Wednesday, March 26, 2008

Good News - Bad News!

The bad news first: I could not go to sleep last night. Went to bed around 11:00 PM and finally got up again around 1:30. I finally went back to bed and went to sleep around 3:00 AM. That just happens sometimes.

Now for the good news! Yesterday was pretty rough pain-wise. But after finally going to sleep, I slept soundly until I 'had to' get up, and for the first time, I awoke without immediately thinking, 'I've got to get some pain medicine.' I was not hurting. True it is still swollen, and still sore, and hurting a little now (yes, I'll take something, just had to tell you first!) but it is a WONDERFUL sign. Thank you all for praying.

Luv U All! ~Later!

Tuesday, March 25, 2008

Waiting. . . . .

Right now I'm sitting here waiting for a call back to try and learn what I need to do for pain now that I'm running out of what they prescribed. Switch to tylenol? New prescription? Office visit? What can I do for this swelling? I think with all I've experienced, not being able to use my right hand/arm and constant pain is the worse yet. All prayers gratefully appreciated!

For a frame of reference I did some measuring. Right arm below the elbow is 3 1/8"
larger than the left. Right arm above the elbow is 2 1/4" larger than the left. Mid-forearm is 2 inches larger on the right. Wrist is 2 1/4" larger on the right.

Below is a photo that was used as a pattern for installing my fistula!! Great, huh?

One week after . . . .



This is what it looks like now, one week later. The bruising is gone, but the swelling remains and it still hurts like the dickens! With the first fistula I took one pain pill, that's it. I'm still taking them a week later with this one and am still in much pain. One difference is that this surgeon said he went much deeper to locate a big vein. The first one that was done by another surgeon was not a large vein. That leads me to believe that all of my problems probably stemmed from that fact. When the first one was done, I was suppose to be at the hospital at 11:00 AM and surgery was for 11:30. At 6:00 PM the surgeon happened by the nurses desk (I was right in front of it) and saw his name on my door. "Is that my patient?" "I forgot about her." So what was suppose to be an outpatient surgery turned into an overnight because it was about 9:00 PM when I returned to my room, and they didn't want to dismiss me that late. So the whole thing makes me wonder: It was the end of his day so was he tired? Or maybe had plans? Was he in a hurry? Did he take the first vein he came to? They did a venogram the week before to map out the best veins, which I was told would be in my lower arm. Then he told me after surgery that the best vein was in my upper arm. All the incisions were in the upper arm. I'm not saying he lied. I'm just saying it makes me wonder, and how are we suppose to know all the right answers? Or even the right questions. I guess I'm medically challenged and I just say 'here I am, just do whatever you want to do to me.' Actually, I try to trust and believe that they know what they're doing. And I should know better than that. I think every surgery patient should have a personal liason to walk them through it and be there to ask the right questions for the patient. Handing out pages and pages of consent forms and lots of gobble-de-gook should NOT be used as a catch all for the hospital that the patient has been informed and understands everything, and are taking their own chances. All it does is cancels their liability.

This is a picture of my first fistula with some impressive stitchwork.

Wednesday, March 19, 2008

The Day After . . . . . . .



Okay, here's the good, the bad, and the ugly. Not a pretty picture, I know, but I tell it like it "is". Got to Saint Thomas on time, got checked in pretty easily as we pre-registered before we left last week. The surgery went fine - as far as I know. I was asleep, so what could I know? I'm always amazed when I wake up in recovery to know that it has been erased from my memory. They gave me a pretty strong pain reliever on an empty stomach and that was quite interesting. I was awake and asleep at the same time. Now, don't try to convince me that isn't possible for I lived it! I won't try to explain it, just trust me.

The arm is pretty swollen and bruised, and sore. Each day will bring improvement I'm sure. It was rough getting up and going to dialysis, but I didn't take anything with me except my earphones for the TV, and tried to sleep. I didn't get too far with that. My feet were cramping before my time was up. Then I found out that they had put me on for 30 extra minutes. Kids, this is why it's important to learn your math, okay?!! 180 minutes is 3 hours, not 3 hours and a half! This has happened several times. I'm gonna have to start checking what they put me on for.. I sat there with cramping feet for 30 minutes that was totally unnecessary. Whine, whine!
~Later

Monday, March 17, 2008

Monday, Mar. 17, 2008

Since I have been using the perma-cath for dialysis, I've start cramping an hour before time to come off. They do what they can, cut me back in the amount of fluid they are pulling off, and usually have to just quit pulling, occasionally give me some back. But, so far, it hasn't helped. I'm either going to have to change my dry weight, or quit drinking so much fluid and watch the eating of salty foods. Cramping in my feet, ankles, sometimes my hand, and sometimes the calf of my leg is the pits. Guess I need to get serious here.

I've got to be at Saint Thomas at 6:00 AM in the morning for surgery. I hope I get out just in time to be somewhat rested and "drugged" enough to be able to go to a meeting in Columbia for the Kidney Walk to get my information. I've got a project that I need to work on tonight for a display at the center. I know they would not feel bad toward me if I have to give it back without doing it, but it will sure make 'me' feel bad about it.

