CMV and My experience and no Holds Barred (May be graphic for some)

[Katonsdad]

Okay , so I am post transplant by 3 years . All is going great . Lab tests are good . i am feeling like a million dollars.
Then  "It" all started .  I started feeling yucky . Just a bit , more flu like than anything else .  I went to the doctor
and he diagnosed an intestinal bug . Lab work was still okay . A few days later I could not keep much in me .(lower end)
I was still just feeling yucky .  The doctor still believed it was just an intestinal bug , Here take some antibiotics.

I was getting weaker and weaker . I knew my transplant medicines were not working to their full potential . I needed
help with this problem .  I could still not keep anything in me . Anything that went in I felt like it went straight thru me .
I was still working but it was hard to get up everyday and go to work . It was a chore just to get out of bed . One weekend
I finally gave in and went to a local  emergency room . There I was give IV fluids and pain medicine for my rear end .
I was sent home with instructions to see my doctor if symptoms did not let up .    The next morning I called the transplant
center and was asked to come in on clinic day , which was Tuesday .

My wife and I at that time were the proud partents of a 1 year old boy . So we all packed up on Tuesday and
took the 40 mile drive into downtown LA .  I could barely walk by this time as we made our way to the clinic .
We checked in and I darn near collapsed into a chair . I could not get up , I true felt like the end was near for me .
They called me back and they needed a wheelchair to get me in the back .  All the clinic staff came running .
Laying on the examining table i was so weak . I felt like I was barely breathing . I did not want to open my eyes .
They took blood pressures and deemed me very sick .  In all my days . I feel this is the sickest I had been .
I started crying as I felt my last breathers were near . I had a baby boy who needed me . I did not want to go .
I truly felt I was at deaths door step and I was getting ready to ring his doorbell . My fingers were right there .
I was so tired just let me rest .
The doctors were determined to see me thru this . I was rushed across the street to the main hospital where they
pumped me back up with fluids . I started coming out of the negative state I was in . I am not done here yet . I needed to
fight this issue . It was just another draw back .  I was still very weak . I laid in the emergency room for 14 hrs waiting for
a room on the correct floor . (The transplant floor , where they new about my health issues . This was the worst 14 hrs
I had ever had .  I still had the bowel issues and needed a rest room . They would not help me up and I was so weak
They said just go and they would clean it up . Boy that was the wrong thing st say .  I tried to get to the rest room
but they could not help me get there in a timely manner .  Well they finally got rid of me by sending ,e to a room .
There was a bathroom , I could reach it . Yea !!!!!!!

They determined my most likely problem was CMV . Both me and the donor were CMV positive and that was the most
like;y cause . I would need to be scoped out the next day .  The test was scheduled and they started the pretest
parade .    I was not allowed to eat anything . They wanted a clear track . Heck . I had been racing on that track for a
week now and it was raced out !  I really do not believe there was a fart left up there .   The said I had to
drink 3 liter's of a fluid that tasted like motor oil . It was awful and disgusting . I could not drink a cup of it in 15 minutes
and I needed  3 liters of this stuff .   The nurse came in and said if I did not drink it they would need to put a tube
up my nose into my stomach and poor it in . I think she was looking forward to me quickly swallowing the rest of
the fluid .

This stuff was so bad . I said bring on the nose tube !!!!!!!!  She looked surprised  (not as surprised I was having just said that)
They brought all the stuff for the tube setup and we started it  They inserted the tube and the nurse saying the entire
time. I have never seen anyone who would take this tube willingly.
It was easy to do though , While I was on dialysis I learned to relax and think only about the future . I block out everything
and take a few deep breaths .  I roll my mental clock about 5 minutes into the future to just after the procedure .
As you get to that moment the procedure is done and I would be hooked up to the machine .  It works with
the dentist also .

Well they got the fluids in and I pretty much sat in the bathroom all night . What a crappy night that was.  And sore .
My gosh my rear end was sore . A doctor came in during the morning hours and explained what he was going to do .
I was going to lay on a table and they were going to put a tube up my rear and look around .  I told him , they were
not doing that while I was awake !  I was way to sore . I could barely use Toiletpaper let alone have the ABC News team
driving around back there looking for a natural disaster !   He said they would get me something to put me out.

Well the test started and I was out ...for a Little while .  I woke up to a bigscreen TV image of my insides facing me.  I was
very groggy and they told me to relax .  As I woke more . I could only think of the Robin Williams joke of a man
having the same test and he looks at the picture and sees something . He shouts out OMG . Whats that is it Cancer ?
No sir , relax its just a fart ,    .

Well the test was done and I had a full blown case of CMV . I was loaded up with the correct medicines , spent a few days
resting and went home to my happy little family .

