So... how did you know you were in kidney failure?

This is a question I get a lot, and the easiest answer is "I didn't know". Everybody's body reacts differently to renal shutdown and failure can be chornic or acute. Hopefully for most people it's acute and the likelihood that their kidney function will resume is good. Chronic renal failure on the other hand is usually associated with am illness, infection or disease.

Most kidney trouble starts off with  renal insufficiency which means your kidneys are not able to clear as many waste products and water due to an ongoing or chronic problem. In my case, as I know now, was that I had high blood pressure since the day I was born. I was labeled a hyperactive child and at one point even given Ritalin. Every doctor's visit I can remember growing up my blood pressure elevated but it was written off as me being excitable or stressed because of the office visit.

 Over the course of 31 years,  the uncontrolled high blood pressure I had ended with both my kidneys completely failing and leaving me with what Doctors called end stage renal disease or ESRD.

Okay enough of the who what when where how.

In December of 2001 and went home to visit my family for the holidays. I could barely lift my suitcase let alone climb a flight of stairs. At our family holiday dinner, I was naseous and excused myself several times to go throw up. I knew I would have to return to New York by the afternoon of December 24 as I had a late night flight to work. A supervisor happened to be at the gate of my commuter flight when it arrived. He took one look at me said, "I'm putting you on the sick list, go home and get some sleep." and I did just that.

 

I got home around seven o'clock at night and fell asleep on the couch with the TV on. The next thing I know my roommate, Bettina, is shaking me awake. I remember looking at her and saying, "Wow your home early. Did your trip get canceled?" She replied, "No hun, it's the 26th." I stared at the ceiling and realized I'd been asleep for almost 36 hours. I tried to situp but couldn't feel my legs. I told Betina I need to go to the hospital and she helped me up, to her car, and drove me to the hospital. At the time I was 5'8" and 148 pounds. Looking back I was so thin, that should've been an indicator that something was wrong.

So we get to the hospital and by this time I can walk but I am in an incredible amount of pain. In the emergency room they drew some initial bloods and paged the nephrologist on-call. When my blood work came back, the doctor told me that my numbers were so high that I should already be dead. He was very surprised that I was not in a coma. That's when I realized I was in a coma for almost 36 hours.
I remember very clearly a nurse walking up to me and looking at my chart, and then asking the same questions everyone else had asked me. After I answered her questions she looked at me and said,"You don't look like you're in kidney failure."The symptoms of chronic renal failure are:

Change in frequency of urination with a marked change in color of urine
Decreased urine output with the need to urinate frequently / excessively at night
Bloating up of entire body (face, hands, legs, feet, ankles)
Constant feeling of tiredness, even while relaxing
Skin eruptions combined with severe itching
Loss of appetite
Bad breath
Severe nausea and vomiting
Constantly being short of breath
Feeling cold even in warm surroundings
Feeling of dizziness most of the time
Poor concentration
Pain on the side of the back
Weakness
Headaches
Frequent muscle cramps
Excessive thirst
High blood pressure
Marked paleness of skin and nail color


Out of these symptoms mine included: decrease in urine output, weakness, loss of appetite, and high blood pressure. Some people may exhibit all of the symptoms I've listed, some people may only have one or two. If it's chronic shutdown, it's been going on for a while so you may not notice it until its too late.

It took almost a full 24 hours for the hospital to stabilize my potassium levels before they could perform emergency dialysis but what a world of difference. I felt like a whole new human being after my first session. Wow...was I sick.

Everybody's body reacts differently to renal shutdown and failure can be chronic or acute. Hopefully for most people it's acute and the likelihood that their kidney function will resume is good. Chronic renal failure on the other hand is usually associated with an illness, infection or disease.  Both types can be tested for by a simple urinalysis. If it shows a high level of protein leakage into your urine..then there's more testing to be done.

Thanks for reading and stay tuned.....the next blog will be my hospital stay.....

Red

You mean there's more?

