doctors and the hospital. As the patient, you should have only one job: to get through the transplant and to get better.

My wife and I learned that there are good days and bad days, not steady progress from a low point to a cure. You have to notice when a given day is better than the previous day, and appreciate that it happens more and more often as your health improves.

Please let us know how things go as your transplant date approaches.

[Data]

Originally Posted by SkipM

Dr.'s office called today and told me that I am being admitted to the Hospital of Unv of Pennsylvania on Friday Feb 19th to start getting ready for the transplant. Originally I thought we were looking at March or April.

Getting my head wrapped around everything because this is real now.

Trying to cram everything into 3 weeks. ie Taxes, College Visit, life.

I've been waiting a long time for this and am looking forward to starting this chapter. I know it will be hard but I have full confidence this is the cure.

Any advice is appreciated.

Skip,
I can't offer any advice as I am about in the same situation as you are (my admission date is 16 Feb) but I would like to offer you best wishes. Hope your transplant goes smoothly!!

Cheers

Data

[bailie]

Skip, we wish you the best. The experience is very interesting. You will be working with very good doctors and nurses who will take a special interest in you. Through the whole process be attentive to what works for you or doesn't work. Try to sleep as much as possible when given the chance. Your caregivers will be so important, communicate well. Ask questions.

[PaulS]

Hi Skip - the experience can be inspiring, humbling and sometimes fairly unpleasant, but ultimately uplifting - you can now start fighting to be cured and healthy! After only 150 days I feel remarkably better than before the transplant when my disease was taking a slow but steady toll on me for years. You sound like you're in a good frame of mind. Some random advice -

Can't thank your care givers enough - my nurses and doctors were great - my wife was amazing - they all appreciate being appreciated.

Keep everything as clean as possible - I limited visits to wife, kids and brother - and made sure they wash and wear gloves. Have disinfectant wipes to wipe down everything - table surfaces, remote controls, phones, handles - wash your hands frequently and use mouthwash to help avoid dry mouth and sores from chemo - keep your teeth clean. Take and enjoy showers - I initially hated them, but learned from this board to relax and find some pleasure in standing in the warm water - and the washing became a ritual that forced me to get out of bed and on with the day.
.
Prepare where you'll be after the hospital and make sure its very clean and as disinfected as possible - nows the time to make any home repairs, fix or replace appliances - thorough clean and dust/ sanitize everything you can. I was a bit fanatical, but I found the cleanliness rituals comforting and likely very helpful.

Listen to music in the hospital - don't stop eating - even if its only rice crisps - take time to do and enjoy small tasks - taking showers, putting on lotion - they became little rituals for me and something to focus on

I found email and this board helped me stay connected to the outside world during five weeks of semi isolation in a hospital room.

Stay positive and believe you can overcome any setback.

Best wishes,
Paul

[marmab]

Good luck! Wishing you the very best outcome. Being in as good shape as you can be going into the transplant will serve you well.

Previous posts have offered excellent advice, so I won't add anything other than to concur that a computer was a life-saver. I had my transplant far from home, so the computer was my connection to friends and family.

My thoughts are with you.