First Cameron, My kidney specialist told me that to be the donor of a kidney is a very major surgery and much more challenging to recover from than to recover from the surgery of the recipient. To get the kidney, they have to go in from the front. The kidney is located quite high in the back of the body. The internal stress on her body as they moved everything around to get at the kidney causes tremendous soreness to overcome and heal, let alone the trauma of the actual surgical procedure to disconnect the organ. Dr. Haderlie was one of the doctors consulted by Cameron's doctors to be sure that what I am experiencing is not hereditary. The first picture is of Cameron and the youngest of her five. It was taken this past Christmas. The next picture is the gift of life Cameron gave. The doctor is holding the kidney while the nurse snapped the shot.
Cameron returned home yesterday at noon. Before she left the hospital, she got to see Larissa who had received her kidney. It is hoped that Larissa will be released today. Her creatinine levels are now better than Cameron's! We pray for successful reception of the kidney.
Cameron said the ride home was very rough and exhausting. She sounds as weak as a kitten but is genuinely doing well for the reality of what she is dealing with. Collins and the children are supportive and very good to her. Five year old Isaac is really feeling the stress of having his mother gone for a bit and could use some extra prayers in his behalf. Felicity is still not fully recovered from RSV and pneumonia but she is not contagious or running a fever any more - just some residual lung weakness. Gideon and Jonah peek in to have short visits with their mom which has been very nurturing for her.
Collins' mother Sheila is with the family through the next while. She is wonderful with the children and brings a tremendous calming effect in the home. She is also a master organizer and just a delightful soul. Her smile is beautifully reflected in her eyes which tend to light up a room. What a blessing she is! Cameron also has an incredible support team through her ward family and neighbors and friends.
When Cameron called today, she said she is now feeling some return of strength which strengthens her hopefulness.
Me: Thanks for your patience girls in getting this information. It is just too much to say over and over again AND I had a pretty down day physically when I got home from the doctor yesterday. I was a bit revived last evening and very fortunate to attend my book club with my dear friend Pilar who drove me. I love the club. It is such a diverse group of women with varying views, likes and dislikes. It is intellectually stimulating and there are lots of laughs. - Just what I needed! As the book had been set in Afghanistan, our hostess, Edie served homemade scones and non-caffeine Green Tea. It was wonderful!! And she sent a scone home with me for Claigh, who returned late from Driggs. I am so grateful for Pilar's help in getting me there, up the steps, securely seated for such a delightful evening and safely back home again by 8:30 p.m. The past four days for me have been very difficult and this lent a bit of normalcy to my life. There is nothing like time with a great group of women.
Today was highlighted with a call from a friend who was out and about with her children. She wanted to know if I needed her to pick up anything for me. These are the kind of good souls I am surrounded with. Thanks so much Jeanne. Calls from Cameron, Ashlee and Sara just topped it all off so beautifully. I love my girls!
Medical Update: My doctor's appointment yesterday again left me with deep gratitude for such a diligent and thorough doctor. I can't say enough about that! Again, a few days prior to my visit, he had called his teaching hospital which is on the front lines of the latest and best techniques in treating this immune disorder to clarify our direction and question things that were unusual to the way things have been done in the past. EXCELLENT! What more could you ask. He was completely prepared for "next step instruction" to me, having dates and schedule in place. He writes it all down for me to bring home with me. Every question I have he is thorough in answering. At times he will pause and think through before he responds. I literally feel my prayers in his behalf are answered as he determines a possible solution or has a new thought.
My protein levels on my 24 hour catch were 13,000 grams. I was excited as that was lower than the last 16,000. He smiled and said that is really not an improvement but could be a mere reflection of how much protein I had consumed the proceeding day. He reminded me it is really too soon to see any improvement and told me people get concerned when their protein dump is 300 grams. My cholesterol continues to be over 500 with most of that LDL. I am sorry, I did not get the actual numbers - too much else to take in. My blood pressure continues excellent at I believe 107 over 72. My kidney function continues to be excellent except for the one glitch. There is still no damage and once the chemo and steroids begin taking full effect, the possibility of damage will be arrested for the time.
Dr. Haderlie felt it important to add Statin Drugs to my allergy list. He said the reactions are too dangerous, can cause permanent damage and I should never try them again. We had ended having tried three Statins adding CoQ10 to try and overcome the side effects to no avail. I am tolerating the Zetia very well. When my labs were done a week ago, I had only been on them 1 day so the result is not reflected in those labs. He said the Zetia will not bring things down like the Statins but it is the best we can do.