I was working a flight the other day to Los Angeles. Having been with my company for almost 15 years,  I know most of the flight attendants at my base. The majority of them know me from my role of activism and unionism on a local level. Many of them have been through the journey with me from ill health and being at death's door, to the Phoenix rising from the ashes once again to don his F/A wings and get  back on board an aircraft.
This particular trip I was flying was with a lot of people I hadn't flown with before. Most of them had recently transferred to New York from various bases around our system. At the beginning of the flight while I was doing my introductions a few of the flight attendants said, "I know your name". I smiled and wondered. Would it be from the position I held within our Union or was it from the fantastical story of my roller coaster ride with my health issues.
It was abit of each.
One Flight Attendant, who had recently transferred in from Washington DC, actually knew my living kidney donor,  Cindy. The other Flight Attendant had transferred from Los Angeles and knew of me from a very vocal position as a Union Rep.

At the end of her five hours and 41 minute trek to Los Angeles we decided to get together in the bar of our short  layover hotel and have a happy hour glass of wine. We talked shop and then the questions came out about my transplant.
To tell the full story of the transplant, I can't just tell about the transplant. It always leads into other questions that people have. One of them that I get very often is how did you make it through all this?
My answer is simple; I considered the alternative unacceptable.

My story as I told it originally on this blog back in November of 2010, is a compacted version of the events that happened. It was my first attempt to get it out to any kind of a readership to start to tell my story. It wasn't until this last trip that I realized I needed to tell each individual part of the story because they all have such amazing facets, drama and emotion.  My crew, even into the next day returning home, stated that after hearing my story and everything I'd been through, it really made them look at life a different way. And that's what I want.
Over the next several weeks here and there, I will detail specific periods of the past nine years of my life and what I went through in detail and how it helped me stay alive.

stay tuned my friends, there is more to come...


Red

Hooray! Our Government isn't cutting AIDs programs budgets!

 

Hey Folks,

For those of you who are not aware, HIV medication can cost in the thousands on a monthly basis. Many people on a low income cannot afford the treatment even with insurance and a co-pay. My personal co-pay is over $400.00 a month and that is just the HIV meds. 

I thank the baby Jesus that someone in the government listened to our AIDS lobbyists.

Follow the link to read more!

Best in health!

Red

Even though our Government has been on the brink of shutdown, it's nice to know that when they got down to it......they didn't cut us out! The following article was posted on POZ.com. Enjoy!

April 12, 2011  Massive U.S. Budget Cuts to AIDS Programs Rejected; ADAP Funds Increased  U.S. Congress and the Obama Administration have rejected many of the proposed budget cuts to domestic and global HIV/AIDS programs, according to The AIDS Institute. In fact, the final federal spending bill proposes to increase funding to the AIDS Drug Assistance Program (ADAP) by $48 million and rejects a federal and D.C. funding ban on syringe exchange programs. The final bill does cut research funding at the National Institutes of Health by about $300 million and to the Centers for Disease Control and Prevention by $730 million, in areas to be determined. The Hill also reports that contributions to international institutions (including the United Nations) were cut by $377 million, and two programs under health care reform—Consumer Operated and Oriented Plan and the Free Choice Voucher program—were defunded. Earlier reports from the House Appropriations Committee indicated more than $1 billion in cuts to HIV and disease prevention programs, but according to the AIDS Institute, that was an error.

Article courtesy of POZ.com

http://www.poz.com/articles/AIDS_Funds_Increase_1_20218.shtml

NY TIMES ARTICLE TODAY ....MORE HIV+ TRANSPLANTS AHEAD?

In the New York Times today under the health section, Pam Belluck wrote an article entitled a "New push to let HIV-positive patients except organs that are infected".

This is a subject that is near and dear to my heart having been part of clinical trial at Mount Sinai Medical Center to change the protocol that allows HIV+ patients the ability to receive transplants at all.

Any of you who are reading this know that this blog started out detailing my journey from kidney failure for transplantation and the hurdles that I had to jump over to be a healthy individual living with HIV.

It hasn't been easy, and it was a constant fight. There are some that don't agree with my BLOG and have even reported me to Facebook as being "spammy or abusive" so I can no longer "share" my posts.

