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6 month Transplant Visit

November 11, 2008 2 comments

I had my 6 month post-transplant visit with the Surgeon and Transplant Coordinator (Nurse) today.

I had expected to be decreased on my Immunosuppressants (Prograf and CellCept), but that didn’t happen. However, the target blood level for Prograf was slightly decreased, from 8-10 to 7-9; the CellCept is not adjusted according to blood level.  So I guess I was indirectly decreased, although not right now.

I did have 2 medications stopped:  Dapsone, which is for prevention of PCP (Pneumocystis Carinii Pneumonia) and Valcyte, which is for prevention of CMV (I was on a double dose since my donor was CMV + and I’m CMV negative). Apparently, the initial suppression of my T Cells with Campath has worn off, and thus I no longer need those 2 meds. 

As a side note, when I was still on orientation at the hospital I was hired for right out of nursing school, one of my first patients was a 10 year old who was less than 24 hours post-op from a living donor kidney transplant (in 1989, back in the days when Cyclosporine was used because Prograf hadn’t yet been invented). Campath had probably not yet been invented as well, and they were using a brand new class of drugs called “monoclonal antibodies”. This girl was given Orthoclone OKT3.  IIRC, this drug was not given prior or during transplant, but was given if there were initial signs of rejection.

This drug was pretty scary, as the side effects included chest pain, heart dysrhythmias, shortness of breath, wheezing, etc. It turns out that this girl had the chest pain and shortness of breath, and had to be put on oxygen and given several Albuterol treatments. I don’t think that this is used, as Campath or Thymoglobulin are the drugs of choice, and are given mainly to prevent rejection, while the OKT3 was (at least initially) used to TREAT acute rejection. How times have changed….

The other (very minor) issue was that I’ve had intermittent pain in my left abdomen, around where the transplant is. I wasn’t very concerned, but did tell the doctor. He examined me, and felt it was maybe a pulled muscle, or as I suspect, pain from sitting too long with jeans that have a tight waistband.

My labs continue to be stable. My hemoglobin is 11.9, so the Procrit continues, my creatinine is 1.2, my Prograf level is 9, and everything else looks great. I’ll post the labs tomorrow when I’m able to enter them into my spreadsheet.

I  had a split-second panic this morning, when packing my lunch box, I realized I forgot to take my morning meds yesterday. Nothing I could do about it, so I took them a little earlier today (I did take my evening meds last night). Just don’t tell my doctor 🙂

My BP continues to be excellent; 124/64. It’s been since last winter when I took my last BP med, which never ceases to amaze me. I was disappointed when I lost weight after gastric bypass, and had to have an INCREASE in BP meds, but now that my “natives” (kidneys) are totally shot, it was probably the kidney failure that caused the hypertension.

My weight is up 5 lbs since last month, so I need to cut down on my intake. I continue to walk daily at work, and Jackie and I started walking nightly. The problem is that I “graze” at work, so I’ll have to cut that out.

‘Til next time….

Medical Article Scan for August 2008

September 3, 2008 Leave a comment

I know; it’s September. Better late than never…

Anemia of Chronic Disease: An Adaptive Response?  The authors argue that anemia may be beneficial to patients with inflammatory disease, and advocate restraint in treating mild to moderate forms of anemia. This may be proven someday, as they are now finding that too much injected erythropoietin (Procrit, Epogen, etc) can have adverse effects if used to bring hemoglobin up past 12.

CMV Infections Affect More Than Just Patients With Compromised Immune Systems – researchers have discovered that Cytomegalovirus, which is particularly dangerous to those with suppressed immune systems, can also be reactivated in those with normal

Want A Reason To Love Your Lower Belly Fat?….     Fat in the lower abdomen and thighs is rich in adult stem cells.  Maybe they can set up a plan for those having gastric bypass to donate their extra fat after weight loss to cover the cost of cosmetic surgery?

Does Too Much Sun Cause Melanoma? You’ll notice in the past that I’ve had articles on Vitamin D. This article reports that sun can cause the more “benign” skin cancers, but not melanoma, and that we must strike a balance between the need to protect the skin from cancer and the need to get Vitamin D.

