Caregivers, family members of transplant patients

Comment

Comment by Diana & my hero Jerry (he donated to my son) on January 11, 2010 at 10:06am

Hello Donna, I would suggest AARP as they advertise supplemental insurance through another company. I forget the company but the AARP website would have that information. Good luck. What state are you in? If you are in California and low income Medi-Cal might be of help. Or check with your state and see if they have any supplemental programs available.

Comment by Donna Mellon on December 17, 2009 at 11:09am

People do not understand the effects of immune suppression and how my husband needs to take off from work for various appts. They think you can just get better. My husband is not working (worked since he was 13 yo) now and is very upset that he cannot keep up with other people his age.

Comment by Pat Fuller on November 24, 2009 at 4:44pm

We asked our transplant coordinator to call our daughter-in-law to explain. I think the message got through this way. Most people just don't realize the effects of the immune suppression and the risks involved. I know I didn't until it became our reality.

Comment by Ramona on November 23, 2009 at 7:40pm

I agree with Flo - and I'm a slow learner, but I am getting to where I don't care what other people want or think - I do what's best for me and for Dean (transplant 21 years ago). Pleasing others is not worth the health of your husband. Just tell them that you love them but you're doing this for your husbands best interest. You don't have to justify yourself to anyone.

Comment by Flo Berry on November 23, 2009 at 6:59pm

Pat - there will be always be some who will just never understand. To some it's just another type of surgery - they don't get the whole idea of the immunity suppressed challenges that you'll face for the rest of Ken's life. You have to do what is right for you both - you've been through enough to risk anything just to 'please' someone else. Hopefully someday they'll understand and as time goes on you both will find what you will be able to do comfortably and enjoy many more holidays to come.

Comment by Pat Fuller on November 23, 2009 at 6:42pm

I'm having some difficulty getting some family members to understand why my husband cannot attend the family Thanksgiving Dinner. His transplant surgeon told him to stay home. How do you handle the restrictions and get people to understand?

Comment by Jennifer Wheeler on November 20, 2009 at 9:21pm

I can totally understand my husband is only 3 weeks out from a heart transplant and we have two active teenagers....I am always with lysol in hand and santitizer at every corner in my house. I try to keep their company to a minimum but it is very hard for them to never be able to have a friend stop by.

Comment by Flo Berry on November 20, 2009 at 7:28pm

I certainly understand, Danette. It was a scary thing for us the first time my husband came home and my grandsons would come over. It seems one or the other would cough or have a runny nose. Joe stocked up on Lysol and I always wiped things down with Clorox wipes. We keep the antibacterial cleaners handy in our pockets and even the kids have learned to use them. It is something that they will get used to as time goes on. I think you'll also find that they'll build up natural immunities to the people they're around the most. We're just most careful anyone has a fever or more severe cold symptoms and stay clear if needed. It's something that they will learn, I'm sure. Yes - you're the one who'll need the vacation. The caregiver gets the brunt of the everything, all the responsibility and many times the least amount of thanks. Hang in there - we're here for you and we'll do what we can. It would be nice if one day all of us caregivers could just take a cruise and have everyone wait on us while we lounge in the sun.

Comment by Danette Davis- Park on November 20, 2009 at 12:40pm

Trying to keep the flu out of the house...my 6 year old transplant recipiant is home now with my 11 year old who is in 6th grade and everyone seems to have a runny nose...Lysol is in stock along with Clorox wipes and a do not enter sign on the front door...mask and gloves everytime we go outside...this immune suppression is tough to handle and the girls are not understanding the severity of this... I need a vacation!

Comment by Ramona on November 14, 2009 at 7:40pm

That's very encouraging, Pat. We'll keep sending positive healing energy their way!

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