New UNOS Website

The United Network of Organ Sharing--UNOS--has just released news of their new and vastly updated website. The new site has tons more information and links for both pre and post-transplant patients. If you are a transplant patient (pre or post) or a caregiver for a transplant patient, please head over to the UNOS website for the incredibly valuable information and resources they provide.

I have pasted a copy of their updated newsletter below. Hopefully, the links and pictures will remain visible.    PLEASE, read this info!

February 2018

February 2018 Transplant Living Newsletter We’re back. You’ve probably noticed the absence of our Transplant Living newsletter in your inbox every month. Our team has been working hard behind the scenes, building and adding new content to our Transplant Living website. It’s been awhile since we’ve shared with you what’s been happening here at UNOS, and we have a lot to catch up on. Be sure to keep an eye out for our revamped newsletter around the last week of every month.  New Transplant Living Website In January, UNOS launched a newly redesigned version of our patient website, Transplant Living. Along with improving website functionality and creating mobile-friendly design, we expanded content in the kids and living donation sections, while adding an entirely new kidney transplant learning center section. Visit https://transplantliving.org/ to check out the new content and features. Please share this valuable educational resource with a friend, family member, or loved one who wants to learn more about the organ transplant process. Public Comment This is your opportunity to share your opinion. The most recent public comment cycle opened on January 22nd and will run through March 23rd 2018. Read this article on UNOS.org for more information. To read policy proposals, submit a public comment, or review previous proposals, visit the Public Comment page on the OPTN website.   UNOS Ambassadors and Spreading Awareness Through Social Media If you are passionate about volunteering, raising awareness, or spreading the word about organ donation and transplantation, there are a number of ways you can get involved. First, learn the facts about organ donation. Our websites offer valuable information from trusted experts and resources. Next, join our volunteer program to become a UNOS Ambassador. As a UNOS Ambassador you will help educate your community about UNOS, organ donation, and transplantation. Learn how to become a UNOS Ambassador and how to be part of this national community of organ donation advocates.    Lastly, be sure to follow us on social to share our posts to raise awareness for organ donation and transplantation with your friends and followers.    Be sure to like/follow us on the following social media platforms:  Facebook Twitter Instagram LinkedIn In addition to the Transplant Living newsletter, did you know we also have four other UNOS newsletters? Follow the link to subscribe. UNOS ENews – Stay up to date on the latest information and updates happening around UNOS. Transplant Pro ENews – Keeps OPO, lab, and transplant professionals informed of the latest updates to policy, education, and professional resources. UNOS Careers ENews – Want to work for UNOS? Be alerted about recent job openings. UNOS Ambassador ENews – Learn about volunteer opportunities and how to promote organ transplantation and donation in your community. Learn more about the program and sign up to become a UNOS Ambassador here. 2017 Record Numbers UNOS had another record-breaking year in 2017. For the first time, the number of deceased organ donors in the U.S. exceeded 10,000. This led to another record of over 34,700 organ transplants performed in 2017, a 3% increase over the previous year. Read the full article on our website for perspective about 2017 organ donation and transplantation data or visit the OPTN website to view data reports. National Observances A number of national observances throughout the month of March touch the organ donation and transplantation community. Below are just a few to mark on your calendar.  National Kidney Month National Social Workers Month World Kidney Day – March 8th UNOS Anniversary – March 21st National Doctor’s Day – March 30th We will observe these on our various social media platforms and hope you will share our posts with your friends or followers. Visit TransplantLiving.org

27 February 2018: BK and CMV Explained

A week has gone by and it is time to fill you in on both the BK Virus and the CMV or Cytomegalovirus and how both affect transplant patients and their transplanted organ. So, let's begin with the BK Virus...


(Definition from the UC Davis Transplant Center)

BK Virus

"In 1971, a  human polyomavirus was discovered  from the urine of a renal transplant recipient whose initials were B.K. This virus has been named BK virus. First time BK virus infections occur in early childhood in many people, typically without any symptoms. Later in life, the virus remains quiet (latent) but present in the kidneys. Almost all illnesses caused by  BK virus occur  in those receiving immunosuppression after an organ transplant or those with other acquired immune system deficiency. BK virus is estimated to cause a progressive kidney transplant injury in 1-10% of renal transplant recipients.

