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!

Blog-Time Mail Bag

Hey kids, it's time for another edition of Blog-Time Mail Bag. On this week's episode, we have a letter from Christy in Texas. Here's her letter, which was posted as a comment on my previous post:

My name is Christy McNiel. My husband, Gary has PKD and we are in the process of getting him listed on a transplant list. We live in Dallas and his nephrologist is at Baylor. We went to San Antonio to get evaluated for a kidney transplant because Baylor was having issues with our insurance. All is straightened out now and we now need to make an appointment with DTI to get Gary listed there. How was your expeience with Baylor? Who was your pre-transplant doctor, transplant surgeon and post-transplant doctor? Were you listed at more than one hospital? Sorry for all the questions. We are just trying to find out as much information as we can so that we know what steps we need to take next. Gary is not on dialysis yet, and we hope to avoid it , but we probably won't be so lucky. Thanks again!!

Well, Christy, first of all, thanks for writing. It's not too often that people send me mail full of questions. To start out, I'd like to say that it's too bad your husband also has PKD. Of the many things in my life right now, that's not one I'd wish on other people. I'm glad to hear that you got your transplant testing finished. Of course, you will need to do that every 12 months to stay active on the waiting list.

My experiences with Baylor went well, I think. I was listed at Baylor University Medical Center in Dallas as well as at Baylor All Saints in Fort Worth. They told me that I could list at both hospitals because they were in the same hospital network, but different transplant areas. This would get my name on two lists with only one set of paperwork.

As far as doctors go, I was with Dr. Silverstein at Dallas Nephrology prior to my transplant. He saw me from the time I moved to Dallas in 2001 until I started dialysis in 2005. Here, it seems that you get a different "specialist" nephrologist each time your kidney status changes. On dialysis, I had the clinic doctor, and wasn't overly impressed. I'm sure that any other blogs you ever read about clinical hemodialysis will tell you the same thing. I'm pretty sure that everyone considers those doctors as "drive-thru doctors" that are just trying to see all the patients in the clinic in under an hour. After transplant, I've been at Dallas Transplant Institute under the care of Dr. Nesser (and staff). They have two or three doctors and several physician's assistants that help coordinate the care of the patients. All the PA's report under your doctor, which means you get seen faster and more often (as otherwise, the doctor would never have time).

I do not remember who the surgeon was that performed my transplant at Baylor All Saints. Because I did not receive a kidney from a live donor, we did not really have any pre-transplant meetings with the doctors and surgeons. I just got a call at 3am and drove an hour or so to have a new kidney put in. They did a great job, and the hospital in Fort Worth was very nice. They had recently remodeled the transplant floor, and I enjoyed my short stay there.

I would advise being listed at as many hospitals and in as many areas as you are willing to drive to. It seems to me that if you are not going to have a kidney donated by a relative or friend that your best chance is having more chances. I mean, people talk about "the list" but there are really lots of lists, if you break it down.

There's probably a "master list" for each blood type. If you are a 100% match, then they will send the kidney to you (at least, that is how I understood it to work). Otherwise, you will just slowly move up the list in the area for your different matching characteristics. I think that there are six keys that the look at when matching. So, it would be my guess that you'd have a LOT of lists running around, with tons of names all filling a giant database somewhere.

The only advice I have is to follow all of the nephrologist's orders prior to the transplant. The longer your husband can stay healthy, then the less chance there is for him to have to go on dialysis (which is no fun). And, if he ever does go on dialysis, then he needs to be the model patient. Basically, the better you are for your doctors, the more likely you are not to have any flags in your file.

Good luck, Gary and Christy! Feel free to e-mail me at nmccart@gmail.com if you would like to talk more in a less-open forum. I didn't have any contact info in your comment, so I decided to post here, hoping you'd find it!

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In other news, surgery for my sinus and nose is Monday at 8:30 am. Keep praying that all will go well. I'm guessing Jenny will post later to tell you how it went. Thanks!

My first "Annual" Kidney Exam

Good evening everyone!

I had my one-year post-transplant Glofil appointment on Tuesday. My score was 81. For those of you keeping track, I was 86.1 right after the transplant, 82 at the six-month mark. I asked the doctor (physician's assistant), and she said that the "normal" range for a post-transplant patient was between 40 and 60, so I am doing very well.