CMV is not fun . Transplant patients must be wary of this and if suspected get to the correct medical facility and get treatment .
Yes I was scared . I was never more scared than I was when I arrived at the hospital .  I have been thru Heart surgery , eye surgery
back surgery an angio plasty after a heart attack and several access surgeries . But this was by far . I feel, the closet I came to the end.
You need to watch yourself because no one knows you like yourself /

[angela515]

Thanks for sharing your story with us. I am also CMV positive, as was my donor, so this will help me keep my eyes open when I start feeling icky.

 

[kellyt]

"... and pain medicine for my rear end."   

What is CMV?   That sounds very scary!  I'm glad you're home and doing better.


Now...you should really write a book!  You can really paint a picture!      

[George Jung]

 I said bring on the nose tube !!!!!!!!  She looked surprised  (not as surprised I was having just said that)
They brought all the stuff for the tube setup and we started it  They inserted the tube and the nurse saying the entire
time. I have never seen anyone who would take this tube willingly.
It was easy to do though , While I was on dialysis I learned to relax and think only about the future . I block out everything
and take a few deep breaths .  I roll my mental clock about 5 minutes into the future to just after the procedure .
As you get to that moment the procedure is done and I would be hooked up to the machine .  It works with
the dentist also .

I am impressed! I am aware of the benefits of having a strong mind, cheers to you and glad that experience is over with.   

[goofynina]

What an ordeal you went through, thank you so much for sharing that, i am so glad you made it through and most importantly, you still have your kidney   

[Katonsdad]

Here is what CMV is  
FROM WIKEPEDIA
Cytomegalovirus (CMV) (from the Greek cyto-, "cell", and -mega-, "large") is a viral genus of the Herpesviruses group: in humans it is commonly known as human herpesvirus 5 (HHV-5).[1] CMV belongs to the Betaherpesvirinae subfamily of Herpesviridae, which also includes Roseolovirus. Other herpesviruses fall into the subfamilies of Alphaherpesvirinae (including HSV 1 and 2 and varicella) or Gammaherpesvirinae (including Epstein-Barr virus).[1] All herpesviruses share a characteristic ability to remain latent within the body over long periods.

CMV infections are frequently associated with salivary glands, though they may be found throughout the body. CMV infection can also be life threatening for patients who are immunocompromised (e.g. patients with HIV, organ transplant recipients, or neonates).[1] CMV viruses are found in many mammal species, but CMV species isolated from animals differ from human CMV in terms of genomic structure, and have not been reported to cause human disease.

In humans, CMV is found throughout all geographic locations and socioeconomic groups, and infects between 50% and 80% of adults in the United States as indicated by the presence of antibodies in much of the general population.[1] CMV is also the virus most frequently transmitted to a developing child before birth. CMV infection is more widespread in developing countries and in areas of lower socioeconomic conditions and causes the most birth defects in industrialized countries of all the herpes viruses.

[Chris]

While I was CMV negative prior to transplant, the donor wasn't and less than a year post transplant I got CMV. Mine effected the liver though. Liver levels skyrocketed, but my transplant center did not pay attention. Local doctor was very concerned because they levels kept rising. Skip ahead..skip ahead, the transplant clinic final decides to admit me, although not too... well one word that fits is concerned. While in the hospital they did every test except for what is commonly known to occur in transplant patients like EBV and CMV. They diagnosed me with chicken pox even though that test came back negative and I had no signs of chicken pox and they released me. Go back to the clinic with liver levels even higher and liver swollen and a doctor I met who works with transplant patients at the hospital came in to see me to see how I was doing. Told him what happened at the hospital and how I was feeling. Even though he was not my doctor or scheduled to see me, he quickly examined me and asked if they suspected CMV, I said no and he had the look of astonishment or the look of "what idiots am I working with". He quickly felt my liver, yeeoooow! and ordered a biopsy of the liver and. Unfortunately the hospital doesn't do CMV test on site like the other transplant hospital does, but at least he got the ball rolling and figured out what was going on. This confirmed what I suspected I had from reading books on transplantation and other medical materials. Finally got treated after two months of dealling with dimwits at my transplant center. I wish I could go to another center, but that's another story. CMV is a bugger and then I got it again about three months after they stopped my cytovene capsules for CMV. Think they stopped it to soon. Luckily no recurrence of it so far since local docs do check for it when I get sick.

Hope you don't get a recurrence.

[kitkatz]

Oh my gosh!  That was hilarious in a painful kind of way. You have a way with telling a story!

[okarol]

Yes, the story is well told - sounds awful Katonsdad!

