June 8, 2014
It has been almost 6 months since I have sent an email, and I apologize for the length of time that has passed. There have been many changes in my "medical" life, but I continue to adjust to them with a renewed determination.
As I mentioned in my last letter, I was dealing with the continuing decline of kidney function. On January 2, 2014, I had my appointment for the monthly blood tests. My creatinine levels were elevated as well as the phosphorus levels. The GFR (Granular Filtration Rate) indicated that I was definitely in ESRF; end stage renal failure with a reading of 8….below 15 is end stage renal failure. Dr. Toor immediately called my nephrologist, Dr. Daran Glenn. I had the blood tested again on January 6, and had my appointment with Dr. Glenn on the 7th. From that point on, appointments were made and surgery scheduled.
We decided to do the PD (peritoneal dialysis) at home beginning with manual exchanges and then to the nighttime cycler to free my days. I could not have done hemodialysis as my veins could not have handled the treatment, and also my past history of blood infections would have made the treatment too dangerous. Also, I did not want to spend three days a week in a dialysis center with someone else handling my treatment. We all know I am one of those "I'll do it myself" people. I must have control over my medical treatment. The PD dialysis involved the surgical placement of a catheter in the peritoneal cavity (belly), thus no blood lines are involved.
I met with the surgeon, Dr. Raymond Makhoul on the 13th, a cardiology appointment on the 14th, cardiology clearance for surgery on the 16th, pre-op on the 20th and surgery for the placement of the PD catheter on the 21.
I did have a problem during the surgery with the anesthesiologist as she said she wanted another blood sample to double check my potassium levels. I asked that she not draw blood from the right arm as that is the arm that would have the bp cuff. I knew from past experience that I could have swelling in the arm. She claimed that it would not make any difference as she could not use the arm with the IV. I told her that my potassium levels were fine on my blood tests, but I finally agreed. I also asked what meds were being used in addition to the general anesthesia, but she refused to answer stating that I would not understand. I have always demanded information as I understand more than they think I do. Needless to say, after surgery my right arm started to swell. It continued to swell, and I was told to use compresses at home and keep it elevated. I developed extensive bruising from the blood draw. My arm turned purple from the wrist to the armpit with a 4 inch wide bruise. The arm was over two inches bigger than the left and painful. Add that to the pain from the surgery, and I was not a happy camper. When I was released from the hospital 7PM, I was suffering from the dry heaves, and we had a big snow storm. As a result of the snow storm and bad roads, we were unable to stop at a pharmacy to get the pain meds, so I just used Tylenol. I did have the meds filled the next day, but decided to just handle the discomfort without using them.
I had my first appointment at the DaVita Center on the 28th, and a post-op appointment with the surgeon on the 31st. At that appointment, I shared my problems with the arm and gave him a photo of the damage. He contacted the anesthesiologist, and she called several days and tried to claim that none of it happened and how did I know she was the doctor. DUH! She introduced herself and I read her nametag. Ross was in the room during these events. She finally agreed to FAX me the med orders the next day. I received the FAX two weeks later with a copy of the orders and the only message being "Sorry for the delay". I did document everything and included the picture sending it to the Anesthesia Associates along with my payment. I requested a written response and said they should be paying me for pain and suffering. They gladly deposited the check, but neglected to respond. They have had enough time, and I may still send the packet to either hospital headquarters in Tennessee or just forget it.
My dialysis training started on February 3, and the new journey began. I had an EPO injection as blood tests indicated that my hemoglobin was down to 9.0. Along with that injection, I had the first in a series of four iron injections and the first of 4 hepatitis B injections. The week of training ended with my finally being able to get in the shower…two weeks of sponge baths "stink".
I want you to know that I am very satisfied with the DaVita center. My nurse/trainer, Chantrice, has all the qualities that I look for in a medical professional. She is thorough, kind, and caring. When she draws the blood samples, I do not even feel the needle. It did not take long for me to put her in the super nurse/friend category.
I had a few days with normal drains, then the problems with fibrin requiring heparin in the fluid bags. The slow drains continued and were followed by a visit to an interventional radiologist to clear the line on March 4th. That did not work, so several days later; I had to go in for 6 hours of fluid medication into the catheter lines. There was some improvement. Another problem was edema, actually quite severe in my legs and my belly always felt like it would pop. Instead of 4 exchanges a day, I was cut to three a day as each exchange was taking between 2 and 3 hours instead of the usual of less than an hour. Finally I was scheduled for the nighttime cycler training on March 10th.
In March an adequacy test indicated that the dialysis was doing 55% of the work and my residual kidney function was doing the other 45%. I am fortunate that frequent blood tests were an indication that the kidneys were failing and we were prepared to address the issue. Many people go to kidney failure without prior knowledge. I had everything planned for the possibility of dialysis. On March 28, I had another test that indicated that I was an above average transporter. My script was changed to meet my needs. I no longer would have fluid in my "belly" during the day as the dialysis fluid was doing its job and after a few hours of the fluid dwell my body was absorbing the excess fluid causing the edema and bloated feeling. During this time I could no longer wear my size 4 pants and had to buy others. I could not get my shoes on and until I was able to get shoes, I had to wear my slippers to appointments. That didn't work well in the snow.
