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Archive for February, 2010

The Graft is Fine!

February 22, 2010 Leave a comment

Well Saturday was “Graft Checkup Day”…

It took about an hour for the history to be taken and have the ultrasound done! But the Doctor said that Mark’s graft was clear with not problems!! He is good for another 3 months (we got back in May)!!!

Always nice to have good news, ya know? This whole process is hard enough without having complications along the way!

Now we have to get through a stormy weather week here in NJ. We have snow/rain/sleet/ice predicted for most of the week. That always makes dialysis fun. Late nights, bad weather, latecomers to the dialysis center….

And if the weather is bad, they shorten the sessions to three hours — and often move people around (switching days, closing the facility during a snow storm). And it can cause havoc on our schedule!! But we will endure!!!

On to a new week!!!

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Categories: kidney disease

Early Morning Visit to the Access Center

February 20, 2010 Leave a comment

Well an 8am appointment at the Access Care Physicians in Union. This is the first visit to this facility. Previously we went to the facility in West Orange. We switched because this office is much closer to home.

Mark is here for his 4 month re-check of his graft after suffering a blockage. I am not sure what causes the blockage. Hopefully the graft will be clear with no problems. They say it can block for no reason. Nice huh?

If Mark had a fistula instead of a graft, there would be less problems. The vascular surgeon could not do the fistula because Mark does not have good veins for it.

I have learned more about kidney disease than I ever wanted to learn. There are some startling statistics about kidney disease. It appears to be on the rise. In fact I have a close friend who told me that she is suffering from Chronic Kidney Disease.

So now we wait while Mark’s access gets checked. It seems like it is all a bunch of waiting. Tom Petty says the waiting is the hardest part. I have to agree with him!!! I have never been good with waiting! Patience most definitely is a virtue, and it is one that I often lack! Someone once told me that I suffer from IGS – better known as Instant Gratification Syndrome. I prefer to call it, “I want it, and I want it now!!!” Syndrome! LOL

Just an observation, but how did I ever survive before cell phones, email, internet, and technology? What would I do without my Blackberry? I completely get why it is called a Crackberry! This thing is addicting! I can keep in touch all the time! I think the best part is being able to surf the internet while waiting. We already know how I am with waiting. This kills time and keeps me a bit productive. At least blogging on my Blackbeer is something that keeps my brain active until Mark is done. My other alternative is to check Facebook! As a technology lover (think borderline geek), I am sitting here blogging on my Blackberry and listening to my IPod. How did I amuse myself years ago before I was connected? Did I actually have to sit with my own thoughts? Did I really sit quietly and just wait? Hmmm, the more I think about it, the more I am sure I didn’t do that!!

Alright….how much more time until Mark is done? I am getting sleepy and I need more coffee! And breakfast would be nice too!

We will go get groceries after we leave here. I wonder if I can fit a nap into the day? Yawn…. More waiting… Sigh!!

12:45PM
Well we are home!! The access care center did an ultrasound of Mark’s graft and all is fine!! The blood flow is good and the graft is clear!! Woo hoo!! He will need to go back in 3 months for a check — unless he has a problem!!

Errands are done… and I convinced Mark that we need a nap!! Life is good!! 🙂

Categories: kidney disease

She is BACK!! Finally an update from me!

February 18, 2010 3 comments

Well it sure has been a LONG time since I wrote a blog entry! I am not exactly sure what happened, but I would have to guess that life just got busy!

I was gently reminded that I had not written in a long time by a reader who wanted to know how Mark’s gallbladder surgery went!

So I will now attempt to catch you all up with what has been going on. I also am making a personal note to myself to get on the ball and be better with updates!

Mark had his gallbladder surgery in November.. The surgery went well, and lasted about an hour. Mark was in recovery for almost 3 hours because they had to wait for a room in the hospital. He had very little pain from his surgery, and his biggest problem was the throat pain he had from the intubation tube that they used during anesthesia. I was surprisingly calm through all of this, which is completely out of my realm since I am a natural worrier about every little thing.

He stayed in the hospital overnight, and came home Saturday. We got chinese food for lunch…. that is how good he felt.

He had very minimal pain at the surgery site except for a slight pain when he was lying on his side. His indigestion and bloating… and nausea are gone!!! He has minimal problems when he eats very high fat foods. He has been good with that lately so it keeps any problems at bay. When he went back for his followup with the surgeon, he was given a clean bill of health (or as clean as he can get with all of his other issues).

On December 1, he went back to work after being out since June (when school let out for the summer). He did surprisingly well in the beginning. He is now teaching Computer Literacy to 3rd, 4th and 5th graders. He really likes it. He even likes his mandatory lunch duty where he supervises the “babies” which are children in Kindergarten and First Grade.