Actual damage in the kidney can be detected by a kidney biopsy.  Kidney  injury develops late in the course of BK virus disease and screening and early treatment is beneficial for long-term transplant survival.  Screening for the BK virus in kidney recipients usually occurs via blood or urine tests. [Our] Programs routinely screen for BK virus to allow for early detection and treatment. Reducing the amount of immunusuppressive (anti-rejection) medication can help to decrease the virus. A medication called leflunomide has also been shown to inhibit  BK virus in the blood which prevents injury to the transplanted kidney."

(From the National Kidney Foundation)

What is BK virus?

"BK virus is a virus that most people get in childhood. Symptoms can feel like a common cold. Once you get a BK virus infection, the virus stays in your system for good. But it does not cause a problem for most people. This is called latent, or like being ‘asleep’ in your body.  Sometimes, when your immune system is not working well, the virus wakes up. Then it can cause symptoms of infection. BK virus is also called polyomavirus.

What increases the risk for BK virus infection?

• Organ transplant, like a kidney transplant
• Kidney surgery or injury
• Older age
• Health conditions that weaken your immune system (HIV and Diabetes, to name a few)

How does transplantation increase the risk for BK virus problems?

After your transplant, you will take special “anti-rejection” medicines.  They cause your white blood cells not to work as well.  White blood cells help your body fight infection. When you take these medicines, your body has a higher risk for infection.  You can have BK virus in your system and not be aware of it.  After your transplant, the virus may become active again. This is from the anti-rejection medicines. It can damage your new kidney and cause your body to reject it.

How will I know if the BK virus is in my system?

Your healthcare provider will check for signs of the virus in your system. They will check both before and after receiving your kidney transplant. Since BK virus can “wake up,” it is important to watch for signs of infection.  Symptoms may include:

• Changes in vision, like blurred vision 
• Changes in the color of your urine (urine that is brown or red in color)
• Pain when you urinate
• Difficulty urinating 
• Needing to urinate more than is normal for you
• A cough, cold, or trouble breathing
• Fever, muscle pain, or weakness
• Seizures

Having any of these symptoms could be a sign of infection. This can affect the success of your kidney transplant. It is important to tell your healthcare provider if you notice any signs of infection.

How will I be monitored for BK virus infection?

After your transplant, your blood and/or urine will be checked on a regular schedule.  Your healthcare provider will decide how often to check you for BK virus and other infections.  This helps make sure your transplant is not at risk."

Now, let's define CMV, or Cytomegalovirus...

(From Ohio State University's Wexner Medical Center)

Cytomegalovirus (CMV): Risk for the Transplant Patient

"Cytomegalovirus is part of the herpes virus family. It is usually harmless to people with healthy immune systems. After the transplant, you will be on several drugs to prevent rejection of your new organ.  These drugs suppress your immune system so you may be at higher risk for CMV infection.

How do I know if I have CMV? 

Blood is drawn during your transplant work up to check for CMV in your system. A careful screening also is done to check for this virus in the donor. Even if you have never been exposed to CMV, the person who donated your organ may have been exposed. Knowing if one or both of you have been exposed helps the transplant team take care of you after the transplant. 

Most people with strong immune systems do not know that they have been exposed to CMV. CMV may remain dormant in your body for life but can reactivate at any time when your immune system is weak or suppressed.  

CMV is spread by close contact with body fluids. Body fluids are urine, saliva, blood, tears, and sexual fluids.

Signs of CMV infection CMV can infect any organ.

Some signs of CMV infection include:



*Fever greater than 101 degrees F (38 degrees C) 

*Muscle weakness 

*Fatigue 

*Headache, confusion, seizure 

*Arthritis pain in joints 

*Blurry or loss of vision in one eye 

*Shortness of breath 

*Blood in stool, abdominal discomfort, nausea and vomiting

How is CMV diagnosed?

Sample of blood, urine and sputum may be cultured to see if the CMV virus is active. Other blood tests also may be done. In some cases, a biopsy of the infected organ is done. This means a sample of tissue is removed from the organ for testing.  

Prevention and Treatment

If blood tests show that you have CMV before your transplant, antiviral medicines are given. Additional tests may be used to check your condition.  Because this virus lays dormant in your body, it is possible that you may become infected at any time during your life after transplant. Even if you show no sign of infection, you may be given antiviral medicines after transplant to reduce your risk of infection.  Not every transplant patient develops CMV. However, an infection can be very serious. Antiviral medicines may be given to prevent the spread of infection, but do not cure it.

