Holidays

I hope everyone had a great Christmas! 

Mine was good. I saw my dads family on Christmas Eve with Marqui. Everyone was so excited for my news I received from the dr the day before. 

Christmas Day was spent at my moms families house. My brother and his girlfriend joined us. It was nice. 

It was great to have a few days without any worries. 

 

A friend of Marqui and I had shirts made for us for Christmas.  Mine is so funny and true. 

He said it shows what I go through and how strong I am. So cool :)

Marqui and I weren't going to do gifts for each other but he did get me 3 books. Which was really cool because I was talking about divergent recently and how I need to finish the series, so he got one of those, we also almost watched If I Stay, but haven't so he got me that and the sequel. I started that one already. 

Friday after Christmas, Marqui and I went to breakfast and then went and gave gifts to his friends. We were going to see his nephew this weekend too but we didn't get a chance too. Saturday I slept all day. I was so worn out for everything the days before. I feel ok now. 

I have my dr tomorrow to schedule my endoscopy. I need to ask his opinion about returning to work because it's getting to be so much and I need to know what to do. If all sounds good I hope to be back next week. 

New Years is this week, I don't have plans. I hope I can come up with something. I never do anything and usually don't mind. But this year has been horrible. I would love to start a new one out right, I hope 2015 has a lot of good in it for me :) 

Beginning of the rest of my life

::first I want to remind/let you know I have cirrhosis from autoimmune hepatitis. My immune system has caused it. Nothing else, not alcohol or anything like that:: 

Today was the appointment in NYC at Columbia with Dr Brown. I was pretty nervous ( I didn't realize it at the time). 

It went better then I could have ever hoped.  

I was seen by one of his fellows. She was so nice and smart and able to answer all of my questions. He came in the last few minutes. He confirmed all of the info I had just learned and adjusted my medication. 

I have learned : 

I am not as bad as it seemed ( with my liver) 

I most likely have just progressed to cirrhosis this past April. 

I will not have a splenectomy

I can not have any surgery ( no more dealing with my spinal issues!)

Surgery Is a huge risk for cirrhosis patients

It is a miracle I survived my latest surgery and even my knee arthroscopy. 

I will be able to have children thought it may be difficult due to that fact that I will be less fertile then normal (yay!!!!!!!!!!!!!) 

He believes it could be possible to even reverse some of the damage ( even bigger yay!!!!!!!)

I do not need to be on a transplant list and he feels there is a good chance I won't ever need to 

I am now on prednisone at 10mg and azathioprine at 75mg

I need a MRI to check for fluid in the abdomen and for possible liver cancer

With cirrhosis liver cancer is a concern

I also need an endoscopy to check for enlarged veins in my esophagus due to the portal hypertension 

Hopefully this and the MRI come back normal   

That will increase the likelyhood of an even better future

If my spleen ever becomes too large they can do radiation procedures to shrink it

That isn't a need as of now

I think this is all. If I remember more I will mention next time

I am still shocked. I am so happy. But I haven't had good news with my health in I don't even know how long so I don't know how to react. Part of me wants to cry and the other wants to run and yell from roof tops. ( probably not safe ) 

I went into this day thinking I would hear how much time I had, instead I was given a hopeful future. I am so thankful and greatful for all the support and prayers. I have prayed as well every day for a miracle and I believe I have received one. I know I still have a lifetime of issues with all of this. But there is a hope now when I couldn't find any before. Now I see a future In front of me. I see a family I could have. It's all possible. I will continue to fight and push and do whatever I have to do. This isn't over, but it is an amazing Christmas gift! 

Birthdays, Christmas and doctor visits

Ugh it's been a while. 

First today is Marqui's birthday! He is 28 now. We didn't do much today, just finished some Christmas shopping, got ice cream and went to visit his dad. We did go out this past Saturday with his friends to the Cheesecake Factory. That was fun. 

So back to this past week. I picked up my pictures from surgery to bring to my next appointment. I also had my platelets checked once more - 61,000. Not terrible. 

Tomorrow I go to NYC to see DR. Brown. The liver transplant specialist. Hopefully I hear some good news. I hope he has a plan. As long as it goes well I will be very happy! Specially since this is all right before Christmas. I would love to enjoy the holiday. 

Not too much to report. I will update sooner this time. Probably after I come home tomorrow. Wish me luck! And fingers crossed on some good news!! 

The good

There's a few things that have been going on that I didn't mention in my last post. 

Marqui and I did a little holiday outing. The art center by us where they hold concerts use to decorate with holiday lights and people could drive through and see everything. They haven't done it for years but they brought it back! So we did the 2 mile drive through the light show, parking afterward to get some hot chocolate they were selling. It was nice. I always want to go see the tree in NYC but with everything going on this year it's out of the question again. 

I knew my friend Tiff, who lives in Georgia was coming to Jersey for the week. I didn't know if we would be able to get together with all I have going on. I planned on speaking with her this past Saturday. Well Saturday morning Marqui went out. He came home and yelled for me. I was half asleep and almost just ignored it, oops haha. He called again so I went to the stairs and said I was not really dressed (pjs) and asked who was there. He said it was just our friend Felix so I was fine with that and came down and said hi. They looked at each other funny and I looked toward the kitchen and Tiff was there!!! I was completely shocked they surprised me! So we spent some time together. It was so nice. 

After she left Marqui and I decided to take down his desk and rearrange the living room. 6 hours it took! So much but I felt really good! I was pretty sore the next day but that's ok. 

Sunday we went to his moms house and watched some comedy stuff and had pizza with his mom and sister. They just moved so it was nice to see their new place and spend time together. 

Not too much going on I guess but a few nice things. I'm really appreciating these little moments so much more since this whole year with my health has happened. I feel very lucky to have my family and Marqui. And I feel extremely loved. Despite my health I really couldn't be happier. 

Here we go

It been a while. A lot has happened. I guess I'll jump right into it. 

I missed a call from my surgeon Dr. Moss on thanksgiving, he asked me to call friday ( Black Friday). I called and he says how he has been doing research and wants me to have a splenic embolization done instead of a splenectomy. 

