A Hole in the Groin, Warm Goo on the Chest
Posted by CherylynK, Jul 15 2010, 10:58 AM
This past Thursday, I had my angiogram and now I’ve got the black-and-blue groin to prove it. But it’s not a bruise, really, so it doesn’t actually hurt. The upshot of the whole thing is that they indeed did find a blockage—a 90% blockage in a small vessel that branches off from the left anterior descending artery. *Sigh* So they had me do another ECHO cardiogram the next morning and are consulting with the transplant team about what to do next. They could do open-heart surgery, but luckily the surgeon says that probably won’t be necessary—whew! He wants to do a stent, which is what they usually do, but it’s a little complicated because the blockage is right at the confluence of those two arteries. It’s such a teeny area, if you look at a picture of the heart! So I’m hoping to get notified and have an appointment very soon. I’d have to go on Plavix for 6 months, so that will put off the transplant for six months, but I think I will be on the list during that time anyway. When I get off the Plavix, I can than go ahead with the transplant as soon as they have something.
In talking with my nephrologist here, he said this is very typical for this kind of transplant, because it is only done on Type I diabetics and most of us are not kids when we need a transplant and being a Type I virtually always causes some heart problems. He wasn’t surprised or even very worried at all. He expected as much and is treating it as just one of the steps necessary. He’s very encouraging and been involved in a lot of these things and his very upbeat about my case.
It was a strange couple of days in the hospital, though. We got there 2 hours early (after 4 hours on the road!) because I misunderstood the timing. Oh, well. Then we checked in at noon so the angiogram could happen at 2:30. Well, 2:30 came and went, and I finally got in at 5:30! I got out at 6:30 and then had to lay flat for 3 ½ hours to make sure I wasn’t bleeding from the hole in my groin. I finally got discharged at 11:30 at night, had to go back to the hotel, and then be back at 8:00 for the ECHO! But I didn’t get mad or anything. I figure if they are taking that kind of care for whatever surgery before me caused the delay, that’s the kind of care they will give me, so that’s OK. I’m just glad I blocked out two days in Seattle.
It was funny about the ECHO—they had me take off my top, put on a gown and lay on my side. Then they spread some warm goo (it’s an ultrasound), and rubbed my chest with that smooth little handle thing. A-h-h! I fell asleep! It apparently didn’t matter it was a couple of women, but it had been a long day the day before, and face it, it felt nice.
On the way home, we stopped by the apartment that my folks have rented for all of us for the year, that I will have first-dibs on when I’m having my medical things. What a fabulous thing! And it will allow my family to visit me very easily. It’s in the Queen Anne area of Seattle which, as locals know, is a cool area of Seattle. A high School friend of my folks owns it and he had an opening on the ground floor—perfect! And it’s close to UW. We went and took pictures and actually met the woman who lives above us and she was really nice. I hope her seeing us was reassuring. I don’t mind saying, but we are perfect tenants—quiet and neat.
So, except for the delay, which was really disappointing, everything seems to still be going well. And I think I can still get this done within the year I’ve secretly given myself to accomplish my goal.
Vale of Tears…not really, just Paperwork!
Posted by CherylynK, May 25 2010, 11:30 AM
I decided to start working in earnest with our HR department to get things in place in case the worst happens. Not the worst, actually—if that happens, I’m out of the decision. I didn't think I'd have to start thinking of this stuff for about 10 years, but oh, well! But the next to worst would be if I have to go on disability before I plan to retire. The next case would be if I have to retire earlier than I’d planned, because then my benefits each month would not be as much as retirement later—do not get me started on THAT.
Anyway, I sat down with Teri in HR, who’s really great. I really thought our initial meeting would be about a half hour. Big mistake there! We were still at it over an hour later, and what we came up with was more specific questions to ask of specific people. Progress! I asked Teri if I was her first transplant. She said yes, so I told her she needs to journal all of this in case it happens again. Then it will be a piece of cake! She agreed.
Luckily, I never get sick so I have about 3 months or so of sick leave saved up. I think the whole transplant process will fall under sick leave—yay! Then (worst case scenario), if it doesn’t go as well as expected, I can use then my long-term disability, which I have been paying through the nose for for 15 years. I think that lasts until I’m 65 or something. That’s a detail I have to investigate. I also need to look into whether, at some point, I could be forced into early retirement and then all the paper work for early retirement. Also, I have to go on Medicare for three years in the meantime, and I’m not sure how that weaves through all this, except that my regular insurance becomes secondary for that time. I have lots of reading in front of me.
I FINALLY got all my testing done except for the heart stress test I go to Seattle to do next week. I have been amazed at the errors and mistakes in sending the results that have occurred, and I despair for anyone who’s old or infirm or alone or the quiet type in their trying to get anything done. I have had my colonoscopy records sent somewhere—twice—and finally found out they transposed a couple of numbers on the P.O. Box they sent it to. My blood typing—I don’t know where that went but I went down to the lab finally and said to give me a copy and I’ll send it myself. So I don’t know who has that. The same with a lot of my other hospital tests. I had to get after them 2 or 3 times and I finally got those sent to the correct place.