Hope you are having a good day! ~Later

Sunday, March 16, 2008





I found the following information on the web and found it quite interesting. I've asked the doctor if there was anything I could have done to prevent the access from clotting. They said 'no'. I hope to talk to the new vascular surgeon about this and hopefully get some answers. Also, I have this nagging dissatisfaction with the information I've been given about the old access. They do nothing about the clots that have caused this blockage. They say they can't go anywhere or be a problem. That doesn't make sense to me. I will keep searching for answers.

What is access clotting?

Answer: “Clotting” of the dialysis access is a common problem for the hemodialysis patient. Also known as thrombosis, clotting is actually the conversion of the liquid blood into a solid plug in the dialysis access. This plug stops the blood from moving freely through the access. Although clotting of blood when it is outside the body is normal and protects us from excessive bleeding when we are injured, clotting of blood inside a blood vessel is abnormal and is usually the result of sluggish blood flow through the vessel. There are a number of things that can cause sluggish access blood flow including poor blood flow into the access, narrowing in the outflow of the access, compression of the access and blood pressure drops.
Poor flow into the access is sometimes a technical problem with the original connection of the artery to the vein (on a fistula) or of the artery to the graft material (on an AV graft) at the time of surgery. Sometimes the blood flow into the access is poor because of diseased arteries due to diabetes, high blood pressure, older age or history of smoking. Narrowing of the outflow of the access occurs when scar tissue forms at the connection of the graft material and the vein. Sometimes the narrowing may already be present in the deeper veins at the time of the surgical placement of the dialysis access, especially if a patient previously had a dialysis catheter in the deeper vein, such as a subclavian vein.
Compression of the access may be accidental if, for example, a patient sleeps on the arm with the access or the patient is under anesthesia for a surgical procedure and the arm with the access is not positioned properly or if a blood pressure is taken in the dialysis access arm. Compression of the access may be intentional in an effort to stop prolonged bleeding from the access site after the needles are withdrawn following a dialysis procedure. In that setting, care must be taken to avoid excessive or prolonged pressure, especially if a mechanical compression device is used. Blood pressure drops occur when too much fluid is removed during dialysis. This may happen if a person gains muscle or fat weight and needs a dry weight increase. These blood pressure drops may also occur when a large volume of fluid is removed at a single dialysis treatment. If the blood pressure falls while the patient is still on dialysis, lying back helps to preserve flow through the access and administration of fluid will help raise blood pressure back to normal. Sometimes, patients experience blood pressure drops after the dialysis treatment is finished and they have already gone home. If this occurs, the patient should also lie back to help preserve flow through the access and take fluids by mouth to help raise the blood pressure to normal.
There are several things that a patient can do to help prevent clotting of the dialysis access. First, patients should attend all dialysis treatments and undergo routine monitoring of the blood flow through the dialysis access. If the flow decreases, a test should be performed to determine the cause of the problem. Problems with the inflow to the fistula or graft can be referred to the surgeon for surgical repair. Problems with the outflow of the access may be able to be corrected in the radiology department with “ballooning” or angioplasty of the narrowed section of the vein.
In addition, patients should be careful of the amount of fluid consumed and weight gained between dialysis treatments. Controlling the dietary salt intake can help to decrease thirst and prevent large fluid gains. Patients should also be aware of blood pressure decreases on dialysis and report them to their nephrologist. The nephrologist may increase the dry weight or re-adjust blood pressure medications to help to prevent future blood pressure drops.
As every hemodialysis patient knows, their vascular access it literally their “lifeline” which must be treated with the utmost care to keep it functioning properly. Clotting of a fistula or graft is usually due to an identifiable reason, and treatment of a clotted access should include, in addition to removing the clot, an investigation and correction of that reason, if possible, so that the access does not soon clot again. Unfortunately, some clotted accesses cannot be fixed, but in such cases the nephrology practitioner, surgeon and patient should try to learn the causes of the clotted access before planning any new access.

Wednesday, March 12, 2008

Well, here we are . . . . . !

I got an appt. for 11:30 Monday. Went to the Vascular Clinic and they de-clogged my access all the way up to the shoulder! It gave him some trouble but he hoped it would work fine. My EKG did a funny little thing, changed rythmes and he wanted me to get it looked at. Said it probably wasn't anyting, and that it might be because I hadn't been dialyzed. It was too late for me to go home and then get dialized, so he called over to Saint Thomas Hospital and got me a place. So I went there to be dialized. While they were trying to get me hooked up, the access was re-clotting! So they did an emergency femoral catheter that is placed into blood vessels in the groin. It is used only when there is no other means of vascular access available and dialysis must be done immediately. Femoral catheters are only placed while the patient is in the hospital, and the catheter is typically only used once or twice at the most. *The patient must remain in bed while the catheter is in place.* (Really? No one told me to stay in bed except when they took it out!) I went walking and everything.



