Thank you! Still time to Give HOPE through Research!

FundaCureHuge thank you to everyone who have already donated to the Cystinosis Research Foundation to help Give HOPE through Research!

It means so much to me! I realize that it was during a weekday and that not everyone who wanted to attend was able. Therefore, there is still time to donate! Go here to: DONATE

If you also were interested in hearing other cystinosis patient’s stories please watch the youtube video below of Tina’s story.

If you were quite interested in what I was going to say in my little speech you can check that out right bellow!

599457_111877858954314_119659440_nMy name is Mika Covington; I’m 23 years old and hope to live 23 years more. I was diagnosed with cystinosis around age 10 months old. Cystinosis is a rare “orphan” disease that causes that amino acid cystine to accumulate in the cells. As the cystine accumulates in the cells, it slowly damages organs including the kidneys, liver, thyroid, eyes, muscles and brain. An orphan disease is a disease that has not been “adopted” by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it. Almost 7,000 rare or “orphan” diseases in the United States collectively affect nearly 30 million people. In the case of cystinosis, only 2,000 in the world are affected.

Cystinosis has been a struggle. It has been a challenge for me and those who are about me. Yes, I maybe a so-called survivor; however I’m living with it every day. When I was a kid, I was always seen as different. Every day, I went to the nurse’s office to take medications. Many days, I had bad breath and body order from the Cystagon, and I felt sick to my stomach that usually ended in me vomiting. Elementary and middle school were especially difficult for me because of this. Not to forget all of the doctor appointments and hospitalizations I had to go to which caused me to frequently miss school. Growing up with cystinosis is difficult and quite the journey.

Cystinosis has been difficult on my family, too. I cannot even comprehend how heartbreaking it must have been for them to get the news that cystinosis is an incurable disease. Then, to see me go through all of the hospital visits, side effects from the medications, and just daily life with cystinosis. However, I am proud because I am one of the only cystinosis patients to make it to 19 years old before needing a kidney transplant.

In 2010, my senior year in high school, I turned 19 and lost my health insurance. This happened because in Nebraska, you are an adult at age 19 and you must re-apply for Medicaid. I did just that and I was denied. I was told that I was not eligible for coverage for having a pre-existing condition (the cystinosis). I tried applying four times with the same results each time. With no avenue to appeal their decision, I decided to focus on graduating high school and going to college until my scheduled trip to the National Institutes of Health that fall. I went most of that year without any of my medications. this resulted in me going into end stage renal or kidney failure and it probably cut a few years off my life. I went from needing a kidney transplant in 2-4 years to needing one in six months to one year. If I would have had health insurance, I might have been able to wait until after college to get a kidney transplant.

International Day Against Homophobia and Transphobia Rally
International Day Against Homophobia and Transphobia Rally

When I graduated from high school, I knew I wanted to contribute to society in any way possible and work to create the change I seek. However, because of having cystinosis and going on dialysis, it forced me to stop working. To stay busy, I volunteer on issue and political campaigns, such as fighting for Full LGBT Equality, voting rights, and health care for all. I am passionate about these because I look forward to a future where everyone has the right to vote, has full and equal human rights, and access to high quality health care. For me, these causes are important because I know first-hand how not having access to health care can cause a chronic disease to get worse like my disease did.

I was on dialysis for almost three years. I began dialysis in May of 2011, when I was a patient at the University of Nebraska Medical Center (UNMC) being evaluated for kidney transplant. I first was on hemodialysis, a form of dialysis that is performed with a catheter placed in the chest that is used as an access to cycle large amounts of blood into a machine that cleans the blood and returns it to the body. Fortunately, I was only on this form of dialysis for nine months, until I switched to peritoneal dialysis.

I started peritoneal dialysis in March of 2012, because I was denied getting a kidney transplant at UNMC from my living donor and would need to be on dialysis much longer, in addition to hemodialysis not working out for me. I had many complications with hemodialysis and cystinosis. For example, cystinosis patients are not your typical kidney failure patients because we still need access to water and potassium. This is why our specialists recommend having the kidney transplant as soon as possible. Most health care professionals are not fully educated on cystinosis. Therefore, cystinosis patients like me must take it upon us to help educate our health care professionals.