There are still difficulties with HIV+ transplantation, but two years and 10 months later I stand as a symbol of how can be when it goes right.

As I stated in my first blog in November 2010, sometimes it's a battle to stay alive while we wait for the people who make the decisions to say, "Hey....I think we can!" Well, much like my journey, it appears that the medical community is deciding to take the next step and I applaud them for that. Previously when someone died of complications due to HIV, whether they were an organ donor or not, the organs were not donated. Nor could an HIV+ person donate an organ to a friend,partner or loved one because of their status. This has eliminated the choice, which I believe to be up to the individual, for hundreds of thousands of men, women and children living with HIV and other serious illness.

In 1988 when many of us infected with HIV were dropping dead from what was then termed G.R. I. D., ( Gay related immuno deficiency, our government passed a law that effectively banned anyone who was HIV+ from donating there organs. Times have change since 1988. This law however has not. There are groups and institutions begining to see that this law needs to be lifted if we are to make very viable advances in those living with HIV.

It is very encouraging that the medical community is moving on and forward.  I may need another transplant in the future and if this trial is a success.......maybe the list won't be 7-10 years like it has been.


Please feel free to read the article. It is a great read and thank Pam.....I appreciate it!

http://www.nytimes.com/2011/04/11/us/11hiv.html?_r=1&scp=1&sq=New%20push%20to%20let&st=cse

Be well, and never give up hope!

Red

Facebook posting led to kidney donation

Roxy Kurze gives husband Jeff a kiss.

By Suzanne Choney
Two men who met briefly a year earlier as salesman and customer became bonded for life because of a wife's Facebook posting seeking a kidney donation for her husband.
Roxy Kurze was desperate to find a kidney donor for her husband Jeff, 35, and posted a notice on Facebook seeking someone willing to do so who had blood type O.
The Michigan couple knew they faced a three- to five-year wait by going the usual route of being on the hospital's waiting list. And Roxy Kurze knew that time was of the essence. Her husband had already suffered a stroke, and dialysis was leaving him physically depleted.
"Wishing a kidney would fall out of the sky so my husband can stop suffering," Roxy Kurze wrote on Facebook. "So if anyone knows of a live donor with type O blood, PLEASE let me know."
Ricky Cisco, 25, didn't know Jeff Kurze by name. But he knew Roxy only slightly, through a work-related Facebook "friending" that might as well have been as distant as Mars. At his computer, on Facebook one day, he saw her posting for a Type O donor and was intrigued. He was Type O.
"It wasn’t until I researched it and realized that every day that I drive to work, I’m risking my life far more than by donating a kidney. That kind of reassured me ... once I found out how safe it was, there really wasn’t any excuse to fall back on."
He contacted Roxy Kurze, and met Jeff — for what turned out to be the second time. Jeff Kurze had sold him a laptop about a year before. And he was stunned that Cisco was willing to donate a kidney, "to step up out of the blue."
"I didn’t believe it. It was hard to breathe. I was in total disbelief that this was happening," said Kurze, who celebrated his fifth wedding anniversary with Roxy last month.
"I always wanted to be a hero, but I’m not very strong," said Cisco, who runs a makeup studio. "I can’t lift anything; I can’t save people in traditional ways. I do have an extra kidney, so it worked out good."
It worked out more than good. On March 30, the kidney transplant was done at Beaumont Hospital, Royal Oak in the Detroit area. In a video made by the hospital two days before the surgery, Kurze and Cisco recount their story.
The two men are more than Facebook friends now; "We’ve become friends through this and hang out a lot," said Kurze. "We probably see each other once a week."

Congratulations Jeff......Hearing stories like this give us all hope! And thank God for your "Angel".

Red

Landlords Can’t Evict HIV-Positive Tenant, Support Dog

April 6, 2011

The Massachusetts Commission Against Discrimination (MCAD) ordered landlords to pay $25,000 for trying to force HIV-positive tenant Richard M. Blake to get rid of his emotional support dog or move out of his Brighton apartment, The Boston Globe. Blake’s landlords gave him permission to get the dog, but two months later they added a no-pet policy in tenants’ leases. Blake’s doctor recommended a support dog to improve his mental and physical health and overall quality of life while living with HIV. Blake filed a complaint with the MCAD when his landlords wouldn’t accommodate his disability.