Long Term Weight Loss… – study of women which shows that in order to maintain a 10% weight loss, there needed to be 5 days a week of 55 minutes of exercise. On the bright side, small changes throughout the day can be partially substituted, such as moving around more, less TV, etc.

Total Calories More Important Than Dietary Fat In Diabetes Risk – decreased risk of diabetes is linked to weight loss, and not to specific nutrient content. There are other conclusions in this study, such as consumption of soft drinks was associated to unhealthy behaviors and consumption of fruit juices to healthy behaviors “to some extent”.

Stem Cell Scientist Predicts Health Revolution – immature adult stem cells are predicted to be as important a revolution in the 21st century as antibiotics were in the 20th century.

World’s First Transplant of Both Arms – Last month, a surgery team in Germany transplanted bilateral arms onto a 54 year old farmer who lost his in an accident. The 2 things of interest are the actual procedure and what was involved, as well as the hurdles afterwards, such as immunosuppression and the lack of a blood test to catch rejection.

Positive Thinking May Protect Against Breast Cancer – Yet another study affirming feelings of happiness and optimism as providing a “protective role” against disease (in this case, breast cancer).

Transplant Week 14, Labs, Other Stuff

August 8, 2008 2 comments

I’m almost 14 weeks since my transplant, and everything is going well.

I had labs this week, and my creatinine is boringly still normal (I’m NOT complaining). It’s up slightly, but that’s either just normal variation, or maybe from my Prograf being a little elevated.

Lab highlights: Prograf is 10.8, and they want it between 8-10 at this point; hemoglobin is coming up, and is now 10.2, a week after starting Procrit; and my iron studies are all normal. In addition, my CMV continues to be negative. They had decreased my Valcyte several weeks ago (the anti-viral med to prevent CMV), so it’s obviously working despite the lower dose. And, they decreased my Prograf by 1mg/day to 3mg in am and 3mg in PM.

I’ve been walking consistently. I did miss Wednesday because I had ankle pain. This was due to my orthotic splint rubbing, which was a result of new shoes. I’m wearing my old shoes for now, and gradually breaking the new ones in. I’m now to the point where I can keep a fairly good speed going up the large incline, and not getting as short of breath with it.
I renewed by CPR this week. We take the American Heart Association course, and I like this for 2 reasons. The “book part” we do online, which means we can do different sections at different times, and when we are done, we print off the certificate, make an appointment for the “hands on” portion, and finish up with that. The 2nd reason is that it’s good for 2 years, while American Red Cross is good for 1 year. I’ve taken CPR now since 1986, and pretty much can breeze right through at this point. I’ve done CPR on a handful of patients; fortunately, it’s all been in the hospital/clinic, so I always had an Ambu bag to ventilate, and never had to do true mouth-to-mouth (I’ve had friends that have done it this way, and usually the person on the receiving end vomits, so you have to clear the mouth out and resume artificial respirations; yuck!). The only problem I have is that they keep making these minor changes which end up being confusing. No more 5 compressions to 1 ventilation with 2 man Adult CPR; it’s now 30 and 2. And instead of compressing the chest of an infant 1/2″-1″, it’s now 1/3 the depth of the chest. It’s enough to make you crazy. When you are in the actual situation, and the adrenaline is pumping, you don’t COUNT; you just do it. Another recent change is that on an infant, you can use both thumbs to do compressions, with the rest of the hands encircling the chest. Newsflash: we did that back in the late 80’s/early 90’s when I worked in the hospital. I guess they figured out that it is a good way of doing it; that is, until they change it again in 2 years!

Try not to be too jealous, but gas at the supermarket around the corner from our house was $3.45 this morning on my way to work! As of now, oil is down to $115.38/barrel, down $4.64 from yesterday.

Not much planned for the weekend. I’m working Sunday, and on Monday, we’ll be going to the school board meeting.

