Post Transplant Question

[Cam]

I have been out of the hospital now for 11 days. They are taking my Hickman line out on Monday, YAY I hate having the lines in my chest. They do not want me to drive more than like 5 to 10 miles now even though all my numbers are a lot higher than they have ever been. My Hgb is over 11, platelets over 120, and ANC is 4. How long did everyone else have to wait to drive? When do you get your taste back? I am ready for food to taste like something other than unflavored oatmeal.... Also is wierd since my taste is gone my smell is heightened and that is my main cause of nausea. The smell of cyclosporine really triggers it. I know I am impatient, if you ask my wife and kids God left that out when he made me... LOL I hope everyone is having a better new year and hopefully those that are waiting will get matches soon.

Thanks..

[Neil Cuadra]

Cam,

My wife was at home for 2 months after being released from the hospital following her matched-unrelated-donor transplant. It wasn't about driving, but about the risks of infection out in the world.

Perhaps that was overcautious, but we know another patient who ended up having health setbacks after taking unnecessary risks right after a transplant, contrary to doctors orders.

If you press the doctors they may relent on the stricter orders, but isn't sticking out the wait safer in the long run?

I'm glad you'll be done with the Hickman. It served its purpose and now you're safer without it.

[Cam]

Well the real reason for the driving is that my wife has to go back to work. I have to be able to get my son to school and myself to the hospital to make it all work easier. I really avoid places like the plague...

[BrianFlaigmore]

When I was released from City of Hope in Los Angeles +100 I was allowed to drive from San Diego to LA (2 hours) for my appointments alone within a couple of weeks and my numbers were quite a bit lower than yours. It's definitely a convenience to be able to drive, but perhaps there is good reason that your doctor keeping it a slow process. I would tend to blame Cyclosporine for all of your nausea/smell issues since the stuff tore me apart to the point we had to dis-continue it for Tacrolimus. But it's probably just my bias (:

Best wishes on your post-transplant days! Brian

[Mary4Mike]

I don't remember the time period they gave my husband not to drive, but on the way home from the hospital, he had me pull over in a rest area where he took over the driving. He drove to all his doctor check ups afterwards. We were 1 hour and 15 minutes from the hospital. I am not saying this was proper by any means. I am sure the warning is because you are in a weakened condition and your responses may not be up to what they should be considering what you have just been through regardless of the fact that your counts are coming back.
As far as taste, it took a good 2 to 3 months for my husbands to come back. Also, he couldn't stand warm or hot food. He preferred sandwiches, cereal, etc. He also had issues with dry mouth and had trouble eating because of that. I don't remember the heightened sense of smell. He, too took Tacrolimus, then was switched to Sirolimus. After 3 years, he is off everything. His only issue is dealing with high iron because of the numerous transfusions. He does phlebotomy every week and with the Lord's help, it seems to be working.
There is Light at the end of this tunnel. Just listen to your docs and be cautious when around other people~~~~especially this time of year!
All the best!

[mausmish]

I can't remember how long I waited to drive. It took my taste buds a full year to return. For me, pretty much everything tasted very bad - not without flavor but with a horrible bitter/sour flavor. This much time is apparently uncommon, particularly since I didn't have any immunosuppressants. However long, don't give up! Eventually things will taste better again. I also had a heightened sense of smell. How are you feeling otherwise?

[Cam]

I feel good. I actually dug out my running shoes yesterday and I think tomorrow I will get out and do some walking... Time to get out of the house and start working to get better... Right now they can not decide if I have a slight case of GVHD or an allergic reaction to a drug I am taking.. But it is a rash and no biggie... Thanks for asking...

[mausmish]

Glad to hear you're doing so well! My doctors are alwys happy about a little GVHD, "just enough to keep the cancer away"!

[Lori Patrick]

Cam, Wonderful news that you are feeling so well. I did not lose my taste buds while in the hospital. When I came home everything smelled like the hospital. I actually gained 20 pounds during my illness and with the prednisone I am on for the skin gvh I am not shedding any of that yet. As for driving, I was way too weak to drive. Maybe that is partially because I was 51??? I took it easy and napped a lot. Hang in there. I am 2 years post transplant this Friday. Woo Hoo! Blessings to you, Lori

[Cam]

Thank you all for your continued support. I have had one belief through out all this. You can get up every morning and decided is today going to be good or bad, I decide they will be good then work to make them that way... And having gone through this so far I find that has helped me a lot...

[Lori Patrick]

Just remember that Cam!

[gramous]

hello Cam,

how are you? I don't see any news of you for a while... hope that you're fine.
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