I received a Glofil-related question on my comments (on the last blog). Here's the question:

Jugie C has left a new comment on your post "You're a Genius":

My grandson (Montgomery, TX -- 10yo) had his 1st GloFil test today (01/15/08). He was born with inadequate kidney function. Can you point us to an explanation of what "normal" is (his was 21.9). My daughter was informed that 70-140 is the adult normal.

Well, Jugie, I asked the nephrologist about your question. She printed me a list from http://www.renal.org/ about Glofil results. For a person with Chronic Kidney Disease, the kidney function is measured (or estimated) with a GFR (Glomerular Filtration Rate). There are five stages but kidney function is normal in Stage 1, and minimally reduced in Stage 2.

Stage 1 is a GFR of 90+: Normal kidney function but urine findings or structural abnormalities or genetic traits point to kidney disease.
Stage 2 is a GFR of 60 - 89: Mildly reduced kidney function, and other findings (as for stage 1) point to kidney disease.
Stage 3 is a GFR of 30 - 59: Moderately reduced kidney disease.
Stage 4 is a GFR of 15 - 29: Severely reduced kidney function.
Stage 5 is a GFR of < 15: Very severe, or endstage kidney failure (sometimes called renal failure)

The nephrologist said that UNOS (the transplant people) require you to score less than 20 in order to qualify for a transplant. She also said that once you fall below 15, they normally recommend dialysis (depending on the patient, but it's <15 for almost everyone).

I also got my lab results back. My creatinine remains at 1.0 (which is good). My cholesterol levels all looked good. My bad (LDL) was at 61 (which is on the low end). My good (HDL) was a little lower than they like (only 36.0). And my triglycerides were at 139, which is excellent. The only recommendation is cardio-vascular exercise to improve my good cholesterol numbers. Aside from that, she was happy. My Phosphorus was a little low this week at 2.5 (with the normal being between 2.6 and 4.4). The doctor said to keep eating the foods that are higher in phosphorus (all the stuff I could not have on dialysis).

From glancing at the second page, my MONOCYTES were a little high at 0.84 (and the normal range is 0.10 - 0.50). The Internet said that monocytes are a second line of defense against infection. I'm guessing they are elevated due to this foreign kidney being in my body. I'll have to watch it on the next lab report and see if it remains a problem. This level has not been elevated in the past.

That's it for this week. I have another appointment on my birthday. I'm going to try and go in early to see if that helps with the congestion at the office. They have been remodeling their office, and are serving patients in a smaller rental building. It's crowded and there is never any parking. I'm hoping that perhaps being the first appointment of the day will give me a chance to get seen quickly and to get a place to park.

Have a great week. I'll try to post again before mid-March!

Answering a Question

Well, my last blog post was on September 13. It seems that I also received an e-mail question that day from one of my faithful few readers. I apologize for it taking me SOO long to get to your question, but I thought I would answer it here for all to enjoy:

Hi Nathan,

I have been on your blog list for a time now. I don't know if you have time to answer a question for me, and if you don't that's okay! I am a 53 year old woman, and I have PKD. It was diagnosed last year after I was having chest pains. They found it in the scan that they did. After that I have had numerous tests, but it boils down to just taking blood pressure medicine for now! My question is about eating protein. My doctor says don't eat too much protein and mostly chicken (OR, rather not much red meat). However, do you know if it just about the quantities going through the kidneys....and that maybe I could eat more if I string it out over time? Yes, I know I can ask my doctor, but I would also like to see what someone else's experience is! I have found your blog very encouraging Nathan. And, I have been praying for you too! You have been through so much with this disease, and I think you are doing so great. And, I like that you are keeping up living your life!

God bless,

Cindy

Well, Cindy, I am glad that you asked. I try to take time to answer all the questions that I receive, and if the sender doesn't say otherwise, then I try to answer it on the blog so that the other readers can benefit from my "wisdom" of sorts.

Like you, my doctors also advised that I cut down on the protein while I was working my way toward kidney failure. I found that your best bet is to eat as little red meat as possible. If you do eat some, then you should string it out over time. You don't want to have steak and eggs for breakfast, a juicy cheeseburger for lunch, and meatloaf for dinner. If you have steak and eggs for breakfast, then don't eat any more red meat that day.

