A good day

We had fun today. Yes, the mall was crowded, but I avoided long lines and didn't even yell at anyone.. yay for me. :)

I really noticed my fibromyalgia pain in my ankles while walking around the mall today. I guess the prednisone isn't helping it like I thought it was. The doc said usually pred doesn't work for fibro anyway, so I guess the relief I had for several weeks was due more to the "remission" I sometimes get, instead of anything else. I may have to break down and go on the anti-depressant for it. I don't want it to debilitate me again, like it did this past spring and summer.

I only bought one Christmas present today. I spent more on me.. I feel guilty now. Ughh! Casey bought her some cute stuff. She's quite the bargain shopper.

I got to spend some "girl time" with my friend Angela, and Casey took her friend Sydney with us.


Casey and her friend Sydney in Macado's.



Caesy LOVES to try on dresses. She is already looking for dresses for the 8th grade dance.. and it's over a year away. I told her that she would change her mind a whole lot over the next year, but she still likes to look...



I hope all of you had a great day!!

Today's appointment at Duke

Mom and I are home from Durham! We were actually out of Duke by 10:15 this morning, but we stopped over at Jason's sister's house on the way home, and then we stopped for lunch.

My staples are out! It feels SO much better. They did put steri strips on, which will stay in place for about 2 weeks. We addressed several issues today. One being my blood pressure. I have been retaining some fluid, and have actually gained 5 lbs over the past 2 days. They said it was normal to do this for about 3 months post-transplant as the new kidney adjusts and takes over all of its functions. They started me back on a diuretic and said I should lose the fluid almost immediately. This will also help my blood pressure. Most likely, I won't have to start a b.p. med. The docs told me to monitor my b.p. and adjust the diuretic accordingly. They don't want me to get dehydrated.

I have been drinking 2 liters of water a day. That is a "generic" amount they tell you to drink post-transplant. Since I am so small, the docs today told me not to force the fluids like I have been. It could be some of the reason I'm retaining so much fluid. They said to just drink when I'm thirsty. It will be a relief not to have to force those 2 liters down.

Another thing we addressed today was the prednisone. It is causing my chronic sinusitis to flare up, so they started weaning my dose TODAY! I took 25 mg today instead of 30. How sweet that is! In 14 days, if everything is ok with my blood work, I can reduce it to 20. This should also help with b.p. and blood sugar issues, and of course my mania and insomnia. I may not notice much difference until I get down to 15 mg, but it's coming sooner than expected.

I have been having some heartburn at night even though I've had the stomach wrap surgery to correct the reflux and I'm on Prilosec twice a day, so they switched my med to Nexium, which I have been on before. Sometimes I just need a change in medication, and things get better.

I didn't get my stent out today. I have an appointment to go back in 2 weeks to see the doc and I'll get it out then. If everything is ok with my blood work today (I should find out later today or tomorrow), then I go back on the 17th.

Overall.. a really great appointment. I was getting so frustrated last night because of the fluid retention, and because my fibromyalgia is started to act up again. My ankles are hurting and I'm walking slower because of it. I'm still getting on the treadmill everyday, which actually helps the fibromyalgia. I'll continue to do that, but if things get worse, I may have to start an anti-depressant, which is thought to help with the pain for some reason.

I hope all of you are having a great day!

UPDATE: Duke called.. labs look great!!

Wednesday update

I got to Duke about 7:45 this morning. My lab appointment and transplant nephrology appointment went pretty quick. I'm not used to that with Duke..haha.

The doctor was amazed at how well I'm doing. The only issue that we really had to address is my blood sugars. Because of the prednisone, the insulin I am taking isn't doing the trick, so they have added another long acting insulin to my nighttime regimine. They will start tapering my prednisone dose on December 10th. By 4 to 6 months, I'll be back down to 5 mg/day, so my facial edema, sleep issues and blood sugar issues will definitely get better.

My blood pressure is great, and I'm not on any b.p. meds now. My hemoglobin is coming up, and my kidney function labs are looking great. I have a ureteral stent that was placed during transplant. I will have to have it removed in about 3 weeks, but they just do it during my regular clinic visit. The stent is a thin hollow tube which is placed inside the ureter to keep it open and allow the connection to your bladder to heal after transplant.

I finish my IV meds today. It will be great getting rid of that. My doc did tell me this morning that I take more meds than any of his patients, but I don't mind the pills as much.

