ENT Visit (Forever-Cough)

OK. Here's the story so far. I had some allergy-related coughing and sneezing back at the end of March. At my nephrologist appointment, the doctor prescribed me a Z-Pak (this was early April). I took that for five days, but it did not really help. Then, I called them a few weeks later, and they prescribed me some Avelox (for ten days). That helped, some, but I still did not stop coughing. So, I called the kidney doctor a third time, and they advised that I go and visit my ENT.

I saw the ENT on Wednesday morning. He took a look down my throat, and he saw that I have a growth on my vocal folds (also called vocal cords). He said that it is probably benign, but that it is causing my vocal cords to not be able to fully come together, which allows air to aspirate and can be a big problem with my cough and allergies. He wants me to come back in the middle of June for surgery to have the growth removed.

This Friday (tomorrow), I will have a CT done on my head to check my sinus cavities. The doctor thinks that I probably have a lot of blockage up there, again. If I do, he wants to go and flush them out, again, like we did back in 2008.

So, I am going to have a head CT on Friday, and then I will check with the doctor next week to find out what they see. I'll let you guys know what I find out later. I'm guessing that I will have to have my sinus cavity washed out again.

So, the doctor said it is probably a benign growth. I have a head CT on Friday. I will have surgery in the middle of June.

Enjoy your weeks!

Nephrologist Update: April 7, 2011

OK - so I'm back again, this weekend, trying to catch up on my blog posting. As you can see, I'm still posting one month in arrears. (I admit, I phrased that last sentence just to use the word "arrears").

I went to see my nephrologist back on April 7 for my normal quarterly appointment. They confirmed that my work-up from January all looked fine. For those who do not remember, I had my annual Glofil appointment back in January. The doctor was concerned that the test results were much lower than they should have been. They had me turn in a 24-hour urine collection just to double-check the results. As it turns out, I am in the upper 70's (I don't recall the exact number). This is a little lower than the 80.2 that I got last year. They did not seem concerned about the lower number. Being in the 70's is probably still pretty good for a post-transplant patient. And, we will see how well I do next January.

Unfortunately, the clinic was having their computer system updated the week that I was there. That means, they were not able to get me my blood work results for that session. I have been feeling pretty good, so I am not concerned about not having results.

My only negative this appointment was a persistent cough. I started coughing about a week before my appointment. The doctor gave me a Z-Pack. I took it for five days, but it didn't seem to do much for me.

If we fast-forward to the present, I am still coughing (May 8). I called the doctor again this week, and I got a 10-day prescription for Avelox. I am also scheduled to see an ENT on May 18. I'm hooping that he will have some kind of suggestion to help. That, or maybe the Avelox will be working by then and I won't need anything. We shall see!

That's all for this week. If I do my job right, then I should post again after the May 18 appointment. That will get me completely up to date. And, I should be better by then (if everything works right).

See you later!

July 8: Post-Transplant Appointment

I last posted to my blog back in July. It is now almost the end of September. The easiest thing to draw from this is that I am a busy person and do not place a top priority on my blog. The thing you may not think, immediately, is that being healthy does not make for as good of posts (in my opinion).

But, as I was at the doctor the last time I posted, I figured I might as well post about that particular appointment today (while I have a few minutes). My last visit to the nephrologist, for my post-transplant follow-up, was a great visit. My creatinine is at 1.0, which is good to see. My other numbers are all still good as well. I am always glad to see good lab reports as a part of my quarterly visits.

If I remember correctly, I was a bit sick the last time I visited the doctor. I had some sort of sinus infection, which led me to have a chest x-ray. The doctor did not see any signs of problems in my lungs, which was good. I got some antibiotics from my family doctor, and they seemed to clear up the infection fairly well.

The biggest problem with being sick, as a post-transplant patient, is that it takes a long time to get better. Even with medication, I was still coughing for weeks. It means that I have to be more careful when I get sick and make sure I talk to the doctors quickly.

In other news, since my Medicare ran out at the beginning of the year, I have been paying full price for my post-transplant medications. For prednisone, this is not really a big deal. For the Myfortic and Prograf, it is quite expensive. I contacted the two pharmaceutical companies that make those medications, knowing that they offer financial assistance. I received forms from both companies, and sent in the receipts for my medications. I got back a payment of $80 for three months of Prograf. I have not seen anything from Myfortic.

So, I think that posting on Sunday morning works well. I have finished my Bible study for the morning, but am still waiting on Hannah to wake up. If I remember, I'll even update again next week about my 3-month cardiology appointment (and answer some reader questions).

Stay tuned!

Cystoscopy and Fan Question

As a qiuck follow-up, I am feeling much better. It has been almost a week since my cystoscopy, and I think I am doing fine. I am back to using the bathroom a normal number of times per day (which is nice). There is little to no pain associated with it, and that's nice, too. I haven't had to take much Tylenol or anything else, so I'm appreciative. I also have not heard back from the urologist, so I am guessing there was nothing wrong with the urine sample that they sent off to the lab.

