HI

Hi,
I was going to tell you how my doc appts went. I went on Thursday 11/4 to all my transplant appts. I met with a kidney doc there and he said that my antibodies were at 99%, which is why I haven't been getting any phone calls to see if I am a match, even though I am probably at the top of the list for a k/p transplant.

There is a thing that he and his partner (who is my dialysis doc) want to try with me called the desensitization protocol. It is ta three step process that involves them 2. physically removing the antibodies by something similar to a dialysis treatment,, 2. chemically removing the antibodies (by getting an iv for 4-5 hours and 3. a new drug to tell my cells to stop reproducing antibodies (which is a 5 minute injection). For the 3. they have to write up a study and present it to not only the hospital board, but the drug company to see if they can try it on me as I am not sure it has even been done before. If all is approved, AND the insurance will pay for it, then I can start getting that done. The kidney doc that treats me at D is the one that would write up the study and present it, he said not only is it VERY expensive, it is a long process to get all that done. Since my antibodies are so high (99%) it is like having 100 people stand in front of me and only 1 person's organs would not immediately fail in me. If we can lower the antibodies, even to 80% or even 50%, then that would better my chances of getting a transplant. However, there is no guarantee that the protocol will work. A little or at all. So, it is a gamble, but I told the doctors that it is one I am willing to take. The longer I am on dialysis, the harder it is on my heart.

I have two more tests to do on 11/23 and 11/24 and I will be done with all my testing for the year. I am hoping all of this won't take more than 6 months, but you never know. I honestly, was never given a time frame, just that it takes a long time.

So, this is what all I have going on. At least I have hope and the D is keeping me going for now.

Thanks for reading along!

Love, Tracy :)

Hi! I am writing to tell you the latest info I have for you. A couple of weeks ago, I decided to move my testing for the transplant list from Baylor in Dallas to Baylor All Saints in Ft. Worth. It is a lot closer to where I live than the Dallas location. That means that I also have a new coordinator. His name is Shan. He is very nice and energetic and willing to answer any questions I have. He also informed me that my antibodies are 99%. I was like, they were only 89% after my transplant was taken out. He asked me some questions, which I answered no to, so he ended up saying, well sometimes they just go up. I was very upset. I actually bawled my eyes out.

So, I text my doctor that sees me at Dialysis and asked him if I am an impossible case to get another transplant. He said no, that we will talk about desensitization protocol. what??? So, I am supposed to find out today what that is. I hope it will put me closer to getting a kidney and pancreas!

My testing date for all the tests to stay on the transplant waiting list (that I have to do annually) is on November 4. So, that will be nice to have all of those complete!

I hope all is well with everyone. Take care and I'll keep you informed!

Love, Tracy :)

Hi,
It has been so long since I have written on here. I apologize. It has been a crazy time for sure. School has been busy and the hustle and bustle of the start up of the year has been fun! I am still going to dialysis 3 times a week. It has been mostly good. I tried going in the mornings on a day that I had off to see how I would do. Well, I didn't do so well. I couldn't do a thing the rest of the day except sleep! So, I now know that doing D at night and going home and straight to bed, is the best way for me to do it.

Katie has started 11th grade...no, I can't believe it either!! She is growing so fast and is so beautiful! I am amazed by her each and every day!

Red, our horse is going well. He had hurt his foot so we haven't been able to ride him lately. Hopefully, when it dries up some, we can. It has come a flood today! Lots of very needed rain. I just heard a report that we got 7" today. Wow! That is a lot of rain!

Well, I hope you are all well! Sorry it has taken me so long to write!

Love, Tracy :)

Hello

Hi,
I wanted to let you know that I am doing good. They (the dialysis center) tried the largest needles on me last week. It hurt so bad, I cried so hard and didn't quit for a long time. It was very traumatic. After the treatment was almost done, the technician came over to me and said that the nurse said we won't be using those large needles on me anymore. Those needles are used an 300 lb people and they don't need to use those on me and that I was ok using the medium needles. I was very happy to hear that. It took me a whole day to recover from that experience. It was awful.

For some reason I had gained almost 7 lbs in two days, so Wed they had to pull all that weight off of me. They actually took me too low and my feet cramped while I was on D. Then they cramped last night while I was trying to sleep. Trying was definitely the operative word there. I was so "dehydrated" feeling this morning when I woke up, I couldn't go into work right away. All of this is a learning curve for me for sure. Each treatment is so different.

Keith is building a fence on some land we are leasing for our horse Red. We bought a Tennessee Walker horse and like his name says, he is red. He is beautiful! We found 2 1/2 acres to lease about a 1/2 mile from our house. That is so great! The man that owns it said we could put a fence up and do anything we wanted, so Keith has been hard at work on that. We want to bring Red closer to us so we can take care of him and ride him when we want. He is very gentle and lets me hug on him all the time. He doesn't pull his head away or anything. He is very laid back. I haven't gotten to ride him yet, but hopefully soon!

I hope all of you are well! Take care!

