Twiddling My Thumbs

Well....I am playing the waiting game now. I finished my last pre-transplant test a couple of days ago. (Honestly....it was just a pap needing to be done, but they still need a current pap test record from the past year and I was overdue by 3 months) I am still waiting on the results to forward to MUSC, but it won't be too much longer before I am up for review to be "officially" accepted.

I did get an email from my transplant coordinator that stated the surgeon's notes (Dr. Millgillacuddy AKA Dr. MillgillaDREAMY) and all my blood testing came back favorable. Woo-Hoo! I feel a bit better about the whole "afraid of being overlooked because of Sjogrens" thing I was feeling. I mean I think I have a higher possibility than most of rejecting the kidney. I am probably wrong because I know the immniosuppressant drugs can be adjusted to each person. Anyone know about this? I'll have to research it better, but I do believe I have read this somewhere.

Also, anyone else doing a renal diet? Any tips? I am doing OK with it, but I know I haven't been as strict as I need to be.

I'll quit rambling now....just one of those days....

The Renal Diet...

I spoke to the nutritionist and everything I thought I was doing healthy for me....was wrong! I can no longer have whole grain foods or wheat. I can't eat bananas, spinach, and other "healthy" foods.

What kind of diet is this you ask?? It is a the renal diet and it is confusing as heck. It is basically a low sodium, low potassium, low phosphorus, and low protein diet. A good resource for me is a website called Davita. Here are some facts from their website.

"The goal of the CKD non-dialysis diet is to preserve existing kidney function to delay the later stages of CKD, particularly stage 5, which is also called end stage renal disease (ESRD). This is the stage when dialysis or transplant becomes necessary in order to live".

I am labeled as ESRD, but we are trying to squeeze every ounce of life out of my kidneys and avoid dialysis. We are looking for a live donor before my kidneys completely fail.

Surprisingly, foods that are big no-no's are oranges, beans, pumpkin, tomatoes,squash, kiwi, anything whole wheat or grain, potatoes, and any dairy product. There are many more listed on the website too. Not so surprising is chocolate and any "cola" soda. I can have sprite, ginger ale, or other light colored beverages.

I will write more about it this diet soon as I learn more about it.

The social worker looking me over

I also met with a social worker briefly. She asked a bunch of different questions related to mental health and who would be my primary caregiver.

Social worker: "How do you handle stress?"

Me: "I think pretty good, although my husband would think otherwise this morning."

(the social worker gave me the ole' one eyebrow up trick)

Me: "He wanted me to read a map to get here....how can you read a map if you don't know where you are on the map? Needless to say we had an interesting chat" I chuckled. She agreed with me.

Of course she asked me if I did drugs, smoked, drank alchohol, took pills for mental health, etc. etc. Do we have transportation? Do I take my medicine regularly? Have I ever missed taking my medicine? A lot of the questions overlapped a bit.

I handed her some papers to fill out for the National Transplant Assistance Fund. She said she would fill them out and mail them back to me so I can start fundraising.

I guess I passed her test.....she asked me to be part of a support group she was putting together for transplant patients. (I told her I enjoy talking to others about this and mentioned my blog)

Next....was the nutritionist....and the renal diet!

21 tubes of blood on the wall.....

21 tubes of blood.....take one down and pass it around.....2o tubes of blood on the wall. That is no typo.....they took 21 tubes of blood from me yesterday! I talked to many people yesterday....I suppose the most amusing was Dr. Millgillacuddy.

I am not joking....that is his name. You are probably thinking he looks like the classic "nerdy" Doc. You are so wrong! With a name like that you have to be handsome and have a great smile. (Can I think of that about my Transplant Doc?) Let's just say he is easy on the eyes. OK...now for the serious stuff!

I'll probably have to break this down into a few segments over the course of the next week. There was a lot of info... I'll start with my first appointment of the morning and go from there.