In other news, I received the following question via Facebook, from an R.K. the other day:

Yes... Sadly I was diagnosed on Monday. Go back in on Wednesday to go over the test results. I have 12 cysts and 6 stones. Went in for back pain. I just happened to be good friend with a urologist and went to see him over my general doctor. Did a full ct scan after the sonogram showed several stones. Says my kidney function is however at 100%. did they do an MRA on you to see if you had an aneurysm? That will be next. I went to B & N to find a cookbook, but the only ones are either vegetarian or diebetes. What does your diet consist of now? I also have had hypertensive blood pressure for years and sleep 15 hours a day. I'm now on lisinipril however, I'm still so exhausted from nothing. How is your body handling the transplant?

I had asked her about her PKD diagnosis, and she gave me that reply. As a response, I told her:

That's never good news. Being diagnosed with a life-long illness can be a big shock.

I was diagnosed when I was in college. I had pain in my lower back that turned out to be a kidney stone. They did a sonogram to make sure the stone was small enough to pass, and they discovered Polycystic Kidneys hiding inside. This was a huge shock to me since no one in my family had ever heard of it.

Do you have a family history of PKD? I was told that it is a dominant genetic disease, and that it is a guarantee that one of your parents has it if you do. They were not sure if my mom or dad was the carrier, but both my sister and I (only two siblings) have been diagnosed.

I don't remember if I had an MRA done. I've had many, many different scans done on my kidneys. They have all shown the same thing. I have a bunch of cysts, and the last time they measured, my right kidney was over 20 cm long.

As far as diet goes, the most important thing to do is to cut down on sodium and caffeine. The biggest danger for kidney disease patients is high blood pressure. So, if you can keep that under control, you are in good shape. As your kidney function declines (and you move through Stage 1, 2, 3, 4, and 5) your diet changes. They recommend less proteins like red meats as they are harder on the kidneys to process.

Your worse diet will be on dialysis. There are SO many things to watch out for it's crazy. But, don't worry about that unless you end up there (hopefully not).

And, after transplant, I'm up to eating anything I want. I have to watch out for fatty foods, since I'm on a steroid, and it's very easy to gain weight. I also still watch my blood pressure (just a smart idea for anyone).

I would suggest finding a good cardiologist and a good nephrologist (in addition to your urologist). The cardiologist can closely monitor your blood pressure and watch out for things like heart problems or cholesterol issues that may develop with your kidney disease. The nephrologist is a kidney expert that can give you your best advice about your kidneys, and get you on regular checks to monitor your progress. It's also important to make sure your doctors are aware of you kidney problems so that they don't prescribe many medications that are cleared through the kidneys (better for the kidneys long term).

Not being a doctor (only ever a patient) I would recommend a Glofil (pronounced "glow feel") test soon. That test gives a very accurate kidney function level. This way, you can have a base reading while you are still young and are at full functionality. Your nephrologist would be able to schedule that. It's about 3 hours long and mainly involves drinking lots of water and tracking a radioactive dye as it passes from your body.

If you're sleeping fifteen hours a day, I'd recommend getting checked for anemia. I had that, for a while, and it really sapped my energy. They have medications to help, but if they find it, I'd suggest iron supplements and more spinach.

Please let me know if you want to ask anything else. I'll be glad to give you any and all information as I have experienced it.

I did ask her for permission before posting her message and my response. She said that it was fine. I just wanted everyone to know that I am still answering questions, and that I still hope my advice or experiences are useful to others.

I also got a new comment on an older post where someone named Heidi enjoyed my explanation of the Glofil test. I'm glad to help!

I'll see you again next week to tell you about my echo stress test. See you later!

After the Cystoscopy

I went to the urologist on Friday afternoon. He wanted to do a cystoscopy to make sure that everything was okay with my bladder. A cystoscopy involves having a camera placed inside the urethra and into the bladder. The doctor looks around in the bladder and checks for any problems.

So, they start by giving you some lidocaine gel (a local pain deadener) into the end of the urethra. They waited a few minutes for the numbing to take full effect. Then, they ran the camera, which is on a long tube, up and into the bladder. It was mildly uncomfortable. In fact, I think that passing kidney stones is much worse. The camera and tube are flexible, and there is saline hooked up to the device, so that the doctor can fill the bladder to get a better look.

The doctor looked around for a few minutes and he did not see any problems. He said that he would send off my urine to a special lab to check for any cancer cells. That was his biggest concern. I have a higher likelihood of developing cancer because of the immunosuppressant medications.

It turns out that everything is okay (as far as they can tell). I don't have any problems, and did not have any more blood in my urine or any particulate. And, the doctors didn't really see any other problems (nor have I had any calls from the nephrologist about issues).

The only down-side has been after the test. Having a camera shoved up inside of you is not really so natural. There has been a little bleeding since the procedure (and it was pretty painful the first 24 hours or so). The blood is all gone now, and most of the pain is gone. The pain has lasted a little longer than I would have preferred. And, I noticed today that I was having to go to the bathroom much more often than I did Saturday or Sunday. I imagine that my bladder is still mad at having something inside it rooting around.