If you really enjoy your red meats, then I would recommend (just me, I am not a doctor) staying to no more than one serving per day. That will give your kidneys less to process, which should, in theory, allow them to function longer.

Thank you for your prayers and for being a faithful reader. I will try to be a bit better about answering questions that I get to my blog posts. In fact, I'll probably do another question this week, if I get some more time to do it.

Oh, wait, in other news, I got my 24-hour urine results last week. It seems that my creatinine clearance is still over 100, which is wonderful. I guess the variance in my Glofil results is just a variance which should not concern me.

Thanks for coming by to read today. Hope it was informative and helpful to anyone wanting to eat more chicken. See you next time.

Question Received Via E-Mail

I got an e-mail on Saturday asking me a question. I will reproduce the e-mail here (minus any personal information) and attempt to provide the best answer that I can.

EMAIL FROM: M.R.
DATE: AUGUST 4, 2007 at 5:42PM

Hi Nathan...

I'm writing in search of some better answers than what we are getting. My good friend is 34, male, and has PKD ( he was diagnosed about 3 years ago). We have yet to find any good help. His urine has been bloody for a week, after not being able to get into a doctor he went to the emergency room at a local hospital. After some testing and a CAT scan they said he has kidney stones and sent him on his way. Still unable to get into a specialist and still bleeding... I'm trying to be supportive and came across your site in my online searching for answers. Any advice or directions you could point me in for more answers/research would be much appreciated. I'm sure you are a busy man, but I thought I'd reach out. Your blog is great I thank you for sharing your experience!

Thank you for you time
----------

Well, I can tell you right off that I have had several kidney stones in my life. The first one was back around 1998 or so, while I was in college. Several of my kidney stones came with blood in my urine, which is never a good thing to see. If the hospital sent him home after seeing kidney stones on a CT scan, then it probably means that the stones are small enough to pass on their own. Now, having said that, the "passing" is not that easy. My first suggestion would be to see if he could get a doctor to prescribe him some pain medication that is a bit stronger than the over-the-counter stuff. I've had kidney stones that lasted anywhere from a day to a week, but usually on the shorter end, once I started feeling the severe pain. I would notice the blood in the urine for several days before having any pain (if it was a kidney stone). If you find that your friend has not passed the stone within a day or two, he should head back to the hospital to complain again, letting them know how long the pain has been going on. If he is not in terrible pain, then the only thing to do is to wait.

As long as his kidney function is still strong, the only other thing to do is to drink a lot of water. That is the only way the kidney stone will get passed. He has to keep drinking water to move the stone out of his system. In fact, I noticed that I usually would have a kidney stone about once a year or 18 months, when I had slowed down on drinking water. It is highly important to stay well hydrated. It is my understanding that keeping well hydrated will help prevent the stones from forming, or will help keep them small enough so that they do not hurt (as badly) when being passed.

And, of course, with Polycystic Kidney Disease, blood in the urine will be a common problem. Does your friend have a regular nephrologist? Is he going to see the nephrologist on a regular basis? That is the only other advice I have. Stay current with his kidney doctor so that they can track the progress of the disease and keep him ready for any problems that may come his way.

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I hope my e-mail was helpful. I just sent that exact text to M.R. earlier today. I hope everyone is having a good week. I had my bone density scan on Monday, and I am still in "Increased Fracture Risk" like I was six months ago. I'll know more when I see the doctor in a couple of weeks. If I get a chance, I'll try to post the results of the test between tomorrow and the next doctor's visit.

Have a great day!

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!!

Friday, November 17, 2006

As promised, I have one more post this week. I wanted to get all of this information out, but I know that the lab reports are always long, so I didn't want anyone to get bored reading and miss something that might be interesting. So, I figured that I would break up my posts and have them be bite-sized chunks.

First off, let's hear about Kala. For the new readers, Kala has volunteered to be tested as a potential kidney donor. She is the third such person to go through the process. As of our last report, she seems healthy enough to donate, and her tests are going well. Recently, she met with the social worker, who said she was an excellent "donor candidate." I believe Kala had her MRI on Monday. The machine is loud and uncomfortable, but she said that the test went well. As of Thursday afternoon, the MRI results were not back, so we are still waiting on that. The transplant committee meets on Friday, December 8. We should know something from them by probably the Monday or Tuesday after that.