 554643_454772334563780_354924217_aEven with the additional education sometimes, mistakes are made. While I was on hemodialysis, it caused me to continuously become dehydrated, have hypotension (low blood pressure) and tachycardia (fast heart rate). In addition, I had other complications like the catheter itself falling out of my chest and a couple of times where there were infections. By the end of the period of me being on hemodialysis, I had seven hemodialysis catheters placed in my upper right chest. I can show those afterwards. 

Peritoneal dialysis is performed using a catheter placed in your abdomen that cycles a dextrose mixture fluid into your peritoneal cavity that uses the wall of the cavity as a natural dialyzer that cleans your blood. Peritoneal dialysis was much better for me because I was able to better control how much fluid I take off my body and my health care was more in my own control. It also was done at home. This way I did not have to go to a dialysis center. It gave me more of my life back. I was on peritoneal dialysis until May 30, 2013, when I received the Gift of Life from my living donor. I had the kidney transplant at the wonderful University of Iowa Hospitals and Clinics (UIHC), in Iowa City. At UIHC, I received excellent care and compassionate treatment. I personally feel they are the best in the Midwest. 

Today, I am living with a new kidney, which I named Serenity after the ship on FireFly a scifi show, and doing wonderfully in aspects of my kidney health. The transplant team at UIHC was impressed with how well my body accepted the kidney and recovered from surgery. My creatinine level, which determines how well the kidney is doing, is 0.9. This number is awesome! You don’t always see transplant patients do this well at this point post-surgery! Even my incisions are healed so well you can hardly see them. I can show those to you afterwards too! I am now down to only having blood draws once every other month to check my levels and only need to visit UIHC once a year. 

Currently, I am not employed because even though my kidney issue is resolved for the moment. I still have cystinosis; remember it affects my entire body. Because of cystinosis, I have Fanconi Syndrome, where I constantly must fight the loss of water, important minerals, salts, and nutrients. I have issues with my eyes being extremely sensitive to sunlight and light in general. I also have some issues with my heart and frequent headaches. This all leads to a lot of stress and still feeling sick. 

I must point out, I don’t only have cystinosis. I have nephropathic or infantile cystinosis. There are three forms of cystinosis: nephropathic (infantile), late-onset (intermediate), and ocular (adult). The most common and severe form is nephropathic cystinosis. Patients with nephropathic cystinosis appear normal at birth. However, before one year of age have excessive thirst and urination, and failure to thrive. They are smaller than others are their age and often tend to be in the lowest percentile or even off the pediatric growth chart. There may be delays with walking and bearing weight. With late-onset cystinosis, kidney symptoms typically become apparent during adolescent years. With ocular cystinosis, cystine crystals are present in the eyes but kidney function remains normal. 

Fortunately, we have the drug cysteamine to slow the progression of cystinosis by removing the cystine from the cells. There are two forms of cysteamine Cystagon and Procysbi. The FDA approved Cystagon for the treatment of cystinosis in 1994. Cystagon must be taken every six hours, every day. I was on Cystagon during the trial and had been taking it for nearly 21 years of my life. It caused me to feel sick almost every day. 

Last year, the FDA approved Procysbi, a delayed-release capsule for the treatment of only nephropathic cystinosis in adults and children 6 years and older. I was lucky enough to start Procysbi about four months ago and I have nearly no side effects from the new form. There is only one medication to treat the corneal cystine crystal accumulation in patients with cystinosis, Cystaran. Cystaran must be used every hour while awake in order to remove the cystine crystals from the cornea. Patients who begin cysteamine treatment early enough, and are compliant in taking cysteamine as prescribed, generally delay the need for kidney transplantation for several years. 