That's about it for today. Thanks to everyone that prayed (I know that helped with my anxiety). And, there may be a post later in the week with a conversation I've been having with someone. If not, you can look forward to my Stress Echo Cardiogram which I am having on Friday.

Enjoy your week. Remember, you can follow me on Twitter if you want a more real-time idea of what I do.

Nathan Finally Does Something (Unlike a Pirate)

Previously, you may have heard me blog something about having actually done something for a vacation. Well, it's true!

I have decided that I much prefer being post-transplant than mid-dialysis. This summer, for the first time since our anniversary, Jenny and I went on an actual vacation. We spent five days (including drive time) visiting a friend of Jenny's that lives just outside of San Antonio. We visited Sea World and the Riverwalk, and had a wonderful time.

As a dialysis patient, setting up a vacation of this length would have been quite a pain. I would have needed to coordinate with my clinic to have my treatments done while I was in San Antonio, and to have my labs and information all transferred down there and then to hope that everything was ready for me when I arrived. I would also not have enjoyed walking around at Sea World all day, as I was anemic while on dialysis.

As a post-transplant patient, things were much different. All I had to do to plan was to bring lots of sun block and remember to pack up enough medication for the whole trip. It's amazing what a working kidney will do for you. I was able to enjoy our trip, walk around all day, and not feel sick the whole time.

In addition, my dad came to visit us here in Texas about a week or so after we returned from San Antonio. It was nice to see him while he was here, and we got a chance to go and visit the Dallas World Aquarium, to which I had not been in several years. He had not been down to see our new house in person, so it was nice to get to visit with him for several days.

And, finally this summer, Jenny and I are going to back Arkansas to visit with my mom. This is not an unusual journey for us since the transplant, but it's always nice. I've enjoyed the fact that we hired a new person at work to do part of my job so that I am able to take vacations.

So, that's a big pile of good news.

And now, I have a special mention that I would like to make for my aunt (who lives in New Mexico). You may recall that she participated in a PKD walk last year and was able to raise a LOT of money to fund research. Well, this year, she is working with the Datil Educators Club to help them raise money. Here is some more information concerning the Datil Educator's Club:

This group gives a scholarship to a sixth grade student at the Datil Elementary School in the amount of (at least) $500. This money is given to the student upon graduation from Quemado High School.

They are also the Agency that supports the USDA Commodities program in Datil. We distribute the Commodities that are available and supplement the boxes by purchasing food from the Roadrunner Food Bank in Albuquerque.

She has set up an account with Goodsearch.com to help earn the Dail Educator's Club some money. Here is the information:

What if Datil Educators Club earned a penny every time you searched the Internet? Or how about if a percentage of every purchase you made online went to support our cause? Well, now it can!

GoodSearch.com is a new Yahoo-powered search engine that donates half its advertising revenue, about a penny per search, to the charities that its users designate. Use it just as you would any search engine, get quality search results from Yahoo, and watch the donations add up!

GoodSearch.com also has a new online shopping mall which donates up to 37 percent of each purchase to your favorite cause! Hundreds of great stores, including Amazon, Target, the Gap, Best Buy, ebay, Macy's and Barnes & Noble have teamed up with GoodShop and every time you place an order, you'll be supporting your favorite cause (the Datil Educators Club, I hope!). You can read more abut GoodSearh in the NY Times, Oprah Magazine, CNN, ABC News and the Wall Street Journal.

Just go to www.goodsearch.com and be sure to enter Datil Educators Club as the charity you want to support. And, be sure to spread the word to all your family & friends!!

Thanks in advance for your support!

So, if you are on the Internet, and need to search for something, you can use goodsearch to help the Datil Educator's club earn some free money.

Thanks for coming by today. See you all next time!

Cold

I'm guessing you read the title of this post prior to actually reading the post itself. If so, you may be wondering how I could be cold, in Dallas, in June. Well, I'm not! In fact, for the most part, it's pretty warm. The problem I'm having is "a cold." That's right, I only managed to go 17 months after my kidney transplant before I managed to get sick.

I woke up the last week of May on a Tuesday with a runny nose and a slightly sore throat. I didn't have fever or any other problems, so I was guessing that one of the many things I'm allergic to (see previous post for details) had attacked me in my sleep (that, or Jenny did). By Friday, I had started coughing and producing some of that lovely yellow phlegm that everyone enjoys so much. At that point, I decided it was not just allergies, so I quit taking Benadryl, started taking Mucinex, and called my family doctor for an appointment. I saw her the next Monday, and she gave me an antibiotic and said to try that for ten days. I kept taking the Mucinex (to get stuff out of my chest) and the antibiotic (to kill anything that might try to live in my lungs) for the ten days. That ended last Wednesday, and I was coughing still. I called the nephrologist on Friday (yesterday) and came in for a chest x-ray. Everything is fine in the x-ray, but he wants me to get some blood work on Monday. He also prescribed a cough syrup with codeine to help me. I started taking that today, Saturday, and I think it helps a little.

Wow, that was a long paragraph. This one will be short, to help balance.