All in all, the news from Kala is good to hear. I am glad that all of the tests and interviews are going well and that no problems have been uncovered. I also appreciate her kindness to be willing to donate a kidney to me.

In other news, I have been getting more e-mail recently from other Polycystic Kidney Disease (PKD) sufferers (er er er ers). [<-- trust me, that would be funny if you could hear me say it.] Anyway, I have a few e-mails from other PKD people, and they are all at least interested in what I have been going through. I am SLOWLY trying to get back to everyone, so if you wrote to me, don't feel bad. Your message is in my Inbox, waiting it's turn to be replied to. I have not been feeling well this week. I have had a lack of appetite, as well as some minor nausea since about Monday. Today (which is Friday), I have had a headache most of the afternoon, which is unusual for me. Hopefully, I will get to feeling better soon. It's not any fun to be sick. I have an interesting comment I would like to throw in. There is another blog that I have been reading where the author asked that we pray for healing for someone's cancer. It seems that after the latest scans, most of the tumors have gone away without medical intervention. The author has encouraged prayer towards miraculous healing (in whatever manner that God chooses). This made me think about God's faithfulness. I have been reading about faithfulness, and thought I would share a little from what I have been studying. We have faith based on either who GOD is or on what GOD does. Isaiah 55:8-9 says - 8 "For my thoughts are not your thoughts,
neither are your ways my ways,"
declares the LORD.
9 "As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.

Hebrews 13:8 says -
8 Jesus Christ is the same yesterday and today and forever.

The summary of the lesson was that faith based on who GOD is frees Him completely to show us what He can do!

Please continue to pray for me. Pray for a miracle healing. Pray that the right donor will be found to match for me. Those prayers are not exclusive. Pray that God will choose the method that will bring Him the most glory. I am just here as an instrument. I want to be used in any way possible.

Thanks for reading again today. As always, tune in next time for more fun!

January Comments Review

Well, it is time once again to review all of the comments that I have been receiving. I know that not everyone who reads my blog reads the comments, so I thought that I would review the last several that have been posted, as well as a couple of responses.

Oh, by the way, I posted last night that the doctor was supposed to come by the clinic and schedule a time to remove my chest catheter (since it is no longer needed). The doctor did NOT come by the clinic last night. I hope that means he will be by twice next week, as I pay $80 a week to see the doctor. This also means another week (at least) with the catheter. I did take home the betadine and clean it myself this morning, since the technicians had forgotten or run out of time twice this week. New bandages are always nice.

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At 1:23 PM, Nephronurse said...

Did anyone ever offer you the option of peritoneal dialysis?

At 9:15 AM, Nathan said...

When I had my nephrectomy in June, the doctor said that I would soon be in need of dialysis. However, since I had just had my abdomen torn open (from my sternum to my navel), I was told that PD would not be a good option. Also, since I suffer from Polycystic Kidney disease, most of my peritoneal cavity is filled with my remaining kidney (it's large). Does that answer your question?

At 7:55 PM, Nephronurse said...

Yes, that's what I suspected was the case. I just wondered if it had even been mentioned to you. I have seen a lot of patients that have never been told about it. I have also seen people with PKD do quite well on PD.

(Comments were taken directly, since I answered that question in a comment).

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At 7:05 PM, Danielle said...

Hi Nathan. I found your site quite by accident...then, God makes no mistakes. I will be praying for your health and well-being and will continue checking out your blog. Thank you for sharing your story.

"His glorious power will make you patient and strong enough to endure anything, and you will be truly happy." Col. 1:11

"Live long and prosper." Mr. Spock

Danielle has told me the best thing that I can ever hear. I love to know that someone is praying for my health and recovery. I am thankful to be living in a time when people that I do not know can pray for me, since we both know the same God. And, of course, how can I not like someone who quotes Star Trek!

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At 11:13 PM, Nephronurse said...

Hi, Nathan
I tried to post a comment once already and I am not sure if it went through so I'm trying again. The trials you have had with your fistula inspired me to post about vascular access on my blog. Please let me know if you think it is helpful or not.

