My Anaphylaxis

The very first night that I was administered IV Vancomycin, I got "Redman's Syndrome" about 30 minutes into the infusion. The infusion was stopped for awhile, and I was administered 25 mg IV Benadryl. I did fine with the rest of the dose at a very slow pace, running over 5 hours. The next night, I was pre-medicated with 25 mg of IV Benadryl, and the Vancomycin was set to run over 3 hours. After half of the infusion was given, I developed the symptoms again and was given another 25 mg of IV Benadryl. The rate was slowed, and I was able to finish the dose.

The third night that I received Vancomycin I was also pre-medicated with 25 mg of IV Benadryl. It was set to run over 4 hours per my request. Two hours into the infusion I was extremely nauseated and received IV Compazine. I had just had sinus surgery the day before and had been dealing with nausea ever since. Previously Zofran had been helping but, at this point, I needed something different. About 40 minutes after the IV Compazine was given, I started my anaphylactic reaction.

I had been having a dry mouth for 2 days and a fruity, sweet taste in my mouth. My husband said that my breath had the faint smell of fruit on it. I was tested for ketosis, which was negative. About 20 minutes after the Compazine was given, I complained to my husband about having a metallic taste in my mouth. It also became extremely dry (no amount of water could moisturize my mouth).

About 20 minutes later, I told my husband that I felt dehydrated to the point of passing out. I then told him I was having a reaction. It was a strange feeling that I cannot completely explain. It just scared me so much! I started laying back on the hospital bed, and my husband pulled the code switch in my room. In about 10 to 20 seconds I developed a rash around my neck and thoracic region, front and back, and I had a handful of nurses around my bed.

I had burning and tightening in my chest and stiffness in my legs. My blood pressure spiked to 212/178, and I was in tachycardia. My pulse was about 113 at that point. I then started feeling burning in my throat, sides, and my muscles all over my body were micro-spasming. It was then that I felt my tongue begin to swell. I couldn't communicate very well to the nurses and resident, because my mouth was still extremely dry making it difficult to enunciate words. My neck was so swollen at this point, that it looked like I had two golf balls on both sides of my trachea.

I had a complete feeling of impending doom!

During this time, my nurses had begun administering IV Benadryl and IV epinephrine. I began to feel some relief, and then I would be flooded with symptoms again, which gave them reason to continue this treatment for awhile. After pharmacy brought up Solu-medrol, I was given a bolus and then a drip of it. I was better at this point, but I couldn't relax because of my panic. They decided to give me Ativan to help me relax, which helped tremendously with my symptoms. My daughter was by my side, and did so well, even checking my b.p. regularly and helping out the nurses. She's such a tough girl, and stayed with me the entire night in the hospital so she could watch over me. :)

The Ativan was given about an hour and a half into my reaction. I remained symptom-free for about 2 1/2 more hours, when all of the treatment meds starting getting out of my system. I again started feeling burning and tightness in my chest and swelling of the tongue. I was given more IV Benadryl and another Ativan at this time. That was my very last reaction.

At this point, my allergist is leaning more towards the IV Compazine as being the culprit, but they have listed both Vancomycin and Compazine as an allergy on my allergy list. They will definitely desensitize me to IV Vancomycin if I ever need it again, and I will never be given IV Compazine again.

I wanted to share this with mainly my CF friends in hopes that if you ever feel any symptom "to the extreme", you will call for help immediately and recognize that it isn't normal. I am so thankful that I had my nursing staff on my case in a matter of seconds, and I'm so thankful I wasn't home when this reaction started. I also will carry an Epi-pen with me everywhere I go now. No more taking chances for me. :)

Brain zaps... no fun at all!

I write this, not so that my friends can laugh at me or question me, but I write it to educate others who are coming off of SSRI's. I am brain zapping so bad the past two days that I want to sit in a corner and cry. I have been on Paxil or Celexa many, many times in the past. Starting 10 or 11 years ago before my first transplant. I have easily tapered down and come off of them when the doc and I agree I'm ready. No problems at all!

The last time I came off of them, I had what people call brain zaps. You know... the things that some docs, some nurses, some lay persons call myths. After a couple of days, these zaps went away, and I wasn't bothered with them anymore.

THe VERY first time that I heard of brain zaps was from my husband trying to come off of Zoloft. He described them as a slight electrocution to the head everytime you try to move your head from side to side, and he also described them of the feeling you get in your head when you have a fever where you can't move your head side to side without getting a tingling/zapping/irritating feeling.