250px-NIH_Clinical_Research_Center_aerialWe must find a cure. Thus, I am participating in a long-term clinical research study at the National Institutes of Health (NIH) in Bethesda, Maryland. In the study, I see Dr. William Gahl, one of the leading researchers in the world on cystinosis. Dr. Gahl’s study was one of the first studies of it’s kind on cystinosis. I currently see him for the specialized study of the progression of the disease in my body and to aid his research in the long-term effects of the disease, which I hope will assist in finding a cure. I began seeing Dr. Gahl when I was a baby, shortly after I was diagnosed with cystinosis. I spent several weeks at a time there. Basically, I grew up there from 1992 to 1996.

In addition, I have participated in several other studies, including at the University of California at San Diego Medical Center, where they studied the neurological and psychological effects of cystinosis. I was also a participant in the study at the NIH, which proved to the FDA that the eye drops work to reduce the cystine crystals on the corneas. 

Today, I am here raising funds to help find that cure for my terrible disease. The money raised here will go directly to the Cystinosis Research Foundation (CRF). CRF is a non-profit 501(c)3 organization that was started by the amazing Stack family in 2003, after Natalie Stack their daughter, made a wish on the eve of her twelfth birthday, “to have my disease go away forever.” CRF today supports bench and clinical research that is focused on developing improved treatments and a cure for cystinosis. 

CRF has funded every bench and clinical research study that lead to Procysbi, allowing cystinosis patients like me to take the drug every 12 hours instead of every 6 hours, which greatly improves our quality of life. They established the CRF Cystinosis Gene Therapy Consortium, whose mission is to bring stem cell therapy to clinical trial. The CRF is currently funding investigators in eleven countries. Some of the areas of focus include stem cell and gene therapy, effects of cystinosis on neurological function and cognitive development, causes of muscle-wasting and potential therapies, etc. 

Finding a cure may save my life, as well as others with cystinosis including my sister Mary, or even persons with other diseases. Knowledge discovered by studying one “orphan” disease often leads to advancements in other diseases. 

Can I count on you to join me?

Go here to donate online: Fund a Cure 4 Cystinosis 

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Mika’s Cystinosis

SAMSUNGAt age ten months, I became very ill and was rushed into the emergency room (ER). The doctors diagnosed me with dehydration and failure to thrive. In the following months, I went through many tests including bone marrow taken from my hip. The doctors concluded from these tests that I had Nephropathic Cystinosis. This was a very scary moment for my family, they had no idea what Cystinosis was.

Dr. Gahl at NIH
Dr. Gahl at NIH

I owe my life to Dr. William Gahl from the National Institutes of Health (NIH). I began seeing him in 1992. Dr. Gahl shortly before meeting me he discovered that Cystagon and some other medications are successful in treating Cystinosis. I started the Cystagon treatment in 1992, during my first visit to the NIH. It is because of his research and those medication that I am still living. The first group of doctors, I saw at the University of Nebraska Medical Center were useless, they told my parents that they did not believe I would live to be six years old because they didn’t wish to go out of their way to really figure out what was wrong with me. Nevertheless, they were right, if I would not have started the Cystagon I would have died.

Cystinosis has become part of my life. Cystinosis had done many great things for me. I look at Cystinosis as some sort of tool. I have been able to educate myself on many things that most people do not understand because of this illness. I understand most if not all of what many of my medications do and how they work. I understand what Cystinosis does and what Cystinosis is; I know the many different functions of the body especially the kidneys and what levels should be. I am able to travel to many different places. For instance, I go to the NIH once every other year, which is located in Bethesda, Maryland just outside of Washington, D.C. It has given me the opportunity to travel to California where I took part in a psychology study in San Diego. Cystinosis has also made me become more mature then many people my age and thus, I look at the world much differently.

250px-NIH_Clinical_Research_Center_aerialNonetheless, there are many negative aspects of living with Cystinosis, such as I have been to so many hospitals that I have lost count of them. The hands of so many medical professionals have touched me, which has led to me trying to tell them what to do, when they draw blood and start IVs. I have had so many different scans and X-rays that now, I have been exposed to more radiation then an average Iowan. I also take many different medication, which have many different side effects. Some of those side effects including vomiting, diarrhea, headaches, and bad breathe. Thus, the medications are another negative aspect of Cystinosis. But, I guess the most negative aspect of living with Cystinosis is that it will eventually kill me. 