Yesterday, I was in a fast-food drive-thru, and saw a rather odd police car: a Pennsylvania State Police Dodge Magnum (I found a pic on the internet, but can’t hotlink to it).

Whenever you feel as though there are insurmountable obstacles, or feeling that your life is tough, read this.

Transplant Appointments Today (7/23/08)

July 23, 2008 3 comments

I had my monthly appointments with the Transplant Surgeon and the Transplant Nephrologist today. They both said I look GREAT, and there are no major issues.

My labs are still stable and the new kidney is working well. In addition to the regular labs, I also had an Immune Cell Function test done as well as a level to see if I have CMV from the donor kidney, but those won’t be back today. The immune cell function test is a guideline to make sure both that I’m taking my immunosuppressives and that the doses I’m getting are doing what they are supposed to. The CMV “titer” is to determine if the kidney I received that was CMV + has caused me to get CMV. They lowered the Valcyte dose (due to my white blood cell count dropping); this med is used to prevent me from getting CMV, so it will be interesting to see the result.

If you look at my labs, you’ll see that my hemoglobin is stable, but low. The nurse said that they would expect my hemoglobin to be at least 10 by now. However, the Nephrologist decided to put me back on Procrit for a while, to “bump up” my hemoglobin. He wasn’t at all concerned; in fact, he said that since I have Beta Thalassemia, my hemoglobin might take a little bit longer to increase back towards normal.

Other than that, I have labs in 2 weeks, and a return appointment in 3 weeks (it should have been a month, but they didn’t have any appointments on that day).  At the next appointment, I’ll have my 3 month follow up labs to check for Hepatitis B and C, and HIV, since my donor died of a drug overdose. I don’t anticipate any problems. In September, I’ll also be rechecked for BK virus.

If you’re having problems with a low cholesterol or need to gain some weight, this might be the answer.

Labs from June 11

June 12, 2008 4 comments

I got a call on my Prograf/FK-506 level, and it’s too low; 5.1 (the goal at this point is a level between 8-10).  That sure would explain the drop in creatinine from 1.4 to the current 1.2 (I was told that my creatinine will probably drop some when they ease up on my immunosuppressants over the next few months).

Interestingly, the Transplant Nurse was talking about how some patients cheat on their immunosuppressant meds. They don’t take them for a while, and then take them 2 days before their labs, and everything looks good, until they end up rejecting. When he called me with my labs, I assured him that I am FANATICAL about taking my meds. They do have a way to detect the cheaters, though. They periodically check an “immune function”; if it’s abnormal (too high?), they know the person is non-compliant.

In my opinion, being non-compliant is in a way unfair to others. If a non-compliant person gets a kidney, and loses it, then someone who would have taken better care of it loses out. I firmly believe that recipients have a DUTY to take care of their transplant as well as they can.

As for the other 2 labs; the CMV level and BK Virus screening, I probably won’t know anything about them until next week.

Transplant Day 39

June 11, 2008 5 comments

Kevin and I just got back from my bi-weekly appointments with the Transplant Surgeon and Transplant Nephrologist.

I started out having labs drawn, we then went to breakfast, and then up to see the nurse and doctors. Everything is going GREAT. My creatinine is 1.2, and my kidney function is above 60%! (they don’t quantify above that; anything over 60% is considered normal)  I looked back at my labs, and was able to track my creatinine back to April 2000; at that point, it was 1.6. They didn’t start reporting GFR until 2004, and in March of that year, it was 29.2.  This was the first BMP (basic metabolic panel) since the mid-late 1990’s that ALL values were normal.  Dr. Varma, the Transplant Surgeon, had a huge smile, and said that I couldn’t have asked for a better kidney. My Prograf level (FK-506), CMV level (to determine if I have the virus active in my body), and BK Virus screening were not back yet.

Other highlights: I don’t have to return for another 2 weeks (I was told initially I would have appointments WEEKLY for 3 months), I am cleared to drive (WHOPPEE!), and I can return to work sooner than planned (tentatively set for July 7).