So I am hoping that while I am in Seattle, they will *officially* put me on “The List”. Then I can go to the air ambulance people and sign up. They don’t do that until you are officially on the list.
I went to a local surgeon who will implant a catheter into the abdomen for getting dialysis—ugh! They’ve not done dialysis with me yet, I guess because I’m still doing OK without it, and who wants it unnecessarily? But I have to get prepared for that, too, so he wanted to take a look at my abdomen! Luckily, it’s a pretty pristine abdomen, but I’m sure he sees others that are a mess of lumps and scars and tumors and who know what else. So he looked and declared it fine, and said to just give him a call if I decide to do it and it will take about a half hour for the implant, and about 2 hours observation, then I go home. Not bed but yet another machine to be hooked up to. When this transplant goes through, I am looking forward to the day I am no longer attached to ANYTHING. Theoretically, just some pills and it could take up to a year to get totally settled down, but even that’s ok.
With all of this, last Friday my sister went to the doctor with what she thought was possibly appendicitis, and it turned out to be extensive uterine cancer! My sister, who along with my mother, has never been sick a day in her life, has only been to the hospital when she had kids, had everything “cleaned out” and will probably have chemo as a follow-up. Luckily, she’s been very healthy and athletic her whole life so that is a plus and she looks and feels good just a week later. So we are both in a similar boat. But I was really OK with my role as the “genetic dumping ground” of the family and the one with the medical problems because of the diabetes (although I’m never sick!!) So this has put both of us in a spin—not to mention my mom, who had my brother die 2 years ago, and now both daughters ill (but recovering we assume). My other brother is still fine as far as I know—at least there’s that!
I'm Closing-In on the End of these Tests--I hope!
Posted by CherylynK, Apr 16 2010, 12:33 PM
I’m closing in on getting all those tests in. In fact, the only test I have left is the cardiac stress test, which is more than just a treadmill test, and an angiogram. I’m going to get those done at UW because they know to be extra-careful with my kidneys. I guess the dye that is used can be really hard on them. Speaking of the dye, I asked about doing these tests here at home, and the hospital here said they couldn’t for a while because the dye they use come from South Africa and they are having a shortage. Huh? There is nowhere else ON EARTH that you can get that dye from? I find that hard to believe. But I’m going to UW anyway.
Because the testing process (at least this round) is winding down, now I’m thinking about housing when I’m in Seattle. I have to stay a month to 6 weeks after surgery to adjust medications and make sure I’m OK. We used to have a house in Seattle until 2 years ago, too! Rats! Anyway, UW gave a list of hotels and housing that they have deal with for longer-term stays. They cost from about $1100-$1500 a month (so I’m saving). My folks have remained friends since high school with a Seattle contractor/landlord and he says he may have some vacant property that we can rent for awhile. My mom said they could rent it for 6 months and see if that will cover the month I need to be there and they will use it when they travel back to Seattle—which they do fairly often, since they all grew up there. That was incredibly generous, and would make it easy for my husband and my sister to stay there, too. But we’ll know better as we get closer.
I was calling back to UW about making the heart appointment and the gal I talked with might have let something slip—she said ‘Well you’re on the list so this little wait won’t be a big deal.” Oooh, I didn’t know I was on a list yet. I didn’t grill her because I didin’t want to jinx it but maybe they’ve started the countdown already!
One test I had to get was I needed my blood typed again, just to make sure. Yada-yada, the order hadn’t arrived from the doctor’s office yet, although they had sent it. So I said that I would just pay for it, no problem. They said that they can’t tell me my blood type without a doctor’s order! What!?!?! I asked, “Well what if I just wanted to know, out of curiosity?”, “You’d have to get an order from your doctor.” “Well, what if I don’t have a doctor?” “I don’t know. We aren’t allowed to take your blood, and even if we did, the lab wouldn’t test it. It’s against the rules.” And I thought, what nefarious thing could I possibly do with my bood type? The only reason I know my blood type now is we did an experiment in 8th grade. Otherwise, I wouldn't know. What if I just wanted to know??? It’s just going to get worse. Or I’ll have to join the Army.
The one thing that bugs me about this whole thing is that I asked the school if they could just make an announcement about how important people wanting to donate are, and mentioning that a coworker(me, but anonymous), for instance, is up for one, so it can hit close to hime. HR said no, that’s considered unethical—which I disagree with, even when they told me their criteria. They completely missed the point for what I was trying to say. I wouldn’t be benefiting from it. I wanted to just remind people these things go on. Then, last week they announced a FORMER student, BY NAME, needs a lung transplant so anyone who wants to be a donor on their driver’s license be sure to do it. Apparently, that’s not unethical, but my deal was. Well, I told them that I didn’t appreciate that and they were surprised I was upset. Oh brother. Whatever.
The Letter--More and More Tests!