Today, living with Cystinosis is much easier because I finally after 3 years of waiting and the first transplant center refusing to do the transplant after scheduling it twice in the same year, I got my kidney transplant. I am doing much better and continue to improve. I owe that to the University of  Iowa Hospitals and Clinics and Dr. Reed who did my kidney transplant. Oh and I guess Jon the donor. But, he didn’t have a huge roll in it, he only had to lay on a table and give up his kidney. Thanks Jon!

The following are graphs of my blood levels post kidney transplant. 

Creatininelevels

Potassiumlevels

Hemoglobinlevels

BUNlevels

WBClevels

PlateletCountlevels

 

My Journey with Cystinosis & I am a Survivor

Here I am in the hospital sick because I have Cystinosis!
Here I am in the hospital sick because I have Cystinosis!

I am Mika Covington, I’m 22 years old, and I have Cystinosis. I was born with this disease and diagnosed around age 10 months. Cystinosis is a metabolic disease that causes cells to crystallize causing early cell death. This happens because amino acid cysteine gets into the cells, but has no transporter out. Cystinosis slowly destroys the organs in the body including the kidneys, liver, eyes, muscles and the brain. Cystinosis has always been a struggle for me and my family and friends. My disease has caused a lot of trauma to myself and my family and friends. I know that it must have been very difficult for my family to learn that their child has an incurable disease that will eventually take their life. I personally cannot comprehend how they could have handled getting that news.cistinosis_-432x300

My family first learned of my disease from the University of Nebraska Medical Center (UNMC) Nebraska Medical Center where they took me to try to figure out what was going on with me. Before they took me to the UNMC they took me to many different hospitals in the Omaha Metro area. UNMC was the one to diagnose me with Cystinosis because one intern happened to read an article talking about a mysterious disease. Nevertheless, at the time UNMC did not know exactly what to do with me and said that they did not think I would live much longer then about 6 years old.

250px-NIH_Clinical_Research_Center_aerialLuckily, because of that intern my family heard about the trial going on at the National Institutes of Health (NIH) in Bethesda, Maryland with Dr. William Gahl. During the trial, I started taking oral Cysteamine four times a day, and later I began doing the Cysteamine eye drops that are taken every hour while awake. Moreover, of course many other medications for all the different problems that come with Cystinosis, like low sodium, potassium, phosphorus, protein, and excessive thirst.

Now, I would like to fast forward to when I started dialysis because I finally went into end stage kidney failure (ESKF). I started dialysis at the end of May in 2011. I first started on hemodialysis. Hemodialysis is a form a dialysis that is usually done with a cardio catheter placed in the chest that is used as a port to cycle blood into a machine that cleans the blood and returns it. If you are doing a long-term hemodialysis, a surgeon will create a port in your arm or leg called a fistula or graft to do dialysis. It is kind of like creating a thick vein to use to access the blood. I personally was on hemodialysis for a little over a year and then switched to peritoneal dialysis. More on that later.

However, before I started hemodialysis in 2011; I was being worked up at the University of Nebraska Medical Center (UNMC) Lied Transplant Center to get on the waiting list for a cadaver kidney (dead person kidney). I did pass all of the tests and was placed on the list as of March 2011. Then I started to look for living donors. I found Jon von Kampen who happened to be a match. Therefore, we set up a surgery date but eventually were unable to do the transplant at the UNMC Lied Transplant Center.

PD Cycler
PD Cycler

Therefore, I would be on dialysis longer and I did not like or do well on hemodialysis. That is when I concluded that maybe peritoneal dialysis would be a better choice for me. Therefore, in February of 2012, I was set to have a PD catheter place in my abdomen. Then in March of 2012, I started peritoneal dialysis. This form of dialysis was the best for me. I got many parts of my life back and was able to become more politically active once again. I liked it a lot. I also felt better on PD.

