Well, this is embarrassing… A lot has gone on since my transplant back in 2013, and I promise to give a recap once I get a chance. For now, I’d like to celebrate Rare Disease Day! This is the post that I put up on Instagram (@j.mura_designs):
It’s #raredisease day! Reading some stories on rarediseaseday.org and came across a young girl’s story about dealing with #MPGN, the same rare disease that I have. I wish I could reach out to people, especially younger people who are dealing with this disease, and let them know that you are STRONG. You CAN do this, you WILL get through this, and like this girl realized later on, that you are HELPING others improve their lives in coping with this disease.
I was diagnosed at the age of 10 and know what it’s like to experience weight gain, mood swings, depression, fluid retention, migraines, sicknesses that last for weeks, numerous visits to the hospital, and the list goes on. It’s not exactly the easiest thing to go through when you’re a teenager and you feel like you’re alone in a never ending nightmare. I never really talked about my disease with a lot of people until I was older, and never mentioned the medications I was taking to my friends or people at school maybe because I was embarrassed? Was worried they might look at me like I’m a freak? Who knows but, luckily, I was fortunate to have the support group that I have in my family, and I had wonderful friends that accepted me for who I was/am.
To all the people in school who treated you differently, who name called you, to hell with them. They should be the people that motivate you to keep going in life, they are the people who have absolutely no idea what you have been through, how strong you are, and that you are someone 10x stronger than they are.
To all my rare disease homies out there, keep on fighting because you are a survivor! Be aware that you are rare and never give up hope. Also, remember to never lose your sense of humor, except maybe when you have a transplant, because laughing too much after surgery can sometimes hurt like a b*tch!
I apologize for putting you guys in suspense (that is, if you ever were in suspense…) but I’ve been recovering from my transplant that I had a month ago. I had my transplant on Tuesday, December 3rd, and since everything was looking good (my creatinine had come down to .08! I don’t think my creatinine has ever been that low, except for maybe when I was 9 or 10 years old) I was discharged from the hospital on Saturday, December 7th. I was SO happy to be out of the hospital and resting comfortably in my parents home (my brother and I stayed at our parents for a couple weeks as they were our caregivers) and to take a long SHOWER. I never realized how much I loved showers until then. I had a wonderful Sunday staying at home, felt pretty good and was moving around pretty well. On Monday, December 9th, I had an appointment at UCSF at clinic, which is a weekly check up on how things are going and to check my blood results that I had done in the morning. My creatinine had gone up to I believe to almost 2 and I had to be remitted back into the hospital that same day. The doctors were concerned that there was kidney rejection so they wanted me to stay in the hospital so they could monitor me.
I remained in the hospital for the next 8 days where I went through Plasmapheresis and was given numerous medications such as IVIG (IVIG is given as a plasma protein replacement therapy (IgG) for immune deficient patients who have decreased or abolished antibody production capabilities), Rituximab (Rituximab destroys B cells and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells.), and Eculizumab (Eculizumab protects blood cells against immune destruction by inhibiting the complement system). In a nutshell, since all of these terms and words are confusing, most of these medications would help stop harmful antibodies from attacking my brother’s kidney.
Eculizumab is a fairly new drug and my doctors had asked if I would be willing to try this new experimental drug. It had been used at UCSF before but only with compatible blood type transplantation. My doctor mentioned that I would be the first to try this drug at this hospital, who has had an incompatible blood type transplant. I asked him what the side effects would be and he mentioned a whole bunch including Meningitis. I was like wonderful. But they said it rarely happens and I thought to myself, what other choice do I really have? After researching Eculizumab and learning more about it, I found nothing but positive results (Except for maybe the 6 figure cost per dose. Luckily my insurance covered it). So we went ahead and did the first dose of Eculizumab which is through an IV and lasts about 30 minutes. I have to admit I was a little scared and concerned about what would happen to me regarding the side effects. I waited, and waited…. luckily, all I experienced was a flushed face. Thank you Buddha.
After 8 days of drugs, plasmapheresis, remembering to pee every hour during the day and every 2 hours at night (this is important because if the bladder becomes too full, it might risk the chance of having the incision in the bladder from the new kidney burst open causing complications), biopsies, and being poked at 4:00 AM every morning for blood work, I finally came home on Tuesday, December 17th. Since then, it’s been mostly blood work twice a week and plasmapheresis.
Everything has been looking up since then. My creatinine is stable at around 1, and my titer count is not too high. Hopefully, within the next couple of weeks I can stop Plasmapheresis completely, and have the catheter in my chest removed (it would make showering that much more enjoyable, but hey, I’m not complaining, I’m so happy to take a shower in the comfort of my own home, in my OWN shower). I couldn’t be happier that my brother is doing so well. He still gets sore from time to time but usually after a long day of moving around. I’m pretty much the same way, but am moving around pretty well.
I hope things continue to be positive and my body accepts my brother’s kidney more and more. For now, since I’m on so many immunosuppressants, I have to remain in an imaginary bubble, as I’m more susceptible to getting sick. Guess that leaves me plenty of time to start planning for our wedding (ai yai yai).
Today is Tuesday, December 3, 2013. Transplant Day. As I wait in my room with my fiancé, I think about how lucky I am to have such loving and supportive people around me. Although, I have told my fiancé, Scott, to go home, instead of staying here over night, he is too stubborn and won’t listen to me. I told him he won’t get any sleep, especially tonight because it is a critical time where nurses will be in and out of our room often to check on me. But, he insists and I can’t complain… I’m just grateful to have him by my side.