They go through my groin area with a needle and catheter and cut off blood supply to part of my spleen. Supposedly he says this will help my platelets. I don't feel good about it. It sounds scary, I have bleeding issues as it is and doesn't sound safe, plus my spleen is so big why is leaving it in a good idea? Oh best part- if this doesn't work I need a splenectomy!  So I ask if he has spoken with my Drs- no. Of course not. So I tell him I don't like this and I need to speak with them. He says ok and that he will call them as well on Monday but that he is also away all week- another week wasted. 

Tuesday. Call my Drs- they never heard from dr. Moss. Wonderful. 

Saturday December 6th dr. Chung my hematologist calls- he tells me he spoke with dr Chung loy (the other surgeon on my case) he said he recommends since I am on a transplant list that I see my transplant surgeon for this. 

I am not on a list. I tell my dr this and he can't believe it! Where did the surgeon get this info? Anyway he still says I should have a splenectomy and he doesn't believe an embolization is a good idea. 

I decide I am done with these surgeons. They can not communicate with me or my Drs properly. Oh! The surgeon told my dr he would call me- well today is Tuesday December 9th and I still have no call about any of this. 

I talk with my dad and we decide to seek help from my brother in law. He can get recommendations on a surgeon from Robert wood Johnson hospital in New Brunswick. I also make an appointment with my liver dr to ask some questions and get a new biopsy rx. 

Monday December 8th- 

11am hematologist appointment. My platelets are 66,000. Not terrible. He says he wishes I could just wait and monitor it and not have surgery but that given the size I need it removed. We are worried about it  bursting. He also gives me another surgeon name and I call my father to tell him. 

Mom came with me and we went to grab lunch after it was nice. I was a little down because I was given the report from the exploritory surgery and it says 'severely cirrhotic liver' ugh :( I know that doesn't change much from what I knew but seeing those words upset me. 

2:30 liver dr appointment- this is where it gets insane. 

He walks in and says 'so what did dr brown say? Dr. Brown is the liver transplant specialist who helped diagnose me when I was 14. I was told I should follow up with him once we found the cirrhosis but I was waiting till after surgery. 

I explain that and my dr says you can't have surgery! 

What?! 

Dr. Chung loy called my dr. Discussed what he saw during surgery and explained that the portal vein is very enlarged. They agreed surgery could be extremely dangerous and that I need to see dr. Brown asap. He also told my dr he would call me. NEVER DID! Done so done. 

I was very upset and very angry at all my Drs at this point. 2 weeks ago my liver dr was saying to have the surgery, telling me to have a biopsy during. Now I'm being told no surgery and that he never told me to have it! Ok true, he didn't come up with the idea but he never said it was the wrong decision. I guess once he was told all the info it changed his mind. However I don't understand why my hematologist doesn't know all this and still insists on surgery!  The surgeons really messed up here. Everyone is getting on board but when they say they will call their patient, or tell me they will discuss the plan with my Drs they need to do that. They did not. I will not return to them or recommend them. If I didn't go to my liver dr yesterday I would have scheduled surgery. Now my liver dr says no surgeon would do it, but do we really know that? My hematologist is still for it. God forbid I had it done and something went wrong! 

I called dr. Brown. They are booked until January. They asked for me to fax my records and they would determine the severity and call me if they can get me in sooner. I really need a call. I don't want this to be serious but it is and I need to be seen. I am so worried about what the right thing to do is. I am so worried my spleen will rupture. I am worried about my liver. I just want this to be a dream and to wake up now. 

I want to get through all of this and be able to live a full long life. I plan too. I won't let this stop me. But some days are so hard ( I feel fine! But emotionally it's a lot) I take in to consideration that I feel so well. I hope that is an amazing sign. Since surgery looks like it is a no go I did start my medication. I hope it works as well as it did before. I could use a miracle. 

I'm hoping to get this appointment soon because of work too. I need to make some decision and talk with my employer. I love my job I want to keep it. I also know this is serious and I need to focus on getting as healthy as I can. But it is stressful on them as well. I just want all the info possible before I talk with them. Seriously I need a miricle. 

Oh! Totally off topic! Everyone who sees this Google Addie Fausett and send her a Christmas card! She is a very sick little girl and wants Christmas cards! I went out last night and got one plus some stickers and mini coloring books to send her. Make her Christmas special! 

Happy Thanksgiving!

Today was spent with family. 

Marqui and I went to my families first. My grandparents, aunts and cousins were there. It was nice as always :) dinner was great. On our way home we stopped at Marqui's cousins house and saw his family and his mom and sisters. Got more food! It was really really nice to spend thanksgiving together and with both of our families! 9 years and I'm pretty sure that's a first! 

Marqui's sisters, mom and I 

All my posts are usually pretty depressing. Not today. 

Today was great. I felt great too. 

And despite all the trouble this year has caused I am extremely thankful. 

I am thankful for my mom. She has been there for me my whole life and especially now. All my dr visits, days I need to cry and talk. Everything. We don't always get along but I would be lost without her. 

I am thankful for Marqui. He has been by my side for 9 years through good and bad. He has been amazing this past year and recently even more supportive and helpful then I could ever imagine. He  loves me so much and I couldn't ask for better! 

I am thankful for my dad and stepmom. They have done so much to help me over the years and this year even more so. Even tough I don't see my dad everyday, he is there when I need through text or call and is there for my big surgeries and dr appointments. 

I am thankful for the rest of my family. Their continued support and love and prayers are always appreciated and amazing. They are always there for me and I couldn't ask for anything more. 

I am thankful for my job. I love the boys I take care of. They are fun and a challenge and so good and smart and funny. They make my hardest days better. They make me happy. I would do anything for them. Their parents are amazing as my employer. They have been so helpful and understanding the past year. 

I am thankful for my health. Despite everything it could still always be worse. 

I am thankful for my best- Jamila. She has taught me so much this past year and helped me grow and change as a person. I have come to know myself better because of her. She is always there when I need. 

I am thankful for so much.  I truly am lucky. I know I will continue to have more to be thankful for. I can't wait to see what the future brings. I hope for the best and hope I can reach some of my goals. Which I can add to my list of things to be greatful for. 

Until next year.... 

Happy Thanksgiving everyone!!

Really?

It's been a while. A lot has happened. I'm not sure how much I'm going to get into because I'm still getting use to a lot of the news I'll be sharing. I just wanted to update before the holiday. 