Love, Tracy :)

Just Keep Swimming, Swimming, Swimming

Hi! I noticed it has been a while since I have written anything. I have been in survival mode it seems like. I started on D on May 14 and have been going strong ever since. I am on Hemo dialysis at a center in Grapevine. It is very close to work, but not close to home. I go on Mon, Wed and Friday's (I leave work at 3:30) and stay till 8pm usually. It has been a learning experience and I have been watching intently what they do to me. It is pretty wild actually! I have graduated up to the medium sized needles and am supposed to go up even one more to the large ones. I am scared about that. They say it is to get better clearance.

When I started all the stuff, my toxin level in my body was 116 (should be 0). Now I am running about 48. Hopefully the longer I am on D, the cleaner my blood will be and I will feel better and have even more energy back! I do already have some back, but I am not 100% for sure.

I see some very sick and old people there at the center. I try and smile and be happy around them. They look like they need a little hope or sunshine in their lives. It is sad. I wish I could sit and talk with each of them and find out their story.

One man in particular is in a wheel chair when I walk in the door to go in to where I get D done. He always has on a fedora and dressed as nice as he can. He has fake legs and has his nice shoes on them. He can walk, VERY SLOW, so he sits in a wheel chair. I love seeing him and smiling to him. He seems so nice.

Well, I hope you all are well. I am ready for whatever path God has me on.

Love, Tracy :)

Diaylsis and Me

Hello,

Well, I have been going to Dialysis now for about 2 weeks. They are still pulling water off of me and trying to find my "Dry Weight". It is leaving me pretty dehydrated, but I am surviving. I am praying for a kidney/pancreas SOON. That would be a blessing. It is different settling into this type of routine. I don't see Keith and Katie much as I don't get home on Mon, Wed, and Fri till 9:15 or so and am so tired, that I just collapse in bed. It is not much for family time, but I do feel better mostly. They are trying to watch my blood pressure and now I feel dehydrated, so we may need to look at that. They said I am doing good as far as only gaining one kilogram per day. They said that is the best so it won't be so hard on my body when I do D.

On a happier note, Keith and I bought a horse. It is a 14 year old male and he is copper in color. He is an experience Field Trial Horse,which is what Keith was wanting.

Katie is doing good. She is looking for a summer job and has interviewed with a Doggie Day care. So that would be neat for her. She should find out tomorrow is she gets it or not.

I hope everyone is blessed and highly favored that reads this.

Love, Tracy :)

Big D

Hello,

I am writing to tell you what has been going on in my life. I have begun Dialysis (Big D). I went to see my kidney doc last week for a check up and he told me it was time. So, he admitted me in the hospital on Friday and I stayed there till Tuesday. They started me on dialysis, I had 3 treatments while in there. I had my first in center treatment on Wed., with my second one being today. It wasn't bad in the hospital, but was nightmarish on Wed. I hope today is better. My blood pressure is extremely low now, so I have to watch it closely. I have quit taking my bp meds and water pills, to make sure it doesn't pull it down further. It was 87/53 today. Kinda crazy. I do feel better though. The toxins were pretty bad in my body. Should have been 0 and mine were up to 116. Last I heard, they were down to 49, so I am getting better.

I just wanted to keep you all updated!

Thanks for reading along. Love, Tracy :)

Beautiful Day

Hello! I am a little over a week out from my eye surgery. It is amazing how bright everything is. I had no idea how yellow and dingy the cataract made everything look. It has been wonderful to have a clear outlook on things. :) I do not wear glasses anymore, but do wear a contact in the right eye. It is amazing!! I am ready to have the other eye done. The surgeon said I was NOT a candidate for lasix or crystal lens, but this will help. Boy did it!!!

The anesthesia made me very ill. VERY. But, I survived!

I go today to get a procrit and am in need on it pretty bad. Pretty wild that I am so happy about getting a shot! I used to hate them, but now I am like WooHoo...energy!!!

I hope everyone has a blessed week!

Tracy :)

Happy Spring

Hello,

Tomorrow is the big eye surgery. I am a little anxious about someone cutting on my eye, but the rest afterwards, will be very appreciated. I have been feeling a bit run down lately, but I got my procrit shot on Monday, so I should perk up a little bit this week.

The surgery tomorrow will involve putting me to sleep, removing a cataract from my left eye and doing some laser on my right eye. Not sure what sort of eye sight I will have when it is all said and done. I know that my current glasses/sun-glasses will not work anymore. That should be interesting.

My fistula in my left arm has healed up very good and is now ready to be used. I went to see the kidney doctor last week and he said that he wanted me to up my lasix (water pill) to pull some of the water off of me that I am retaining. My breathing is not as easy as it has always been and I am pretty tired. BUT, the extra pills are definitely helping me. I do feel different. Not as swollen.

My arm is still numb on the bottom, but I can straighten my arm, which is good.

I am missing my Dad very much. It has been a tough week. I hope you all have a blessed week and weekend.

Love, Tracy :)

I have some things scheduled in April for my eye. I will be having a cataract removed on 4/15. I have to have an EKG and blood work done and also go to the surgeon to have my eye measured all before 4/15. Lots to do! The Retina doctor said I need to go ahead and have it removed as it is a dense cataract and while I am out, he will do laser treatments on my right eye because some vessels are growing a little too much and he wants to cauterize them. I have had that done several times in my left eye, but not in my right eye. So, it will be interesting to "see" how everything goes. heehee.

