Wednesday, June 29, 2016

Updates on Port

Well yesterday I did my walk-in to the ER, amazingly that time just kind of flew by between having the PA check me out, to a nurse that access me without a hitch and having an radiology nurse come down to check me.

When I got access and check for blood return, there was very little . . . There was slow movement with the blood, almost like clumps from my dad's point of view. For me I just really couldn't look because all I could see was bad news and not much else.

When the radiology nurse came and tried it, the blood return still was the same so we went on down to Radiology Intervention and did TPA. So as we waited anxiously for 30 mintues to come, when the time did we still were having issues with blood return. It got better but not like it should be.

So we went ahead and did the dye test, overall the port is working fine but there may be either a clot or fibrin sheath that is causing all the problems. It's like for example I don't feel any discomfort when getting a flush when my head is turn away but I feel a little discomfort when my head is turn facing forward.

We did another round of TPA and waited 2 hours, during those two hours my dad and I went to say hi to some old friends on short stay and then headed out to eat at Wendy's then stop by shopko since it's right next door.

We return back and the blood return was again a little hesitant but if might be due to the nurse didn't do an flush first then check for blood return. So can I say that the second round works? That I'm not sure but even after the dye the Radiologist that read my dye test said that there's nothing that would indicate a problem or no reason why I can't keep using the port.

So in other words, we won't know how things goes with the port until my next infusion which is next Friday. You can say that my nerves and being anxious grows on my mind as my infusion day comes closer.

I wish that somehow that there were more definite answers to reasons why I was having issues but again if it is fibrin sheath which most likely is, that there's really no way to dissolve it if it's on top of my port and not within the port itself.

My dad did some research on the new and improved ports nowadays, I think if we need to change out the port I will get a new one. After just talking with my parents and talking with a lot of people from the CVID facebook group that I would hate to start having problems and reactions/side effects after going for 17 years without them. 

But at least one thing came out of this little trip to the ER, I did get heparin after not being able to get it at my last infusion.

Tuesday, June 21, 2016


June 17th, Need some prayers in these next few days, three weeks ago there were issues getting me access however I did get access and had my IVIG. But yesterday, none of the nurses could get me access as they each felt resistant and the needle wasn't going through like it usually does. Monday my dad will be spending most of his day making phone calls to the doc that put my port in 15 years ago, and to my primary physician since he was not working yesterday (FYI almost no docs works on Fridays apparently) 

I've managed to get a hold of my immunologist yesterday after my dad called the triage nurse who doesn't know the difference between it being an urgent call or something else. I actually call the receptionist where you make appointment and told the women about the urgency that he needed to call me ASAP. 

My dad and I talked with my immunologist, and the reality of the port is that maybe it's just time to have it out. It gave me 15 years and 7 months, weirdly enough I'm not getting an biological signs like a lot of people do. It's really all Mechanical from this point, there's no redness, nothing that my skin is showing signs of an issue. 

So I'm kind of thinking and as a family decision, that the Port is going to have to come out rather than potentially fixing it. We are going to try and get an ultrasound scheduled to see if we can see what's going on because we won't be able to do an dye test because of the issues with the port. 

So what's my next options? My immunologist suggested Sub-Q but with the amount of grams I get that it would be near impossible to do plus I could get more of a reaction and/or reaction Plural with Sub-Q than how things are now with doing it every three weeks for four and a half hours. 

So yesturday how it went with me getting my infusion is that the wonderful nurse name Shelly, who actually used to work for Red Cross looks at my arm and saw some pretty good veins. So she prep me and I got my stuff via antecubital vein. 

So the odds are that my next infusion, it will be another IV in the arms or hand if I can, we will be looking into PICC but for right now I think we'll do the regular IV method. 

As of June 21st, there hadn't been much set in motion about getting an ultrasound or anything done. I will share details when I can. 

Friday, May 27, 2016

My Last Day

Well today May 27th, 2016 was my last day at Sacred Heart Hospital.