So my surgery was put on hold as we know. I've been healing well. Still in a lot of discomfort. It's such a strange feeling. Oh and the gas pains they told me about - well if I truly experienced them - omg. Horrible. Horrible. A whole day of insane stomach pain. Anyway... 

I had my post op visit last Thursday the 20th. Basically surgery started and the surgeons saw my spleen was huge! They also saw my liver and noticed it didn't look so good. They took some pictures and stopped. 

They don't think I have ITP. They think I have portal hypertension. I will go in more detail in another post but portal hypertension is a complication from liver disease. The portal vien that carries blood from liver to spleen has to much pressure and becomes backed up and causes the spleen too become congested with platelets ( from what I sort of understand so far :/ ) This causes my spleen to be enlarged and causes the ITP or thrombocytopenia, my low platelet count. So platelets are not killed off they are just not where they are suppose to be. So he wants me to see my hematologist and get a diagnosis. Then we can proceed. 

Monday the 24th- 

I see my hematologist and he tells me I do in fact have ITP caused by portal hypertension. My platelet count is also 53,000 today. He is very concerned and upset that they did not follow through yet with the splenectomy. He believes I need it done asap. 

I then scheduled my appointment with the surgeon for 3:45 that afternoon. I decided I should see my liver dr as well- 2:15pm. 

Well I see the liver dr and I tell him they have pictures of my liver at the hospital I am waiting on he decided to check on the computer and see if he can access them. He can. Then he tells me what I fear- I have cirrhosis. 

That hurt. 

He says I am not in liver failure. Examines me for swelling, yellow eyes all that and I have nothing. He says I need to be back on my meds which I agree. I ask about a transplant and he tells me not yet and that I can live a very long life transplant free with cirrhosis as long as I stay on my meds and they work. They worked before. I hope they do this time. 

Now I'm sure your saying why are you going 'back' on meds and not 'continuing'? Well.. When I was on my medication they made me very sick. I never felt sick with autoimmune hepatitis. But once I was on medication things changed and I felt horrible. I had no energy. My legs swelled. They hurt and by the evening I could hardly walk. I couldn't live like that. I spoke with my dr and we agreed to stop as long as I monitored my liver enzymes with blood work and was careful. There were many times when I would get nervous and start my meds for a few weeks. My blood work was always 'ok'. There also was no guarantee I wouldn't hit cirrhosis even on medication. When I was diagnosed I was stage 3/4 of fibrosis stage 4 becoming cirrhosis. When I heard the news I did blame myself. But my dr also said there is no way of knowing what would have happened. I made the decision and at the time it was best. I still stand by it. I know now I have no choice and that's ok. I will do what ever I have to to be ok.  

On to the surgeon appointment. I tell him all the info I learned and he has written confirmation from both drs and a letter stating my liver dr wants a biopsy done during splenectomy. He becomes a little concerned and says he wants to talk with them. My case is extremely rare. Not many people my age face this. He wants to make sure that I will be healthy after surgery and that surgery will not possibly do more damage. I really like that he wants to make sure. He said I will hear from him Wednesday before Thanksgiving. If all is good we will schedule the surgery probably for next week. 

I am beyond scared. I don't think I have ever said that in a post yet. But I am. I keep reminding myself how confident my liver doctor sounded and everything he said. My liver enzymes in my blood work were also almost normal. I'm hoping that means I have a great shot. I worry about what will happen. I worry about needing a transplant. And I worry about my future. I want to get married and go back to school and have children. I don't know now what is possible. I will have this talk with my dr. Yesterday was just such a shock that I couldn't ask everything. 

I have had the most challenging year of my life. It continues to get worse it seems. I am trying to stay as strong and positive as I can. But I really need a miracle. I am not a very religious person but I want to go back to my church and speak with the priest. Maybe he can give me some guidance. Anything that can help me feel better and give me a way of dealing with everything I am certainly open to. 

I am very nervous for the biopsy. I really hope it shows something good. It's not good. But I hope it shows it's not as bad as it could be. 

I am thankful for all that has happened in some way. I am thankful my knee did what it did a year ago because without that I never would have gotten here and I never would have found any of this out. That could have been worse. Way worse. 

I have made it through all this other stuff I will make it through this! I have so much I want to do I won't let it stop me. I can't :) 

1 year anniversary!!!

Don't know why I put exclamation points haha. Not a 'great' anniversary. 

It is true it has been 1 year since my knee went out. 1 year since all this craziness began. 1 year since my health has crashed continuously. 

BUT I am still here! 

November 16th 2013 I was babysitting and felt great. Put the little boy to bed and around 9pm my knee suddenly had the most severe pain I have ever felt. I went to go get ice and I could barely get up. Then once up I could barely walk! 

Ice didn't work, Advil didn't work, I called Marqui hysterical and then finally by 10 the parents arrived. 

They had to carry me to the car and Marqui had to get me out and carry me inside. It took about a half hour from the car to my room. I'm not sure why I didn't go to the ER immediately. 

That's what I was told. A sprain. I could limp pretty well at that point but how do you sprain your knee sitting on a couch?! 

I followed up with a great orthopedic DR. Beiro. 

Not meniscus :( 

I had fluid drained a total of 4 times. I began physical therapy with a great therapist Alex, he was amazing. We could only do as much as ice it. I was in so much pain and couldn't even bend. 

The ice pack he had was amazing and he showed me where to order one. 

Two days later I had it! 

I also was given a huge brace to help stabilize my knee 

Even tried crutches 

I was then referred to a rheumatologist to rule out arthritis. 

More fluid drained. 

No answers. He was so nice too. He recommended a knee arthroscopy and biopsy. 

That was scheduled for April 11th 2013 with DR. Beiro. 

I didn't need crutches or pain meds. I walked up my stairs like it was nothing. And of course my knee was perfectly healthy. 

I refused to give up. I then suggested seeing a nuerologist to rule out MS. 

Dr Beiro agreed and I went on to Dr Zu. 

MRIs scheduled for my spine and he has a feeling it could very well be MS. 

Called the next day to come back. It's not MS. 

I have spinal dysraphism. A congenial problem. My spine is bent almost 90 degrees iny neck and comes back down narrowing all the way. Tightening around my spinal cord. My spinal cord is also split in two in my neck and unprotected. 