WELL, LET'S TALK ABOUT ZAPPING TO THE EXTREME!!!! I am currently weening off of Paxil according to my docs directions. It has gotten so bad that I just (literally) want to crawl under the bed and hide ... maybe for the rest of my life... I'm deciding. UGHHHH! It's SO bad. I cannot turn my head, I cannot talk, I cannot do anything but look straight forth. I feel sorry for those who's sig. others, family hasn't believed them. I'm so bad now, that J and C KNOW not to come around me. LOL. I am going to try to sleep after I finish crying, but I'm praying these things are gone in the morning so that I can have some kind of social life that allows my daughter and hub into my life again. THis is crazy, this is wrong, and to ANY DOCTOR who doesn't believe this happens... we all should record it.. It's NOT a nice picture!!!!

My experience with rATG

I'm writing this blog post for two reasons. One, of course, is to update my friends and family, who are not on facebook, about my health. Two, to put my experience with rATG (Thymoglobulin, rabbit Anti-thymocyte Globulin) "out there in the cyber world" for those looking for other patient experiences with the drug. I found, when researching this myself, that there wasn't a whole lot out there.

As most of you know, my lung transplant pulmonologist believes from my recent drop in lung function and my recent xrays that I'm experiencing chronic rejection of my lungs. This is where scar tissue develops in the small airways of the transplanted lungs as a result of white blood cells (lymphocytes) attacking the area. My lungs are not a part of me, and therefore are being attacked by my own lymphocytes.

rATG is a medication that is used to treat chronic rejection. It kills the body's white blood cells in hopes of stopping the attack on the transplanted organs. So, what are the side effects of rATG? Normal reactions or short-term side effects to rATG are flu-like symptoms, like fever/chills, nausea, headache, drop in blood pressure, and increased risk of bleeding (infection and lymphoma can be long-term side effects, so I have to be sure to report any night sweats that might come weeks or months after taking this).

Well I took the short-term side effects a little too far. Even after being given IV Benadryl, IV Zofran, IV solumedrol and oral Tylenol, I had a full inflammatory response to the medication. Thirty minutes into my first infusion, I had complete and total full-body pain!!! I can honestly say that it was the worst pain I have ever experienced. The medication was stopped, and I was given IV Dilaudid and more IV Benadryl. Because this wasn't considered an allergy to rATG, I was once again started on rATG the next day after being pre-medicated with the usual meds plus IV Dilaudid. Other than some pain and itching, I did fine with the next 3 doses.

As a precaution, I am on IV Ceftazadime (antibiotic), oral Cipro (antibiotic), IV Gangcyclovir (anti-viral), and inhaled (via sinus nebulizer) Colistin (antibiotic), to try and prevent any infection since my immune system is so depressed right now. I will be on these medications for 3 weeks. Thankfully, I was able to go home after my last dose of rATG. The hospital is the worst place to be when you are immunocompromised and at risk of infection.

I will go back to Duke in 4 weeks to see my transplant pulmonologist. We are hoping that my lung function will have improved at that point. If not, my doctor will most likely give me Campath, which is similar to rATG, but much stronger and can wipe your immune system out for up to 12 months. We are hoping it doesn't get to that point. I do know of several other recipients who's lung function responded to the rATG, and I'm hoping I am one of them. :)

So, that's a rundown of my week at Duke. I am so thankful for my wonderful doctors and nurses!!! I have been home now for almost a week. I have slept most of the week away, but am feeling much better! I am definitely staying away from crowds for at least another couple of weeks.

Things to do before tomorrow

Everyone else going into the hospital tries to get too much done the day before also?? Right? Yeah, that's what I thought.

I'm making my list while I enjoy my coffee. :)

1.) Shower and shave! ha!

2.) Finish laundry

3.) Pack clothes/toiletries

4.) Make sure house is clean

5.) Pack up meds, diabetic supplies, nasal irrigation, OTC's

6.) Fill bird feeder

7.) Bathe doggies

8.) Call necessary people

9.) Pack up laptop and accessories

10.) Pack up camera and accessories

11.) Go to Target for snacks and other items

12.) Go to library

14.) Access port-a-cath

13.) Give TONS of love to Casey and the pups!!!


I am hoping they get started tomorrow on the rATG, but have a feeling it will be Tuesday. I am assuming I will have to have a nurse with me the entire first dose to monitor for reactions, so that requires an extra staff person (just like when I get desensitized to an antibiotic). That means scheduling changes, and that usually takes a day.