My right ankle is completely normal and the swelling in my left ankle minimal to where it had been. (I wore regular church shoes Sunday :D) I have very little leg swelling now. On the Statins, the swelling was completely gone for about 4 days, Dr. Haderlie said it is possible the swelling reduction was actually due to the 3 days of Prednisone Infusions I began this whole process with.
The Prednisone has made life very difficult for me. I went a week with only 3 hours sleep in each twenty-four. When I started taking the Ambien, I bumped up to 3 1/2 hours. Needless to say, I have become weaker and weaker due to this. Unlike the Statin side effect, I am very steady on my feet and clear thinking - just extremely weak due to physical exhaustion. I also asked him about the risk of becoming addicted to the Ambien. He said it is possible but as my need is not psychological in nature, his experience has been that as Prednisone effects subside, my need for the Ambien is likely to subside as well.
It is amazing to be extremely fatigued and unable to sleep. In addressing this issue, Dr. Haderlie acknowledged it is a part of the deal. When asked about the anxiety aspects, I told him I really didn't feel anxiety. I genuinely have a sense of peace. However, when there is something that I feel passionately about, I am way over the top intense. I HATE THAT!!!! Claigh, Ashlee and Alyssa have experienced this "intensity" and have been kindly patient with me. I also get teary way to easily.
As we talked, Dr. Haderlie took a pause to think and then offered that sometimes a difficult side effect of the Airprazaam he prescribed is that it knocks people out. He said there are those who just cannot wake up when they take it. We decided it may be a good idea to take it and see if it boosts may ability to sleep. INSPIRED! I took it twice yesterday (I can take it three times a day - just not at the same time as the Ambien.) Last night I slept just 10 minutes shy of 7 hours!!!!!!! What a relief!. I will continue taking the Airprazaam at breakfast and at lunch time. I think it will take some time to regain the rest I have lost but at least I am hopeful this last 1 1/2 weeks before I take a Prednisone break will not be wide eyed and wild. I also have had a less emotional day today. That makes me happy for my family :D
My last Prednisone for this round will be March 23rd. (Happy Birthday Ashlee :D) On the 24th, I begin Chemo-Therapy. I will go off of Prednisone cold turkey. The Prednisone is preparing my body to maximize the chemo's ability to do it's thing.
Dr. Haderlie tells me he feels I have an excellent chance of feeling very good on the chemo. It will be taken three times a day by mouth for 30 days. He said the challenge with chemo is all internal and at that point I will have to have weekly labs. NOT good for my small veins! They use children's needles on me because of the difficulty in getting my blood and in an effort to protect the veins as much as possible. He will monitor my labs each week and call me immediately in if needed. He is going on his first vacation in forever in three weeks and will keep track of what is going on during that time. He made sure I have his cell phone to call if needed. I WILL NOT CALL UNLESS IT IS A MAJOR EMERGENCY! He can count on it. Doctors have wives and children and must be respected for their family needs as far as I am concerned.
On April 23rd, I will begin the heavy dose Prednisone infusions (I can't remember but it is something like 1600 mg.) for three days in a row at the hospital again and then back to 30 days of 40 mg of Prednisone a day. I am not looking forward to that BUT I have such confidence through my prayers that Dr. Haderlie is right on in his treatment plan and I will NOT complain!! I am determined but alas, it isn't easy.
Again, Dr. Haderlie reminded me that this treatment is not a cure but has been effectively used to stop damage to the kidneys, protecting them while the body rights itself. He has a patient he has worked with for three years whose challenges were very similar to mine. Last week she was able to be completely removed from all medications and her body is functioning perfectly. Her kidneys are intact and the immune system has straightened out. I have the advantage of three more years of development of these therapies. HOPE!!!
I now have triple filtered water, and not unusual for me eat lots of organic vegetables and high quality protein. Beans continue to be a genuine source of strength for me. I eat only good fish, antibiotic/hormone free beef, buffalo, and chicken in small servings. My grains are the grains I love best - whole grain and seedy although I do enjoy a piece of Cibatta bread with melted white cheddar every now and then. I do not add salt to anything and have adjusted nicely to that. Good dairy has been critical in managing the extreme hunger pains. I stay away from all simple carbohydrates. They send me into a hunger rage!!! Sometimes a segment of Cadbury's Fruit and Nut bar really gives me a treat and seems to not bother me. A piece of plain cheesecake also seems to set well for a treat.
We have worked an appropriate supplement program for me (I have become such a pill popper - Who'd have thought?) and fine tune it as needed. I am committed to giving my body the best chance to work this through and fight. - Dumb VIRUS!
I love you all so much. Your support is appreciated. Happy Happy Week To You!