I have to see a surgeon. 

I see a surgeon at JFK medical and I cried in his office. Horrible dr. He tells me it's not causing my knee problem and even though I am 1 in millions I am LUCKY to see him so fast! Unbelievable. 

I go back to DR Zu and he recommends Columbia. 

Immediately I see the top spinal surgeon at Columbia. Hah. And the other guy thought he was so special?! 

Dr Paul McCormick sees me. So nice. Agrees it is causing my leg problems ( oh yes over the months it went to both legs) 

Says my MRIs are not clear enough to come up with a surgical plan and he gets a team together. They decide I need a myelogram. Basically a spinal tap with ct scan to see everything better. 

August 13th 2014 I get called saying my procedure for the following day is cancelled due to a low platelet count. I have to see a hematologist. 

I see my primary first ( gastroenterologist) to rule out my liver disease. He referred  me to another amazing dr. Dr Chung. 

I also have no iron. None. So first step a round of 5 IV iron treatments. 

I also was given a ct scan to rule out lung cancer. One of my MRIs showed a spot on my lung. My hematologist is an oncologist as well so we checked it out. Just a hernia! 

Back to my blood.... 

Then I was put on prednisone for the platelets. No luck. We changed and increased the dosage. I am not responding. I am diagnosed with ITP. We ruled out bone marrow issues and leukemia. 

We decided on rituxan. A type of chemo used for no Hodgkin's lymphoma, as well as other diseases. Rituxan is an IV injection given over 3-4 hours in my case. It cost $8000 per injection and I needed 4. Luckily my insurance covered it! 

They give you Benadryl first in the IV and you get very sleepy. Then the rituxan flows. I had some side affects. And very difficult time with my veins. Bruising, unable to get veins you name it. 

My count went from 77,000 to 86,000 to 83,000 then the worst 40,000. Normal range is 150,000 - 450,000. That's when we knew it was not working. I need a splenectomy. 

It was decided on Monday November 3rd 2014. I was seen by a surgeon that Wednesday. Surgery scheduled for the following friday - November 14th. 

My surgeon DR Moss was great. He was having the other surgeon in the practice assist. Dr Chung-Loy. 

As we know from my previous post surgery did not go as planned. 

I still have my spleen for now. But it will have to be removed. I will see my surgeon this week and find out the plan. 

This year has been a roller coaster. To think it all started with my knee. My spine issues are put on hold all because of my spleen. It is always something else. I'm so ready for a break. 

But I have learned a lot about myself. I have learned I am so strong. Stronger then I ever thought possible. 

This whole year I have continued to work as well and go to all my drs and tried to live a semi normal life. I have noticed more and more since about August I don't look like me anymore. I look sick and less healthy. All the toxic medication that were pretty much pointless have ruined my body. For now. I hope to get back to looking healthy again at the end of this. I am not letting it bring me down. I have had anxiety attacks and all but I continue to move forward. 

I have learned I want to go back to school and would love to become a nurse. I want a family and to be successful. If at then end of all this I have have all that then it will be all worth it. It's just part of the journey. Some days are harder then others. But a year later I am still here. And I plan for that to not change any time soon :) 

Surgery

Yesterday was the longest day every. But let's go back to Thursday. 

My mom thought she had a stomach virus on Wednesday. But by Thursday it was clearly something else. I'll spare the details. Convinced her to have Marqui take her to the hospital. She didn't want to. Wanted to be able to take me Friday for my surgery. No way. Off to the ER she went. They admitted her around 9pm. Marqui and I were at the diner. Late dinner since I couldn't eat after midnight. I calmed down immediately and stopped worrying about her since she was admitted. The it hit me. Surgery in the morning. 

Marqui was taking me and went to work until 7am. Came home to wake me at 7. We got ready and left by 9:15am. 

He got me a spleen!! 

So cute! I love it. Of course I forgot it  at home. 

At 9 I took a Xanax. Wow it helped so much! We arrive and meet my dad and Mary, my stepmom. Off to admitting. After an hour of waiting we find out same day surgery is waiting for us :/

Up there- Paper work and all. Marqui is with me but I switched for my dad. I get changed and give a urine sample. Back in my little area and go over questions and try to start and IV. They need a large vein for this surgery and of course im running out. About a half hour of searching. Tried 2 times with no luck. They decide the dr will do it in the OR. 

Find out at 11:30 I'm delayed. Fun fun. My nurse decided to try a new vien. We get it! Anddd then it happens. Vien pulls away needle pops out and blood goes everywhere! She was so upset. I was fine. I'm use to it. Try again. Got it but it was very sensitive. Any movement and it stopped flowing. 

Finally I don't even know what time, I am transported to the 4th floor holding room with everyone. Half hour to go! 

I meet my nurses, see my surgeons and anesthesiologist. The surgeon I haven't met yet was so nice! Went over the procedure and explained once asleep I would get a breathing tube and catheter. Ugh. 

Finally just after 4 and time to go. 

Into the room and right asleep. 

As I'm waking I hear a nurse saying 'she came for a splenectomy but they didn't do it' no, no no no no not me, can't be! I'm waking up from surgery! 

I asked for my dad, he comes over. 

What happened I asked and he explains they didn't do it :( 

My spleen was grossly enlarged and they realized it is not ITP. Not really anyway. He is asked to leave. 

My surgeon comes over and explains  the same. Said he was not comfortable taking it out without knowing for certain the problem. I respect his decision. 

I go to recovery and wake up well get dressed and am sent home with two little incisions held by glue. 

No pain meds! Dinner and bed.

Today I felt ok. I felt really good I thought. Took a shower that tired me out. Didn't rest much. Oops ! 

Mary sent me home with magazines,cookies, pretzels, lotion n and lip balm! ( we assumed I would be over night at least ) 

Now I am exhausted and sore and not feeling great :/ tomorrow and all week I WILL rest. 

So I got the story. Basically it looks like my spleen is trying to give platelets to my liver like it should. But my liver isn't taking them. Causing my spleen to back up and become severely congested and enlarged. 

Yes I have a low platelet count. So ITP is suspected. But with ITP the platelets are killed off. Mine aren't killed. They are being held hostage! 

