Oh so close

So there's a little slow down in getting back on the list. I have to have 1 more test - the dreaded colonoscopy... because I am anemic and blood was found in a guaiac test they have to make sure there is no underlying issue. I had an upper endoscopy done last Friday and I received the results today - remarkable!! Yeah that is what was sent as a result - remarkable. I have never heard results stated like that before, but I have never doubted that I am remarkable!!

I was a little disheartened when on Thursday, my nephrologist said I had to do the colonoscopy. Not because I have to do the test, but because I have to wait to officially be listed until the test is completed, just one more thing I guess.

The good news is that I am not quite to the point of dialysis yet, even though I am only about 10% kidney function, he thinks we can hold off a little longer. Every time I go in, I expect him to say it is time. When it was time to schedule my next appointment, he said 4 weeks then changed it to 6 weeks!! I see that as a good sign. We have scheduled a tour of the dialysis unit though. I did a tour 10 years ago, but we thought it would be a good idea to go through again, and this gives Torre a chance to see what it is like.

I have already decided to do Peritoneal Dialysis (PD) rather than Hemo Dialysis (Hemo). It will give me a little more flexibility since I can do it at home, and dietary restrictions are not what it would be with Hemo.

The plan at this point is to wait until my kidney function is a little less than 5%, this way the transition will be a "little" easier and I will not be to the point of getting really sick and concentration levels will still be a bit in tact.

All in all I feel pretty good and my nephrologist seems to be satisfied with my current condition. I am not retaining water and I have actually gained weight (most people at this point start losing significant weight). I think if we could get my hemoglobin back up to normal levels (currently at 7.4, which if it were at 10 that would be great) I would feel great!!

For now I'll just take it 1 day at a time and see what happens!!!

Things people say...

I have found it hard to be surprised at the things some people say anymore. I had my consult with my transplant center yesterday and there was a gentleman in the room making comments about the care of his wife. It seemed easier for him to complain about the lack of his knowledge rather than taking the time to educate himself.

I try not to pay too much attention to these types of comments, but when the room is quiet and someone is talking in the volume as if they want you to hear them it gets a little hard to ignore it. It seems his primary concern was why did his wife have to do dialysis 3 times a week rather than 2 times a week and why does she have to be on such a stringent diet and why can't she drink too many fluids and on and on and on. He even made the comment that "when the doctor sees me, he turns the other way and runs"

There is no doubt in my mind that with his wife being on dialysis for the better part of a year that the information has been provided, it's just he either did not understand what they were saying, or he was not paying attention. I don't know, maybe he does understand, but just does not like the answer given to him. I am sure that if I was the doctor, and he was talking to me that way I would probably run too!!

I have not always understood the things that the doctors have told me or even liked it, but I have accepted that this is a part of my life whether I like it or not. The one answer that I would like, is why (or how) did this happen to me. Although I do not like the answer, I have accepted that I will probably never know. I really want to know more to help prevent this from happening to my family.

The one thing I can do is educate myself and hopefully be a resource to others for what I am experiencing. I enjoy helping people understand the process of transplantation and volunteer my story to people that are willing to listen. I encourage everyone to get educated, not only about transplantation, but things you want to know about.

It may be easier to complain about not having knowledge than to take the time to educate yourself, but when you take the time to become educated yourself, you will understand it a lot more than if someone were to explain it to you... at least that is the case for me!!

Things to (not) look forward to

The symptoms of Renal Failure (Kidney):

-Fatigue and weakness (from anemia or accumulation of waste products in the body)
-Loss of appetite, nausea, and vomiting
-Need to urinate frequently, especially at night
-Swelling of the legs and puffiness around the eyes (fluid retention)
-Itching, easy bruising and pale skin (from anemia)
-Headaches, numbness in the feet or hands, disturbed sleep, altered mental status and restless legs syndrome
-High blood pressure, chest pain
-Shortness of breath from fluid in the lungs
-Bleeding (poor blood clotting)
-Bone pain and fractures
-Decreased sexual interest and erectile dysfunction

With my first transplant, I was really not that well educated as to what would happen, and my transplant came so quickly, I am not sure I even realized what symptoms I had. This time around, a little more educated on the matter I have noticed some of the changes taking place.

At least for me, these are not all of a sudden things that are taking place, but rather gradual symptoms that I sometimes don't even realize until someone asks or I read about it somewhere. For example, fatigue and weakness, there are some days that are better than others, but walking up a flight of stairs I do notice that I am out of breath. High blood pressure, have had somewhat since the first transplant and take medications for it on a daily basis.

I have recently started to notice a little numbness in my hands and feet at different times and headaches more recently, and again did not know they were symptoms until a few days ago. I am fortunate in that I still have an appetite and am not nauseous unless I do not eat.

I am sure as this progresses I will notice more and more, of the symptoms and on a larger scale than what I do now. I am not sure what the trigger point will be for dialysis since there are a variety of factors that go into it. For example, how I am feeling and how I am tolerating how I am feeling; my blood levels etc.

Since I was not on dialysis last time, I am not really sure what it is like, but I have done the research into the different types and the pros and cons of each. I would like to stay off dialysis as long as possible, but just now getting onto the transplant list with the wait just under 2 years, I have come to the realization that it is a matter of time before the Dr. suggests it.

We will see what happens in the time ahead, I have a lot of angels and prayers, (which are always welcome), last time, I was only on the waiting list around 30 days and I subscribe to the thought that things happen for a reason. For now I have a positive attitude and a great support system!!!

I did it!!

So I did it, I started a blog. Really a lot easier than I thought it would be. I have no official agenda, just some place to put down my life experiences.

I have always wanted to write a book, so as a replacement, thought I would blog instead.

A little about me, My name is Marc Summers and I am married with 2 children. My wife's name is Torre and I have a daughter Marin and a son Tucker. I live in Columbus, OH and work in the financial services industry.

This March will be my 10 year anniversary of my kidney transplant. Unfortunately, my transplanted kidney is failing, so I need another one. You can check the story of my first transplant at www.lifelineofohio.org.

That is all for now... the journey has begun!!!