My journey would soon take a major turn. The summer of 2012, I met Amber Tracy a Field Organizer from Organizing for America (OFA) or the Obama Campaign. She invited me to a couple of events she was holding at the college I was attending for political science and psychology. After she became to know me a little more and all of things I was doing and active in. She recommended 398777_10150940759848430_1366498105_nthat I apply to become a Summer Fellow (intern) at OFA. I agreed that would be fun and a great learning experience and so I applied and came to Council Bluffs, Iowa to first volunteer on the campaign until I was accepted and interviewed for the position. Once, I was accepted, I began doing a lot of work to elect the President. I organized house parties and other events like our Equality night. I made many calls talking to voters about what President Obama has done for the State and me and why they should consider voting for him. I also had the chance to go to Des Moines, Iowa to see the President of the United States of America speak to a crowd of supporters at the Iowa State Fair Grounds where I was able to stand on the stage behind the President. During this entire time, I was doing Peritoneal Dialysis four times a day. The Obama Campaign even arranged for me at the President’s event to get dialysis done before he spoke. They were so considerate of my condition and me.

University of Iowa Medical Center
University of Iowa Medical Center

During my time in Council Bluffs, Iowa working with Organizing for America (OFA), I started looking into the University of Iowa Hospital and Clinics (UIHC) to see if I could possibly get on the transplant list there and maybe get a live donor kidney transplant. I did a bunch of research on the hospital and their transplant team and then I finally decided to call them and get a packet of information and paperwork to fill out.

In September of 2012, I was set to go to Iowa City, Iowa to be worked up at the UIHC Transplant center to see if I could be placed on their transplant list. I did pass and was placed on their list the following month, then set out to find another living donor. I sent out about eight packets of information to people who expressed an interest in donating their kidney to me. Out of the 8 packets only 3 where returned and only one was chosen to come to Iowa City, Iowa to be worked up to see if they were a match. That donor was a match but was eventually denied by the committee to donate and so I had a choice to make, send out more packets or see if Jon was still interested in donating.

Luckily, Jon von Kampen was still interested in donating his kidney to me. So, he filled out the packet and sent it in to the UIHC Transplant Center. They immediately saw that he was a match because he was the original donor when I was at the UNMC Lied Transplant Center. Within a month or so Jon was called and asked to come to Iowa City to the UIHC Transplant Center to have some tests done to make sure he was still able to donate. Later of course, Jon was ruled able to donate his kidney and so they scheduled the transplant for May 30, 2013.

Last month, Jon, I, and our families went to Iowa City, Iowa to the University of Iowa Hospitals and Clinics (UIHC) Transplant Center to have the kidney transplant. We arrived at Iowa City a day before our pre-operative appointments because it is about a 4.5-hour drive to Iowa City. We both passed all our tests well and went back to hotel to wait until 5am the next morning to go in to have the surgery.

10250On the morning of the surgery, we all had to get up very early in the morning to get to the hospital by 5:30am, Jon’s surgery was scheduled for 7:15am, and mine would be about 20 minutes after. My surgery took about 5 hours to finish.  The staff at UIHC was wonderful to both Jon and I. Once I was moved to stage 2 right before they took me to the operating room the family started taking photos of me while I was waiting. The staff was able to get the IV started very easily. The staff also explained everything to me and I understood what was going to happen before it happened. After the staff explained everything they rolled my bed out of the room on our way to the operating room. They kept me calm and relaxed almost the entire time. When we got to the operating room they started to give me more medications, got me up on the table, and then started to put me to sleep.

After the surgery and after they had me in recovery for awhile, I finally wake up with the new kidney that I named Serenity and Serenity was working very well. Of course though, I was in a lot of pain but I was already feeling much better.  After surgery that night my medical team wanted me to get up by 10:30pm to do my first walk. My goal was to walk every 4 hours and sit in my chair 3 times a day for each meal. I was able to get up and walk at about 9:30pm. It was very painful but doable. This went on for a couple of days and then I was discharged on June 3, 2013.