I weighed 103# today!! I can't believe it. My appetite is really good and I am actually enjoying food again. I think my new kidney weighs about 5 lbs though..hahaha. I did ask the nephrologist about my kidney "bulging" out. LOL. He did say that my mom's kidney is huge.. just like the surgeon had said. The good thing about that is that it has a lot of filtering ability because it's so large. It really is a blessing. He said I will notice it for probably 4 to 6 months and then it should settle in and be less noticeable.

I am waiting on the rheumatologist now. My appointment isn't until 2:30, but hopefully they will take me early. I am so ready to go home. He is going to address my fibromyalgia today. The prednisone has made it better, but once I taper back down, the pain will all come back, so we need to find a different med to take care of it. For a lot of fibro patients, it bothers them more in the winter, but for me, the spring and summer are the worst. I tend to think it's because of the air conditioning inside. I have been more of an "inside" girl b/c of health issues lately, and do better when the heat is on than when the air conditioning is. I kind of feel like this is a wasted appointment since I'm not currently having fibro pain, but it takes about 6 months to get in to see this doc, and I'll be hurting again before I can see him again.

That's it for now. I'll update about my rheumatology appt later today. I hope you all are doing well.

UPDATE: I am home now. The rheumatologist said that since I'm on so much prednisone now, and my pain tends to ease in the winter (unlike most people with fibro), that all he wants me to do now is get in a rehab program for exercise. I will start that next week. If I start having the amount of pain I had this past spring and summer, he is going to start me on an anti-depressant. They seem to work for some fibro patients. Also, I don't have to go back to see the kidney doc again for two weeks. I was supposed to go back next week, but since I'm doing so well and they can't remove my staples until the following week, he said to just wait.

When I got home, I had so many cards from people. I am so thankful for all of you. It really touched me. Some people from my church are bringing dinner tonight too, so I don't have to worry about cooking. *Yay*. It was great to see Mom and Casey. I think I held Casey for 5 full minutes. I feel like it's been a month since I've seen her. Here we are with Balin, who was also very happy to see me!

Bronchoscopy and such!

It's been a crazy, busy weekend, so I haven't gotten around to posting about my bronchoscopy/doc appt last Thursday. Since I had to go see the doctor that day in clinic after he did my bronch, I got to Duke early to get my blood work, chest xray and pulmonary function tests (pfts) done. I had just done all of this 3 weeks earlier, and that's when they determined that I needed to be bronched because my numbers on my pfts were very low for me. I was very tired last Thursday, because I had only gotten about 2 hours of sleep and then I had a 2 hour drive to Duke, so I just knew my numbers weren't going to look good. I was wrong!!! Here is the improvement on my lung function in just 3 weeks.....

8/7/08              FEV1     67% (my normal is 75% or higher)                                  FEF25-75%    47% 

 

8/28/08           FEV1     79%                                                                              FEF25-75%    71%

All of the other numbers were higher too, but these are 2 of the most important. If your FEF25-75 is low, then that might be an indication of chronic rejection. My pulmonologist was amazed at these results. He said that he can never figure me out anyway. :)

He went ahead with the bronch even though my numbers were up, so that he could go ahead and "clear" me for kidney transplant. I had no infection or rejection!

We discussed my insomnia... it seems to be one of those problems we are always discussing now. He gave me a new med that didn't work, so I got ANOTHER new med yesterday, and had my first good night's sleep last night, so hopefully this is the one.

My weight is down to 97 again. I was up to 102 at one point, but now I just think that was fluid instead of mass.. unfortunately. I see my nephrologist next week on the 16th to discuss whether or not I want to have dialysis before transplant. I also see the surgeon at Duke on Sept 22nd. She will be the one performing my transplant. I am not sure if a date will be scheduled then or not. If I decide to do dialysis first, then it probably won't be scheduled yet. I'll keep you posted on that.

Other than that, I enjoyed this weekend with Casey so much. We ran around and shopped and played for 2 days (and I probably overdid it) and then we hung out at home (mostly b/c of my pain) for 2 days. I didn't feel like getting online much, plus I like to save my blogging when Casey is sleeping, at her dad's, or in school. I hate taking time away from her.

I was just bragging last week to a friend of mine how my fibromyalgia might be going into remission like it did last year, but this weekend told me... "NOT YET". Unfortunately, I was in a lot of pain all weekend. I will be seeing the rheumatologist in November. 

I have so much to do around the house, but I will definitely be pacing myself the next few days, hoping that the fibro pain starts to lessen. 

Long day... good and bad news!