I did actually read through Nephronurse’s Blog. She had some interesting insights about vascular access, some of which I will never see, since I only have the one fistula. She encounters many more patients that I do, and has a better opportunity to see problems and solutions. This is one blog that I have added to my regular reading list, and I plan to keep up with her posts.

High Heart Rate on Saturday

Well, dialysis did not go as well as it could have on Saturday night. For some unknown reason, my heart rate shot up at the end of my treatment. At the end of every dialysis treatment, they take your blood pressure while you are standing up to make sure that you aren’t going to pass out on your way home (since taking off all that fluid can really drop your blood pressure). My blood pressure was fine, but my heart rate was sky high. It started out at 157 beats per minute, and kept hovering around that number for about ten minutes. So, they had me sit down, where my heart rate dropped down to around 130 or 140. When I stood up a second time, my heart jumped to about 250 beats per minute (which is just crazy). They watched me for about 30 minutes, waiting on my heart rate to calm down, but it never went below 100 sitting and never got below 130 standing. So, they sent me home and said to go to the hospital if I had any problems over the weekend. I checked my pulse on Sunday, and it was usually around 100 sitting. So, I don’t know if there is anything wrong, but I guess I can ask the doctor on Tuesday when I see him.

I received a question posted in the comments section of my blog. I am going to reprint the question and attempt to answer it.

http://nmccart.blogspot.com/2005/10/new-job-new-insurance.html
COMMENT:
At 5:37 PM, Anonymous said...
Sounds like you are doing well and moving forward. Happy for you. Can you tell me anything that would help me know what I am facing with a double nephrectomy? Thanks

Wow, a double nephrectomy (which means having both of your kidneys removed). I will try and give you my experience with the single nephrectomy and you can probably just multiply everything I say by 2. Your mileage may vary.

For me, I had one kidney that was quickly swelling to fifteen pounds. I was in terrible pain for more than a week, and it took them several days just to decide to remove that kidney. As with all surgeries, I was told not to eat anything before the procedure, not that I was feeling well enough to hold food down. They gave me some nice anesthetics and I had a long nap. I do not recall anything from the procedure itself. All I remember is being rolled down to the preparation area in my gown (with my family in tow) and a slight burning as they injected the medicine. I gave my glasses to my wife, and the next thing I knew, I was in the Critical Care Unit (same as the ICU in other hospitals). I was extremely tired after the surgery, and they had me hooked up to a morphine pump (which I could use to dispense pain medication when I needed it). I stayed in the CCU for about two days. They only allowed visitors to come in for a few minutes every two hours (so that I could get some sleep). There was a lot of pain the first couple of days, but the pain medication really helped with that. I would also advise that you not pull out your NG tube while you are sleeping. The tube is designed to suck everything out of your stomach while you are recovering. And, since it was abdominal surgery, I was not allowed to have anything to eat. The doctor said that they had to wait until I started passing gas (which gets into your abdominal cavity while it is open) before I could eat anything. For me, that took five days. I think it might have been shorter had I not removed my NG tube on the second day after surgery.

I hope that this was a helpful insight into my nephrectomy. Like I said, for a double, it might take a little longer in the operating room (depending on why you are having your kidneys removed). If they are not both swollen to 15 pounds, I bet it goes pretty quickly. And, you recovery time will probably be at least two weeks. I did not feel like getting out of bed before the second day, and did not feel like standing long enough to take a shower until a week had gone by. I think that was the worst part, was that I could not really stand up for very long. And, it was exhausting to do anything that first week. Good luck with your procedure!

Work Goes Well

Just a quick blog update. I went back to work today. My boss is letting me work 7:00am – 4:00 pm so that I can go to my dialysis treatments after work. My first day back was pretty easy, though they didn't having me do too much. I am scheduled to be working with someone for at least the next couple of weeks. That way, if there are any problems with me, they won't have any problems at work. I did not get tired at work, and now that I'm home, I still feel pretty good.

In other news, one of my friends told me that it was hard to comment on the blog because you had to register before you could post. I found the setting so now anyone should be able to post comments without registering. Thanks for the information. Enjoy reading!

Wedding Photo

Here is a picture of Jenny and I at our wedding (July 10, 2004). I attempted to upload this picture earlier with Hello, but it did not work the way I had expected. So, people with the automatic update probably saw a blank e-mail. Everyone else, this is what my beautiful wife looks like.