That was much better. Let's see, I also saw my cardiologist this week for my regular six-month check-up. She did an echo cardiogram, and said that my mitral valve prolapse is still moderately severe (no change since last time). She said that since I had no change, I would not need an echo in six months, but that I should still come back at that time to see her again. She said she would only do another echo earlier if I had strange trouble breathing.

She also told me that a friend of mine that I met while on dialysis is currently seeing her for her pre-transplant cardiac workup. As a doctor, she did not actually mention this lady's name, but from her description, I was able to figure out who she was referencing. Apparently, this unnamed patient had mentioned that I had a blog and that I had mentioned my cardiologist on it. So, here I am, mentioning her again. I assured her that I've never said anything bad about her, mostly because I really like her and think she does a great job. In fact, if anyone were to ever ask me for a doctor to go see, I'd recommend her. She's very knowledgeable, and always seems to remember at least one non-medical thing that we talked about at our last appointment.

You might think that this isn't special, but let me give you my perspective on things. I saw the nephrologist at dialysis every week, and he barely had time to say hello before he was at the next patient. There was no conversation, and no feeling that he cared how I was doing. Yet, my cardiologist, who I see only once every six months, is able to remember things that I told her that are not medically-related, in addition to being quite friendly and seems to care about my health.

So, long post - but I'm supposed to keep taking the cough suppressant until Friday. If I am still coughing at that time, I have to call the transplant nephrologist back and get seen again. Hopefully it won't be a problem that long.

And, Jenny tells me to have everyone look at the links on the right-hand side of the page. I put one up, today, that links to my adoption story blog. Read it if you like. Or don't, I can't make you (or stop you).

Have a great weekend!!

May 13, 2008, Transplant Follow-Up

I had my 8-week transplant follow-up on May 13. I went in at 7:40 am again, but I made an effort to drink a LOT more water before the appointment. My creatinine for the day was 1.1 (which is down from 1.2, and that's a good thing). My guess is the 7:40 time is what caused the discrepancy, as I do not feel any different.

All my other lab number look pretty good. My BUN is at 11.0. My magnesium and phosphorus are both a little bit low, but that's not a problem.

The only real complaint that I have is that Medicare is now my primary insurance company. This is a problem because my prescription drug insurance through work does not want to pay as a secondary company. So, I'm going to get stuck with either co-pays from work or with 20% from Medicare. For the Myfortic, I will be paying about $640 a year under my insurance plan. The Prograf will be another $480 per year. And, the Prednisone is probably $2 a year.

The annual cost for Myfortic, according to Medco, is $3,536.40. The plan pays $2,896.40, which is about 81% (meaning I save a little money over getting this through Medicare). The annual cost for Prograf is listed at $12,966.72 (for a year), with my insurance plan paying $12,486.72 (in that year). This is about 96% of the cost of the drugs, meaning I am getting a much better deal on these than I would through Medicare. The two medications combined have me paying about 7% of the cost, which is better than the 20% I'd have to pay through Medicare.

So, I guess I will continue to pay for Medicare for another 18 months, to cover my doctor's visits. It was nice not to pay for those medications in the past, but unfortunately, that's no longer an option. I knew it would be coming, but did not expect it this soon. So, it will be a cost to add in to everything else. Not a problem, just something to think about.

That's it for this post. More later, I think.

Allergy Test Results

I had my allergy test on Tuesday. It was not too bad, though I was very allergic to dust mites. I reacted to them as soon as she put that swab on my back. The allergy test involved me taking off my shirt, and laying on my stomach for 15 minutes. The nurse put a LOT of swabs (86, I think) on my back, and then did a small scratch on them, to expose me to the allergen. After about five minutes, she came in and wiped off the ones I had the greatest reaction to, and then was back about 10 minutes after that to clean me off, write down results, and give me an anti-itch spray.

Here are the results:

• GRASS POLLEN: (see types)
  
• Bermuda - yes
• Fescue - yes
• Brome - yes
• Orchard - yes
• Red Top - yes
• Rye - yes
• June/Blue Grass - yes
• Johnson - yes
• Timothy - yes
• Bahia (Dallis) - yes
• Wheatgrass - yes
• RAGWEED POLLEN: Yes
• POLLEN OF OTHER WEEDS: (see types)
• Careless Weed - yes
• Dock - yes
• Pigweed - yes
• Western Water Hemp - no
• English Plantain - yes
• Firebush (Kochia) - yes
• Sage - yes
• Cocklebur - yes
• Lambs Quarter - yes
• Marsh Elder - yes
• Russian Thistle - yes
• Sorrel - yes
• SPRING TREE POLLEN: (see types)
• Cottonwood - yes
• Ash - yes
• Box Elder/Maple - no
• Hackberry - yes
• Willow - yes
• Mulberry - yes
• Walnut - yes
• Pecan - yes
• Oak - yes
• American Elm - yes
• Sycamore - yes
• Privet (Ligstrum) - yes
• Pine - yes
• Mesquite - yes
• MT. CEDAR POLLEN - yes
• CEDAR ELM POLLEN - yes
• MOLDS - FUNGUS - yes
• HOUSE DUST - yes
• DUST MITES - yes
• FEATHERS-DOWN - yes
• COCKROACH - yes
• CAT DANDER - no
• DOG DANGER - yes
• HAMSTER - yes
• HORSE DANDER - no
• CATTLE - yes
• Other:
• Peanut - yes

So, I disagreed with the doctor about Cats and Peanuts. I told him that cats make me sneeze, just to see them. And, I've never reacted to a peanut. But, that's the way the tests came back.