My liver isn't looking great either and I'm getting the feeling the thought of a transplant isn't too far off into the future. But I'm not jumping to conclusions yet. I see my surgeon this coming week to talk about a 'plan'. Hopefully it's a good one! 

I will have to have my spleen out at some point. I think I rather it be sooner than later. But this time there is not a chance for laparoscopic. They will be opening me fully :( 

Hopefully my liver isn't too bad either. I don't want more problems. Even though it already is one. I knew some day I would have to deal with it. Hopefully that day isn't so close. Hell maybe I'll get lucky for once and I won't see that day ever..... I hope?

Anyway. That's all for now. Long tiring  stressful day. And somehow I'm calm and ok and not worried ... Yet. 

My mom is ok too. Ulcerative colitis. She has had that before. Hoping they can treat her well. She is there again tonight. Home soon hopefully.

Ok time to rest! 

Goodbye spleen

Surgery at 12:15pm today. 

Wish me luck 

I'm super anxious :( 

Last days of having a spleen

The countdown is on. Friday I will have my surgery. This week is so stressful. Yesterday I went for my platelet count and I am at 59,000. He said I will need a platelet transfusion before the surgery Friday morning. I have to go Thursday for a type and cross blood test so they know what to get me :/ 

That visit Monday was fun :/ blood would not come out of my arm! 

Every time it would go sooooo slow! It would just go to the little wire tube. Never reaching the collection tube. ( I should know that actual names by now ) 

So now my arm is so pretty 

Petechiae all over on the right side :( 

My hands all looking about that same as well I'm just too lazy to take a picture haha 

So today Tuesday- I went to my primary/liver dr. For clearance on my pre testing for surgery. All good :) 

My liver is doing well! First thing he said was 'your liver is doing great for not beig on medication' 

AST and ALT slightly elevated but barely 

Yay!!

Finally some good news. 

 

I only had work this morning. Which was a huge help. I cleaned all morning the dr and now writing while dinner bakes. 

Tomorrow I have to go food shopping and Thursday I go for that blood test. Then friday is the day ! 

Ugh ... I'm really happy my dr gave me anxiety pills for Friday. I'm beyond nervous/scared

It will go well. I have to remember that. 

Secrets out

Walking to my door this evening after work my neighbor said hello and asked how I was feeling. I went over and told him what's going on and after a bit of discussion he looked at me and said 

'You're a superhero' 

I don't feel that way but everyone has said things like they are proud of me and I am strong. But that coming from someone I don't know all that well really made my night and makes me want to fight harder. 

That is all :) 

85 days

Well I called my hematologist on Tuesday and told them I had the surgeon set for next Wednesday. No good- I need to be seen now! Luckily the practice I was referred too has 2 drs. Mine was on vacation until the 12th. So I changed to the other dr and was seen the next day - Wednesday - a week before my original appointment. 

This was yesterday. It went well. I really like the dr. He is also having the other dr assist him. So I feel very safe having two great surgeons work on me. 

I asked a bunch of questions and got a lot of info. Basically this is my only option. My immune system sends out antibodies that attach themselves to my platelets targeting them. My spleen then recognizes this and kills them off. So in theory- remove the spleen stop the killing. 

But somehow there still is only 70% chance for complete remission. Ugh. And of this doesn't work I have no other option other then monitoring weekly and getting platelet transfusions when the count drops too low. But hopefully I won't have to worry about that. Fingers crossed.   

They are going to try it laparoscopicly. Hopefully won't have to open me up more. I will stay over night and if all is well the following day I will get to go home. 

This is safe to do with my liver disease. I was worried about that. Oh and I was told that they will have bags of blood and platelets ready for me incase of any problems. Reassuring. I already knew I would need blood though. I'm at a dangerously low level for surgery. Which makes me laugh. 3 months ago I was in better shape yet told I couldn't have a needle stuck in my back because of the small chance of bleeding to death- pretty much. Yet now I'm wayyyyy worse and it's totally fine to cut me open and remove things! I know I know, no choice now. But really? Doesn't make much sense and doesn't make me feel very relaxed. 

So surgery is set. I have pre admittance testing Saturday. Monday I go for a platelet count check and Tuesday I go for pre testing results. So much. Oh and work all week. And then surgery. :( 

My mom and dad will be there. Marqui will too. Not sure yet if he will be there the whole time or just after yet. 

All this is just crazy. I was not expecting surgery in a week. It's all breaking me down too. Few times this week I had a horrible headache and my face would get hot. I didn't know it was probably the start of an anxiety attack. Till yesterday. Headache, flushed face, bloodshot eyes, shaking, heart felt like it would explode. I was on the verge of yelling and tears. I just kept telling Marqui and my mom 'I'm going to have a heart attack'. Even up until this morning I thought for sure if I had to even talk about any of my health stuff going on I would have a heart attack. I was so sure I was actually terrified of someone calling me or texting me or asking me anything. I spoke with my dad and immediately told him how o felt then he laughed and said its not a heart attack it's an anxiety attack. Bingo. Yes it is. 

I know I can get through this. I know I'll be fine. I'm worried about surgery of course. But it's not even that. This past year has been nothing but stress and drs and needles and procedures, new health issues, and more stress. I've been strong for a year. I've held it together for a year. I can not do it much more. I've said it for a few weeks now and it's finally happening. And I'm ok right now. Most of today I have been fine actually. But I'll break again. And then I'll be ok. I just need it all to stop. Everytime I see the light at the end it goes out. I really am looking forward to this surgery. I see the time off as a vacation. Yea I guess maybe I'm going crazy? Haha. But really. I need a week to just not worry. Not have to do anything. I need a week to just stop everything. Then I can move on again. 

After all I do have going back to school to look forward too. And my whole future really. Hopefully this surgery is the beginning of the end of my 'bad ' year. 

Alright, my head is killing me again and it makes me have such a hard time focusing. Platelets probably are lower again :/ I'll update when I can! 

I don't like today at all

I feel like I'm going to be sick :( 

Platelet count check this morning - 45,000 

Dropped 10,000 in 4 days. WHILE on Rituxan and dexamethasone. 

So now I am faced with one option- splenectomy. 

I have to go back Monday again for a count check. It's getting too low to not check. If it drops much more I will need a platelet transfusion. 

I have an appointment next Wednesday with a surgeon too. We'll see how that goes. 

