RE: article TRANSPLANT WIFE SPEAKS OUT/ update on jim/jason

[Guest guest]

barb, this "Maybe I've been this strong all along" was a wonderful story, giving an interesting perspective. thank you so much for finding it and sharing it with the group.

reading it stirred some feelings in me, i must say. someday, God willing, i hope i'll be given the chance to coach/counsel/advise other woman in the same situation as jim and i and our family faced... that is to say, someone who must contend with both a husband and a child in side-by-side operating rooms undergoing a live donor transplant. to her, i will say that although it's important to prepare for the tx, there may never be enough adequate preparation for her to successfully contend with the situation of her own child going to such lengths to save her husband. i've thought and thought and thought about this... and although i do love jim, all my emotions must be borne out of "motherlove" ...jim and i came together to "make" jason, but for 9 & 1/2 months (yes, he was postmature) jason and i "shared the same body" as he grew inside me... i fed him at my breast... i nurtured him, read to him, kissed away every toddler tear. so despite there being an incredible marital bond between jim and i, there is also that incredible bond which exists between mother and child... especially a firstborn and only son.

and i have to say there was a time when i didn't regard the surgical risk as acceptable (taking someone perfectly healthy and placing them at surgical risk, since there have been unexplained deaths to the donor, with this surgery). one of the hardest things in my life i ever had to do was allow jason to be his own person and step aside from my own legitimate worries, and allow our son to do what he truly wanted to do for his dad. thank God i was finally able to reach a place where i was able to respect and accept how jason's desire was so pure and sincere, that this somehow was able to overcome my own concerns. if i had inculcated my will into the situation, how would that fare if it were to ever be construed that maureen's will prevented jim's life from being saved?

this experience has understandably drawn father and son even closer to each other. it has also drawn jason and myself closer to each other. but there is a wonderful three-way bond that exists between the three of us now, and like in the article barb shared, my two guys realize they cannot comprehend how difficult this all was for me, their wife/mom. was i always this strong? i would say no... but others have said i've been in training for this my whole life. really -- i recently received a very heartfelt e-mail from jim's barber, who reminded me that he saw all this organization in me back when we were underclassmen in our high school creative writing class.

i would like to share with the group a letter from jim (who, remember, was a man of few words before his tx!); you all might appreciate his perspective on things... this is a letter he wrote a few days ago, and just had me send out to his aunts, uncles and cousins this morning:

December 28th, 2001 (Tx-date + 21 days)

To all of you in my family, both near and far... my uncles, my aunts (and including, as Maureen is fond of saying, my “garden variety” cousins), and my extended family (in-laws)... all I consider to be my family, whose many prayers and caring thoughts and concerns are all very deeply appreciated. Each one of you has touched my heart, for I was and am and continue to be overwhelmed with your love and care.

As Maureen and I don't have access to every e-mail address we would like, and since not every one has access to a computer, I would like to ask Uncle Dorleigh and Aunt Bonnie ( & /or ), Uncle Avery and Aunt Marilyn, Uncle Art & Aunt n, Joanne and Terry/ to please share this with all my Aunts and Uncles and Cousins, if possible.

What can I say but thank you, thank you, thank you... for all your prayers and support via all your cards, calls, e-mails, care packages, positive thoughts and caring concerns. and I are doing great! What a gift from my son! What a Christmas! I don’t think I will ever fully comprehend what he went through for me, as a healthy, 23-year-old young man (with toned and muscular body courtesy of “Bill Body for Life”), but what a gift, nevertheless.

He is currently at his home, enjoying his bed, computer, music, toys, and friends, and plans soon to return to work. We had fun together recuperating, walking (or i should say shuffling), just lying down and generally loafing around together for a short time up at our hotel in LA, even though I was always “behind” him on the healing curve. He had his staples removed on day 7, whereas mine are still in me (darn) and scheduled to come out on day 31 (this due to the immunosuppressive medication, which slows healing). He spent the night with us on Christmas Eve, which was great, and our family went to Mom’s/Grandma June’s house on both days to enjoy a bit of family time.