The Transplant Nephrologist was also pleased with my progress. I asked about still taking Vitamin D, and he said it was OK, and that he will check a Vitamin D level and PTH in several months.  Also, he will recheck my iron studies to see if I need another IV dose of Venofer.

The Transplant Nurse explained my immunosuppression regime in a little more detail. I follow a kidney transplant group online, and many of the patients report a dose of CellCept of 1000 mg twice daily; mine is 500 mg twice daily. The reason for the lower dose is because they hit me with Campath prior to surgery, which basically wiped out my T cells, and decreases the need for more heavy immunosuppression. I guess it’s a case of a synergistic effect. Using smaller doses of more meds is better than larger doses of less meds.

As things are pretty much stable, I probably won’t blog every day, at least about my transplant. However, I will update my “Vital Signs…” page daily.

I’ve come upon some useful browser add-ons, as well as other software. First, there’s “Slimbrowser”It incorporates a large collection of wonderful features like recoverable popup killer, form filler, site group, quick-search, auto login, hidden sites, built-in commands and scripting, online translation, script error suppression, blacklist/whitelist filtering. In plain English, it’s a lean, mean alternative to Internet Explorer, and more secure.

There are several add-ons to it as well. First, there’s Roboform, which incorporates into ALL of your web browsers, and fills in passwords and forms. It’s safe, because you have to log on with a master password to use it. Another worthwhile add-on is Blaze-FTP, which is a free FTP client.

Another add-on that I now use is BlogRovR. It is an online website/application that allows you to centralize the blogs that you read on a regular basis. Unfortunately, it’s only available for Firefox.

Transplant Day 32, New Blog

June 4, 2008 2 comments

Not much new as far as the transplant; everything is status quo (which is good).  Vitals are all stable, and I managed to get more fluid in yesterday. My urine hasn’t caught up yet, as I think I might be on the dry side; it’s a darker amber color, so I need to take in even more today.

I slept well last night, and no more GI issues from the CellCept.  I had weekly lab work today at the local Geisinger clinic, but the results won’t be back until tomorrow.  Next week, I have a screening for BK virus, which I’ll explain further below.

I received material from Roche Pharmaceuticals, manufacturer of CellCept. They put together an excellent booklet titled “New Beginnings Wellness Guide”. There are easy to understand explanations on many aspects of transplant. One of the pages discusses “Getting To Know Germs”. Sounds boring, but with a suppressed immune system, it’s important. The 2 main virus groups that are a concern are the Herpes Family of Viruses and the Polyoma Family.

Herpes isn’t just an STD (Herpes Type 2). There are 8 different herpes viruses that infect humans, including those that cause chicken pox, mono ( caused by Cyto Megalo Virus and Epstein Barr Virus), shingles (the same that causes chicken pox), and cold sores (Type 1).  Infection/reinfection with these viruses can cause serious problems when immunosuppressed, including rejection, cancer (Lymphoma), or major complications with various organ systems. In my case, my donor was CMV + and I was CMV -. I currently take Valcyte to prevent CMV. My dose is higher (900 mg daily) due to me being CMV -. 

As for the Polyoma family, the BK virus is the one of concern.  By the age of 12, 90% of all Americans have been infected with BK. For someone with a healthy immune system, it’s not a concern. But when the immune system is suppressed, it can cause kidney damage/failure. The treatment is to change around the immunosuppressant meds and lower the level of immune suppression to the point that the transplant will not reject, and the immune system is able to fight off BK.  

I’m up and running on my other blog now at MyKidney.com.  This is a site that eventually will include multiple bloggers at various stages of CKD (Chronic Kidney Disease); I’m blogging as a new transplantee. As of now, there is me, Krissi (who runs the site, and had a transplant from her brother last year), and Elizabeth, who is currently on hemodialysis and awaiting a blue sequined kidney 🙂 . I have done 2 posts so far, and the second post is on an interesting subject. The LA Times reported on 4 Japanese gangsters getting liver transplants at UCLA, which meant that AMERICANS awaiting livers were passed by at least 4 times. Check it out here.