Thinking positive thoughts, wish all the best for my brother, my hero, who has sacraficed a great deal for me… I only hope I can repay him back in some way, and I’ll sure as hell try my best when I see him again and with him literally being a part of me.
In the past 3 weeks I have been busy with my Plasmapheresis and getting everything scheduled for my transplant today. Unfortunately, the last two treatments out of the 6, seemed to not have done much in lowering my titer count. If you don’t like blood, I suggest you don’t look further into this entry.
These pictures aren’t all that bad to me but I know some of my friends can’t stand the sight of blood. These are a few pictures from my Plasmapheresis treatments. A catheter was inserted on Friday, October 25th… probably not the most fun I’ve had, but it wasn’t too bad. My neck was just really sore after they inserted it and sleeping was a bit difficult the first couple of nights. Felt like someone punched me really hard in the neck. After 3 treatments, my neck seemed to be pretty much fine and the treatments are pain free.
My fabulous fashion statement.
Treatments took about a couple hours the first two times, and each time after was shorter. The very last one was about 50 minutes.
So, after preparing for the past few months for this transplant to take place today, I was told yesterday that my titer count was not low enough. Which will result in most likely more treatments and a new surgery date of… December…. most likely in the beginning of December. As much as I want to be furious and upset, and all the emotional frustration that I am experiencing right now, it doesn’t make sense to cry about it. It is better to be safe than sorry, and to make sure everything is done correctly in order to have a successful surgery. After all, I am extremely lucky to be receiving a kidney as quickly as I am. A month is nothing compared to people who have been waiting 10+ years for a kidney.
For all my survivors out there, keep your head up and stay strong!
“A strong person knows how to keep their life in line. With tears in their eyes, still manages to say, ‘Nah, I’m fine.'” – Unknown
After months of testing, evaluating, waiting, and more waiting…
My brother and I are good to go for our kidney transplant on November 7th! We have met all the criteria for an incompatible blood type transplant and my titer count was not too high. I will have to go in for 6 Plasmapheresis treatments every other day for the next two weeks prior to my transplant and will have a medication infusion done the day before my surgery. I am told I will be very tired after each treatment, but I am just so lucky things are going so well right now.
I’m so amazed at the advances in medicine and the possibilities with incompatible blood type transplants. It truly is a wonderful thing knowing that there are other advancements in transplantation where it can still take place with different blood types. With a waiting list of about 95,000 and an average wait of 5-7 years for a kidney, hopefully with the ability to perform more and more incompatible blood type transplants, that number will slowly decrease and more patients will receive a kidney sooner.
After a lot of testing for my brother, my sister, my boyfriend (now fiancé, who proposed in Hawaii at sunset just a few weeks ago, and I couldn’t be happier), and myself… we have finally found a match! The lucky winner is…. my brother. Although, transplants are able to take place without matching in any antigens, my brother matched on 3 antigens out of the 6.
I can’t begin to tell you how grateful, appreciative, and lucky I am that my family and the love of my life have shown such incredible support over these past 4 months, not to mention, my entire life dealing with this disease. My family jokes around a lot, so it just makes it that much more easier to deal with. We’re able to laugh about it and always look at the positive side. My brother will have to do a few more tests and we will have to go through consultations with nephrologists, social workers, and financial advisors. If everything goes as planned, I could be having my transplant as soon as the end of next month. A wave of emotion has come over me and I only worry about my brother, and hope that everything will be okay for him. I have a consultation to meet with my nurse coordinator and nephrologist next Tuesday, where I can find out more information and maybe a more definitive date of when my transplant will take place.
You too can help those in need. “Twenty-six million Americans have Chronic Kidney Disease and millions more are at risk.” Go to http://www.kidney.org/, where you can donate and to help save a life.
“Forget yesterday – it has already forgotten you. Don’t sweat tomorrow – you haven’t even met. Instead, open your eyes and your heart to a truly precious gift – today.” – Steve Maraboli
Although, my GFR (Glomerular Filtration Rate) is still low, it went from 13 to 14! After over a year of my GFR getting worse, and my creatinine getting worse, I’m amazed that my GFR actually went up and my creatinine, even if it is only a tiny bit, went down! I apologize for my enthusiasm, but it’s the little things like this that sure do brighten up my day. You have to always look at the positive and stay positive because even if doctors tell you one thing, it is YOU, YOURSELF, that knows YOU best. It’s important to be informed, to keep track of your blood results, and know what everything means as well as the reasons as to why you are taking each type of medication. Do not expect doctors to be your Mommy or Daddy who will always look after you. You and only YOU can look out for the best for yourself.
If you were diagnosed at a young age, like myself, be sure to know how to read your blood lab results. I was diagnosed at 10-years-old and yet none of my doctors told me what GFR meant until maybe about 10 years later. I had asked before and one of my doctors would say, “You don’t need to worry about it.” My doctor did not even tell me when I would be able to get on the kidney transplant waiting list (you are eligible to be on the waiting list when your GFR is 20 or below), and about half a year had gone by, when I was eligible a half a year ago. Luckily, if you have the blood test results of when your GFR was 20 or below, you can still submit that report and it will still be counted towards your time accumulated. I do not blame my doctor entirely, it is my own fault for not asking again and I should know better than to expect my doctor to follow up on everything. Just remember to always be PROACTIVE.
And remember to smile, because it really is the little things that count. Have a great week and don’t let your Monday make you feel like this:
P.S. Yes, you did learn something else about me, I am not African American. (See above).