He says that teaching is not as physically demanding (more mental) than the Technology Coordinator job that he had. That was a lot of stress and physical labor which when you are feeling bad to begin with, must be hell to deal with. He used to teach when we first met (over 10 years ago), and he told me that he forgot just how much he enjoyed working with the children. He is very glad that he went back to work. He has been feeling pretty good these days. We have adjusted to the new schedule. I am sure that working all day and doing the dialysis three nights a week makes for some long days. But Mark never complains about it. I think that is because he knows the dialysis is making him feel so good and not as tired (or should I say exhausted) as he used to be where he would fall asleep constantly.

On December 3, we went to Robert Wood Johnson Hospital for his meeting with the Kidney and Transplant Center . It was VERY informative, and I am very glad that I went with him. We met with a Nurse Coordinator, Nephrologist, Registered Dietician, Social Worker, transplant surgeon, Financial Coordinator, and one of the directors of the Center. They were able to use a lot of his info from when he was in the hospital in May for his first dialysis such as his Nuclear Stress Test, Echocardiogram, EKG, etc. He did have to give 12 vials of blood for tissue typing and other tests. And he had a PA/LA chest x-ray (two views). He needs to lose another 20 lbs to be “Active” on the list. Once his tissue typing comes back, and IF all his tests show he is a good candidate, he will be put on the “Inactive List” (but still accruing time) until he loses the additional weight. If he wants a pancreas too, he will need to lose 50 more lbs. Studies show that the pancreas does not increase longevity or anything else.. and failure rates are actually pretty high, putting the patient back on insulin. He may decide that this is NOT the way to go.

He is also going for the Extended Criteria Donor (ECD) which will give him a better chance of getting a kidney from a “not so perfect donor” but still a screened and sufficiently functioning kidney. The wait list here in NJ is 5 years for the “perfect” kidney”…. But only 2-3 for an ECD! Not a bad trade-off!! I also learned that they will not remove his kidneys but put the third kidney in his front pelvis!! Very interesting.

Right before Christmas, we received a letter from Robert Wood Johnson… he was APPROVED as a candidate for the transplant, and was placed on the list for a kidney. Again, his status is inactive until he loses the rest of the weight, but he is accruing time on the list!! What a GREAT Christmas gift!!

We had a very low key holiday season. Neither of us were in the mood to go all out with gifts and decorating and visiting people, so we kept things to the bare minimum. It was actually MUCH less stress on both of us! I really enjoyed the quiet of the season instead of feeling like I was running around like a chicken with its head chopped off, We may have to do this again next year!!!

Now as we are two months into the new year, Mark has about 15 more pounds to go before we can go back to RWJ for a weigh in and check up. He has been trying to lose those last few pounds, but as anyone who is trying to lose weight knows, it is NOT easy.

Mark recently started medication for his phosphorus. They have been running a bit on the high side so they gave him a prescription for a phosphorus binder. I think it is due to his diet. While he is definitely eating healthier and much less food than he used to, he has been cheating on the “bad” foods. We have a list of “No No’s’ on the refrigerator that lists foods that are too high in phosphorus and potassium. The list also contains “bad protein”. Lately Mark has been a bit lax with the food choices he makes. He has been drinking Cola (a no no!!), such as chocolate, salt, some fast food, etc. But he eats it, but in moderation. His “report cards” were always well within normal limits. However he no longer shows them to me. I don’t want to nag him to see it, so I leave it alone especially since he is sooo close to the weight needed to get on the ACTIVE transplant list.

Now we are into February…. and things have been pretty good for us. I still worry a lot about him and us, and our future, but it is certainly not the way it was when he was first diagnosed with Kidney Failure. He is very positive about it all, and in some ways that does rub off on me to keep me from getting into a negative mode.

In fact, I have been feeling “normal” enough to get back on track with my own business ventures. I have been doing marketing again. I have been trying to tweak my website, add new features, and get into the “Social Media” thing to get my business name out there. I want to be more pro-active and productive in my business. I have really let it go, and my income from it certainly shows. Actually I should say lack of income because in all honesty, I have not done any work for quite a while. I can’t blame it all on Mark’s illness, but that was a good part of it for the past year. A lot of the reasons are my own fault, but at least I can realize and admit to that. The only income I have had was from web hosting contracts. And trust me, while it is a residual income each month, I will certainly not get rich from it. And recently, I have had problems with some of the hosting clients not paying their bills and bouncing checks. I have had to make some modifications to my business structure so better protect against this.

Anyway, this blog is not about me talking about my business, or pushing my web design/hosting stuff, so I will get back to the business at hand.

Mark and I are doing pretty well overall. I am feeling good. He is feeling good, and that makes for a happy home. We go to the Access Center on Saturday to just get his arm graft checked out to make sure it is working properly. I am not thrilled about being there at 8AM, but I will just suck it up and not complain! It is what it is!!!

Now that I have done this update, I am going to really try to keep up better. I had more comments than I thought I would from people who read this blog and wanted to know where I had been and what happened. I feel like I have let people down. I will do better!! I promise!!