They suggested reducing my exposure to being outside to help with outdoor allergies. They said to not open doors/windows at home to get "fresh air" as that will let in more allergies.

They told me to continue on the Nasonex and to go back on my Zyrtec (or generic stuff). They also added Astelin nasal spray to my regimen. I'm supposed to mix and match until I find the minimum number of medications that work for me.

So, I expect to hear lots more requests from Jenny to get a cat (which I will continue to deny). I also went to the local health foods store (Sprouts) and bought a new deodorant. It's called "Crystal Stick Deodorant" and contains only "natural mineral salts". You are supposed to get it wet, rub it on, and then dry off the stick. So far, it's working pretty well. I think my arms have healed quite a bit since I started using it. I'll see how I like it after a month or so.

That's about it for today. Good night everyone!

TB Results: Probably No

I called my nephrologist's office yesterday morning. I wanted to know if they had read my x-ray that was taken Wednesday morning. I figured two full business days would be long enough. They called back and told me that the x-rays results had not been filed by the radiologist yet. However, my nephrologist took a look and said that it is unlikely that I have contracted tuberculosis.

So, all is good news on the TB front. In other news, I visited an allergy doctor last Friday, to complain about my runny nose and stopped up ears. He told me my ear was just full of wax (so I had that flushed out on Monday afternoon). He switched my allergy medicine from Zyrtec (well, generic cetrizine) to Nasonex. I've been taking it a few days, and I'm not sure what I think yet. I have a full allergy test scheduled for next week, just to get an idea as to what makes my nose run.

The allergy doctor must work mainly with nasal allergies. When I asked about my allergic reaction to just about every deodorant I've ever tried, he said he'd have to talk to a dermatologist. Oh well, I'll keep trying different things, then.

Hopefully, the allergy test will give me some good information and maybe help me avoid the sniffles on a more regular basis.

That's it for today.

11 Months Later: The Transplanted Kidney Works Great!

Well, it has now been a little over 11 months (not since I last posted, silly) since I had my kidney transplant. I have to say that everything is going great. I went to my regular post-transplant clinic this week and the doctor said that I am doing great.

My creatinine remains at 1.0. My BUN is still 12.0 (which is good). Sodium, potassium, glucose, phosphorus, and all the other chemicals look great, too. The only thing that is "out of normal" is my magnesium, and it has been slightly low ever since the transplant, so I do not think that they are worried about it too much.

I have my one-year Glofil test scheduled in January. If the results are normal, the doctor said that I will only have to go back for a Glofil every January (which is nice). The Glofil is always at least a half-day appointment, so it will be good from a time management standpoint to not have as many of those.

I had a renal sonogram while I was in the office on Tuesday. The doctor wanted to make sure that my old Polycystic Kidney is not in there causing any problems. The technician obviously could not tell me anything that she saw, but she let me look at the kidney and it looked just as gross as ever. She also showed me the new kidney, which was just perfect looking. It had that great kidney shape, and obviously is doing it's job quite well.

In medication news, I am slowly working down my prednisone dosage. I had been on 10 mg for several months, and since I am almost at my one-year anniversary, I asked (last time) to get on a lower dosage. So, the doctor said to drop my dosage one milligram per month. I am on my third week of 8 mg, so I'll be down to 5 mg by the end of February (I think). I have not started noticing any of the side effects, like always having the "munchies", going away yet. Maybe that won't be noticeable until I have been on 5 mg for a while.

I also saw my cardiologist on Tuesday. She wants to get another echo of my heart to make sure the my mitral valve prolapse is not getting any worse. She said that it still sounds good, but she still wants to take a look to make sure. She also increased my dosage of atenolol (for high blood pressure) from 25 mg a day to 50 mg a day. I just started that, so I don't know the full effects yet. She said it is possible that I will become dizzy, so I am watching out.

Work has been extra-super-crazy for the past month or so. The company is doing a giant software upgrade on some of its internal systems, and I have been deeply involved in End User Acceptance Testing. This is taking several hours a day every day, and has not quite come to an end yet. I am hoping that we will be done before Christmas. I really don't want to keep working on this project next year (for 3 or 6 more months). At that rate, it will be time to upgrade again before this upgrade is completed.

Other than that, not much else is going on. I played my violin in a couple of Christmas concerts, and that was fun. It's been cold and rainy in Texas (but not freezing cold, just 40's cold).

I have that echo on my heart scheduled in the next week or two, so I'll let everyone know what's going on then. Until later, have fun, and enjoy your Christmas!

Help End Limit on Drug Coverage for Kidney Transplants!

The PKD Foundation has recently sent me an ACTION ALERT!

Action Alert:
Help End 36-Month Limit on Vital Anti-Rejection Drug Coverage for Kidney Transplant Recipients!

