I just finished ATG H today. Drs are saying I will be dismissed tomorrow. HELP

[Tim Caz]

I was diagnosed with saa earlier this month. The hospital in Providence RI wanted me to do BMT right away seeing I have 5 living siblings. I came to Mass General in Boston for a second opinion and here I am fresh off a 4 day dose of ATG H. The drs are saying I will be released tomorrow. I have 2 great kids at home ages 4,5 and a beautiful wife. I would love to get some insight as to what I should expect in the next weeks or even months so I can prepare myself. Long roads ahead but I am very positive and want to see my kids!

[Whizbang]

Tim, your story is very close to mine... except for MDS vs. SAA:

http://forums.marrowforums.org/showthread.php?t=3792

Good luck to you, and you can PM me if you need any personal advice...

I will be traveling down that path before you...

[Neil Cuadra]

Tim,

If your ATG experience turns out to be like my wife's ATG experience then you won't be in pain but you'll be very easily fatigued, so your wife will have to do more than her share of keeping up with the kids and the household. But patient experiences vary widely so it's hard to say. You'll know very soon!

You may gradually return to normal health and not have to think about the BMT option at all, and I hope that's the case. But I wouldn't be surprised if they want to test your siblings so you know if you have a match, just in case.

I'm puzzled why they recommended a transplant so quickly. ATG is almost always the first treatment approach. May I ask your age?

[Hopeful]

Hi Tim,

Be *very* careful to avoid infection while at home. Hopefully, you will feel stronger every day

[Tim Caz]

Thanks for the replies.

@ Neil I'm 38 yrs old. The Providence hospital doesn't see these cases often. Only 1 a year or so. That's why I came up to Boston for a second opinion. Very happy I made that decision by the way.

My platelets always end back at 2, white blood count .03, red 5.4. Have been getting transfusions. Red and platelets go up but end up coming right back down. Getting discharged tomorrow and will discuss my meds with Dr Attar and see what I need to do.

[DonnaM]

I went home the day after 4 days of continuous ATG infusion. I was neutropenic and had to be very careful about germs, etc., but I was not nearly as low on neutrophils as you. My doctor said to be very careful about catching things from my grandchildren. I had to ask everyone who came into my house to immediately wash their hands, and until my neutrophils got to a certain point (don't remember the number) I had to wear a mask out in public and around my grandkids. My doctor was disappointed at the 2 month mark after the ATG that I didn't show any response and wanted me to check into having a transplant, but I had heard that people should wait as long as 6 months for a late response. Sure enough at about the 2.75 month mark, I was able to get off of red blood and platelet transfusions, and I wasn't neutropenic. Going to an outpatient clinic for frequent transfusions may make you feel like a "sick" person, but you might be surprised how soon you will feel better.

[curlygirl]

Tim,

I wanted to add that the ATG burns through your platelets and/or blood. My son would be able to go a week between platelet transfusions but needed them every other day while on ATG and for the two weeks after. An older thread on here mentioned that ATG has a 7-10 day half life so it will stay in your system for 14-20 days. Sure enough when my son hit the three week post-ATG mark he only needed platelets once a week again. So some of that could be ATG related.

Be very careful at home. Don't do too much. If you're an active person it will be hard but you will have time to catch up when you are better. Also, if your wife is overwhelmed perhaps you can hire a cleaning person to come in once a week to help and you can sequester yourself in your bedroom while they're cleaning? It's been the cleaning that's been overwhelming to me. Because you're still doing everything you did before (take my other son to his activities, help with school-work, go to work), and then on top of that feel the need to clean the house everyday instead of once a week and the bathrooms several times a day. I may go to the in-house cleaning solution soon because it's hard for my husband and I to do it all.