I forgot to mention in my last post that not only are they seeing changes with my lung function tests, but they are also seeing changes on my xray. They have noticed that my smaller airways are stretched out a bit, which means that air is getting in there and getting trapped and cannot get out. The reason for that is the scar tissue that develops there when you get chronic rejection. They are hoping this med will help that issue also.

Ok, coffee is done and I have to get busy. I'll be facebooking and blogging this week, and I'm sure for those of you on my FB, you will continue to see goofy pics that Jason feels the need to take. You know.. the sign pictures. LOL!!!!

Have a great week everyone, and please keep me and all of my CF friends in your thoughts and prayers. Many are struggling! Thanks!! Love to all!

Bronchoscopy results

I just realized I hadn't posted my bronch results on my blog. They were negative for infection or rejection, which is good, but still doesn't rule out chronic rejection. I continue to have some wheezing with exercise which indicates something going on in my small airways, but other than that, I feel great. My pulmonologist wants me back in 4 weeks to repeat my pulmonary function tests again and see if my numbers have come back up. If not, he is thinking of starting me on a medication called Rituximab, hoping that it would reduce my high antibody count and therefore stabilize any rejection I might have going on. There are many other medications out there to try, so if one doesn't work, we can try another.

I was able to meet one of my CF friends on Monday. We knew each other through the internet, but had never met in person. Her name is Amy, and she had her double lung transplant at Duke 4 months after me. It was so exciting to meet her!!! We hope to meet her hubby Roger soon!

I started my online Photoshop class last week. I haven't learned a whole lot yet, but I know that it is going to be very helpful. I'm hoping to really enhance my photos with it. I know it takes years to master Photoshop though, and my old brain isn't what it used to be. LOL.

Jason and Casey are doing well. Jason is adjusting to first shift with his job! It's nice to have him home for dinner and home at night. Casey gets report cards today. She's pretty sure she has all A's. I'm so proud of her for working so hard. She is thinking now that she might want to work for the FBI instead of becoming a doctor. I don't know about you, but when I was her age, I changed my mind about my future every week or so. I never dreamed at that age that I would ever want to become a nurse. Casey's step-mom has a sister and brother-in-law who work for the FBI, so if she becomes serious about this, she has people who can tell her all about how it is in REAL life, instead of how it's portrayed on TV. :)

I'll leave you with some random photos. I hope all of you are doing well and having a great winter....

Guns and Labs

Duke called about my labs. My kidney function is doing better since lowering the Prograf (anti-rejection med), so they were very pleased about that. My hemoglobin is still pretty low, but that's probably due to the fact that I'm not eating that great because of the nausea. They are switching one of my anti-rejection meds to a different brand that's supposed to be easier on the stomach. I've tried it before, and it didn't help the nausea, but that was when I was in kidney failure, so that could have been the reason. My potassium is still low, but a few days of eating a couple of bananas a day will bring that back up.

Balin is running around like he has nothing wrong with him!! We have stopped all the meds, and he is still acting like he is fine. i guess it wasn't as bad as they said it was. It's so hard to keep him from jumping on things, because he's back to his hyper little self.

We finally made it to the gun range today. Casey's allergies were really bothering her yesterday, so we didn't attempt to go spend hours outside at the range. We went after we picked her up from school today. She is very accurate at shooting and really enjoys it. Here are some pics we took today...










Check this out everyone!! It's a friend of mine, who's a fellow CFer/transplant recipient, who just ran her first 1/2 marathon, AND it was only 8 months and 21 days after her double lung transplant! You will be amazed! What an inspiration you are to all of us Sara!

Results

My kidney transplant coordinator called this morning. The results show Prograf toxicity. This is better news than rejection of course. Prograf is the anti-rejection medication that I have been on since my lung transplant in 2001. They think that it is part of the reason my native kidneys failed in the first place. It's definitely hard on the kidneys! So, now that they see it is affecting my new kidney, they are going to first start by lowering my dose.

Prograf is monitored according to its level in your blood stream. They usually keep my level around 7-9. With a kidney transplant, you can keep it much lower than that, but with lungs, it gets trickier, because they are much more likely to reject than a kidney. Since I did receive relative's organs, and am a little less likely to reject than someone who received organs from a non-relative, my lung transplant pulmonologist has agreed that my Prograf level can be kept at around 5 or 6, but he doesn't want it any lower than that. If for some reason that doesn't help my kidney function, then they will have to think about switching my Prograf to another anti-rejection medication. I see my lung doc next Thursday, so they will do labs then and look at my kidney function and my Prograf level.