More than 60 percent of PKD patients will develop kidney failure and be forced to rely on dialysis or a transplant to live.

While Medicare covers dialysis indefinitely, in many cases, it will only cover vital immunosuppressive drugs for kidney transplants for 36 months! Once this period ends, transplant patients are forced to find other ways to pay for these expensive medications.

Many cannot afford to continue treatment.

You can help end this 36-month limit and make a true difference in the lives of PKD patients nationwide!

Take part in this Action Alert today!

Learn more about other PKD Foundation efforts, such as the Walk for PKD - this month in cities across the country!

Answering Comment Questions (and more)

Good morning everyone! It has been almost two weeks since my last post. The good news is that there continues to be nothing wrong. I am feeling well, and am enjoying having energy and motivation to do all the work that a new house requires.

I received a comment on a previous blog post:
(http://nmccart.blogspot.com/2007/07/post-transplant-glofil-3.html)

The question comes from Bmaddny on July 25:
Hey, what was your creatinine prior to your transplant?

Well, Bmaddny, I'm glad you asked! That question can be answered in multiple parts. Way back in 2005, while I still had two kidneys that soft-of worked, my creatinine was between 2 and 4.0, depending on the month they were checking. Once my left kidney got infected and removed, my creatinine shot up to 6, and then I think even higher. By the time I was on dialysis, it was not unusual to see a creatinine of 9 or 10. So, depending on when in the past you were looking, I have had a multitude of creatinine levels. The 1.0 that I am getting now, post-transplant, is the best that it has ever been (since it has been tracked). I hope that helps!

(and more)
Well, the title hinted, and here it is! I finally scheduled my bone density scan for Monday, August 6, 2007 (in the afternoon). That way, the doctors will have three weeks to review the results prior to my next appointment. Then, they can tell me if I am doing better or worse than I was on January 25 (when I had my first-ever bone density scan).

Finally, a medication update. I do not recall when the last time I updated everyone was, so here is the current list:

• 9 am: Bactrim (400mg/80mg)
• 9 am: Calcium +D (600 mg)
• 9 am: Cerefolin (PAL/M5) (two)
  
• 9 am: Folic Acid (800mcg)
• 9 am: Myfortic (360mg)
• 9 am: Prednisone (10mg)
• 9 am: Prograf (5mg)

• 9 pm: Atenolol (25mg)
• 9 pm: Calcium +D (600mg)
• 9 pm: Fish Oil (1000mg)
• 9 pm: Lovastatin (20mg)
• 9 pm: Myfortic (360mg)
• 9 pm: Prograf (5mg)
• 9 pm: Zyrtec (10mg)

Have a great week everyone!!

Post-Transplant Glofil #3

Good Morning! (And, if I don't see you, good afternoon, good evening, and good night).

Tuesday, the 17th, was my 6-months Post-Transplant Glofil appointment. As always, if you are unfamiliar with the Glofil test, you can read about it in a previous post here: http://nmccart.blogspot.com/2007/02/upcoming-first-post-transplant-glofil.html

My score this time was 76.3. That is down from the last two scores. On 2/22, I got 86.1 and on 5/14, I got 82.0. I spoke with the nurse at Dallas Transplant Institute this morning, and she said that this is not a problem. Since my creatinine is stable and my urine output is stable, then there are no worries. Speaking of that, they ran labs on Tuesday as well, and my creatinine remains at 1.0 (which is wonderful). The next Glofil comes 9 months after my transplant date, which should be around October 11, 2007.

And ... while we are talking about lab reports ... the only problem the doctor pointed out on my lab report was that my triglycerides are pretty high. The acceptable range is 32.0 to 238.0 mg/dL. On 6/19, my triglycerides were at 175.0. But, yesterday, my triglycerides were up to 281.0. The cardiologist had previously complained that my triglycerides were too high, so now I need to work with the two doctors to get on some medication to get that down. The transplant doctor suggested that I might could take Fish Oil supplements, if the cardiologist will approve. I am going to send my lab reports to the cardiologist to see what dosage of fish oil that they suggest in my case.

The only thing left to schedule for the transplant clinic will be a Bone Density test. It seems that they cannot do the bone density and the Glofil at the same time, due to the Glofil using a radioactive dye that would interfere with the bone density. The bone density test is pretty quick, so I will see if I can get one scheduled for some morning soon (they want it done this month).

So, that's all for today. Maybe I'll find out what the cardiologist wants so I can get my cholesterol down. Have a great day!

Couple of Quick Updates

Hey everyone!

It's been over a week, and it seems I have had nothing to say.

Our church had Vacation Bible School this week, and Jenny and I participated by being "park security." We had the event at a local water park. The only problem was the torrential downpour that occurred on Tuesday and Wednesday, which reduced us to two days of VBS instead of four. But, I think the program was a success overall.

In kidney news, I think all is going well. I am trying to keep myself well-hydrated. I stopped taking Nexium this week, and I do not think there have been any negative side effects. That will save me several dollars a month, so I am glad to be off another medication. I think the next medication I get to cut out is the Bactrim, but I won't know until after my next clinic visit in the middle of July.