I'll also be calling my dr at Columbia University to see what he thinks. Not sure if he will know much seeing he works with spines but I guess it can't hurt. 

Not much else to say today. Just wanted to get the info out. I'm still kind of out of it from finding out. I don't think I mind the idea of surgery so much as the idea that my platelets just keep dropping like its nothing. 

Vacation please??

Halloween, burgers & hair dye

Yesterday was Halloween. Luckily I had off in the morning. Which was great because I was up at 4am very shaky. This Rituxan really doesn't like me :( 

So I got to sleep in and go to work at 2:30. Niceee 

They kids mom was home and took the two youngest trick or treating. The oldest didn't want to go. What 8 year old doesn't want to go get free candy? So he stayed with me and gave out candy. 

Oh ! and the adorable cookies I got the boys for Halloween 

Frankenstein how cute?! 

Last night was nice. Marqui and I went and got some burgers from White Rose, I ate more candy then I should and watched 'Black-ish' - so funny by the way. Watch it! 

Now it's Saturday and rainy and cold and blah. Marqui and I will go to dinner tonight and at the moment I am dying my hair 

Oh yea so attractive. :/ 

Finished look coming in about a half hour! Haha 

Oh! Almost forgot. I decided to look back at past blood work results from over the years with my liver and I can't find them all et but I did find one from 2011. My platelet count was low! Not terrible at all 124,000 ( remember 'normal' starts at 150,000) so low still. I will try to find more results so I can see how far back this really goes and if I can find any with higher or lower counts. I wish I was told about this long ago. I guess since I was 'safe' for procedures it wasn't somehow necessary to tell me? I don't know. I don't really like that. 

Anyway- rinse time! Picture to follow :) 

Rituxan #4

 

Pretty much :( but still it sucks a lot today.  It is Thursday so of course dr day. I tried to be as hopeful as I could today for my appointment, besides Marqui was coming with me and that's very unusual so I figured he might be good luck or something. 

Well started out good- only 3 attempts to get a vein. Last night I told him we should take bets. I said 12 tries, he said 1. I'm glad it was closer to his guess. 

But...platelet count... Was 83,000 2 weeks ago at my 3rd rituxan treatment and today........... 55,000 

55,000! 

Fifty five thousand!!!!

55k!!!

Ok you get the picture. Seriously. Why?! WRONG DIRECTION! 

Yea it is still 'safe' but when I need a procedure done and probably back surgery this is NOT good at all. 

As well as the fact that my mouth randomly bleeds, I have some bruises and red blood dots all over ( I know it has a name, rituxan fog going on over here) 

Ugh. 

Not good. I don't know why my body feels it needs to kill itself but it does. And it's putting up a serious fight. 

So I go back Monday now for a count check. If it is low still I will be switching to IVIG. But in shot form , I think? If it is going up we will continue rituxan.

Be up. If it doesn't work and the shot doesn't work I will be needing a splenectomy and I really don't want that. 

:( seriously bummed out. Thank goodness for Marqui being there. I almost lost it completely when I heard the count today. 

I'll try to stay hopeful :/ 

So there is this girl, she's my best friend...

Something happened to me yesterday that many won't agree with. Well that's not true actually. But a lot of people wouldn't do it that's for sure! 

This thing made me realize how special someone is. It showed me that I am a good friend and that I am important to others. It showed me that I really do have people pulling for me. 

My best friend Jamila, who I have talked about, did this thing for me. She is in Germany and she always is there for me. I have so much going on I just hope I'm there for her enough as well, but anyway... She truly did this out of the kindness of her heart and I was so touched. I actually am doing something similar once my ITP is under control ( hopefully that happens) but she didn't know this. 

We always seem to do similar things without the other knowing (chopping our hair off haha) she is more then a friend she is a sister and family. 

Yesterday she went and got a tattoo of the initial 'B' for me. It is so simple and beautifully done. I am honored and truly touched. 

This is such a permanent thing, and to be thought of in such a way that doing such a permanent thing to yourself is so unbelievable haha. I can't even think of words to describe it! 

So pretty :) 

On another note last night was so nice! I came home from work and Marqui tells me we are going out, and I'm not getting told where...

This never happens... 

We leave ... He takes me to the movies! ( I said I wanted to try to go soon, we haven't seen a movie in a long time)

Then he won't tell me what we are seeing! Haha. The ticket lady doesn't even say 'enjoy (insert title here) ' just 'enjoy the movie' :/ 

We go to the theater and the digital banner above is rolling so I look to see the title and seriously all it said was 'now showing' come on! 

Finally once the previews start he tells me. Ouija. 

It was good, stupid, and def scary at some points. Haha. Not the worlds best scary movie but good enough that we enjoyed it and had a good time :) 

Now let the weekend begin 

The facts

A Thursday and no dr today. This feels.... Weird. Of course I found bruising yesterday while in the shower. So now I'm worried. I just have to wait till next Thursday. If I really worry I'll call them Monday. 

This is going to be a long one. I'm going to explain a lot in this.... So here we go ... 

www.pdsa.org 

ITP IDIOPATHIC THROMBOCYTOPENIC PURPURA 

a disorder that can lead to easy or excessive bruising and bleeding. The bleeding results from unusually low levels of platelets — the cells that help your blood clot.

SYMPTOMS

• Easy or excessive bruising (purpura) — your skin naturally bruises and bleeds more easily as you age, but this shouldn't be confused with ITP
• Superficial bleeding into your skin that appears as a rash of pinpoint-sized reddish-purple spots (petechiae), usually on your lower legs
• Prolonged bleeding from cuts
• Spontaneous bleeding from nose
• Bleeding gums, especially after dental work
• Blood in urine or stools
• Unusually heavy menstrual flow
• Fatigue

Sometimes you may have no symptoms. 

TREATMENT 

Corticosteroids such as prednisone, are commonly used to treat ITP. These medicines, called steroids for short, help increase your platelet count. However, steroids have many side effects. Some people relapse when treatment ends.

IV treatment is also used if you do not respond to steroids. These include IVIG, Nplate, and Rituxan. Platelet transfusion can sometimes be used depending on the patient ( I can not do it. My body will destroy the new blood immediately). 