I saw my lung transplant pulmonologist today at Duke. I was due to see him soon anyway, but my nephrologist thought I should see him this week, since I had some dehydration and fever. He is essentially my primary doctor.

We discussed a lot today. First of all, he thinks that my sinuses are rearing their ugly head again. He seems to think that's the likely source of my fevers. There are 2 things that I can do for that now. I can have surgery of course, which is going to be due again sometime in the future.. I'm just not sure if I want it before kidney transplant. Then there is IV antibiotics. For me, that means being hospitalized to be desensitized, because I am allergic to all antibiotics that treat the bacteria I have in my sinuses. This will most likely be the first route we take. He wants to see how my fevers are in the coming weeks.

We also talked about my anemia. He is going to let my nephrologist take care of that since he is closer to my home, and it will require me to get IV iron once a week. He said with my antibody level already so high, that if the IV iron doesn't work, he won't hesitate to give me a blood transfusion before transplant. He said the transfusion might give you more anti-human antibodies (those antibodies that make me so incompatible with the general population), but it's not going to make that much difference with me since most transplant patients have an antibody level around 5 or 10% and mine is around 90% already.

Speaking of antibody levels... I was told when I got my lung transplant in 2001 that I would never be able to receive a second lung transplant if I ever needed it. This was because of my antibody level which required me to get lobes from my relatives instead of cadaver (stranger) lungs (and the fact that they had used the only 2 relatives I was compatible with out of approx 40). I hadn't really thought about that over the years. I still accepted that to be true. They had tried many rounds of plasmapheresis to try and reduce the antibody level prior to my lung transplant, but that didn't work. Since I seem to be having some chronic rejection (explained below), I thought to ask him about that today. He told me that now they give the drug Rituximab, and it does a great job of lowering antibody level. For those of you who keep up with Tricia's story, you may remember she was on that for her lymphoma, but it didn't treat it like they hoped it would. My doc didn't seem to think that I would get to the point of needing another transplant, but I do at least have that hope now.. that if I needed it, I could get it. It's the first time I've ever had that hope. :)

Ok, about the chronic rejection. I started some last year. I was put on some additional anti-rejection medications to treat it, and my lung function seemed to respond to it and got better. Today, my numbers looked pretty bad. My doc seems to think that its due to my fibromyalgia, fevers, kidney disease and general fatigue more than anything. He says that just about all transplant patients who are almost 7 years post-transplant, like me, will have some chronic rejection. They may never know it, but it's there. You can read here for a simplified description of acute vs. chronic rejection. Because my lung function has dropped, my doctor wants to do a bronchoscopy on me when I return from the beach. It's something that post-transplant patients get plenty of, so it's no big deal. It checks for all kinds of infection and acute rejection and can sometimes detect chronic rejection.

My nausea was a big topic of the day. My doc wants me to discuss with my nephrologist which would be best.. transplant now, or transplant after a few months of dialysis. Studies do show that those kidney transplant recipients who haven't had dialysis, tend to do better than those who have, but those results could solely be based on the fact that MOST people who get dialysis first, are doing so because they have a long wait for transplant, and their kidneys are almost not functioning anymore. My reason for dialysis would simply be to help build my appetite and give me some strength.

There you have it. I know I'm quite long winded lately. Sorry for that, but I hope that explains everything!!

Fibromyalgia?

My rheumotologist hinted that I might have this when I went to see him last year. He ran tests, found nothing, so I started going to an acupuncturist. The pain eventually went away, so I cancelled my next appointment with my rheumotologist. 

The pain came back about 2 months ago. I had an appointment to go see him a few weeks ago, but had to cancel. I called for another appointment and can't get in to see him until November. Over the past several weeks, the pain has become almost debilitating at times... somewhat worse than it was last year.

So.. being the nurse that I am (which I have found to be more dangerous at times than helpful.. LOL), I began doing my own research to see if in fact it could be fibromyalgia. I assumed that fibromyalgia could only be determined by ruling everything else out, but I also found that I pretty much have classic symptoms according to what I've read.

According to Wikipedia, here are some of the symptoms... and I seem to have all of them:

1. Pain.. of course

2. Many tender points or Tactile Allodynia

3. Irritable bowel syndrome (I was diagnosed with this almost 2 years ago)

4. Sleep disturbances

5. Restless Leg Syndrome

I am going to try to get an appointment with a rheumotologist in Charlotte (the other one was at Duke). I am hoping to get in sooner than November. 

I would love to hear from anyone who has fibromyalgia or knows anything about it. I have read about "possible" treatments, but none of them seem that promising.