Posted by CherylynK, Apr 2 2010, 11:11 PM
I got my letter from UW, but it wasn’t as fabulous as I was expecting, I guess. I was expecting something telling me I won! With lots of exclamation points and wishing me well and all that. It was more subdued than that. They said that I needed to do a bunch of tests for them to evaluate me further before making a decision. Trying to look on the bright side, I took that to mean I was still in the running or they wouldn’t be so mean to make me do all that if they had no intention of giving me the transplant.
I had those bunch of tests already at UW and the 5-page blood test results from my kidney doctor. The new list of tests is:
Cardiac Stress w/ Myocardial perfusion imaging
Cardiac ECHO
Coronary Angiogram
Vascular duplex iliac and lower extremity arteries
Abdominal ultrasound
Colonoscopy
Recent PAP smear
Mammogram
Second blood type needed for transplant listing (?)
Results of PPD (tuberculosis, I think)
Hepatitis A and B vaccine
Dental clearance
Whew! Believe it or not, I got most of them done or had recently done tests sent out this week, so we’ll see what they say now. I only have a couple left. I did several in one day, so that goo that they use for ultrsounds, I was covered with that literally from head to toes. My clothes stuck to me when I left and I had to wash everything I was wearing and take a shower when I got home. Yuck! And because I have such a low iron level, I’m getting an iron infusion done once a week for three weeks. But actually it was great. I just sat in a lounger with a warm blanket and an IV, and listened to Rush and Michael Medved all afternoon! It’s funny, at any given moment, if I’m asked how I feel, it’s always “Oh, fine.” And it’s true. I hope it stays that way. So far, I’m just really tired, but I can deal with that—I mean, who isn’t?
The thing that I’m worried more about is that our school is going through budget troubles, and we’ve been told that there may be layoffs. So I am working my rear end off to look as invaluable as I can, at least until I get this surgery done.
My local kidney doctor said that he got letters from everyone at UW who had seen me, and he said the surgeon said I looked great for surgery! Still have to wait on the tests, but, wow, that’s great.
The First Medical Step--w/ Surprises
Posted by CherylynK, Mar 24 2010, 03:04 PM
Well, I had my first BIG meeting with my possible transplant team at the University of Washington. It was really sort of interesting and I went in with a really upbeat attitude, since all this is really my last hope at any kind of life, and I want them to feel disposed to do it for me.
Going to the doctor at UW is like going to the doctor at our airport. Out airport in the Tri-Cities is about the size of the main entrance/first floor of the UW Medical Center—and about as crowded. But given that, it seems well-managed. As suggested, we got there early and had a chest X-ray and an EKG before I had my main kidney team appointment.
I was to meet with a social worker (insurance and psych guy), a dietician, the kidney team coordinator, a nephrologist, and the actual surgeon—a whole day where everyone talks about me! They all had interesting and important things to say. The social worker wanted to make sure I had insurance lined up and that I would most likely want to go on Medicare! There is a little loophole in Medicare for transplants, no matter your age, that if you don’t go on it when you get the transplant, before retirement age, and you get your drugs through whatever plan you have with insurance, when you finally do retire and are required to go on Medicare, it won’t pay a thing for your drugs and your insurance won’t do it then either.???? Who knew that? So, I guess I am essentially forced to go on Medicare for three years (that’s how long this program lasts) to ensure that I get Medicare for my immunity drugs. I cannot believe everyone knows about this, but maybe they do.
The dietician was very nice and had some good ideas and had a cookbook that is actually pretty good given the awful diet. And she said I’m not eating enough, although I’m watching the vitamins and fiber really well but that I need to up the calories a little bit. The first time I’ve heard that! So, my task is to eat scrambled eggs on toast for breakfast on the weekends—yay!
The coordinator had a ton of papers that needed to be signed for all the various releases, power of attorney, DNR releases, etc. She explained that because I am getting a double-transplant (kidney/pancreas), rather than waiting two-three years, the wait is typically 3-6 months! What!?!?! Apparently, because this surgery is only done for Type I diabetics, we are considered sicker and the surgery, to do any good, needs to be done sooner--or something. Anyway, that’s cool! Especially with this Obamacare business. No one breathed a word about any of that because it would be explosive, I’m sure. She also told me of all the other tests I need and records I need to send so that’s going to take some time, but I’m on it.
Then I talked to the nephrologist who went over my numbers and what to expect after the surgery, and he was very nice and knowledgeable, of course. Then I talked to the actual surgeon. I thought he was a hoot, frankly. He reminded me of Dan Akroyd, a wild and crazy guy, in his manner, not his dress! He talked very confidently, sort of loud and lots of gestures but he was funny and answered any questions I had. I thought he was Eastern European, but my husband thought he was South American, or something. I couldn’t catch his name, but I don’t really care, except that I’d like to know. But he really made me feel hopeful about my chances of getting accepted. So this week they are voting and then will send me a letter notifying me if I’ve gotten accepted for a transplant.
Then I got a DPT shot, and something else; I forget, and had about 16 vials of blood drawn, and then we drove home. And Seattle traffic gets worse every year! Every time we had to go out on a road, there was a traffic accident and everybody was jammed up. Arrggh!
All this running around and gathering info and getting tests, and shots and traveling, etc., I wonder how sicker, more infirm and people who are alone do this?