A Punter and a Health Crisis: A Study in Character

[zanemay]

In mid 2000 I left for Thailand for the first time. Matty, my girlfriend of two years, said she felt a little dizzy the evening before I left. It didn't seem serious and I attributed it to anxiety about my trip and the fact that I would be away for a couple of months. As it turned out, this was really a symptom of impending kidney failure. Shortly after I returned she felt unwell again and went to the hospital. She was told to go home, get her things together, come back in three hours - they were going to operate! "Your kidneys aren't working," is not an easy thing to hear. And since she has her own business, established over the last 25 years, as a seamstress and a dressmaker, it was even more difficult. But there were three things that really helped her through the ordeals that would come - she followed doctors orders to a tee, she kept up her exercise, and she always maintained a positive, upbeat attitude. The same cannot be said for me.

 

After I left she was in the hospital for a week without telling me - she didn't want me to worry. I was having my first trip to Thailand, North to South, Lonely Planet Guide book in hand. Just another trip like those to Ireland, Paris and Mexico. I didn't know anything about the girls in Thailand. It wasn't in the guide book. But I had an extraordinary time anyway, particularly in out-of-the way Nan province where a couple of different people took me into their care. "I love this!" I thought.

 

Since Matty is not an American citizen, in fact is an illegal alien from the Caribbean, she always felt the need to keep a low profile. Since she was poor, she had always used the local County hospital. We got hard lessons about using the County hospital, a facility whose staff of doctors would all rather work someplace else and generally are just transitioning. In the first place, although they had diagnosed her high blood pressure years ago, they did not follow up and treat it. "You were dropped through the cracks," they told her now that it had killed her kidneys. In the second place, although they were very nice and seemed to have plenty of very attentive staff - from the doctors down to those who cleaned the floors - they would botch this first surgery.

 

So a very unhappy time started for us. Matty had surgery to install a hemodialysis shunt in a vein around her neck. My memory of the process is bit confused because she had so many IV's and catheters painfully installed. She was in the hospital for about a week and I was something of a wreck. When life gets this messy you find out more about yourself than you want to know. I was so conflicted! One of my early reactions was to want to run away - maybe to Thailand. I had just retired to travel. I had just found Thailand and was smitten. I was thrown into a guilt-ridden turmoil.

 

One thing I can tell you from my experience with the diseases of loved ones - they come packaged with a burden of guilt. I don't have many friends, and five years previously I had lost one of my very best, aka Mom, to a slow cancer. A straight-laced little Italian lady in many respects, she always found ways around the challenges that I presented to her unconditional love. The leaving of a good farang wife to live with a black woman. "Black!!!" she said at first, but came to love Liza in short order. My crazy, intense love for a beautiful, no-good woman my mother tried to warn me off of. When we got Mom's diagnosis - the get-your-affairs-in-order one, the how-long-does-she-have-doctor one, the it-could-be-a-month-or-it-could-be-a-year one, when we got that big, bad news the guilt began to spread like a pool of blood. First there was feeling ashamed that I was worried about the impact on my life. Then there was the feeling that I wasn't doing enough, no matter that I did the two hundred miles round trip every weekend and spent all of my time off with her. And finally there was the guilt when the time came that we knew that as much as she wanted to fight to be with us, it would just be better all around if she died.

 

So I was familiar with the guilt already. Now my girlfriend of two years is diagnosed with a chronic disease. What will this mean? The guilt was coming, but I would stand up to it.

 

There was another feeling too. There was the...and here I'm at a loss for a good word...you can't say joy, can you? You can't say pleasure? But really it is kind of a joy, taking care of the sick - a bit of purification for the impure. With my mother the burden of care was shared with my sister. With Matty, in spite of the fact that she has two adult sons and loads of friends, I was the nominee. And I really liked taking care of Matty. I still do.

