Helloo!

Hello everyone! My name is Marian and I'm starting my 18th year on dialysis.

I read Bill's story and listened to the internet radio interview and thought Wow! this is the 1st time I'm hearing someone like me. I was 29, married with a 4 yr old daughter & 6 yr old stepdaughter and living in Denver when the company I worked for started up a "wellness program". They arranged to have our blood drawn to establish a baseline for things like cholesterol, etc. I joined up, had my blood drawn and when about my business. I had been feeling tired ALL the time, was having occasional leg cramps at night and suffering from bouts of nausea that would go on for days and then go away. I had been to my primary care doc who had drawn blood to look for bacteria & intestinal parasites (we camped a lot), all of which were negative. She agreed that I probably just needed to start exercising, never my strongpoint. So I had joined a Bally healthclub and had been TRYING to complete a single aerobics classes, but I couldn't even keep up with the 60 yr old man next to me. So anyway, I had the blood drawn for this wellness program, and then went downhill skiing that weekend. I thought I was having a heart attack up on the mountain. My heart was pounding SOOOO hard, and I kept falling. After the 3rd fall on the same hip, I finally quit and went inside to wait for everyone else. Did I mention that I was skiing with the corporate bigs wigs at the company I worked for??? By the time I got home, I was so weak, that I slept in a recliner for 12 hours even though we had people over that night. It was as if I was in a coma and I had a HUGE hematoma on the hip that I kept falling on.

The following Wednesday, the lab results came back and my BUN & Creatinine were 130 & 13.5. I called my husband who was an ultrasound tech at a local hospital and told him and he asked one of the docs about it. He called me back and said the doctor told him that those values were "impossible" given my activity level, etc. But just to confirm, I should come to the hospital & they would redraw my blood. I was there for 4 days. I had been trying to ski at 5000 ft with a hematocrit of 18. No known reason, no history of kidney disease, no answers as to why. That was March 15, 1989. I started PD on April 17th. I still remember the surgical resident that came in on the day of surgery to do the H & P and he looked at me and then said to my husband, "It'd be interesting to see just how long she could go without dialysis, given how well her body adapted." They can be a cold bunch, surgeons!

So I started PD, no cyclers then, and was on 4 exchanges a day till 1992. I kept working and would do an exchange at work in the private ladies restroom. I have to say, that the company I worked for was very accommodating. In 1992 I switched to hemo because I was underdialysed. They had changed me to 5 exchanges a day on a 3 liter bag and I was miserable. I'm not a very big person and all that fluid in my peritoneum was making me nauseous all the time and I felt like all I did was dialysis.

In the interim between starting PD and starting hemo, my husband informed me after I had been on PD for 1 yr, that it was too much for him. He worked at a hospital and then had to come home & deal with sickness here too. I still remember the feeling of "being a defective". It was the lowest point of my life as it was my 2nd failed marriage. My 5 yr old daughter and I moved out (I was a much weaker person than I am now. (Now I would have taken him to the cleaners AND kept the house!)

At the beginning of hemo, I had a fistula that never developed and it was difficult to travel (all my family was in Texas) because it was diffcult to stick. After about 9 months of dealing with everything that goes with a small fistula, I went back to my surgeon and asked for a graft. T that time, I thought I would get a transplant and was "on the list". So we both thought I wouldn't need the graft for as many years as I ended up with it. They had "new" material at that time which allowed them to put the graft in and stick it the next day. I got a straight-line graft in my left forearm, on the advise of a great dialysis tech who'd been around a long time. That graft lasted 10 years. It clotted only 1 time, a month after I got it. I had to replace it in 2002 due to aneurysms. I turned down a couple of kidneys and then after 1 friend in my unit died of a heart attack a couple of months after his transplant and then another friend in the unit developed a brain tumor 6 months after her transplant (she was only 19 then), I took myself off the list.

In 1996 I moved back to Texas, where I am now. I raised my daughter by myself and continued to work and go to dialysis. My fabulous daughter is now 22 and out on her own, living in "the big city" and working as a hairdresser. I mark the milestones in my life by her; birthdays, graduations, career. The next one will be her marriage and I want to be here!

Reluctantly, I have put myself on the transplant list. I've had the bone issues, cracked hip, cracked ribs, (those were 1 yr after I started, but another story) and my PTH has been out of control for many years. When I listened to the internet radio interview with Bill and he talked about his reasons for not wanting a transplant at this time, he echoed what I have always felt. Dialysis is a known, transplant is a crap shoot. But now I am convinced? (I think) that the benefit outweighs the risk for me. I've been on the list for a month and plan to be REALLY picky about the kidney I will take. Sometimes it seems that they'll transplant just about anything.

I'm really glad I heard about this forum. The patient population where I am here is VERY different from me. There are only a couple of us that work, most everyone is much older than I am, and they pretty much just stick out their arm, go to sleep and gripe about not being "first" on when they're awake. I'm very in control of my treatment, I don't put my own needles in because I don't think I could do it. I've had carpal tunnel surgery on both hands and have some tendon issues in my right hand that make my fingers unable to bend properly and holding small objects is difficult. I have to hold my stick one at a time now because I can't "feel" through my fingers enough to effectively hold both & just end up with a mess.

I have a "reputation" at my unit but they tolerate me, although several months ago, the DON said to me as I was telling her to roll the gauze rather that fold it, "Marian, why don't;t you dialyse at home?" in a way which said "Please would you dialyse at home!" On the other hand, I have found that my sarcasm & sense of humour "keeps 'em laughing" and we all joke about how "anal" I am. It works, most of the time. My doctor is a friend that I grew up with from kindergarten and that helps. She also owns her own clinic, but she wants me to transplant within the next 4 years, as she plans to sell it and do something else. I've been in the corporate run clinics and don't want to go back.

I've continued to be blessed with the ability to work. I now have a "dream" job working for a mortgage broker from my home. I have stayed away form the bulletins boards and forums on the net for many years now; I didn't want dialysis to become 'my world' and my definition. At the encouragement of my brother-in-law (he has PKD & is new to dialysis) I visited this site and am glad I did. I have felt very alone this past year (I'm sure having to do with my daughter moving out on her own last year). I am active in church and have a social life with friends, but for those of you who live alone like me, you know what I'm talking about.

I think I've spilled my guts enough for an intro. I'm ususally a light hearted person, but the facade is wearing thin these days.

peace...................marian