Right after the daytime dwell was eliminated, the edema disappeared and I dropped 10 pounds of fluid weight. I am now back to my size 4 and wearing shoes again. I have more energy and am able to handle any cycler alarms during the night (usually for slow drains). I have no problem sleeping while attached to the machine, just the interruption from the alarms.
I am handling this new journey. I like being the "real" me during the day. I seem to have a little more energy. Some nights are good, some not so good. Actually the good nights outnumber the bad ones. I have named the machine, "Sleep Buster". This is much better than the alternative as I don't plan on going there anytime soon. My list of things to still accomplish is too long to entertain those thoughts. I am just happy that we have the third bedroom as the supplies take up quite a bit of space considering that I use two 6000 ml bags of fluid each night for the cycler (4 cycles in 8 hours). The only way that you would know that I am on dialysis would be if I showed you the catheter outlet in my "belly".
I tried to condense this dialysis information. I have left out a lot of the information. Fortunately, you did not have to deal with the daily email updates to my immediate family. If you have any questions, do not hesitate to email me (firstname.lastname@example.org). As of today, everything is better. I have maintained a hemoglobin level of 13.4 without any EPO shots in the last month and a half. My phosphorus levels have been normal. Actually all my levels are normal or near normal except for the albumin and protein levels and also the kidney function levels. The lower protein and albumin levels are not uncommon for individuals on dialysis as protein intake must be increased. I am working on correcting those levels with increased protein intake to also include 3 scoops of protein powder in a daily shake. My weight is stable at 83.3 to 83.5 lbs. I would like to gain a little weight, but it is not happening.
I have been to my eye doctor and by the end of the month; I will probably need the eye surgery again. The lower lids are beginning to turn in again. He told me that I really did not have a choice regarding surgery as at some point I would have difficulty seeing. I have to use Refresh eye drops throughout the day to try to relieve the dryness. I am very sun sensitive. It is a good thing that I no longer drive a car as I am not sure how that would work with my eyes shut.
I continue to have my checkup at the bone marrow clinic. My blood tests are done monthly at the DaVita center, and the results are sent to the clinic. I now have appointments at the bone marrow clinic every three months.
Away from the medical for now…… Kim and Tyler have visited several times, and Tyler will be coming here for the summer on June 14. He just turned 16 and is completing the 10th grade. After one year in the MCJROTC, he has achieved the rank of Cadet Sergeant. He will be staying here and working for the complex landscaper. It will be fun having a teenager here. Kelli and Cameron have been to visit. Cameron is now 11 and a pure pleasure to have as a grandson. He just received his final grades for 4th grade….all A's. Kyle is also doing well in school and I hope that they will be able to make the trip from California to visit. It is a long trip and airfare has become very expensive. I do enjoy talking to him on the phone and see videos of him.
We are still happy in our home. We love the view and quiet, peaceful atmosphere. I put tomato plants on the patio this year. The plants are doing quite well, and we should have fresh tomatoes in about 10 days. I am looking forward to doing some more canning this summer, especially the fresh peach jam which I have on toast every morning. We canned tomatoes last summer and have had some delicious homemade dairy free tomato soup. The applesauce will be gone before the new apple season.
I did have some crafty projects this year. I crocheted ruffle yarn scarves and gave them away along with some for a silent auction for the Brain Tumor Foundation for Children in Atlanta. I also gave away a lot of my crocheted and clay necklaces to the foundation for children to select and give to their mommas. I have experimented with chalk paint and have done a few small pieces. I don't buy the expensive chalk paint as I make my own with paint and plaster of paris. When finished I use clear paste wax followed by a tinted paste wax.
I will not be taking part in the Be the Match Run/Walk this year as a participant as the early morning hour is not feasible while on nighttime dialysis. I did send some of the crocheted necklace to be sold with the proceeds going as a team gift and I will make a team donation. My friend, Jill, is again walking in the Relay for Life Redding, California. She also walks in memory of Matthew and many others that have lost their battles to cancer. We are supporting her walk as well as events to raise fund and awareness of childhood cancer. We accepted Kelli's challenge in the month of May to do at least 5 acts of kindness. I think I actually accomplished 7. It felt so good to accept this challenge that I hope to be able to do some more acts of kindness in the upcoming months.
I hope you are well and enjoying your summer activities. I seem to have more energy than in the winter months. Now I sometimes grumble when it is too hot. Take care, and I will try to write again without 6 months passing. Send me an email as I would love hearing from you.
November 23, 2014
In early June, I grumbled about the heat. Now it is time to grumble about the cold. The high in the 30's for this time of year is colder than usual. I think skinny people feel the cold weather more (or do people with thyroid disease feel it more)!!!
