Wednesday, August 26, 2009

Returning the favor.

"A friend is a friend
Nothing can change that
Arguments, squabbles
Can't break the contract
That each of you makes
To the death, to the end
Deliver your future
Into the hands of your friend"
- Pete Townshend

There are moments in life when things hit you in the face and make you pause, just for a moment, to consider where you are going and what you expect out of the journey. Sometimes, it's better not to have any expectations and just go with the flow. Sometimes, you just have to fight against it. Sometimes, it's odd being on the outside looking in, when usually, it's the other way around.

Reality has a strange way of being a harsh taskmaster.

I have two friends, one from college, and one that I know from my organ donation/liver disease circle of friends. One is dealing with the sudden appearance of strange symptoms that have left him numb in all his extremities, and exhausts him when he climbs a flight of stairs. The other is in a hospital in Hawaii, and is battling for her life while she awaits a liver transplant. It's a bit of role reversal, as usually I was the one that was either sick or in the hospital.

Scott and I go way back. We met my sophomore year at SUNY Buffalo. We were both on the campus volunteer ambulance, both from the Bronx, (excuse me, he was from Riverdale. They don't consider themselves as being from the Bronx. yeah, right.) I knew almost from the beginning that we would be friends, especially when he made a snippy remark at me, and I responded, rather in a crass manner with a remark about the health of his dog, which I didn't know whether or not he even owned. Let's just say that his comeback stopped me in my tracks.

We've been friends ever since. He's a notorious practical joker, of which he takes great delight in inflicting on me as often as possible. We found that we shared a love of many things, from music to movies, and we hung around in a group of closely knit friends back then. As often happens however, people's lives diverge. He stayed in Buffalo after we graduated, got married a year before I did (I was in his wedding party), had a son, got divorced, and then remarried.

We would go through long stretches of not talking to one another, not because something was wrong, but because life was just getting in the way as well as the distance. We did try to get together when we could when Mrs. N. and I would visit Buffalo to see her family, which was at least twice a year, most years.

Now that we live only an hour apart from each other, we have probably seen each other less in the 10 years I've been here in Rochester than at any other time. Go figure. Still, I was unprepared for the phone call I got from him earlier this week. He told about some odd symptoms he was having, numbness in both extremities, and his extreme fatigue after climbing even one flight of steps. These symptoms started slowly, and after a few weeks of not getting any better, he went to the doc for a series of blood tests and other procedures.

All came up negative. My own former paramedic brain went into overdrive, and and the first thing that came to mind was multiple sclerosis. The docs had pretty much ruled that out he said, but they were going to do a CAT scan anyway to check for the lesions that are typically found with them. His symptoms were atypical for MS, but they were going to explore that avenue anyway. Today however, I got a text message from him that was a little unsettling.

At 6:30 this morning, he had a spinal tap done. It seems that his doc began to put some things together, and suspected that it might be Guillain-Barre Syndrome. I needed a slight refresher on this syndrome, but it all started coming back. It's an autoimmune condition, and there is no real cure, though symptoms can be manged, if it is caught in time. The spinal tap will more or less confirm the diagnosis, as there is no specific test for it, other than the presence of proteins in spinal fluid.

This was a shock, especially knowing Scott as I do. He's a big guy, a little shorter than me, but big, barrel chested and very strong, so to think of him as being debilitated by anything, much less something like this was unthinkable. it has affected his ability to work regularly, but his current place of employment seems to be working with him and supporting him. (He's a nurse for an outpatient program that services people with developmental disabilities, amongst other things.)

We're going to try to get together next week. I'm going to go out to Buffalo and we'll have lunch at his home, on me. I'll bring him some Chinese or Thai food. We've been through a lot together, and he is still one of my best friends. There is actually more going on with him, that has made this situation even worse than it already is, but I'm not at liberty to bring it up here, until he gives me the OK.

Then there's Tammy. Tammy and I met through through a support group for people with liver disease back in 1996. Along with my friend Susan, who died in 2001 while waiting for a second liver transplant after her old liver disease returned unexpectedly, we split away from the original group due to the fact that it was too big, too out of control, and formed a smaller, more intimate and private group. The three of us were the 3 Musketeers in many respects, Tammy from Long Island (at that time), Susan from New Jersey, and me from the Bronx. Susan and I were transplanted within two weeks of one another, while Tammy was newly diagnosed with her autoimmune liver disease and was still pretty healthy at the time. We finally all met face-to-face in November of 1997, a few months after Susan and I were transplanted. We all stayed close, even after I moved to Rochester, and Tammy and her family moved to Austin, Texas.