For all you Twilighters out there, I'm sure you know the movie comes out at 12:01 tonight. Casey and several of her friends are having a Twilight party tonight (yeah, another one) and going to the store at midnight. We had it pre-ordered from Amazon and it will be here Monday. I didn't go to the theater to see it because of my hearing loss, so I am very eager to see it at home with closed captioning. :)

Jason is feeling better, but still having a lot of dizziness when he stands. He's getting rehydrated though.

Thanks again for ALL of your many thoughts and prayers. You guys are the best!! I hope all of you have a wonderful, sunshiny weekend!!

Biopsy next week

My kidney transplant appointment and possible biopsy have been moved from the 25th to the 18th. I'll most likely see the nephrologist in clinic, and then he will determine whether or not I need to stay in the hospital for the biopsy. My nurse called again today to tell me of the new date and to also tell me to come prepared to stay. I'm assuming that I will wait around in clinic for my labs to come back, and if they haven't improved, they will send me over to the hospital for at least an overnight stay. How long I stay will of course be determined by what the biopsy shows.

During the biopsy, they numb the area over the kidney, and insert a needle, like the one above, through the skin until they reach the kidney. They then take a small piece of the kidney to be sent to pathology for testing. They will test it for infections, rejection, medication toxicity, and probably other things I don't know about. I should know pretty quickly what it shows, but say if it's an infection, we might not know exactly what "bug" we are dealing with for a couple of days. My nurse does expect it to be prograf toxicity or rejection. I'm a tough case because of my lung transplant, and any increase or decrease in anti-rejection meds can affect my lungs, so they will have to work very closely with my lung team before making any changes to my medication.

My nausea is better today, so maybe my body is preparing itself for The Cheesecake Factory tomorrow. ☺

Creeping Creatinine

I'm sorry I've been MIA the past couple of days. I've so missed out on my fellow blogger's lives. It's been a tough couple of days emotionally and physically, but I'm feeling better today. :)

Ok, so I went to the kidney transplant clinic on Wednesday. It seems that my creatinine is slowly creeping upward. I'll be honest, I'm not really sure what this means, other than my kidney isn't functioning as well as it was in December. It has gone from 0.5 to 1.2. I'm also not sure what the docs are going to do about it, if anything. My transplant coordinator called me today to tell me about it, and said that she has yet to talk to a doctor about it. She has several of them paged, but hasn't heard back from them yet. I've done the dangerous thing and read on the internet that a "creeping creatinine" can mean chronic rejection, but I personally don't think that's what is going on, so I'll just wait to hear back from my nurse.

I am also back to having the nausea that I had prior to kidney transplant. I am convinced now that this is due to the anti-rejection med called Cellcept that I'm taking. I believe that the high doses of prednisone (that make you so hungry you would eat the kitchen sink if there were nothing else in site) were masking this nausea. Now that I'm down to a low dose, it has come back. I'm still eating, but find it a struggle. Yesterday, I had to break down and take a phenergan, which always knocks me out. I see my lung transplant pulmonologist in late March. He is the one who would lower the dose of Cellcept if that's possible. I was put on it, because he thought I was having some chronic rejection of my lungs almost 2 years ago. It did bring my lung function back up, so I know it's working. I would hate to stop it, or lower the dose and have my numbers drop again.

On a different note... I finished my photography class. I take the final exam today after I do some much needed reviewing. I finally got my photoshop/Creative Suite 4 activated yesterday and started playing around with it last night. I have a ton of tutorials to watch. I also start my next photography class on the 18th. I'm really starting to love all of this. I just can't get enough!!

Casey is at her dad's this weekend. I'm not really sure what Jason and I are going to be doing except make a trip to the health food store. It is only about 20 minutes away from here, but we just can't seem to make time to go there. I have a whole shopping list, so we can try to stock up this weekend. They have a lot of low sodium, or sodium-free foods that I just can't find anywhere else.

I'll keep you updated on my kidney :), and I hope all of you have a great weekend.

Quick update

Well, my pain is finally getting better. I had a time getting more pain medication. They said they couldn't call in the one I was currently taking, so they called in Tylenol 3 for me. I'm only needing it in the mornings when I first wake up. The right side of my face is still hurting quite a bit in the morning. The left side doesn't hurt at all. The swelling has finally gone away. There is some numbness on parts of my face. I'm assuming it will take awhile to get feeling back. I really hope that my next sinus surgery, whenever that may be, will be endoscopic and through the nose, as opposed to through the gums like this one. It's been a tough week!