 

After she was out of the hospital and she had settled into hemodialysis twice a week, I got to work on my conflicts. The just-retired oh-so-selfish punter, recent discoverer of the joys of Thailand, was faced with a chronically ill girlfriend. I know that many people would make a decision of perfect self-sacrifice. I didn't. My decision was impure but it stood up well: I would give myself over to taking care of Matty all the time I was home. Whatever she needed I would do. BUT I would not stop my travels. I would not park my healthy, happy, active life for a disease. Old age and infirmity will sideline me someday soon, but I will not give in yet. I told Matty, "I'm sorry" and booked my flight. She said that if our roles were reversed she'd take care of me no matter what and she wouldn't leave me. I said I've never asked anything like this of you or anyone else. At that point her primary need was for someone to drive her to dialysis twice a week. She felt fine, did her work and walked three miles a day. I would leave her with full use of my car, but she couldn't drive to dialysis because she was woozy afterwards. She would have me (without any apparent guilt of her own BTW) give up my life to be her driver. She has a big ego, so the appearance of having a totally devoted partner would be an added perk. I was plenty wracked with guilt at that point, and thought her friends and family would think I was no good. Maybe I wasn’t. I said, "I'm sorry, but I'm going. You have to find other ways to get to the clinic." I went and she did. It wasn't so difficult for her and I carried my guilt okay.

 

When I came back three months later the decision was made to replace the dialysis shunt around her neck because the people at the County hospital had done such a bad job of installing it that she had to lie absolutely still during each dialysis session of three long hours. The other patients could sit up, talk with their friends or watch TV during their three hours. It was terrible to see her like that. When we went for her surgery, they checked her in in the morning and out it the afternoon. She had a lot of pain that night, took Vicodin, ended up falling on the floor comatose, wedged between the bed and the wall, eyes open, un-responsive. Macbre! I called her son and we got her into my car. Yes, they want you in and out of the hospital in a heartbeat these days, don't they? They took her back and she was there for eleven days! Dumb asses!

 

I want to repeat now: Through all of this Matty kept an unwavering, upbeat attitude: "Don't worry. I'm not going to die. I'm going to live a long time." She was going to do whatever she had to do for as long as she had to do it, and she wasn't going to let it get her down in the meantime. Awesome girl!

 

After the surgery things became routine. The dialysis went well and because she was handling everything so well she was given the option of home dialysis which is done with a portable machine about the size of a microwave over. Every month about 50 20 pound boxes of fluid are delivered. Every night you hook up a tube into an abdominal shunt. A couple of quarts of fluid are pumped in, stay for two hours and are pumped out. This is done four or five times. This cleans the blood of toxins. In the end she was in bed for twelve hours every night, but no problem, my girl loves the bed!

 

I kept up my back and forth life to Thailand. She slept with me every night when I was home, doing her dialysis at my apartment. When we wanted to travel, which was mostly to Reno or Las Vegas, we would pack up the machine and some fluid and set it up in the hotel. When she wanted to go out of state to a son's graduation, the company that supplied the fluid simply delivered some to her destination. The at-home dialysis was quite an amazing thing to see.

 

As far as my life in Thailand is concerned Matty's big ego sees her through. "You find a good lady to take care of you. That's fine. Just don't bring any of them home to me! I'm not worried. You never find anyone to take care of you like me. But I don't like you eating that puss mon." I told her some things, I didn't tell her everything. I showed her some photos, but not all the photos. "Oh, that girl is nothing compared to me!" I didn't tell her that I had fallen in love a time or two. I'm not stupid.

 

Pretty soon she got on a kidney transplant waiting list - waiting for someone else to die. One is usually on the list for about five years. I was prepared to haul around her machine and boxes of fluid forever, no problem, but I also told her she needed to ask someone in her family to be donor. Her niece had had a kidney transplant and her sister had donated. But Matty was reluctant to ask.

 

(You might notice that I did not volunteer to be tested as a donor and she never asked me to. I also don't volunteer as an organ donor on the various forms sent by the motor vehicle department. That goes beyond what I would do. Of course I'm 58 years old and not the best choice as an organ donor, but that's not the real factor in my thinking. My feeling is that my body is fine, just leave it alone. It won't be fine forever. I'd like to have it fine for as long as possible. Guilty again.)

 

Finally her doctor told her to ask amongst her family and this was the push she needed:

 

June 7, 2003

 

Returned from Thailand as planned to coordinate with Matty's scheduled transplant. I'll have a few days to start getting over the jet lag. I'm prepared for a long slog if necessary. I reserved my room in Thailand before I left, a hopeful reservation three months out. I'll change it if I have to.

 

June 12, 2003

 

Up a 5 AM. Phillip (Matty's 30 year old son) has to be in pre-op at 7AM to begin prepping. But, there's a problem. Matty has had blood in her urine for a few days although it has been impossible to get enough pee out of her for a lab sample. Last night she was able to produce some. It was very red. This was sent to the lab when we reached the hospital. The doctor wanted an ultra sound test of Matty's insides. It turned out that she had cysts in her kidneys. The doctor said this was common with failed kidneys.