You need to contact your transplant team right away when you are not feeling well."
 

Post-Transplant Update: 20 February 2018

Some terrific news was received last week that was a long time coming...

I had my [now] monthly Kidney Clinic visit last Wednesday morning (14 Feb). My weight was good at 112.2 Kg, my vitals were all in line, and the clinic pharmacist was pleased with my current meds, my schedule for taking meds and how I am tolerating all of my meds. Here is my current list of meds:

Anti-rejection Meds

*Tacrolimus (Prograf): 1 mg 2x/day

*Prednisone: 5 Mg 1x/day

*Mycophenalate (Celcept): 250 mg 2x/day

Heart Meds

*Isosorbide: 20 Mg 2x/day

*Hydralazine HCL: 25 Mg 3x/day

*Atorvastatin: 20 mg 1x/day (at bedtime)

*Aspirin: 81 mg 1x/day

Misc

*1-A-Day Men's Vitamin: 1x/day

   *I have to take the non-50 Years+ version as that one contains Iodine, which I am allergic to, internally.

I also will be changing the Celcept to a comparable med called Myfortic because of my inability to tolerate higher doses of Celcept, which cause me a lot of diarrhea.

The Myfortic should not have any appreciable side-effects, but carry the additional benefit of my being able to lower my daily Prograf dosage. This is important because a significant side effect of Prograf is hand tremors. The lower my Prograf intake, the less my hands shake.

I should be starting the Myfortic in the next week or two. Of course, I will let you know how the new med goes...

As I grow stronger, some of these meds will be adjusted a/o eliminated; depending on how I am doing. Other meds may also come into play in the future as my health dictates.

After the Pharmacist visited, my main clinic doctor--and the Kidney Clinic's Medical Director--came in. He was very pleased with my progress! My vitals are looking wonderful, my weight has increased proportionally, my kidney is performing beyond expectations (FINALLY!), my heart is in excellent shape and I am finally healing properly from both surgeries [this year], which means I can now begin lite exercising which will further my overall progress.

(And here's the terrific news I referred to at the beginning of this post...)

So, because things are doing better and better, my doctor has released me from the Kidney Clinic's care to that of my local nephrologist! 

Normally, this would happen between 1-3 months post-transplant; but because of everything I've had to deal with since the transplant, I took a full 9+ months to get that clearance!

My next visit with the clinic is around the anniversary date of my transplant, and about every year thereafter.

Now, getting that clearance does not mean I am finished with other doctor visits--besides Nephrology. From now on, I must have regular follow-up visits (and a few new doctor visits) from  Cardiology (obvious reasons), Oncology (check for potential cancer development), Dermatology (check for skin cancer), Radiology (Renal biopsies, renal artery check etc.) Neurology (look for deficits), Gastroenterology (colonoscopies), Immunology (immune system health), Primary Care (general care) and Dental (oral health and free of germs). These appointments will happen every six months, or so, depending on physician instructions. Collectively, all of these various medical disciplines will help ensure my best health possible.

In addition, I must get a flu shot every year from now on so that I avoid any influenza virus from attacking my new kidney. Boosters needed for pneumonia, hepatitis, etc will be determined by my nephrologist.

In other good news...

Over this past week, my appetite has been good, the nausea decreased, I am sleeping decently and my urine output has been consistent. Overall, I am doing and feeling much better. I finally feel like I am on the upswing.

My next labs will be drawn tomorrow (21 Feb), and I will post the results here as an addition to the end of this post.

So, there you have my fantastic news! 

I hope that you have an excellent day, no matter your circumstances! 

Good Health to All!

ScottW

22 Feb 18
**This update is later than I expected because all these most recent lab results did not get posted until this afternoon. The +/- represents comparison vs two weeks ago.

*Tac:   6.7  (No Change--NC)  In current target range (6-8).
*Creat:   1.56  (-0.02) In Range--I.R.