Usually as a last resort a splenectomy is done. This does not always 'work'. There are risks as there is with any surgery. 

For my particular case prednisone at 60mg was prescribed. I did not respond and was down from 80,000 to 50,000 platelets while on it. I then began rituxan and so far have gone back up, and slightly lower again. I will see how my level is next Thursday to see where we go next with treatment. 

 Yea that explains a lot ^ . I finally have tapered off of prednisone but man, I can't stop eating! And I tell myself no more and then I realized I got more food. It's horrible. Uncontrollable. And the worst part is I'm not just eating for the hell of it. I am seriously starving! Pretty sure rituxan is now adding to it.

 Marqui and I went to the Outback for dinner last night. Order of wings ( that was comped btw- great waitress/manager!) chicken and parmesan pasta and cheesecake to only go home and feel as if I haven't eaten in days. Seriously. Days. I made myself not eat again though. Which meant waking up this morning feeling sick I was so hungry. Can't win. 

But yes! Our wings were comped which was awesome. It seemed like we were waiting a little long and just as we noticed the manager brought them out apologized for the wait and told us it would be taken care of. When we got the check we saw it was taken off the bill. We really didn't even wait that long for them. Great service right there!

Well I guess that's enough for today... Can't remember what else I wanted to put on here .. Another lovely side effect going on in this mess of a body. 

I wish I was better at thinking of post titles..

So I'm at work and I'm by myself ... Well not really. The 2 year old is asleep, the oldest not home from school yet and the 5 year old he got to go to the school with Jesisca, the other nanny because he is going to a friends house for a play date and they are meeting at the school. So I had some time. 

This past weekend was pretty good. Saturday I went to my geandparents house and my cousin came for a visit. He is a marine and we don't get to see him often. Sunday was our friend Felix's 18th birthday. Crazy. I met him when he was 8!  We went to his house for a party. Which basically meant I spent time with his older brother cooking in the kitchen. Haha. That's how it always is. If there is a party his brother cooks and I seem to join him and his girlfriend in the kitchen. It was fun. That was probably the most eventful weekend I've had in a long time. I usually spend most of my time in bed. I did go home and pass out by 8. But overall despite this horrible migraine I've had for weeks now, I felt pretty good. I have noticed some TMI things that make me think there is a chance of a lower platelet count. Of course my dr is on vacation this week ( how dare he! ;) ) and I won't have my normal Thursday appointment! Woah. I'm not ready for that. At. All. Nope. Really not. Every week I dread Thursdays ( for the injection, not my dr I love him) and now that I can't go because they are closed I am so worried. I keep thinking my count will drop so low, or that the week break will make me react different the following week during the injection. I hope I'm just paranoid, which is a lovely side effect from all these drugs btw. 

It is a great thing for my veins though. They need a serious break. Seriously they hate me. I know it. Hopefully maybe they won't collapse 8 thousand times before I can start the injection next week. 

So I wrote this crazy long letter to my friend Jamila. She was an au pair for a family I babysit for, for a year. We became super close. Were family. Sisters. Anyway she is from Germany and went back two days after my first appointment with my hematologist back  in August. I'm pretty much going nuts without her. But we talk everyday which helps. Being sick though and going through all this I would love to just take a break from it all and go out with my best friend :(. Hopefully once I'm somewhat better I can get over there to visit. Anyway. I wrote her an email all about ITP because well I'm freaking her out. So I wrote all about it and all the meds I'm on. I'll probably put all that info on here this week. It was helpful even to myself to write  it all out. Makes it not as scary, kinda. 

Us :). I looked so healthy! I miss that. 

Yea we party the night away in NYC too. Haha. Still can't believe I actually had energy just a matter of weeks ago to do that! 

Oh well. Someday I'll be my actually age again. 

11:16

& I can't sleep. I'm a mess. I hate all this medicine. I'm so worn out and tired. Beyond tired really. Yet this stuff has me crazy. My head is killing me and my heart races and I get so anxious and antsy and nervous feeling. It's horrible. Like seriously I had a good day and tomorrow I am going to visit family. What do I have to be anxious or nervous about right at the moment? Nothing. Yeah things haven't been great with all of this but come on. I know it's all these steroids and rituxan. 

I have been doing more research on itp and have learned a lot more. When my head is a little clearer I plan on writing a post with some facts. I also have been thinking I have had this a lot longer then we think. 

No one ever said anything about my platelet count yet I also don't think I have had it checked frequently. It also fluctuates so much that I could have been lucky ( or unlucky) and it was in normal range whenever checked. I think I had it a while because of one incident I remember about a year ago maybe two.... 

I was cooking dinner and I was talking with Marqui and it felt as if I had food stuck between my teeth and the side of my cheek on the top right side. I didn't want to be super gross so I went to the bathroom and went to remove the piece of food or whatever it was. When I did I looked and my hand was covered in blood. COVERED. Scary amount of blood, covered. It turned out it was a blood clot, I assume anyway. I panicked and went to my moms room. Knocked and went in with a look of panic on my face, hands covered in blood and mouth filling quickly. We rushed to the bathroom where I rinsed my mouth out for a good 20 minutes before the bleeding stopped. I was crying. I was so scared. 

Afterward I realized I had no cut, no tooth problem, no reason for bleeding. It never happened again. Yes my mouth will bleed slightly when I brush my teeth which I know now is associated with my itp. But never that bad. 

I thought about that today and it hit me hard in my chest that I bet my platelet count was very low when that happened. That's the only thing that could explain that incident to me anyway. 

Really makes me wonder if I will dip very low ( possibly again). I also have this crazy thought that I wish I bruised more. Yeah nuts I know. Here's my reason- everything I've read from people with itp or just facts says you bruise very easily. I get bruises but not like it says I 'should'. I don't really like that. No I don't want bruises, but I feel like with something so unpredictable as itp and the fact that I won't be on treatment forever nonstop I wish I had some way of knowing for sure when things go wrong again once I'm of rituxan. Does that make sence? Maybe there are ways I will know? Maybe I just don't realize it yet? Or maybe all this medicine is really messing with my head more then I know and I'm losing it :) 

66 days

66 days since I was told I had a low platelet count on August 13th. 