Because of the IV steroid they gave me at the time of surgery, I gained 7 lbs of fluid overnight. It took me over a week to get rid of it, but I finally have. I have also gone down to 7.5 mg of prednisone, and will go down to my maintenance dose of 5 mg on Friday. A lot of my side effects are gone now, but I still find myself a little less patient than I am on the lowest dose. I am definitely sleeping better though. They say your body normally produces an amount that is equivalent to 5 to 7.5mg, so if you are taking anything over that, you are going to have side effects.

Casey is homework-free tonight. She's been working on a very big math project for the past 3 weekends, and turned it in today. Jason isn't working tonight, so we are going to enjoy our family time together!

A day of..... nothing!

Sooo... I guess I'll be on the computer all day, or watching tv, or walking the halls, because they can't do my desensitization today. :( It requires an extra staff member, because an RN has to sit with me through the entire procedure in case I have an allergic reaction, and they are short staffed today. They assure me that I will be desensitized tomorrow though, which means I'll be going home Thursday instead of tomorrow.



So I guess Jason and I will hang here for the day and maybe go out to dinner somewhere tonight. They are pretty cool about letting me off the floor for awhile if I have nothing going on.. and I don't. They have already done blood cultures, but ENT hasn't been in yet to get cultures of my sinuses. That will happen sometime today. I have a student nurse working with me today. Having been a student nurse myself, I think I'm a little more sympathetic to them than most patients. She's really good, and on top of things.. which I like. I also met one of the new transplant pulmonologists today. He seems to be on the same page as Dr. P., my regular pulmonologist, so thats' good.

I'll update more from this exciting place later. Right now, I have a cheese danish (and lots of insulin) to devour. :)

Party Room!!

We arrived at Duke about 6:00 and I was in my room by 7:00. We actually got one of the "party rooms" that has a sofa, frig, table and chairs, and tons more room than the other rooms. I have been coming to Duke for 8 years now and have only gotten a party room 3 or 4 times. Anyway, it's really for those who have a lot of guests, and well... I won't be having any (other than my hubby), but it's still nice to have extra room.

As I've blogged before, I have been having night sweats for several weeks now. They have gotten so bad now, that I have to change my clothes sometimes twice in a night and have to move from bed to bed because my sheets are so wet. Because of that, and because the Cipro doesn't seem to be taking care of my sinusitis, they have brought me in for some IV antibiotics. I was supposed to come in last Thursday, but they had no beds on the floor I need to be on, so they said to wait until today. Nurses on this floor are trained to do desensitizations, because this floor (the pulmonary floor) is also a step-down unit.

The last time I had night sweats this bad was when I had a mycobacterium in my lungs. They do not think that I have any mycobacteriums in my lungs, but they are going to do a blood culture and a sinus culture to make sure there isn't one in either of those places. These sweats could be coming from the pseudomonas that they know is in my sinuses already. It's just strange that it has never given me night sweats this bad. My body has changed a lot.. in a lot of different ways.. since kidney transplant, so it's possible this is just something else that has changed.

So... Jason and I are settled in. Casey is at her dad's. It was his birthday today, so it worked out well that she got to go be with him. I talked to her earlier and she was baking her dad a carrot cake. She was whispering on the phone and she said..."Mom, what do you do if you don't have any vegetable oil and the recipe calls for that?" I told her to use olive oil, and she had no idea that one could be substituted for the other. She later called and said it turned out great. :)

Jason is on his playstation.. no, he doesn't go anywhere without it.. haha. I have been going through admission paperwork with the nurse and intern. We have good interns this time around (the nurses have confirmed). When you are in a teaching hospital, you just never know what your gonna get.

They are supposed to come in later tonight and get blood cultures and sinus cultures. Who knows how late I'll be up for that, but that's ok, as long as they can start the desensitization tomorrow. If all goes well, I should be out by Wednesday, and will be on the IV's for a month. I see the ENT next week to discuss surgery options.

Thanks everyone for your thoughts, prayers, comments, phone calls, emails, etc... They mean so much to me!

Girl's long weekend part 1

Casey doesn't have to go back to school until next Thursday. I am so excited! We started our girl's weekend when I picked her up from school today. We went to my friend Angela's house first to see some of the new things she bought for her house. She just got hardwood floors and decided to redecorate her great room. It looks so good!