Isn't it nice to know that protections still exist and that we little guys win now and then?

Congrats Richard......and your furry friend too!


Red

Study Shows High Satisfaction and Success With Internet-Based HIV Care

A group of HIV-positive people who received their health care via the Internet from a Barcelona HIV clinic felt that their care was comparable with—and potentially superior to—standard in-person care. These findings, published January 21 in the online journal PLoS One and reported March 21 on the website Computerworld, could offer hope to select patients in rural settings who must often travel great distances to receive specialty HIV care.

By necessity, providers in resource-poor nations have been quick to adopt electronic communications as ways to provide health care. In countries where people are sometimes more likely to have access to a cell phone than running water or transportation, and where they must sometimes travel 100 miles or more to see a doctor, “e-medicine” has significantly expanded the reach of traditional health care.

Developed countries, including the United States, have been much slower to adopt these new technologies, partially because of concerns that e-medicine would result in poorer care, along with legal concerns about patient privacy. Recent positive experiences with using the Internet and telephones to extend and improve care for people with chronic diseases, such as diabetes, are beginning to tear down the walls that have kept e-medicine from wider implementation.

To determine whether e-medicine could be used in caring for people with HIV, Agathe León, MD, from the University of Barcelona, in Spain, and her colleagues set up a virtual hospital system in 2005 to help streamline care for patients in their HIV clinic. During the first two years of operation, León’s team tested its Internet-based system involving 83 HIV-positive people who were in stable health and had CD4s over 250. The study did not require participants to have an undetectable viral load or to be on antiretroviral (ARV) therapy—though about half were. All participants had a home computer and broadband Internet access.

Over the first year of the study, half of the group received their HIV care, pharmacy consultations, psychological care and appointments with social workers over the computer, while the other half received traditional in-person service. After one year, the groups switched their mode of receiving care. Participants went into local laboratories for any necessary lab work.

León’s team conducted detailed surveys of the participants throughout the study to assess their satisfaction with the care, their psychological health and their quality of life. Each participant’s CD4 count and viral loads were also recorded.

León and her colleagues found that patient satisfaction was high and that overall health and well-being—including CD4 counts and viral loads—were no different between those receiving care through the virtual hospital and those being seen at the clinic. This held true despite the facts that 7 percent started antiretroviral (ARV) therapy during the course of the study and 28 percent switched therapy. In fact, 85 percent reported that the Internet-based system actually made it easier for them to access the care they needed from their providers.

León reported that 200 people with HIV have now been followed through the virtual hospital.

“This program allows patients to continue their treatment without altering their routine. Medication is sent to their home, or other locations specified by the patient,” representatives for León’s clinic stated. “Telemedicine is emerging as a service appropriate for this treatment, and [the virtual hospital] as a safe and effective tool.”



Article compliments of POZ.com

What causes Kidney Failure

One of the number one questions that I get asked almost all the time is how do I go into kidney failure? what caused my kidneys to fail? was there any signs or symptoms that told me it was coming on?

I'll try to answer some of these questions in my blog today.

To understand kidney failure you first have to understand what the kidneys do. The kidneys monitor body fluid along with the concentrations of sodium and potassium and the acid base balance of your body. They filter waste products of body metabolism like urea from protein and uric acid from DNA breakdown.

When blood flows into the kidney centers in the kidney decide how much water to turn into urine as well as with what concentration of electrolytes. The best example to use if the person is dehydrated from exercise or being ill the kidneys will retain as much water as possible and the urine is very very concentrated. When you're extremely hydrated your urine is more dilute, nearly clear. the kidneys also are the source of erythropoietin, a hormone that stimulates your bone marrow to make red blood cells. Most people are familiar with EPO from its extensive coverage in the media as a performance-enhancing drug.