Health updates first; let's get it over with. Everything was pretty good with peritoneal dialysis until the 10th of August. I started running a fever of 101 and was told to take Tylenol because I didn't have peritonitis. I had an appointment on the 15th, and that morning my fever was back to 101 again. The cavity fluid was cultured and at that time, I was told again that they did not think it was peritonitis. On the 18th of August, I received a call and was told to go immediately to the emergency room at Chippenham Hospital. I had peritonitis in the dreaded form of a fungal infection.
I remained in the hospital until the 25th because it took that long to identify the form of fungal infection and determine the antibiotic that could possibly attack the infection. With a fungal infection, the catheter must be pulled and a catheter placed in jugular vein of the neck. The line was pulled on the 19th, the new catheter placed on the 20th and hemodialysis started on the 21st in the hospital.
After my release on the 25th, I had to start hemodialysis and continue it 3 times a week until end of October. The new peritoneal dialysis catheter was placed via general anesthesia as an outpatient on October 13th. I had to let healing take place for two weeks before restarting pd.
The hemodialysis completely destroyed my quality of life. If I had not been able to return to pd, I had made the decision to stop all treatment. It was a difficult decision because I am a fighter and a survivor as evidenced from my MDS diagnosis and transplant in 2003. I walked into the hemodialysis center and used a wheelchair to leave the center. Fluids could not be pulled during the blood cleaning process as my bp dropped so low, I had to be given fluids to stabilize the pressure. It took them 6 weeks to decide to change to a single use dialyzer, thus eliminating the excruciating headaches that would last for at least 6 hours on dialysis day. After arriving home each dialysis day, Ross wheeled me to my recliner and I stayed there for several hours before I could move. Between dialysis treatments, my blood pressure would get too high. High blood pressure at home, low blood pressure during the hemodialysis treatments.
Fortunately, the placement of the second catheter was successful. I am back on pd, and it is better than the first round. Those three months weakened me, so I am doing my best to regain my strength. I realize that my chances of a second fungal infection have increased by 35%. Another infection would put an end to the pd. I accept this, but also know that I have never done the norm. I must continue to fight. My one nurse/friend for the past 13 years told me.Shirley Bulloch does not do like most. The determination, knowledge and self-advocacy have brought me this far (unusual) and will continue to benefit me. I could be considered a germ phobic. If a person wants to be in my house they must follow my rules...wash hands with antibacterial soap and dry hands with paper towels. Don't come into my kitchen without following my rules. Be prepared to see me spraying various thinks in our home with Lysol spray or wiping down with Clorox wipes. I never shake hands, but might give you a hug. I don't touch doorknobs out in public. When entering a hospital, I still wear a mask.
As soon as I restarted peritoneal dialysis, my blood pressure returned to normal averaging 118/70. I no longer take the blood pressure medication. I connect to the home dialysis cycler at 10 PM and disconnect at 6:20 AM. I am now provided with 12 foot extension so I can now go to the bathroom and not just stand in the doorway and look. It is much easier than using the flexicap (temporary disconnect cap), then sterilizing the area and reconnecting a couple of times each night.
I have again put my house in order. I am ready to continue the fight and enjoy each day. I watch those that must "touch" me to make sure that the sanitation level meets my requirements. There are some medical people that will never again touch me. If that bothers them, then that is there problem.
Most of my friends have stayed with me, but I think some cannot handle it. Those that cannot handle it are not true friends. I accept that also. I just move on and think, "Oh well, that is their loss".
My own little survivor's club (four of us friends via the internet) is also a great support system. Two of them I met via this webpage and the other at the bone marrow clinic. We can share our experiences because we understand the difficulty of our journeys. We keep each other strong. I guess I am the big sister, momma and grandma of the group. You guessed it..I am the oldest. I am 74 and the youngest is 34.
When starting the journey of fighting against cancer, listen carefully. We know what the journey involves, but somewhere along the line we were not told or did not listen to the consequences of chemo and radiation. I honestly did not know that when I started the chemo and radiation in 2002 that I might experience kidney failure in 2014. I didn't know that my GVHD might be chronic. If I had known, I still would not have done anything differently. Look at all that I have gained and experienced since 2002..two more grandsons, the opportunities to travel, the time with my family, seeing the sunrise and the sunset. The list could go on and on.
The real downside for me was the day I arrived home from the hospital, a tooth fell out. I'll smile, but not a big smile. The repair continues to be delayed as the doctors want to make sure that I am well settled into peritoneal dialysis before I have any dental work. They are afraid of another infection. I guess it is not noticeable unless I give forth with a big smile.I'll just keep it to a grin.
On the 20th of November, we will again drive to the mountain to get a couple of bushels of apples. Ross will help me as we can more delicious applesauce..have apple crisp, apple pie, apple confit...Yum.
Generally, life is pretty good. I will have family for both Thanksgiving and Christmas. Let me hug those grandsons, and I will be happy. My shopping is finished and the tree will go up on Thanksgiving.
I hope all of you have wonderful holidays with family and friends. Take the time to hug your children and grandchildren. If you have any questions about MDS or ESRF (End Stage Renal Failure), or just want to chat, do not hesitate to email me at email@example.com.
Love you all,