We then went to Ulta and Casey bought a few things with a gift card that she got for Christmas. I bought some Nioxin products that Sara recommended. They still had the buy 2, get 2 sale going on (it ends tomorrow for any of you interested). I really hope this product works on my thinning hair.



Casey and I then met some good friends of ours and Jason for dinner at this great authentic Italian restaurant. My friend's mom passed away this week, so we thought that she and her daughter might want to get out tonight. It was great fun.. like it always is with them.

After we got home, Casey and I both worked out on the treadmill, and then watched Psych, one of our favorite shows!

Tomorrow, I think we may hang out at home and work on organizing her room. We are meeting my parents and sister for dinner. We have a few things planned the days after that. I'll try to get some pictures of our "girl time".

PS... I talked to my kidney transplant coordinator today. She wants me to start taking 10 mg of prednisone tomorrow and I can go to my maintenance dose of 5 mg in 6 weeks. That's February 27th. I'm so thrilled about that!!!! She also said my potassium is low, so I have to eat bananas and potatoes and other potassium rich foods to see if that will bring it up. If not, I'll have to start potassium supplements. She said they were happy with all other labs. :)

Duke appointment

I saw my transplant pulmonologist (lung transplant doc) today at Duke. It's the first time I've seen him since before my kidney transplant. My lung function studies were a little lower than they were last time, and he is thinking it's because of my sinuses. For post-lung transplant patients who have chronic pseudomonas in their sinuses, it is crucial that we keep it from draining to our lungs. Obviously, if your sinuses are draining, you can't help but get some of that gunk in your lungs, but they want us to do the best we can at keeping it from flaring up and draining. We do this several different ways... irrigating the sinuses, using sinus nebulizers, going on antibiotics when you have a flare-up, and/or having sinus surgery. I have been taking oral Cipro, an antibiotic used to treat pseudomonas for a week now. I see some difference, but my doc isn't convinced it's going to do the trick. My ENT and pulmonologist discussed me having another sinus surgery last year, but chose to get me through kidney transplant first. My doc today told me that he is thinking I'm going to need it done soon. My ENT (who I see on Feb 3) doesn't like to do sinus surgeries in the winter time. He prefers to wait until springtime when the humidity level is up. My doc today told me that if he opts to wait that long, I will probably have to go on IV antibiotics before then to take care of this flare-up. The problem with me going on IV antibiotics of course, is that I have to be desensitized to ALL IV antibiotics, since I am allergic to them all. That requires an allergist consult, a hospitalization, and of course the risk that I will have an anaphylactic reaction to it. I am going to stay on the Cipro until I see my ENT, and we will decide the next course of action then. Again, this next sinus surgery will not be an easy one. They will cut up under my upper lip and go into my sinuses that way. It's a very painful surgery.

My labs looked good today, and so did my chest xray. My doc told me that the EBV test I had done 2 weeks ago showed a low level, but not a level to be concerned about. He also said the "knot" on my arm indicated some kind of trauma/hematoma, so again, nothing to worry about.

Because of my sinuses flaring up, my pulmonologist is all in favor of me lowering my prednisone quickly. I am going to call the nephrologist tomorrow and see about lowering my dose again. He says the quicker I get to 5 mg/day, the better.

Jason is working this weekend, so Casey and I are going to have a "girl's weekend". I'm sure it will involve shopping, movies, and cooking, but not sure what else. :)

Quick Update

I started Cipro yesterday for my sinusitis. I hope it helps. I won't know for a week or so.

I haven't heard back from any of my blood work from last week. I am assuming that's a good thing??? Surely, Duke would have let me know if something was not right.

I go to see my lung transplant pulmonologist next Thursday. It's been 3 months since I've seen him. I need a chest xray and pfts.

I see my kidney transplant nephrologist on the 21st of this month. That's the day my photography class starts too. I will probably miss it, but since it's online, I can just catch up.

I see my ENT on February 3rd.

I am keeping up with my food journaling and my exercise program, but hey.. it's only January 8th, right?

A big happy 1st birthday to Gwyneth. What a miracle you are. I wore brown today to celebrate!

Sinusitis Sunday

A lot of us with CF deal with sinusitis on a daily basis. Some of us pretty much always have a headache. Actually, I'm fortunate to have had only 3 sinus surgeries in the past. I know people in their 20's who have had close to 20!!! I can't complain!