Maureen was truly a fantastic caregiver, for both of us. It was no easy task for her to always do my (and ’s) bidding. She had a huge mountain in front of her, with both her husband and her son on operating tables at the same time. I think only another wife and mother facing a Living Donor Transplant could come close to understanding the enormity of what was being asked of her. I still have a very hard time comprehending it all, whenever I try to understand the magnitude of what she went through. She is very special to me, a true gift from God. She was my very strong advocate with all the medical people, family and friends, as well as my information resource (largely through the PSC Internet support group, to which she has belonged for the last few years now, to better prepare us all for the eventual transplant).

With my years-long decline due to what has been for me some very chronic diseases, both of us eventually embraced an attitude where we just considered each new day together to be a gift from God, and the “best” day of the rest of our lives. During this last year, there were many days we considered the best in our marriage -- our vacation in Ireland, for example -- and this philosophy of appreciating all the little things helped see us through some very difficult and dark times. And now, through our son ’s incredible gift, Maureen and I now share the dream of someday getting ourselves a motor home, so we can travel together and see more of this great country of ours, experiencing all the sights, beautiful scenery, interesting people... and for me the food, because I can finally eat and enjoy food now.

and Jillian were great as their brother’s caregivers when he was discharged from the hospital. They also were there at the hospital with their smiles, not to mention their wonderful foot rubs for my chemically swollen feet! They were key in helping Maureen by doing laundry, cooking and running various errands.

I’m doing great -- how could I not, with a 47 year old body which now sports a young and healthy 23 year old body part? Each day I see little changes: in addition to having a bit more energy; my teeth are, for the first time in years, finally yellower than my eyes. Or should I say my eyes are now whiter than my teeth? Anyway, it’s been a long time coming! With my “Mediterranean” skin color, I was starting to believe the rumors that I was the “orphan” of the family (according to my brothers). :-) Now I look more like my brothers, except I'm the good-looking one of the bunch. Now, I don’t want to start anything, but I think I remember my mom saying exactly that (but don’t you go asking her, because, you know, she’s 76). Boy, if word got out on this, I surely WILL be the orphaned one... oh, well.

And that rumor about me talking too much? Well, sure, just ask the doctor who performed an endoscopy on me because of a bleeding complication I had! The day after the procedure, he came into my hospital room and confirmed the rumor by suddenly turning to Maureen and saying, “you’re right, he sure does talk a lot!” (I can only plead the fifth, because I was under medication during that procedure... so, no fair).

("hidden" side note, from maureen, who won't let jim know the following has been added this in: our cell phone bill JUST came in, and i pleaded with my dear husband NOT to tell me how much it was. ay-yi-yi! jim agreed to my request, adding "most" of the cost was due to his chemically-induced chatty cathyism... one of his calls was 45 minutes???). and now, back to jim:

As far as where I am to date, let’s start in order of what’s bothering me the most: my feet, ankles and legs are still swollen, so that means socks (or slippers) only. There’s a constant leak from my abdomen (the site of the JP tube/drain). This has been stitched two different times in an effort to reduce the problem (first by a surgical resident before being discharged from the hospital, then by a transplant surgeon when I returned to clinic for labs). The leaking is getting a bit better, but it continues. They say it will stop, in time. So, in the meantime, I’m buying stock in these wonderfully absorbent “Serenity” incontinence pads, which I put on the worst spot -- my right side. Then there’s the matter of staples at the incision site, about 30 of them, which won’t be removed until January 7th (I hope), when Maureen and I go up to LA for transplant clinic. Lastly, there’s a problem with just feeling “comfortable” ...this would be due to lack of sleep (probably due to medications), or the lack of muscle mass from the disease wasting my body away prior to the operation. Or both. My upper arms are as big as my brother ’s wrists. Even Jillian can beat me at arm wrestling now, but don’t let that get out, or I will lose my membership to the Tool Time Guy’s Club!

What can I say, but all this bother is minor -- a mere speck in the scheme of things -- compared to the magnitude of the gift I received, a renewed chance at life. I figure that from this day forward, my responsibilities are to continue loving my wonderful wife and our three children, along with being 100% compliant to the doctors’ orders (to take care of this brand new body part which God saw fit to bless all of us with). Again, what a wonderful gift of ’s love, and a precious gift of life this is!

With all my love, I thank you,

Jim

(p.s. and happy new year to everyone in the group. may 2002 be a good year for us all...

love,

maureen)