My first appointment was with the Transplant Doctor at MUSC. Like I said his name is Dr. Millgillacuddy. He asked me a few questions about my health and immediate family's health. He then gave his dialysis vs. transplant speech. The pros and cons and the risks. As with ANY surgery there are risks....of course that scares the heck out of me, but I know I will be in good hands. He talked about the actual surgery and how they hook the new kidney to the two main veins that run down into your leg. I will have three kidneys instead of 2. I know that it is important for me to try and get a live donor....but it really sank in on how important for me at this stage in my life to get a live donor match. *** a side note is that I gave 5 more people's names to the transplant team. 3 of whom are people I don't even know. They are friend's of friends and a coworker of my sister. I cannot express the overwhelming gratitude I have for them.

I found something else Dr. Millgillacuddy said interesting. He said it was very unusual to have someone like me come in before I am on dialysis. Most of the patients they see are on dialysis or have been for quite some time. He also said they prefer to get candidates like me. This is the best scenario for transplant. If your GFR is 20 or below YOU CAN BE PUT ON THE TRANSPLANT LIST! We need to educate patients that have poor kidney function on this. My Nephrologists here at home NEVER suggested this way. I WAS THE ONE THAT INQUIRED. I cannot stress how important it is to make sure you know what is going on with your health. Yes....listen to your Doctors, but it doesn't hurt to question them or be a part of your own solution. Many Doctor's I meet think what is best for the majority of patients is best for you. Not always true. If you can build a good relationship with your Doctors (meaning you listen to their advice and they listen to your advice) it is a win-win situation.

I really have liked everyone I have come in contact with at MUSC. They like questions and they like patient's to be involved with their own health concerns. Maybe it is because they are a teaching university....I don't know. I do know I am comfortable with the staff there and not afraid of asking "why?"

BTW...did any of you catch House last night. The patient had Sjogren's Syndrome. I only caught the last 15 minutes. Was it a good interpretation of the disease?

I am back from vacation!!

Well.....I made it back! I am exhausted. It was well worth it. I took so many pictures of the Fall foliage in New England. Absolutely breath taking! I will post them later this week.

I go to MUSC tomorrow to be evaluated by the transplant team. Say a prayer that I am officially accepted into their program. I still won't know if I will be until probably the end of the month or so.

I am a little nervous, but glad this day is coming. I have to get a few random tests done like an EKG, Lung Scan, lab work, and a couple other things. My hubs is going with me too. :)

As soon as I can I will have tons to update you all with. Can you say Information Overload!

Time to Toot My Horn!!

OK....I can't help but not be proud of this. Sjogrens and me is now featured on Wellsphere. (Click on the sidebar for the link) This is a great resource of about 1400 health professionals and real people writing about health and wellness issues from across the world. There is something for anyone. My other blog 2 Lil Pumpkins is also featured in the parenting community with nearly 120 other parents.

With Wellsphere's help, I feel like my voice is being heard about Sjogren's Syndrome and kidney disease. It has opened a new door in educating others on what Sjogren's can do to a much wider audience.

I was asked by Dr. Geoff Rutledge to be part of this community. He is the main guru for Wellsphere. I am guessing he saw my blog through Julia at Reasonably Well. She is also a Health Blogger on there.

Rule Of Three

Valerie at Professional Patient wrote a post on the Rule of Three. She wrote some points that I felt were worth mentioning here.

The greatest challenge in my life with chronic illness is energy management - how to live my fatigue-ridden life without overdoing it. It is an absolute bear, because I can feel wonderful one day, and do more than usual (having been gifted with extra energy), only to pay and pay and pay in the days that follow. It's like there's an invisible line between doing enough and doing too much, and I never seem to know that I've crossed it until it's too late. And to keep things really interesting, the line moves each day. For example, some days, I can do three loads of laundry and feel fine, while other days, just carrying a single load of laundry to the basement leaves me exhausted and in pain for days or even weeks at a time.

In many ways, managing your energy while living with a chronic illness seems like managing your sobriety while you're drinking with friends. You think you're doing fine, only to get one hell of a hangover the next day.


The Rule of Three


Recently, I received some sage advice from a person who has Sjogren's Syndrome, and it has already helped me navigate through a week at the beach without overdoing it! (Normally, I crawl home from vacations and hop right into bed because I'm so tired.) I call it the "Rule of Three": there are three parts to any day (morning, afternoon, and evening), and you can only do two of them. It's so simple, yet deceptively powerful. Your third part of your day is for resting, plain and simple.

I am going to follow this advice as well since I will soon be going on vacation.