I just went on IV antibiotics in October for my sinusitis. It really helped, like it always does, but they are rearing their ugly head again. My nephrologist says that because I've been on high doses of immunosuppressants and because at the time of transplant, they gave me a medicine that completely wiped out my immune system, my sinuses are flaring up again. I couldn't get an appointment to see my ENT doc until February 3rd, so I am calling my transplant pulmonologist tomorrow to see if he can start me on Cipro, an oral antibiotic that may or may not help. The bacteria in my sinuses is very resistant to medications, so most of the time I have to go on several different antibiotics (usually at least one of these being IV) to work together to fight the infection. We'll see if the Cipro helps.. I really hope it does.

I haven't heard back from my EBV test yet. I think the results are supposed to be back by tomorrow. I'm still very tired, and that of course could be due to my sinuses too. 

We took Jason to a German restaurant last night for his birthday (which is Tuesday). It is about an hour from here, but the closest one that we know of. It was awesome! We all love German food. Tonight we are taking my mom (who's birthday is Wednesday) to dinner. Jason will be 35 and my dear mom will be 60! I can't believe it.. she was just 40... uhhh...yesterday? Where does the time go?

EBV, CMV, and Happy New Year!

I went to Duke today for a follow-up transplant appointment. I'm living off of 2 hours of sleep, so I'll try to make as much sense as possible...

Here were my concerns and what was done about them:

1.) Concern: Insomnia.. what's new, right?  Solution: Prednisone lowered to 15 mg. Hopefully that will help. If not, call and get a prescription for a new sleep med.. again!

2.) Concern: Recent night sweats which require me to change clothes in the middle of the night (the docs always ask that question).  Solution: Blood work for CMV and EBV. CMV is a virus that doesn't really affect a healthy person, but can make someone who's immunosuppressed very sick. I've had it twice since my lung transplant. EBV (the virus that causes mono) and what it can do to someone post-transplant, is explained below.

3.) Concern: A "knot" that has shown up on my arm in the past week.  Solution: Had an xray done to try and see what it is. Also, the EBV blood work will hopefully help rule out Post-Transplant Lymphoproliferative Disease (PTLD), which is a type of cancer that post-transplant patients can get. My docs know that I've been exposed to EBV (Epstein-Barr Virus) before, and that is known to be a cause of this type of lymphoma in some post-transplant patients. The EBV test I had today is to rule out an "acute" infection, which I guess will help them rule out lymphoma. I am to report any other suspicious lesions/knots/lymph nodes to the doc immediately. If the xray doesn't look suspicious, and the EBV test I had today is negative, then they will just watch me to make sure nothing else shows up. Probably nothing to worry about.

4.) Concern: My blood sugars running high after dinner.  Solution: Hopefully coming down to 15 mg of pred will help this. Also, I am upping my nightly dose of Lantus insulin.

5.) Concern: Recent cough and sinus infection.  Solution: See Dr. P., my lung transplant doc on the 15th to rule out lung infection (if things worsen, I'll go see him before this scheduled appt). Also, make an appointment with ENT to have my sinuses looked at and determine when I will need sinus surgery.

6.) Concern: Worsening kidney function lab tests. Solution: This is most likely caused by the recent diuretics I'm taking. Go back to drinking 2 liters of water/day and get blood work again in 2 weeks.

7.) Concern: Swelling. Solution: Continue diuretics. This will most likely get better as the prednisone continues to be tapered.

Overall, it was a good appointment today. The docs are somewhat concerned about the night sweats, but hopefully the blood work, or my pulmonary appointment in 2 weeks will help find a reason for them. The fellow that came to see me today before the attending came in said "OH... it's you! I have been hearing about you. You are kind of like a rock star around here." I thought that was funny. He said that my case was just very unusual, so the docs talk about me a lot.... hmmm!

I will post an update when I hear back from all of the blood work and the xray. I really don't think there is anything to be that concerned about, but I'm glad the docs are looking into all possibilities. 

Happy New Year to all of you!! 2008 was a great year for me with a lot of prayers answered! I am looking so forward to what 2009 brings.

Home from Virginia

It was so great seeing all of my mom's and dad's family. We packed it all in today. First, we had lunch and opened gifts at my grandparent's house, and then we went to my cousin's house on my dad's side of the family and had dinner. Now we are back home and exhausted!!