Speaking of clinic visits, I still need to schedule another Glofil test. This will be my "six months post-transplant" workup, so it should be a good one. I am going to try and set that for the same day as my clinic, so I don't have to go down to the office twice.

I also need to remember to call my cardiologist next month and see if they have any other options for lowering my triglycerides other than the "tricor" that they wanted to put me on. The nephrologist said no because it could raise creatinine. I guess I'll have to make that call next week, too.

That's about it for today. Nothing much, but I am still doing well, so that's always good news! Enjoy your weekend.

Oops!

Well, it has finally happened. I received my transplant on January 11, 2007. In one week, it will have been five months. Every day, I am supposed to take several medications. Right now, I am taking medicine at 9am and 9pm.

In the mornings, I am now taking: Bactrim, Calcium+D, Myfortic, Nexium, Prednisone, and Prograf. In the evenings, I am taking: Atenolol, Calcium+D, Cerefolin, Folic Acid, Lovastatin, Myfortic, Prograf, and Zyrtec.

Now, we are coming to the oops. Last night (Sunday), it seems that I forgot to take my 9pm medications. Jenny and I were watching a movie, and I remembered to take my blood pressure and temperature like I am supposed. But, it seems that I forgot to actually take my medicine. I didn't notice until this morning when I grabbed my medicine for this morning. So, I didn't quite make it five months of being a perfect transplant recipient.

But, I did take my medicine this morning (just ten minutes ago, in fact). I think that forgetting my medicine once will help me to remember better from now on (or at least for the next five months).

In other news, the wedding I attended this weekend was very nice. My friend was married, and I enjoyed being his best man. I was surprised to hear the minister (also a friend) tell the story of how Josh had offered to donate his kidney to a close friend. He brought up how this showed his friendship and willingness to serve others. The minister mentioned that it was a good quality to see in a potential groom. And, the bride liked it, too! So, even though his kidney was not a match for me, I was glad to hear that it was a good experience for the two of them.

Here is a picture from the wedding. I didn't ask the couple if I could post it, but ... oh well.
In the picture are the minister, the groom, and me (in a tux)!

Enjoy your day -- see you next time.

More on the Dryer Vent

Wow. I never realized that so many people had helpful hints on cleaning out the dryer vent. If I had any idea, I would have been more specific in my problem.

Let me start out with a very simple drawing. Below you can see "sort of" what the house looks like.



As you can see, the GREEN square that I have drawn represents where the dryer is located. Because of the way the house is situated, the dryer is NOT on an outside wall. Therefor, the exhaust vent for the dryer goes straight up and out on to the roof (I would guess around 20 feet high).

My first cleaning exercise was to pop the rain cover off of the roof side of the vent and empty it of all the lint. That single exercise decreased the drying time by half. It still takes a bit longer to dry the clothes than it did at the apartment, so I still have some more cleaning to do. I attempted to put a brush down the vent (from the roof) but was not able to reach very deep. I may have to try to attach the brush to a mop handle or something similar to get a longer stretch of the pipe.

I have made sure that all of the area that I can reach is clean. I've seen some gadgets to clean out the vent that are kind of like a plumber's snake, and I may try that. I may also borrow a leaf blower and try to blast all of the lint out by force. We'll have to see.

---

Now, you didn't think I would post and not mention anything about kidneys, did you? For me, everything seems to be going well. I am feeling healthy, and I think all of my medications are at a good level. I have not been having too many GI issues, now that I have been taking the Myfortic for a few weeks. I think I mentioned on Tuesday that the doctor did not need to see me for the next three weeks, so that is great news.

I had someone ask about my Glofil score (it was slightly lower than my first one). The doctors mentioned that they don't have "established" results for transplant patients. I guess they only have a baseline for people with two original kidneys. But, I was told (if I remember correctly) that a good Glofil score for a kidney transplant patient was anything above 70. So, even though my score went down (a little) it is not a concern, since it is still above the 70 mark. If it goes down again in three months (the next time I have a test) then I will ask the doctor about it.

In other news ... one of the bloggers that I read on a regular basis (thank you RSS) is about to get a kidney transplant! It's always great to hear about someone changing treatment methods (going from dialysis to transplant). You can read her blog here: http://mykidney.com/blog/

That's about it for today. Enjoy your weekend. I know I will. My friend Josh is getting married, and I'm in the wedding. It should be fun!

Clinic Visit from Monday

Hi Everybody! (Hi, Dr. Nick)

I had another follow-up appointment yesterday (I am now seeing the doctors every two weeks, which is nice). They scheduled my 3-month Glofil test on the same day, so I was in the office about three hours or so.

The Glofil test was nice and easy. I think that I must be keeping myself fairly well-hydrated on a regular basis. I did not drink much more than normal during the weekend. When I arrived at my test, I was told to drink 5 glasses (about 200ml each) to start. Then, the second round was 1 glass, and I drank 2 glasses for the third and four rounds. I feel like I was better off than the guy that had to drink 3 to 5 glasses each time. I took the test in the morning, and the lab guy was not available after my doctor's visit, so I probably will not find out my results until the 29th, when I return to the doctor's office for my next clinic visit.

