Hope you had a nice Easter holiday with friends and or family. Besides dealing with some heavy allergy issues of being sick several days, I too, enjoyed Easter. I cooked a roasted leg of lamb for the first time. We eventually ate about 8:15p. Hey, ya gotta try almost everything at least once, right?! Oh and yes, of course, it was delicious! Ask my brothers and “Mr. Right.”;)
I saw my nephrologist last week and had an overall good report. Except for a couple issues- there seems to always be something outta whack. Darn phosphorus went back up almost 4 points. It went from “perfect” 2.9 to 6.2. I know I did accidentally miss a couple doses of my binders when eating and I have had more icecream lately, maybe even some cheese and starches as well as drinking ice tea. So, I have cut back on those items, Again.
My hemoglobin is 14.9! My goal is to be between 10-12. Not exactly sure what this means… My iron though, did not go up much and the Dr. wasn’t too happy so she ordered another shot of iron. And this is where the fun begins…So my wonderful nurse, we’ll call her CC and don’t ask what that stands for- she goes after my left arm. After making a fist and digging the needle around a few minutes, no luck. In nursing terms they call it: ” blowing out.” It’s not a good when veins do this. So, CC goes for the right arm- again, no luck. She’s starting to lose it and decides to get another nurse and have her try. Nurse 2 comes in- along with nurse 3. I bet I could come up with a good joke- How many nurses does it take to get a needle in Carmen? Nurse 1 stands aside to watch along with nurse 3 giving pointers. Nurse 2 trys the right arm since CC blew out the left arm. She really digs around- I’m squirming because it hurts. Apparently what my lovely veins thrive on doing every time a needle enters is to run and hide. They disappear. This makes it rather challenging for the nurse not to mention very painful for the patient. After 3 tries and 2 nurse, I tell them to stop. No more for the day. So, I had to go back the following Monday to have them try it again. This time, I had drank at least 24-32 oz of H20. CC psyches herself up this time- in fact she commented on how huge my veins were- they were like snakes. She goes for the right arm since she blew the left one last time. Shocking- she still has no luck. Now, she really loses it. Goes gets Nurse 2 again- she decides to try the left arm. Success! Now, this process of receiving iron is about a half hour deal. I have to keep my arm completely still. It’s resting on the arm of a chair while nurse 2″s arm is resting on the table. She has to slowly push the iron in the syringe. CC starts to move the table…she couldn’t believe what she was doing?! She just leaves. Nurse 2 and I start laughing. CC comes back- starts looking for a bandaid as I usually need one after giving blood or getting poked by a needle. She’s asking “where are all the bandaids?” Leaves to get more and I couldn’t help myself saying: “well, you used 3 on me last week.” CC came running back in -” what did you say behind my back?” Nurse 2 told he between laughs. Ya gotta have fun while sitting for a half hour having a needle in you!
Hopefully the iron does go up this next week!
After badgering the nurse coordinator in the Transplant Dept, leaving the same message for the Social Worker and Receptionist; she decides to actually return my call. I had left a message letting them know that I have chosen the coumadin pill for the blood thinner and screw the Dr’s that are in dispute. It’s my body. Taking 2 months to try to agree on this is ridiculous! So, I lived up to my nickname back when I worked at the hotel- “The Hammer” and dropped it on them. I did get the green light to go on coumadin. Now, I just needed to get the prescription from my nephrologist or primary care. I chose my nephrologist because I was seeing her the following week. Well what do you know? She cannot prescribe the blood thinner- it has to come from the hemotologist or my primary care. Why can’t my incompetent nurse coordinator get the proper instructions/information to me? I then decide to go with my PCP because the hemo is not too fond of me taking the pill. PCP of course, has to see me (charge me more money). I see her today- and take a guess? She has NOT received any paperwork from KU Med authorizing the blood thinner. Imagine that! Time to drop the hammer again! My awesome PCP did indeed give me a prescription. So, after waiting an hour and a half to see her to get the physical prescription, I had to have blood drawn as this determines my dosage to take. My veins, boy, they sure have eyes! The first tube of blood filled up no problem; the 2nd one, well, the veins were not liking it and decided to take off. This caused the digging to occur again. You can run, but you can’t hide! They were found, and decided to give up another tube of blood. Whew!
Off to the drugstore to get the coumadin! You know, next time I fill a prescription, I’m just gonna say “put it on my tab.” The Pharmacist was very, very helpful cause they have to ask- “have you taken this before?” This time, I get an entire 8.5 by 11 description of the drug, it’s side effects, warnings, etc… After reading it, I turn to “Mr. Right” and say: “this is some serious stuff.” Of course, I didn’t say stuff. So, here’s a run down of possible symptoms: Pain, swelling, or discomfort; headaches, dizziness, weakness; unusual bruising; nosebleeds; bleeding gums; bleeding from cuts- takes long time to stop; heavier menstrual bleeding, pink or brown urine; red or black stools; coughing up blood; vomiting blood or material that looks like coffee grounds. Oh boy! Why was I anxious to get on this crap?? It gets better- here are some things to avoid: eating large amounts of green leafy vegetables as these contain Vitamin K. Too much can lower effect of coumadin. Avoid cranberry juice &cranberry products; avoid alcohol; any activity or sport that may cause serious injury. That almost eliminates just about everything.
After being on this, I have to have my finger pricked at least every week if not a few times a week to see how thin my blood’s getting. Believe it or not, there is a stupid co-pay fee every time. Unbelievable! After being monitored about a month, and the blood is thinned enough where it should be, I get active on the list again, then I go off the pill a few days prior to transplant.
So, about 12:08 this morning yesterday); I’m doing my last exchange before I go to bed, and couldn’t believe what was coming out of my body! Bright red fluid. It’s the color of Koolaid or Fruit Punch. Seriously. I panic. I call the after hours number to the clinic and aske to have the on call nurse paged. She calls back and says it’s nothing to worry about- it should clear in a day. I may have burst a blood vessel or had a cyst that ruptured. Luckily, I wasn’t doubled over in pain. I thought my hernia might have burst. I do my first exchange in the morning; same exact color, “fruit punch.” My 2nd exchange is normal. My 3rd one is again light red. No so much color of fruit punch; maybe a watered down version. If this doesn’t clear by tomorrow, I have to have a cat scan.
In lighter news, my friend Anna is doing excpetionally well after just 3 weeks post transplant. I’m still a little jealous. I am also very very happy for her.
I am very disappointed that they did not show the transplant for Susan on Desperate Housewives. Granted, she actually did not have one- but the daytime soaps do a pretty good job portraying those hospital stories! I think I may write the show expressing my disappointment.
The local TV newsreporter is discussing my story with the producers- I’m pretty confident it will be aired as she expresses what a compelling story I have. I was hoping for this month since it’s organ donation month. I don’t see that happening- April’s almost over.
So, I was walking around Target recently, and saw a BeBelly. It’s a spandex like, somewhat of a tube top looking item- that goes over your belly for pregnant women to keep their pants up. My jeans love to become unzipped by themselves several times a day since I have a belly due to my hernia. I thought I’d try this out. So far, it’s not working too well.
Well, it’s about time for my last exchange before bed. Let’s hope it’s not fruit punch.
Thanks for your patience in reading this. I’ll try to give weekly updates.
Thank you for the dedicated prayers and ecouraging support!