As much I would want to say that everything ran smoothly like it always does, but my Port has decided to be fussy today, either because of scar tissues or because my nurses were kind of hitting the wall of the port or just because this was my last day here that it wanted to be troubled.

After the much delay due to the Port, I was able to start my infusion with my port. One of the Radiology nurse that came up to examine my port kind of pressed down around my port and didn't feel anything out of the ordinary although she never seen me or have had me as a patient.

But Radiology/Oncology are the experts of ports, so we had decided to give another saline flush a try after waiting awhile and at that point I hadn't notice any discomfort like I was having earlier, she didn't see anything while doing the small saline flush. But since I didn't feel any discomfort when she had pressed down and Saline flush was going in that we wonder if the needle got a little lodge in a space where it's more dense that where it should ordinary be.

I have a 15 year old port so I have an old version of a port that probably most people don't even have anymore so that space of the wall where its more denser could have very well had been the issue for the difficult access.

We tried a few minutes with IV saline and no discomfort had came, so we decided to make the jump and start my infusion. I did start much much later than usual and kind of slowly gradually bumped my rate.

So while my port doesn't show anything weird in appearance and it doesn't feel weird other than it's sore from all the poking. It look just fine and normal.

So in retrospect of doing a minor goodbye, I had called my dad to come and be here when we were trying to figure out the next step after I had finally got access got great blood return but was feeling that discomfort. He brought in CAKE!!!

While on the phone with my aunt the other day to wish her a happy birthday, I told her that I really wanted to bring in a cake for everyone on Short stay but I didn't think there was no way to get it ordered and ready in time, but my sneaky Dad actually overheard my conversation and put in the order right away.

I had made some business cards for everyone to take and to keep in touch with me, and made a Thank You card (which I did not take a photo of, but in all honestly I made it so last minute). So overall it was a day of goodbyes, but I hope that one day that I can return to Sacred Heart.

But I do plan to drop by every once in awhile just because these are people that have known me for years so I can't possibly just not stop by, I do it with my High school because some of my former teachers still works there and they were teachers that were really like touched by me as a young teenage girl.

So after all that been said and done today, it's sad that I have to go somewhere else because of my insurance. But I'm glad to have known every single one of the nurses on short stay for the past 5 years.

So until next time everyone!

Wednesday, May 25, 2016


Well for the first time in 17/18 years, I am forced to make an sudden transition.

And no it's not about Sub-Q, it's actually about where I go to do my infusion . . . In April I've gotten a letter from both my insurance and my hospital saying that they are reviewing their contract and the decision wouldn't be made until the 30th of April. However I only had one infusion in the month of April, so May was of concern because I have two.

Well after I had my first infusion of May, I get a letter from the hospital saying that my insurance and them have terminate their contract with one another. What that meant was that anytime after May that everything will be out of network.

Now in late April, I did tour another facility that was in network with my insurance (for now) and my dad and I had to reach out to them about me coming in for my first infusion in June, since I already have my appointment for my next infusion set-up at the hospital later this May and according to my Mom (who I'm under insurance with her) Human Resources said that we're covered for the month of May.

But now everything is needed in order for this other facility to be prepare for me in June, luckily I only have one infusion that month as well. It's unfair to myself and to other patients and employees even that they now have to seek out another place, seek out another doctor that is in-network.

We're working hard on making sure that the other facility has everything they need in order to take care of me during my infusion and that they have all the supplies for my infusion(s), since I'll be going there from June to the Future.

Usually I'm a very positive person but when it comes with insurance, there's too many WRONG things that they do that doesn't help me or to anyone for that matters. Even my Cousin who works for United Health, hates the system. He had more than one incident trips to the ER or Urgent Care and get Billed for so much when really he had one or two things that he needed but they billed him for many tiny things like just going to the ER/Urgent care. He even posted a youtube video about what the bill really is when you go to the hospital just to have your child.