*CA:  10.1  (NC)  I.R.
*RBC's:   4.2  (+0.09)  Low
*WBC's:   7.4  (+0.3)  I.R.
*HCT:   37.4  (+1.1)  Low, but improving steadily
*Lymph:   11.8  (+1.2) Low
*Lymph ABS:   0.9  (+0.1)  Low
*Neut:   71.2  (-3.2)  I.R.
*Neut ABS:   5.5 (NC)  I.R.
*GFR:   49  (NC) High
*BUN:   29  (+5)  High
*Gluc:   95  I.R
*Phos:   3.7  (+0.8)  I.R.
*Hemo:   11.9  (+0.3)  Low
*K+:   4.4  (-0.1)  I.R.
*NA+:   138  (-3)  I.R.
*BK Virus:  NOT Detected
*CMV:  NOT Detected

The majority of these results are either in line, or getting there. As I've stated before, surgery messes up your lab results, and it takes time to get your numbers back to where they need to be. Mine are coming along very nicely!

**The BK Virus and CMV checks are done once each month (post-transplant, of course!) to examine the presence of either of these viruses. Having one or both in your transplanted organ can kill the organ, and endanger the patient's life. I will explain both of these issues in my next blog.

Post-Transplant Update: 07 February 2018

My first gap of two weeks between lab draws has passed without a hitch!

06 Feb 18 Lab results:

Tacrolimus :  6.7 (+0.2)  **Current Target Range-- 6.0-9.0

Creatinine:  1.58 (-.03)   **Current Target Range-- 1.40-1.70

Calcium:   10.1 (+0.1)     **Target Range-- 8.4-10.4

Red Blood Cells:   4.11 (+.06)    **Target Range-- 4.50-5.90

White Blood Cells:   7.40 (+.01)   **Target Range-- 3.60-10.60

Hematocrit:   36.30 (+.60)   **Target Range--  41.0-53.0 

Lymphocytes:   10.60 (-0.70)   **Current Target Range-- 24.0-30.0

Lymphocytes ABS:   0.80 (-.10)   **Current Target Range-- 1.00-1.50

Neutrophils:   74.40 (+2.60)   **Target Range-- 36.00-66.00

Glomerular Filtration Rate:   49 (+2)   *Current Target Range-- 60+

Blood Urea Nitrogen:     24 (-2)   **Target Range-- 8-20

Blood Glucose:   105 (+5)   **Target Range-- 80-100

Phosphorous:   2.90 (-0.3)   **Target Range-- 2.30-4.70 

Hemoglobin:   11.60 (+0.2)   **Target Range-- 13.50-17.50

Potassium:   4.50 (+0.3)   **Target Range-- 3.50-5.00

*Sodium:   141   **Target Range-- 137-146

*I just added Sodium (NA+) because this lab value is watched by the Transplant Committee due to the detrimental effects that high sodium can have on any    transplanted organ.

My labs are looking great! Everything is coming back in line with my pre-hernia repair numbers--whether those lab values need to rise or fall accordingly to their target ranges.  I included the ranges for all labs as a reference point for my readers. Note the labs marked with **Current Target Range. I added this distinction because the target values of these labs will change as meds are adjusted the further we go along.

Everything for me has been terrific the last week. My abdominal pain is reducing, and I am better able to move about. Even with the binder on, I still begin to hurt after a time; but without the binder at all, the pain comes on much faster.

So, during the day, the binder stays on. During the night--unless I am hurting too much--the binder comes off.

My plan for reducing the surgical pain is working. Over the past two weeks I have felt much better than during most of January. There is still a long way to go, but I have gotten past that bump that was keeping me from better healing. I anticipate accelerated healing from here on out.

Urine output has been good. I did a 24-hour draw this past Sunday that lasted from Sun 9a-Mon 9a. In that period I drank 3.4 Liters of fluid, and excreted 2.9 Liters. That puts me exactly at the 500cc (1/2 Liter) buffer between what I consume and what I excrete, just as my transplant doctors want. This target is there so as to avoid possible dehydration of the kidney. I have previously explained that some renal transplant patients become dehydrated because they fail to consume more fluids than they excrete, thus leading to the dehydration. The result of any dehydration of a transplanted kidney is a high probability of organ rejection, leading the patient back to dialysis and starting the whole process over once more. 

For me, I will consume whatever amount I need every day to avoid such an outcome!

Food-wise, my appetite is coming along nicely; continuing to recover from the effects of surgery and pain meds. I know I will be eating even better once I start walking regularly, then better still once I get the clearance to begin exercising. Consummately, my metabolism will also increase which will both drop fat and add muscle weight. Soon...soon. 

I have my now once per month Kidney Clinic appointment next Wednesday, 14 Feb, at 0945a. I will let you know how that goes, any med changes, etc.

Until that time, have a fantastic week!

Good Health to All!

ScottW