I was posting on Instagram yesterday and put hashtags and being nosey clicked them to see others relating to my situation. I found someone doing rituxan for ITP. She has a blog as well and I read some of it. She counted the days since her diagnosis and it made me think- I want to remember these things and I didn't for some reason. So I went back and decided to remember the day I got the call that my myelogram was cancelled because of a problem with my platelets. 66 days. 

Yesterday was Thursday and that means dr day. Rituxan treatment number 3. Horrible. Horrible. Horrible. 

We start of course with the usual 5 minute search for a vein. Found one- collapse. This continued 7 more times. 7. Then I began to worry because with each one I bled the thinnest looking blood and I knew it wasn't a good sign. I usually don't bleed from blood work or IV. Usually, well 66 days ago. We get it on my left wrist where I had it done the past two times. I'm still brusied from it. 

Blood count - 83,000. 

I know for most itp patients that would be amazing. But for me while yes I have gone way lower, I still need 100,000 at least for my myelogram. Plus, last week I was at 84,000. I know a difference of 1000 doesn't seem like a big deal but when your doing rituxan treatments along with prednisone and dexamethasone anything less then 85,000 is a disappointment. It also makes me realize that while I'm not one to need treatment unless I'm having a procedure done that maybe I'm becoming a patient who will need treatment no matter what. If it is so difficult to get the count up when it's not so dangerously low makes me think it is just going to progress and get lower. I'm ok with that. I've accepted how good it could be and how bad it can get. 

Anyway... I start the Benadryl drip and get set in my chair. Full house today in the room so my mom decided to free a chair and go home. Last time as the Benadryl ran out my arm would ache. Start rituxan and it was better. Same thing happened. Although it didn't get better. It got worse. Turns out my vein was too small and weak from all of this and the force of the meds was too much. My arm hurt when my dr barely touched me. So we had to stop it and undo it. 3 tries this time and finally we get it in my hand. This is ridiculous. Viens, blood, liver, spine, immune system - I hate you 😒

I felt very out of it and dizzy the whole time. After I was ok. Mom and I went to the diner in town for lunch before I had to head back to work. Work went well. I did get the horrible headache though which is still continuing. 

I went into this rituxan treatment plan thinking about 4 treatments is all I would need. My dr now says we don't know how much I will need. I understand. It's no ones fault but my bodies. I was looking forward to only one more though. 

.... I ordered a book I found called Wish by Spirit. It is written by Joan Young. She has itp and wrote about her journey. I haven't started it yet but I hope it helps me understand more. I want to try to get Marqui to read it. I don't know if he will. I want him to understand all this. I still don't either. 

I think I would feel better if I understood why all of this happens. To me. To others. What goes so wrong to cause our bodies to attack itself? Why does my body decide hey let's try to kill you!, I know we will never know. That's the hard part. 

So much can change in 66 days. I wonder what will happen in the next 66...

La la la

So I'm a day late with my normal Thursday post. Yesterday was the longest day of my life... Not really... But close. 

Work till 8:30am then I headed over with my mom to the dr. All set by 9 in my comfy chair with my rituxan flowing and the tv on. My dr comes and tells me I have 84,000 platelets! Although I don't want to get to excited yet. Before treatment they fluctuated on their own and since I only had one injection before checking the count it is too early to say. However if it is still going up next week I think it is safe to say the rituxan is working. 

I also was given a new steroid I need to take weekly in combination with the rituxan. I haven't taken it yet actually. I was told I will be up all night with it and should go to AC! Haha. So I am waiting until tomorrow- Saturday. 

It went well. I had to get stuck twice. But that is nothing new. My veins really don't like to cooperate... Unfortunately we had to use the same spot as last time- right in my still very dark bruise :(. But it held up the whole time. 

I felt a little better this time afterward and went to work with help from my mom. Luckily I was also able to leave a little early and went home to bed. Today was good at work. I stayed late and got home around 9. We had movie night at the 5 year olds school. Everyone was in pjs and we brought sleeping bags. Tons of kids and parents filled the gym with pizza, bags of popcorn and candy. It was fun. We saw Monsters INC. Now I'm home wide awake for some reason and Marqui is knocked out next to me. Im watching reruns of How I Met Your Mother. I love this show...

Anyway 

So lately with everything that's going on I've really been changing. I haven't been in the best mood so I'm not sure anyone really noticed it. But I have. I have a completely different outlook on things. I always wanted a good successful future but didn't seem to be on the same logically path Marqui was on with our future and now I am. He noticed. One of the biggest things is school. I never finished. I went to The Art Institute of Philadelphia right after high school in 2007 for graphic design and I loved it. But I came to realize it wasn't for me. Over the years I wanted to go back for sonography and then child education. I don't want to be a teacher. And I still can't get my mind off something medical. I always would go back to it and then change my mind feeling like I shouldn't do it because no one ever expected me to do something medical and it must be a 'silly' idea. But here I am and I am going to go back to school for nursing. 

It hit me that I need to do what will make me happy. I love kids. I love nannying. I need to go to school for myself. To be proud if myself. I want to work with kids. I do NOT want to teach. I want to help people. I really want to be a nurse. 

I think this past year has been a blessing in a lot of ways, most I won't realize yet. This is one of them- bringing me to the realization of what I want to do. I have had some of the most amazing, caring, helpful doctors and nurses over the past year and I kept thinking everytime how I would love to be able to help someone like that. I also have gotten over my fear of needles with all the IV and blood work and I bet I could do it on myself by now! I have had to help a few times with holding it in :/. 

Anyway I think this all was suppose to bring me to this point. Now I have to figure out a plan. I decided on a school and program and if all goes well, will be going for my associates degree in nursing. Which I then would take the test to be an RN. I then will decide on working or transfering to complete my bachelors degree. I have to set up a meeting to discuss it all and hope I can get a loan. I would love to start the next term which is January. I wanted to wait until I was 'fixed' but if I can start now I think that may be better. I have to see what they can do for me if I need to leave for surgery on my spine though. So it's not all figured out yet, but I have a plan and I haven't been this excited for something in a long time. I really hope I can make it work and my body cooperates. I just need 2 years. Just get through it and work on my health and then I could move on with my future. I have a goal and I won't let my health stop me! 

I guess this is enough for now. I kind of blabbed on and on. I think I will be writing more so my posts aren't novels haha. 

Until next time :)