I'm attaching the youtube video in case anyone is curious

I'm sure my Transition will go smoothly but I'm leaving a family that's been my family for 17 years, I won't see this family maybe for a year, two years or maybe forever. I'm sure I'll go through another transition again later down the road, but it's just hard.

It's hard to say goodbye.

I'm working hard to make my last day with them memorable and giving them a way to keep in touch with me because I know I've touch their lives in one way or another, I'm someone that they'll never forget.  I hope that maybe one day I can go back there, but it clearly unknown if I can or not.

Wednesday, March 9, 2016



This is all opinions and my perceptive on motherhood.  I have not experienced Motherhood yet. 

Living with a condition that affects your life in a big way and you wonder how would that affect some things down the road that you want to have like Motherhood for example. 

For me I know I've always wanted children, when I first said I wanted children I never even consider all of my conditions that I have because really . . . In all honesty? I don't let that stop me, I don't let it stop me from going to college, I don't let that stop me from doing anything. 

Here's a common question: Can I pass CVID down to my children? 

In my opinion NO but genetics plays a role in what your children get, half from you and half from your spouse. When I got sick as a baby naturally my parents worried that there might have been something they didn't know which is why we saw a genetic person (this was over 20 years ago) and that didn't tell us much but again genetic wasn't as sophisticated back then as it is now.  

Now genetics are being studied on more and more, answers are being solved and better treatment are being created. Another thing to keep in mind CVID is not proven to be hereditary, if it was then that changes my whole answer about passing CVID down to your children. 

Still don't sound convince? That's okay I'm not writing this to convince you, I'm writing this so you can read one person's point of view and mine is quite large. 

So what can you do? 
The first and foremost is to try and plan your pregnancy, if you're just getting diagnosed and is "sick" you don't want to become pregnant at this time. I know there's that saying things don't always work out when you plan but for me in my mind planning helps. Planning prepares me in what would be the goals in maintaining an healthy pregnancy as well keeping myself healthy. Like if I could and was with someone committed I would try to get pregnant now because I'm in the best health that I can be in.

I plan to do genetics testing before I have kids; this won't change me wanting to have them but again to see what may or may not be passed down from myself and my spouse.  I think we would both want to know percentages even when it won't interfere the decisions of having kids.

IVIG/Sub-Q facts 
If you're one of those that don't always like having their IVIGSub-Q because of the side effects, well you will have to expect to do more when you're pregnant. Doctors wants to make sure that not only you are being care for but also the baby because the baby thrives on your system to keep it healthy.

The Pregnancy Process
I'm sure you'll be seeing an high risk OB/GYN because of your condition and would want to be monitor closely.  I would expect it to be the same for me so unless your immunologist is comfortable with you seeing an regular OB/GYN and the OB/GYN is comfortable seeing you without feeling that you're out of their experiences.

You will be doing a lot more than your average first time mom-to-be because our bodies doesn't work the way it's supposed to. 

The one thing I would suggest after having the baby is to STAY on TOP with your IGG levels and IVIGs or Sub-Q because you may not feel sick but you could secretly be sick because your follow ups fell through the cracks because you had a baby. Having a baby can do a lot to your body, so it's important that once the baby is here you are on top of your health.

2 Cents Remarks

Honestly don't let anyone's else opinion stop you from having kids, because the way I think is this: I don't care about anyone's opinion and if someone does say something, I would say that's your opinion but your opinion is wrong and jaded.

Keep in mind you will probably get the 2 cents remarks from a lot of people, even your own friends and family. But just remember that they aren't the one living with your conditions and even if your closest closest family/friends say something just try to forgive them for that momentary relapse.

I know there's a lot that I wish I could offer as advice/suggestions but again we all grow wiser as we go through certain experiences. But you can guarantee that when it comes time for me to have that wonderful experience I will be very open with it.

Keep in mind for that webinar
"Family Planning and PI" on
August 24, 2016 | 8:00pm ET 

You might gain some insight from the speakers and other people that tunes in.