Now that we know what the kidneys do hear are some of the reasons kidneys fail. Kidney failure can be chronic or acute. Low blood flow due to loss of blood, dehydration, and various medications can all cause a slowdown in renal function. Sepsis, the body's immune system being overwhelmed by mass infection, can shut down the kidneys.

The most common causes of renal failure are uncontrolled diabetes and uncontrolled high blood pressure.

In my case I have had high blood pressure since the day I was born.

Were there any symptoms or signs? Yes there were. But I didn't know it at the time. The first was the dark circles under my eyes which developed at around age 15. Also in my late teens it was not uncommon for me to sleep 10 to 12 hours a day. This is not abnormal for a teenager but continuing into my 20s it should have been an indicator. Slowly between my 20s in the 30s I became intolerant of certain foods. I could not eat bananas and tomatoes would make me sick. Now I understand it was an overload of potassium in my body. At age 31, I dropped from 165 pounds down 150 and seemingly overnight my strength went away. I could not even left my lightly packed suitcase. Days after my strength leaving me, I was in the hospital in full renal failure. I had an ammonia taste in my mouth but no discoloring of the skin  no discoloring of the whites of my eyes.

The cause and symptoms of renal failure are different for everyone. it is a good idea to have your doctor do a simple urinalysis for protein to determine whether or not your kidneys are functioning as they should.

Be well and remember knowledge is power!

Red

Hope Survives- 30 Years of AIDS with Anderson Cooper

It's been 30 years since HIV received its name. Today a friend told me that this Friday, Anderson Cooper will be hosting a special on CNN called “Hope Survives-30 Years of AIDS”.
Wow! 30 years. That made my mind reel with the implications of what happened over the past 30 years. I'm initially struck by how many people died in the early stages, the mid-to-late 1980s. And then in the early 1990s we had hope with some new treatments. But I still watched one of my friends come to work one day with red splotches on his cheek.
Billy died three months later.

Then there was my roommate Rick. Rick and his partner Jeff had contracted HIV in the late 80's. We buried Jeff the year before Billy and Rick was living every day like it was his last. Making every moment count. Rick hung in there until about five years ago. I still miss him.
And then of course in the mid-90s I was infected. I faced the same fear and shame that everyone else did. Perhaps a bit more, having been negative watching my friends Billy and Jeff die.
I watched Rick, over the years, take medication that would make him so sick he couldn't even go to work waiting tables. Even when I suspected I had been infected by HIV I didn't want to be on those meds...officially I didn't find out until 1999. Yes... I was one of those.

When I finally did find out, the doctor immediately put me on a AZT which laid me out flat on the sofa. We know now that that was because of the kidney failure that was slowly creeping up on me, but still, AZT, what a nasty drug.
When I finally went on anti-retroviral treatment they had added the protease inhibitor's...I was now on a "cocktail" as they liked to refer to it.  I responded much like most people do. Within 30 days I had an undetectable viral load and my T-cell count began climbing.

Since that day in 1999, I have always taken care of myself and looked at life as if it were short. Now I look at it like everyone else does.....maybe I will actually GET to use my retirement. Maybe i'll live long enough to see some more really great things happen. Maybe i'll live long enough to see a cure for this illness.

Join me and watch "Hope Survives-30 Years of AIDS" this Friday night on CNN

Bye for now,

Red

Pro Ball Player Hiding his HIV Status? Sad...very, very, sad.

Roberto Alomar, Steroids and HIV

By The POZ Staff on January 6, 2011 11:28 AM | 5 Comments

By Ian Anderson (President, Smart + Strong)

Is former second baseman Roberto Alomar HIV positive? If so, did he hide his status to engage in unprotected sex with his wife? Yes or no, congratulations are still in order for becoming the newest member of the Major League Baseball Hall of Fame. He was elected to the Hall of Fame after being picked on a whopping 90 percent of the ballots (75 percent is needed to get elected).

He was a 12-time All-Star, won a record 10 Gold Gloves at second base, hit .300 and helped the Toronto Blue Jays win titles in 1992-93. ESPN also called him smart, graceful and acrobatic on the field.

All of the stories about Alomar's induction also cover the players who didn't get in this year because of their ties to the "Steroid Era." These are the players with big numbers and even bigger muscles.