Me in Pre-op with Diane and family
Me in Pre-op with Diane and family

Now, I am living with full kidney function and I am no longer in End Stage Renal Failure. My incision has finally healed and my health is so much better. Nevertheless, I had to have another surgery to remove my peritoneal dialysis catheter. That surgery was also done at the UIHC by my transplant surgeon. This surgery had some complications because of how the UNMC Transplant surgeon put it in. My UIHC

Pre-op with family
Pre-op with family

Transplant surgeon has never seen a PD catheter placed like mine was so it wasn’t a laparoscopic surgery and they had to keep me over night because of my pain levels. I was discharged the next afternoon and went back to the hotel to rest before we would head back to Council Bluffs, Iowa.

Thus, today I have pain from the two incisions for the PD catheter removal and one of them was left partly open to drain in case of infection. But other than that I am much better but I do sleep a lot and I have been able to decrease the amount of pain killers I am on to about 2 tabs at bed to help sleep more comfortably and fully without the pain. Those two incisions currently have constant pain.

Any questions about my journey or about kidney transplants or Cystinosis feel free to email me at mika.covington@yahoo.com

I am a survivor and there is nothing that can take that away!

I would like to also tell you about how my days go medically.

7am: I take medications

  1. Sertraline 2 tabs – for depression/anxiety
  2. Phospha 250 Neutral 1 tab – for Cystinosis
  3. Mcyophenolate 1 tab – for prevention of kidney transplant rejection
  4. Sulfamehoxazole-TMP-SS 1 tab – for transplant to prevent infection prophylaxis
  5. Rapamune 4 tabs – for prevention of kidney transplant rejection
  6. Prednisone 1 tab – for prevention of kidney transplant rejection
  7. Levocarnitine 2ml oral solution – for Cystinosis
  8. Cystagon (LTD DIST) 10 caps – for Cystinosis prevention of additional organ failure
  9. Cysteamine HCI BAC eye drops one drop in each eye – for Cystinosis to prevent corneal crystal buildup (I try to do these every hour while awake like prescribed)

9 or 10 am: I get out of bed to really start my day

  • I weigh myself and record it
  • I take my temperature and record it
  • I take my blood pressure and pulse and record it
  • I fill all my water bottles (need to drink at least 2 liters of water a day, my doctors want me to drink between 3-4 liters of water a day)

11am or 12pm: Meds again

  1. Levocarnitine 2ml
  2. Cystagon 10 caps
  3. Cysteamine drops
  4. Ondansetron 1 tab – for prevention of vomiting as needed (many of my medications especially the Cystagon make me very sick some days)
  5. Multivitamins
  6. Vitamin D 200 IU

6pm: Meds YAYS!

  1. Mcyophenolate 1 tab
  2. Phospha 250 Neutral 1 tab
  3. Levocarnitine 2ml
  4. Cystagon 10 caps
  5. Cysteamine eye drops

8 or 9pm: I get ready for bed on days that I don’t have any events for LB380 or other

  • I take my temperature and record it
  • I take my blood pressure and pulse and record it

11pm or 12am: Yays meds again!

  1. Levocarnitine 2ml
  2. Cystagon 10 caps
  3. Cysteamine eye drops
  4. Ondansetron

That’s how my days on average go.

Finally, here are some videos that I found that I find moving and inspirational.

Several hours after surgery. Serenity is home!
Several hours after surgery. Serenity is home!
My new Med box with some of my meds!
My new Med box with some of my meds!
All my current meds
All my current meds

Below are pictures of my incisions so don’t look if you might get sick. I cannot be held responsible.

Not too long after the kidney arrived
Not too long after the kidney arrived
Incision one from PD Cath removal
Incision one from PD Cath removal
Incision two where the PD cath use to be.
Incision two where the PD cath use to be.

BREAKING NEWS!!

National Institutes of Health (NIH) visit is over and it was a wonderful visit!! A lot of good memories formed and some really awesome news plus some negative news as well.