Have a blessed day! Tracy :)

Spring is Here!!

Hello! Wanted to let everyone know what all happened over Spring Break. I had a procrit shot (as I do every other week) to help with my anemia. Usually I feel really good after these shots, at least for the first week. I didn't have that good feeling this time. Kinda strange. On Wednesday, I went to Dallas to see the surgeon that did my fistula. He said I had the Cadillac of fistula's and that it looked really good. That it will grow as time goes on and get bigger and stronger.

Friday, Christie took me to my Retina doctor as a follow up to some laser treatments I had in his office in January. He said I need some heavier duty laser in my right eye (my good eye). He said we really need to get that cataract off your left eye too. Why don't we schedule the surgery to have the cataract removed and while you are under, I will do the laser treatment to the right eye. So, I said ok. He will call me this week to tell me when I am scheduled for the surgery. I don't really want to do this, but know my eyesight will only get better after doing the surgery.

The week went by fast, even though I didn't have any big plans. It was restful and relaxing, which I needed.

I hope everyone else had a great week too! Thanks! Talk soon!

Tracy :)

Fistula

Hello,

I had my fistula put in on Friday 2/26. Dr. Dickerman did it at Harris Methodist Hospital in Dallas. I hadn't been to that hospital before. It was a day surgery, but to me, was a major. It was a lot worse than I expected. Glad that is over with. I missed several days of work, just trying to get my stamina back. Today is my first day back for a full day. The doc actually had to cut my muscle to get a vein to put with an artery to make a BIG artery. When that matures (in 6wks to 3 months) I supposed I will start dialysis then.

The even bigger news is that I got engaged last weekend. Keith asked me to be his wife and I said YES!!! I am so happy and comfortable; a wonderful experience. We are going to wait until I feel a little better before we set a date. Hopefully soon!!!

Thanks for reading!

Tracy :)

Hello,
Just wanted to tell you about my doc appt yesterday. It was very interesting. As far as the appt goes, he wants me to have a vein mapping sonogram to see what veins/arteries are good ones to use. He said I seem to have good veins and he showed me 3 places he could tie them up to make the fistula.
The other interesting thing is he is with the Methodist hospital systems. I am listed with Baylor. He REALLY would like to see me get on with Methodist. He said I was the 3rd patient he's seen this week that had trouble with Baylor (ie failing transplant). He told me I should make an appt with a surgeon over there and ask some questions. I told him I would hope to use the head guy. I told him the guys name and he said, I trained him! So, it was quite a weird situation. I am praying that God will guide me to go where HE wants me to go. I felt a little confused about it. I just let go and let God.
I appreciate all of you guys so much and wanted you to know what all was going on.
Love, Tracy :)

Today's Appt

Hello! Today is an appt with the vascular surgeon to see if he thinks I am ready to get a fistula put in. I am a little anxious about the appt, but know I need to go. My kidney doctor thinks I should go ahead and get it done, so my body will be ready when/if I need dialysis. I am not sure if it is out patient surgery or what. I think it might be. Will find out more at 4:30 today.



I found a website that I think everyone who deals with kidney/dialysis, etc should look at. It is called I hate Dialysis.com. It has been very informative and helpful to me. Sometimes it is funny.

I hope everyone is doing good who reads this. Will let you know how the appt goes.

Tracy :)

1 year ago yesterday

I went to my kidney doc yesterday. I am staying the same, with my kidneys functioning at 15-20 %. He is going to schedule me an appt for a consultation with a vascular surgeon to put a fistula in my arm for dialysis. I am not needing it yet, but he wants me to he prepared. So, I guess it is the next step. It is just a consultation to see if the surgeon agrees with my doctor about the timing of getting it done. He said the fistula can stay for the rest of my life and if I ever need dialysis along the way, it is there and ready. Kinda reminds me of Steel Magnolias when Julia Roberts had the veins swollen on her arms. I guess that is why I have always hesitated. But, I'll be fine.

Keep On Keeping On

Today is Jan. 12. In two more days, it will have been one year since I had my first transplant call. Seems like forever ago. I called my transplant coordinator yesterday to make sure everything was ok. She said I still need to do a mammogram and a pap. I said I did those in November. So, I had to do some calling to get that re-faxed and to the coordinator. Glad I checked on it. The coordinator said that at their Friday meeting, everyone was saying how we haven't done any kp's lately. (Kidney/Pancreas Transplants) She told me that they agreed the donors are just not coming in right now, but soon there will be a wave of them and more transplants will be done. Not to worry.

I have been trying to clean out my Dad's house with Keith and Christie. They have been a huge help to me. And Dad's best friend Lonnie and his Dad Earnest. They have been also a huge help. It is weird. I just go ahead and talk to Dad like he is there. Sometimes I even feel like I am arguing with him about things. Then I laugh. I feel at peace with Dad. I know he is in heaven with his Mom. I saw him dancing Disco up there. He was so happy. :)

I hope everyone is having a great start to the new year. 2010 is going to be a great year!! I just know it!

Love, Tracy :)