"We are asked to consider character when casting Hall of Fame votes, and I don't believe those who used performance-enhancing substances meet that standard," Susan Slusser of the San Francisco Chronicle said in an e-mail to ESPN.

The only blemish mentioned on Alomar's record? He had an incident in 1996 where he spit on umpire John Hirschbeck. It received a lot of play in the media at the time and was amicably settled in a very public display early the following baseball season.

What is missing from most of the reports I've read so far is any mention of his more recent problems. The one where his wife accused him of hiding his HIV status in order to have unprotected sex with her.

Nothing has been proved when it comes to the case. But as Yahoo! contributor Ron Hart wrote: "The facts include that Alomar has denied the allegations, though did settle one out of court and [did] not countersue for slander...all of which would give anybody pause..."

So at a time when HIV-positive people like Willie Campbell are getting jailed for spitting on people, which has virtually zero chance of spreading the virus, the Hall of Fame voting committee is more worried about who did and didn't use steroids.

On the one hand, it is encouraging that Alomar's HIV status didn't factor into the committee's decision and the media reporting of it. On the other, you have to wonder what will happen if it turns out he is HIV positive--and if that was his status when he had that little spitting incident. 

 

Article Courtesy of POZ magazine!

Red

Strength in Numbers 2011!

Welcome 2011! we've been waiting for you! Especially those of us living with HIV/AIDS. For us and anyone living with a chronic illness, everyday is a battle. First you wake up in the morning, you take a deep breath and open  your eyes, and stretch and you realize you made it to another day. There may be pain, there may be sorrow, and there will most certainly be fear, but there will also be joy, laughter, happiness and love.

Sometimes it's very hard getting through the holidays living with a chronic illness, HIV/AIDS is not alone in that fact . I belong to a social group called strength in numbers, SiN for short. It is a health and wellness social group through Yahoo groups. It was founded on the idea of sero sorting. Basically that means that we date within our own community of HIV-positive people ensuring that we are not spreading the disease, even by accident. It has turned into a huge social network of fun and support for those of us living with HIV/AIDS. I receive daily e-mails from the group about functions, support groups, yoga classes and other fun events. For instance every year our group plans a trip to the Disney gay dayz and twice a year there is a group of us that get together to go on a cruise. While not specifically an HIV-positive cruise, nevertheless it is a group of like-minded men and women who are generally together to support and nurture each other.

Sometimes along the way you're lucky and you meet someone you fall in love with. It happened to me in the most unlikely person I could think of. Unfortunately while we love each other very much were not good together and this New Year's Eve, while I couldn't be with him, I raised a glass to him thanking him for reminding me what love was.

Yesterday, New Year's Eve 2010, I got an e-mail that was very down and sad from somebody within my SiN group. While I love to write and I'm finding it a great talent that I have, I still am uncomfortable being in the public eye. I don't usually respond to group emails, but I couldn't stand by and say nothing while this person was obviously hurting. There may be others out there feeling the same way. So I sent an e-mail to the entire strength in numbers group in New York City. Here is what I said:

"Hi Everyone,

I see a lot of people lately that seem to really be down about the holidays.....I know this can be a really tough time for a lot of us. Me...I feel a bit down sometimes too, and this New Years I cant be with the one I love....

BUT.....WE woke up this morning! WE get to see the dawning of a new year!

WE are alive.....so even though there seems to be a lot of emotional turmoil over the time, (feeling it myself included) I prefer to focus on the fact that WE have all survived another year and that means WE will all be there for each other in the coming year.

So to all of you.....my brothers in SiN

HAPPY NEW YEAR.......lets make it great together"

So no matter what illness you're dealing with, just know that you're not alone. And when those days of depression creep up on you, and they will, remember you got to wake up today!

For more information on Strength in Numbers please visit your local SIN website....they are listed all over the world as SIN<city name> ie: SINNYC, and here is a website for the organization.

http://www.strengthinnumbers.org/

So WELCOME 2011! We greet you full on, chest held high, ready to see what you hold!

By for now.....

Red