I'm back to not sleeping well again. My insurance has all of a sudden decided to give me only 20 Ambien a month. They have given me 30 for YEARS. What do they think we are supposed to do the other 10 or so days? Not sleep? I am going to call my doctor tomorrow and see if they can call me in anything else. It's really ridiculous. Even with Ambien, I have a hard time sleeping, and usually don't get over 5 or 6 hours. With all of the expensive medications I am on, I have a hard time understanding why my insurance company has a problem with this one drug.

I am going to take the tree down tomorrow. I have never been one to leave it up until New Years. Other than that, I really don't have plans for the next few days. I think I'm ready for some chillin' time.

More pics to follow as soon as I can get my hands on Casey's camera (she's at her dad's house tonight). I took my camera today, but didn't even get it out of the car.. oops.

Quick Update

My nephrology follow-up appointment went well today. I was in and out of there so quickly. I just can't get over it. When I go to lung transplant clinic, I'm literally there ALL day.

They lowered my prednisone dose to 20 mg/day. In 2 weeks, I'll go down to 15 mg as long as the blood work from today comes back ok. I'm waiting to hear something on that.

They aren't sure what is causing my hair loss. They really seemed unsure about whether the prednisone is doing it or not, but I still think it is. As long as new hair starts replacing the hair that I'm losing, I'm not going to worry about it.

My blood pressure has been running a little high despite the diuretic I'm taking, so they started me on a bp med for that. A few more small concerns were discussed, but most of them are due to the prednisone, and as I taper down my dose, those concerns will go away.

I finished my Christmas shopping today after my appointment. I'm DONE.. yay! Mom and I are at the hotel now just chillin'. I'm exhausted. I only got 3 hours of sleep last night, and I'm not used to a full day like this. Thankfully, there is a restaurant here at the hotel that we will go to tonight so we don't have to go back out.

I have my stent removed at 8:30 in the morning, and then we will head home. I hope all of you are having a wonderful Wednesday!

Hair Loss and Gingerbread Houses

Weird title I know, but that's what this post is about...

First of all, I'm thankful that my Monday turned out great! And thank you for all of your comments. I hope all of you had a good Monday!! After picking Casey up from her short school day, she got her homework done, we had a nice dinner, and then we decorated a gingerbread house. It's something that Casey and I do every year. It's a tradition. I have found that they are putting less and less candy in the kits every year though. Casey crushed up some peppermint and added it to the roof, which was a nice touch. I am so glad she's not too old to do this with her mom yet. :)

Ok, about the hair loss. I'm losing my hair... again! It's a small sacrifice for a new kidney I know, but it's still not something any girl (or any guy with hair for that matter) wants to endure. About 6 months after my lung transplant, I started losing my hair. They told me it was from the Prograf, one of the anti-rejection meds I'm taking. I don't think that's what is causing my hair loss this time. First of all, I've been on Prograf for over 7 years now, so I would assume my body is used to it. So, I'm thinking the cause is either the prednisone (because of my higher dose), or the effects from the anesthesia I had. Either way, it will come back. I'm not sure how much I will wind up losing, but the last time, I lost almost all of my hair over a 6 month period. When the last of it was falling out, the hair that fell out first was being replaced, so I finally just cut it all off "Halle Berry short" (the Halle Berry before hair extensions). I didn't like it that short, but did like it when it was growing out. It's true, your hair does come back a different color and texture. So, we will see how much I lose. I'll ask the doc about it tomorrow.

Speaking of that, Mom and I will leave for Durham early in the morning for a follow-up appointment with my nephrologist. We are going to stay in Durham overnight since I have to be back Thursday morning to see the urologist to remove my stent. I'll take my laptop and update sometime tomorrow evening.

Heidi asked me to pray for Robynn who is battling cancer and was just sent home in hospice care, because they have exhausted all treatment options for her. She is a young mother with 2 children. Please visit her blog and be in prayer for her and her family. What a sad situation. I know God is in control and we must rely on Him for understanding and peace when things like this happens. It's still very hard. Thank you to all of my prayer warrior blog readers!

Our gingerbread house from a couple of years ago. This year's didn't turn out so good...




This is when my hair was growing back out. I can't find any pictures of it shorter. I do however, have a video that I'm going to post soon of me on the Charlotte news and I had really short hair in it. It did come back curlier and darker. I kind of like this style, but longer hair is easier, because you can just stick it in a ponytail. :) Look at my sweet Casey with no front teeth. All she wanted for Christmas that year was... well, you know the song.