This picture was posted by request of one of my faithful readers. Enjoy!

Movin' on Up

I received another successful dialysis treatment Tuesday evening. They had a little bit of trouble sticking me, but my arm does not seem any worse for the wear today. They are still having troubles with the arterial side, and I was afraid that they had infiltrated it last night, but it doesn't look that way. I was also finally able to get my dry weight moved up. They are now allowing me to stay at 68 kg (which is up from the original 66 kg in the hospital). This means that I hopefully won't feel dehydrated at dialysis for quite a while. Well, at least until my weight goes up enough that I start to notice again. But, it is good to know that I can talk to the doctors and get my weight adjusted as needed to keep me feeling well. And, since I am eating well once again, despite my restricted diet, I plan to get my weight up to something more normal for my height.

I'm going to try something new this week. Our Adult Bible Fellowship class at church has a service project planned for this Saturday. They have scheduled to go to the Buckner Shoes for Orphan Souls from 2pm – 5 pm. Since my dialysis is supposed to start between 4:00 pm and 5:00 pm, and the Buckner organization is about 45 minutes away from the dialysis clinic, I would not be able to attend this event. But, the dialysis clinic does allow you move your treatment if you are not able to come in at your regularly scheduled time. On Thursday, I am going to ask to have my Saturday treatment done during the early morning shift rather than at my usual evening shift. I talked to the clinic last Saturday and they said that it was possible, but I would have to check back on Thursday. So, I will. This would be a great opportunity to serve God in a tangible way. I am looking forward to going to Buckner to help out.

If you want to find out more about the Buckner program, please visit them on the web at http://www.shoesfororphansouls.org/.

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On an off-topic note, Google released their instant messaging / voice chat program called Google Talk today. This IM program requires that you log in with your GMail user name and password. That makes it kind of difficult for me to use it to chat with anyone as I only know a handful of people that are using GMail. Oh well, as more people find out about it I should get a chance to try out this new technology.

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That's all for today. Please feel free to post comments online or to send me an e-mail. Since I am still off of work this week, I will have lots of time to read and respond to anyone that writes.

Going back to Work Soon

I talked with my boss today, and he said that he is excited about me coming back to work on the 29th (which is just a week from Monday). I call my human resources contact down in Houston, and she said that she would take care of the paperwork for me as long as I remember to send her a copy of the doctor’s note. This is great news, as I have been on disability for nearly 90 days. I don’t know if you’ve ever had to take an extended leave from work, but I know I won’t be complaining about having to work too much any time in the near future.

Several people have asked for e-mail updates when I post to the blog. I am using a feature of GMail that lets me forward certain messages to people. After I post today, I’ll know just how well this feature works. Comments are always welcome!

August 12

I had another successful dialysis treatment last night. The only problem that I had was that after my treatment, my blood pressure was low and my pulse was high. The nurse at the clinic said that I need to go see my cardiologist about my strange heart rate. When I am seated, my blood pressure is fine and my heart rate is slow. The doctor came by and prescribed a beta blocker to help regulate my heart beat. I'll have to ask the cardiologist what all a beta blocker does when I see her next week.

The doctor visit was not all that great. He arrived at the clinic about 7:00, and must have been gone by 8:00. He buzzed by my chair and dropped off a prescription. I did not get a chance to ask about going back to work. In fact, the nurse came by after 8:00 with a prescription for a phosphorus blocker. The doctor had written a one-month supply. I told her that my insurance company does mail-in prescriptions for 90-day supplies of medicine. She said that I should have mentioned that before the doctor left. It's too bad that I didn't know that the doctor had left or that he was going to give me another medication.

The speed of the doctor's visit reminded me of being in the hospital. If you do not have a list of questions written down and sitting in front of you when the doctor shows up, then you do not get to ask any questions. So, for next week, I am going to write down all my questions and hold them in my hand until I see him. That is the only way that I am going to be able to find out anything, it seems.

The other thing that I am still missing is my insurance card. I called my human resources representative at work this morning to check with Unicare and see why they haven't mailed my card yet. I can't order my new prescriptions or fill out my transplant paperwork until I get that insurance card. Hopefully I will either receive the card today or find out why I haven't received it yet. If it comes before Tuesday then I can turn in the paperwork the next time that I see the nephrologist.