In other news, my creatinine was down 0.9 (from 1.0 last time). It is always good to see my creatinine down, and I am pleased any time it is below 1.0 (which is very good). This means that my new kidney is functioning well after about four months of living in my body.

They drew my cholesterol and everything looked good. I think I will be able to stay on the Lovastatin instead of the Lipitor (saving a bunch of money every month).

I think that the Myfortic is much more gentle on my system than was the Cellcept. I can't tell for sure, since I am taking an antibiotic for some "other" GI issues. I will stay on two Myfortic per day for the next two weeks and see. If I'm doing okay, maybe I'll ask the doctor to raise me to three per day.

I am almost done taking the antibiotics from the GI doctor. I don't know if they are working or not. I guess they will have to do another study to find out. Luckily, I won't have to take any more after Wednesday. I do not like the taste, and I do not think my intestines enjoy them, either.

I think that's it from a health standpoint. We got the carpet and tiles in the new house cleaned by Dalworth, and they did a great job (I was there when they finished up, and it looks very nice). They told us how to seal the grout and how to Scotch-Guard the carpet to help protect both, and we will probably try and do that this week before the furniture arrives. Dalworth also came out (different crew) to clean all of the air vents, ducts, and returns. They even fixed the slight rattle that our air conditioner was having. It seems the compressor was slightly unstable. I am hoping that that lack of dust and dirt will be nice on my allergies for at least a couple of months until our dust fills up the house. Oh, and Dalworth sent me a coupon code which is good for six months, so if you are having some services done, let me know, and I'll forward you the code.

That's about it. My health is wonderful, and the house is nice and clean. I do not plan to do do too much moving, to keep myself safe and healthy. I had some pain in my old kidney after we boxed up some of our stuff, so I am trying to keep my stress levels down.

If I hear from the Dallas Transplant Institute before the 29th, then I will let you know what my Glofil score was. If you remember from last time, my Glofil was 86.1. I am hoping that it will be that good or better this time.

See you later!!

New Medications

Well, it seems that I have to take a couple of new medications. The nurse from my GI doctor called yesterday afternoon to give me the results from my colonoscopy/EGD.

She said that the biopsies did not return any results (which is good). Then she said that the stool samples returned an infection. The doctor prescribed an antibiotic and a pro-biotic to take for the next two weeks. The antibiotic is to be taken every eight hours, and the pro-biotic is to be taken once a day.

So, hopefully, this medication will fix any problems that I have been having. I'm guessing that I will feel healthier, but I have no idea. I'll see in a couple of weeks.

In other news, we had storms here last night that knocked out the electricity. It was out from about 7:30pm - 2:00am. It wasn't a problem, since most of the night we were asleep. Luckily, the power came back on and the alarm clock worked this morning.

Have a great day!

Monday's Clinic Appointment

I went to the clinic yesterday. My appointment was at 10:40, so I left work at 10:00. It seems that Monday is not the best day to go in. I did not get back to work until about 1:00. I think for any future follow-up appointments, I will stick with Tuesday or Thursday. I guess all the new patients go in on Mondays, so they get pretty backed up.

My blood work all looked very good. My creatinine is still at 1.0. My magnesium is up from 1.6 to 1.7. The doctor said my sodium bicarbonate level was up (closer to normal) so the doctor said that I only need to take one tablet per day instead of two.

I also switched from taking two 250mg Cellcept tablets per day to taking two 360mg Myfortic tablets per day. I want to have the higher dosage of protection from the anti-rejection medication. I tried it before, but for only about 4 days (and taking three tablets per day). This time, I am going to go with two tablets per day and try it for two weeks. That should give my body (and digestive system) time to adjust to the new medication and see if I still have problems at the end of that time.

The only other medication change was from Lipitor to Lovastatin for my cholesterol medication. The Lovastatin is available at a significant discount from Wal-Mart, so I am trying to save money. I asked the doctor to schedule a cholesterol test for my next appointment so that I can see if the new medication is working correctly. I will probably have them test it again two weeks later just to make sure.

The other suggestion the doctor made for my GI issues was to stop the Nexium. I told her that I'd like to try the Myfortic first, and if there is no change, then to try stopping the Nexium. Any time I can take less medicine, I am happy. Speaking of which, I think I will stop taking my Lunesta this weekend. I am on 10mg of Prednisone now, and that should be the lowest dosage for at least a year. The doctor said I could stop the Lunesta whenever I felt comfortable, so I think I'll try that this weekend.

The doctor also scheduled me for a second Glofil test for May 14. I know that is a Monday, but since it is a Glofil procedure, I have to be there half the day anyway. So, I will be drinking a ton of water that weekend in preparation.

That weekend is also when we will be closing on our new house! We have all the plans in the works, and just need to sign the paperwork on the 9th to be completed. It is very exciting to be moving into a new house. I just set up the carpet and vent cleaning today, to help get rid of some of the mold and dust in the house. Maybe that will be good for my allergies.

Well, I think that's it for this week. Thanks for all your prayers. Enjoy your week!!