I would like to start with the negative news and work my way up to the positive news! Okay so, my Creatinine levels which determine how well my kidneys are working is 8.84. 8.84 is a very bad number. Normal Creatinine levels range between 0.77-1.19. This would indicate that my kidneys are not working very well. In addition, my kidneys are only 5.6 cm and 6.1 cm which means I have bilaterally small kidneys which in turn means my kidneys are not normal size probably due to them not working. Another indication that my kidneys are not doing well would be the issue with there being 2363.0 mg of protein in my urine. Normal protein levels for in urine is 30-150.0 mg per 24 hours. So I have 15x the normal amount of protein in my urine. Not a very good sign. As Dr. William A Gahl said this would all indicate a need for a kidney transplant.

This would explain why I am always sick and vomiting. Which no one here in Nebraska could figure out for some reason.

A little bit more negative news is that I need to have my wisdom teeth removed and I have some gum problems.

Nevertheless, they Dr. Gahl said that I looked very healthy and he was happy about my progress. He was again surprised by how well my eyes are doing. My eye sight is 20/16 which means my eyes are better than perfect! LOL I can read every line on the chart but the very last one or two. Also my crystals on my eyes are better than other Cystinosis patients! That was some really awesome news!!

Some news that is neither good nor bad is that I can lower my Cystagon dose because the damage has been done to the kidneys and that I should work my way back up to 650 dose of Cystagon about 6 weeks after the kidney transplant.

If any friends or family have any additional questions about my health or the results of the NIH visit please facebook, email, or call me.

NIH Visit with a Ray

Well I made it to Bethesda, Maryland on Sunday, on the tiny ass airplanes!!

Our housing was a little messed up and so we had to be transfered to a different building off campus which then took me out of my confort zone so had a little anxiety about that but we got it all figured out! The off campus place is wonderful! Maybe even better the the Childern’s Inn at the NIH (National Institutes of Health).

Monday, was my first day of clinicals at the NIH building 10 which went fine for the most part. Except, security at the NIH west gates tried to tell me that my State Drivers license was not real and that I made a photocopy of it. Which we all know is not ture and that the DL is the temp one they issue you while  you wait for them to send the card one in the mail. I told my nurse about the issue and she had the NIH issue Ray and I both Extended Stay ID’s to use instead so we don’t have to go through that secrurity.

Monday was not the bussiest day. I only had appointments until 12pm. But we had to wait to get our vouchers and to get our IDs then after that we had to wait for the off campus shuttle to take us back to the Woodmout House so I could do dialysis and then get ready to go out exploring some of Bethesda downtown. Which was fun! It started raining on us! Those bitches in the sky running shit!! LOL Well anyways we were looking for a CVS to buy some crap we really didn’t need but yet did. Then we walked back and found Starbucks so we had to go there and get some queer starbucks and support Marriage Equality! BTW people Maryland is voting on Quetion 6 which asks the voters to decide if the state should let the Marriage Equality bill become law or repeal it! So remind you Maryland friends and family to vote yes on question 6!!

Tuesday or shall I say today was fine. I wouldn’t say great but fine. I woke up feeling sick today so that messed up my entire day. Jeez! Today I the bussiest day. I had to drop off my 24-hour pee bag and the women at the desk in outpatient floor 9 told me that I needed to take it down to the lab place instead so I went down there and they told me to go back up so I did. lol the woman was wrong like I told her. LOL. Next I had a little EKG and then I had dental but we had so much time to spare since we were actually early instead of being almost one and a half hours late because of the stupid security people. After all my moring appointments and lunch we had to go up for my eye clinic and there I met both of the other Cystinosis families that were at the NIH this time.

BTW EVERYONE, the NIH clinical trial for my EYE DROPS is COMPLETED!!! The NIH finally got FDA APPROVAL for the EYE DROPS!!  This is just wonderful because it means that I can now get my eye drops from a pharmacy here in the midwest now near where I live or from CVS like my Cystagon. So that was some very good news!

Well that is about it for Sunday-Tuesday/Today. Only other thing is I came back to the Woodmout House and ended up sleepying through most of the Presidental Debate and then go online to share this blog with you all. While on the other hand Ray was ablt to go and explore Washington, D.C. for his first time. I have seen almost everything in D.C. so I just decided it would be best for me to just try to rest some.

I will have another blog out tomorrow after I get back from Bethesda.