Tuesday morning they took me to surgery and did the subclavian catheter which they called a perma-cath. A subclavian catheter is a means of dialyzing the blood immediately after the catheter has been placed ('installed'). It is placed in the subclavian vein which lies just below the collar bone. It may be used for several weeks until a permanent vascular access is available. Subclavian catheters are covered with a dressing, which is changed with each dialysis treatment. Care must be taken to keep the catheter dressing secure, the ends sealed against the skin and the caps and clamps in place on the catheter. So, at the moment I had three accesses - left arm, right neck, and left femoral access, plus an IV port in my right arm. I told the nurse to not let them know that my right leg was free, or they would be in there wanting to stick needles in it! Tuesday afternoon they took me to have an ultra sound run on both arms. One, to see if the original fistula could still be used and if not, what were the prospects from the right arm. Tues. Mar. 18 I have to be at Saint Thomas Hospital at 6:00 AM to have a fistula installed in my right arm! I'm really disappointed because a fistula is suppose to be the cadillac of accesses. It's unusual for it to last less than two years, actually less than a year of use. If they are going to give out this fast it seems I will quickly run out of options.

Boy! Have things changed since I was last in a hospital! First of all, they had room service. You had to order all your meals. Well, I didn't know that. I couldn't eat or drink after midnight Sunday night, de-clotting, and then dialysis, etc. I did get a pack of crackers and water. After I was settled in my room that night I asked about supper. That's when I learned I had to order room service. It was close to closing time but I called and the girl said go ahead and order and she would see what she could do. I waited and waited. Finally the floor nurse brought me some raisin bran and jello. I have to say it was delicious. I was starving. I was surprised by some GOOD company Tues. night: Kathy, Jess and Jennifer and Corey and Emily. The next morning room service called and asked if I would like some breakfast. I said, "I can't eat!" and it was off to surgery. When I got through with the surgery, I slept a lot so I didn't get to eat until late, but I did get a delish pizza!I also got breakfast this morning, but just barely. No lunch , so I skipped supper too. It was time to get out of there. I had to do pre-registering before I left so that took forever and a day sitting in the waiting area. But, all things eventually come to an end and so did this. Goodbye, dear hospital.! I will see you again next week. Rats!

I've used up all my minutes on my cell phone so I've got to get more. We stopped at an all time favorite, Chick-fil-A! Yum! We finally got home around 8:30, my body guard waiting in front of the house. It was SO good to be home in my humble abode with my own personal mess. Ahhhhhh.......life is good!

Monday, March 10, 2008

Appt.

I have an appt. at 11:30 in Nashville to have my access "unclotted", maybe that's de-clotted. Anyway, I'm on my way. Will fill in the details as soon as I'm able.
~Later. ~Ann

Saturday, March 8, 2008

Me again . . . .

I did go to the clinic. My access is clotted. I asked them how to change doctors (vascular, not nephrologist) and they asked if I ever went to Nashville or if I was interested in going to Nashville. There is a vascular lab there. I told them I was very interested. It won't be open til Monday morning though. They will try calling for me Monday morning as soon as it opens at 7:00 and let me know. I'm not going to eat or drink anything until I hear from them. I asked and they said there was no danger of these clots breaking lose or anything before Monday, so I'm okay with it. Pray that I can get in Monday morning and that it will be a good experience, and everything will be taken care of.

~Later

Saturday Catch Up

I did indeed go to the Dr. Thurs. and sat in the waiting room for 2+ hours before I'm taken into the examining room. Told him what had been happening. He feels it with his hand and says there's a good pulse above and below the spot. Said they needed to use the space above the spot. I said that's what they did (duh) when they stuck me for the fourth time! He set me up for a 'test' on Tuesday to see what is going on. (It took the receptionist 15 min. to make the lab understand what kind of test they wanted. The couldn't find the right name on their list.) Pardon me for my attitude, but it just didn't seem to concern him very much. And maybe it doesn't. I'm sure he sees this stuff every day. I'm not an alarmist, but I don't want to play around if something needs to be done. Anyway, I go to dialysis Friday and everything goes well. But, this morning I wake up and feel my arm (you're suppose to check it every day) and I feel no pulse except a small one in the bend of my elbow. If you've ever felt, or even seen for that matter, a dialysis access you know that you can see it pumping a block away. Sooo, it's Saturday, which means trying to get ahold of someone, and a bunch of run-around. I think I will go to the center (it's only about 2 blocks from my house) and let them check it out and they might be able to get something going with the drs. I'm just not sure I want to see the same dr. who did my surgery and I saw Thurs. I'm not real confident with him.
Prayers gratefully accepted. ~Later

Wednesday, March 5, 2008

A Record Breaking Day!



Yep, today we broke all records.............for sticks. I came home with four holes in my arm! There is one place in my arm that would absolutely not give them any blood. I have an appt. with the vascular surgeon tomorrow to see if he can de-clot the vein or some such procedure. I am getting so tired of this and having one mega pity party for myself. Somebody pass the dip. I'm tired. I'm depressed. And I just want to scream...... But I just don't have the energy. Yes, I know all the right things to tell myself, but right now I don't want to put on my big girl pants, so leave me alone, okay?

~Later