Jenna and her donor were negative for CMV.  Jenna was still given preventative Valcyte once a day for 3 months following her transplant.

CMV was discussed in another thread and this was mentioned:

Just wanted to add,  if both recipient and donor are negative for anti-CMV Igm antibodies, the incidence of CMV is <5%.  If recipient is CMV+, the incidence of infection (independent of the donor status) is about 25%-40%.  Clinical infection occurs 3-4 mos. post txp. during maximal immunosuppression.

It should be noted that many deceased donors receive many blood transfusions, and it should be presumed that 1 or more units carry the virus.  In most cases, recipients receive valcyte at least the first 3 months after surgery.  Its an expensive drug, and when I had my txp. was told that it was not covered by medicare. That was one of the things discussed pre-transplant (to make sure I could afford it).

Also, there is no cure, but there have been some successes of preventing CMV disease vs CMV infection post transplant with the use of gancyclovir and valacyclovir.  There is a difference between CMV infection (where detection of the CMV antibody is present) and CMV disease (which presents clinically as fever, hi white count, hepatitis, pneumonia, things that can lead to organ rejection).

[KT0930]

Here is what CMV is 
FROM WIKEPEDIA
 CMV infection can also be life threatening for patients who are immunocompromised (e.g. patients with HIV, organ transplant recipients, or neonates

A few months after I had gotten out of the hospital with it, I ended up in the (Naval Hospital) ER for another reason, and happened to mention it to the doc who was treating me. He basically told me, "If I called a cold by it's scientific name, it still wouldn't be anything more than a cold. You weren't that sick." And he KNEW my history of kidney transplant - I had told him that in the same sentence! Idiot!

[st789]

That right!  No one knows your own body better than yourself. 

How do I find out wether I have CMV or not?

[KT0930]

How do I find out wether I have CMV or not?

If you or your doctor suspects it, there are blood tests that check for it.

[stauffenberg]

Because I had never been exposed to CMV and thus had no antibodies against it, but my donor had been exposed, I knew going into the transplant operation that I was likely to get CMV from the graft.  Despite considerable screening, beginning even prior to the transplant, with Vancovir and other anti-CMV medications, I developed the disease about a month after the operation.  The only symptoms I experienced from it were unusual tiredness, and with the proper i.v. medications the problem went away in about six weeks.

[kellyt]

Do "cold sores" have anything to do with CMV?  I have gotten cold sores on my mouth and chin since I was maybe 3 or4.  Not always having to do with being sick.  Case in point, I woke up the other day with two.  One on my upper lip and one just under by bottom lip.  Both small, but they respond to Zovirax.  I've been told "cold sores" are in the herpes family.  Most of the time I get them from distress to my lips like the heater being on and them drying out.  Once I tried to ex foliate my lips with a warm, wet washcloth and I got a cold sore!  Hate them!

Thanks.

[okarol]

kelly - it's the same family, but not the same virus:

Cytomegalovirus

     

    * Cytomegalovirus (CMV) [si-to-MEG-uh-lo-vi-rus] is a virus that infects most people worldwide.
    * CMV spreads from person to person by direct contact.
    * Although CMV infection is usually harmless, it can cause severe disease in persons with weakened immune systems.
    * There is no treatment for CMV infection.
    * Prevention centers on good personal hygiene, especially frequent handwashing.

 

What is cytomegalovirus?

Cytomegalovirus, or CMV, is a common virus that infects most people worldwide. CMV infection is usually harmless and rarely causes illness. A healthy immune system can hold the virus in check. However, if a person's immune system is seriously weakened in any way, the virus can become active and cause CMV disease.

 

What is the infectious agent that causes cytomegalovirus infection?

Cytomegalovirus is a member of the herpesvirus family. Other members of the herpesvirus family cause chickenpox, infectious mononucleosis, fever blisters, and genital herpes. These viruses all share the ability to remain alive, but dormant, in the body for life.

A first infection with CMV usually causes no symptoms. The virus continues to live in the body silently without causing obvious damage or illness. It rarely becomes active for the first time or reactivates (causes illness again in the same person) unless the immune system weakens and is no longer able to hold the virus in check.

 

Where is cytomegalovirus found?

CMV is found worldwide. The virus is carried by people and is not associated with food, water, or animals.

 

How do people get infected with cytomegalovirus?

CMV is spread from person to person. Any person with a CMV infection, even without symptoms, can pass it to others. In an infected person, the virus is present in many body fluids, including urine, blood, saliva, semen, cervical secretions, and breast milk.

CMV can be spread by any close contact that allows infected body fluids to pass to another person. CMV can spread in households and child-care centers through hand-to-mouth contact with infected body fluids. CMV can spread by sexual contact, blood transfusions, organ transplants, and breastfeeding. CMV can also be passed from an infected pregnant woman to her fetus or newborn.