 

Phillip was taken in about 9AM and Matty around 12:30 PM. Phillip was out of surgery around 4 PM but stayed in the recovery area a bit long because there was not a room available for him. He had very bad pain when he first came out. The nurse encouraged him to inject more pain killer with the hand button. He said the pain was much worse than he expected.

 

At 6PM Dr. B told me that both of them were doing well and that the kidney was working well. Phillip was out of OR and I went to see him first. He was very groggy and hurting. A little later I got into ICU to see . She was still under anesthesia, but half conscious. She said "Hello Sweetheart" but not much else. She said she had to pee and she did. There was about a quart of urine in the collection bottle at the end of her catheter! The kidney was working great. She had hardly peed at all for two years.

 

June 13, 2003

 

Arrived at the hospital around 11:30AM. Matty was still in ICU and said she may get into a regular room by tomorrow. Her kidney was working well. Around 2PM the surprise word came that she was going to a regular room. A rolling stone gathers no moss in the American hospital today!

 

Phillip is in more pain than Matty. Apparently the donor always has the most pain. They don't tell them that when they sign them up.

 

June 14, 2003

 

Recovering in the hospital. All is well except Matty's blood pressure is high, about 180/100. She is told that this is because of the drugs she is taking. Her BP med is increased to 2 pills (50mg) per day. Before the transplant when her kidneys would not clean her blood, so she go by on a fourth (6.5 mg) of a pill.

 

Matty begins walking around the ward 36 hours after surgery and she and Phillip are visiting each others rooms all the time. I take photos of the two of them and her incisions. She has twenty-seven staples closing her wounds and her stomach is swollen to gigantic proportions.

 

June 17, 2003

 

Despite my protestations that Matty's blood pressure had not been stable long enough, she was discharged from the hospital. Her pressure was around 160/97. She was okay though, just hurting a bit.

 

June 18-19, 2003

 

Recovering at home. Joyce brings a rotisserie chicken and Iris delivers hamburgers.

 

Phillip is cold all the time and in quite a bit of pain. Matty is okay, though concerned about her blood pressure, about managing her meds and about Phillip. Matty is taking anti-rejection medications that border on poison. With various other meds, she is taking 21 pills a day. The bill for the first batch of meds was $2,700 which was paid by Medical because she claims to be indigent. Everything in this whole process was 100% free to her. My little illegal alien is a big burden on the state coffers.

 

On Friday, one week after surgery, I take Matty for her first walk outside. We go for 15 minutes.

 

June 30, 2003

 

Staples removed. We are walking 2 miles a day. Dr. tells Matty she can go back to work! They originally said the recovery period would be three months. This has been three weeks! It is looking good for my return to Thailand, still two months away.

 

July 20, 2003

 

Matty is working regularly. We go in to have her blood drawn twice a week and the results have been excellent. The kidney is perfect and there are no signs of rejection, a good part of the reason for all this is that she had a closely-related, living donor. She is exercise walking at her normal brisk pace and the night before last we pushed it to 2.5 fast miles. She was very tired after that but bounced back by last night to do 2 miles very comfortably. We're not pretending that she's 100% just yet, but she's doing really well.

 

End of Story

 

*****

 

So it worked out. It wasn't always pretty, but we cobbled it together. I gave my help within the limits that I could manage. Matty is a joy to take care of because she keeps a funny, upbeat spirit and she got better. If she had gotten sicker rather better, it would be different. At any rate, we are closer for having been through all of this.

 

I saw medical miracles all around me as I was going into acute care facilities for the first time and seeing people dealing with all kinds of transplant issues. BTW, take care of your liver because transplanting it is a much bigger deal.

 

Surprising fact: When a kidney transplant is done, they don't remove the old kidneys. They put the new kidney in front, down around the bladder.

 

The other amazing thing one sees when one is around kidney problems is the incredible number of people on dialysis. The clinic my girlfriend went to had about twenty stations working all the time, 16 hours a day. I know of four such clinics in my city, but there are probably more. Kidney failure is big business.

 

Over and Out,

Zane May

[Ranger]

Zane,

 

Thanks for sharing this very personal story. I'm glad everything worked out for you Matty.

 

Ranger

[Guest]

Hi Zane:

 

Thank goodness it had a happy ending, I was getting worried there for a while. Your stories are interesting and add variety.

 

All the best.

[loner w/a boner]

That was a very touching story, in many many respects. Honestly, I'm too tired now to comment--it would be involved. I just wanted to say "thank you" for that.