Tammy had a multitude of issues stemming from the medications she was taking to slow the spread of her particular liver disease. In particular, prednisone was the demon that haunted her an literally made her crazy. Things got to the point a few years ago when she simply stopped taking her meds, unbeknown to her docs at first. This caused a great deal of consternation on the part of the first transplant service she was registered with, and she was labeled "non-compliant," which really wasn't the case. The reality was that the transplant team she was with was not addressing her issue seriously.

She finally wound up getting registered at a major transplant center in Texas, and they did not put her back on prednisone. somewhere about 6-8 months ago, she moved to Hawaii to be closer to her daughter and new granddaughter. She was estranged from her son (long, long story there), and also close with her other daughter, who was still living back in Texas. Along the way she got divorced from a husband that could not deal with her illness, and wound up treating her like garbage, along with the rest of the family.

Flash forward to a few weeks ago. It's now been about 13 years since her original diagnosis, and she is in end stage liver disease. She called me from a hospital in Honolulu, where she almost died from a ruptured esophageal varice. She was stabilized, but it was clear that she needed a TIPS procedure to reduce the varices, and buy her more time to get transplanted.

I was fortunate, in that I never had to go through that procedure, even as sick as I was. For Tammy however, this is the last option. She will die without a transplant, and she almost didn't want it. I had to convince her to go through with it. Why? Because after a transplant, she would be on prednisone for a time, and that just scared the hell out of her. She did not want to go through steroid psychosis again. I reassured her that more than likely, her time on prednisone would be short, as they try to wean transplanted patients off of it as soon as is feasible. I am on small doses of it for life, due to the nature of the liver disease that I had. It helps keep my old disease away, which is fine with me.

She had the procedure this past Monday, and it seemed to go well. Now, it's all up to the wheel of fortune for her, and her own will to hang on until she can get transplanted.

It's strange being on the outside looking in. They both were there for me, so now it's my turn to return the favor.

UPDATE: Scott's spinal tap came up positive, so now they're deciding on the best course of treatment for him Keep your fingers crossed.


Peter said...

It's strange situation indeed being on the outside looking in, especially when it involves such life threatening events.

But most of all, I admire how you were there for each other, keeping in touch in spite of the distance that separates you.

I can only hope that fate will show its kindest face for both Tammy and Scott.

jay said...

I am sorry that your two good friends are going through these two separate, but both severe, conditions. Hopefully Scott will make a good recovery. I have no real knowledge on Tammy's problem, but whatever happens I know that your support and help will be invaluable to her. Good for you for 'returning the favour'.

A.D. Sisson said...

In times of need we all come to the aide. You have been called to return a favor. It's most likely in your nature. Look at you past as an EMT.

I wish I could deal with an issue that has cropped up, in force, in my life. See past blog posts.

Bina said...

Mr. N. How very, very sad indeeded. Your friend with that syndrome (cause I did read the article), that is just so awful! I have never heard of it before, but they think vaccines may be the cause? Has he gotten any of those recently? That poor man. I am so very sorry.

No one knows better than you what it's like to wait for a liver. And unless someone has been there, they couldn't have a clue. It's so very sad that people have to go through this. I always wish there were some way I could help. And I always wonder why a liver can't be cut in half an given to some one. I mean, don't those things regenerate? I have no clue, but I'm just wishing something like that were possible.

You are such an excellent person, as I'm sure your friend is, and it must be a truly awful feeling just waiting to live, and not knowing if it's going to happen.

Both your friends will be in my prayers and thoughts. And you my Dear, are such a true friend.

Mr. Nighttime said...

Bina - Thanks so much for the good thoughts and kind words. To answer your question, yes, one can donate part of one's liver to another. The procedure is known as an adult-to-adult living donation, and is done routinely here in the U.S. It is possible, as you said, because the liver will regenerate. The donor must give 60% of their liver to the recipient, and both will have full livers within 4-6 weeks. There are risks of course, and also there is the task of finding someone willing to donate and who is a compatible blood type/body size match.

Joanna Cake said...

Worrying times and stressful ones too. If you want to be strong for your friends, make sure you continue to take care of yourself x Fingers crossed for good outcomes for both your friends.