 

Who is at risk for cytomegalovirus?

Anyone can become infected with CMV. Almost all people have been exposed to CMV by the time they are adults, but the virus usually does not make otherwise healthy people sick. However, some people are at increased risk for active infection and serious complications:

    * Babies born to women who have a first-time CMV infection during pregnancy
    * Pregnant women who work with infants and children
    * Persons with weakened immune systems, including cancer patients on chemotherapy, organ transplant recipients, and persons with HIV infection

 

What are the signs and symptoms of cytomegalovirus?

Active infection in otherwise healthy children and adults can cause prolonged high fever, chills, severe tiredness, a generally ill feeling, headache, and an enlarged spleen.

Most infected newborns have no symptoms at birth, but, in some cases, symptoms will appear over the next several years. These include mental and developmental problems and vision or hearing problems. In rare cases, a newborn can have a life-threatening infection at birth. Infants and children who get CMV infection after birth have few, if any, symptoms or complications. When symptoms do appear, they include lung problems, poor weight gain, swollen glands, rash, liver problems, and blood problems.

People with weakened immune systems can have more serious, potentially life-threatening illnesses, with fever, pneumonia, liver infection, and anemia. Illnesses can last for weeks or months and can be fatal. In persons with HIV infection, CMV can infect the retina of the eye (CMV retinitis) and cause blindness.

 

How soon after exposure do symptoms appear?

Most exposed people never develop symptoms. In those who do, the time between exposure and symptoms is about 3 to 12 weeks.

 

How is cytomegalovirus diagnosed?

There are special laboratory tests to culture the virus, but testing requires 2 to 3 weeks and is expensive. Blood tests can help diagnose infection or determine if a person has been exposed in the past.

 

How long does disease from CMV infection last?

The duration of disease varies, depending on the type of infection and the age and health of the infected person. Serious CMV infections that were acquired before birth can cause developmental problems that can affect a child for a lifetime. CMV infections in transplant recipients, cancer patients, and persons with HIV infection can be life threatening and require many weeks of hospital treatment. On the other hand, infections in young adults might cause symptoms for only 2 to 3 weeks.

 

What is the treatment for cytomegalovirus?

There is no specific treatment or cure for CMV infection. Anti-virus medicines can be helpful in treating CMV retinitis in persons with HIV infection.

 

How common is cytomegalovirus?

CMV is common worldwide. An estimated 80% of adults in the United States are infected with CMV. CMV is also the virus most often transmitted to a developing fetus before birth.

 

Is cytomegalovirus an emerging infectious disease?

Yes. Increasing numbers of persons are at risk for CMV infection. Expanding use of child-care centers is increasing the risk to children and staff. Also, the number of people with weakened immune systems is growing because of increases in HIV infection, organ transplantation, and cancer chemotherapy.

 

How can cytomegalovirus be prevented?

CMV is widespread in the community. The best way to prevent infection is to practice good personal hygiene. Wash hands often with soap and warm water. Avoid mouth contact with the body fluids of young children.

 

[Katonsdad]

Thank you for the extra info ....

Strange thing is I have been diagnosed 3 times with Chicken pox in my life .
Thought I was just weird        
Oh well I guess I am

CMV is just a crappy thing to have

Katonsdad

[Romona]

That right! No one knows your own body better than yourself.

How do I find out wether I have CMV or not?

If you had a transplant work up it may have been part of that. After transplant you should have regular testing for it and the BK virus.



EDITED: Fixed quote tag - okarol/moderator

[angela515]

Do "cold sores" have anything to do with CMV?  I have gotten cold sores on my mouth and chin since I was maybe 3 or4.  Not always having to do with being sick.  Case in point, I woke up the other day with two.  One on my upper lip and one just under by bottom lip.  Both small, but they respond to Zovirax.  I've been told "cold sores" are in the herpes family.  Most of the time I get them from distress to my lips like the heater being on and them drying out.  Once I tried to ex foliate my lips with a warm, wet washcloth and I got a cold sore!  Hate them!

Thanks.

Sounds like Herpes Type 1 to me. I have Herpes Type 1, and I get them cold sores as well, I use Acyclovir. I actually take a 400mg pill once daily everyday to keep mine at bay since no immune system.

[angela515]

That right!  No one knows your own body better than yourself. 

How do I find out wether I have CMV or not?

They also tell you at the time of your transplant as well, incase you didn't know before hand. And they also tell you if your donor was positive or negative as well. I was positive, as was my donor, and I was on Valcyte for the first 4-6 months, and then I went off of it.